Advocacy and awareness: Necessities and parts of daily life, part 2

This is the continuation from my post yesterday. Read that one first, if you haven’t yet! :)

My son had complex tics when he was diagnosed with Tourette Syndrome, but those tics subsided once life stresses were reduced and we were on the right path.  We were running away from tics with a trial and error of two pages of medication because we were told by my son’s Child Psychiatrist that it was the meds, while never suggesting it could be TS. Once we knew better, after consulting with a Child Neurologist, everything started falling into place, and his tics subsided. My son’s meds have been handled under the same Neurologist which simplifies our lives.

We are more fortunate than others because my son’s tics are mild in comparison to others, which often makes for a great conversation after they have been around my son long enough. They are surprised when I share the facts and they are intrigued enough to ask questions. Like many, they presumed Tourettes was just complex tics. Though I appreciate TS Awareness, I feel that only showing the severe cases of tics has made it more difficult when it comes to people really believing that my son has TS.

My advice to other parents is to never to accept the opinions of professionals as fact or what is best for your child while ignoring your expertise on your child. Ask questions and question what does not sound right. No one knows your child better than you.

Getting professional help is essential, but a one-sided approach is not realistic or beneficial when it comes to TS.  Ignore those who make judgements, and don’t feel guilty if you choose medication because it is not a decision made lightly.

If a child cannot function or learn, it is your responsibility to be proactive. Follow your instinct. This is especially true when it comes to your child’s education. Become educated on TS so that you can make the best informed decisions. The more involved you become, the more tools you will have to advocate for your child.

My response to a special education teacher’s lack of enthusiasm when told to do certain testing for my son in 5th grade was, “I did not ask for your opinion, and I am not interested in it so just do what I have asked.” Her opinion was incorrect which is how I got my son’s Auditory and Sensory Processing Dysfunction (SPD) diagnosed.

I have also told the same special ed teacher,  “We don’t need to be friends, but you do need to do what is required to assure my son’s needs are met.” Abrupt, but sugarcoating it would have done nothing considering the facts that I will spare you on.

I have complained to superiors of special ed representatives when I did not feel I was being taken seriously and have had it work out for the best where we have a mutual respect. I know how to be clear and concise and never make my concerns sound like questions.

I let them know I understand they have many children to help but it is my job to assure my child’s needs are met. When I bring up an issue I always include that something is unacceptable or that I want clarification. Telling them “I don’t like this” will get me nowhere.

Certain words such as “Are you refusing to do what I have asked?” works amazingly well and gets results. The truth is that with everything in life, if you don’t speak up, nothing changes. Yes, it is highly possible others will not like you when you hold them accountable, but why does that matter if your child is not a priority? You can be firm and respectful. If they feel you are just blowing smoke, they won’t take you seriously, so arm yourself with facts and follow through.

I have built up a good repertoire with the current superintendent and he was so impressed with my introductory e-mail that he responded within 24 hours and insisted on his special education director meeting with me  The director and I had a very nice conversation in person, and I walked away feeling good.

I copy any e-mails of concerns to  her that I send to teachers that have to do with previous issues I have experienced in special ed. She encouraged me to do so, which makes for a more quick resolution because she is their boss. I always tell her how much her support is greatly appreciated.

If you have not already reached out to a support group, having an Advocate or other parent to be there for meetings or otherwise is essential. The experts at TSA have done wonders when needed. The New Jersey Center for Tourette Syndrome is another good source of information, too. You don’t need to be alone in advocating or while just surviving the daily challenges of life, but I understand why parents often become complacent in accepting isolation as the norm.

My son is a freshman in high school, enjoys Kung Fu and in combination with being in the Air Force ROTC program has done wonders for my son’s confidence and social interaction. He is happy to go to school which is something I was not sure would ever happen.

The meds my son takes are not for tics because like others, meds usually increase the severity of tics. They do help offset symptoms of disorders which in turn minimizes tics because there is less stress. My son notices a small difference in alleviating the symptoms of his disorders so he prefers to take them. Though my son does not benefit as much as others with the efficacy of meds, it is better than nothing with the challenges in daily life. I am aware that there are no meds that will miraculously take away TS and that we will likely face hurdles for years to come.

I am proactive in my son’s life and education. Though I am often tired, I can never allow myself to tire of doing what is needed. I still have to be clear and force follow-ups but I am used to it. I am not on edge waiting to get a call from the school or hear about something negative when I pick my son up from school like years before, but I do still get a random email on missing assignments.

I advocate and bring awareness for my son and TS because it absolutely does and will make a difference. I have a bond with other parents of children with TS because we share a commonality that others don’t understand. My support meetings are often filled with laughter and sometimes tears because we get it.

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