In the beginning…
My first red flag was when my daughter was born. Jay had just turned one and Julia joined our family around the same time. I had noticed “the signs” of delay in speech and other cognitive areas in Jay, but like many parents, thought that this was temporary and we should “give him some time” to catch up.
It was time to take my daughter into the doctors office for her newborn check up and I thought it would be a good idea to speak to the doctor about this situation. The pediatrician asked me to explain the behaviors exhibited at home and why there was cause for concern. He then had me answer a survey – one that determines whether or not a child needs to be evaluated for additional services – of which most of the questions I answered “no”. This was alarming to me. Even though I had never seen this questionnaire before, I had a gut feeling that Jaylen wasn’t going to grow out of this and start acting like his peers overnight. Answering “no” to all these questions meant that THERE IS A PROBLEM! The pediatrician explained to me that this wasn’t going to be easy fix and it will take “a lot of work” and “he may not recover”. Which came off as though he thought Jay had no chance of living a normal life or even a successful and fulfilling one. This broke my heart. And being that I was already suffering from postpartum depression (and didn’t know it at the time) this news was a huge hit on my already weak soul.
*To all the pediatricans reading this post, please don’t tell parents that this is an “uphill battle” when giving them the news that you think their child may have any kind of development delay. It is insensitive and rather harsh to assume that their child doesn’t stand a chance in this world. However, this applies to the insensitive world we live in and others who would never understand what its likes to raise, love and future a child with special needs.
Fast forward to lots of paper work, appointments and getting evaluated by therapist and organizations from New York State Department of Health. We now knew that he had something more…It was enough to put a label on it. He had clear signs of Autism or PSD. Doctors have told me that they cannot fully give a diagnosis until reaching 5 years because this is when the brain is fully developed and they can evaluate for a more concrete diagnosis. I guess it was good to know that I wasn’t crazy and that Jay had some sort of developmental delay, but this was in no way any good news for me and my husband to hear. All I knew was to get him all the services and push my feelings aside – I’d have to deal eventually deal with my own emotions down the road. For now my focus was on getting him help!
Now the question was…
Where do we go from here? How do I “fix” my son? Can he recover from this? How long will it take for him to gain all the skill he needs to be able to sit in his classrooms and interact with the others kids? Why did this happened to him? Did I do something to make him “sick”? How do I explain this is family and friends? Will others stare? What do I do if they do stare? How am I suppposed to digest this and move on? I felt helpless, worried, panic ridden, sad, confused and again, heart broken for my son. He didn’t deserve this!
Now the pain set in and the anger came out…not knowing how to approach this situation I just did what normal parents do with their children at this age, mommy and me classes and music and movement, while I filled out paper work and maneuvered through appointments to get Jay the help he needed and FAST!
I thought that since we caught his early, maybe he would be “fine” by the time he was ready for Kindergarten.
I can tell you now that no matter what your thoughts and feelings about your child’s diagnosis is, they can only learn and grow so much. Putting a time line or expectations is great, but don’t take it personal if these deadlines are not met to your expectations. You have to keep working with them and getting them all the help you think they need to succeed.
It’s been about 9 years since the day I stepped into that doctors office to have that heavy conversation. Since then, Jay has gotten early intervention therapy that included, speech, occupational and ABA therapies, as well as attended schools with ABA based learning. Jay is doing well today. He still has a diagnosis, but has made leaps and bounds in his behaviors and cognitive abilities. He has much more to go. This is my journey through the world of Autism. I hope that you can take away something from these posts. For the very least, please know that there are so many resources and help available for children on the spectrum.
My little piece of the puzzle…
Hug your children, give them unconditional love, never judge them for their lack, but for who they are. I have learned all this the hard way. I hope you find solace in the fact that I too have been in your shoes. There are many of us who hide from the obvious, but really need to stop being in denial and get our kids the help and attention they need to succeed and live an enriching and extraordinary life.
This is my goal. To do what I can to give my son more than he could ever imagine.
*I am not a therapist, just a mom who is sharing her journey as she continues to advocate for her child in order for him to exceed his own expectations and be free to be him, thus leading him to life full of possibilities NOT limitations.