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My "reality hits" moment that I had a special needs child
We have known for a few months now that our 8-month-old Hannah has this neurodegenerative brain disease that was likely going to take her away from us in a few years. We know what the symptoms are, we know the process it is going to take…we know all of that. We know she is considered "special needs."
For whatever reason, it never really hit me that I had a truly "special needs" child until a few days ago.
We know that Hannah has “abnormal eye movements” with her supranuclear gaze palsy and lack of saccadic eye movements (ability to follow rapid eye movements). Not even going to bi-weekly IV enzyme replacement therapy, multiple doctor visits, and many procedures really made a dent in my brain about this for whatever reason. Denial? Probably.
But a few days ago, I really got to experience how the “lack of ability” (I’m not comfortable with “disability” yet) really affects her.
We bought this toy a couple of weeks ago. Basically, the three animals go down the curling slide with music. We thought it would be a fun toy because she loves placing things on other things.
However, we realized that when we put the toy on the top and let it go down the slide, her eyes stay stuck at the top, and she can’t watch the toy go down the slide because it is too fast for her. If we do it by hand, very slowly, she will watch it go down. But if we just let it go down by itself from the top, she can’t follow it.
How many things is she going to miss out on because she can’t follow something? There are so many things that move faster than slower in life. Watching or playing sports, so many different toys where things “fall down”, even playing rolling the ball when she is a bit older.
Don't know why it took this long to hit, but now I am beginning to see how this disease is going to affect her brain. This is just the beginning, and I have to accept the fact that it will never get better, only worse. Sucks. Really sucks.
You can read more about our fight for Hannah's life at LittleMissHannah.com (my nickname for her!)
Filed under Carrie, Day In And Day Out, rare diseases by
Comments on My "reality hits" moment that I had a special needs child »
Stimey @ 10:58 am
I'm sorry. Moments like this are really difficult. Hugs.
Jaime @ 11:02 am
I am so sorry.
My toddler was in therapy for feeding issues caused by sensory issues, but I didn't connect that with "special needs." I still remember the first time my sister suggested a certain toy as appropriate for a special needs child.
I hope your daughter enjoys the music from the toy and the separate little pieces. I've found that children often enjoy toys in ways that aren't expected. My son cares nothing for stuffed animals in terms of pretend or cuddling, but he loves to throw them. (They are the only thing he doesn't get in trouble for throwing.)
colleen @ 12:41 pm
(((hugs))) Having an older child going through these issues now …all I can really say is sorry…and all the emotions will hit some days and other days you will be as strong as a rock!
Maddy @ 1:15 pm
It does take quite a while for these things to sink in. We tried vision therapy with my older son but the prognosis was poor and the treatment was hideously expensive and not [of course] covered by our insurance. We all go at our own speed dearie and a deeper appreciation of other people's perspectives makes us all better people and better able to cope.
Best wishes
Heidi @ ggip @ 11:10 am
I can definitely relate. Although I am very comfortable with my son's diagnosis and the idea of him being different, I do have these moments too.
Ecki @ 12:04 am
I can so relate. April 5 was my daughter's 5th birthday. And I'm standing in the baby aisle wondering what musical flashing toys she would like. When I was really wishing I could be in the Littlest Pet Shop aisle.