See this picture of me and my amazing beautiful butterfly Gracie, who is 10 years old? As the old saying goes “A pictures says a thousand words,” like how I love my daughter to the moon and back, but most of the time they don’t show the reality of the struggles families go through.
For instance, this photo session with my family was scheduled for a half an hour. Well, this particular session took an hour and a half and a very patient photographer to get these amazing shots. We were all sweating from jumping around. My make-up was running down my face. Someone broke a shoe and we got grass stains trying to get a good picture of Gracie smiling. It looks like we were all having a blast, but in reality, it was stressful on everyone - including Gracie.
I know a lot of families have daily challenges, but I have not been able to find a family that can relate to our particular struggles with Gracie’s Nonverbal Learning Disorder (NLD). I have many friends and family members that witness the struggles and they are emotionally supportive, but I am in search of families that can totally relate because they live through the same challenges.
My local TS support group is active and amazing, but the girls with TS I have met are far ahead of Gracie, intellectually and socially. I’ve been to several TSSUS National Conferences, attended all the lectures on NLD, and chatted with a couple of families online who have similar struggles, but still haven’t met the families I’m sure are out there. Are they staying at home because it’s too difficult to take their girls out in public unless they have to?
Believe me, I would totally understand that! Gracie darts off into traffic and runs away from you in crowds. She will throw a full out tantrum if she doesn’t get what she wants; she is deathly afraid of public bathrooms because of the automatic paper towel dispensers, and she loves to talk loudly in places where she should be quiet, to name a few.
Our family has gone, and continues to go through, so many tough times and sometimes it feels like there is no light at the end of the tunnel. I’ve read several articles that say statistically, 80% of marriages end in divorce when there is a child with special needs. My husband and I have been lucky enough to work out our frustrations, but it has not been without close calls.
Gracie is several years behind in all education subjects. In addition to Turner syndrome, she has been clinically diagnosed with NLD, ADHD, OCD and autism. She still doesn’t speak in full sentences and takes a very long time to respond to questions. She stems, flaps and audibly repeats the same sentence for hours on whatever she is focused on that day. She has no close friends, and as a mommy, it breaks my heart to see children playing together on the playground and Gracie always playing alone.
From the time Gracie was able to stand, she would bang her head on the walls - putting holes in the drywall. When she was 6, she put her head through a window. She has gone through very aggressive stages with scratching, hitting, and kicking teachers, her sitters and me.
She’s been kicked out of several day cares, which resulted in a lot of missed workdays for me in summer months. We are constantly researching and going to doctors, therapists and fighting insurance companies for medical help. We have tried numerous medications, looking for the “miracle pill” with no success.
I know writing this letter might be depressing, and seem like I’m focusing on the tough times instead of my 1% miracle that God has blessed me with. I am just hopeful that I might reach families who feel alone, and that I also might get support from those who have come out on the other side.
I have no problem sharing my struggles, and I’m always willing to share my success stories. Isn’t that why we have a support group? WELL, MY FAMILY NEEDS SUPPORT! Thank GOD for TSSUS!