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Tuesday, January 15, 2013

My fantasy wish list

Janey seems to be over whatever was happening this weekend, the horrendous crying spell.  We are recovering---Tony and I, and the boys, and most of all Janey.  But it's left me thinking about our lives a lot, and especially---what would help?  What would make it easier to be Janey, and to parent Janey, and to be a sibling to Janey?  I had some ideas.  These are not ideas anyone can make come true.  They are more like fantasy ideas, but I wish they weren't.

The biggest idea, the biggest truly helpful thing---a drop-in center for respite.  That is what I daydream about.  I've written about it in the past (here).  I dream of a center staffed with trained autism professionals, along with paraprofessionals and volunteers (many high schools now require volunteer hours, and this would be a great job for people interested in a career in special needs).  You could pre-register there, and get assigned a certain number of hours, and be able to bring your child in with very minimal notice.  This would in so many ways be more helpful than in home respite care.  That's because what we crave most is a chance to just relax at home, maybe watch TV or a movie or cook or talk with the boys or even have a few minutes of adult time.  We don't want to clean the house and pay for dinner out, which having in home respite would require.  In fact, we do have in home respite---the boys.  If they are available and we have money to pay them, they can always watch Janey, but it's too expensive for us to go out often, and it's not what we need.  We need some time as a family to regroup from the incredibly tough job of parenting Janey.  And she would benefit greatly from a change of scenery at times too.  I picture a place with a sensory room, a fenced safe outdoor play area, autism friendly toys---not a place for learning or drilling or school, just a recreation place that the kids with autism would love and their parents would love even more.

Another thing that would be helpful---a time machine.  I wish for this because I feel like right now, we are in the infancy of understanding autism.  The epidemic, if there is one, has just started in the past 10 years or so. We are at the stage I imagine is like the early stages of any new illness on the scene.  People are desperate, people all have theories, and everyone is well meaning, but no-one completely knows the best practices to follow.  No matter what you do, there is something else you aren't doing, and you always wonder if that other thing is what you SHOULD be doing.  I wish I could go forward 50 years, just for a day or so, and see what has been learned about autism.  What treatments have stood the test of time?  Then I could come back and go forward confidently with what I've learned. Or maybe I'll learn nothing has shown to help.  Then I could just relax and concentrate on giving Janey the best life I can with what we already have.

The next wish is one that is similar to almost anyone's wishes---unlimited money!  I wish I had enough money for a new house, one with a room that could be made into Janey's own sensory room, one with a big backyard, totally fenced, so Janey could run around all she wanted, one with an indoor pool (I'm dreaming big here!).  I wish I could take those great catalogs full of autism friend supplies that are hugely overpriced, and just order anything that caught my eye.  I wish I had money to fly all the mothers I've met here for a long weekend in a luxury hotel, where we could laugh and eat fancy food and drink fancy drinks and regroup and relax.  I wish I would not have to worry about every cent, or our lousy health plan.  I wish I could buy Janey anything that might help her without ever thinking twice.

My last fantasy wish---mind reading.  I wish more than anything I could go inside Janey's mind, and see what it was like.  I wish I could know what she is feeling when she cries all day, or when she manically repeats lines from videos, or when she obsesses over certain foods, or when she loves a piece of music, or hates it.  I wish I knew how her perception of the world is different than mine, and how I could modify her surrounds to work with that.  I wish I knew how much she understands of what she hears.  I wish I could be her, just for a little while, so I could be a better mother to her.

There are so many things I don't have to wish for, because I already have them---a great school for Janey, a wonderful husband and siblings for her, her good health---all of that.  I know I am lucky in so many ways.  But for Janey, I still have so much I wish for.

7 comments:

Sophie's Trains said...

Your wish list is very similar to mine. Maybe not for respite because Sophie is still a baby in my eyes, I couldn't possibly leave her anywhere. But the other stuff? Yes, yes and yes! A crystal ball for her future would be nice too...

mknecht24 said...

Ditto!

I'm going to start a blog and just post links to yours! ha ha ha

Tea Mommy said...

Oh Suzanne, you made me cry. I think about these things all the time. It's so painful to think that having more money could help our children's wellbeing. Yes, you mentioned a lot of people want more money, the difference is for us (and I mean all of us on here and so many others) that it's for our children's health & wellbeing, not for a BMW. This week was an awful week fighting with the insurance company and getting the run around from Willow's therapists & the insurance company. At one point I just broke down crying on the phone. Poor guy didn't know what to do. It's been a crying week for Janey & a crying week for Tea Mommy too. xoxo

Amber said...

Hello . . . I haven't posted here before, but wanted to say that I don't think your wish for drop-in respite care is such a total fantasy. I went to college in Williamsburg, VA, and volunteered at a drop-in respite care center there. It was in a small converted house and had two full-time staff, I think, and several volunteers. The people that came for respite ranged in ages from about 15 to 75, I think. Maybe there are more of these types of places out there?

Suzanne said...

That is great to hear, Amber! I've heard of drop-in respite in England, but never in the US. I should look more to see if one exists for anyone Janey's age. If Janey didn't take every ounce of my energy, that is something I'd try to start. When I win the lottery... Tea Mommy---I feel for you so much. It's horrible dealing with paying for things that Janey needs so much. It took us a year and half to pay for her initial evaluation, which was only partly covered by insurance, and although the people at the center that did that were very patient, every time they called, I cried. I felt like---what I am supposed to do? It would have been wrong not to get Janey the evaluation, but I feel like it's wrong to not be able to pay for things I get. I am very lucky to have been given some huge kindnesses by Janey's school and others in helping me out. But I wish I was the one that could help other people, after helping Janey! Michelle, I wish you'd start a blog for real! I would like to read it! @ Sophie's Trains---I felt the same about Janey as you do about Sophie when she was little. It was hard to leave her even at the half day of school she went to. Now, I have to admit, I'd be ready for her to go to something like a week of camp! I'd miss her, but it might be good for both of us. Or me, anyway...

Becca said...

Suzanne, have you thought of monetizing your blog? I don't know how much traffic you get but I found you after you were mentioned on a fairly large forum so maybe it would be enough to help?

Suzanne said...

I've thought of it, Becca, but years ago not really getting what I was doing, I applied to Google Adsense and then didn't do anything with it, and lost all the information. Then a few years later I tried to do it over, and it came back I already had an account and was trying somehow to get a second account, so they blocked me! But it's probably just as well. I worry about ads going on the page that don't reflect what I feel, and I'm not much good at making the blog look like others I've seen that make money! Although it certainly would be great having some extra money...