Advocacy and awareness: Necessities and parts of daily life, part 1

I don’t claim to have life as a mother figured out, especially having a child with neurological challenges. I am guessing other mothers have more patience than I do, but I am certainly not giving in or being too tired to be strong. It really is just one day at a time.

I felt powerless before my son was correctly diagnosed with Tourette Syndrome, which took more than 5 years. As expressed in my previous post awhile back, I had a difficult time getting the resources and support needed for my son in more than one school in our district.

Though I felt relief and empowerment when we got the diagnosis of TS, I still have had years of work to ensure the school staff and district follow through with what my son needs. I heard the same responses that others have when their child struggles in class and social challenges.

I knew when I met the teachers which ones my son was not going to do well with. The look in their eyes when I went out of my way to explain how my child was different would be met with a familiar feeling of “another mother who is overreacting.”

ADHD is severely misunderstood, and teachers either lightly acknowledge it or they dismiss it as just excuses. Before getting the diagnosis that made sense, my son was only getting halfhearted support through special ed — but only through his IEP, not because he was in special ed, officially.

A 504 plan is not recommended unless your child is the exception to actually getting any benefit from it. Even with a diagnosis, the staff at his school did not accept it even after having an advocate do an in-service. They wanted a child who sat still and did what they were told. An IEP has to be followed up by the district, and though it is not a perfect system, there are more checks & balances than a 504 plan.

My son is now a freshman in high school, and though we have come a long way, it was a necessity to have him under special education to get us this far. He is mainstream while getting accommodations and aide help at school as needed.

I went through the usual struggles of being told for years that my son was too smart to qualify for anything while it was clear he struggled with all aspects of school. He was impulsive, had poor social skills, inability to focus, lack of organization, fine & gross motor challenges and sensory dysfunctions that were later diagnosed by the districts occupational therapy through my insistence.

I know of parents who are in denial because they cannot handle their child being “labeled,” but the truth is your child already has a negative label and the child is hurt more by not getting the support they need. I did not worry about my child having a special diagnosis or being under special ed because he would fail out if he does not have the support of special education.

People are shocked to hear that I got homework removed for many years and he is still advanced in everything but math, which is average. It was a hardship for him to be at school all day and then come home to struggle staying still to focus on work.

We were both being punished because he got to do nothing else and had no down time. It wasn’t an act, it was authentic and created more stress. I was not worried about his future if he couldn’t get through the school year.

The stigma of special ed only being for those who are mentally handicapped or “stupid” is pure ignorance. The fact is that the majority of those with TS have above average intelligence. Being in special ed does not mean your child will be in a classroom with severely disabled.

The benefits of special education help a great deal if you make sure they follow through. Having a support system in place is the only way my son can be mainstream, which is the most important thing. If you avoid it, fearing the same for your child, then you are adding to the stigma and hurting your child.

The worst-case scenario for me is if my son unable to be a productive person in society and enjoy life if I did ignore getting him as much help as possible. The sooner there is a support system in place,  the quicker they will have the tools to help them succeed.

I am aware that standing up and fighting for what you believe does not come naturally for everyone, but it is something a parent must do as your  child’s best advocate. TS is not a death sentence, but not being strong and supportive of your child can feel like it.

I’ll continue this post tomorrow. Thanks for reading!


  1. Special ed is definitely not special in every school. In some places it’s painful. How the teachers and administrators can get away with it is beyond me. But it sounds as if your experience has been a good one for the most part. You should find out what the model is the school is using and share it here so that parents can take that model to their schools and then say, “This is what we want here too!”

    • Hello Marc, I am not sure there is a model that is different than others, I struggled with the district and schools for years before having enough excuses and brush off’s. If you read my first blog, it was a lot of years wasted before I realized my son’s rights. What I figured out is that not all schools in the district have the full resources of special ed and recommend a parent insist on their child being at a school that offers them the resources they need. My son was at more than one school that only had part time resources which was a huge struggle. I had to be a pain to get what I wanted but TSA really gave me the answers and information needed to get me started in the right direction. Once I started my support group under the TSA Norcal Chapter, I used that and had advocates to sit in or do conference calls during IEP meetings. I have received lots of friction but it has been 4 yrs. of getting stuff approved that others have not. You just have to know your child’s rights under IDEA, recent legislation, etc. and being connected with organizations helps a lot.

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