It's funny, because for the first time in my life I don't know what to say. Usually writing comes so easily to me, but for the last week I've been practicing this over and over again in my head and I'm just going to take a shot. For some reason I feel like I need to tell my friends because my life has been changed - I've been changed. And I'm going to need all the support I can get. So here's the story...
JD just turned two on March 20th and on the Monday after his birthday I took him in for his well check. Now we just moved, so this was only the third time we've been to our new pediatrician. But just like every other well check, they asked me a bunch of questions. I knew JD's language was behind so I mentioned that. He can say about 10 words and he should be around 50. When the doctor came in he asked a few other questions. Can he point? Will he respond to a command? Like if you ask him to bring you something, will do it it? No - No - No. My stomach sank. JD was playing on the floor with a car that I brought with us. That was nothing new, he's done that since he was little. The doctor said to me, well I need to take him to a specialist because he's showing some signs of autism.
I guess what was strange was that I wasn't shocked. I've seen it for months - the way he plays with his cars, the horrible tantrums where he hits, bites and slaps me. The fact he can't communicate with me. It was all coming together, but I think at that point I still was holding out hope. He gave me some numbers to call of specialists in the area and we went home. It was like nothing big happened - in and out, no big deal. I was meeting mom and Jason for lunch and I just cried the whole way there.
The next day I started calling the specialists - hahaha - all of them were booked until late July, maybe August. I was sick, how was I supposed to wait three months until I found out? Luckily Jason had a friend in Ocala that's a pediatrician and he called her, she referred us to a doctor in Mount Dora. We called and got an appointment for a week later - April 5th. Ok, I can handle that. It took us the entire day to get something scheduled, but at least we made some progress.
I called my friend Amy that night because her son has autism and balled. I told her the things he did and his funny mannerisms. I knew she understood, and she was so helpful. I can truthfully say that without her in my life, I wouldn't be where I am today. She told me about ABA therapy and how I need to start looking into therapy as soon as possible - don't wait for the actual diagnosis - get him help now. I didn't even know that was an option, I thought I had to wait for a specialist to tell us to start treatment. Amy knew exactly what to do, who to contact, what he would need, what I would need - EVERYTHING. So I sat up all night doing research.
I'm not sure if that was a good thing or not, because eventually I wandered onto YouTube and watched videos of other toddlers with autism. Jason was working on his computer behind me and I just sat there in silence. In each video I watched I could see JD. There were kids stacking blocks over and over again, there were kids laying on the floor watching the wheels on their cars and trains, there were kids making the exact same vocal sounds as JD, almost like a repetitive babbling. I turned around and told Jason, this doesn't look good.
He made me get off - he knew it wasn't helping at this point. So I turned my attention to looking for therapy places. I found a website for QuestKids - it's a nonprofit organization in downtown Orlando that provides ABA therapy (behavioral therapy) for kids with autism and other developmental delays. I made an appointment and we were in two days later.
We met with a wonderful girl named Jen who took me, Jason and my mom and dad on a tour of the facility. They have individual therapy rooms for the kids and larger spaces to play. For the first time in days I felt a small amount of relief because I knew we were making progress. We sat down and she asked a bunch of questions about JD and that's when I think I "officially" realized that he has autism. Everything I told her, she said nodded her head yes. There were some tears when I realized that some of the things I thought he was doing for a reason weren't the reason I thought. For example, he always rubs his head against mine really hard, we call it a head butt. I thought that was his way of showing affection to me, almost like a kiss. But I found out that it's a sensory "hug" in a way. Something in his sensory world is off and by pushing against my head it gave him a relief of sorts. I still don't fully understand it, but hearing that was one of the hardest things she told me. We found out that there was a waiting list to get in (of course!) but luckily my dad's company does their insurance (how strange!) so my dad worked his magic and got us in! When I found out, that was one of the best days ever.
On Monday we went to the specialist and we sat with him for 2 hours. He played with JD, asked us a bunch of questions, watched him play with his toys and other stuff. Finally he got out a sheet and rated JD based on his time with him and what I had told him. I thought he was going to come back with a diagnosis of PDD (pervasive developmental disorder) which means that JD has some of the qualities of an autistic child, but not all. However, JD did have issues in all three qualifiers - behavioral, social and communicative. He said, he's on the spectrum, but he's high-functioning.
I can't imagine what I must have looked like - I think I almost just stared off in space because I knew it was real, but I felt like it wasn't really happening. He was such a wonderful doctor and was so nice about everything. We talked and came home and that evening Jason and I and the kids went out back and played on the swings and just spent good time together as if nothing ever happened. That was probably the best thing we could have done that night because it made me realize JD didn't change, he is the same little man that I love. We're just changing the way he's going to learn and love him.
Tomorrow we start at Quest. JD will be going Monday and Friday 10 -12 for the rest of April and then in May he'll go Monday/Tuesday/Thursday/Friday from 10 -12. We'll be adding speech therapy as well and hopefully get up to about 10 to 15 hours of therapy a week. It's called "Early Intervention" and doctors think that the more therapy they can get as early as possible, the more likelihood they will "recover" or lead a more normal life.
I'm so excited, an nervous and anxious because I don't know what the future will hold. My goal is just to be strong - forget about the "what ifs" and stop blaming myself that his happened.
Luckily I have my parents who have been a huge help. Therapy is NOT CHEAP and getting insurance to cover it is like trying to find gold at the end of a rainbow. Mom and dad are helping us pay until we can get the insurance to work with us, but if it wasn't for them then we'd have to wait months until we could start. I think that's what is holding me together at this point - I know we're doing what we can do for him as quickly as possible.
Things around the house are ok - it's a total mess because I'm having a hard time focusing on keeping it clean when all I want to do is research. Jason and I are going to a parent training class starting on Tuesday called "More Than Words" - it's an 8-week program where we'll learn how to communicate more effectively with JD and him begin asking for what he needs instead of using non-verbal ques. It also helps us to incorporate the same therapies at does at Quest with our everyday activities so he is getting non-stop reinforcement at home.
I'll keep everyone posted with how things are going. Probably through my blog and facebook. I just felt like I needed to like you all know. I'm proud of my little man and I know we're going to do everything we can to help him. But as long as he's happy, then I'm happy. I don't want to change him, just help him have an easier time everyday.
Thanks for listening and for the support. I appreciate all of you who read this.
~Lindsay
