Any special needs parent will tell you that they went through a period of grieving and denial. Even if they knew “something” was going on, they didn’t always accept it. Acceptance comes in waves. Sometimes you fight against it, and sometimes you go with the flow. Acceptance doesn’t mean enjoying the disability, or being happy that my child is disabled. It means I’m no longer pushing angrily against it. I fight FOR my child; not AGAINST her disability. It is what it is, and until there’s a cure, it’s here to stay. There’s no use wasting my time and energy in a fight against something that isn’t going away.
And perhaps it’s hard to describe. Parents of typical kids, with no special needs or disabilities, may find it hard to understand. I can be angry with the disability–I can want better for my child, and mourn the losses we experience–while still accepting it and even embracing it.
Embracing the disability means accepting it in a way that is helpful to my child. Instead of “getting by” with as little as possible, I will make use of every resource available to make life more livable for us.
It means… giving her Zyrtec when I would normally just let allergies run their course–maybe treating the symptoms homeopathically, or helping it along with raw honey, but nothing so aggressive as actual allergy medication. But when I see her so very frustrated at her sinus headache, rubbing her nose (and thus wiping snot all over her face), and generally irritated at the whole thing, I’m willing to give allergy medicine a try.
It means… preparing myself for the possibility of her someday needing a feeding tube. We are so very grateful that at this point, she can still swallow food without choking, she’s still in a normal BMI range, and she’s generally healthy. But we also know that the time may come when those things could decline, and we might need to consider a feeding tube. And I’m willing to go that route. I’m not going to stubbornly wait until she’s dangerously malnourished, or until feeding her solid foods is dangerous (if she chokes), or until it’s our absolute last resort. I won’t waste time in denying that reality. I’ll be ready for it.
It means… getting a disabled permit. Yes, she still walks. But she gets fatigued and will sit/lay down in the middle of a parking lot if she doesn’t want to walk anymore. And if she does have plenty of energy, she will dart. We have a special needs stroller, now, and it takes some room to set it up and get her in. All of those things make being in a “normal” parking space a little extra hard. So for safety’s sake, we got the permit. Already it has been worth it. We could have fought against it, making do in the regular spaces, staying in denial and waiting until she’s no longer walking (if that does happen–it’s an unknown). But we’re embracing it, and we’re using whatever we can to make life with Rett just a little bit easier.
It means… spending a couple of hours sorting through apps and games on her new tablet to find the ones that would be easiest for her to use, would encourage hand-eye coordination, and would–hopefully–help to establish some kind of communication. It means finding a way to make learning more enjoyable, and communication more accessible. Understanding her needs and interests, and using that knowledge to enhance her day-to-day experiences. Knowing her limitations and finding ways to work around them, rather than trying to push her into using something that isn’t realistic for her. In speech therapy, we aren’t trying to get her to talk; we’re trying to find the right alternative communication device or app. We haven’t “given up”; we’re just recognizing what she can and can’t do.
We embrace her disability, but that doesn’t mean we think it’s wonderful. We just know that life will be much easier–for her and for us–if we accept it and make those little adjustments as we go. Special needs parenting is never easy, but there are ways to make life more livable. If we can focus on what we can do, and take advantage of every resource available to us, that life will include more achievement, richness, and joy.