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Friday, April 7, 2017

All Are Welcome---except, of course, when they aren't

As I made a depressing round of calls this week to try to find a source of outside of school speech therapy for Janey, as I once again looked at summer camp opportunities and realized that the Extended School Year program at the public schools was really her only option, as I thought about how restless Janey is on the weekends, I did some thought exercises.  How would we feel, in today's society, to think that activities, programs, lessons, camps, enrichment opportunities, all those things that are "open to everyone" are in fact closed to one small group of people?  How would we feel knowing that we exclude with polite speech and "of course you understand" and "we aren't equipped to deal with that sort of needs" and "we staff for children who can be in a 4 child to one adult ratio" and "we generally deal with younger children with more potential to someday return to regular classrooms (an actual quote)" and "we'd be happy to help you if you could hire a one on one aide to accompany your child" and many, many other such ways to say NO---we don't include your child?  If this were done on the basis of sex or religion or race or nationality, we'd be outraged.  But because the child in question, the children in question, are autistic, labeled as "low functioning", not "able to follow directions"---well, that's just life.

And the thing of it is, I usually accept it as just life.  I am not a fighter.  I was not especially chosen to fight this autism fight.  I accept reality.  I say "of course I understand".

And the other thing of it is, I don't want Janey where she isn't wanted.  She is so sensitive to tone of voice, to the mood of a room, that she often bursts into tears at tense moments occurring on such TV shows as "Daniel Tiger's Neighborhood" or "Clifford" or "Yo Gabba Gabba".  These are shows aimed at toddlers and preschoolers.  If Daniel's mother is annoyed at Daniel, or Clifford upsets Emily Elizabeth, or the Gabba folk have a misunderstanding, Janey will scream and cry and pound the TV.  So how would she do at a program or camp or activity that just plain doesn't want her there?  How would THEY deal with her toileting accidents, or arm biting, or such?  Would she be yelled at, or worse?

Although I might not like it, I can understand why Janey might not be able to attend some things.  In an ideal world, she should be able to go to anyplace "open to all".  But she can't.  But I cannot accept that after making all kinds of calls,having two kinds of insurance for her, being willing to pay,  there isn't even a place that will provide her with speech therapy, or a social skills group.  I can't accept that she can't attend the city's rec department summer program FOR KIDS WITH SPECIAL NEEDS.  I still can manage to get upset that she had to leave the inclusion school we loved.  I hate it that the only respite we are referred to, over and over and over, is a program we tried, where we personally witnessed a staff of two, one working on checking in children, supposedly supervising approximately 15 kids with severe special needs---a program held up as "the best"---one that now does officially say they can't deal with kids that need one on one attention.

I'm feeling angry today.  And I will calm down.  I'll go back to understanding that "everyone included" doesn't mean that.  I'll go back to realizing Janey is a special case.  I already do realize, very much, that we are incredibly lucky she is welcomed and loved and embraced by the public school she attends---that I can put her on the bus each morning knowing she is cared for all day, and there is a summer program for her that does the same.  But in this city, this country, this place with the money to wage wars and send people into space and provide young sports players with equipment and travel, the city that gave my sons so many incredible opportunities, there is so little for those among us with the most needs.

6 comments:

Rachel Davis said...

Thankyou for voicing what many of us feel. I too have a 12 yr old low functioning autistic child. She is rejected at most special needs places because she isn't able to use the restroom unsupervised. They are more than willing to allow aspie kids and high functioning autistic kids join their camps and social groups , but not my Emily. We are left out of the fun. We don't fit the acceptable kind of special needs. Kinda sucks. But I will not let it diminish her life. She has value. Even if i am the only one that sees it.

bikermom3 said...

Someone we know from a local church contacted us about my son going to something called Buddy Breaks. They have it once a month but not in summer. But they try to make the child be king for a day and provide one on one attention for whatever the child wants to do. Like if my son just wants to turn lights on and off they make a game of it. They do have to do some sort of training to be able to have this. my son loves going, maybe something to see if they have in your area. Good luck.

Suzanne said...

That sounds like a great program! None in New England, though...I found a link to it...

http://www.nathanielshope.org/events-programs/buddy-break/locations-and-dates/

Laurie said...

I have just been dealing with this myself. It is getting near impossible to find outside programs for my daughter, 14 and low functioning. I had quite an angry and hopeless morning researching summer programs and camps. There is one that looks good that I had not seen before but then I get anxious that it won't be as "inclusive" as they make it sound. She has physical limitations as well that compound the problem. Lots of programs have pictures of kids in wheelchairs but upon further study, they really aren't equipt to handle such situations even if I were to stay and be with her the whole time. I understand, I really do, but does not make it less frustrating. She loves adventure, activity, etc. but needs a lot of help and weighing in at 115 lbs, if she is having a stubborn day good luck! I get so depressed thinking of how much we used to do with her before puberty. Everything and she loved it! Now, it is so laborious that even her interest has depleted. Seeing things that gave her so much joy now irritate her is the worst kind of pain to witness. Sorry, having an angry rant kind of day myself! Interesting you say you are not a fighter, I feel the same way but then everyone begs to differ. That makes me feel better but it takes a lot out of me to demand things and that seems to be the norm now. So when I embark on something like this, my stomach gets a huge knot knowing that a fight is coming. Not a nasty fight with someone in particular, just the effort it will take to reach the desired outcome. I don't know if this makes sense, I suspect it does. Love your posts! ALways

Suzanne said...

Laurie, I understand exactly what you are saying! People say too that I am a fighter, and I'm not, in any way, and it's just like you said---if I know something is going to be a fight, I feel sick. I dread it. And it's like you said---not a nasty fight, even just an effort to get what is needed, even just mild insisting. I do it if I have to. I think what I can be is determined, but not a fighter or warrior or any of those traits I feel like I'm "supposed" to have. Angry and hopeless is exactly how I feel after looking for programs. Angry because if Janey were 99% of kids, there would be literally thousands of options in our area, and hopeless because I don't feel up to doing what needs to be done to find even one option that works. If you aren't on the Facebook group, I hope you join---I'd love to talk to you more! Thanks for your kind words!

Laurie said...

I am on your fb group and I love it. I haven't posted anything yet but have gotten so much out of it! Thanks for your response. It can be defeating when there are countless programs for high functioning and I feel exactly the same that no one is like Nyla. I would not say that if that wasn't my experience, also why I was so glad to come across your blog! I have thought probably at least once a day for 14 years that she is in our family for a reason and I know a big one is to push me and get me to build and strengthen those traits that are not natural, like making a fuss or "fighting". But in a good way :) Have come a long way indeed but still a struggle and have to remember who I'm fighting for. It isn't about me and how comfortable I am.