Invisible Disabilties

10:00 AM




 I have read many posts and articles about children with special needs.  They always focus on people staring and being rude. I get that, I totally do, but what about the people who look normal but are unable to form a full thought or take forever to get a sentence out?  How about those who prefer younger toys then their same aged peers?  They are considered weird.

When you tell others what invisible disabilities the child has they say, "But there is nothing wrong with her."  They say, "You are wrong and need to stop thinking that way." I have lived both scenarios with visible and invisible disabilities and neither is fair or right.

            When my daughter was very young she was diagnosed with mild Cerebral Palsy (CP). She presented in curling hands and had to wear braces to keep her hands straight.  One time at the store she and her four year old brother were in the shopping cart. My son was using American Sign Language to communicate with her since she did not yet talk. A woman in the store came up to my son and said it would be his fault if she did not talk.  She then asked what happened to my daughter’s hands. I told her they were braces and she accused me of lying insinuating that I did something to her. I was trying to walk away from the woman when my four year old said, "She has CP, you may ask questions."  I was so proud of him because he knew it was okay for people to ask us about her but we did not like staring and gawking.  I just walked away completely appalled with this lady.  That was when she was presenting physical and visible symptoms of the condition.  She is now 10 and does not present physically.

            At age two, my daughter was diagnosed with epilepsy as well.  Epilepsy has been our main focus since then because it has been the ailment that has given us the most issues.  Most people recognize epilepsy as seizures that make you fall and shake. There are several other types of epilepsy.  My daughter has two of the other types.  She has absence seizures, which are also known as staring seizures.  During these seizures, she stares off into space and you cannot get her attention. She also has myoclonic seizures.  Those present as shivers like a cold chill and last 3-5 seconds. You would think, "No big deal, right just a few seconds and done."  Not the case for my daughter.  They last just a few short seconds each time they occur, however they happen constantly all day, every day. They are so short, even I have a difficult time seeing them happen all the time.  Sometimes they are only visible on an EEG.  When we do see them, unfortunately there is very little we can do for them.  Since they happen so often, upwards of several hundred small ones a day, she is cognitively behind.  These constant seizures make her daily living very difficult.  Things we take for granted like conversation can be very difficult for her because she cannot form a complete thought.   She tries to plan things and forgets.  Some things that are simple for others are hard for her like following directions.  She still is a little young in the mind and loves to play with dolls and watch television shows for younger children. People do not understand why she likes Doc Mc Stuffins still or why she can’t understand something simple. When I explain I am often told, "Well she looks fine."  I also have been told, "She looks normal are you babying her."  She has had adults and kids tell her things like, "You’re not a baby," "You should like this," or other mean things.

            I am not sure how to make people understand that just because someone looks normal on the outside that does not mean anything.  Also, just because they act younger than their actual age this doesn't mean you can’t interact or play with them.  I understand sometimes it is frustrating to sit and wait for my daughter to finish a thought or to get out what she is trying to say but if you do sit, wait, and listen you would be amazed by her ideas and thoughts.


     In third grade she was doing kindergarten work.  We have made great strides using a special diet, medications, and surgery.  She is now going into 5th grade and doing third grade work.  She loves art and is very crafty.  She has great ideas and can come up with things I would never think of.  She also plays with a huge, beautiful imagination and wants to be friends with anyone who will be nice to her.  Her speech has improved and she is a wonderful kid.  Since the surgery, her personality has really blossomed.  She will tell people about her CP and how they can help her. She is not afraid of questions and welcomes them.  If she cannot answer them she will come to one of us for help.  Please don't judge, ask away, I welcome it as well.  She will hopefully catch up with her same aged peers completely but if not who cares. She is still a person and most importantly, she is my daughter. There is no normal and there doesn't need to be. The world just needs acceptance.


Staff blogger Sarah


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