My Journey Through the World of Special Needs and Intellectual Disabilities – The Fight To Save My Son by Alison Rhodes, The Safety Mom
This is the first and one of the most personal series of blogs that I will be writing. As many of you know, I took on the role as The Safety Mom (www.safetymom.com) because I felt that if I could keep one child safe I would have done something to honor my son Connor who died of SIDS. I’m willing to talk about any subject because I know that if I’m experiencing something, there are other moms and dads going through the same thing. And possibly, by sharing my stories it will help someone find comfort and answers. But, I’ve also learned that by writing and reaching out I have found comfort and answers for my anger, frustration and incredible sadness in the quest to help my second son.
My son Spencer is intellectually disabled. I knew, as his mother, that something was wrong very early on but no one, not even my own mother or his father, believed me. When I finally received acknowledgement from his nursery school that “there were some issues” and they referred me to a speech therapist I felt that I had solved the problem. Little did I ever dream that this was the beginning of a journey that would consume my life She recommended we move from the town we lived in as he would receive better services in a nearby town – one of the most affluent communities in the country and supposedly one of the best school systems. Again, I felt that my problem was solved.
In kindergarten I was told that it was too soon to tell if he had an issue. But by the end of that first year I became introduced to what I like to refer to as “alphabet soup” – IEP, PPT – words I have never heard but would quickly learn like a second language. Before my life as The Safety Mom I was a senior executive at one of the world’s largest public relations firms in Manhattan. I had sat at meetings with top CEO’s and celebrities and was a master presenter. But sitting in that first PPT at a small school in a little town was more unnerving than any high powered meeting I had ever attended. Here I was talking about what was wrong with my baby to people I believed were way more knowledgeable than me. I think I put on a pretty good show but I had no idea what I was talking about and it was a room of 7 “professionals.” Foolishly I believed they knew what to do to help my son and I never questioned a thing.
Six years later, over twenty specialists and more PPTs than I can remember, I sit here having just pulled my son out of school because this system has failed him. To be clear, this is a wonderful school that genuinely wanted to help him but my son’s issues were far too great for them. My frustration is in their denial to admit this years ago and their continued attempts to put a band-aid on an ever growing wound. I watched as they retained him in fourth grade, continued to offer him services that didn’t improve his condition and give him work that frustrated him. I screamed for help in creating programs that would help boost his self-esteem and socialization. While kids in school were friendly to him, they never reached out to him. He’s had only one friend since kindergarten and I thank God every day for this boy.
Finally, I watched in horror as the school began to physically restrain him. I knew this couldn’t go on and I finally found an advocate who could help me through this crazy situation. I also found a therapist who at last was looking out for Spencer. These two women have become my support team and I don’t think I would have made it without them. The culmination was Monday when he had a complete breakdown in front of his therapist and me begging us not to send him to school as he was terrified not only of school bullies but the teachers and aides.
So now I sit here, wondering how I had let down my beautiful little boy who was always the happiest, kind and eager-to-please child anyone had ever met. And with a new determination that I will not stop until I find the right school for him where he will learn, thrive and be happy. Of course this quest is draining my bank account and consuming my time (which is why I now do a great deal of work in the wee hours of the morning!) but I’m finally assembling a team who can help properly diagnose Spencer (ADD, NLD, speech/language and psychosis non-specified is the best guess so far) and bring back my happy little boy.
I’m in the process today of finding a short-term solution for the next several weeks while we find the right outplacement situation.
What is your story? How have you dealt with the frustrations of helping your special needs child? Comment back so that we can all find the resources and advice to help our babies.
Alison Rhodes is the founder of Safety Mom Enterprises and Safety Mom Solutions, the premier baby proofing and child safety company in the New York, New Jersey and Connecticut area. Alison is a family safety expert, TV personality and consultant.