I've had a few opportunities to talk with the parents of older children (high school age) with Down syndrome over the last couple of years, and I am invariably frustrated by the conversations when the topic invariably comes around to school.
It often seems that the parents have given up (please forgive me, and correct me, if I'm wrong about this!), aren't fighting as hard as I feel they should, to get their child the best in education and services that they could. They give off an air of being somewhat jaded, for lack of a better word. Like they'd been the idealistic parents, at one time, that I and my peers are now, but had grown weary of the fight. You'll see, they say. I don't want to see. I don't want to be those parents. I will never give up. I don't want every day to be a battle, but I also don't want to ever feel that I am not in control of my daughter's education plan. Yes, I know there will be those situations in which we'll be told "can't," but the idealist in me still plans on hearing "won't" which holds so much more hope and possibility. Like appealing to the right person in the right way will show them that our idea is better.
I know I'm being vague, but it's one of those things that causes so much uneasiness in me and I just wanted to get it out there. I guess I'm mainly referring to the type of classroom environment offered, and the abilities of the already over-worked teachers to educate our children. The availability of aides in the class, the number of pull-outs. Here I am, already obsessing about Kindergarten, like it's the be-all and end-all for the rest of Samantha's school career. And now I add my fears about high school into the mix.
If you are a parent of a high school aged child with a disability (and even if your child is younger!) please comment and tell me that I'm wrong, that I just happened to be talking to the wrong people, that you're not all giving up. Tell me how you get what's best for your child, how you know when to back down and how you know when to push.
12 comments:
Oh, I don't think EVERY parent of an older child with DS has given up. On the contrary many of them are right there in the fray. What annoys me is that condescending, pat-on-the-head thing they do: you'll see, you sweet young idealistic parent, you! I think there is always room for growth and change and maybe you won't be exactly the same parent 10 years from now that you are now but gee whiz older parents should just let you live your own life not the lives they wish they had.
Great post. I'm nervous too. Will check back for comments.
---Jen
Ugh, school! I honestly don't worry about milestones and delays, but school totally freaks me out. I worry about the quality of education (we live in a rural area) and I worry about how the kids will treat her. I'm also worried that I will have to fight every step of the way, and it makes me tired just thinking about it. But, if needed, fight I will!
I think you are just talking to the wrong parents. Honestly, the jaded parents are the ones that seem to be the most vocal.
Taylor graduated from high school last year at the age of 20. She started public school at the age of 4. That's alot of IEPs. In all of those years, I only had one bad school experience and it wasn't the school,just the teacher.
You will run across at least 1 teacher that shouldn't be teaching or should have retired eons ago. But honestly, I think that's a normal part of the school process for any child.
I never had to fight to get Taylor the education that was right for her. Granted, my situation is a little different in that Taylor is profoundly developmentally disabled. Still, we were blessed with the teachers and aides that truly are there to help these kids learn whatever they can.
I came across the same angry, tired, disenchanted parents on my way up through the school. It's hard not to listen to them because we like to think we can get help from those that have gone before. However, take everything those parents say with a grain of salt. They are only focused on what is negative and they won't share the good stuff. Maybe they think they are helping, but as you know...they aren't.
I have no doubt that you will do what is best for Sammi as she goes through life. You will always have times where you wonder if you made the right decision, but just know that in the end...you did. Trust me on that one. :)
I don't think any parent with a child who was born with Ds ever give up. I promise you, it is NOT an easy process dealing with the school. You may think it's going along all hunky dory, but all of a sudden BAM!
You WILL need a special needs advocate. The school WILL over power you if you don't have an advocate. The school does NOT want the parent input, even if they say they do. They WILL plow right over top of you. Prepare yourself. It's one HELL of a ride.
Our advocate told us the following, "there will be a nice calm easy going period, but it never lasts long" That advocate hit the nail square on the head. We had periods, even tho they were quite brief, that went along wonderfully, but we had more moments of struggle and bickering with the school. The school WANTS control of your child. They do NOT want you involved in their learning. Even if schools say they do, they don't.
Educate yourself now. Gather all possible resources and make sure you get yourself an advocate. The schools will listen to an advocate.
You WILL have to remind the school that YOU are the parent. YOU know your child best. They tend to forget those facts. THEY want to be in control.
Don't back down with the goals you have for your daughter. Stand up to the school and never back down.
Ahhh, Becca, this post has hit me at a time where I myself am struggling with "the fight"! I am NOT giving up, but must say that the fight, at times, completely consumes and takes you over. It is not fair, it is not fun, and I do not like it one bit! Up until this year, I too was one of those idealistic parents, never having really faced the need to fight (at least not very hard), but being in it now I can more easily empathize with those parents that have gone before me...some of whom have given up. I do hope that you and all the others with much younger kids will be able to continue to live with that idealistic outlook, and that the work I am doing to get Shelby what she deserves, will pave an easier path for you. But, I realize now that what those parents of older children were trying to say, is to have a little realism in the back of your mind and be prepared, armed and ready if need be, for the fight that you may very well likely be faced with some day :)
Thank you, Sandi!!!! An excellent perspective. I am sure you will help to pave that way, although I do hope that your fight isn't too difficult and that you're able to make things happen the way they should for Shelby. I continually wonder why the school systems seem to come up with compelling reasons why our kids shouldn't get the best educational opportunities possible (I'm sure it's just money). Is the definition of FAPE too vague? Perhaps "appropriate" isn't the appropriate word there.
The driving force behind my post was another parent I spoke to the other day who said that her (local) county didn't have full-inclusion, and that her daughter was in a self-contained classroom. I'm pretty sure that's not the case, and when I asked her she said "Well, that's the way it is in the school she's in now, and in her last school. I don't know." That "I don't know" really sounded to me like, "I gave up a long time ago and couldn't be bothered to fight to ensure she was in the right school environment, even if it meant trying to get her into a different school." Am I wrong?
As for the parent you spoke with... it does seem as though the options for our kids, especially those more "in the middle" as far as abilities, are fewer and farther between, and I suppose some parents do feel as if they just won't ever win the fight. It takes a LOT of resources to play their (the schools) games and not everyone has access to those resources. It's just hard, no real easy way to put it! It certainly shouldn't be, but it's what I'm finding out first hand and I'm really wishing I had listened a little more closely to those trying to give me warnings/advise/etc. so that I could have been better prepared from the get go.
Hello, not sure how i ran across your blog, but i just had to givve you some positive thoughts! our son graduated high school at the age of 18 and is now still with the school dist. but in a work program. i loved his high school experiece! he took many classes with his peers, art, guitar, ROTC, and others i just can't seem to remeber. he was also homecoming prince in his juior year, every where we go in our community some one knows him and stops to say hi! this is how inclusions should work in my opinion . . . it's not just about being in the classes it's being welcomed and acknowledged as a contributing member.
hope on over and check out his blog! we've not been real good about keeping it up dated lately, we are trying to do better. Kevin just keeps us so busy we run out of time.
http://theworldthroughkevinseyes.blogspot.com
good luck with the school experience, i'm sure you'll make it a positive one!
sorry, it should have been
http://theworldthroughmyeyes.blogspot.com
Becca...I know how you are feeling. Our daughter just started kindergarten this year. I have worried so much about her education and I'm sure I always will. As her parents we will do everything under the sun to make sure she gets the best education she deserves. So far everything is going very well for her. She loves School...She's learning new things and she has made so many new friends! We communicate weekly with her teacher....she gives us the curriculum on Friday for the following week so we can do activities at home to reinforce what they are doing at School the following week. We try to do alot of hands on activities, crafts, etc. I do hope that our experience through the years of public school will be a positive one for our children because they deserve only the best! I know as parents we will always be postive advocates for our daughter even through the rough times. It is so nice hearing the postive sides from other parents on your site. Thanks for posting about this.
I must admit the FIGHT scares me. I just don't get it! As the mother of an 18 month old with Down, why is a FIGHT necessary? It just doesn't make any sense. I can fight, of course, but jeez shouldn't we all be on the same page? Based on this post I see that is not true. And with all the cutbacks these days in the public schools homeschooling may be my best option. Not sure yet. I'll cross that bridge when it comes. All I know is I am storing up information right now on IEP's, etc. and I am armed and ready. Hoping not to go to battle, but ready if needed. Just writing that makes me sad.
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