I have been thinking a lot about what I wanted to put in this post, so I guess I should just start at the beginning.
My Husband John and I had been trying to start a family since we had gotten married in 2003. After about a year and a half of trying, we started fertility treatments. On our third cycle, we got the best news you could ask for...I was pregnant. I had a few times during my pregnancy that things got a little tough, but got through them okay. Ryan Joshua was born in September 2005 and we were elated. Finally...our very own family.
Ryan was a very easy going, laid back baby. He was very happy pretty much all of the time and well, was just an exceptionally good baby. Looking back on it now, it seems like he may have been too good and that maybe that was the start of this journey for us.
When Ryan was about 6 months old, I started to notice some "quirky" little habits. He would do a backwards hand wave. Sometimes he would flap his hands like a bird. His hands were extremely sensitive. Having worked with autistic folks in the past, I made a mental note to myself that we needed to keep an eye on him, but tried to dismiss that anything could be wrong with our child. When Ryan was about 8 to 9 months old, he started to have some jerking and twitching episodes. Since there is a past history of seizures in my family, his Pediatrician referred Ryan to a Neurologist. After 2 normal
EEG's and a normal MRI, we thought we were in the clear and that the worst was over. Little did I know that our journey had just begun.
At 12 to 13 months, Ryan had no interest in self feeding. He refused to pick up a
sippy cup and refused to drink from one. He would not let you touch his hands at all and seemed bothered by everyday items (toys, food, etc...) touching his hands. He had very little speech. He seemed bothered by loud noises, especially crowded places. He had very little interest in other children.
Ryan was still a happy little guy, but it was obvious that something was going on. Again I thought autism, but tried to dismiss it.
We got a referral for Early Intervention. He was evaluated and qualified for services. Shortly after he began with them, we found out that I was pregnant again. John and I were very excited that Ryan would be having a brother or sister. After about 2 months of services,
EI felt that Ryan was in need of some additional assistance, so he was evaluated by Building Blocks Intensive Early Intervention. He also qualified for these services. When he was evaluated by BB, it was the first time I had heard the term
PDDNOS (Pervasive Developmental Disorder Not Otherwise Specified). The person who evaluated him was kind of "on the fence" about whether he had it or not. Ryan's Neurologist was of the same opinion. John and I needed some definitive answers as to what was going on with our son. For most of the time we were having him tested and evaluated I was pregnant with my daughter. It was another bumpy pregnancy and being "stressed out" about my poor son didn't help matters any.
In July 2007, I gave birth to a beautiful daughter, Natalie Grace. John and I were thrilled. Ryan, well that was a different story. He was quite upset about his sister and wanted
NOTHING to do with her. I mean, after all, he had been the "king of the castle" for almost 2 years. Now he had to share Mommy and Daddy with someone else.
Natalie was a different baby from Ryan right from the start. Where Ryan had been patient, she was impatient. Where Ryan had been quiet, she was quite loud. Where Ryan had been complacent, she was not. Where Ryan had been happy practically all of the time, Natalie was a bit harder to please. In other words, Natalie acted like a "typical" baby. At first Ryan was really pissed about Natalie being in
his house, but he has adjusted quite well and seems to love his sister very much now.
In August 2007, we had a comprehensive evaluation done on Ryan at Boston
Childrens' Hospital through the Developmental Medicine Department. It was 2 part evaluation, and then we returned a third time to discuss the findings with the Doctor. Again
PDDNOS was mentioned, but that whole conversation seems like just a blur to me. Natalie was only a month old at the time and wasn't sleeping very well, so I don't really remember a lot about that day. I guess when it really sunk in for us that Ryan definitely has
PDDNOS is when we received the report in the mail and saw it in black and white. It hit us like a ton of bricks, especially John. I had been kind of preparing myself for the fact that he had some form of autism. It was still hard to read that report though and see it in print. I'll be honest with you, reading that report was one of the hardest and most heartbreaking things I have ever done in my life. My heart, as well as my husband's, broke. Not for ourselves, but for our precious son. You may ask, what do you do after experiencing something like this ? You have a good cry and then you pick up the pieces. You pull yourself together and you press on for your child. You advocate for your child and you push for all of the services that you can get for them. You find a way to be happy, experience joy, and laugh again.
That's where we are at right now. Ryan currently receives a total of 23 service hours per week between
EI and BB. He is doing very well, but has a long road ahead of him. We are now gearing up to start the whole
pre-school process for him. Natalie is doing well and has turned into a happy little girl. She loves to laugh and play. She is quite vocal about what she wants and likes to be entertained all of the time. We are keeping a close eye on her, hoping and praying that autism does not afflict her also. I worry a great deal about it, as I am sure my husband does. We continue to be a strong family and hope the best for the future of both of our children.
I can't say enough about our families and friends. You all have been, and continue to be, a huge support system for us. We can not thank you or love you enough.
Sorry about the length of this post, just thought it might be useful for people reading to know the history behind this blog. I promise not to write a novel in the future.
