Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Thursday, January 11, 2007

Questions Without Answers

I’ve been dropping Sandis off at school at 7:15 in the morning for the past few weeks. Doing this gets me into work ½ hour earlier than normal and that means 2-1/2 hours extra at my job per week. It is worth it. This morning, still dark at 7:15, I watched my son saunter on up to the school’s front doors. For whatever reason I fought tears. It is hard to explain why I was sad, am sad, but I am.

Yesterday I talked to Sandis’s teacher and she explained how Sandis has been struggling more at school since coming back from Christmas break. He isn’t struggling academically so much as struggling to stay involved with the class and interact with others in appropriate ways. She mentioned things like excessive spinning, more aggression, and several tantrums/meltdowns per day. I talk to his teacher often. This is only his second week back. Things aren’t getting better.

Since Sandis was diagnosed October 19th I have had the opportunity to learn so much about autism and what I can do differently to help him make it in my home and during family activities. In so many ways we are at the cusp of great breakthroughs at home. We have also achieved great things in these two months. We have begun using visual schedules often, and have taken a frustrating morning routine and made it manageable. This is huge as our mornings often resulted in three people in tears screaming. Yes, that three includes me. I’ve taken steps to address Sandis’s sensory issues by starting up occupational therapy, doing different things around the house intended to ease his auditory discomfort, and back-scratching as my second job to help calm him. I have stopped being annoyed excessively by what I now recognize as stimming, and I’ve tried to teach him more appropriate ways to accomplish whatever it is he is trying to accomplish by stimming. And we have had huge successes. There is a lot still to work on, but we have had huge successes.

The school has known about Sandis’s diagnosis almost as long as me. There have been no changes. They are in evaluation stages for the IEP. Things are getting worse. Sandis is having problems with aggressive behavior, and damnit if you knew my son you would know that things are bad if he is kicking, hitting, spitting, or pushing. He is overwhelmed and underserved. I know that his IEP when it starts will address these issues, but the waiting is just serving to piss me off.

I asked Sandis’s teacher point-blank yesterday what Sandis needed to succeed in her classroom. Her answer (off the record she says, of course, my luck): “He needs a para-educator all day. Not so much does he need the para-educator to complete my class, but to succeed he does, and to succed in first grade he will. If he does not start first grade with a para he can and will not succeed in first grade. I do not want him to start first grade without a full time aide”

Point blank. My son, a para-educator, help all the time. All day. Every Day.

Previous recommendations from Sandis’s teacher was perhaps an aide only in the afternoons. She has changed her stance, and I will push for what she said, even if she will not say it out loud at an IEP meeting (but why not? School politics?)

It makes me sad to think that my son can not do this on his own. It pushes that word disability a little more forward in my thoughts. I don’t think of Sandis as disabled, but in the school environment he really is and he needs accommodations.

Perhaps this is grief? Grief that he cannot do this alone and things are different from what I ever imagined and so different from what I had hoped? Grief over my son’s struggles?

When I think about this, my mind goes glare white, and there is pain from temple to temple. I am trying to stop tears, I am trying to stop fears. They will not go. I can’t pretend. This is real. Stop.

How is it possible to love this little child so much? How is it possible to break a little with every hurt he encounters? How is this depth of feeling and sorrow possible?

For all of this grief, there is of course my infinite love for my son countering it. My only hope is that others will see him and experience him for all of his joys as I experience him. Is that a reasonable hope?


Lyrehca said...

This is a heartbreaking post, but you're just at the beginning stages of learning how to help Sandis and how to deal with his condition. You sound like you know what you need and have the grit to fight hard for it. Sandis (and your daughter) are lucky to have you as a mom--you're dealing with a lot, and it's understandable to be overwhelmed by it... but I think it will get easier for all of you. Good luck.

Minnesota Nice said...

I agree with Lyrehca. Life can present us with a string of difficult situations, but there is always hope for better days ahead. I will keep you in my thoughts............and, stay warm - my nose was frozen at the bus stop this morning!

Amberthyme said...

Let yourself be mad & sad -- don't stuff it! You have taken so many big steps in such a short period of time and it's O.K. to feel overwhelmed! I haven't even been brave enough to try for SSI yet.

I don't know if it's political (maybe district or even state politics?) but Therin's teachers haven't been able to give advice 'on the record' or even speak up about their recommendations in the IEP meetings but from others I hear that it's all about the money and if the teacher makes a recommendation then the district has to follow through? I am not sure exactly how it works but I think they are told by superiors that they are not to give official extremely well informed opinions even though they have the most contact with the kids who need help.

In so many ways Brenna's diabetes is so much easier. She got diagnosed and there is very little argument on how her treatment should proceede. Diagnosis = action! But with Therin's & Sandis's autism it's not so clear cut. Each doctor interprets the diagnosis criteria differently - to GET diagnosed it's often a long drawn out wait and then the school has to have all these observers to be sure what kinds of interventions the child needs. After diagnosis you figure there will be action but there is yet more debate! They have to document beyond a shadow of a doubt that the money that they are spending is necessary and minimally restrictive (well, at least in California, I know each state is different). Meanwhile while you wait and try and be pleasent with these people while inside you scream "why can't my son have the help he needs NOW!" It's O.K. to feel this way and I'm really glad that you are venting here.

OK depressing stuff out of the way -- Sandis is an amazing kid and transitions are hard for him but once he readjusts to the classroom schedule he may start doing better on his own. It could happen next week or in 3 more weeks he will work back into school demands on his own timetable-- schools have a difficult time dealing with that. It doesn't mean he doesn't need help (I made that mistake 2 years in a row -not this year!) He will be OK and once the interventions start you'll have a better idea whether he needs an aide half day or all day. It is a slow and frustrating process but you will make it and so will Sandis.

Wow, that was long. If my comment was to depressing just delete it, o.k. Get a big hug from someone you know and it'll be better soon.

Molly said...

Definitely a reasonable hope.

Oh, the school thing. It's hard.
It's all about the $$ and the allocation of given resources. Each school gets a certain amount of special ed teacher and para time. It isn't allocated based on what's good for kids. Just based on stupid formulas. We, as special ed teachers, are forced to spread thin resources in awkward ways to "cover" all kids.

All I can say is keep being a squeaky wheel. Contact the special ed. director in your district and keep asking for what you think is best. That's who has ultimate power.

Hang in there.

Sasha said...

Answers will come. And hope is always reasonable. You can never stop hoping. "hope dies the last" they say in my culture.

I have the deepest respect for you and for the fight you are fighting. My thoughts are with you. I wish you all the best. Your children are very lucky to have you.