- Fisher-Price Rollin’ Around Jungle Playground
I’m in a down mood right now. 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).
But today, 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.
I’m just sad…
This breaks my heart. Since first hearing your family’s story, I have hoped against hope that the doctors have made some error, that a medicine will ease Hannah’s symptoms. I will continue to pray for miracles to surround your family.
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I am so sorry. I know that along with challenges, you will also find many wonderful things that Hannah enjoys. It doesn’t make today any easier, but I will be praying for a miracle for your precious daughter and your family, as I pray for my daughter, too.
My daughter, Abby has many challenges, although different than your daughters. It hurts to watch our babies strugle.
I’m sorry, that’s really hard.
One suggestion might be to place the object further away from her so that she can see the whole toy at once. The further away the toy is the less she will have to try to follow it quickly. Maybe that would help. I’m very sorry as I’m sure this is all hard to deal with. Sending you a hug!!
Oh, Carrie! That’s heartbreaking. :'(
I was devastated when I realized Bertrand couldn’t put his hands to his mouth or pull himself up anymore. You just can’t help but feel, why not me? why my child? 🙁
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It’s simply not fair and it sucks. Hang in there.
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Oh, I’m so sorry. My heart goes out to you.
When my children were as young as Hannah they had difficulty following objects too, just like I, as a child.
I was able to train their eyemuscles enough, so they can follow normal moving objects.
When I was young, I couldn’t develop enough movement to follow speedy objects either. But I developed a sense for things.
At gymnastics I was never ready for the ball, but when it came near, I just smashed it with a fist. My teammates had to say “uh” when they got a ball, so I knew where it was.
I’ve never felt left out because of it.
In traffic I have to rely on my ears when I’m at a crossing. With the many trafficlights nowadays I don’t experience problems.
What’s more important than following fast movements, is a good eye hand coordination. She can practice it with you when eating, for instance.
Huggs
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How heart breaking. Instead of focusing on what she wont be able to do try to focus on what she can do!! Focus on the positive things and not the negative, sweetie!! Life is just too short and time too precious to not!
Huge HUGS to you both!
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