Wednesday, December 28, 2011

The Public Face Of Autism

I don't have time for an incredibly well written, witty post.  With this kids still on holiday break and hubby at home the last few days my time has been spoken for.  I do however, have a small favor to ask everyone in the autism community.  See that picture above the post?  Stop using it as a stock photo for autism. Please, just stop.  It is degrading.  It is humiliating.  It is stigmatizing.  It is perpetuating stereotypes.  It doesn't represent autism.  It doesn't represent anything other than outdated, misconceptions of what autism was thought to be. I'm tired of seeing it attached to 1/3 of every news article, or otherwise information about ASD. Do you want people to treat your autistic child with respect, love and kindness? Sure you do.  We all want that for our kids. Then, please portray them as possessing those qualities and deserving those things. Insist that others use respectful images and words in association with autism.  No, this doesn't mean that Autism is a bed of roses and always should be spoken of as such.  Just remember you are the ones that are telling the world what it means to be autistic.  Ask yourself before sharing and speaking... is this a representation of how I want others to view my child/loved one?

                                         Thank you.

Sunday, December 25, 2011

Merry Christmas

Merry Christmas from our family to yours!
 From left to right: Bubby, Beans, My Husband ( I don't have a clever name for him yet!) Me, and CJ

This picture is rare in that we haven't had any kind of family picture taken in 9 yrs. Beans was way less than happy about sitting and Dad was subsequently bitten and pinched several times,  but we got it!

Sunday, December 18, 2011

Accepting Autism

Yesterday, I posted a video about Adults with Autism that the wonderful people over at Rethinking Autism made.  It isn't new, but seems to not have been circulated as much as I wish it were.  We really do need to rethink autism. We need to rethink how we think about it, how we talk about it, how we feel about it, how we treat it, whether we treat it, and so on.  We need a discussion that is frank, open and really holds people with dismal opinions accountable for these opinions, these half truths, these myths they spread to scrutiny.  We need people to think about what they say and how these things affect those on the autism community.  So many times,I think people think that the mother on the pity potty about how hard it is to manage autism, how vaccines stole their baby, how they cling to false hope that their child will miraculously recover, on and on... but we don't challenge her.  It's her opinion, we say.  It's her right to believe it, we say, but what about autistic rights?  What about the right to be considered a full fledged human being with with a full experience of life just like anyone else?  Their kids will be adults one day.  They will still be autistic. You don't recover/cure from neurological differences.  The stigma they stick their kids with today, will be their kid's burden to carry tomorrow.  When I wrote about how I value my son Beans just the way he is and how those we associate with seem to see his potential as well.  So, today in this post I'd like to share another video from Rethinking Autism:

Friday, December 16, 2011

Get to Know an Autistic Adult

I'm the one in the black dress at 1:00 on the video

Reminders from NT-land that I could do without

Yesterday, I received another e-mail newsletter from the regular ed. 2nd grade classroom from Bean's school.  I guess this is due to inclusion, but he is rarely in the regular ed room.  He is in a self contained, autism only classroom due to his level of need.

I am usually not one of those moms who gets upset about what other kids can do compared to her own.  I didn't cry when my boys were diagnosed, and I've never ever came even close to crying during an IEP meeting.  Why would I?  I remember when I did the Parents As Teachers program (early childhood program for babies and toddlers) part of that was regular Denver II screenings.  My boys failed, Beans totally. Bubby just screamed through most of it, lending me the 'most patient parent I've ever seen' moniker from the kids' pediatrician and the PAT lady.  I sat there quietly as they'd struggle to do tasks, or even act as if no one was even speaking to them at all.  I was told that I was the only parent she'd ever seen that did not intervene and try to do the tasks for them, or keep interrupting the tests by insisting my kids CAN do this or that task.

I insisted that if I were to sabotage the results in any way, then it would not be a true measure of their ability, and besides I had no stock in their developmental tests.  As far as I was concerned every child developed differently, and it was no reflection on them or me if they were behind.  I have no reason to live vicariously through what my kids do.  We are separate.  I guess, that if I had compared my kids to other kids more often, then I would have noticed their autism earlier, but that's neither here no there at this point.

My point is in this post, is that I can't help but feel a little irritated, and sad when I am reminded weekly of what others kids Bean's age are doing.  The regular 2nd grade has spelling lists.  I'm listening to his ABA therapy and they're working on holding a crayon correctly and coloring in the lines.  The regular 2nd grade had a food drive.  Ian has a goal of sorting items of food, clothes and now toys to different bins.  They remind the 2nd grade class to not chew gum in class.  My son chews electric cords, computer chairs, and obliterated my laptop cord by chewing on it.  Nothing can be left out in his reach, or he will eat it.  He has chewed up a good portion of Bubby's DS games, just because Bubby forgot to put it away and left it by his bed in the bedroom they share.

I know that it is customary to send special ed parents newsletters from regular ed classrooms, because most of those kids are somewhat included in those classes.  I have watched all the kids that Beans started with in preschool in his autism class learn to sign, use PECs, speak, get potty trained, use utensils, and yes, even somewhat get included into the regular class for their age.  In fleeting moments it makes me wonder what I've done wrong, but then I've met the other parents and know for a fact that they don't provide their child with more than I do with mine.

However, to end this post on a positive note, I have been told by most of the people that have worked with him,one on one workers, paras, teachers, ect.. that he is their favorite. He walks into any room and everyone throws a party for him. Even at home, everyone's is always happy to see him.  The other day I asked his teacher who is extra fond of him, so that I could be sure to include them on my treat basket list.  She came back with 11 names!  From the school nurse to the secretaries!  I followed him and his para into the school to leave the treats in the office last week.  Beans ran in like lightening and I could hear people calling him from the office where he rounded the corner with gusto and jumped on the secretary's lap hugs and tickles.  This is what they do everyday.  Then, on his way to the classroom he gets fives from all the kids in the hall, who know him by name.  He is a popular little guy! 

I guess, when I think of all the happiness he gives to others with his smiles and cute way of just being I have to admit the first part of this post doesn't seem like such a big deal.

Tuesday, December 13, 2011

Anticipating an IEP meeting

Tomorrow, I have an annual IEP meeting for Bubby at his school. We'll be updating his annual goals, as well as adding new ones related to his math issues.  We just had one about a month ago to add language and spelling services to his IEP.  I think I go to more meetings then a CEO.  I got a call to schedule Bean's IEP yesterday.

Today, I will be gathering all of Bubby's report cards, progress reports, ect  that I have not yet added to the monster 3 ring binder than chronicles his life.  From the very first special ed testing, to every doctor's report.  It's all there.  Sometimes, I have info that they don't and they have to take copies of MY files. lol  I have concerns about the work they're doing in speech therapy and am going to request to see data on progress.  I keep letting that area go, and I need to put my foot down.  Now that he is in the Intermediate Center (4th-6th grade or 9-12 year olds) the speech path is by far superior to the old one, so I have seen some progress in his conversational speech, particularly the ability to take more than one (even one is progress) conversational turn during a conversation.  Just last year, he would ask you 100 million very personal questions and then walk away.  If you asked him something, he would likely not answer, or if he did it would be short, without any info.  As a matter of fact, the other day we were going through the annual questions to re-qualify him for community based services (or the &^%$ wait list, since there are no services being given at this time, only space on a list) and he did wonderfully on answering questions.  Not only did I see him do well in answering the questions on topic, but he fibbed... not a big fib, but he anticipated what the socially correct answers were, and answered them that way.  I was amazed.  For example, he was asked " what do you do when you're lonely?" He answered " I find someone to keep me company." Or, "what do you do when you're bored?" He said "I find something to do to occupy my time." Which is untrue.  Both of those things would have required assistance from me and he would have gotten relatively whiny about it, too.  The thing is, he knew that on a social level it was embarrassing to say that he whines and has a fit when he's bored or lonely and needs me to redirect him.  He also told the case manager that he prepares his own food and while he can do some things, he by far still needs me to do most of it.  (and he has a huge meltdown every time I insist he try to make new things himself) It's been a slow process.  The point is, is that he knew most 10 yo boys make their own snacks and that he was different.  I really didn't think he had that concept of himself vs others, but I guess he does.

I have gotten off track on this post, babbling. :D  I will be doing lots of research on dyscalculia and the evidence based treatment options today, so I will be posting lots of link on Inner Aspie's FB page if anyone wants to know more about it, I also apologize to those of you that already follow, but don't want to know more about it if I am clogging up your feed.   Check back there tomorrow for results about the meeting.

Sunday, December 11, 2011

First/Then Bathroom Schedule

This morning we had another little mishap with Bubby using almost a whole roll of toilet paper when using the bathroom, causing the toilet to get backed up.  I have tried lots of times to remind him and chat with him about what is the proper protocol in the bathroom for how much toilet paper to use, and even giving up on that and telling him to use wipes, but alas.... he still struggles.  So, I decided that I should make him a First/Then schedule like I had to with the shower.  I feel he is too old to have me hovering over him in private moments in the bathroom, as well as me being a helicopter mom does nothing to foster his independence. I thought that perhaps I would share the schedule with anyone that might like to use it as well.  This is not an uncommon issue in the autism world.  Feel free to download it if you can use it.

PS. The only reason that I put the first part on there about sitting is because he has a weird phobia of snakes somehow being in the toilet, so he hovers, thus making a mess. I think this has gotten better, but just in case I left that in there.

Friday, December 9, 2011

Class work

Another meltdown happened today for Bubby due to being frustrated when he couldn't keep up with the class.  I'm not sure how to address this.  He IS much slower at doing his work than the rest of the class, but I also know that the teacher can't always just stop everyone from moving on so that he can catch up.  He tends to struggle with spelling due to not having much phonemic awareness (which is currently being addressed in with extra help in spelling) so he has to copy words letter for letter instead of from memory.  That slows him down considerably.  He is supposed to have a para available to him in the situations that it happens in the most, which is the only two classes he switches to another room for.  I'm not sure if he had a para assist him today , or not.  It's my opinion that he needs to leave the room until he can calm down if he feels a meltdown coming on.  He is supposed to request a break.  I know that this is the opposite of what most parents request (and the school staff has argued with me about it as well) but I feel he is way too old to be crying and carrying on in front of his peers.  If he can't get his meltdown under control almost as soon as he gets upset, then he needs to get some quiet time to himself, so that he can calm himself down with dignity.  I don't have many meltdowns where I get that upset and I had fewer than 5 the whole time I was in school, but I am a girl.  I tend to shutdown, before meltdown, but I have had it happen where I can't control my tirade of tears and barrage of insults and blubbering idiocy that comes spilling out.  Those moments are so full of pain, and desperate anxiety.  I would never want to be on public display, so it's my belief that my son should be afforded the dignity of getting his emotions under control in privacy.

We have another IEP meeting set up for next Thursday where we will be updating goals and I plan to bring this topic up, as well.  As I mentioned on the FB page his teacher does agree with me about the dyscalculia and agrees wholly that we should get him some extra help in the maths dept.  I love, love, love his teacher this year.  She is an older lady, old enough to have been my teacher, and so kind and knowledgeable.  She is the one that helped me to pursue CJ's testing for dyslexia.

I hope it all goes well.  I'll try to blog about the results of the IEP and what the team suggests we do about the issues of Bubby wanting the class not to leave him behind in worksheets.