Occupational Therapy

One of the services Isaiah receives is Occupational Therapy through the Children's Hospital of Wisconsin - Fox Valley. Isaiah has so much fun with Miss Kathleen. She is helping with exercises that will build his muscle tone and various self-help skills, such as eating with utensils and dressing.

One Year Later

We took Isaiah to Madison today for a one-year follow-up appointment with his developmental pediatrician at the Waisman Center. It was a pretty uneventful visit - which we like. :)

Here is a brief summary of the things we discussed with the doctor:

1) Leg cramps - Isaiah continues to get "Charlie Horse" cramps in his legs while he is sleeping. We notice them more after he has spent a lot of time in heavy physical play, such as climbing or running. Usually after one dose of Tylenol, the cramps go away for the night. For now, we are to try 1 tsp of Tylenol every night before bed.

2) Constipation - Isaiah often goes 4-5 days between bowel movements. When he starts to get backed-up, he becomes quite irritable, eats less, and misbehaves more. The doctor suggest trying Miralax, as we have been trying fiber gummies but they obviously aren't doing what they should.

3) Toilet training - my BIGGEST frustration (and source of feeling like a parenting failure). Isaiah talks about the potty, yet he absolutely REFUSES to go. The doctor said that the worst think we can do is fight with him about it. He has to decide. We need to determine some type of reward. She suggested making an attractive Treasure Box with fun prizes from the Dollar Store. As a teacher - HELLO! I certainly can handle that, though I don't think it's going to work for getting Isaiah to go. I'll try anything, though.

So, bad news - there really is no way to convince Isaiah to go on the toilet. She does think preschool will help motivate him to go. Good news - we can have a prescription written for Pull Ups because he is over the age of 4 and has an Autism diagnosis. Next on the list to do - call insurance to see if they will pay for Pull Ups. If not, apply for Katie Beckett - which I probably should do anyway.

4) Diet - Isaiah has not been the best eater lately. Because he is still such a small little guy, the doctor suggested I follow-up the diet discussion with our regular pediatrician and possibly get a referral to see a pediatric dietician. At least when he gets picky he eats fruits and vegetables! It's protein and iron that we're concerned about.

5) Perseverative behaviors, such as Coke machines and elevators. Three things to try - distraction, substitution, and foreshadowing with the use of social stories. I'm going to try to find a special toy with buttons that we will allow him to push in place of the Coke machine buttons. I think we're going to need lots and lots of prayers to get him out of this behavior...

We won't see Dr. I until next summer. I'm glad we'll be going back because it's always good to stay connected with a specialist just in case. I'm even more glad that Isaiah is making so much progress and doing so well that we don't have to go back sooner. :D

- becky

Coke Machines

One of the things Isaiah really enjoys is pushing the buttons on a Coke machine. I think it is calming for him, but I'm not sure. He starts at the top, pushing all of the buttons from top to bottom, and sometimes names the color of the soda pictured on each button.

For the most part, this is not a big deal. It takes a couple of seconds, and then he is good to go. At times, however, it can be a problem. When we went to the Milwaukee Zoo, he was so overwhelmed by everything there was to see that all he wanted to do was push the buttons on Coke machines. And there are a LOT of them at the Milwaukee Zoo. We know. Isaiah pushed every.single.button.

- becky

Excellent Advice

I'm almost done reading the book Daniel Isn't Talking by Marti Leimbach. At the end of chapter 18, I came across some excellent advice.

Andy, a therapist, was talking to Daniel's mother who was concerned about what people (strangers) might think about her son when they see him out. His advice - "Other people don't have children with Autism. They are not entitled to an opinion."

I.Love.This.

- becky

Sometimes...

As Isaiah gets older, it seems as though we get more and more stares from people. Maybe it's because he is somewhat verbal, but not always in a functional way. Maybe it's because something in the room is too stimulating for him. Maybe it's because he doesn't understand what we are doing or asking him to do. Maybe it's because we have broken routine. Whatever the reason, it makes my heart sad.

Sometimes, though, a stranger will look at my child and see a little boy who does not appear to have developmental delays. This morning, I was pushing Isaiah and Mallory in the double stroller up to church for a pot luck picnic. An older gentleman was walking toward us, and Isaiah peeked his head out from under the awning and said, "Morning!" The smile on the man's face made my day.

- becky

Oh So Literal

Sometimes I have to giggle at the literal response that I get from Isaiah.

Tim was outside grilling today, and I was preparing the rest of lunch inside with the kids. A timer beeped, so I asked Isaiah to "open the door and tell Daddy, 'The timer went off.'"

Well, he did that all right.

But which door did he open?

Not the door to outside where Tim was grilling...he opened the refrigerator door and said, "Daddy, the timer!" It was the closest door to him, and I wasn't specific enough in my direction.

That one made me Laugh Out Loud!!!

- becky

Way Late EEG Update

So I have been really, really bad about updating this blog. We're busy. That's my excuse. I'll try to get better.

It turns out the neurologist is not entirely convinced that Isaiah is/was having seizures. In lieu of putting Isaiah through (potentially traumatic for him and quite expensive) tests, we have decided to monitor his staring spells. If we notice him zone out, we are supposed to pinch his finger. Should he respond, his staring spell is realted to his autism. Should he not responds, back to the neurologist we will go.

We're good with this decision. We have noticed so much progress with Isaiah over the last few months, with very few staring spells. It seems the time that he has them, he has a cold or is tired - and he responds when we pinch him (in a loving, yet please-respond-so-we-know-you're-not-seizing way).

- becky

EEG

Friday, October 8th - Isaiah's Early Childhood Special Education teacher, Barb A, called to talk with me about some concerns she and Isaiah's other teachers have about absence seizures.

Monday, October 11th - We took Isaiah to see Dr. Hunt, a pediatrician at Dr. Henry's office. (Dr. Henry is still on maternity leave, so we could not see our regular doctor.) The only way to know for sure is to have an EEG.

Monday, October 18th - I took the morning off work so that Tim and I could both be with Isaiah for his EEG. The prep was NOT fun. We were to keep him awake until midnight, if possible. Yeah, that didn't happen. Our child, who usually does NOT want to go to sleep was asking to go night-night at 7:50. Are you kidding?! We managed to keep him awake until 10:30 on Sunday night. The next step was to wake him up at 5:00. Yeah. He was NOT happy about that one.

Isaiah was quite squirmy throughout most of the 40 minute test. (He was still for maybe 1o minutes of it.) Next step - wait for a call from the pediatrician's office after a neurologist has had a chance to read the EEG. Hopefully, he was still long enough for the doctor to even be able to read the EEG.

Thursday, October 21st - Dr. Hunt called me herself. I always get nervous, but appreciate it at the same time, when the DOCTOR takes the time to call me. Isaiah has spiking at regular intervals in his left temporal lobe. (I have no idea what this means.) She explained as best she could, but I remained kind of fixed on the part of our conversation when she wanted to be sure that I understood that 1/3 of children with autism have seizures, but this is NOT that kind of seizure.

We could be looking at an entirely new issue. Yikes.

Now, we wait again. We wait for a pediatric neurologist's office to call us with an appointment. I let a week go by, but still had not heard anything. I called and left a message, but I am still waiting on a returned phone call.

I would bet money that if this were there child, they wouldn't have wanted this appointment made a lot sooner than it is taking for us to get our child in to see the neurologist.

- becky

More Cars Vitamins

Isaiah has never really been a fan of gummy fruit snacks. I think it's a texture thing. I was a little worried when I purchased him some Cars Multi-Vitamins. Unlike when I was a child, vitamins for kids are now the same texture as fruit snacks.

Well, Isaiah loves his Cars Vitamins. In fact, he even asks for them, reminding us to give them to him each day!

Here's the rub - we bought him some Cars fruit snacks, thinking he will now eat these. He does...kind of. I'll open a package for him, and he will only eat the red snacks. He leaves the purple, blue, and orange snacks - refusing to eat them. Wondering why? His vitamins only come in red.

- becky

Progress Communicating

Isaiah is continuing to make progress with his communication skills. He has learned how to tell us, "I can't do it," when he is having trouble with something and needs our help.

Funny story - last night, Mallory decided to sit on the Elmo potty. (She didn't go, but it was exciting that she wanted to try it out.) Well, Isaiah saw this happening, and he walked up to me, put his hand on my arm to get my attention and said, "I have to go potty." WOW! We rushed him in and he never did go, but we were ecstatic that he talked about it. I really think that they will both get trained at the same time. I think his watching Mallory go through it will be really good for his learning. For now, we will just be patient.

- becky

Current Services

Isaiah's tranistion back into day care has come with its share of challenges. Numbers are down, so he no longer has two teachers in the room. With only one teacher, he doesn't receive the same level of support from the day care that he had last year. It's only natural that he be expected to "blend in" with the rest of the class, but still frustrating, as he does need more support and assistance than some of the others in his room.

We are excited for the return of Isaiah Early Childhood and Speech Itinerant Teachers. Mrs. Barb will be with him primarily on Wednesdays and Fridays from 8:30-9:30. Mrs. Marion will work on speech for one hour each week. I haven't yet heard when she will go in to work with Isaiah, but we're hoping for twice each week for 30 minutes at a time. (I'm a fan of more frequent sessions for shorter blocks of time. Toddler attention span and all...)

To break down Isaiah's curret services...well, his services that will be up and running again with the return of the school year:

• 2 hours/week - Early Childhood Special Education
• 1 hour/week - Speech & Language
• 1 hour/week - Play & Behavior/Social Skills Therapy with a private counselor in Green Bay (Mr. James)
• 1 hour/week - Floortime Therapy

5 hours/week is a great start!

- becky

A Diagnosis

In August 2009, Isaiah began working with Outagamie County's Birth to 3 Early Intervention Program. We learned in October 2009 that he was to be classified as SDD - Significant Developmental Delay. He began receiving services through the Appleton Area School District around the time of his 3rd birthday (November 21, 2009) in the areas of speech/language and early childhood.

I spoke with one of Isaiah's Birth to 3 teachers during his last week of services regarding signs of Autism. At that time, we made an appointment with his pediatrician, Dr. Henry, who referred us to a developmental pediatrician out of the Waisman Center at the University of Wisconsin - Madison. I promptly called that office to make an appointment...for 8 months later. That's right! It really does take that long to get in to see the doctor.

Isaiah's appointment in Madison was on June 29th. I had filled out a great deal of paperwork and sent it thru the mail several months ago, and we spent the first 45 minutes or so of the appointment discussing its contents and answering some questions about Isaiah that Dr. Iyama had. Dr. Iyama then played with Isaiah for the next 45 minutes or so before we filled out a behavioral checklist with the doctor, similar to the M-CHAT. Once everything was taken into consideration, it was determined that Isaiah does fall on the spectrum. His official diagnosis is ASD - Autism Spectrum Disorder.

The purpose of this blog is to keep everyone informed of Isaiah's appointments, therapies, and progress. I will do my best to update this regularly. You might want to subscribe to the RSS feed, so that you are aware of when it is updated. My first post is loaded with extra links. As I use terminology that is new to us (so maybe to you, too), I will insert links so that you can learn with us.

- becky