Oct 26 2009

Blogging for Kids with Disabilities (2009)

Posted by Lisa in Uncategorized

Four years ago I was asked to join seven other bloggers–parents of kids with a variety of disabilities–to blog in an organized fashion on their behalf. Educate. Advocate. Each year since I’ve continued the practice, albeit solo. This year I’ve been joined, again, by a coordinated group (a list to which I will be adding their URLs as they post):

Another Damned Medievalist
Cis Masque
Tamela J

(eta: this is an excellent comment)


Parenting children with disabilities is challenging on a number of levels. In the case of my family, the disabilities are (initially) invisible–mental, emotional–but no less present. I addressed some of those challenges (and the specifics of our situation) last year.

This year I want to introduce you to one of our challenges that you might not initially consider an issue: in addition to our daughter we also have a son. He is neurotypical.

Time did a piece on this awhile back (Autistic Kids: the Sibling Problem) and although Emma is PDD-NOS (atypical Autism) with other issues, the article does cover some of what we have seen.

But not everything.

Colin is a very, very bright seven-year-old. He reads everything he can get his hands on, manages video game strategy better than many adults, and picks up vocabulary like a sponge. He’s also immature for his age, not well socialized with his peers, and has anger-management issues that clearly result from the situation at home. Immaturity isn’t unusual in boys his age—although in many ways he is more mature than his sister, so it’s difficult to know where normal range ends and modeling his sibling’s behavior begins. A tendency to be awkward socially comes naturally, whether he takes after his father or I—neither of us were social butterflies. But how quick he is to anger, how what seems like a normal level of frustration will send him off-kilter, is a side effect of his environment.

It’s not easy living with Emma.

It’s not easy when you’re an adult who understands the context of her behavior and has maturity and experience to draw from when dealing with some of her most extreme outbursts. For a child it must be like living in constantly-shifting reality where the rules and outcomes are never expressed and randomly enforced… where expectations for him and for his sister need to be tailored to the child and the situation, even if we do actively try to maintain some semblance of consistency. He is as constantly under stress as his father and I, but he doesn’t have the skills to cope with it. Even so, he does his best.

As do we.

When he was an infant I had her help me as much as possible, to offer her opportunities for bonding (she loves babies, whether dolls or real). As he got older (and independent!) their relationship began changing. She runs hot and cold, and her random moods and reactions were often directed at him. She tends towards verbal and physical outbursts when her meds aren’t in her system, so the early mornings and day’s ends were particularly traumatic. And it’s only gotten worse as he’s modeled her behavior back to her and as he’s achieved levels of skill that she can’t reach, herself. Despite our breaking up countless arguments/battles, no amount of talking to her changes her behavior, and no amount of talking to him can truly make him understand that Emma going from I love you to I hate you in a matter of five minutes without any outward provocation is just Emma and not him. It’s anxiety-inducing to live with a time-bomb, and it’s depressing to be constantly belittled, insulted, and harassed (I know, because I’m a main target for her abuse, too).

So now we attempt to keep them separated.

I wake him in the morning after Em has left the house for the bus, so he doesn’t have to deal with the shrieking harpy she is when she first wakes up. When they were both in elementary school and riding the same bus, this was impossible… and it resulted in a lot of calls home last year, because starting the day off with verbal abuse and (no other way to describe it) crazy directed at you set him up for a very bad day at school.

She now takes the bus home instead of to the sitter’s house, so he doesn’t have her random moods interrupting his quiet homework time. In the evening we encourage him to engage in activities that don’t involve them playing together (since that just results in screaming arguments), like reading or playing strategy games on the computer. We spend money on devices and computers so they can entertain themselves without actions and reactions resulting in more hurt feelings and rages. We give him constant positive feedback on the areas that most vex him, we take his interests into account and try to give him as normal (what is normal, anyway?) and fulfilling and fun and educational a childhood as possible. We hope for balance. We take one or the other with us on errands so they can have alone time with both parents—so we can run the errands in something approaching peace—and I’ve taken them, individually, to visit my parents.

It’s not ideal.

But it’s never been, and it never will be: It’s our life, we do our best.

And that’s now.

Tomorrow, many tomorrows from now, my youngest child will be responsible for my oldest child. Because we do not know if she will ever live independently as an adult, nor how we’ll be defining ‘independent’. Because we won’t always be there… and yes, by that I do refer to my eventual death. So not only might my son have to help care for his father and I at the end of our lives, his sister’s welfare will become his responsibility. This will be a heavy conversation to have when he turns 18 or when he graduates from college… and when he thinks he’s found the one, whomever that is must, too, know what the future will hold.

But that’s not now.

Now is quite enough, to be frank.

And now mostly what I hear around my house is, “it’s not fair!”

No, it’s not.

And it never will be.

One Response to “Blogging for Kids with Disabilities (2009)”

  1. Denise Says:

    A definite shout out to the parents and families with disabilities!
    Being a health care worker in an elder care facility, I really admire them. It takes a lot of patience and compassion not only from the families, but from the general public as well. It can be very trying sometimes in dealing with the “every day” routine. There will always be ups and downs, and at times very frustrating. That is why my heart goes out to the families.

    My sister in-law is going through the same kind of challenges with her daughter Michelle. Her older daughter Catherine, who has been living with my mother and I since she was 6 months, is having a tough time in dealing with Michelle. It is very hard and at times frustrating trying to explain to Catherine that it is not her fault when Michelle acts out and does things. Their mother and stepfather are having challenges themselves and Catherine is having a hard time in understanding it. She thinks that they are favoring Michelle over her and at times becomes angry and resentful. We are all making an effort in “keeping the peace” between them.

    I thing it is awesome that there is a website where people can come together and blog about their feelings. My thoughts and prayers go out to all of you.

    God Speed,

    Denise M. Limbert

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