I haven’t blogged in quite a while… I clearly just use this as an outlet for things I can’t quite talk about publicly, or when i just need to be heard. This may be the hardest thing I’ve ever written, but I can’t keep it to myself any longer.
My son is 3.5 years old now, 42(ish) inches tall and a whopping 60 lbs. He is in the 99th percentile for height and off the chart for weight… built just like his 6’5″ daddy. Unfortunately, he has some developmental concerns that are just as incredible as his size. This has been a long time coming.
At his 1 year checkup, as the pediatrician went down the checklist of typical milestones I answered everything with an enthusiastic yes and a smile- until she began to ask about his vocabulary. At this time he was only saying ma ma and da da. I expressed my concerns and made it known that I felt he was behind with speech. His pediatrician chalked this up to him being a boy. She reassured me by saying “Girls his age may talk more, but I bet he can throw a ball better.” She was right, so I laughed and agreed, and tried not to stress.
Fast forward to his 2 year checkup. Still, the same concerns regarding his speech. By this time he was saying ma ma, da da, ball and turtle. Nowhere near where he should be. At all. I expressed my growing concern and was once again reassured that he was just a typical boy and would start talking in his own time. I left this appointment feeling less than satisfied. It was at this time I began putting other pieces of his personality together with his speech delay and started to suspect there may be a much bigger underlying issue. The more I researched the more I became convinced that my son had autism.
I made another appointment with his pediatrician when he was 2.5 years old and demanded a speech evaluation. I again asked his pediatrician if she agreed that he may be autistic. She disagreed, based on the fact that he is extremely affectionate and makes decent eye contact. I didn’t push the issue further, thinking “she is a doctor, I’m a hypochondriac. Let it go.” We went to the speech evaluation a few weeks later and to no one’s surprise, he was found to have a profound speech delay and started hospital based speech therapy right away. We also got involved with the first steps program and added weekly home visits with a developmental interventionist, school based speech therapy and occupational therapy. He has made some progress, but nothing extraordinary.
3 year checkup time. We still don’t have very many more words than we did at the 2 year checkup, or 2.5 year special appointment. His pediatrician finally agrees that there are some red flags and refers us to Cincinnati Children’s Hospital to see a developmental pediatrician. After a few hours of discussion regarding my pregnancy, his delivery and infantile development, up to where he is today, the developmental pediatrician stated that she does have concerns for Autism Spectrum Disorder. We are scheduled for the ADOS in late August and anticipate a diagnosis of ASD.
I know, and have known in my heart that my son has autism since he was 2. It’s honestly a relief to finally be getting answers and explanations for his shortfalls, eccentricities and resistance to change. But as relieved as I am, I am just as heartbroken. I’m grieving for the possibilities that my child may not have in his future. I’m grieving for the friends my child may not be able to make. I am grieving for the isolation and bullying my child may be subjected to. Im grieving the words that he so desperately wants to say but just can’t. I’m grieving this diagnosis. Every second of every day I am grieving the things autism may take from my perfect, innocent son. And then, i feel guilty for grieving these things. I love him the same regardless and will be here for him every step of the way. But I cannot accept this without asking why him? Why my baby? We have no family history, no pregnancy complications, no clear “why”. It just happened.
I have told 3 friends, and of course my husband knows. I also joined an autism mom support group. Aside from these people, I haven’t spoken about this to anyone. I can’t. I don’t have the words, nor the explanation that I know will be expected when I tell people about our Autism journey. So for the sake of my sanity, I’m letting you in.
The Complete Idiot's Guide to Being a Mom 