Many, Many Words About Jack

Oh Jack-Jack, how we love you!

 It’s time to sit down and record the happenings in our 4 year old Jack’s world. Jack has been a very different child to raise and it finally became time to find out why.  The bottom line is that he has been diagnosed with autism.

I have really tried to remember back to Jack as a baby and toddler.  Unfortunately, with him being the 4^th child it means I didn’t quite catalog his progress as carefully as I should have (or really at all).  I do not believe he had any delays, other than the odd fact that he would never, ever wave at people.  He memorized things very easily, which made me think he was perhaps advanced. I loved it when he would recite the Pledge of Allegiance as a 2 year old during his brother’s preschool co-op.

I believe that I started watching him and questioning his behavior around the time he turned 3 in August 2013.  But I was quite pregnant and then had a baby, so I pushed worries to the back of my mind.  After all, he was only 3, right? Sometimes when he would talk he would slur his words together and it sounded like baby talk. But then he spoke clearly other times, so I decided it was ok. He started flapping his arms and jumping around when he got excited, and it was so cute! And he always walked on his toes, which I thought he’d grow out of eventually.

I took him to a First 5 class in January (basically a free mommy & me music class) before he was 3 ½ and I started to get frustrated with him. Why did the other kids sit and sing and listen and raise their hands and answer and I couldn’t get Jack to come and join the group? Why did the other kids focus on their little craft projects and he would freak out when I put a paper in front of him?  I was standing there at the class and a book in their library on autism caught my eye.  I opened it and found something disturbing—arm flapping can be a sign of autism!  Suddenly it was not cute anymore! (I later read that toe-walking can be a sign of issues as well.)  I scheduled a Developmental Check Up at First 5, as well as with our pediatrician. Without my prompting anything, the doctor mentioned possible autism, mostly because of his lack of eye contact, or really lack of any interaction with her at all.  First 5 set us up with the school district to test him for speech delay.  I also called Tri-Counties Regional Center and set up testing with them. I started scouring websites on autism and checked out many books out of the library to start to educate myself on the subject.

I also started a list of his behaviors, some of which I haven’t yet mentioned are: he gives little to no eye contact, he will not hold a writing utensil or even attempt to scribble, he repeats quotes over and over (mostly from movies), he plays with his hands together and stares at them, he sits and stares at random times, he does not answer questions—he either repeats the question back or doesn’t say anything, he is very repetitive with certain things like reading the exact same book over and over with the same comments every time.

The next few months were filled with anticipation and waiting. Testing involves many steps and way too much waiting in between those steps. All I was reading was that early intervention was the most important thing to help correct behaviors, but all I was doing was waiting without much direction on how to help him. What a frustrating time.

The school district finished testing first, this was in June. In the IEP meeting with them they did not conclude that he was autistic. They suspected Auditory Processing Disorder, which is where a person can hear but their brain garbles the message. This can’t be officially diagnosed until about age 7, but they figured that was the issue. They determined he had a speech delay, so he was accepted into their preschool speech program. We were thrilled with this outcome; he was not autistic and they would be providing services to help him with his speech. This plan was made at the end of the school year, so we nee ded to wait until school started in the fall for everything to start.

Like I said, we were happy with the outcome of the school district. But, I didn’t feel quite content with it. I turned all my efforts to learning about this auditory disorder and I kept wondering why I saw other behaviors in Jack that didn’t match up. I began to realize that I was probably going to have to piece together several different disorders to really explain our Jack.

Then Tri-Counties finally finished their testing in July. They warned me before I received their diagnosis that it might be different than what the school said. After his final evaluation, they told me that Jack was, in fact, autistic. I was actually fine with this, feeling that he really did match up better with the characteristics of autism. He was categorized as having mild to moderate autism. One great blessing I see is that Jack is quite calm and agreeable, not prone to tantrums and hyperactivity. And I am so grateful for the speech that he does have! There are so many things to be grateful for in Jack.

One suggestion the school gave us to do during the summer were both swimming and gymnastics. These are helpful activities because they get the mind and body working together. Swimming went ok. For gymnastics I put him in the lowest level preschool class and after 2 weeks they hinted that he might need to be in the mommy & me class and at the 3^rd class they outright said yes, please put him in the mommy & me class. He needed one on one help to get him to take turns, listen to directions, and to help him to physically do the moves. It was good, but what was even better was that we became acquainted with the occupational therapist who uses the gym’s facilities. We decided to get an assessment with her in August and found that he has some sensory integration issues, so we started going to her twice a week. Jack loves it and his speech and movement began to improve once we started, as well as his eye contact. Cynthia, the OT, involves all of our kids when they come so they can learn how to work with him at home.

Check out that eye contact!!

Preschool finally began at the end of August and it was good. I had informed his team at the school of his different diagnosis and they had to admit that it seemed more likely after watching him in class. Thus began another evaluation process that took months. He stayed in his speech class and enjoyed it, but we knew it really wasn’t catering much to his more complex needs. Another IEP meeting came in November and he was changed to the autistic class, meeting every day with increased time with the speech and occupational therapists. We have been through less than a week of this new class and changes are already apparent: he is talking more, engaging more, and he is HAPPY!

And how are we doing, you ask? Well, I will say that I am doing just fine with all of this. I feel such a connection with Jack that just wasn’t there before. In the past I was quite frustrated with what he couldn’t do, now I am understanding. I feel I am gaining some strategies to help him. I am amazed at the people and resources that have appeared to educate and help us. Our family seems to be rallying around him and is very loving and fun with him. I am grateful for all of his awesome qualities: he is quite hilarious and loves to cuddle. I love being with him.

We obviously don’t know how things will turn out for Jack. I am, however, thrilled at the progress he is making. I feel like we are on the right path, with loving and talented people helping him along.