Tuesday, April 5, 2011

We Regret to Inform You...

We just got some disappointing news in the mail. We applied for Zoe to attend an Integrated Therapy Program for school this fall. Zoe will be in Kindergarten and this school has Junior, Senior Kindergarten and first grade. It was a very time consuming and frustrating all along and we had an idea that they may not accept Zoe since all along they were saying things like "Zoe has too many needs. Zoe is non-verbal. etc" They even started saying Zoe's vision impairment was too great. We felt like they kept finding excuses for not accepting her. But we still hoped this would work out because they have so many resources at their centre and we know Zoe would really benefit from the program.

So today's letter states, "We regret to inform you that Zoe does not have a place with our program."

And that got me thinking about all of the times we have heard these regretful statements since Zoe was born. And how frustrating that is as parents. I just can't see how anyone can look at Zoe and not see her potential. It's there- I know it is. It just takes a lot of work to bring it out. And I guess they are looking for easier kids that they can check off as making significant gains as the year goes on.

Significant gains...that is another regretful statement we have heard recently:

"We regret to inform you that Zoe is not making significant enough gross motor gains to qualify for physiotherapy at this time." So what- she is too disabled for therapy? What kinds of kids do you want then?

So many regretful statements...

"We regret to inform you that your beautiful baby we just whisked off to the NICU without you even getting a chance to hold her has some sort of serious problem."

"We regret to inform you that your perfect two week old is missing a part of her chromosome and will probably never walk, talk, sit on her own, smile, respond to you, eat on her own, etc."

"We regret to inform you that we must file AMA (against medical advice) in your child's chart because you are refusing to put in a gtube when she is only 2 1/2 weeks old and we haven't even given her a chance to show us she can eat."

"We regret to inform you that this restaurant does not have a supportive highchair so you must carry yours everywhere you go."

"We regret to inform you that this building is not accessible which means lugging your child and all her equipment up and down stairs. Oh and by the way, it also means that she may not have anywhere to walk around. But that is ok, just stick her in her chair where she belongs."

"We regret to inform you that our recreation facility no longer has disability pass rates which means your family can no longer afford to swim and play here. And yes, regretfully we are still the only fully accessible facility near you."

"We regret to inform you that yet again this restaurant, museum, airport, etc does not have adequate change tables which means you get to change your daughter on the floor."

"We regret to inform you that we want your child to start using augmentative communication but we have no intention of working with you or helping you with that process. Good luck on your own."

"We regret to inform you that your insurance does not cover this drug, this piece of equipment, etc."

"We regret to inform you that your child is too able bodied to qualify for respite at our facility."

"We regret to inform you that your child is not able bodied enough to qualify for our program."

On and on the negative statements come at us. And in my mind I constantly compose my response:

"I DO NOT regret to tell you that my daughter is an amazing and wonderful person who has already made gains and reached goals you told us she would never reach. AND she is only FOUR!"

4 comments:

Candle Ends said...

That's frustrating. They write them off without a second thought.

When Irina tried to get Misha into the autistic pre-school, they evaluated him but said, "He already has a diagnosis that's not autism, our program doesn't apply." She went the rounds with them, but they finally re-evaluated him and acquiesced. The local school district psychiatrist even gave him an official diagnosis of autistic spectrum.

I am probably preaching to the choir, but maybe you should put up a fuss. The squeaky mouse gets the cheese and all that.

Teri said...

I'm sorry for all you're going through. I can only imagine the frustration that you feel each day when you have these constant hurdles to leap over. Keep on fighting for her, Genevieve and Gavin. You know her potential, and as maddening as it is, you'll have to prove it to the world since the world is too ignorant to look and find it on it's own.

Genevieve Ross said...

Yes- it is very frustrating. Especially since this was the program recommended by Zoe's therapists! Gavin sent off a very appropriately worded (he is better at those things than I am) email which stated our disappointment and highlighted their insensitivity at having the slogan "A world of possibilities...learning for all" on their rejection letter.

So many hurdles, but we just have to take them one at a time. Right now it seems like there are quite a few in our path but that just makes us all the more determined :)

Thanks for your comments,
Genevieve

moplans said...

I love this!
Julia has the same issue and is either too disabled or not disabled enough. So who the heck is getting into these programs????