The Sense of Humor Pill
I wrote a few days ago about a new study about how parenting disabled children can become less taxing over time. This has been our experience in many ways over the years with Charlie, though he has yet to have any really serious medical issues (he has certainly had some very serious behaviors problems). Today’s Guardian about the “financial ruin, stress and exhaustion”—about the difficulties faced by carers of adult disabled children and relatives, especially as they (and the carers) grow older. One thing that keeps me going is mentioned at the end of a quote from Henrietta Spink, whose two sons, 20-year-old Henry and 16-year-old Freddie (who has “profound autism”), are both “profoundly disabled”:
‘Families and friends do fade away when you have a disabled child. Most relatives will offer a bit of babysitting when children are small, but ours are in permanent babyhood and people do run a mile. It saddens me and it’s a lonely state of affairs. But my unforgiving anger is reserved for local authorities, for the government, for countless MPs and officials who will not face up to the fact that families like ours are being driven into the ground. Assessment after assessment after assessment, they cost thousands of pounds. It’s not joined-up thinking, ever, and people are totally in the dark about where to turn.
‘Its soul-destroying. A lot of kids go into care for the lack of that little bit of extra support. We were first offered help when Henry was five and Freddie two. We were exhausted by that point and beside ourselves that we might get some help. They came and assessed us and assessed us again and finally came back and said we could have eight hours’ help with laundry - at that point we were, as we are now, doing six loads of washing a day. I was delighted. Until it dawned they meant eight hours a year. Quickly you learn that with a disabled child you have to take a pill that says sense of humour on it, because it’s a complete joke.’
Yeah, I guess that’s a pill I’ve swallowed.
And I believe it’s made me stronger.
Tags: asd, asperger, autism, autism blog, carer, disabilities blog, disability, Family, family blog, Health, Money, Parenting, pdd-nos
3 opinions for The Sense of Humor Pill
Karen
Sep 14, 2008 at 6:23 pm
Even sadder to me than the lack of services for this family (I expect that) is the fact that the mother says that she feels abandoned by her friends due to her sons’ disability. My son is only 7 but I cannot imagine my close circle leaving us, EVER. It isn’t always easy and I do have to educate and re-educate some of the older members of my family at times, but everybody loves Pete and accepts him and accepts me and my two sons as a family. Maybe I’m just lucky. I hope my situation is not unique.
I think besides keeping one’s sense of humor, it’s also been really important (and somehow very easy) for me to not have people in our lives who do not care to try to understand what we as a family and Pete as an individual might be going through. In a way, advocating for my son has been incredibly empowering to me and I hope that in time Pete feels empowered as well. Thankfully, right now, he’s just a happy 7 year old with great self-esteem.
sharon
Sep 15, 2008 at 7:18 am
I have friends to be more faithful and helpful than family who always seems to busy with their own lives.
And the hoops you have to jumps through to get government services is ridiculous. They patronize and demean and you feel like crap when it’s all said and done.
Kristina Chew, PhD
Sep 15, 2008 at 8:50 am
And for minimal results……
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