A letter from a Special needs parent


I originally posted this on my facebook back in June in a Tourette Syndrome group. This is from my mom addressing the whole way she raised me. 

Images a TS mother… something that until recently I don’t think I ever said out loud…. I agree that not only does my adult daughter have TS but that I wear it also every day. — its always there, its always on my mind I always want to hear she had a good day, that things went well for her. I am sad my remarkable daughter has TS. and yes, some days I cry. I cry because I feel I brought this perfect being into the world and then one day I realized there were some issues. since nobody was talking about TS then and no doctors had any answers to anything I just knew I would treat my perfect little girl like I would any other child in my care. 

This was my daughter and with or without issues my mission was to teach her from day one everything and anything I could. 

I wanted to make sure she could be able, capable, smart, articulate, involved, interesting and interested in life. and so the years went by and she blossomed — there wasn’t really anything she missed – the awards came, the activities mounted. she graduated from High School with honors, was accepted to a conservatory for her excellence in music, later transferred to another college where she got sick and its too long to go into here and then on for a Master’s Degree while working all the way. she insisted on taking a job at a local bagel shop at a very young age. she is now married….

SO what I think is important for any TS parent to remember…… we the parents are not going to live forever. our children are a bit different…..NOT LESS CAPABLE just different…. so it is important to EMPOWER them, don’t limit them with your fears. 

When they are young get them involved, activities are excellent, keep them busy, let them experience anything that seems of interest to them, teach them how to stand up for themselves, and you as parents get involved…and yes I know often both parents cannot accept TS so you be the parent who does make sure the school knows who you are and that you stand BEHIND YOUR CHILD – give your child the power, the words and the knowledge to allow them to speak up for themselves knowing you are in the wings as backup.. get yourself involved and if you have a day where you just feel overwhelmed and want to cry go right ahead – I do. 

whatever is wrong with your kid u have to help them have a life not only as long as the parent is alive but as long as the offspring is alive….. Then I wipe my face and remind myself how lucky we all are because TS can knock you down but isn’t fatal. 

Nobody ever said parenting is easy – but the choices with TS are deal with it, or deal with it. SO, LETS DEAL PEOPLE… SO LETS DEAL PEOPLE …the absolute best way we can!!!

Stuff my Mammy taught me…


Way back in 2000, before it was getting time for me to leave for school my mom took one of those fat little note books and wrote me a “mom says” book. Well, when she made it for me I didn’t think it was a big deal… it was kinda silly to me.

Funny how much things can change in 13 years…right? Anyway, I went out to breakfast this morning with a friend of mine, she spends a good amount of her time very down. We worked together at one of the food stores…and I was listening to her talking, and really trying to hear what she has to say … and most of the feelings I have about that conversation I need to keep to myself… But, really… that’s not the important part of this

As I was driving us home it occurred to me about how true this book my mom wrote to me is. How different parents raise different children with different values. Now, I’m not saying anything against her, or her mom. I’m not criticizing or even being rude. I just see that my mom was the best mom for me, and my issues.

So I’m flipping through this book she wrote for me, and I have a lump in my throat reading it … I LOVE my mom

I realize that I’m naturally a quiet person, who gets the most out of writing things down … for as much time as I spend on the phone/fb/twitter… I don’t really say anything, and the less I care about if people hear me. That I try to be modest… and I’m working on not being a know-it-all, and I know I still can be… and of course I can be self centered too sometimes. Oh, and I cannot save everyone. The Doctor needs to be out.

But my mom wrote in this book:

  • It costs nothing to be nice
  • A kind word can make someones day
  • Try to be fair
  • Be honest with yourself
  • Surround yourself with people who support and encourage you in all your efforts
  • You are responsible for your own happiness
  • A good reputation is worth protecting.
  • You will only get as much out of life (or anything) as you put into it
  • start each day with a clean slate
  • Know when to shut your mouth
  • Mind your own business!
  • The universe keeps score
  • learn from your mistakes 
  • Everybody does NOT have to like you and YOU DON’T have to like everyone either.
  • say a prayer for anyone who really annoys you
  • GET A GRIP

and yeah, there’s a TON more there than what I’ve written here… but that’s really what I took from this mornings activity…

now…

I’ve taken my pills, (and a little extra) I’m still very stiff and keep locking my spine, and I have the gigantic jerking motion. There’s a spot at my shoulder blade that is KILLING me….So I think that means I should go back to bed… after all, I do have a man in my bed 😛 Hopefully after MORE sleep and a little Tolkien today is going to be just fine.

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