A Special Needs Parents Journey

Every parent has their own journey to take when it comes to their special needs child. I’m certainly no different in that I only want the very best for my child, but the road is a long one and can be difficult to navigate. Noah is my 13 year old son, the 1st boy in the family for a long time. When he was little, around 2, I noticed he was so active all the time. I had no other friends with boys his age so I just figured it was natural for him to be so active. You know, the old “boys will be boys” saying.

I stayed at home with him until the age of 3, when I enrolled him in a local pre-school. I let them know that he was very active when I enrolled him and they were okay with it, or so I thought. About a week after he started school, I got a call from the director asking if I could come in for a meeting. When I came in, she told me that Noah would not follow along with what the class was doing and was usually off on his own, doing what he wanted to do. I wasn’t surprised when she told me this and told her he had never been in a school setting before so could we give it a while longer just to make sure there wasn’t an adjustment period for him. She agreed and it was all good, until I got a call 2 weeks later asking me to come in again. The director told me she thought Noah had ADHD because he was unable to pay attention to the teacher at all. She said that he would not be allowed back at the school until I had him evaluated and he was on some sort of medication. Looking at this sentence now makes me so angry and I’m sure I would have tried another school and most likely seen a homeopath as well as changed his diet. That is, looking back now, what I would have done, but this isn’t that story…

Without giving you the long, drawn out version of the last 9 or 10 years, I’ll shorten it and keep it simple.

Noah has seen Developmental Pediatricians, Psychiatrists, Therapists and had some great support staff around him through the years. What didn’t help was moving from Pennsylvania (which had awesome supports for children’s mental health) to Florida (which so far, is extremely lacking in children’s mental health support) in 2007. His diagnosis has changed about a zillion times, but one thing will always remain: he will always have me there to advocate for him.

2013-06-05 10.52.08

I guess what I’m trying to say is that, if you are a parent or caregiver for a child with a diagnosis, whether it be a physical health, mental health, or Autism diagnosis, your job description just got way more complicated. In addition to the regular parental duties of nurse, cook, teacher, chauffeur, your duties now include:

1. Do as much research as possible on your child’s diagnosis

2. Attend every meeting regarding your child, since without you, there is no one speaking for him/her

3. Talk to other special needs parents/try to find a local support group if possible

4. Say calm, you will have worst case scenarios running through your head at first but with research and determination comes HOPE

5. Never be afraid to ask for something you think your child needs and fight for it, if necessary

For all of you special needs teachers out there, I know you are accustomed to the many, many meetings that are a part of your life and there must be a special place in heaven for the teachers who actually care about our children as much as we do.

Thank you for reading and feel free to leave me your comments on this post or about your experiences as a special needs parent.

Disclaimer: All opinions expressed are my own.


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