May 28th, 2008
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Categories: Special Needs

Two of my children have special medical needs, and one has grappled in recent past with mental health issues. Whenever possible, I try to involve my children in the process of caring for their conditions, knowing that at some point, the majority of care regarding it will be transferred to them.

My oldest was diagnosed with Type 1 diabetes shortly before his third birthday. About a week after his fourth birthday, he began checking his own blood sugar – yes, with a lancet – under our close supervision. Now, at almost 10 years of age, he does entire infusion site changes for his insulin pump.

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When he was diagnosed with epilepsy a couple of months ago, we also heavily involved him in his own self-care. He measures out his anti-seizure medication every morning in a dropper, and takes it himself.

Because he is a “tween” and becoming involved in things where I won’t constantly be around him, we are transferring more and more of his medical care to him. However, I try to balance that with the very real understanding that, for all intents and purposes, I am still dealing with a child. Thus, I try to create checks and balances for him. He has a “kiddie” cell phone (pre-programmed phone numbers, etc.) for emergency use in case of a medical emergency. He wears a medical ID tag. And, today, I purchased him a vibrating watch to help remind him of when he needs to check his blood sugar. I was thrilled to find the one I wanted, so that I no longer have to constantly ask him if he’s checked his blood glucose, if he needs to check his blood glucose, if he will check it in two hours, etc.

I’ve tried to do all of this for several reasons:

It’s his condition. Flat out. Though I still check his blood sugar in the middle of the night (he sleeps right though it!), and stay awake if he is high or low, it is still his health, and the conditions he has will be his for his lifetime. Thus, to do all of the work for him robs him of the understanding of the seriousness of it all, and it will be a great shock to him when he has to do it all for himself.

Having done it the way I have, he has developed habits that are now ingrained in him, and will continue beyond his stay in our home. On so many of the parenting lists I am on, parents complain about how their kids slack off or forget to properly care for themselves. My son knows no other way of life, and has tools to help him continue the good habits he has formed.

Some parents have argued that transferring so much of the “burden” for their conditions to our children somehow “robs” them of their childhood. I don’t agree. My husband and I still do a great deal of hands on care for both of our children’s conditions. But, it empowers our children to learn more about their conditions. Further, they appreciate being involved. My daughter takes great pride in remembering – on her own – to take her medication each morning! She feels like such a big girl swallowing a pill, when most six-year-olds need their medications in liquid form! Finding positive and age-appropriate ways to have your child be involved in self-care need not “rob” your children of anything. Further, if the child truly has limitations of any sort, they do need to be aware of them, for their own safety. Because my son is so used to checking his blood sugar before every meal and snack, it won’t be such a big deal to check it before getting behind the wheel of a car, when the time comes for him to begin driving.

Children can and should be involved in understanding their special situations and caring for them.

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3 Responses to “Helping Your Child Take Ownership of a Special Need”

  1. Julia Fuller says:

    I had my daughter taking her own medications by 13 (she came to us at 9) Once she began driving, at 17, I had her take herself to her appointments to pick up her perscriptions. She knows the seriousness of her medical and mental conditions. At 18, she quit taking everything and remains off everything at almost 20. Her birth sister and I have explained the serious ramifications of her decision to her.

  2. Julia Fuller says:

    I should add though, that I continue to include the children still living at home in their care decisions and medication administration. I bought Lyn a talking watch that had 4 possible alarms. It only lasted for 3 months, though.

  3. Wow, Julia! Although, I think, too, that’s “par for the course…” Kids get “tired” of their conditions or go through that rebellious period. But, sadly, they often pay the price in the form of a health crisis. Hopefully, she will return to the good habits you instilled in her.

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