Pia Savage

Odd Girl In

In Their Own Words: Mysti Harrison On Her Daughter

Mysti and Leigh battle to overcome NLD and Turner's Syndrome

Posted Aug 03, 2012

Mysti Harrison’s one of my favorite people. We’re different as can be. Yet when it comes to the really important things in life—for us—advocating for people who can’t advocate for themselves we’re on identical pages!

Mysti’s getting dual Master Degrees in December in counseling psychology and child adolescent developmental psychology with a PHD to follow. She hopes to teach. I know she’ll be an incredible one!

 The interview begins with a statement by Mysti–-a battle cry really!

July 30th was TURNER SYNDROME AWARENESS DAY. Are you aware of what it is? Some of you know Leigh was diagnosed with recently with TS. Did you know only 1% of babies born with TS survive?? It occurs 1 in every 2000 to 2500 female babies (many of which, sadly, are not carried to full term). She is nothing short of a miracle! Missing or partially deleted chromosomes are what causes the short stature and fertility issues and often times learning disabilities—but girls and women that live with TS are WARRIORS! Each one may struggle with different things ranging from heart and kidney defects, vision loss, fertility issues, learning disabilities (NLD, which is a very significant struggle here) and various other things. Life is hard, but these girls and women face very different battles each day that they endure and others they will likely endure later in life (currently Leigh is waiting to undergo a gammet of testing and will hopefully qualify for hormone injections so she can reach a more typical stature).

 Educate yourself! It will only take a few minutes to do and in doing so... it cures uncertainty and ignorance everywhere! Many people meet my Leigh* and can just tell there is something special about her—take a moment, educate yourself, and help educate others—it goes a very long way. :)

 And in the words of Leigh: ‘Dream till your heart is content’.

I feel like, looking back, I KNEW something was off when Leigh started Kindergarten—when she struggled to learn her numbers. Once she was in first grade (her brother was 3 when she was 6)—my 3-year-old was coming up with answers that my 6 year old struggled with. The charter school we were affiliated with made excuses for these struggles for years. As she aged, the struggles with math became worse.

 After pulling Leigh from the charter school who refused to help her, I independently home schooled her, then had her tested by the public school. They immediately diagnosed dyscalculia and dysgraphia and alerted that there were problems with 'visual spatial issues'. This prompted a neuropsychologist visit, and an NLD diagnosis at 9 years old.

I found Facebook groups almost immediately. I felt that, without a community I would be a small fish who can't swim in a deep pond. They have been incredibly helpful along the way. At first, I asked a million questions to normalize my concerns and get information on the various techniques.

Now, I do a lot of 'helping' too, which feels wonderful to help those who are currently that small fish. Additionally, as my daughter ages, new struggles present themselves frequently. Having a board full of people who have 'been there' and 'done that' have proven an invaluable resource!!

On the Facebook group started for strictly parents and children with NLD, a new mother posted about Turner's Syndrome. I had read about it prior (in a book given to me by the school psychologist that entailed an NLD child who had Turner's) and I had the worse feeling then, but she wasn't affected in the ways I researched. She was 'small' but not 'too' small.

 Well, a mother in the group discussed mosaic form of Turner's. My brain then went AHA! I researched—relentlessly. I was able to find that individual's with mosaic forms of Turner's may not have all the physical characteristics, I was also able to find out that 99 precent of Turner's girls have some degree of NLD.

This was the moment when all the proverbial stars aligned and I just knew it. Two years ago, she was short for her age, now she's incredibly short, she is the size of most second graders, and she is starting sixth grade. Between her size, her (very) pervasive NLD, and other struggles, I knew Turner's was at play.

I found a new physician that would listen to me. I presented him with a letter to read prior to our appointment, and the doctor knew by looking at Leigh’s size, and looking at her records that a kerotype (a blood tested that evaluates the strands of DNA) was in order. Two weeks later the kerotype revealed a 10% deletion of X's and another 1% that is partially deleted—thus resulting in a mosaic form of Turner's syndrome.

Now we have an appointment with the endocrinologist here shortly where lots of tests will occur so that hopefully she will qualify to use human growth hormones to help her reach a 'typical' stature as well as to check her heart, kidney's and ovaries to have a baseline for the future.

Leigh really enjoys public school—although it presents a LOT of struggles. Her social struggles are becoming more and more pervasive, and she's not excelling as much as we had hoped so new accommodations are being put in placed. Part of me feels that keeping her home I could teach her exactly how she learns—but I know she desperately needs the experience and we wanted her to be in a 'main stream' high school environment. In order to do this, we have to work closely with the school to get her to a place where she can excel.

My only true regret is that I miss her. I miss her brother, too! However I have watched them blossom into wonderful people in public school, and their enjoyment of the setting is enough to affirm that my decision was the correct one.

Honestly just talking about this and knowing someone is going to understand NLD and TS from the eyes of a mother who cares endlessly for her daughter is important. If you're in a similar situation—you're NOT alone! Additionally, i'd like to add, when you see a small little girl, and you find out she's the eldest in the family, please do not say 'oh, you're very small', or 'oh your little brother is bigger than you!'.

Believe me, that child knows they're small, and there may be a reason WHY they are small that you do not know. Remember—speak how you want to be spoken to, and you never know another person's circumstances, the how's and why's—so it's best just to smile. Lastly, just because my daughter has a laundry list of struggles, and will not "out grow" all of her struggles, she's amazing. She is loving, talented, intelligent, creative and honestly, probably the most beautiful person I have ever had the opportunity to be around. She isn't NLD, TS, etc. etc. etc. She is my daughter, who happens to have these disorders—and is amazing anyways!

 We role play often. An example of how we utilize it would be in how she can handle social situations that perplex her. A young girl at school bully's her—she is downright mean. Leigh struggles with how to handle someone who is mean with intent. As she is not like this towards anyone except her brother, it simply makes no sense to Leigh why someone would purposefully hurt another.

So Leigh and I work towards practicing things to say, or things to do to combat this young woman. Such as if she says something mean, act like you didn't hear her, or simply walk away. We've practiced it at home. She'll be the 'mean girl' and I will be her, or visa versa. This has helped her feel more prepared for what may occur at school. In regards to limitations—YES!

 The struggles with social interactions increase as the child ages—when social nuances become more vague. Leigh and I could endlessly practice 'scenarios' and still miss the one she'll encounter. However, despite these limitations, the role playing makes her feel more in control of her social struggles, and to me, that is wonderful.

Last year there were a few times where she was able to handle a situation 'on the fly' instead of coming home, talking with me, then planning a strategy that may work. Knowing that she is getting the confidence to handle some social interactions spontaneously is a HUGE step in the right direction.

If you want to learn more about Turner's Syndrome here's a good place to start.

 *name changed

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