Rambling post...feeling down...
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Rambling post...feeling down...
| Fri, 09-28-2007 - 12:36pm |
Ok, well no one on here really knows me, but I am feeling very down. I have posted a few times, but I am kinda low key. Lately all of the sudden since things have started to sink in I have been feeling angry and sad all the time.
There are a few issues as to why, school, friends, family and views on "labeling."


Dear CCMommy,
First off, you have perfect permission to ramble here and there certainly was nothing offensive in what you wrote. I don't remember how old Chad is, and the new dx thing makes for a huge period of adjustment, mostly for the parents! The family thing is sadly common, but remembering that they love him, too, and just don't want there to be anything too difficult for him or you ... well, in short, denial. Labeling doesn't mean anything if you don't want it to.
There are so many different schools of thought about when to tell your children, how to educate their peers, what is the most appropriate support so your child can grow -- and so much depends on your particular child. When children are very young, the label itself doesn't mean anything anyways (and frankly, most older people misunderstand the label). We always talked about specifics here, his over-sensitive ears and nervous system, what OT was for, what are stragegies that will help him when confused, what is not appropriate and WHY (over and over), reward systems and charts for behavioral modification, etc. After all, other children wear glasses, are overweight, struggle with reading, talk too much. It is easy to present your child's differences to him as something to work on, don't forget to highlight his strengths, and point out that everyone has areas of challenge. It's true!
As my son has never been mainstreamed per se, we have not had to deal too much with how other children view him, but I do think the inclusion model (not applied well everywhere) is that all children help each other in classroom and on the playground as members of a community, and in order to do so, there will need to be grownup modeling and eventually discussion so the needs are understood by all. The children are interpreting Chad as "Bad" because they haven't been offered a more appropriate way to think about what happens when he gets upset, etc., so I would consider with his teacher and school staff how to approach and support this with the class and school kids.
Our ds (at 10) knows alot about his own needs, and often how to meet them. He can verbalize needing breaks, being exhausted and too hungry, feeling confused, etc. This is now very helpful to him when he finds himself in situations that are overwhelming. BUT we are now homeschooling because school hasn't worked out for us at this point in time. He knows he has "a little autism" (his description) but we do treat the awareness thing on a more need-to-know basis, as we do not have so great a need for the entire world to know and I want to leave full disclosure to him as he gets older! But we are not hiding this dx (mild PDD-NOS) either, there are just many times when it isn't anyone's business. But others here are completely different in their approach to this particular issue, and I hope they chime in. I do not feel there is a right or wrong here, as I feel this is very personal.
And in the world of Spectrum, it is sad that many people are bickering, but man oh man is that human nature or what!!! Take it all with a grain of salt and read with discernment on what matters to you, esp. at first as you are doing research. I go way off of reading for long periods of time, then go out and read some more...
Anyways, I wanted to respond to give you many (((((HUGS))))). The parents -- and in many cases mostly the moms -- get a big case of overwhelm in this life of raising ASD kids. I have been lucky in ds having many ASD pals so I have a gang of ASD moms to hang out with and support each other. This really works for me. It's not like I don't have other friends, but in this role of parenting an exceptional child, nothing beats belonging, really. And at least here, the PDD/Aspie Board is another great place to let loose. So please do continue!!!!
HTH,
Sara
I know exactly how you feel! I am a lurker on this site - my ds (8) diagnosed with ADHD and anxiety. At 3 he had a speech delay - now cleared up, but sometimes I wonder about PDD nos or Aspergers - he has some social issues and is wicked smart memorizing facts. LOVES facts. However, doesn't meet half of the criteria, but it's more than ADHD. This board is the best - has the most articulate, interesting, compassionate posts on the internet I have found. IT SUCKS to have a kid with a hidden disability - by hidden I mean it is not obvious by looking at him (i.e. down's syndrome etc.). I don't think any disability is easy,and I am not minimizing the difficulties of down's syndrome, but at least people in general know what it is and have adjusted expectations for those kids. I know we get looks if my son acts out, or appears to hang back from kids (he gets anxious in large groups of kids). When anxious, he relies on his facts, further separating himself. I am at a loss at how to explain what his issues are - should I protect his right for privacy? Do I disclose the symptoms and not the causes (C. is learning how to be less impulsive, C. is nervous around large crowds of kids, C. LOVES to read about baseball) Those close to us, or who are friends obviously know about the whole story. Your family that thinks preschool would have solved the problem only add to your frustration. The best thing I have is a great friend-my sons best friend from Early Intervention preschool. He is also quirky, similar issues and it is so great to have someone to discuss and laugh with. She gets it. We live 4 hours away now, but talk every day after school to give a recap of the kids days.
I wish Oprah would do a show on kids that don't appear at a glance to be different, but have issues - the quirky kids that don't fit easily into a diagnosis, or do fit a diagnosis but still appear typical- and help the world look at all kids and families with compassion! Find yourself a friend who gets it so you have someone who really understands your highs and lows. Hang in there!
I've got an older kid (almost 15) who was diagnosed when he was about 6.
Thank you for both your replies. I really enjoyed reading them and its nice for moms out there to be able to relate to me !!!
The "label" has definitely helped us understand our kids and helped our kids understand themselves. My children are 13 and 11 and autism is just part of who they are. I do have autism bumper stickers and I wear an autism bracelet during April (gets annoying otherwise. I do wear it other times as well). We have t-shirts from autism races we have gone to and autism camps the kids wear.
however, I am careful not to think of them as "autism Mike" or "Autism Cait" only because I don't want it to be the only thing that defines who they are. It is Mike, who has brown hair, green eyes, loves to ride bikes, is very helpful and has autism. KWIM? It is very much a part of who they are. There is no denying it but I want myself and others to see them for the cool people they are first and not just a label. To me it is just part of who they are as much as being in our family is part of who they are. Is that confusing? I feel like i am talking in circles.
I have no problem telling people I have children with autism. I am very open about it. I get very angry with people who think he is a "bad kid" or "oppositional" but sometimes even with the label people still assume that. It is unfortunate.
I would have your school do an "understanding friends" type of program at the school. This helped my kids a lot through elementary and helps explain differences. They can also do social groups and even help identify certain kids that may be good role model/play mates for your son.
I did tell my kids around 9. Prior to that we would answer questions they asked honestly and at their understanding level. I deal with that like I would if a child was adopted or about the topic of sex. As it comes up as they are able to deal with it. I am still giving them more information when they ask and often now they give me information, lol.
My kids are at the age that I let them choose who they want to tell. I will do the talking for them if they like but when going into a new situation (like church school with a new teacher) I give them the option of whether or not they want their autism to be shared.
I understand about the "quirky kids" thing too. Mike is so "bright" that it is often assumed he is much more able than he is and it gets us in trouble all the time. When we do things like Special Olympics I always get comments "He is SOOO high functioning". That is until he completely loses it over some change or because he didn't understand a direction. I HATE that term "high functioning" but that is a completely different post but sometimes it can make me feel like we are caught between worlds in never never land.
As for all the differences of oppinion. That is a big big problem in the autism world unfortunately, but I think you will find here that even if we differ in oppinions on somethings, we have more in common than we have differences and it is quite a supportive place (as is APOV on autism as well)
Renee