Jesse's Journey

Just awesome

2010-11-16T14:46:00.000-03:30

I had to share this. It's an Open Letter to Parents Facing a Diagnosis of Down Syndrome written by an internet friend of mine, Lisa Morguess. (She blogs about her life on Adventures in Motherhood and Finnian's Journey.) I think that all parents of Special Needs kids can probably relate.

These kids will teach us more about ourselves and the world than we could ever dream was possible.

Sweet

2010-11-14T04:02:00.000-03:30

Our little family went to the beach today for a fall photo session with my wonderfully talented cousin, Tracy. While there, Jesse saw a little girl, maybe about 14-16 months old, crouched down, crying. Obviously concerned, he went over to her, crouched down next to her and put his hand on her shoulder, checking to see if she was OK. She stopped crying, looked at Jesse, smiled, and said "Hi, baby!"

I love the effect my sweet boy has on people.

Slightly OT - "....as long as its healthy"

2010-10-25T01:55:00.000-02:30

The following is a post from my private baby blog, which is currently available to friends and family by request. I thought it belonged here as well.

I don't know how many times I hear this or read this in the run of a month. Some expectant mother is asked, "Are you hoping for a girl or a boy?" And she invariably responds, "Oh, I don't care, as long as its healthy!" And I hate it. Once again, I'm sure to be accused of being overly sensitive. But really, would you love your child any less if it wasn't healthy? As someone who has a child with "special needs", who has seen more specialists and therapists than most senior citizens, I can absolutely say that such a child is a blessing in disguise. You come to appreciate those milestones and successes so much more than the parent of a normally developing child...because you don't take it for granted that walking/talking/playing/reading/whatever are just going to happen naturally. And it truly teaches you more about yourself and your capabilities as a parent than almost anything else possibly could.

So when I'm asked whether I'm hoping for a boy or a girl, I usually respond with something ridiculous like, "Oh, I don't care, as long as it doesn't have 2 heads." Gender does not matter to me. And whether or not the baby is healthy doesn't either. Quite honestly, I'd have another 10 just like Jesse if I thought that I could keep up with them!

Ch-ch-ch-changes!

2010-09-19T15:39:00.001-02:30

We fired Jesse's home therapist this past week. While it really sucks, in a way, it was a huge relief in another. Since May, we've put up with multiple lates and sick days, coffee being continuously spilled on our carpets, schedule changes to accommodate her, and a decreasing level of patience on her part. The straw that broke the camels back, however, was her posting about Jesse (using his name even) on her Facebook page. (Not to mention that it was post DURING his therapy session that day.

So, we're going to try without therapy for a few months. We're going to do playdates and playgroups and biweekly speech therapy. We may enroll in toddler Mother Goose or some other more structured activities. Jesse's language has come so far these past few months that it's now within the normal range for a child his age. So we're going to focus more on play and socialization, which he's been really missing out on, in my opinion.

Other big news is that Jesse's is starting to seem ready for potty learning! In the past couple of days Jesse has requested to use the potty to pee and he pooped on the potty without any suggestion from me or his father. This is so exciting, because I would *love* for him to be out of diapers before the next kiddo arrives. Which is the other big change we're expecting. "Trouble" is due to arrive some time in March.

I guess that's all for now.

Boiling Point

2010-08-09T14:32:00.000-02:30

I can't remember if I've written about this before or not, but I'm writing about it now.

We're having issues with Jesse's home therapist.

Since we hired her, she's been either late or sick nearly once a week. And sometimes twice a week! I've actually been pretty understanding, I think, in regard to bus schedules and whatnot. I understand if the bus is running a few minutes behind. That doesn't bother me. What bothers me is that she sleeps in or misses her bus FREQUENTLY. And she's sick a LOT, and often it's because she "couldn't sleep last night." I've already talked with her about it. Actually it was an email, since I thought it would be good to be able to proof read what I wanted to say, have it be objective, and then get a reply from her, and have a record of it all. It went well, I thought, with me suggesting starting therapy an hour later in the morning, and running an hour later. This would, I had hoped, put an end to the issues with "sleeping in" and "missing the bus."

No such luck.

Today she called about half an hour before start time and said she'd missed the bus, and it would be another hour before the next bus, so she'd be an hour late. Well, start time is 9 am, she'd get here at 10 am, and the senior therapist, who's only here once a week to review Jesse's programs, gets here at 9:30 on Monday mornings. This is just not acceptable.

If it were me, I would have called a damn cab and gotten to work on time. There is no way in hell that being an hour late for work on anything other than a once-in-a-blue-moon basis would be acceptable in any other job. I'm sure she doesn't do this at her retail job. I can't imagine her still being employed there if that were the case.

I'm so pissed off. Why can't people take this job seriously? I hear of this issue with home therapists from other parents a fair bit. And I think it's ridiculous! What's even worse is that she's SO good with Jesse and he loves her to pieces. I know he's going to really miss her if we let her go.

***sigh***

I'm just so frustrated.

Wow, it's been a while!!!

2010-08-04T14:31:00.000-02:30

I've been a very bad blogger this summer! I guess I just have so much to blog about that it keeps building up and building up and I need such a huge chunk of time to do it all that I keep putting it off....you know how it goes. I live by the Procratinator's Creed: Never do today what you can put off until tomorrow.

Anyhow, there are a few things I want to post about, including Jesse's 6 month follow-up with Dr. C (developmental pediatrician). But right now I'm posting about Jesse's speech therapy.

We FINALLY, after FIFTEEN MONTHS of waiting, got Jesse in to see the SLP, Kim, that works with the development program at the Janeway. It was a good appointment in all...and it lasted for about an hour and forty-five minutes, which was kind of surprising to me. I figured it would be an hour at the most.

At first the way she spoke to Jesse was very exaggerated and simple, but after about a half hour she seemed to get the fact that there's nothing wrong with his receptive language. (I did also tell her that his private SLP had just tested his receptive language a few weeks ago and found it to be perfectly normal.) She played with him a lot to get a grasp of what he was capable of, and she spoke with Jesse's home therapist quite a bit too. She wanted to know what programs he was currently doing and how he was doing with them.

Overall, she thinks he's doing really well. He's rapidly gaining language. Right now she wants us to work more on verbs, which we've been doing anyways (and are coming along!). She thinks speech sounds should take a back seat to more general language development. I don't think I really agree with this though, since he's rapidly gaining language fairly naturally as it is now. She had some suggestions for his therapy, too, which was great. She's very familiar with ABA therapy and so can make suggestions for programs to work on. And we're planning a home visit for later this month.

My one big concern though is that she generally only sees her patients once every 2 months. I'm not liking this, since he's been going weekly and it's obviously working. But Kim said that she generally works in more of a consultative role with the whole therapy team. I think that could be partly true, but I'm also pretty certain it's in large part due to lack of resources. So, we've made the decision to keep up our sessions, on a biweekly basis, with Jesse's private speech therapist.

Hopefully tomorrow I'll get a chance to update on Jesse's appointment with Dr. C.

Receptive Language

2010-06-21T00:49:00.000-02:30

At last Monday's speech therapy appointment the SLP tested Jesse's receptive language. What she expected to take 2-3 sessions took all of 20 minutes. His attending was awesome! And it turns out that Jesse is right on target! He scored 50th percentile for 2 - 2 1/2 year olds. I'd always thought that his understanding was pretty normal, and now we know it is.

New look

2010-06-21T00:44:00.000-02:30

I've changed up the layout and look of the blog. What once was dark and scary is no longer so. I figured I'd change the look of this blog to reflect the fact that there is so much happiness and hope in our lives right now. Jesse's made so much progress in the past few months that it's becoming increasingly difficult to tell him apart from "normal" kids. We're constantly smiling and laughing at stuff he comes up with. I wish that all of you out there who haven't met Jesse in person could, just so you could understand how awesome this kid is.

Looking forward

2010-06-04T14:42:00.000-02:30

Last night at our parents support group the topic of Kindergarten came up. A couple of the parents that were there have kids heading to kindergarten either this year or next. Autism services are reduced for kids when they start kindergarten, and then stopped altogether for kids as they head into grade one. It's a big deal. But honestly, it's not even on my radar screen right now. I said as much and the other parents tried to impress upon me just how close it actually is. It actually *is* still 3 years away, and to tell the truth, I'm not even sure we're going to send Jesse to public school. I'm of the mind right now that home schooling is definitely an option.

But beyond that, I don't see Jesse still having a diagnosis by the time he's five. (No, I didn't mention this to the other parents at the support group.) I may sound like I'm in denial or have my head burried in the sand, but the fact is, some children diagnosed with ASD at a young age eventually move off the spectrum. Jesse's developmental pediatrician has suggested that she thinks this will be the case with Jesse. And with the gains he is making in speech and communication, I'm very hopeful this will be the case.

I've always said that optimism was over-rated, but my views on that might be starting to change. And truly, it's difficult not to be optimistic about Jesse's development. The kid is blowing us away every day.

Racing for Autism

2010-06-02T13:22:00.000-02:30

Targa Newfoundland takes place in September of each year. For the last 3 years, the Halleran family from Paradise has entered a team, which they've called Racing for Autism. (Here is their website and here is their Facebook fan page.) They started the team after their daughter was diagnosed with autism. To raise awareness for Autism Spectrum Disorders, they place puzzle piece stickers all over their racing cars. These puzzle pieces that hold the names of children around the world who have been diagnosed with autism. This year, Jesse's name is on the car. And so is his picture. I cannot wait to see the car in person later this year.

For your viewing pleasure...

This picture shows Jesse's puzzle piece (the pink one at the bottom)

And here's his sweet face.

Many, many thanks to Ray and Julie Halleran for all that they do to raise awareness for all children on the spectrum.

A lesson in futility

2010-06-02T00:18:00.000-02:30

Prior to being seen by a developmental pediatrician when there's a significant speech delay and/or other developmental issues, a child should have their hearing tested. This is pretty much a standard thing. Our family doc only suggested this AFTER she heard of Jesse's PDD-NOS diagnosis. So she fills out the referral, we leave the office, and we wait to hear from Audiology. The call never came. I call our doctor's office, and the office staff tell me that they were never passed a referral to send. (See why I want to find a new family doctor for Jesse?) So we head back to the doc a couple months ago, and she refers Jesse to ENT because we can get in to audiology faster that way. (This time I personally handed the referral letter to the secretary.)

We had our ENT appointment yesterday. The ENT looked in Jesse's ears, and didn't see anything troubling. He then sent us straight over to audiology. The first machine they tested Jesse with tested his middle ears. No problems there. The second machine they tested him with tested his inner ears. No problems there either. Then she sends us to this booth where I have to play with Jesse with some Play-Doh and the audiologist in the adjoining room (she could see us through a window) played some sounds at different frequencies and every time Jesse turned to the sound a toy would light up and I'd have to reinforce him. She was really pleased with how well he did, both in terms of learning what he was expected to do, and with the results of the test. No problems with his ears. The audiologist then sent us back to the ENT, and he told me that Jesse had no hearing issues whatsoever.

Which I already knew.

Lazy

2010-05-31T02:42:00.000-02:30

I'm too lazy to post right now, so I'll just link a post from Hartley's Life with 3 Boys (which I just love) titled We Are Just Human. I think all moms and dads of special needs kids will be able to relate. Enjoy.

Learning with Uncle Josh

2010-05-30T02:24:00.000-02:30

My brother came home from Germany this week, and he and Jesse have enjoyed spending time together. I didn't realize though, that Josh has been "helping" Jesse with his vocabulary. Well, I did, but I thought it was limited to words like "nudge." Nope. I wonder how suprised Jesse's SLP will be to see "titties" on his vocabulary list on Monday? LOL

Playing catch-up

2010-05-26T11:26:00.001-02:30

I've been slacking on this blog. Big time. So I'm going to give some brief up-dates of a few things we've been up to.

ISSP
From the ISSP meeting we came up with the following three major goals:
1. To increase expressive vocabulary to 100+ words. To be implemented by family, home therapist (HT), and senior therapist (ST) in the home environment. To be reviewed October 2010.
2. Jesse will navigate his environment using heel-toe pattern. To be implemented by family, HT, and ST in the home and in the community. To be reviewed October 2010.
3. Jesse will understand and follow one and two step commands regarding safety. To be implemented by the family, HT, and ST in the home and in the community. To be reviewed October 2010.

As of now though, I think Jesse has likely already met goal #1. His vocabulary has just exploded. Jesse's SLP has told us that we're not going to be able to keep up with writing down his new words. And it's true! I'm going to try though. Probably tonight at work. I'd like to have a better idea of exactly how many words he does have. I suspect though, that it is around 100 words. Jesse's already come a long way in terms of meeting goal number 3 as well. I can actually hold his hand in parking lots now, whereas I used to have to carry him. He's much more compliant about important things, like holding my hand, and not running off. I'm still cautious, of course, and hold his hand tightly, but it so much better.

I think that the most difficult goal to meet is going to be #2 - dealing with the toe-walking. We have activities and exercises in play to encourage heel-toe walking, but so far, he goes straight back to toe-walking. I'm hopeful, but not convinced, that this goal will be met by October.

Home Therapy

Our HT is working out really well thus far. She's here from 8 am to 12 noon Monday - Friday. Jesse really seems to like her, and she's really patient with him. He's even saying her name. The therapy is going well and Jesse is mastering his programs without much trouble at all. He's working on puzzles, letters, matching, body parts, animal sounds (he knows a ton!!), prepositions, and following instructions.

My only concern with the home therapy, and it's a big one, is that the ST and her mentor seem to be very reluctant to move Jesse's therapy outside. The weather's getting nicer, and I don't want Jesse stuck inside this summer. Yes, his therapy is only in the morning, but Jesse naps for 2-3 hours every afternoon. That leaves little time for getting out and about. So right now I'm trying to come up with ways of doing his home therapy outside the home. I need to do some research on this over the weekend.

Chiropractor

We've decided to start taking Jesse to the same chiropractic clinic Steve and I use. One of the chiropractors there works with kids with developmental issues. She's trained in Brain Gym. We had our first appointment yesterday. She did a physical assessment and asked me lots of questions about Jesse and his development. It was interesting to say the least. She does think that she can help with the toe-walking and the w-sitting. She wants to do some craniosacral work, and possibly do some adjustments as well. She assured us that adjustments in kids are nothing like adjustments in adults. I was very happy with how calm and respectful she was. She told Jesse everything she was going to do, and adjusted her assessment and treatment to suit Jesse's desire to be up and about and active. Some of what she does seems very strange (which she warned me of!) but I'm not going to discount it unless I see that it's not helping. I can't say that I understand chiropractic care very much, but I do know that it works for me, so I'm willing to give it chance to help Jesse.

And last, but not least, we took Jesse to feed the ducks at the park on May 24th. He had a blast! Here's a video. You can here him asking for "more" bird seed. Don't mind my voice.

Word Detective

2010-05-21T10:06:00.000-02:30

I recently read a post on Hartley's Life with 3 Boys titled Sensory Detective. It was such an awesome post and I'm in complete and total agreement with it. This, along with recent developments in Jesse's expressive communication got me thinking about just how much of a detective I've had to become lately. In addition to the sensory issues, Jesse also likely has some degree of verbal dyspraxia. Since his vocabularly is growing by 1-3 words a day, and he's just now starting to put 3-word phrases together ("more juice please"), I'm constantly having to decipher what he's trying to tell me. And if I'm unable to figure it out, we're at risk of a meltdown. I'm getting better at it though.

For example, a couple days ago Jesse came running up to me in the kitchen holding a tiny piece of paper in his hand. He showed me and said, "babage!" I was stumped! He kept repeating it over and over, "Babage! Babage!" "What is it Jesse?" I asked. "Babage!" And then he started knocking on the cabinet door under the sink. Where we keep our GARBAGE can. I opened the childproofed cabinet door and sure enough, Jesse puts the tiny piece of paper in the garbage. "BABAGE!" He was so proud of himself! And I was so glad that I got it relatively quickly.

A few others that I've figured out recently:
"ma-mass" is Mickey Mouse
"doot" is both poop and milk
"dee" is Diego
"keys" is both keys and cheese

There are a couple others that come to mind, but I'm saving those for another post.

Book Review

2010-05-17T10:59:00.000-02:30

I keep saying I'm going to get around to it, and finally I have! My first book review. Forgive me though, it's been about 15 years since I've done one of these and I don't believe I even remember how. So no critiques of my critique please! If you've read the book though, please feel free to add your own review or comments in the comments section. I'd love to know what other people thought.

Motivate to Communicate: 300 Games and Activities for Your Child with Autism
by Simone Griffin and Dianne Sandler

I'm going to put the cart before the horse here and just say that this is a fabulous book chock block full of ideas and resources for working with children with autism. The authors, Simone Griffin, a speech and language therapist, and Dianne Sandler, a specialist teacher, both have years of experience working with kids with autism. And it shows! They take into account children's sensory issues and needs, as well as the child's level of communication ability (which can range from completely non-verbal, to relatively "normal").

First and foremost, this book shows parents how they can create communication opportunities throughout the day, with very little planning of set-up involved. Keeping desired objects (toys, books, DVDs, food, etc...) out of reach or in difficult-to-open containers forces (in a good way!) an autistic child to interact with their parent/therapist/caregiver in order to get what they want. Doing something unexpected (like having the child's sibling get in the bathtub with their socks on) or using "creative stupidity" (i.e. doing something intentionally to get a reaction, but pretending it's a mistake) encourages the child to comment or communicate in whatever way they can that they know something's different or not right. This section of the book, though short, is probably my favorite. I think that we, as parents, can get so caught up in our busy lives (especially when you're in the midst of so many doctor and therapy appointments) that you can over look these learning and communication opportities so easily. By being mindful of how to take advantage of every day happenings, you're able to work in so many communication opportunities so easily!

And that's just the introduction!!!

The rest of the book is full of the 300 specific ways you can motivate kids to engage and communicate. Chapter 1 is Motivate Me with Food. You can use different foods, from bread and toast to spaghetti and jello to do little activities that teach things like simple instructions, teach concepts (such as yes/no, big/little, long/short, shapes, colours, etc...), and experience food in a way that is not negative (which is too often the case for kids with autism). My only concern with this chapter is that it relies heavily on foods that would be in a gluten-free diet (breads, pastas, flours). Luckily there are still plenty of other suggestions, and other chapters.

Chapter 2 is Motivate Me with "Party Toys". Party toys include things like bubbles, balloons, slinkies, balls, cars, wind-up toys, magnetic toys, spinning toys, vibrating toys, light up toys, and stretchy and squishy toys. Many of these toys are very motivating, especially for kids who need lots of sensory stimulation. These are your typical dollar store fare. Which I tend to really dislike. I'm personally not a fan of cheap, made in China, decorated with questionable paint toys. Or ones with batteries that are at all accessible. But there are better options out there. And if you're worried about the quality/safety of certain toys that your child just LOVES, then you can always put them in a box on a high shelf and bring them out only during therapy or one-on-one play time with a parent/caregiver/therapist.

Chapter 3 is Motivate Me with Social Games. These games typically require engaging with other children or adults on some level. Hide-and-seek, pass-the-parcel, tag, musical chairs, and "I spy", are some typical examples. I love this chapter because you learn how you can help your child interact and play more with other kids. Many of the games may be beyond your child's current abilities, but there are things you can do to help them or even practice ahead of time.

Chapter 4 is Motivate Me with Outside Games. This chapter is full of ideas on how to use outside play time to encourage communication. I'm so glad they included this in the book, because I think that too often parents, caregivers and therapists can rely on structured indoor therapy. But these are KIDS! They need to get outside and run around and just play! Many kids with autism are VERY active (like Jesse) and this is really a necessity. The activities in this chapter include play with sand, water, snow, and messy things (like slime/goop, sawdust, soap flakes, etc...).

The last chapter, Chapter 5, is Motivate Me at Home and School. This chapter focuses on using toys and other things that you already have in your home or at your child's school. Like puzzles, books, and shape sorters. The possibilities are nearly endless. My favorite from this chapter is the Mr. Potato Head. We just picked one up for Jesse and he LOVES it! Such a great tool to use.

Also awesome about this book is the list of online resources, including internet businesses that sell toys for kids with disabilities, and websites that have information on autism and communication. Many of the sites are based in the UK, but they're still immensely helpful.

Overall, I'm really pleased with this book. I think it's a great resource and I think that every family affected by autism should have one, as should anyone who works with kids with autism. Actually, I think it would be a great book for anyone with a child with a speech/communication delay. Many of the strategies seem like they would lend themselves well to working with neurotypical children as well.

Amazed!!!

2010-05-10T10:00:00.000-02:30

We had our weekly speech therapy appointment this morning. SLP was very impressed with Jesse's vocabulary growth over the past couple of weeks. In the two months since we started speech therapy, Jesse has gone from being about 14 months behind (12 month level at 26 months of age), to being just 4 months behind (24 month level at 28 months of age). I'm over the moon!!!

Oldies but goodies

2010-05-06T02:18:00.000-02:30

I've talked a lot about Jesse's toe-walking. It's been a huge issue for us for forever. I didn't realize it at the time, but when Jesse started cruising around 7 1/2 months of age, he was constantly up on his toes. Of course, some degree of that is normal for babies. What wasn't normal was that his toe-walking caused him to develop a contracture in his right foot that prevented him from coming down onto his heel. And this prevented him from getting his balance enough to even stand unassisted, let alone walk.

Jesse had always met his gross motor milestones on time or ahead of time. So when time kept creeping onward and Jesse still walking walking on his own, wasn't even STANDING on his own, I *knew* something wasn't right. He wasn't lazy. He wasn't "too good of a crawler." It wasn't because I did everything for him. Or carried him everywhere. Those were all the reasons I was given when I dared talk about my concerns.

Eventually I made the following video. It was taken with a crappy digital camera when Jesse was nearly 16 months old. This video confirmed for me that there really was an issue, which is clearly visible to anyone who watches it. I showed it to a friend of mine who works with kids as a physical therapist and she validated my concerns. It gave me the kick in the ass I needed to demand that I be taken seriously and that Jesse be properly assessed.

So, without further ado:

I also wanted to throw in this video....the day Jesse finally stood on his own....took his first steps....and walked clear across the room!!! This was taken about a month after the first video. After a couple weeks of physiotherapy. He was still up on his toes, still had the contracture, but had finally managed to get his balance enough to stand, to WALK! Boy, was I a proud mama that day!!!

Jesse's ABA Client Report

2010-05-04T01:23:00.000-02:30

I'm going to attempt to type this out, and post about the ISSP meeting as well. This will be pretty long. It'll probably be a hugely boring read for most people, but may be helpful to someone going through a similar experience.

The ABA Client Report was prepared by Jesse's Senior Therapist (ST). The report was based on her findings from the Brigance Early Childhood Screen II 0-35 months, and the Carolina Curriculum that she'd performed April 12, 2010. The following is taken directly from her report:

Findings and Service Plan:

The Brigance Early Childhood Screen II 0-35 months, as well as the Carolina Curriculum were completed through testing, and parental interview in April 2010. The results indicate that Jesse is showing the greastest delay in the area of Language development. My role as a Senior Therapist is to address these delays and in consultation with the therapy team, develop a program plan to assist Jesse with mastering skills appropriate for his age.

The purpose of today's report is to share information regarding Jesse's present developmental skill level and to project the program goals for the next six months.

Physical Develpment (Fine & Gross Motor):

This scale measures the child's ability to coordinate movements of large and small muscles of the body.

Jesse shows many strengths in both his fine and gross motor develpment. In terms of fine motor skills, Jesse attempts to solve problems by imitating adults, and is able to imitate sequences of two unrelated motor acts. He turns doorknobs with forearm rotation, puts small objects through small holes in containers, and builds block towers 8-10 blocks high. Jesse is able to put together and take apart pop-beads, and he demonstrates a right hand preference. He also demonstrates good tool use. He can hold a bowl and stir, and can transfer material with a spoon. Further, Jesse shows purposeful and well controlled scribbles and strokes.

Jesse also shows many gross motor strengths. He can jump on the floor, he can walk backwards, can take many steps on his tiptoes, and can run at least 10 feet without falling. He can rise on his tiptoes and can stand on one leg with a stable posture for 1-2 seconds. Jesse can throw a ball, can climb both slanted and vertical ladders, is able to use a slide independently, and runs in a variety of environments.

Goals:
-Jesse will unbotton large buttons found on clothing
-Jesse will imitate horizontal strokes
-Jesse will use heel-toe pattern when walking
-Jesse will walk up stairs, using an alternating pattern while holding onto a rail
-Jesse will pedal and steer a three-wheeled bike

Self-Help Development:

This scale measures a child's ability to cope independently with the environment and measure their skills with such tasks as eating and dressing.

Jesse shows many strengths within his self-help skills. He can use a fork, and can drink from a small glass held with one hand, but prefers a sippy cup. He is able to undress himself completely, is able to put on simple clothing such as pants, shoes, and socks, and can manipulate velcro and zippers. Jesse has strong grooming skills and is able to wash and dry his own hands, brush his teeth with assistance, and wash himself with a washcloth.

Goals:
-Jesse will put on a t-shirt
-Jesse will undo fasteners (i.e. large buttons and shoelaces)

Social Development:

This scale measures the child's interpersonal relationship abilities.

Jesse has very good eye contact and will respond to his name most of the time. He tolerates being taken into a variety of environments and frequently explores different environments. Jesse knows what toys can and cannot do and uses them appropriately. He tries to comfort others in distress and spontaneously shares with peers. He shows determination in choosing and continuing activities and shows pride in his achievements.

Goals:
-Jesse will share with another person
-Jesse will engage in simple turn taking games with another person
-Jesse will avoid common dangers in the home and environment
-Jesse will recognize himself and others in photographs
-Jesse will expand his play skills through imitation

Cognitive (Academic) Development

This scale meaures children at the preschool level and evaluates the child's development of skills pre-requisite to scholastic functioning.

Jesse is showing many strengths in the area of academic development. He sorts objects by size, builds block towers, and uses tools to solve problems. He can point to a hand that is hiding an object, and engages in adult role play. Jesse demonstrates good comprehension of cause and effect when playing, and understands the concept of "more" as an addition to some existing amount.

Goals:
-Jesse will demonstrate recognition of familiar objects
-Jesse will put together puzzles with four or five interconnected pieces
-Jesse will match identical pictures
-Jesse will attend to a story and repeat words and sounds
-Jesse will independently stack rings of graduated sizes
-Jesse will imitate block building

Communication:

This scale measures the child's expressive and receptive communication abilities with both verbal and non-verbal gestures.

Jesse is able to follow commands in familiar contexts and understands words used to inhibit actions, such as "wait," "stop," etc...He spontaneously uses words during play and spontaneously says familiar greetings and farewells at appropriate times. Jesse is able to point to many body parts, such as chin, neck, shoulder, and knee, and imitates the vocalizations of others.

Goals:
-Jesse will follow two-part related commands in novel contexts
-Jesse will use words to request actions
-Jesse will imitate two word phrases or sentences
-Jesse will increase his vocabulary to 50 words
-Jesse will increase his spontaneous communication

Summary:

Over the next six months Jesse will be followed by the Regional Autism Services division of the Direct Home Services program. I will conduct weekly visits to monitor Jesse's progress. Programs will be developed in accordance with the goals that will be outlined in the upcoming ISSP as well as parent priorities. At the end of this six-month period the assessments will be re-administered in order to assess Jesse's progress and to develop and implement new programs and goals for Jesse.

We're in business!

2010-04-29T02:03:00.000-02:30

We've FINALLY hired a home therapist for Jesse! Yay! I won't use her name here unless and until she gives me permission, so for now I'll call her HT. We interviewed 3 people for the position. Any one of them would have been wonderful, I believe. It was a really hard decision to make. But there was just something about HT, and this position working for our family fits perfectly with her schedule. Her references all gave glowing recommendations. She starts working with us on Monday. It's a great day to start too! She'll come to Jesse's 8:30 a.m. speech therapy session, then get to meet Jesse's senior therapist (ST) and her mentor. Then in the late afternoon she can go with me to the "Making Connections in Autism" program offered at the Janeway.

I'm actually getting kind of excited about this. I think that this will be great for Jesse. He's been making great strides already these past 2 months. So this is probably just going to help him all that much more.

I still have to post about Jesse's ISSP meeting. I do have the report from that now. I have a 4 day weekend coming up, so I'll try posting it then.

G'nite!

Just a quick update

2010-04-23T15:12:00.000-02:30

We had our Individual Support Services Plan (ISSP) meeting this week. In attendance were the social worker, Jesse's senior therapist, her mentor, and myself. Jesse's SLP sent along a progress report to be included as well. We discussed Jesse's strengths and needs, and picked three main areas to work on in the coming six months. I should have a copy of the formal report on Monday, so I can go into more detail then. We also reviewed and signed the service funding agreement, which will pay for the home therapist that will be working with Jesse.

Speaking of which, we're finally on the ball with regard to hiring someone. We've interviewed one person already, and it went REALLY well. The only issue is that she's looking for the full 30 hours per week (as it's her income and all) and we were hoping to find someone part-time. It's an option though. We have two more interviews lined up in the coming few days. Hopefully we'll have a decision made by Wednesday and can get everything lined up for home therapy to start the week after next.

Also, I received and invited to attend a program called "Making Connections in Autism" at the Janeway. It's a program of four education sessions for parents, caregivers, and therapists of children with autism - in particular those who have been waitlisted for SLP and OT services. It's taking place over 4 weeks in May. I've already notified them that I will be attending. I'm hoping our home therapist (if we have one hired by that time) will be able to attend as well. My fingers are crossed that this will give me some ideas for how to break Jesse of his toe-walking.

Look how far we've come, baby!

2010-04-20T08:47:00.000-02:30

At Jesse's first speech therapy appt on March 8th (about 6 weeks ago) Jesse had 5 functional words. A simple conversation wasn't even a possibility. And now it's a reality. Last night when I was at work, Jesse didn't want to go to sleep for Steve, so they called me up and I talked to my boy.

Me: Hi Jesse
Jesse: Hiiiiii!
Me: Are you being a good boy for Daddy?
Jesse: Umhmm
Me: Can you blow Mommy kisses?
Jesse: Mwah!
Me: I love you baby. Now give the phone back to Daddy.
Jesse: Bye Mom.

I'm feeling kinda optimistic.

Put yer feet up....

2010-04-19T01:48:00.001-02:30

...this is gonna be a long one!

Tomorrow is Jesse's Individual Support Services Plan (ISSP) meeting. It'll be here at the house, so I don't have to find a sitter (thank goodness). There will only be a few people in attendance - the Autism Program's social worker, Jesse's senior therapist (ST) and her supervisor, and myself. Jesse's SLP can't make it, but she emailed me a progress note. Steve can't make it either, since he's already at his max vacation time this year. He helped me write up our own contribution to the meeting anyways. It's basically just a sheet of paper with the heading "strengths" written on the left and "needs" written on the right. We came up with the following...

Strengths:
-non-verbal communication
-growing vocabulary
-will attempt new words
-imitation
-high energy
-great fine motor and gross motor skills
-likes to be around adults and other children
-transitions easily from one place to another and from one activity to another.

Needs:
-to work on increasing vocabulary and phrases
-to work on decreasing toe walking
-to work on interactive play with other children
-to work on not running away when out in public
-has difficulty breaking certain routines

Jesse's SLPs progress note also listed some strengths and needs, none of which were a surprise to me. It was very encouraging though, that she seems so pleased with his progress thus far. It will be interesting to hear what his ST and her supervisor have to say at the meeting tomorrow.

I'm also really looking forward to this, because the funding for Jesse's home therapy program will be approved. We'll actually be able to pay whoever (whomever?) we hire to be Jesse's home therapist!

Speaking of which, we have an interview set up for Wednesday night! I'm very nervous about interviewing someone. I've never really done that before, aside from sitters for Jesse. I suppose this shouldn't be that different though. I definitely need to prepare for it though! I also have to go through the rest of the resumes and try to find a few more candidates to interview. I'm thinking 5-6 interviews should be sufficient. I really want to find someone who's high energy, friendly, creative, and dependable.

Also, I figured now would be as good a time as any to share an update on Jesse's vocabulary. It's growing so much! It's very difficult to keep up with now too, since he'll at least try to imitate almost any word you ask him to say.

Imitated/prompted words:
Koko (the daycare owner's dog)
ears
hair
knees
toes
on
out
boots
shoes
go ("doe")
duck
gone ("don")
ball
arm
god
mouse
purse
pee
cheese

Spontaneous Words:
Mom
Da/Dad
Nan
Pop
Josh ("Dosh")
Jesse ("esseez")
Anna ("Nana" - daycare owner's daughter)
no
this
up
nose
baby
hi
bye
juice ("dooce")
bees (refers to nursing)
boo
uh-oh
off
eyes
poop ("doot")
hot
beep
more ("no")
ta-da
night-night
hop
ding-dong ("ning-nong")

Jesse also has a handful of two-word phrases now too, including "bye bees/Mom/Dad/Nan/Pop/Josh," "my baby," "no, Jesse's!" and "uh oh Da!"

It's quite a bit better than the list from March 11th, which was the last time I did this. And so, so much better than the 5 words he was using when we had our first speech therapy appointment with his current SLP on March 8th. That was only 6 weeks ago! His non-verbal communication has also come a long way since then, which is very helpful. He's much better able to communicate with us what he wants (to eat, for example) and when he wants us to play with him.

There's so much more to tell, but it's getting late and we have an early rise tomorrow. Speech therapy is at 8:30 and the ISSP is at 10 am! Hopefully I'll get a chance to update tomorrow.

My travels around the blogosphere

2010-04-15T23:41:00.000-02:30

I have such a difficult time verbalising to others just how life changing an ASD diagnosis is for a family. This blog post does a much better job than I seem to be able to do.

While I may often seem like I am stuck in that moment in time where the entire world came crashing down around us, there are moments of hope breaking through. Jesse gives us hope every single day. This is a process. And I just ask those that care about us to not rush us. Let us work through this in our own time.

Operation OT

2010-04-13T16:06:00.000-02:30

I'm on the hunt for a private Occupational Therapist (OT) for Jesse. He's finally on the list for the Janeway OT, but the wait is 18 months long. So, private it is! Well, it's not really as easy as that. According to the NLAOT, there is only ONE private therapist who specializes in pediatric learning and development. I called and apparently she is VERY part-time. She may not even be taking new patients. I should be hearing back from them within a few days.

So frustrating.

Denial

2010-04-13T13:51:00.000-02:30

It's so devious, isn't it? Everything's going well and so it creeps in and you start thinking, "they have to be wrong." Jesse had his assessments yesterday by the senior therapist (ST) and her supervisor yesterday. It went so well! He was so compliant with the testing (which mostly just resembled structured play) and was so interactive. ST and her supervisor were really pleased with how things went and how easy it was to work with him. He seemed so normal. I mean, really normal! There were things that he couldn't do, of course, like identify colours, and he did have trouble with one of the matching games, but so would neurotypical 2 year olds, I would think. So all day yesterday I kept thinking that they must have made a mistake when they decided Jesse has autism.

Then last night he started spinning. And he's been doing it today as well.

I guess it's a good think his ISSP is next week.

My sweet boy

2010-04-09T15:16:00.000-02:30

I thought I'd take a break from all the therapy, training, appointment posts and just post a beautiful picture of my sweet little boy. This was taken Easter Sunday at my Aunt Cathy's house. She invited us out for Easter. After an awesome Easter Egg hunt around the house, Jesse was spent, and went down for a nap.

Toe-walking suggestions

2010-04-09T15:10:00.002-02:30

A friend of mine sent out an email about Jesse's toe-walking, asking for contacts for private OTs and she received this reply from an OT and sent it to me:

"I think it is a problem that needs to be addressed ASAP…especially for children with autism. I saw several kids with autism who were toe walkers (age 4-5) and it was not caught early and later required serial casting and botox. If you catch at this young age you may be able to prevent some discomfort and expense down the road. In my experience children can do this for a few different reasons. One may be they especially like the extra sensation through the metatarsal heads that they get. It doesn’t take long for them to establish a new centre of gravity and stay up on their toes and lose awareness of what it feels like to be flat footed. To start I would put in a sensory awareness program around the feet including heel pounding. This involves the child lying down with foot in the air. Caregiver support the leg above ankle with ankle at 90 degrees and then with palm of hand hits the heels of the foot (like giving five) several times. I pick a number and try to be consistent for the child’s benefit. I would also do an Achilles stretch at least three times a day and hold for 20 seconds cupping the heel in your palm, laying foot on forearm with the child's knee bent and then extend child's knee to get as much ankle range as possible. Walking on a semi-inflated air mattress or jumpy castle with no shoes helps encourage the child to come down off toes. Jumping also gives extra proprioceptive input through foot but watch to see if they are staying on toes. (This can also strengthen calves which helps them to stay up on toes! ) Generally you want to increase the child’s awareness of the bottom of their foot so the more sensation to the bottom of the foot the better (walk barefoot on grass, sand, scrub the bottom of the feet in the bathtub and with towel after)). A good game to play to encourage dorsiflexion is to hold the child's heel on the floor while she is sitting on a low bench and have him lift his toes to enable a small toy to pass under his foot. Another thing you can do is while he is on his toes is put a ball of playdoh under his heel and see if he will squish it. It is tricky and a common problem. There doesn’t seem to be a common answer as to why these kids present with toe walking but I would definitely do the stretching and closely monitor the ankle range. We have also had kids who we referred for AFOs to prevent any further loss of range. Likely at 2 loss of range isn’t an issue yet and it will be caught. Another idea if the feet are small enough are those sneakers called “squeakers”. Every time the heel hits the floor the child's sneaker squeaks. This can be reinforcing. You want to teach the child the idea of flat feet so that they will understand if they are on their toes and you say “flat feet”, what you mean.
Good luck. I hope that helps.

C.S."

I'm not including her name because I don't have permission to. I probably should get that. At the same time though, I'm worried she'd tell me to remove it, and then the info won't be there for other parents who might find it useful. So for now I'm going to leave it up.

I also want to add, that it doesn't take that long to cause problems with contractures. Jesse ended up in serial casting of his right foot at just 17 months of age. When he began cruising at 7 1/2 months, he was always up on his toes. Of course, at that age, you think nothing of it. Unfortunately we didn't realize it would be a problem until it was too late. Jesse's gross motor development, which until then had been normal or even advanced, was severely affected (he didn't even stand unassisted until he was 17 months old...the same day he took his first steps, actually). The casting fixed the contracture, and corrected the toe walking that we didn't even really know about. For a while. That was all last summer. Since then the toe-walking has slowly started creeping back in. I really took notice of it around Christmas. We got him back in to see a physiotherapist just after his diagnosis in February. But by that time he was toe walking about 90% of the time. He still is. Unfortunately, PTs deal mostly with the effects of toe-walking (decreased range of motion, contractures, etc...) and not the toe-walking itself. We have to see an OT for that. So Monday I'll be calling around to any and all private OTs that I find. Apparently we're already on the wait list for the Janeway Development OTs, but their waitlist is 18 months long. Only 16 months to go! ***groan***

Just call me Pavlov

2010-04-09T14:45:00.001-02:30

This week Steve and I took the Applied Behavioural Analysis (ABA) Training course that home therapists are required to take to work with kids with autism. It's offered to parents so that we can understand the programs and assist as needed, and also so we can better understand our kids and our interactions with them. It was all very interesting. It's VERY much based on the principles of operant conditioning. The trainers were great, and the other parents and home therapist that attended were fantastic. It actually was a lot of fun, which I hadn't expected. It also helped me to see that this home therapy will actually be fun for Jesse as well. It's meant to be.

I was really surprised too, at how the discussion we had seemed to tie some things together for me. Some things that Jesse does have always been a mystery to me. Like a year ago when he repetitively rolled himself off the couch to fall sideways on the floor. When he repetitively bangs his head, arm, leg, back again the wall or furniture. It's all a sensory issue! It's not seeing, hearing, smelling, touching or tasting. It's proprioception! It's one of the seven senses we have (there's also vestibular), and Jesse seems to just need more of that sensory input!

There were other times though, during the course, that I though how Jesse really doesn't fit the bill. I know there's a huge range of abilities and issues when it comes to an autism diagnosis, but in many ways Jesse is just so NORMAL! For example, they explained that imitation usually has to be taught. Imitation or mimicry is one of the major ways kids learn how to do things or how to act, and it's often (usually?) absent in kids on the spectrum. Well, Jesse mimics EVERYTHING! From chasing around the kids at active play and "falling" when they fall, so mimicking Steve's mannerisms and speech. And there were other things too....I can't recall them all at the moment due to sheer exhaustion, but it really made me doubt, at time, the diagnosis. I guess all we can do it wait and see. His ADOS will be repeated at age 3 and he may or may not come away from it with the diagnosis again.

***edited May 1, 2010 to add:
The title of this post will tell you how far removed I am from my B.Sc. in Behavioural Neuroscience. I'm only now realizing it should be "Just call me Skinner".

"My Baby!"

2010-04-05T23:54:00.000-02:30

Yes, this is what Jesse said today. I'm adding it to his list of two-word phrases, which, until today, has consisted only of "bye [insert noun]." He says "bye bees," "bye Mom" (I nearly fell on the floor when he said that to me when I dropped him off at day care last week), and "bye Da/Josh/Nan/Pop."

This sweet little phrase turned my otherwise crappy afternoon into pure awesomeness. We were meeting with Miss Crabby-Ass insurance adjuster when he said it. I had just taken him out of the room because he was getting loud. I was holding his baby doll (which was MY baby doll 29 years ago) and he reached out and said "my baby!" Clear as day. He hasn't said it since, but I'm hoping to hear it again soon.

In other news, we reached a deal with the other guy's insurance agency. They're giving us a grand total of $1000 for our car, but we get to keep the car and scrap her. (They're paying to replace the car seat as well.) We also found a new(ish) car to replace Steve's 1999 Sonata. It's another Sonata. A 2006 model. Steve is quite pleased that for once his car will be newer than mine (by about 5 months). We get to pick her up tomorrow. I was so worried that we wouldn't have found another car by the time Steve goes back to work next week. (He's on holidays this week for the ABA training.) We need two cars since Steve works about 30 minutes outside of town and Jesse has his speech therapy and various other appointments during the week that I need to take him to.

So that's a couple of things that are now out of the way.

Tomorrow Steve and I start the ABA training. We had hoped to be doing this with our newly hired home therapist, but we haven't even gotten around to looking at the resumes yet. We'll probably be starting that task tomorrow night or Wednesday night. The ISSP is tentatively scheduled for April 19th. Only then will funding be approved to pay our home therapist, so I don't feel too behind.

Oh, and we're also going gluten free (GF) this week. I just need to pick up some foods to get us through the first week or so while we learn how to incorporate non-gluten containing foods into our diet. I'll definitely write more on this later. Oh, and my book report. I'll have to work that in too. Damn, I'm such a procrastinator!

Now we're getting somewhere

2010-03-30T15:27:00.000-02:30

So sorry for slacking on this blog. There's just so much going on right now. My husband, Steve, was in a car accident on Thursday. Steve is mostly OK, though he's having some back pain and had to take some time off work. The car is toast. We were really hoping to get another couple of years out of Steve's car, so that we wouldn't have to be making 2 car payments, but God/fate/karma/whatever had other plans. I'm sure we'll get through, but we've been really busy trying to get all of this straightened out.

In the meantime, Jesse is doing really well. His language is really coming along. His list of words, both imitated and spontaneous, grows daily. His SLP is really happy with his progress. I also have a book I'm reading that is giving me some great ideas on how to help this along at home as well. It's called Motivate to Communicate. It's written for kids on the spectrum, but I have a feeling it would really work well for kids with a "simple" speech delay as well. I'm not that far into it yet, but I'm hoping to have it finished by the weekend, and can give you a review of it.

We've also been assigned a senior therapist! Yay!!! She's actually still training, so her supervisor will be coming along with her and helping her, which is great. They both paid us a visit this morning. We mostly just went over Jesse's history and what our main concerns were. They also gave us a bit of an overview of what the next few weeks will consist of. On April 12th, they'll return and do Jesse's evaluations, and then on April 19th (tentatively) we'll have Jesse's ISSP (Individualized Supports and Services Plan...I think that's what it stands for). That's when we'll come up with the plan of attack for Jesse. It's only when we have the ISSP that we get funding for the home therapist. (Speaking of which, we still haven't hired anyone yet. I have about 40 resumes here, though, to look through.)

I also keep meaning to do a little book report, of sorts, on the book I just finished a couple of days ago. It's called Changing the Course of Autism: A Scientific Approach for Parents and Physicians. It's not an easy read by any stretch of the imagination. There's a lot of anatomy and physiology and immunology knowledge needed to understand it well. It did challenge me to recall a lot of what I learned in my B.Sc. and my B.N. I think it's worth reading though, for any parent who has a child on the spectrum. (And for any doctor treating a child on the spectrum.) Jesse's waking up from his nap, so I can't get into it now, but I will definitely give a review of this book later.

Holy crap!

2010-03-23T13:13:00.000-02:30

No this isn't another poop post. LOL

Jesse said a TWO WORD PHRASE!!! I'm beyond over the moon about it. This morning when he woke up he climbed in bed and nursed, as per usual. When he was done, he pulled my shirt down and waved at my chest and said "Bah bees!" Translation: "bye boobies." I'm just so thrilled!

Bad Day

2010-03-23T04:34:00.000-02:30

Today started off on the wrong foot and that really set the tone. We both woke up at 7:15 am and had to get ready quickly for Jesse's speech therapy at 8:30 am. Jesse wanted to nurse, and he did, but apparently not long enough. As soon as I started trying to get him ready - change his diaper, get him dressed, wash his face, etc... - he freaked. Then he wouldn't eat breakfast, refused to put on his coat and shoes, and was just an over all pain in the rear. It didn't help that I was running on two hours of sleep.

So we were late for our 1/2 hour speech therapy. And when we got there, all Jesse wanted to do was nurse. She did give me some more ideas though for helping Jesse. It's all stuff I've already been doing with Jesse, just less intensive. Things like stressing the words in, out, on, off, up, down during play and in our every day life. I have to narrate everything. It's a bit difficult to get used to, since I'm not really a very talkative person (something I've been working on since I first noticed Jesse's speech issues a year ago). He is picking it up though. He can say all of those words, even if he only says up and off spontaneously right now.

After that we went to an active play playgroup, which went relatively well. At least it helped Jesse burn off some energy. Later though when I put him down for a nap, he wouldn't let me get up (he'd wake if I moved). I have so much stuff to do, and I really needed to use his nap time to do it! (((sigh)))

I have another 15-20 resumes (ABA home therapist applicants) to print. I have probably 40 resumes to review. I still have to figure out a way to rate them and decide who to interview. We were finally assigned a senior therapist (this past Friday...squeaky wheel gets the grease, I guess) but we don't meet with her til March 30th. So I have no idea how to go about hiring someone. And since we won't have had an ISSP yet, I have no idea how many hours we will qualify for, so I have no idea what to tell the home therapist applicants. The social worker was hoping we'd have someone hired by the time the ABA therapy training session comes up in April, but it's not looking hopeful. Steve and I will still do the training (if my manager gives me the time off, that is). But we may end up holding off for a couple weeks or more on hiring someone. And to be honest, I'm not that worried about it. I know that sounds horrible, but really, Jesse is doing pretty well lately (save for today, I guess).

I also didn't get the chance to call the physiotherapist and ask about a joint PT/OT appointment. I really need to get on that. After speaking with some people who work at children's rehab or development departments, I'm thinking we may need to go private with OT as well. I'm just worried that these private services are going to result in a lack of communication between care providers.

I'm just feeling a bit overwhelmed at the moment.

Parents meeting with Dr. C

2010-03-18T17:05:00.000-02:30

We had an appointment with Dr. C yesterday at her office. It was just for Steve and I to talk with her, since I was too stunned to think the last time we had an appointment, and Steve wasn't even there. Jesse spent the morning at day care.

I think Steve feels better for going and asking questions and getting her take on things. Me? I'm leaning towards taking Jesse out of the province to see another specialist. Possibly. It's not that I don't like Dr. C. I do. She's really pretty great, actually, and she has a special needs child of her own, so she kinda gets it. But I don't think she quite understands where I'm coming from on the gut/brain link issue (though she didn't completely discount it).

She agreed that Jesse really does need to see an occupational therapist. That might be tricky though, since she heard a rumour that the OTs at children's rehab aren't even taking new patients, and even if they are, the waiting list is about 18 months long. IN-FREAKING-SANE! She's sending off a referral anyways, and stressing Jesse's previous orthopedic issues (heel cord contracture) that likely resulted from his sensory problems. She also thinks that OT may be able to help him with his speech, since they'd be able to address any issues he has with apraxia. She ALSO wants me to call up Jesse's PT and ask her to set up a joint appointment with an OT, which wouldn't entail such a long wait. Hopefully. Our other option is to go private, and Dr. C did give us the name of a private OT in the area who works with kids with development issues. That's definitely an options. I'm pretty certain we have coverage for that under Steve's insurance.

Overall it was a good appointment. Dr. C did stress that with the gains Jesse is making (especially now with speech) that she would like to re-test Jesse with the ADOS at age 3, with the hope that he would no longer fit the diagnosis. My fingers are crossed that we can get to that point in a year. If the past two weeks are any indication, it's a definite possibility!

That mom

2010-03-18T09:13:00.001-02:30

You know the one. You can hear her child coming a mile away and you roll your eyes. "Why would anyone buy those shoes for their toddler?!!!" you ask to the person standing beside you. "Don't they realize how annoying that is!!!"

Well, I used to be that mom who indignantly rolled her eyes and scoffed at the other mom who had decided to wear squeaky shoes on their child. Now I am the mom that has decided that squeaky shoes are well worth the annoyance factor, particularly if they encourage my little boy to walk heel-to-toe, instead of on his tip-toes all of the time. After Jesse spent 5 weeks in a cast last summer, after he was cut with dirty casting scissors, after he went through three rounds of bloodwork to make sure he had not contracted HIV or Hepatitis B from the dirty casting scissors, I would endure squeaking day-in and day-out to prevent that from happening again.

If you're that mom, the one rolling her eyes at me (like I used to do to others), then thank your lucky stars that you don't need to resort to such measures. It's the whole, "until you've walked a mile in someone elses shoes" sort-of-thing. No pun intended.

And now what you've all been waiting for:

As you can probably see, they're working! The squeaker is in the heel, so every time Jesse squeaks, it means he's walking flat-footed, instead of on his toes. I'm a happy mama!

Many thanks to Amy, who suggested this to me! Any thoughts of becoming an occupational therapist Amy?

Poop

2010-03-15T13:53:00.001-02:30

I know poop seems unrelated to Jesse's diagnosis, but I have a very big suspicion that it has a lot to do with it. So I'm documenting this here too. Jesse's poops have been nasty, nasty, nasty for several months now. Usually he has several each day. They're mostly very loose. Occasionally, he'll go up to 3 days between poops (with much discomfort and acting out), but then when he goes, it'll be either a normal poop or a loose one.

So last night, when Jesse had a blow out, it was really nothing new. Except that this poop left a chemical burn on Jesse, similar to a bad sunburn. It's even on his thighs where it leaked out of his diaper. And yes, his diaper was changed right away. The burn was still there this morning.

Poor kiddo.

What a breakthrough!

2010-03-15T13:09:00.000-02:30

I feel like the big brick wall I've been bashing my head against for so long has started to crumble. We had Jesse's weekly speech therapy appointment this morning. Jesse's SLP, M., was THRILLED with his progress! I took my Flip video camera with the video of Jesse talking in the bathtub from last night and showed her. So right away she tossed her plan for incorporating signs into his therapy and wants to dive right into increasing his vocabulary and getting him saying things spontaneously.

During the appointment she got him to say "eat" and "bus." He's also now saying "bye." I can hardly keep up! She gave me some tips for how to play with him and encourage spontaneous talking and new words. Such a productive 1/2 hour!

In other news:

We had our follow-up with the physiotherapist. She gave me some more information sheets on how to deal with the sensory issues. We have some proprioception work to do with him. She's pleased with his range of motion in his ankles, but thinks that he could tighten up if he continues to toe walk so much. She advised me to do some stretches with him and keep an eye on his range of motion. She'll keep his file open, so that if I need to, I can call her up and make an appointment and we can get Jesse right back in to see her without the
wait. She did think Occupational Therapy would be a good idea though, to help with the sensory issues, and I will be asking for a referral to OT at our appointment with Dr. C on Wednesday.

I also spoke with the social worker, J., this morning. We still don't know when we'll be assigned a senior therapist. It was supposed to be a 2-3 week wait. It's now been 4 weeks. And J. said that she "hopes" it'll only be "another week or so." So frustrating! I told her that this makes it REALLY difficult in terms of hiring a home therapist. They want someone hired by the next ABA training session (April 6-8). But how am I supposed to hire someone when I have no idea how many hours I'll be hiring someone for? I don't know if it'll be 15 hours, 20 hours, 30 hours? Something in between? Who would even be willing to take a job if they have no clue what kind of hours I can offer them? So I'm sort of at a loss as to what to do about that right now. I guess I just have to keep my fingers crossed that someone will get the lead out get moving on this.

I have to focus on the positive though, right? And I am. I'm going to work on Jesse's speech with him and do as much as I can. He's already come SO FAR in just the last couple of weeks. It's actually really exciting!

"esse's!"

2010-03-15T01:00:00.008-02:30

In case you can't read the title, that would be "Jesse's!" without the "J." Our awesome kiddo is saying his name again! He's dropping the J, but we still understand him. And it's quite obvious that he's referring to things as being his.

And not only that, but tonight he really blew us out of the water. Nearly literally. Tonight he added another...oh, six words to his vocabulary!!!

In case you didn't that, it's "nose," "eyes," "ears," "hair," "knees," and "toes." They weren't all that clear in the video, but he did say them all more clearly at some point this evening.

And yes, I did a dorky little celebratory dance. :)

Frustration

2010-03-12T16:02:00.001-03:30

It's been 4 weeks since our initial meeting with the social worker. We were told then that a senior therapist would be assigned to us within three weeks. It's now been 4 weeks. Four LONG weeks. I called and left a message with the social worker, but she hasn't called me back. This is just not sitting well with me! The senior therapist is supposed to do 3-4 weekly appointments with Jesse to help determine his therapy needs. Until then, we don't know how many hours of ABA therapy per week Jesse will need. How are we supposed to hire someone when we have no if we're hiring for 15 hours per week, or 30? And a little bit of guidance as to what qualifications or characteristics of skills to look for in a home therapist would be helpful.

Somebody needs to get with the program! Argh!

Weirdness

2010-03-12T02:35:00.000-03:30

I do realize that I've been posting like mad. It'll settle down in the next week, I promise. I have 4 12-hour shifts in the next week, so I won't have much spare time. But I HAD to document this so that I wouldn't forget it.

Today at the gym, Jesse started running around with his head held to his shoulder. I think it was the right shoulder, but I could be mistaken. He did it a few times. And I'm trying to remember if he had his arm raised or not. It reminded me of what he does when he's pretending to talk on the phone sometimes.

Very weird.

Doubt or Denial?

2010-03-12T00:03:00.000-03:30

Have I mentioned that there are times that I really doubt Jesse's diagnosis. I mean, REALLY doubt it. Today at the active play time at the local gym, Jesse approached a mama and her sleeping baby. He gently patted the baby's head, gave her a kiss, and lightly nuzzled her. Then he pointed out the baby's ears and eyes and nose to me. He was captivated by this little baby girl. Totally made my heart melt. And he's been so insistent on us playing with him too. He says "Mom" or "Da," points to a chair at his little table (indicating he wants us to sit on the teeny tiny chair that we're both afraid we'll crush) and the goes on to pretend to serve dinner and to eat and drink.

And then I compare Jesse to age-matched peers and I come crashing back down to earth. They're talking in sentences. They're singing. They're engaging other children their age in play.

So I guess my doubt is really just denial?

Book!

2010-03-11T16:29:00.001-03:30

We've had a small success! Jesse has finally let me read him a book! It's called "Dog" by Mathew Van Fleet. It's very simple. No story really, just different kinds of dogs. Jesse loves the pull tabs and tactile stuff in there. And he'll actually sit through the whole book. First.time.ever!

Words

2010-03-11T01:25:00.004-03:30

Jesse is now 26 months old. Time sure flies. Since Jesse's vocabulary changes so much (gets larger, then smaller, than larger, then smaller....you get the idea) I thought it would be a good idea to document what he's saying every month or so. It'll give me an written record of his progress. So here goes:

Mom, Momber, Bamber (refers to me)

Da, Daddy (refers to Steve)

Josh (in reference to his cousin and his uncle - sounds like "dosh")

hi

baby

up

juice (sounds like "dooce")

pop (both in reference to popping bubbles and a couple of times to refer to his grandfather)

bubbles (sounds like "babas" - this is new as of today)

thank-you (sounds like "ah-su," which doesn't really sound like thank-you, but we're convinced that's what it means)

no

this

oh

boo

uh oh

This list has grown nicely in the last week or so actually. Juice, pop, bubbles, no, baby, and hi are all pretty new. (Though he has had some of these in the past and lost them for a significant period of time.) It's still a far cry from the 200+ words he should have by this point, but it's progress, right?

***Don't mind me if this list changes over the next day or so...I might have missed a couple

Light bulb moment

2010-03-10T00:31:00.002-03:30

I hope I don't have to pay Dr. Phil every time I use that, but it's the easiest way to describe how things clicked for me when I watched Dr. Temple Grandin's lecture. At about 00:02:43 she describes auditory issues in kids with ASDs. Even though auditory threshold ("hearing") is normal, their ability to hear auditory detail can be impaired. In addition to apraxia, I think that this may be part of why Jesse has such trouble with speech. One of the reasons I think this is because of his animal sounds. He makes the sounds for dog, cat, duck, and bear. But he drops the first part of each sound. Instead of "woof" it's "oof." So instead of "meow" it's "ow." Instead of "quack quack" it's "ack ack." Instead of "roar" it's "argh."

Here's a video to demonstrate what I mean. This was taken at the beginning of January of this year, just before Jesse's 2nd birthday.

The words that he has right now that start with a hard consonent sound (i.e. "mom," "da," "baby") are words that we've worked a lot on and enunciated the hell out of to try to get him to repeat. He has a lot of trouble acquiring words...a lot of trouble with consonant sounds. For example, he says "asu" for "thank-you."

Of course, I could be completely off the mark here and this might not be an issue at all. Either way, I hope that Jesse's new SLP can give us the tools to overcome whatever obstacles are in the way of Jesse being able to communicate with us.

And I thought I'd throw this in here...just because he's cute as hell:

Doose!

2010-03-08T12:35:00.001-03:30

We had our first appointment with our new SLP this morning. It went REALLY well. I'm more than pleased. The SLP, who I'll refer to as M., seems to know her stuff about ASDs. Jesse really seemed to be comfortable with her, and I was too. She asked me lots of questions and took my responses and concerns seriously. I also discussed with her one theory I have about Jesse's speech issues (again, I'll go more into this later). And she suggested that Jesse may have some apraxia, which is basically a motor issue affecting speech. I'm definitely thinking that this is a possibility.

Overall, M. was very pleased with Jesse. Jesse is very eager to communicate and does interact pretty well. So the big thing is to just get him communicating and expanding his vocabulary. She suggested working on both signing and speech. If apraxia is indeed an issue, then using signs until his motor skills catch up should be incredibly helpful.

Oh, and after our appointment, Jesse and I headed to McDonalds so that Jesse could play in the playroom to burn off some energy. Before we got out of the car he reached for his sippy cup and said "Doose!" (which is Jesse-speak for "juice"). That's the first time he's said that word unprompted. These are the little successes that keep me going.

Finally

2010-03-08T01:30:00.001-03:30

For the last 5 weeks since Jesse's diagnosis, I've been cycling through avoidance and denial. Usually, when it's something that affects my child, I dive in head first and research the hell out of it. Not this time. I'm not sure why. Maybe because I don't want to admit that this is really happening. Perhaps because I'm afraid of what I'll find out. In the meantime, I've been going through the motions...scheduling appointments, going to doctor's offices, therapy appointments, meeting with the social worker to get the autism intervention program started, posting job ads. I also have my little project on my other blog There's Snow Place Like Home that's kept me busy. Kept my mind off of the big, fat elephant in the room.

But I couldn't avoid it forever.

These past couple of weeks I've been messaging back and forth with another mama with a son who has a son just a couple of months older than Jesse. She found this blog and realized that Jesse sounded very much like her little boy. She decided to get the ball rolling and get some evaluations. And even now, even before a diagnosis (or not, depending on the outcome of the evals) she has been researching the heck out of this. And our discussions have made me start to question things. We're all set to hire an ABA home therapist and do the training ourselves, yet we don't even know if this is going to help Jesse. We don't even know if this is going to HURT Jesse. I feel like I've let my son down, in a way, by going with the flow, and not figuring this stuff out for myself. I didn't go with the flow during my pregnancy. I didn't go with the flow during his birth. I didn't go with the flow when all the doctors were telling me Jesse was fine. So why now?

So I've started researching. As of last night, I started reading a blog this other mama linked me to, called A Little Bit Autistic. I haven't read it all yet...I'm starting from the beginning. And I can't say that I agree with all, or even very much of, what this blogger writes (though I have to say, I admire her honesty, her intellect, and her determination in finding the most appropriate treatment for her son). But this blog has given me a ton of food for thought, and provided links to some awesome resources. I've watched a lecture given by Temple Grandin on High Functioning Autism (HFA) and Asperger's (posted to Youtube). Some of what she said early in the lecture regarding sensory issues really struck me. (I'll post more on this in the coming day or so.) All of this has also given me the motivation to start reading the books I've ordered. I'm starting with Changing the Course of Autism. So far I've gotten through the Foreward, written by Katie Wright, daughter of the founders of Autism Speaks. What she has written has taken my breath away. Her son was also developing normally, and then suffered regression that lead to an autism diagnosis. He suffered with sleep issues, waking hourly overnight, and gastrointestinal issues, such as horrible diarrhea and food strikes. But the fact that, with the right care, her son is now making leaps and bounds in his development, is very reassuring, and gives me hope.

So, suffice it to say, I've finally dug my head out of the sand and I'm gearing myself up to face this head on. Not because I want to, but because I need to.

We're in business!

2010-03-04T16:57:00.001-03:30

No, not really.

But I do have a business number now. Unfortunately, it's not because I'm starting my own cloth diapering business. (insert sigh here) I had to register for a Business Number with the Canada Revenue Agency so that we can hire, and pay, a home ABA therapist for Jesse. So that's done now, and I have placed an add with the HRDC job bank, which should be posted by tomorrow. I'm hoping it yields lots of great candidates. The listing will run for 2 weeks, ending on the 19th, and then we'll go through the applications and call some people for interviews. I'd really like to have someone hired by the time the 3-day ABA training takes place April 6th-8th. I'm starting to feel the pressure!

In other news, we now have some stretches/exercises to do with Jesse. His right ankle is getting tight again. We have a speech therapy appointment Monday morning (which will be covered up to $1000 yearly! Yay!). And Steve and I are going to a support group meeting tonight (NOT shopaholics anonymous, it's for parents of kids who are newly diagnosed). I hope it's helpful.

My Time Management Skills are Getting a Run for their Money!

2010-03-02T02:19:00.000-03:30

Oh, boy....

We had our second appointment with the social worker today (well, I guess it's now yesterday....Monday, I mean). It was all about how to go about hiring a home therapist. Though the cost of the therapist will be paid for by the provincial autism program, Steve and I will be considered the employer. We have to get a business number, hire an accountant/book-keeping service, and do all the advertising, interviewing, and hiring ourselves. It's quite daunting! The social worker is hoping for us to advertise this week, start interviewing mid-month, and have someone hired and all the paperwork done by the time the ABA training session comes around the first week in April. Just submitting all the job postings and reading through resumes is going to be so time consuming! And then there's the interviewing! I really hope we can get this done in time!

Tomorrow (Tuesday) morning we have an appointment with a physiotherapist (PT) who works with kids on the spectrum. I'm hoping she'll be able to give us some direction regarding Jesse's toe-walking. He walks on his toes much more now than he does flat-footed...even in boots! I'm so worried that he'll develop another contracture and require casting again. I do NOT want to deal with ortho again! (But I think that's a story for another day.) The physiotherapist should be able to tell us whether or not we need to get Occupational Therapy (OT) involved. After his appointment we'll be getting Jesse's bloodwork done. We'll be at the hospital anyways, so it's as good a time as any.

We should have a senior therapist assigned to us at some point this week, or early next week. This person will over-see Jesse's home therapy and his progress in general. She will be a sort of mentor/supervisor for Jesse's home therapist. She'll be coming to our home once a week for the next 3-4 weeks to assess Jesse's needs so that we can develop a treatment plan. I'm really anxious to meet this person. I really hope she'll be a good fit.

Monday coming Jesse will be seeing his new Speech Language Pathologist (SLP). She has a weekly 1/2 hour appointment available for Monday mornings at 8:30. I jumped at it, since Jesse is still wait-listed for the Children's Rehab SLP for another few months. I really need to check out our insurance, since I know speech therapy has limited coverage ($500 or $1000, I can't remember). At $60/appointment, we're going to run out quickly. But you gotta do what you gotta do, right?

March 17th we have an appointment with Dr. C. Steve wasn't with Jesse and I when we went for the ADOS, when Jesse was diagnosed. Since we expected Jesse to emerge from the ADOS with a clean bill of health, we felt that it wasn't necessary for Steve to take a day off work to attend the appointment with us. So this appointment with Dr. C will give Steve a chance to talk discuss this diagnosis with the doctor. It'll be good for me too, since I was too shell-shocked the last time to really comprehend what she was telling me.

And to top it all off, at some point we should be receiving appointments for audiology and clinical nutrition as well. And then there's the three day ABA training in April that Steve and I will be attending, along with our newly-hired home therapist (as long as we can find an afternoon sitter, that is).

Have I mentioned I also work 60 hours every two weeks?

At least I've found a way to keep track of everything. Google Calendar has been a God send. I've set it to E-mail me reminders of appointments 24 hours prior. I've also been able to share the calendar with my husband as well, so that he can access it anytime, anywhere, from his Google account. I highly recommend it if you have a crazy, busy schedule and poor time management skills!

I guess that's enough of an update for now. I need to get to bed. We have a busy day tomorrow!

Visit to our GP

2010-02-22T15:14:00.000-03:30

We went to see Dr. W today. She's been my GP since I was first pregnant with Jesse, and has been Jesse's GP since he was born. She hadn't received the assessment from the Janeway yet. That's a little frustrating. So I had to fill her in myself. Then I told her of my suspicions regarding food and Jesse's gastrointestinal issues. So she gave me a requisition to have Jesse's celiac screening redone, as well as a bunch of other labs. There are very few things that were left unchecked on the requisition. Obviously a finger prick isn't going to suffice for this. I so hate putting Jesse through bloodwork. It's never nice and ALWAYS results in tears. And I just feel like such a horrible mom for doing that to him. I'm going to wait to do the blood work another day though. I just wasn't up for it this morning.

I also asked for a referral to Clinical Nutrition at the Janeway for Jesse. We saw them before when Jesse was an infant and having what we thought were "allergy issues." They seemed very uneducated regarding breastfed infants (telling me he should have 3-4 8 oz feeds per day in addition to solid food....WTF?). I wasn't impressed then (obviously), but hopefully they'll be better now. Regardless of the results of the celiac screen, we're going to give the gluten free casein free diet a whirl. As long as we're able to provide Jesse with a balanced diet, it's not going to hurt. And it has the potential to help. Many parents say the GFCF diet has done wonderful things for their kids, so we're definitely willing to give it a go.

I'm also waiting on the private speech therapist to call me back. Jesse's former speech therapist only works afternoons, and Jesse will need morning appointments, since that is when he is at his best, and he does tend to nap all afternoon, so scheduling would be an issue there. So we get a new speech therapist. Apparently they're booking well into March already though. It's better than waiting for the Janeway speech therapist though, I guess. We're still wait listed til March.

So that's about it for now, I guess. Nothing overly exciting...

Holland

2010-02-20T01:47:00.001-03:30

Another mama I've been talking with has shared with me an analogy to what our family has been going through that might help other people have some idea of what this is like for us.

Imagine you had your bags packed and were getting ready to leave on a trip to the Caribbean. You were all ready to go. This trip had been in the works for months. You get on the plane, take your seat, sit back and dream of the beautiful sandy beaches, and the warm blue sea. Then the plane lands and you get off. ... in Holland. You are a little stunned, saddened, disappointed. The people there point out the beautiful tulips and scenery. Though it is beautiful, it is not what you had envisioned. It is not what you had planned, and not what you had prepared for.

Having your child handed a life changing diagnosis such as ASD is something like this. This is not what I dreamed of for my child. I had prepared, are best I could, to ensure my child grew up healthy, happy, and loved. But I did not prepare for this. I feel so ill-equipped to be an effective parent to my child. And I am sad. I'm sad that my little boy's life will continue to be filled with specialist and therapist appointments. That he has a label. That he may be seen as "different" and picked-on because of it.

Am I disappointed by my child? Absolutely not. Do I love him any less that I did before? Hell no! I have been, and forever will be, completely in love with my beautiful little boy. He continues to amaze me every day. He is the smartest, brightest, most loving little boy I could ever be blessed with. I wouldn't trade him for all the "normal" children in the world.

But I just don't know yet if I am prepared for this destination.

~~~~~~~~~~

***Edited February 22, 2010 to add:

Well, neither myself, not the mama that shared the little analogy with me realized that it was actually a short essay (I guess you could call it that) written by Emily Perl Kingsley in 1987, whose child was born with Down Syndrome. (Thanks Lauren for pointing this out!) And it's Italy, not the Caribbean, though I have a feeling showing up in Holland with your bag full of bikinis and sarongs might be a bit more analogous to what we're experiencing. So, without further ado, here is Kingsley's essay:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan.

They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Intake

2010-02-17T13:05:00.000-03:30

Steve and I had our intake appointment with the autism program social worker yesterday. Talk about information overload. The basic gist is this:

-we'll be assigned a senior therapist in about 3 weeks
-the senior therapist will see Jesse once weekly over 3-4 weeks to evaluate his needs
-we then go to an ISSP (individual support services plan) meeting, attended by all the people who'll be involved in Jesse's therapy, to make decisions regarding the treatment plan
-Steve and I attend start the process of hiring a home therapist
-Steve and I attend the 3 day ABA (applied behavioural analysis) training session

Over the course of the next 6-8 weeks, we'll also have appointments with the autism program's psychologist, Jesse's neurologist, the physiotherapist at the Janeway that works with kids with PDD, Jesse's GP, the social worker (again), and possibly others. It's getting difficult to keep track of it all.

I was hoping to possibly make use of the critical illness insurance that my parents have purchased for Jesse - using it to cover lost income while I took a leave of absence from work - but I think I'm going to save that for if/when we truly need it. The autism program here in NL covers the cost of ABA home therapy. As a treatment, it's shown the best outcomes for kids with ASD. However, not all children do well with ABA. So if it comes to the point where we're considering other treatment options, we'll have to pay out-of-pocket for those, as they aren't covered by the provincial health care system.

I guess I'm going to have to get really good at time management.

New Words!

2010-02-15T12:48:00.000-03:30

So, in the past few days Jesse has learned two new words! He now says "baby" and "no." It's so adorable when he says "baby" and not quite so adorable when he says "no" but I'll take it anyways.

I know this isn't they typical brag of a mama of a two-year-old, but language has been a HUGE challenge for Jesse. Jesse had about 10-12 words by his first birthday. Then, between the ages of 13 and 15 months, he lost all but a couple of them. A couple of times he'd say a new word and then never say it again. At my cousin's wedding last August, Jesse said "dancing" twice (in context!) but then never said it again. He also said "kisses" around the same time, but hasn't since. This past Christmas while my parents were visiting Jesse went from saying around 5 words to about 10, but then lost them again after they left.

This pattern of language growth and regression was the big sign that tipped me off about 10 months ago that something just wasn't right. Of course everyone assured me that Jesse was just a mover, not a talker and that a lot of boys talk later. Our family doctor sent the referral to the development team at the Janeway just to reassure me. But then other issues were being dealt with (particularly Jesse's heel cord contracture) and the speech thing was no longer our number one concern. We DID get in to see a private speech therapist (the wait for one of the Janeway's speech therapist is about 14 months...we're still waiting) and she did an assessment and gave me a bunch of suggestions on how to help encourage language development. But they didn't help. For the longest time I felt like I wasn't doing it right or talking to him enough or I was doing something wrong. I still feel that way a lot of the time, but at least now I KNOW that there's something going on other than just a speech delay. And I know that I don't have the knowledge or skills to deal with it on my own.

Pretty soon Jesse will be getting consistent, intensive in-home therapy to help him learn to talk and to work on his other issues. For right now though, I'm going to celebrate these new words and hope they don't disappear.

My Funny Boy

2010-02-13T13:37:00.000-03:30

I'm taking a break from the seriousness for a minute and sharing some of my favorite moments from the past 24 hours.

The first happened yesterday after his nap. Jesse wanted to nurse, of course. (He always wants to nurse.) So I nursed him. I also "nursed" his baby doll. Then my kiddo reaches for the TV remote and holds it up to my boob. Who knew electronic equipment got thirsty?

The second time my little boy cracked me up was this morning. We were all chilling out in the master bedroom watching some of the Olympic coverage, when Steve took it upon himself to give me a foot rub. (The man knows how to please.) Jesse decided he wanted in on the action and stuck his feet out to his father. I had to share my foot rub action with a munchkin. Though, to be fair, Jesse did pay it forward. Jesse treated his baby to a foot rub afterwards.

And lastly, was when, shortly after the foot rub funny, Jesse's baby gave me zerberts on my belly. Jesse made the zerbert noise and everything. Hi-freaking-larious.

God, I love this kid!

Appointment updates and an interesting article

2010-02-13T00:27:00.000-03:30

We have our intake appointment booked with the social worker. It's for Tuesday, February 16th at 10:30 am. That will start the ball rolling with the whole Early Intervention Program. I'm both looking forward to it and dreading it. I want to get this going, get my little boy the help he needs. But at the same time, it'll be confirmation that this is actually all happening. That it's not just a really long bad dream. I guess it's better I face it sooner rather than later though, right?

Then in mid-March Steve and I have an appointment with Dr. Crosbie at her office to discuss things. I was hoping we'd get in sooner, but she's one busy chick. I really want to talk with her more about the ADOS and the scoring, and about her thoughts on these "rapid gains" that Jesse is making, especially since I'm not exactly sure what she's talking about. I'd like to believe her and be optimistic about this, but she was also the one who told me not to worry, that Jesse wouldn't not come out of the ADOS with a diagnosis. So I'm a bit skeptical.

Lastly, I came across a very interesting article on autism and it's causes and treatments. It's from eMagazine and it's called The Search for Autism's Missing Piece: Autism Research Slowly Turns its Focus to Environmental Toxicity. It's actually a very good read, and much less biased than most pieces written on the topic. Of particular interest to me was this part (and the really pertinent parts are bolded by me):

~~~~~~~~~~~~~~~~~~~~

DAN! doctors, despite their detractors, tend to focus on one physical attribute common to autistic kids that’s scientifically indisputable: As many as 70% of them have something wrong in the gut. Common maladies include what’s known as “leaky gut syndrome,” in which the intestinal lining is damaged, allowing toxins and waste to enter the bloodstream; bowel inflammation and an overgrowth of harmful bacteria and yeast. These kids can be constipated often, or prone to chronic diarrhea. Stools are often horrible-smelling (well beyond the norm) and the act of pooping can lead to bleeding. And besides the cramping, pushing-on-their-bellies behaviors, autistic kids with these complications often have outward physical signs: bloated bellies, dark circles under the eyes, pale complexions.

Back in 1999, a study of 36 severely autistic kids by doctors at the University of Maryland School of Medicine found the first link between autism and a series of gastrointestinal disorders. Nearly 70% of the kids had acid reflux and 58% had chronic diarrhea because they could not properly absorb carbohydrates. Many of the kids could not sleep through the night as a result of their constant discomfort, which in turn was thought to contribute to their behaviors of irritability and aggression. Then, in March 2009, researchers found what looks to be a gene variant linking these two conditions. Published in Pediatrics, the researchers found that the specific gene variation called the MET C allele affected both brain development and gut processes. After studying 214 families with at least one child with autism, researchers found that only kids with both autism and gastrointestinal problems had the gene in question. In a subsequent article in U.S. News & World Report, the author concluded, “This line of research may turn up targets for new drugs.”

~~~~~~~~~~~~~~~~~~~~

The reason this section struck me so much was that Jesse changed at 6 months when I started him on solids. until then he'd been perfectly healthy. It was right after I started him on solids that had a nasty bout of diarrhea for 2 weeks (it was dark green-black watery stools, that often included blood streaks). This was in the absence any other indications of infection. It was then that his sleeping went to hell as well. I thought he had food allergies, but he didn't. He continued to react to food with gluten in it, so I removed gluten from his diet and he seemed to do fine. I added back foods with gluten in them and he did OK for a while, though he did have occasional bouts of constipation followed by diarrhea. But these past couple of months he's been constantly having loose stools or diarrhea and the smell is absolutely horrible. He also went on all those food strikes (between around 8 months and 16 months). This article seems to be leading to confirmation of what I had been suspecting for a long time. Again, people kept telling me he was fine (the allergy specialist, the gastroenterologist) even though I knew that wasn't the case.

So, where do we go from here? (On the gastrointestinal issue, I mean.) I think I'm going to make an appointment with our GP so that she can order blood work to screen for Celiac Disease again. He tested negative last time, but I doubt that he'd been on a regular diet long enough. I really think there's a possibility that it was a false negative. Stranger things have happened.

The Assessment

2010-02-12T03:57:00.000-03:30

We received a copy of Jesse's assessment in the mail a couple of days ago. It really helped me understand what Dr. Crosbie had been trying to explain to me last week in the office, when I was too stunned to think. I still have a lot of questions, of course. Hopefully many of those will be answered by the social worker next week and by Dr. Crosbie herself when Steve and I meet with her to discuss Jesse's case.

I've been debating on whether or not to post some of the assessment online. I wasn't sure I wanted that info out there for the world to see. But then, today, I took Jesse to McDonald's to play in the playroom while I had a cup of coffee. A father and his young son sat next to us while I was getting Jesse ready to leave. He asked me how old my son was and I told him Jesse had just turned two. Then he asked me if he was talking much. I said, "no." (We get these comments nearly daily, since Jesse is usually really quiet in public.) And then he said, "Yeah, my little guy will be three in August and he doesn't say much either. They say it's a boy thing." I didn't know what to say. Should I have told him about Jesse? I really didn't know what to do. What made it even worse was that this little guy reminded me very much of a family member who also has Autism Spectrum Disorder. If I said anything, would it have upset them? I really don't know.

So this is the big reason why I'm posting this. In case anyone out there has concerns about their child but has had it beat into their head that their child is "fine." The lesser, but still important reason, is that I'm getting tired of the "you're crazy" or "don't be silly" reactions whenever I've mentioned something being "not right" with Jesse (even though I, myself thought that it was just a speech issue). Maybe this will help people see why I've been concerned. I'll skip through a lot of it and focus on the actual assessment part of it. This was written by Dr. Crosbie but I've added my own notes in italics, to clarify and/or elaborate. Here goes:

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Jesse Snow is a young man reviewed through the Development and Rehabilitation Division as an urgent pediatric consult on December 7, 2009. (I didn't realize that a ten month wait was still considered an "urgent pediatric consult." Can't say I'm surprised though.) At that time presentation was characterized by a loss of speech. He had 9-10 words at 10-13 months of age and subsequently lost them. There were concerns with respect to motor delay but he did have a tight heel cord with contracture on the right foot and [had been] serially casted. (I just want to note here that Jesse's prior toe-walking was labelled "idiopathic", even though his wonderfully perceptive physiotherapist had mentioned that suspected it was a sensory issue. We're now dealing with this being an issue again, as he toe-walks more than he walks flat-footed.)

Family history is positive for....Autistic Spectrum Disorder....(I'm not comfortable giving more info than that, since it's not my (or my child's) medical history.)

Parents have been less and less concerned about Austistic Spectrum Disorder as time has gone on. (In very large part due to everyone and their dog telling me Jesse couldn't possibly have autism.) Jesse is being followed by Speech-Language Pathologist, M.S., who felt primarily his language was behind. (He hasn't been seen by her since last summer.)

At the age of 23 months words included mom, dad, hi, Jess, sometimes boots (and boobies)....

Parents note response to name is variable however he understands everything that is said. During the course of the office appointment he was making tea, pouring, stirring, and giving cups of tea. No repetitive play was noted. There was no unusual television shows watched. He eats a variety of food, continues to drink from a sippy cup, and is breastfed 2-3 times a day.Some early imaginary play was noted in the office. There is some contact with other children at playdates and a play group....

Sleep is generally non-problematic. (Is not *now* but was for 18 months of his life!) He previously hand flapped but this has extinguished. There was no hand gazing or finger gazing noted....

Abbreviated physical examination revealed a long lean child....Neurologically he appeared to be intact....

Given the concerns around language regression and some of the inconsistent response to name decision was made to proceed to complete an Autism Diagnostic observation Schedule (ADOS) Module 1. This was complete on February 1, 2010.

Jesse participated quite readily in all items on teh ADOS. The ADOS was administered by C.P., Occupational Therapist with assistance from D.S., Speech-Language Pathologist. At the time of assessment, Jesse was 2 years, 3 weeks of age.

While Jesse did perform many nice communication attempts throughout the assessment it was overall felt that his use of eye contact and social interaction were not typical for his age.

The scoring of the ADOS is divided into a communication and reciprocal/social interaction domain. The communication domain is looking at the frequency of vocalizations, use of stereotypic language, use of other bodies to communicate, pointing to point out things of interest as well as to get help, as well as gestures. Jesse obtained a score of 2 in communication which is at the autism spectrum cut off score. Reciprocal interaction is exploring eye contact, direction of facial expression, shared enjoyment and interaction, showing behaviour, joint referencing, response to joint attention, and quality of social overtures. His score of 8 in social interaction is just above the autism cut off of 7. His combined score of 10 is just above the autism spectrum cut off of 7 but below the autism cut off score of 12.

Overall it was felt, given the history as well as the curerent presentation, that the appropriate diagnostic label would be one of Pervasive Developmental Disorder Not Otherwise Specified. This is an Autistic Spectrum Disorder. This makes Jesse eligible for the Provincial Autism Intervention Program....

It needs to be stressed that Jesse is making quite rapid gains. (I'm not arguing, but I'm not sure what she was referring to here.) It is anticipated that involvement with the Autism Intervention Program can only serve to speed this up. My plan would be to repeat an ADOS when he is 3 years of age and review the need for ongoing programming....

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Is Jesse still Jesse?

2010-02-10T13:12:00.000-03:30

I wrote the following post last night while I was at work. It was actually a reply to a post in an online conversation I was having with another mother who's child has autism. I thought it belonged here as well.

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I keep telling myself Jesse is the same little boy he was before February 1st. Just because he has a diagnosis, or a label, doesn't change who he is. But after thinking about it, and I KNOW my son wasn't born like this. I KNOW that shit started happening around 6 months of age, and I have a feeling his diet plays a role in this (among other things, perhaps). So I'm kind of left wondering how much of Jesse is JESSE and how much of it is the PDD? I feel like my son is being obscured this....whatever you want to call it....disorder/illness/whatever it is.

I tried to get him to look at me today. I held him (he wanted to be picked up) and asked him to look at me. He shook his head and avoided making any eye contact. The only way he'd look at my eyes was if I asked him "Where are Mommy's eyes?" and he'd point to them and then look away again. That's not my son. We used to gaze into each others eyes (when we were nursing or cuddling or playing). Something has changed. And I think that's one of the reasons why I've been so stunned. Jesse was always "normal." This change has happened so slowly over the past year to 18 months that I've barely noticed it. When his Dr. Crosbie (the neurologist) told me after the assessment that he doesn't make eye contact, I was floored. He always had made eye contact. Even with our GP, he always made eye contact so she was sure that autism wasn't a concern.

So I don't know if Jesse *is* still Jesse. This is really eating at me. I feel like I'm losing my little boy.

Today reality hit me

2010-02-08T00:52:00.000-03:30

Jesse has Pervasive Developmental Disorder Not Otherwise Specified. He has an Autism Spectrum Disorder. My child has "special needs," a "developmental disability." He isn't like other kids. He might never be like other kids.

I just want him to be like other kids.

In the meantime....

2010-02-07T03:19:00.000-03:30

While we're waiting on the social worker to contact us to get the ball rolling in terms of the Early Intervention program and ABA therapy and all that, I've been doing a bit of research and looking around at things I can do to mitigate any roll the environment might have in all of this. One site that a dear friend has led me to is www.toxicnation.ca

They have a great list of the top 10 ways to detoxify. I'm slowing working my way through this information. It's going to take a lot of time and effort to make these changes, but I'm trying to make a start. High priority items include:

-trying to figure out if my Kitchen Aid cookware is toxic and needs replacing. If it does, I'll be going with stainless steel or cast iron.

-replacing all kitchen plastic (including mixing bowls, cooking utensils, etc...)

-replacing Jesse's bedding, including his mattress cover, sheets, and pillow. Replacing his mattress as well would be preferable, but an all natural mattress is PRICEY! We're talking $500-$1000. So I think I'm going to find some sort of organic cotton zippered mattress cover to go over it. I'm also going to try to find a used or low cost 100% wool blanket to felt and lanolinize as a waterproof cover for Jesse's mattress.

-buy organic cotton slip covers for our furniture

-getting rid of any toxic cleaners in the house. Right now I have some non-toxic and environmentally safe cleaners, but I think I'm going to try making my own as well.

-replacing our shower curtain. I want to buy a hemp shower curtain, as they're antimicrobial and have a tight enough weave to keep the water in. Again, they're pricey. I'll be searching for the best price one I can find. I'd rather not have to spend $100 for a single shower curtain.

I'm sure I'll think of more things I need to add to this list later. But this is it for today.

So much info, so little time....

2010-02-04T14:30:00.000-03:30

I've been hopping around the internet just trying to get an overview of things. I'm not wanting to dive right in just yet. I'm still trying to find my bearings. There is just SO MUCH I need to learn. I feel like it'll take me a lifetime to learn it all, but I don't have the luxury of taking my time. We need to get on this NOW. My head is swimming with all these new concepts and concerns. Right now, first and foremost in my mind is the role of diet in all of this. Since Jesse first started on solids at 6 months of age, I knew something was going on. I knew it. He had food intolerances right away. He got hives from oatmeal. He had a bout of the nastiest diarrhea I've ever seen for about 10 days, even though he wasn't otherwise ill. He had allergy testing done and had no food allergies. He was also screened for celiac disease, which came back negative, but now I'm wondering about the validity of that test. He hadn't been eating much food with gluten for very long before being screened. And now I'm wondering if his initial language regression after his first birthday was related to the introduction of cow's milk into his diet. I know it all sounds crazy, but at this point I'm willing to investigate anything that might be causing this and I'll do anything to make it better.

Sinking in

2010-02-03T03:52:00.000-03:30

Is it sinking in yet? Maybe. Or maybe I'm just too numb to deny it. I think this whole thing is complicated by the fact that Jesse seems so happy and normal. I mean, to anyone who is unaware of Jesse's diagnosis, Jesse is just a normal little boy. Sure, they'd probably pick up on the language issue, but other than that....clueless. I mean, that was ME prior to yesterday. And now I'm noticing things. Things that should have made this less of a shock. The toe walking is happening a lot more than I noticed. The echolalia.

And then there's the fact that this diagnosis explains almost everything we've been through with Jesse since he was 6 months old. The food intolerances (not explained by allergies) and gastrointestinal issues, the sleep issues, the heel cord contracture (which the physiotherapist felt was related to a sensory issue), and the speech problems (delay and regression). Why did I not put this all together before?

I guess it's all moot anyways. The past doesn't exactly matter very much now. We have to figure out where to go from here. I guess we'll be getting a call from the social worker soon. And I placed a $150 Amazon.ca order today for around 10 different books on autism. Maybe by the time they get here I'll be prepared to start reading them.

Day One

2010-02-02T03:54:00.000-03:30

There are certain days and events that will be forever burned in your memory. The sights, the sounds, the smells.... Even though I've been around for going on thirty years, I don't have many of these days. Getting my high school diploma, walking down the aisle, getting my first positive pregnancy test, suffering a miscarriage, and the birth of my son Jesse comprise my list.

And then today happened. My beautiful, perfect little boy was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified.

What does it mean? I'm not entirely sure. I do know that PDD-NOS is an autism spectrum disorder and that it scares the shit out of me. I've been avoiding google, because I'm not quite ready to dive into this just yet. I'm still adjusting to the shock of it all.

Jesse is the most wonderful little boy. He's incredibly loving - very generous with kisses and hugs. He flirts with pretty girls and ladies. He's very gentle around other children and adores older kids. He's incredibly smart (I know all parents say that about their kids, but other people have noticed this too). So how did Jesse end up with a diagnosis of PDD-NOS? I'll give you the long version later, but the short version, is that speech issues led us to an appointment with the developmental team neurologist, Dr. Crosby, who assured us that Jesse was almost certain a perfectly healthy normal little boy. But she suggested a team assessment just to completely rule out anything else. So we went to Jesse's appointment with the developmental team today fully expecting them to say to us, "What are you doing here? Your kid is fine." That didn't happen. After going over the assessment with the other team members (occupational therapist, speech language pathologist, psychologist?) Dr. Crosby met with us. In under two minutes my head was swirling with information that I was just failing to comprehend. "Autism spectrum", "Pervasive Developmental Disorder," "Social worker", "lead therapist", "therapy program".........

In a matter of minutes, our whole world turned upside down. Nothing has really changed. I mean, Jesse is the same child he was yesterday. Still the same happy, loving, wonderful child he was yesterday. Right now I have to remind myself of that constantly. But everything else has changed. Yesterday I was planning on starting a new business venture that would, hopefully, in the future, allow me to reduce my hours away from home. We've been planning to grow our family. Both of those are on hold indefinitely now. I have so much to do and learn. I have to help Jesse get better. I don't want my little boy to have to deal with a world that views him as "damaged." I just feel so ill-equipped to do this.