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Are you embarrassed of your special needs child?

A Mother's journey coming to terms with her daughter's disability

Photo: SImon Rae
Photo: SImon Rae

 I’m sure your initial reaction would be, “OF COURSE NOT!”  I know mine was, and I know it’s an absurd question, but one that’s surely projected onto parents of special needs children.

 I have a 25 year old daughter that was diagnosed with neurofibromatosis when she was 3.  Neurofibromatosis means that little tumors attach themselves to nerve endings, and this disease has affected our daughter in numerous ways.  To start, she’s considered mentally disabled, has balance issues, multiple health problems and numerous other attributes that make her “special needs.”   

Because of this, I have spent her whole life defending her.  For example, in response to her not yet walking at the age of 2, I would explain to everyone that she was just a late bloomer.  Another time, I was casually walking through the grocery store, when a passerby asked to see my baby.  I, of course, proudly said sure… not expecting the response of, “She’s beautiful, is she down syndrome?”  I was incredibly embarrassed and said “no” and left quickly.   At the time, I had no idea that anything was wrong with my baby, and I was shocked that someone would ask me that.

 As my daughter got older it got harder, because she would act different and people would notice.  For instance, she won’t order her own food at a restaurant.  Her mind would just go blank and she couldn’t speak and it terrified her.  She wouldn’t look in the mirror unless forced to.  She had no desire to look presentable, wear matching clothing  and didn’t care if her clothes were inside out, or even on backwards.  She would walk into the room when company was over and I would quickly have to usher her into another room to redress what she had put on.  I’ve learned over the years to not only accept that this is going to happen but to expect it. 

 When I was pregnant with her, I did everything correctly, read every book, took my vitamins, went to every appointment, etc.  I didn’t even drink caffeine!  I remember when people asked me if I wanted a boy or a girl – I would say what everyone says, “I just want a healthy baby!”  But honestly, that was really the furthest thing away in my mind, as I wanted another girl and I just assumed she’d be healthy! I was 23 years old and this was my second child and my first girl was, and still is, so strong and extremely smart.  Nobody ever really thinks that something would go wrong.  Despite some complications when she was born, we were eventually cleared to go home with a healthy baby girl.  She wasn’t diagnosed until she was 3 and I was told not to have any more children because this was a serious condition and it’s a genetic disorder… I had already had another baby by the time we found out the diagnosis.

 I know most people would never admit to being embarrassed of their special needs child, but I see it every day.  Maybe ‘embarrassed’ isn’t the right word and there’s another word that would be more appropriate? 

 Do we in some way feel that we failed?  I know, I do.  When our daughter was diagnosed with this disease the doctors said it was hereditary.  I was sure it was my fault, that I had done this to her.  It had to be me because I felt I was not as intelligent as my husband, that it was my family lineage that the disease came from.  It took me years to finally admit my feelings to my husband because I didn’t want him to see me as the failure.  The crazy thing is, once I did tell him, he said he was feeling it was all his fault too!

I see parents on social media, or in person, that show so many more pictures and achievements of their “normal” children than they do of their special needs children. They will take out their phone and show me how their other children have done in sports or college. They are so proud!   It’s like a validation that they are a good parent. Do we hide our children with specials needs?  Do we cringe when we hear about the great accomplishments of other children? 

 As special needs parents, we explain why our children are this way or why they act out.  I also hear parents say, “I wouldn’t have it any other way,” or  “I’m so glad they were born this way, it has changed me as a person.”  I know all of the different things to say because I’m one of these parents and I’ve said it all too.  I would do whatever it took to give my daughter – just one day – of “normal”.  What would it be like to be able to see her go off to college, to see her drive a car, to see her live on her own.

 My daughter (now 25) carries around barbies wherever we go. Not just a couple barbies, lots of barbies.  Years ago, when life was too hard for her because kids at school were so cruel, she started living through her barbies.  They were her friends and she created characters and backstories for all of them.  She would spend hours getting them ready, which is ironic because she has no care in the world what she looks like.  And I have to admit, when she would bring the barbies out at restaurants and I would see people staring, I would get embarrassed.  This all changed about a year ago when my oldest daughter got her started on Instagram. She helped her create a page that was called Shrunken Adventures and chronicled the lives and adventures of her little heroes.  Now, she has a few thousand followers and takes these barbies all over the world.  It has since become a passion for all of us, and when people stare we politely tell them about Shrunken Adventures. People are in awe of her and ask to take pictures of her dolls, too, or ask to be in the pictures. This has opened up a whole new world for her, and for us too. 

 I have been embarrassed at times, because I don’t like to stand out from the norm, but I have learned that we are all different and we are all special in some way.  I’m continuing to embrace having a special needs daughter and all that it’s teaching me.  I’m learning that it’s ok to have a child that’s different, and it’s ok to take time to explain to people that she is different.  I can’t change the way some people are rude, but I can change the way I am and how I present her to the world.  

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