This is my 100th Tumblr. Blog!!! and I want to make it special, so this blog is going to be about “THE DIAGNOSIS”!
Donovan was 22 months old when he was diagnosed. He was a very well behaved, self entertaining, cried very little, and babbled. He said Mama, and Dada. All seemed “Typical”. But as a mother, and having a baby literally one year and three days before I gave birth to him. I started to get a gut feeling and my mother’s intuition was telling something wasn’t quite right.
I started noticing that he wasnt babbling as much and he wouldn’t respond to his name very often. I thought maybe he had some hearing issues and would bang stuff and make loud noises to see if he would respond to sound. And yeah he did. I tried not to compare my first born to Donovan, because anytime I mentioned a comparison, I was told they are individuals. “They arent the same kid”. “She is a girl, girls are faster then boys.” “Boys are slow, don’t worry!” But, I found myself watching every little thing. I didn’t know much about Autism, but there was a story on the news that stayed with me for some reason. It was about an autistic little boy who was 7 years old. He hadn’t received therapy or school, because the parents had issues with Early Intervention. I would at Donovan and think, what if he were. But, it was easier and made me feel better to believe that he was a boy and boys were slow.
We took Dono to all of routine well visits and they asked all the developmental questions and they were never any red flags. I would occassionally bring up the fact that he was about 16 months and not speaking. But, they said he is still young, lets wait till his next visit. Well his next visit, Dono still wasnt talking. So his pediatrician thought it be a great idea if I called Early Intervention for an assessment. And so my Journey begins!!!!
I called Early Intervention first thing Monday morning. The process went pretty quickly. The Coordinator came to our home and met with me. She did the intake and I remember sitting fighting with myself. Should I, Shouldn’t ask about Autism. Then She asks me “have any questions?” I felt my lips moving, but I didnt hear what I was saying. I then heard her speak. ” Well they dont really check for autism until they are about 36 months, but if you feel strongly we can put in for an pyschological evaluation” I responded “Yes Please” She asked me why I wanted to have it done, and at that moment I had no answer other than I have a feeling. The evaluations began. We met with the Social Worker and she too agreed that a Psychological would be a good idea. Then the Special Instructions teacher, the Occupational Therapist, Speech, and the Physical Therapist. All agreed a psychological was warrented. He aced the pysical assesment. That he wouldnt need. We even went as far as getting his hearing assesed to rule that out as well. They did find some fluid build up, and he eventually had tubes inserted.
The day arrived and and the pyschologist was scheduled to come and see Dono. Now I was present for all of the assesments except the psychological. I couldnt get off of work, so my husband met with her. After the assesment, he called and told me that she said, That Donovan did well. He greeted her with a high five! (Shocking). She said she didnt want to diagnose him as of yet, but that she wanted to re-evaluate six months later. All reports were submitted we had our first IFSP, and sessions were to begin immediately. Therapist were calling to set up time slots immediately. All except a speech therapist. Apparently these are hard to come by. Things were going okay, routines were starting and being followed by my life was turned upside down. Working rushing home for the therapist. It was hectic. And that gnawing feeling wouldnt go away. I spoke with the coordinator and she suggested that I get an external assesment. So I spoke to our pediatrician and we got an appointment with a neurologist.
I started noticing that he would play but never with his sister. and if he did it wasnt for very long. The SI finally asked me if had been evaluated for Autism. we discussed the start of my journey and how we got to this point. She said she was going to speak with her supervisor and have her sit in and asess as well.
Donovan finally met with the neurologist and his preliminary diagnosis was that Donovan had PDD. Pervasive Developmental Disorder. Wow that was huge. and a blow to my stomach. I had read about this while doing my research. and although I had an idea, I still held hope that he was just a bit delayed in speech and he would be fine. I must have been in denial, because from that day. I could never say he had autism. “Is he Autistic?”, I would reply, “He has PDD” To me it felt more acceptable and less definite. They had explained it all to me and Yes I knew he was, but some how that word was not in my vocabulary.
The SI and the supervisor came to meet with me and evaluate Donovan, and we began to discuss ABA, and all these new therapies. AND There it hit me. Spectrum, Autism, Form of. My son was Autistic. HOLY Shit!!!! I crashed. I cried. I couldnt talk, my husband who knew less of autism than I did. Tried to console me, but they was no consoling me. What did I do. How did this happen, why him. what will happen to him when I am not hear. all of these thoughts along with a million more came flooding through my head. I started looking up stuff, and getting informed. Everything said that early diagnosis and therapy have proven progress.
It was like someone turned a switch or tightened a screw cause I was calm and I had a mission. All the therapist drilled in me. Fight for him, dont let them tell you no. You have a right. and I kept absorbing it all. He had no voice, so I had to speak for him. And trust me I did. I started fighting, I started speaking and I am still fighting and I am still speaking. I am his advocate, lawyer and Mother.
Donovan will start kindergarten this September, and although we have come to the end of a path in our Journey, we have a long road ahead of us. He has progressed a great deal. He is verbal, at last assesment, his verbal skills were about that of a 3 year old. He is non verbal very high. He is a wiz on a computer. I am not sure what the future holds or how he will turn out, but I do know that I will do whatever it takes.
My advice to parents or guardians who are or may have to begin this journey, stay informed, speak up and dont take no for an answer. Therapy is key!!!!