Wednesday, 26 June 2013

Marching for Special Needs support, grrr

Raising a child with special needs is a political act. I like politics generally, although the past few years  my insatiable appetite for news has found me switching the radio to the classical station and reacquainting myself with old CDs, this week I am loving Joan Baez's Play Me Backwards. For the first time in my life I am disgusted with politicians on both sides of the Atlantic. I used to think highly of quite a few politicians. Imagine that.

We joined a nationwide march in support of Special Needs Assistants. We marched from the cathedral to Eyre square. Lily carried a small sign: Support me now so I can support myself soon. A long legged photographer from the Irish Independent took a few photographs of her and a reporter interviewed her. Yes, Lily said, I need some help at school. Yes, I would like to go to University. When I grow up I would like to be a poetry, like my Mom.

She already is poetry.

And I am still fuming. I can only think of two places where parents of children with special needs don't have to fight, constantly, for simple things. Sweden and New Zealand. |Or so I've read, I hope it is true.

The march was sweet. Too damned sweet. It was appropriately solemn. Galway was dead quiet at 6 p.m., bad timing for a march. There was no loudmouthed politician, priest, poet to rouse the small crowd. Most of young children with Down syndrome don't like loud noise, so that may have been okay. No visible outrage except for the steam coming out of my ears.

 Lily was the oldest Trisomy 21 protester. I think she will be okay, she has determination, an interest in many things, loves books and has a pissed off Mom. My heart was breaking for the younger ones. Baby Patrick in his buggy sucking his dummy the way Maggie Simpson does. Another little man in a buggy with a feeding tube. Our gorgeous 3rd class neighbor who looked smashing in her Ballinderreen National School uniform and stylish glasses. If these children get proper educational support, and I mean support that challenges and pushes as well as loves--they will grow to be independent adults able to work and live in any community.

Solemnity drove home with us until I yelled at Lily for picking her nose. Use the *xx@£ tissue. The finger mined deeper. Don't yell at me, she said. I'm fragile.

Don't play me backwards. Give me a tissue too. Supposedly the bill to cut SNA's hours was reversed yesterday, but the march went on because us parents trust this government about as much as a polar bear trusts the wacky heatwave currently, and unnaturally, baking Alaska.

1 comment:

  1. Keep fighting the good fight, Mary. Lily is as strong as her Mom; I wish everything for her.