Autism

September, 2007

Let's see... our adventure begins about this time last year.

It wasn't an overnight thing. He didn't just wake up one morning and have issues. But there have definitely been problems that have developed over time.

I noticed that Jayce had a huge vocabulary, but was only speaking in one word phrases. It wasn't too concerning, but since he said his first word by 9 or 10 months and had a decent vocabulary by 15 months, I kept expecting that he would continue to make those developmental leaps with his language. But he wasn't.

I mentioned it at his 18 month Well Baby Visit and got the standard answer "you can't compare kids. Boys are slower than girls. It will happen. It will be like a light bulb going off and then he won't stop talking!"

The realization came when I was at a local park with the MOMS Club. My friend's little boy is 3 weeks older than Jayce. She was relating a funny story about her son's understanding about her most recent pregnancy. The first thing that hit me was, "Wow, he really said a sentence like that?" and then I realized that Jayce wouldn't have had any understanding of the concept of "babies in the tummy". Yet Jaina understood that at age 2. She was just 2 years and 2 months old when I got pregnant with Jayce. And she understood right away that I had a "baby in my tummy" and could say things like "I want to give the baby a hug and a kiss!". The fact that Jayce would have only been able to say "baby?" and not understand anything beyond that was eye-opening.

So, I mentioned it AGAIN at his 2 year old check up. She recommended watching his speech and re-evaluating it in 6 months.

In the mean time, we went to another activity with the MOMS Club. A fellow mom watched as Jayce got overstimulated with the noise and the crowd. Then she watched as he got fixated on one activity for a length of time. She asked me if I had ever had him evaluated for developmental delays.

I am sincerely thankful to this dear friend of mine. If she had not said anything, I probably would still be here twiddling my thumbs, waiting for Jayce to talk. See, I've felt that his poor diet, screaming fits, inability to handle new stimuli, and anxiety are all related. Jayce has certainly not been an easy child to parent. So I've often questioned myself and whether or not I was doing the right thing. I knew that the way I've chosen to listen to my children and practice gentle discipline was the right thing for our family. But I didn't understand why it was so difficult to parent Jayce no matter what I did.

Since I knew my pediatrician would be no help, I took the plunge and called a state-wide service called BabyNet. Their goal is to catch children birth to age 3 with developmental delays and get them help... quickly. I called the day after the MOMS Club activity. So far, its been the best decision I've ever made about Jayce.

Within two weeks, they sent a caseworker out to evaluate Jayce and see if he even qualifies for services.

And qualify, he did. It was heartbreaking to answer every developmentally appropriate question with "No, he can't do that" :(

So... Jayce qualified for not only speech, but feeding therapy and behavioral therapy as well. He was then referred to Play Works, which is the company that coordinates his various therapies. We had his first consultation with an Early Intervention Specialist on this past Tuesday. His EIC (Early Intervention Coordinator)is so wonderful! She is a breath of fresh air. I can tell that she is going to fight hard for Jayce to get him all the services he needs.

She did, however, recommend that we go through the Autism Division and have him tested for an Autism Spectrum Disorder. He has a few "red flags" that need to be evaluated. If he meets Autistic criteria, then we'll have another huge window open up for services. If he doesn't, then we can breath a huge sigh of relief that Jayce is not autistic and move on from there with the help of a Developmental Pediatrician.
So far, I think we are leaning towards him being diagnosed with SID (Sensory Integration Dysfunction) and/or APD (Auditory Processing Delay). He has some characteristics of PDD (Pervasive Developmental Disorder) and Autism, but I'm not going there yet until we get a diagnosis from a Developmental pediatrician.


But I can't put enough emphasis on what Jayce can do. His motor skills are fine. He's affectionate, cuddly, makes good eye contact, has a great memory, and very empathetic to other's feelings. He's sharp as a whip when it comes to memorizing stuff. He can repeat song lyrics after hearing the song 3 times.... But he has no idea what he is saying/singing. Those words are meaningless to him. He's just reciting. You can't have a conversation with him, ask him questions, give him commands... nothing.

I checked out two books from the library. Out-of-Sync Child is a book about SID. Although I do think Jayce has some sensory issues, I recognize that they are mild and nothing we can't handle. And with some Occupational Therapy, he might not even have these issues later on.

The other book, "Could it be Autism?" just made me burst into tears. Especially the part where I read a personal excerpt from a mom who said, "My son had a vocabulary of 50+ words. But I realized he was just labeling things. You couldn't have a conversation with him. He was later diagnosed with Autism Spectrum Disorder at age 3 years."

I've cried about all of this and am over my initial denial that something is wrong. Now I'm ready to do stuff about this and hit therapy head on. My goal is for him to be in regular Kindergarten, not special needs 5K, by the time he's ready for school. I think if we start all these therapies now, he'll be okay.

Still, its all really scary. Lots of things that I've labeled as "just his personality" or "just a quirky phase" are really characteristics of a bigger problem. The fact that he'd rather stand at the VCR inserting and ejecting a tape over and over and over again, rather than play with toys is a real problem. And he still loves baby toys. He's obsessed over this Fisher Price Ball Blast and Playskool Ball Popper that were Jaina's when she was a year old. I put them in the attic when she was 15 months old because she was bored of them. Jayce has been in love with those two toys for 18 months now. He plays with them ritualistically.

I've been watching tapes of Jaina at 18 months, 2 years old, and 2.5 years old. The difference is absolutely amazing. Even when Jaina wasn't very verbal at Dad and Kim's house for his birthday party, she still understood a ton more than Jayce does. And she was talking in sentences, well, by 22 months old. Jayce has never talked in a sentence, nor does he understand basic concepts that a normal two year old should. He doesn't understand "If you do this, you get this" like cause and effect. Or time or order, like "Jayce, FIRST we are going to put your shoes on, THEN we will go outside".

We have a long road ahead of us, but I am confident that we are headed in the right direction. Any prayers or good vibes you are willing to throw our way will be very much appreciated :)

Of course, I'll keep everyone updated. But I don't want this blog turning into a therapy journal for Jayce. His developmental delays are just a small part of him and our daily activities. We still plan on being active with MOMS Club, going to the park, and enjoying each other. He's still my Jayce, no matter what label his diagnosis may bring :)

Update July, 2011

Wow, so much has changed in the past four years! Yes, we did end up receiving a "Classic Autism" diagnosis from both the developmental pediatrician and the developmental psychologist. A geneticist then concurred on the diagnosis. This happened the first week of April, 2008.

The diagnosis came just 3 weeks before his third birthday. As soon as he turned three, we put him on the PDD Waiver list. He was number 364 and they only allow 250 kids a year to get the waiver. The waiver would pay 100% for Applied Behavior Analysis. Because ABA therapy costs upwards of $50,000 a year, this is the ONLY way we could get him the therapy he needed.

We also applied for TEFRA. This is special needs medicaid to cover services that our insurance did not.

In the mean time, we put Jayce in OT, ST, and Feeding Therapy at SRMC Pediatric Rehabilitation Services. We stayed with them until he graduated in 2010. Yep, he graduated. He met all his goals and is now deemed "developmentally appropriate" in those areas. Now, he still has some stuff to work on, but that's what we have ABA for!

We also put him in the Developmentally Delayed preschool class for disabilities at our local school district. It was a self-contained class that also provided group ST and OT during school hours. It was 2.5 hours every day and Jayce made a lot of social progress during this time.

Jayce's PDD Waiver number came up in Feb. 2010. We have just completed roughly 18 months of ABA therapy with our team. ABA has been amazing for Jayce. Just what we needed. Jayce qualified for 27 hours of one-on-one therapy a week, but we typically utilize 10-15 now.

By the way, he also just completed his first year of REGULAR Kindergarten? Can you believe it? He's about to go into regular education 1st grade and we couldn't be more excited!

Jayce will have 18 more months of ABA left. Then? Not sure what he'll need. Hopefully nothing by then! Its already getting very hard for people to tell that Jayce has autism or is different in any way.

Our autism story truly is a success story. Its taken a lot of work, a lot of patience, and a whole team of therapists, but my little boy is a happy, verbal, social guy with tons of personality.


Update: January 2014

A lot has changed in just a few short years! Jayce was diagnosed with Tourette's Syndrome the summer before 2nd grade. Since Tourette's cannot be managed with therapy, only medicine, we decided to try it. Our deciding factor was Jayce telling the Pediatric Neurologist that his "body was uncomfortable all the time" and he just wanted it to stop.

We started out with just a low dose of Intuniv. It helped curb the tics very well and also had the benefit of treating some of Jayce's hyperactivity. But his 2nd grade teacher started complaining that he had a completely lack of focus in school. Since we've always known this about Jayce, it wasn't surprising that a teacher finally saw it as a problem. We added a stimulant to his medicines. After a few trial and error runs, we found that Vyvanse works the best for Jayce.

Unfortunately, Vyvanse makes his Tourette's Tics worse. Hmmm... what to do about that? Luckily, our neurologist and developmental pediatrician work well together. We just simply upped his Intuniv. Problem solved!

Then 1 year into medication, we noticed Jayce loosing weight. He went from 53 lbs to 48. He grew taller, though, which is always a concern for kids on ADHD meds. Although the stimulant Vyvanse does an awesome job controlling his ADHD symptoms, it also affects his appetite. Jayce has never been the best eater anyway and spent years in feeding therapy at the hospital. We took him off of Vyvanse and tried Stratera, a non-stimulant.

Stratera has the opposite appetite affect. He eats like a horse! When he can sit down, though.  Since its not a stimulant, it doesn't help his focus or attention as well as the Vyvanse. Whoops. Back to the drawing board.

After several more trial and errors (and believe me, Focalin was the worst error ever for us!), we decided on a combo of Intuniv, Stratera, and Vyvanse. So far, its working. Its not perfect and medication certainly isn't a cure all for everything that Jayce has to deal with on a daily basis, but it certainly helps!

Jayce is now finishing up the Spring semester of 3rd grade in an all-boys class. He loves his class, he loves his teacher, and he has friends :) His job is to put the flag up in the mornings and take it down. He plays baseball twice a year and is about to start the Spring Season; his first time at Player Pitch 10U.

He's obsessed with Minecraft on the computer and we are struggling to find a balance that makes both him and me happy :)

Overall, he's doing well. No major behaviors to report!