Autistic children?

Hiya Mama's.
Just wondering if any of you here have autistic children.
My daughter will be 6 and has had a diagnosis of Autism Spectrum Disorder
since before her 2nd birthday.
Over the years Ive gone to local support groups and sites in regaurds to the issue...
but it just seems to me everywhere I friggin go people are so focused on the cause and attacking someone.
Seems like everyone has a "fix my kid " attitude.
Its just almost always a negative experience.

Personally, I never felt like anything was "wrong" with my daughter.

I just really think it sucks that the treatment for most of these kiddo's revolves on making them "normal"
or atleast make them seem more "normal"...by a clinical definition.

I always hated the fact I had to put a lable on her... like a can of soup.

Anywhoooo's ... just lookin for a more positive outlook on the issue
from some people that know where Im at.

 

I won't even pretend to know what you are going through, but I can tell you that there is no such thing as normal. There is no need for you to put a label on your child, society will do that for you. All children have special needs, but the most important need is Love.

 

Society... meh... wheres the exit?

I learned very quickly to ignore people to say the least.
Then theres that rare moment I just feel like shoving it in someones face.
Like the trendy mom with her fancy clothes and neatly pressed children at
the grocery store ... giving me looks of death because my kids appears
to be screaming for no reason at all, and has no shoes on in
the middle of winter.
Id love to take the time to educate her on the fact
that shoes hurt her feet. I don't know why, they just do.
She screams cause I took to long in the store and unlike us "normal" people...
we don't see a 60 watt cycle of a florescent light... she does.
Shes screaming cause she wants out of this RAVE I call a grocery store.

But I restrain.
Its not like those people even know what kids are, they are just cute accessories.

 

hey, mama. yeah, i totally understand where you're coming from. it took many years to get my son to wear clothes and shoes in public. he still gets in trouble for kicking his shoes off in the classroom, lol. and hats...forget about it! he hates having his hair washed too.

i been getting those hate vibes in public places for the past 10 years. but i keep taking him everywhere, partially because he should be able to go anywhere he damn well wants to go, partially because the public needs to know we're in an autism crisis goddammit, and partially just because i kinda like pissing them off, lol. 10 years of being an autie mom has given me major attitude. we're not going to cooperate with being swept under the rug.

in my case, my son became autistic after an adverse reaction to a vaccine. to my way of thinking, he has a traumatic brain injury, not a 'developmental disorder'. he had a major regression after the vaccine reaction, and became non-verbal. it's been a long struggle to help him heal from the neurological damage and regain the ability to communicate to some extent. pisses me off that the government gives all the money for therapy to the school districts and then my kid has to compete with the athletic program for therapy funds. he can't even talk well enough to be understood, but he only gets one 1/2 hour speech therapy session a week at school. sucks. it's like they want to have it both ways, he's abnormal and shouldn't be out in public places inconveniencing them, but on the other hand it's not a high priority to get him the therapy he needs to adapt to our society. i hear you that being labeled sucks, but without the label of autism he wasn't getting squat for therapy. ironic.

i could go on and on, lol. welcome, and pm me if you feel like it. i have found some things along the way that helped with some of the issues you described in your posts. i'd be happy to share. meanwhile, you're doing the right thing to keep loving your child and living your life. don't let the bastards grind you down.

 

sorry I'm not a mama but awesome post! I worked with adults with developmental disabilities for a couple of years and LOVED it! I wouldn't mind doing something along those lines again someday. And first off there's nothing wrong with your daughter!!! I feel more at home around dd people than I do everybody else. They're my people. Some of the clients I was closest to were autistic. They were non-verbal (not that they couldn't communicate!) and had secondary diagnoses of mental retardation.

One of my coworkers and a good friend has an 11 year old boy who's autistic and he also has a daughter roughly the same age as your with down's. They're just amazing amazing people. I'd easily say that the people I was priveleged enough to work with were my greatest teachers in this life about what's worth living for, and not for that matter, how to be myself, how to love... just everything. I know it's not easy all the time but bless you for viewing her like you do.

I don't think we're here to fix them, I think they're here to fix us.

Here's a place a good friend of mine went to, as she worked one on one with a young girl with autism, and as far as "treatment programs" or whatever they seem to be pretty damn progressive. They're f#$king expensive but they might have some literature worth checking out in case you're interested. Even just knowing that there are people out there who are looking at this from a different angle I find inspiring.

http://www.option.org/

 

I'm a therapist for children with autism. My therapies are not intended to make them "normal" because there is no such thing. I try to make life easier for these children. I have given the opportunities for children with autism to find appropriate language to express themselves. They later have found the words that express their emotions. Now they don't have the tantrums and anxiety that they once had before. Is this making them "normal?" I don't think so. Everyone needs guidance with emotions. I know I do. My therapies are a mixture of ABA, play therapy, and emotional coaching. Always use people-first language (child with autism). Rejoice in their strengths and not their weaknesses. I believe that these children are gifts. <3 Good luck in the path ahead of you.

 

hey sorry this is the link to the son-rise program.... it's how the option institute got going I believe but wading around that other link might not get you where you want to go.

http://www.autismtreatmentcenter.org/

 

ty for the link jrnyman and happy upcomming BDAY!

Im fully aware Im not here to fix my daughter.
I never felt she was broken.
That wasnt my point, I just meant that thats the common attitude I run
into when talking with other parents locally and on other forums.
Seems everyone looking for someone or something to blame.
Im proud of who she is, she smart and talented and shes come sooo far.
But that dosent mean its been easy for either of us.
Today... we drive 30 min to get to her speech therapist.
It was so nice out this afternoon.
I pull in the parking lot and I goto get her out of my car ...
shes naked. Clothes are nowhere to be found.
I assume they went out the window.
lol ....

 

^^ that is an awesome story! the thing i love most about individuals with "developmental disabilities" or whatever they want to call is how they are always completely themselves, no holds barred. don't wanna wear clothes? out the window they go! i worked for a while with adults with mental retardation/autism/other developmental disorders (same place as jrny actually) and it was one of the most fulfilling things i've ever done. i miss it tremendously. i definitely learned so much about myself, and about the craziness society calls "normal." in the REAL reality, normal is being yourself. too bad the rest of society doesn't see it that way, but i think these kids (and adults) with autism/mr/whatever are here on this planet to help show us the way back to being who we really are. it's beautiful! thank you for being a loving mom who is dedicated to your daughter being who she is, not the cookie cutter carbon copy of "perfection" society says she should be.

 

lol honestly I think the naked thing is one of my favorites. everybody I worked with used to freak out and I just thought it was great how sometimes it was naked time.

sorry I wasn't trying to imply that you felt the need to fix your daughter. Actually I'm psyched that you seem to have anything but that view. It's not common in my experience, both in the field (perhaps especially so) and with parents. You're an angel to view your daughter the way you do.

how many times do you just randomly want to get naked but shouldn't? I'm a little white so I tend to get fried but hell it's like 100 degrees here today... and I'm naked as a jaybird right now! lol

and just out of curiosity did she know you were going to the speech therapist?

 

^^ good question... i was wondering the same thing. i know a LOT of the clients i worked with got naked or exhibited similar types of "societally unacceptable" behavior in conjunction with doing things they didn't want to do. as a way of communicating they didn't want to do it.

although it sounds like her not wanting to wear clothes is a real touch/pressure issue for her, so maybe it has nothing to do with it.

 

She likes therapy and usualy asks to go... cause its in a big gym.
The windows were down... I think the air just felt good to her.
Shes been so wound since the weather changed.
Just wants to be outside and in water.
She has phases.... only wore dresses for almost 2 years.
That pair of wings she has on in my avi pic....
she wore everyday everynight for 9 months.
Now she doesn't want to eat anything unless its white.
white toast, rice krispies, american cheese.....

 

lol that's great. so how about bananas? or does the yellow peel disqualify it? and when she does this do you wrack your brain for different things that are white? you must live an interesting life.

 

Every thing's funny ... after it happens.
So far so good on the bananas so long as I'm sneaky and peel it first.
She used to FREAK if I took the peel off
and shed throw it out and want another.

 

lol so you have to be very very sneaky.

 

My boyfriends baby brother is autistic, he has his good days and his bad days, which can be pretty bad. I don't think there's anything wrong with them, they're just different but I think why people want to find a cure is because it can be pretty hard on the parents because people don't understand...but I could be wrong, I don't really know. After sitting for them a few times he actually seems happy despite the "freak outs and I actually love watching him now, just as long as I don't have to give him a bath, he doesn't like them...

 

So I'm on day 8 of "only blue shirts"
She only has 2 blue shirts, so shes resorted to
turning my sons shirts on inside out they come to her knees lol.
I'm picking my battles.

 

I observed a son-rise session. It was awesome. There are several downfalls I found in this program. 1-It costs A LOT of money and is NOT government funded. 2-You have to devote 40+ hours a week in a one-to-one setting. 3-It is not research-based; therefore, it may not work and this is why the government will not fund the program.

 

just out of curiosity do you ever mimic her behaviors? like if she doing the shirt thing do you ever do it with her?

and yeah, bumble, the son-rise program is hella expensive. although from everything I've heard from people who have worked with it it's been highly effective. I think it's greatest strength is that it comes from an intuitive rather than scientific approach... which of course doesn't exactly make it govt stamp worthy.

 

I know there seems to be a lot of pressure on these children to conform to the norm, and it is really a crucial part of their development that they don't. I know I'm not a mother, but I am a brother to an autistic, younger sister, two years my junior, also with oral appraxia and ADHD. I'm 15.

I guess I have a few questions about some of the provisions made for your daughter in the USA, seeing as I've kind of experienced things in the Canadian system. You say she attends school? My mother was quite the trooper, especially when we were younger. She home schooled both of us, until I hit grade 5, and then just continued to home school my sister. So what provisions are made in the classroom for your daughter? Does she have around clock EA assistants? Has a sensory motor room been set up for her at the school?

I don't mean to steal your thread, so tell me to back off If I'm taking over, but I'm also wondering what sorts of extra curricular programs and such there are down there for children with special needs. I know especially later in her development my sis really benefited from social interaction, and as she grew out of her erratic sensory needs, such as different sponges, bean bags, crash pads, bubble tents, trampolines, hammocks, etc. she began to go through phases very quickly, and my mother and I had quite a bit of difficulty keeping up.

I'm sorry I've been using past tense, see I've just moved out for reasons I can't control, and don't see her near as much as I would like.

The doctors told my mother when she was diagnosed at 3, that she would never talk, or have an independent thought of our own, and in that respect for certain she has blown everyone out of the water. She doesn't stop talking now. She has pretend friends(some of which can be quite troublesome) and can tell stories like no one I've seen. She has an incredible imagination.

Ahh, I have to go to school now, but if you have any questions for me, please feel free.