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.

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3 Comments

Filed under Health & Wellness, Learning Disabilities, NLD, Parenting

3 responses to “My Journey Through the World of Special Needs and Intellectual Disabilities – The Fight To Save My Son by Alison Rhodes, The Safety Mom

  1. Alison,

    As an educator and a parent who too had to negotiate the special education process, I really appreciate this article. Thank you for sharing.

  2. Janet Arsenault

    Although my child doesn’t fall under “special needs” at school, he is ADHD and I’ve struggled every year with him in school. Some teachers are more receptive to my continuous contacts with help as to what assignments are due, what homework hasn’t been passed in, etc. He just forgets.

    For his first 6 years of school (elementary school), I volunteered in the classroom. He knew the rules were that mommy was a helper and he couldn’t come running to me if he misbehaved and was corrected by the teacher, but it gave me the knowledge of what he was doing, what tests or reports were coming up, and the overall issues of the classroom.

    I don’t think there’s anything better than first hand feedback to the schools if there are issues. Many times through the years of volunteering in the schools I’ve gone to the principal with scenarios I’ve witnessed that needed help with. Maybe we’ve got a good principal, but I would hope that most schools would address the needs of the children.

    In our school system, only a handful of students aren’t mainstreamed. They may go to some classes for smaller sizes or extra help in a subject, but are put with the rest of their class for PE, Art, Music, and any other subjects that they are able to work at grade level in. That may or may not mean an aide with that student to help them focus, but whatever it takes, it’s done.

    There is no “special needs” section in life, and we all need to do whatever it takes to help all of our children achieve their dreams and goals in life.

    I’ve met Spencer and he’s a sweet boy. I hope you find what you need in an educational environment for him to thrive.

  3. susan

    You are right “this is a wonderful school that genuinely wanted to help him but my son’s issues were far too great for them. ”
    I was there. I am still confused after many years of being a para why it is that parents believe the public school system is equipped to handle very special needs. They do their level best to provide services in an environment that is structured for mainstream learning, then ask that somehow magically we make a child who is struggling learn, have friends, be accepted and then on top of it are outraged when the child acts out because he feels the lack of flow in his life. We try so hard to keep the children happy, whole and moving forward. It breaks our hearts as paras when we are given directives to do things with children that we know are not going to work . If my son had a learning disability the last thing I would want is for him to be placed in a big, noisy group where focus is hard for even the typical learners. But that is the request du jour…. put our challenged child in a room with kids who haven’t developed the empathy or tact needed to reach out to a friend in need. Sit with him but be invisible, help him to blend but when he has an outburst and runs away or strikes you and is in danger himself don’t handle him. Its a rock and a hard place.
    A word about the staff there. They are top notch, educated, gifted, caring, deeply committed to helping children with struggles to feel good inside and to learn . If they had chosen to hang out their shingles and charge $500 an hour many parents would be storming their doors, but since they decided to be public educators somehow they have been relegated to the status that is completely backward. That is truly truly deplorable. I don’t know how they show up for work everyday dealing with the amateur experts, opinions and ideas of people with no training or experience in teaching , especially special education. They attend long PPT’s and are then criticized for not being in the classroom. Each parent wants hours of meeting time. I would trust anyone of them Special Ed teacher, Speech pathologist, OT or PT with my child and be grateful I had them in my life. People tend to want administration to be in control and sadly it is their job to assuage parents and create a peaceful atmoshpere. Often what needs to be said and done is censored in order to be PC and hopefully avoid liitigation which only hurts the children more.
    It is a system that is not working for everyone, but I have seen successes. There are parents who are aware that their non-verbal child learned to communicate, their immobile child is now mobile, they just don’t write about it.

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