Sunday, February 22, 2009

New year, old issues.

Since the last time I got around to writing- we have a new year, a new President, and hopefully a new outlook. Unless, of course, you're a conservative, in which case you can sit back and point fingers at my continued unemployment. Obviously I got myself into this situation with three kids and need to stop sucking the public teat for that SSI money I'm actually not getting. I did your party line of being a stay at home mom and look where it got me- uneducated at 36 without a husband because he chose to leave. And thanks for the institutionalized child care - oh wait, I'm supposed to be staying at home, who needs childcare, besides welfare moms who need to be off of their asses working- are we seeing the issue here? Of course not if you're living in that rich people fantasy world. When you find me childcare for varied hours (since minimum wage employment demands all sorts of hours) for a thirteen year old who needs assistance with things such as feminine hygiene, and a nine year old boy with severe ADHD and the temperment issues that go along with it, give me a ring. In the meantime I'll keep hoping I can pull a grant out of my ass to go to school and have childcare during that time.

Yes, yes I know I am sounding a wee bit bitter. Reading the news about the corporate bailouts where those poor horrible CEO's might be forced to live on a mere $500,000 for a year just brings tears to my eyes. I swear they can't live in the same world we do.

Thursday, November 13, 2008

Things we hate to think about.

Taylor, my beautiful daughter with DS, is almost thirteen. Without being TMI, she reached menses a year ago. She is most definitely a boy-crazy pre-teen, who comes home telling me about her new "boyfriend" in class each day it seems.

We have a hard enough time with sexuality in this country, particularly for women, without bringing in the issues of mental disability. How much do you attempt to explain, and how? Taylor will stick out her belly and say she is having a baby. The last thing I am inclined to do is give her information on how that really works at this point! I know I will need to, but the hows are still beyond me.

So now, here I am with a twelve year old who is just started taking BCP. It serves two purposes, to regulate cycles and make flow lighter, and, well... let's face it, there are assholes in the world who will take advantage of the loving and giving nature of women with DS and similar developmental disabilities. Nature has played a lovely trick on us, making women with trisomy 21 fertile while men are not. She is supervised, and I hope to Gould that she never is taken advantage of, but the very idea that I have to prepare for something like that happening is horrifying.

Do the people who make out having special needs kids as being a "blessing from god" or whatever bullshit ever think about these kinds of conditions? Do the anti-choicers who want to force women to continue pregancies when a disability like this is known want to try to work this one out? Do they want to face the potential of a woman who will grow up to want intimacy with a special partner someday, yet cannot raise a child, especially one with a 50% chance of having the same disability?

I love my daughter. In every way a mother can. Most people just frankly don't sign on for these kinds of thoughts, and for those who can with a smile and a sense of doing the right thing I commend you. I'll be over here in the nervous breakdown corner, nursing that bit of resentment that will never quite go away.

Thursday, October 30, 2008

Dear Ms. Palin

I think it should be self-evident that blogging is a new experience for me. I'm not sure how many will be interested in my little corner of the web. My inspiration has been the campaign of one Sarah Palin. She makes it sound so easy! I can be Vice President and look here at baby Trig, he's special! I'm pro-life, see?

Sigh. Your reality is a bit easier than the rest of us out here. Lest anyone think I have anything but love for my girl Taylor, who is almost 13 and feisty as all get out- it is for her that I am doing this blog. People like Ms. Palin need to understand what the world is really like for people with special challenges, and for their families. Only then will the support and acceptance truly be out there.

Dear Ms. Palin,

I admire your tenacity and dedication even if I disagree fundamentally with your political views. However, it is remarkably easy to throw out scraps about funding for special education, about sending special needs children to private schools (that generally are not equipped to handle them), about what a joy Trig is.

He's a baby. He eats and sleeps and poops. That's what babies do. He probably is a little "floppy" because of low muscle tone, and needs a bit of help getting a good grip to feed, and making milestones a bit slower than your other children did. He seems fortunate in not having heart issues or other serious health problems. Other than these concerns, he is a baby. Nothing difficult there beyond the challenges all parents face with infants.

Quit using him to further your political aims. It's sickening.

Beyond that, frankly Ms. Palin you haven't a clue to what challenges lie ahead. The education is there in most communities, as long as there are paraeducators, speech and occupational therapists, and others helping alongside attentive parents. Educational materials for developmentally disabled children can be re-used as repetition is an important part of their learning anyway. Throwing money at school-age programs sounds admirable but it is not where the needs truly lie.

What is needed are more resources for new parents. More places for adults with disabilities to live and work- many of the group living homes in this area have waiting lists of three years or more. More child-care assistance for parents of children with special needs, who cannot find affordable care for their circumstances. Respite care and yes, even family therapy.

It's easy to be a "special needs mom" with a healthy infant, money, and lots of support.

Think about it.