I've had people writing to me asking exactly what is wrong with Janelle. She is what is known as multi disabled. The list is long and some of the conditions are not known by many people so I will try to make the list as simple as possible. Trust me I had a lot to learn with some of these terms too. I will list the symptoms of each condition as well in case anyone'schild has something similar.
Her first dx at 3 months was Nystagmus since then she's had three other eye conditions added.
Nystagmus is characterized by involuntary, repeated oscillations of one or both eyes, and the disorder often affects the nerves behind the eye and not the eye itself. Movements may be horizontal, vertical, circular, or a combination of various motions and speeds. Nystagmus affects people in varying ways and degrees. Although most affected people view objects as stationary because the brain is thought to make the necessary adjustments, many often have reduced acuity because of the challenge to maintain a fixed focus. People with nystagmus tend to see objects in lower contrast, and many experience problems with depth perception that affect balance and coordination. Some of those affected with the disorder tilt their heads or display nodding to compensate for the impairment or symptoms.
You may notice in older pics of Janelle she held her head to the left side.
http://www.visionrx.com/library/enc/enc_nystagmus.asp
Diagnoses number two was delays in all areas. She began receiving speech, OT, and vision at home.
In Janelle' case her OT was because she didn't hit any of her milestones for about 6 months after she should. When she started ot she was pretty much on a newborn level for many skills. Speech delays were noticed because he didn't cry, smile, wave, babble etc and vision was for her visual impairments.
Third was a feeding delay and severe eczema, and SPD
She didn't eat solid food until she was almost 2!!!! We had a special way of putting the spoon in her mouth to get her to take some baby food. She cried whenever she was forced to touch anything gooey like shaving cream, glue, loved light, resisted touch etc etc. She also had eczema so bad her skin would bleed.
fourth tight right foot adductor muscle
She stands on the side of her foot. It was at this point she was also dx'ed with bow legs which turned out to be knock knees.
fifth severe asthma
She's had 3 major attacks in the last year and a half she had her adenoids out in the spring but it didn't help.
sixth more delays and hearing loss this is when she got a private aide
She now receives PT as well because she doesn't jump off things, has trouble on stairs . The aide helps her to not make good her escape and to give her one on one for teacher led activities.
seventh PDD-NOS (Likely to be changed)
This is a new DX and she may be moved into a different autism spectrum category
And now Chromosome abnormalities. Which in the end caused everything.
The chromosome abnormalities doesn't have a name. Her genetic doc put it this way she has extra on chromosome 15 and missing part of chromosome 19. He said it is rare to have both of these at the same time. Not unheard of just rare.
I'm sure there have been other things I have missed because there have been things they said she had that turned out not to be the case. This list may seem long and people may say how did you deal with so much. To that I say it has been a slow process. These things were not diagnosed all at once. Itwas one thing after another over almost four years. At one point I asked is she ever going to get a negative test?
I also want to add that people have been cautious about asking me questions about Janelle. If we are in public you can tell someone wants to ask something, but they don't. I have also had friends apologize for asking me about her conditions. Please don't feel like you can't ask or that it's rude. I want people to ask. I want people to understand what is wrong with her and not fear it. Trust me after people spend a little while with Nellie they forget all about the fact she is disabled. What I do find offensive is when people make comments. The worst was when she was a baby and people would look at her and say oh my what's wrong with her eyes with that shocked disgusted sound in their voice. Please have a little tact. Ask instead I notice her eyes shake what causes that? In other words think before you word your sentences. If my younger children can do this so can adults. For example we saw a young girl who had a bone condition on our last trip to the hospital and my six year old did notice this girl immediately. Her response was mommy was that little girl born that way? I say yes I believe she was. Emma says mommy that chair looks like a lot of fun do you think she races in it? I said I don't know go ahead and ask her. Being shy Emma didn't.Never once did they make the little girl feel like a side show.
There are proper ways to approach the parent of a disabled child. If you're not sure the right way imagine that child was yours and think of how you would want someone to ask. I guess in a way it's easier for me having been in those shoes.
I'll finish this blog today with one simple request. Teach your children from a young age about disabilities. Try to put them in situations where they will be exposed to people who have disabilities. Young children may embarrass you at first and ask some outlandish questions or even show their shock. After talking to other disabled adults I have learned when children do these things it's not hurtful to them. In fact many will talk to the children and explain things in a way they'll understand. It's by teaching your children that they learn understanding and acceptance!
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