Thursday, March 26, 2009

Finally, A Diagnosis

I began to suspect something was not exactly on par with Nathan's development at about 2 and 1/2. Unfortunately, I listened to a family member who assured me that he would 'grow out of it.' We used all the excuses in the book. No, he doesn't talk, but that's because his sister talks for him. No, he's not delayed, his older sister was just really advanced. They told me that my husband was the same way when he was younger and he 'came around.' Looking back, I wish I would have followed my instincts, but hindsight is always 20/20 isn't it?

Hurricane Katrina came when Nathan was 2 and 1/2 and we ended up relocating to New Hampshire for awhile. That winter, Nathan had 5 ear infections. We all, including the doctor, chalked it up to the antibiotics not fully getting rid of it. They bumped him up to the strongest they could prescribe and it finally went away.

At his 3 year check up, I was determined not to 'wait and see' anymore when it came to my son. I asked the pediatrician about his development. I told her he wasn't talking and that I was concerned. He was also making strange fidgeting movements with his hands and wouldn't make much eye contact. He seemed to be more interested in the flashing lights and colors of the TV than in any person. He didn't drive toy cars, he lined them up and spinned the wheels. He lined everything up, in fact, and if you messed up the order, he would have a complete meltdown. This was about the time that it seemed like there was an explosion of autism diagnosis. It seemed everywhere you turned, the statistics were getting more and more grim. She told me about Early Intervention. She explained to me that someone would come to my home and place a poster board with pictures on it on our fridge and that Nathan would then be able to communicate with us by pointing to the pictures. I explained to her that he could already point to what he wanted, that wasn't the problem. We wanted him to SPEAK. Early Intervention just didn't work out.

We moved back to Louisiana and went back to our regular pediatrician. I brought my concerns to her at his 4 year check up. At that time, I had heard about the school board doing free speech screenings and they were in the process of evaluating him. I had also told them about my concerns about autism and they went ahead and gave him a full screening with OT, a nurse, a resource teacher, the speech therapist and the school psychologist. They were unable to give me a technical diagnosis, but they did recommend I bring their report to our doctor. Our pediatrician read over their report and agreed that we needed to look further into this. We were given a referral and put on a waiting list. We were told the waiting list was over a year. It just seemed like one roadblock after another at this point.

Luckily, this year Nathan got accepted into a private Head Start/Pre-K and they have given him all the resources he can get without the full diagnosis. He meets with OT once a week, Speech twice a week, Resource twice a week and he also receives Adaptive PE. They are the most amazing people. Nathan is a completely different child than he was when he started school. He speaks now, in full sentences, and he interacts with other children. He is so incredibly smart and now he is able to shine because now we can communicate with him.

We finally got an appointment for his evaluation on March 13th. It was an all day event but there was a sense of relief when it was over. I felt like we were making progress. The doctor called me on March 18th (only 5 days later!!!) and gave me her results over the phone.

I have known there was 'something' for over 2 years now, but hearing a doctor tell you that your child is autistic still feels like a kick in the stomach. I held it together for the hour I was on the phone with her, taking notes, asking questions, etc. But, when I hung up the phone, it was another story. I swore I wouldn't let the diagnosis devastate me, and it didn't, but I definitely shed some tears. It was a mixture of relief and 'what do I do now?' In one way, we had got the information we had been waiting so long for, but now we have to begin our new road. And, its a daunting one.

Nathan will turn 5 in the end of May. He will start Kindergarten next year. Now that we have this diagnosis, I can be sure the resources he receives will continue in the public school. We have seen such great improvements in him during this past year and look forward to the future and helping him in any way we can.

If you, or someone you know, has a child that has been recently diagnosed, I recommend going to Autism Speaks. I filled out their questionnaire and received my 100 Days Kit. It is full of great information. Every page I turn helps me understand what is going on more and more.

Tomorrow, I promise a more light-hearted, recipe filled post. Thanks for bearing with me!

~Nicole

2 comments:

Anonymous said...

Hi . .I love your blog and pop in every now and then. I am sorry to hear of the diagnosis for your son. I have a nephew that was also diagnosed with autism. There is a lady that has a blog. Her son is also autistic. She has had a lot of success with diet and oils, etc. It would be worth checking out. Her email is goodman-7@cox.net and her blog is The Enlightened Homemaker I hope some of this might help you.

pond2 said...

My first trip here..and I am enlightened. I think I've learned so much more about you Nicole just by being here. Sorry about all those Eggs!lol I realize what a dedicated mother and wife you are and I am truely grateful for knowing you. We're still going on that flea market extravaganze when you say the word. I will drop everthing!!