(PDD NOS) Autism & Brady

It has been almost a year since I started to notice certain signs of Autism like behavior with my son, such as, having a fixation with anything sticky, balls, not responding to his name, ignoring the world around him, and not speaking. Like most mothers, I wanted to ignore what I saw. I was not ready to come to grips with the idea of him having anything wrong with him. I kept telling myself that this was temporary and he would grow out of it. However, I knew the day would come when I could no longer close my eyes to what was in front me.

At my son’s last physical, his doctor handed me a questionnaire to fill out on developmental milestones. As I sat in the chair filling out the questionnaire, I started to realize that my son might have certain delays, especially in communication and social skills. When I finished with the questionnaire, the doctor took it to add up the points. I remember the look of concern on his face. The doctor explained to me that the questionnaire indicates that my son may have delays. He also gave me the number to our local Early Intervention so that I could have him tested for delays.

I knew at that point that I could no longer neglect getting my son help for his speech delay. I called Early Intervention and gave them all the information they asked for. I set up an appointment with them to have him tested. Within one month, he was tested and started speech therapy. Shortly after her sessions with my son, the speech therapist approached me with her concerns that Brady showed some signs of having Atypical Autism also known as Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS). She suggested that I have further testing done on him. My middle sister and another family member had already approached me before about the same concerns that his speech therapist had. However, that moment in time, I was going through the stages of denial and I was not ready to face the truth. I knew that Brady had speech delays but I wanted to overlook everything else.

Yes, I saw the flags but I wanted to overlook what I felt deep inside of me. I was not ready to come to grips with the reality of my son having a problem especially if it had the word Autism tied to it. Looking back on it, I now know it was selfish of me to have those feelings. What I did not understand is that by disregarding what is in front of me only hurt my son. In truth, it was not about me but about my son. I knew that I could no longer close my eyes to it and had to do whatever I could to ensure that my son would pull through.

The day had finally arrived. It was the day of a cousin’s baptism and the family was having a barbeque in her honor. I opened my eyes and I started to notice how different Brady was from other children his age. Brady did not want to play with the other children. Brady wanted to hide away from everyone. Brady did not seek attention from me like the other children his age. Brady was very quiet and not talkative. There was also no eye contact with Brady. These were the facts that were right in front, and these were the facts that I would come to grips with that summer day in August. I will never forget that day as long as I live.

I spent the next few months sorting out my feelings after the baptism. I had new emotions that I was dealing with. Not only did I have a child with a medical condition but it also appears that second child may have some form of Autism. I had a lot of guilt to work through. It was my fault because Chloe had Heterotaxy, Polysplenia. It was my fault because Brady may have Autism. I must have done something wrong! It must have been the fertility drugs that I took that caused my children to have disabilities. I finally was able to put aside the why me’s and I prepared Brady’s paper work to be sent to Children’s Hospital in Boston. During this time, I also started to notice that Chloe was having a hard time at school so I also sent in paper work for her to be tested. I remembered holding the finalized paperwork in my hands. I held onto it for a very long time before mailing it. I knew once I mailed out the paper work there was no turning back. I would soon have my answers to what is going on with both my children.

Surprisingly, Chloe was the first one to be tested. I was told that it would be 12-month waiting period for Chloe. It only took 4 weeks to get Chloe an appointment. I think it helped that Chloe is seen by genetics at Childrens on the same floor as Developemental Medicine. After Chloe was tested, my husband and I were notified that Chloe has ADHD and Learning Disabilities Not Otherwise Specified. Since then, Chloe is now receiving extra services in school and has an IEP.

Brady would be tested next within 6 weeks from mailing out the packet. I remember how nervous I was driving him. Brady on the other hand was happy to be going for a long car ride. However, once we arrived at Children’s, his mood changed. He was no longer cheerful but cranky. We waited patiently to be called and Brady kept himself occupied. However, when it came time to enter the room Brady protested and cried. He did calm down and was able to find comfort in a ball that he found. Brady held onto the round ball tightly and would not let go. The round ball soothed his nerves. He even tried hiding the ball in his shirt so that no one would take it on him. Nevertheless, the therapist took away the ball from him and he lost the only thing that was consoling him. He then tried to hide under the table. Yes, Brady did have a hard time during his session and even cried when the doctor looked in his ears. He even tried jumping off stairs. At that moment, the doctor advised me to be careful with him because Brady has no fear. The testing felt as if it lasted forever and I was relieved when it was over. I did have an awful feeing when I left. My gut was telling me that Brady had a form of Autism. I tried my best to not to think about what had just transpired. I tried not to think about it again until our next appointment.

Five days passed and I went back to Childrens Hospital and met with the doctor. He delivered the news that I was dreading for so long. He said that Brady has Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS). Also known as Atypical Autism. The doctor explained that a child may exhibit some signs of Autism but may not have all symptoms associated with classic autism (this is also a less severe condition than Classic Autism). I can honestly say that I did not take the news very well and was in shock. However, I was able to pull myself together and started working on getting services for my son. Today, Brady has ABA services 4 times a week 2 ½-hour sessions. He is also going to Pre-school for children with learning disabilities where he receives speech and OT. I know it is a long road ahead but I am confident that with intense services before the age of 5, that Brady will be able to have a normal life.

In the meantime, my younger sister had her 6-year-old son tested and he has Pervasive Developmental Disorder (PDD) also known as classic autism. In addition, my other nephew as ADHD and one of my nieces has ADHD and Auditory Processing Disorder (APD). It seems has if there is a strong genetic component on my side of the family. The doctor explained to me that certain Gene Variations maybe linked to ADHD, Bipolar, and Learning Disabilities. We also found out that Brady has a micro duplication. It also turns out that I also have the same micro duplication that Brady does. I told the genetic doctor that as a child I was very hyperactive and did struggle through school.

I often tell people that a syndrome or disability does not define my children. My children are caring beautiful sweet enduring children for whom I love – those qualities are what define them. I truly believe that my calling is to be Chloe and Brady’s mom. I am their number one fan, advocate, and I have dedicate my life to them - to find answers, to document our experiences in this blog and to do what ever it takes to make life easier for them. Yes, at times it maybe hard to find a happy medium but nothing is impossible. I truly believe that we can do anything if you put your mind to it.

Today, Brady has come a long way. He is a different child from last year. With speech services, Brady is able to communicate to us. It was right after his third birthday; he called out to me “Mommy”. It was such a hug milestone and it meant so much. With ABA services, my son asks for tickles and chocolate milk and he is starting to express to us what he wants. He also has some eye contact and responds sometimes to his name when I call him. I strongly believe it was because of the services he received from Early Intervention and ABA Therapy through Children Making Strides that he has come a long way. However, it is not enough. We need more services for children with Autism. We as parents need to be our child’s advocate. Please help me in spread the word for the Autism Insurance Reform Bill in Massachusetts (House No. 3809). For more information, please visit the website noted below.

http://www.autismvotes.org/site/c.frKNI3PCImE/b.4432481/k.90A7/Massachusetts.htm
http://www.autismvotes.org/atf/cf/%7B2A179B73-96E2-44C3-8816-1B1C0BE5334B%7D/Arguments_for_private_insurance_%20coverage.pdf