There are so many thoughts and feelings that flooded my head on the 11th of November last year: relief, guilt, confusion, heartbreak, disbelief, regret, anger…I am quite sure that the list can go on and on.
At age 11, Jacob just wasn’t fitting in with other boys or girls his age, he wasn’t as mature and he still threw temper tantrums and couldn’t be left unsupervised. As a mother I wasn’t quite sure if this was the ADHD that he had been diagnosed with in first grade, or if he was just out of control. Never did I really think that he was autistic, the thought never crossed my mind. Over the years I had done tons of research on ADHD, its treatments, medications, therapy, IEP’s; I’m sure you get the point. I am a very analytical person and I research EVERYTHING that applies to my life or those I love, however this slipped past me. I don’t even know how it could have, it was a HUGE elephant in the room and I just didn’t see it.
Jacob was being seen by his pediatrician and a specialist that handled only his ADHD and medications. We had been through just about all of the meds and the only thing that half-way worked for Jake was Ritalin. But as I said, it only worked half-way, he was still very distractible, extremely impulsive and the temper tantrums (now I know they were meltdowns) were out of control. My fiancé, John was one of the first to point out to me that there was more going on than just ADHD. He has become the father that Jacob has NEVER had and loves him as his own, for him to say this was very hard. So we made an appointment with his ADHD specialist and asked him if there could be something more going on than just the ADHD; that one question changed our lives forever. He spoke to Jacob briefly and turned to us and stated he was referring us to the ASD clinic for testing.
November 11th became the day our lives changed forever, I know that seems a bit melodramatic, however it is very true. After 8 hours of testing and talking to both Jacob as well as us, we were told that Jacob has PDD-NOS. To me it was random letters that really didn’t mean too much to me, so I asked them to please clarify “what does that mean to my son?” That was the first time I was told that my son was on the autism spectrum, not Asperger’s, as I had thought, but lower functioning in his daily functions. The extremely hard news we were told was that his average maturity was that of a 5 year old and some of his comprehension was that of a 2-3 year old. My heart broke and the what-if’s started flooding my mind, I was overwhelmed instantly and wasn’t sure how to surface underneath the flood of emotions and thoughts. I couldn’t seem to even breath much less think of what this was really going to mean for us. I knew really nothing about autism and what it entailed and what it meant for my son. I just didn’t know what to do, where to go, who to talk to, there was no one in my life that I could turn to for answers. Heartbreak doesn’t quite grasp the feeling I felt in my heart, I was plagued by guilt, that somehow it was my fault because of the stress I was under during my pregnancy, that I never caught this earlier and had him diagnosed… However, the questions that were also somewhat answered gave me some type of relief, I now knew why Jacob behaved the way he did and it has explained a lot.
Now 6 months later, I still struggle with all the same feelings, but we are taking the steps to help Jacob and our family. I am quite fortunate to have excellent benefits that cover his treatment, unlike so many other families in this country. Jacob sees a therapist ever 2 weeks who is absolutely wonderful and since it is therapy not just for him but us as a family it has started to help so much. I have been, of course, doing quite a bit of research on autism; however as we all know no one on the spectrum is alike. I have learned a lot through another blog Diary of a Mom , which has let me know I am not alone. Although, I have miraculously found a method to help Jacob calm down from his meltdowns that works and have started to pinpoint the triggers.
Fortunately, Jacob is not withdrawn and he is very compassionate and loving. In the words of my daughter Ashley (age 18), “it isn’t Jacob that needs to change Mom, it is US, we all need to change how we treat him. Not to mention in all of this, HE is going to teach us so much.” Everyone keeps telling me in my weak moments that he is still our Jacob and nothing has changed that, we still love him and he loves us unconditionally. So this begins our journey.