February already!

So, I thought I would just hop on my computer each week and share my journey with you. However, life happens as most of you probably know and things get pushed off to the next day and next day and…well you get the idea. So, now it is February already and I haven’t said anything. So, I will do myself a favor and start with a more realistic goal of once a month and that way you will only be pleasantly surprised if something new pops up sooner.

My journey my have a little bit of a different start from others and that is okay. Take the information that is helpful and skip the rest. My son was born in the 27th week of my pregnancy which brings a whole different set of issues. So, I will focus on our autism journey for the purpose of this little blog. After 12 weeks and 1 day (yes, I was counting) we finally brought home our tiny little boy. For anyone who has had a premature delivery this part will sound familiar. When he didn’t meet milestones, they always reminded me that he was premature and to be patient. Which was understandable in the beginning. However, after the first year of life, it got harder to be patient. He was evaluated for possible developmental delays, but after factoring in his prematurity, he did not qualify for any services. Which at the time I accepted because I did not want to have unrealistic expectations for my little guy given everything he had been through medically in his first year of life. In a nut shell, he was seen and treated by ophthalmology, nephrology, pulmonology and his regular pediatrician on a regular basis which kept us pretty busy that first year.

It wasn’t until his two year evaluation that I felt maybe he was not getting the support he needed because after this evaluation, which was in a new state, he still did not qualify for services. Even though he was essentially non-verbal, they considered his use of sign language a form of communication and counted the signing towards his word count. We mentioned his repetitive behavior and how he would just run in circles at times that seemed almost endless but they did not seem concerned by the behavior. Since he was our first child, we had nothing to compare to and thought maybe we were over analyzing. Unfortunately, it wasn’t long after this that life got just a little busier with the addition of his sister (a little early also and with my own surgical complications) time flew by and before we knew it…time to move again.

It is difficult to start over each time you move when you have developmental concerns for your child. You start over with a new pediatrician who has not had the opportunity to see your child previously for any comparison between well visits or vaccination appointments. Not to mention restarting the process of figuring out who to call to register in your county to request an evaluation for services. So, it was not until he was 3 years old that we finally had more undeniable development delays (even though they were actually subtle at first glance) and received a referral for further evaluation. We described his sensitivity to sounds, repetitive behaviors and still mostly non-verbal communication to his pediatrician and she listened. Thankfully, she understood this to be a problem. These characteristics made it so difficult for the daycare to integrate him within his age group that they said they could no longer have him in the group and asked us to take him out of the daycare. There were times he would get so frustrated with his inability to communicate his needs to the staff or his peers that he would just throw his head straight back and that understandably concerned them for safety reasons but as two working parents it left us with a feeling us helplessness and we had no idea where to go from here. We were fortunate to have my mother living with us at the time to watch him while we were at work until we could sort everything out for him. We were so grateful to have gotten the referral from his pediatrician for him to be evaluated again by a developmental specialist. He was given a diagnosis of pervasive developmental delay-not otherwise specified (PDD-NOS) by the pediatrician which allowed him to qualify for speech therapy and soon after occupational therapy as well. We did not really know what the diagnosis meant for his future but at least we felt like we were headed in the right direction. He was starting to get some help. It will still be several months before he was evaluated by a developmental specialist.

My kiddos will be off the bus very soon. So, I will stop here and type again soon. Best Wishes until next time.