Friday, January 17, 2014

I Was Gone for a Minute, but Now I'm Back

I have sat down and started numerous entries. A part 2 about my weight loss, about our big move into our new home, about my darkest day this months, but something was blocking me.

Grace has been struggling immensely at home and at school, between her meds, diet, and not being in her home for a year...oh and plus being on the spectrum. The past 2 weeks we are moving upward and onward and things are looking much better. So I guess a part of me is feeling more at ease share and blog?

I am getting off topic, as usual, FOCUS, blocked, so I have been blocked. Every time I would sit down to write, my hands hit the key board and there was no flow, just me pushing and squeezing mini thoughts past this huge wall that I couldn't see past. I realized what the wall was or is rather....'

It is partly that I have not been completely honest with my readers about Grace, and my biggest thing I strive for with my blog is honesty, good, bad, vulnerable, sad , mad...I always write honesty and never sugar coat.

Grace was diagnosed with Tourettes Syndrome, and we have been quiet about it. I am not sure why? I am having a hard time processing it. Why Tourettes too? Doesn't she have enough to deal with, doesn't she stand out enough already? She makes noises over and over and I cant stop them. There is nothing I can do. I cant tell her to stop.

When the doctor confirmed it, I pretty much knew the past year or so, but when kindergarten started her ticks have been through the roof. I am attributing it to the stress of being in an integrated environment coming from a self contained class room years before.

We threw her on meds without any questions. It was probably one of the most impulsive decisions I have ever made with her and the top 5 worst mistakes I have ever made as a parent. I put her on meds for me...because the ticks bothered ME. How selfish? I look back and I can not believe I did that to her...The meds made her worse it was like she was an addict coming up and down off of a high. She would sleep during the day and the afternoons, and when she was awake, it was like my Gracie was not even there. "But her ticking was gone." I thought to myself. Yea and so was her personality. Her meltdowns turned into psychotic episodes, a switch was off in her brain, the same switch that made her tick, but also that switch made her a functioning child.

Enough was enough, I waited 3 weeks and weaned her off the TENEX. Her ticks are back, but so is my Gracie. My girl is present, she is back to giving me a run for my money and back to making me laugh and want to pull my hair out at the same time. She is stable.

I feel so ashamed that every time she ticks, my heart drops, and I feel angry. I am so mad...Every tick is a reminder to me, I can not fix her. This is my biggest battle as a special needs parent...there is no band aide or cream or antibiotic to rid her of her ticks. I can't give her a lollipop and tell her to stop. I have to sit and experience it with her.

Last night, I could of slapped myself across the face. She was gulping and gulping over and over, and it was like nails on a chalk board. The madder I get, the sadder I get, because I feel like a monster. She is my baby girl and I should not feel this way. After she went to sleep I had some time to myself to reflect and gather myself.

I made tea and sat and just felt the guilt dripping all over me. I was so ever feel this way, but I had to admit it to myself so I could move past it. I needed to break down the wall that was blocking me. The TOURETTES wall. It is OK to feel this way, we are all human. My denial finally faded. It's OK, I said to myself, It is going to be OK. I just was breathing deep...saying it is OK. With each breathe the anger, guilt, denial left me, little by little. My eyes closed and the tears came, but they were tears of healing and happiness...all these months I was held captive by these embarrassing feelings...and now I was finally free.

Her ticking doesn't affect her day...she is learning, she is happy, and she is thriving, she has autism, and Tourette's.

I forget, it is not about me. I constantly have to remind myself. It is about her. Her ticking is apart of her and if she needs to gulp 300 times in a row at the end of the night, I will sit by her and love her and be there for every gulp. I will try to heal the Tourette's for her, but not for me. And for now she is OK. So we have entered the beginning of our next adventure, Tourette's, and we will make it, because we always do. I know I will make it, because I have Grace as my daughter, and the lessons I learn from her every day make me stronger and better.

Strength. Love. Acceptance. Onward. Upward.

Four words that mean more than you'd ever know to me.


  1. hugs mama! I get this. For two reasons. One, my brother has Tourettes and growing up I was embarrassed of his ticks. I now realize how wrong I was. And 2, we put Liam on Tenex when he was first diagnosed bc he was having a nervous breakdown. Literally, I am not kidding. The Tenex made it worse. To the point where hospitalization was suggested. I said no. I weaned him off of it and he was fine. He was still having issues, but therapy helped him work thru it. That med is awful, and I hate hearing ppl say their kiddos are on it. I know what it did to my boy and I would hate to see that happen to any kiddo.

    Kudos for your honesty, and hugs to you all.

  2. Grace is such an amazing beautiful girl. With all her diagnosis, she is still her beautiful spunky little self who steals everyones heart who comes into contact with her. She is amazing and im glad to know her and YOU <3

  3. Your Grace is a beautiful, special, unique person, with little quirks. They make her who she is, please never feel bad or guilty about anything you do. At the time you feel its the right thing, but when you have had time to think and see how your little girl is affected, then you can change things that are in your power to do so. Bless you all, enjoy all that you do and experience through life as a family,