Tag: disability

Giving Tuesday

Since it’s Giving Tuesday, I thought I would do a brief summary of some worthwhile organisations for those interested in supporting kids with special needs. These are specific to my own community, but if you’re not from BC there are most certainly similar charities in your community too!

The BC Centre for Ability is an amazing organization that provides therapy and programs for children and adults with disabilities. C gets her therapy there through the government’s early intervention program, but they do much more than that. I’m actually astonished that this organization does not have a higher profile in Vancouver, but if you read through their newsletters you will get a sense of the work they do.

When I think of the Red Cross I often think of their international work, or of those commercials that used to be on when I was a kid where they brought care packages to families whose houses had burned down. One of the things they do in BC is provide medical equipment which might otherwise be unattainable. For example, they have an equipment program which provides equipment for seniors who need it to live independently. They also provide equipment like walkers and seating for qualifying disabled children. You guys would be astounded at how much this equipment can cost, especially as children outgrow it! So these types of programs are incredibly important.

The CKNW Orphan’s Fund is a charity I learned about just recently. They provide grants to both organizations and directly to families. We are lucky and have pretty good insurance, but for families who do not costs of things like orthotics, speech therapy and so on can be out of reach. Other things, like converting your car so you can put your child’s wheelchair in it, are not covered by insurance. The Orphan’s Fund makes this achievable for low-income families.

Last but definitely not least, BC Women’s Hospital. BC Children’s is a great place and gets lots of press, but BC Women’s is so incredibly important as well. They care for the tiniest and sickest newborns. Also, think about what a difference it makes if a woman with HIV, or who is heroin-addicted, gets appropriate care. For the child she is carrying it can make a huge difference in their quality of life – and they have their whole lives ahead of them.

Advice for Myself

I always see these posts on blogs about “Things not to say to people who’ve had miscarriages” or “Things you didn’t know about special needs parents.”  And it’s so tempting, after hearing “Wow, you’ve got your hands full!” for the hundredth time, to catalogue the silly but well-meaning things people say to you when you have a child with special needs.  But then I realized that I really can’t make the woman on the airplane, or my husband’s great-uncle, or the therapist at the assessment centre read this article, so any advice for them just ends up being blown away in the wind.  Instead, I offer advice to myself.

Develop a thick skin.  That’s it.  Because people will keep making insensitive comments, and sometimes I will feel like educating them, and sometimes I will feel like ignoring them, and sometimes I feel rage.  But no matter what I feel, they’ll keep coming, so I must just stop letting them bother me (too much.)

Part of this is easy for me, because I do think I can recognize that most comments, even mildly upsetting ones, are well-meaning.  People will say things like “She looks fine!” or “My cousin was told he might have CP and he’s fine!”  People will draw analogies between my situation and totally unrelated ones, such as “Well my sister’s daughter was born with a  slight cleft lip, and she’s fine!”

Or sometimes people will make comments that make things sound much worse than they are.  When P matter-of-factly told the animator at the air and space museum that his sister couldn’t reach as easily because of her “brain injury”, I saw a look of horror cross his face.  I don’t want anyone to feel sorry for us.  Feeling sorry for myself from time to time is okay, but having someone else feel sorry for me is something else indeed.

The thick skin is also needed in dealing with medical professionals.  Sometimes it’s because  I’m asked, once again, to recount events that are very traumatic for me.  Sometimes it’s because someone says something insensitive about her prognosis.  Once an ultrasound tech told me that seeing my girl’s scan had ruined her day.  It was well-meaning, I think, as in she was saying she felt sad about it.  But seriously?

Another time, a person who was assessing my daughter started out our session by pointing out several deficiencies, which was upsetting because we’d worked for weeks just to get her to that point.  It annoyed me, but after fuming for a little while, I just let it roll off me.  Awhile ago, I got a report on C  and when I read it, she sounded so much worse than she is.  A report that said your nearly one-year old daughter is functioning at a level far below her adjusted age could have been pretty devastating, but by then my skin was already getting a bit tougher.  So I thought about it, and then dismissed it.  She has a physical disability and some of the markers that apply to other children can’t fairly be applied to her.  I can’t take it personally, or worry about it too much, because if I do that every time I see something like, I will be permanently tied in knots.

I have some more advice for myself on other matters, but I think that’s enough for tonight.

2014 Socks

It feels a little silly sometimes to have a post about my feelings about my child’s disability, and then in the next post to be all “Lalala, I love socks!” But I think that’s what I was meant about life being a bit absurd. That’s just the funny thing about parenting – one minute you’re crying with a specialist and discussing your daughters’ delays and necessary therapies. The next you’re laughing your head off at your son’s kindergarten artwork, or wishing desperately they’d go to sleep so you can take a break and surf the ‘Net for handbags.

Socks

So yes, more socks. My first pair of 2014, which means I’m a little behind on my 12 pairs in 12 months schedule. But these have a generous cuff, and I’m planning a few ankle socks so hopefully there is still time to catch up. It’s the Churchmouse Basic Sock pattern. One problem I have with sock patterns is they’re often too wide for my feet, even when I knit tighter than the gauge suggests. I think I’ll reduce the overall number of stitches next time. My feet are pretty normal width too, maybe even on the wider side. Hasn’t stopped me from wearing them nearly daily though. The yarn contains cashmere, so they’re deliciously squishy under boots. The yarn was an impulse buy at Knit City, but the seller also sells on Etsy.