Has it Really Been a Year Already?: A Not-So-Quick-Recap on the Last Year

So, S’s early intervention team scheduled his annual review for this past week. It’s crazy to think that a whole year has past since we started this journey. Even though we did not receive a diagnosis until March of 2012, it was at this time last year that S was at his worst and regressing rapidly. I’ve never really told the story of S’s diagnosis, because honestly, it is a rather long one, but I figure now is as good as time as any. I won’t go into detail with all of the super early stuff, but I will recount the ‘ah ha’ moments where we just *knew* that something was off in S’s infancy.

Looking back at S’s infancy, there were certainly signs. However, many of them were dismissed as first-time-mom paranoia, and I went on enjoy my little boy as if nothing were amiss. I figured that all kids develop at their own pace and that he would smile and laugh when he was ready. As I’ve mentioned before, S’s former pediatrician dismissed my concerns of S’s lack of laughter. I thought it was great how ‘serious’ he was and what a ‘good baby’ he was when I took him places. Physically, S was right on track with the walking and the crawling and all of the other mile stones you anticipate with your children. The day before his first birthday he said “momma”. We heard it only once or twice more and then the regression began. Other words came and went and, at S’s next appointment, I expressed my concerns with his NEW pediatrician. She said that if S didn’t develop and hold 10 words by 16 months, for us to call her. Then, at the time S was 15 months, my husband and I both had to go out of town on business for 4 days.

S was left in the care of my sister and mother-in-law and he also maintained his routine at daycare as usual. It was a trip we no longer wanted to take as I think we could sense things were not going well with S. Unfortunately, we were contractually bound to go and we kept thinking that we were just being crazed first time parents and that S would be just fine. After all, it is only 4 days and he will be with very safe and loving family.

Boy were we wrong.

Almost immediately after our return S regressed. His thumb sucking increased to a point that he was breaking out in sores and he couldn’t play with toys because he wouldn’t take his hand out of his mouth. At daycare, he would hide in the back room, away from the other children, and suck his thumb while staring at the wall. He didn’t want to be around anyone. At home, he would stare off into space and you could, quite literrally, snap or clap your hands in front of his face and he would just stare right past you… sucking his thumb, like you weren’t even there.

We were watching our happy, bubbly little boy just disappear before our eyes. It was like every day a little more of him was slipping away and we had no idea where he was going. I was fearful that soon, he would just be a shell of a boy- a body- with him so deep down in there we would never reach him.

Heartbreaking is an understatement.

The feeling I had of being out of control while my son disappeared further and further into himself is indescribable. It was so weird to be able to physically touch him and to still feel that he was slipping away. No matter how tight I held, I couldn’t hold on to him. I would not wish this on my worst enemy.

So, we called S’s pediatrician and she referred us to our county’s Infants and Toddlers Program. They did an initial evaluation for his speech delay and determined that he just barely qualified for the program. He just squeaked in at just over the minimum 25% delay required for acceptance. For this, I will be eternally grateful. Not soon after his acceptance, he was disappearing at a faster and more alarming rate. It was then that I asked for additional support and instead of a Speech and Language Pathologist, S was assigned a special education teacher. His teacher, E, has been the most amazing support through our journey.

Calling the early intervention services in our county was THE BEST THING we have ever done for our boy. The results we have seen in the last year have been outstanding.

In fact, S entered the program in December of 2011. The following month, in January, he was seen by a child psychologist  and we were told that S did NOT have signs of autism at that time.  By March, I actually was considering pulling him from the program. I thought that he was making so much progress, that we were utilizing services that our son no longer needed. A 45 minute follow up review with the child psychologist and the rest of S’s intervention team was called for March 29th. I honestly thought that they were going to tell me how great things were going and that S no longer required services.

As the meeting quickly passed the 45 minute mark and then crossed to well over 2 hours, I started to realize that things were not going well. All of the adorable little quirks our son had were not just adorable, they were signs of autism. I won’t lie. I left that meeting depressed. I felt that the rug had been pulled out from under us. They saw things we didn’t didn’t see- lack of joint attention, no parallel play, not responding to his name, attaching to odd objects, sensory issues, the list goes on.

I was so depressed that the very next day, I took retail therapy to the max and I bought a fucking car. I’m not kidding.

At the time of the meeting, I asked flat out if our son had autism. My simple yes/no question was met with a long and wordy answer that did not contain a yes or a no. For this reason, my husband and I were under the impression that a formal diagnosis had not yet been made. It was not until May, when I was in a parent group meeting that our psychologist attended that I learned that S had indeed been formally diagnosed with autism. I was in a public hallway when I received the news and it was everything I had to hold it together.

In reality it was just confirmation of what we had really known all along. Even during the few weeks that I considered pulling S from the program, I knew things weren’t right.

Denial is a crazy thing.

What I can say is if you are suspecting that your child is developing differently than he or she should be- is don’t wait. Don’t burry your head in the sand. AUTISM IS NOT A “WAIT AND SEE” DISORDER. Autism needs early intervention, and because of early intervention our son has made progress and closed gaps that astound his intervention team.

I’ve heard so many parents in the parent groups express guilt that they waited so long to seek help. They felt that their kid would ‘catch up’ in his own time. They didn’t want to make a mountain out of a mole hill and call in for services that their child didn’t need. And most of all, they didn’t want anything to be ‘wrong’ with their baby. And really, who does?

But I’ll say this, Daddy J and I had a lot of same reservations. However, on the advice of our pediatrician, we took the ‘better safe than sorry’ approach and our boy has flourished as a result. If you have any suspicions at all- just call and get an evaluation. It is free and you will find a world of support you never could’ve dreamed of.

And here we are, a year later. Looking back, this has been one of the hardest, and yet most rewarding years of my life. When you have a special needs toddler, your world is shaken in a way you can’t imagine. The hopes, dreams and expectations you have for your child need to be rewritten. Your daily life and ‘to do’ list is undeniably different than those parents of typical children. But, it is also very rewarding. Seeing the progress in S this past year just fills my heart to the brim. I cherish every day, even the rough ones, as I am just so grateful to have him here, healthy and smiling. Every new milestone is a true celebration, as I am all too aware what might not have been.

You take nothing for granted.  Autism has given our family the ability to appreciate every moment and every interaction with our son, no matter how small. In many ways, this is a gift.

So, looking back on this past year is quite amazing really. Not only has S made progress in his communication, but we have made progress in accepting this diagnosis, and we are now able to enjoy a life with our son we had started to think might never be possible. I know that future years will hold their challenges, but more than anything, I know they hold growth for our family.

Getting a Formal Autism Diagnosis: Should We Have Waited?

We began the process of determining S’s delays around 16 months of age. By 18 months, S qualified and was entered into the Infants and Toddlers Early Intervention Program in our county. At 21 months, he was given a formal diagnosis of Autism.

At the time, having the actual label seemed to benefit us, S’s parents, a great deal. It didn’t change anything for S, as the county addresses his delays no matter why he is delayed. His schooling and therapy sessions stayed the same, regardless of that label.  However, we thought having the formal diagnosis might open more doors for treatment for S in terms of insurance and that it would enable him to receive more help outside of what the county provides for him.

For us, as parents, that label was also instrumental in coming to terms with the fact that S has autism. I know that for me, it allowed me to formally acknowledge that this will be a life long affliction and that it was okay to grieve. You see, before the diagnosis, there was always the hope of ‘what if?’. I mean, the writing had been on the wall for a while and the diagnosis did not come out of left field. We knew something was off and autism seemed to fit the bill. However, since he didn’t have the diagnosis, the label of autism, there was always, maybe he is just speech delayed or what if he just prefers to play alone. Maybe… just maybe… he will grow out of it. And, since there was that glimmer of hope, it seemed silly to grieve over the process. After all, if he is not autistic, there is no sense in making a big fuss over nothing.

And while having a glimmer of hope is nice, it also keeps you from accepting the reality of the situation and processing what it means for your child and your family. When the formal diagnosis came, it squashed any glimmer of hope in just a few short words… “S has autism, and that will NOT change”. As heartbreaking as this was to hear, in some ways, it was relieving. Hearing those words simply confirmed what we already knew in our hearts; except now, now we were able to truly process the reality.

The diagnosis allowed us to grieve. We could cry. We could throw tantrums. We could be sad, angry, scared, hopeless and bitter. I felt that we were finally given permission to feel all of the feelings that we had been feeling for the past few months. With the diagnosis or “permission”, we were able to comes to terms with S’s condition.

We were able to accept autism.

Well, all of that was great. It was great until I quit my job (you know, the one that carried our medical benefits) and tried to apply for private insurance. Apparently, even if you are currently covered under group insurance, you can be denied for private insurance. My two year old (and my husband) are being denied health coverage for preexisting conditions. Oh, and let’s not mention that my coverage is quoted at over $850 a month. So, for now, we are on Cobra- which costs about as much as a mortgage payment. With Cobra, we have 18 months to find coverage or we will be without healthcare benefits. Someone please, tell me again how this system does not need reform?

So, now I am left to wonder… had we not pursued the diagnosis, would we be able to get insurance for S? There are programs out there that we think would benefit S, but I am scared to file any autism related claims on Cobra, for fear that those claims will be further used against us in the future. As beneficial for us, as parents, that label was, I really think it is hurting our son, and our finances, in the long run.

I know one thing for sure, insurance is a scam.