(Submitted with permission)
Hi Arlene,
Yes I have a daughter, who is now 22. She has been having seizures since 4months of age. It all started after an immunization shot. She has tried all the drugs, tried the ketogenic diet, had a corpus colostomy and has seen a few naturopathic doctors.
She has also tried every thing that I am aware of that is so called natural But all said and done she is still having seizures. She will go almost a week sometimes but for the most part she has seizures every other day. She is developmentally delayed. On days after she have had a couple of seizures(tonic clonic) she is really, really bright and I thank god if she could only be that way all the time, she could lead somewhat of a normal life!!.
But in all honesty I would not care about her delays if she didn’t suffer from those darn seizures. She has a lot of falls ,which are worse than the seizures. You just can’t turn your back on her for a second, for fear of her falling. She has no privacy whatsoever, can’t really go to the bathroom by herself because we are afraid she is going to fall.
Thanks for asking.
Naomi Keeping
Privacty and Autonomy
While for different reasons, my son has no privacy either and, as he ages, it becomes more clear that he's uncomfortable with the help he sometimes needs.
A few months ago, he sat down in the living room and just cried, saying: I don't want you to help me in the bathroom. Problem is, I HAVE to. And, I prefer it be me, but I'm unsure that he does. It's frustrating and I even feel a touch of fear when I consider him having to rely on others (i.e. NOT ME) when he is an adult.
This is why I'm such a huge advocate of teaching self-determination and self-advocacy skills. Staff usually cringe when I say it, but in one presentation I give, I talk about how we should all teach our children to say "No".
It's the most powerful word you can use and its easy to say non-verbally (I think we all know that as mom's - at least if your chid has ever refused something; like meds :) I think the mom you quote is extraordinary and a great example, so thanks for sharing her story. Amber Kane