" In a box not a bottle" Asperger's revealed

[Seraphim]

When I went to see the lady from the community service place she signed me up for some online parental ABA and I really have to get on that. Because there is homework that I have to do and send in.

[Seraphim]

When we got our flu shots little R had to fill out his own form. That's when you see his disability as glaring as the nose on your face. He can't spell my name or his father's. And that is something that you take for granted that once somebody knows how to write and how to read that they would just learn those things. But it is something that he has to do over and over and over and over to be able to remember it. He can remember his phone number if it is spoken but he can't remember how to write it down. He had a hard time understanding some of the medical form. When learning new information that he has no basis for in his rote memory then he becomes easily confused. My son learns everything by his rote and long-term memory. Everything he has learned at school he keeps in his rote memory. And when he learns something new he searches his rote memory to see if he can find something else to attach it to something that's the same. And if it's new he becomes confused because he has no basis for what he's learning. I went through the form with him and then some places I wrote the answer and he wrote over top of my writing. I'm going to have to go over with him how to write my name and how to write his father's name. I could tell he was a bit stressed about transitioning into adulthood. He did not want to fill out the form and he got to sign the form as his own independent adult person and that kind of upset him too. I know he's afraid because I know deep in his heart he knows he is lacking some very elemental skills that other people have. And that is unfortunately the phonological learning disability and it will never change at this point. All we can do is go over things and go over things and go over things and go over things and I hope that they stick in his rote memory. Also his working memory is only in the 2nd percentile which is extremely low. This is why my son needs a special needs social worker to make him comfortable transitioning into adult life.

[Seraphim]

Good grief!!!! The homework training they gave me is if your child is non verbal. HELLOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO I already taught my son to speak. He is completely verbal.

[Batya33]

Good grief!!!! The homework training they gave me is if your child is non verbal. HELLOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO I already taught my son to speak. He is completely verbal.

 

Yes, that sounds wrong but a question - are there parts of it that could be helpful despite your son being verbal? Meaning, perhaps it's relevant to a person who is verbal but has issues with social communication (which of course a non-verbal person would as well). I hope it's just a matter of some administrative person made a mistake and there is parent training for children who are verbal.

[Seraphim]

Yes, that sounds wrong but a question - are there parts of it that could be helpful despite your son being verbal? Meaning, perhaps it's relevant to a person who is verbal but has issues with social communication (which of course a non-verbal person would as well). I hope it's just a matter of some administrative person made a mistake and there is parent training for children who are verbal.

 

Oh absolutely I think their stuff there for me to learn in the later modules. And even in the modules that I just listened to there's definitely things for me to learn. It would definitely be useful with other children or even if my son had children. If he had children they would most likely have autism as well.

[Seraphim]

Another stumbling block . Shoot me now.

[Seraphim]

They make everything so damned hard so that they hope you will give up. Eff the system, no , reaalllllly.

[Seraphim]

Okay ,did somebody seriously really just ask me this. You have a medical document stating my son has autism and then you ask me why he would need help from a social worker to learn about the world?????? And you have a job running a charity. Figure that one out. You would think you would know that if I'm applying for funding Geee ,I kind of need the help so you're going to make me go out and spend money so that I can get help. Let me just beat my own head with a lead pipe.

[Seraphim]

link removed

Companies who hire people with autism.

[Miss Firecracker]

Hi Victoria,

 

Just got the time to read your journal. I remember when I thought my younger autistic son could someday be ok. Then finally, at some point I realized I had been in denial all those years. So sorry you are having a hard time. You, Fudgie, and I all understand what it is like to lose someone while they still breathe. No way to explain to anyone, just no way.

 

Hopefully your son will qualify for disability support. Mine has been getting a monthly check for seven years now. His disability is classified as one not expected to improve. He has low IQ, autism, and schizophrenia. But the rules here say even so, he will still be reviewed every seven years. People who are likely to improve are done every three years. My son's psychiatrist is really the only one they have to ask, and he will support us all the way. I am still feeling uneasy during the process. The doctor has mailed the records, and I did my papers. Oh, what fun! It wouldn't have been quite as bad if they hadn't made me do that in March and then again in October. Apparently they just threw my first one in the trash.

 

Keep hanging in there, you are doing fine.

[Seraphim]

Hi Miss F!!!

 

Thank you so much for the viewpoint of someone who understands from a parent's point of view. That means so much to me. Hugs.

[Seraphim]

link removed

[Batya33]

I hope you get all the services you need. From what I gather from friends going through this you have to be such a strong advocate for your children especially in a school system or when you want government services. I know you can do it!

[Seraphim]

I hope you get all the services you need. From what I gather from friends going through this you have to be such a strong advocate for your children especially in a school system or when you want government services. I know you can do it!

 

Being that advocate is one of the hardest things I have done. The system is designed to make you overwhelmed and discouraged and angry and they want you to give up. Schools? They just want to pigeonhole your kid to make THEIR life easy . Grade school I had to fight them drugging him into silence and conformity. Highschool they wanted to stick him in the life skills program. Not that there's anything wrong with that program but he definitely has more skills than that. And he has PROVED that. He has an 80% average right now in the Applied programme. What more could I ask of a child with 2 learning disabilities and autism? And all the subcategory skills he has excellent in. But we have to fight for people to believe in him. It is crushing some days.

 

And my mom is on my case nagging daily about how she wants to see me do this. It is driving me to tears. Today if she starts I am telling her she needs to back off . He is my son and I know best how to help him and if she can't support my decisions don't talk to me about them.

[Batya33]

Do you have people -professionals, advocates -or even friends -who attend these meetings with you, on your side?

[Seraphim]

Do you have people -professionals, advocates -or even friends -who attend these meetings with you, on your side?

 

Hi Batya,

 

Not so much ,no. Everyone has a different opinion on how to do something.

 

Also every agency whether government or otherwise this is just a number's game. And while it is great for him that he is at the very high end of the scale it is also not good for him because he gets no government support that way.

 

So I have decided to redirect my focus. I'm not giving up by any means I will still pursue those avenues but we have decided to look for ways that better himself so he can support himself. There is a company in Toronto that hires people on the spectrum and they also do animation. They do testing to find out what you're good at and then if you fit in with their company they hire you. However he has to be 18. So 10 more months. So I think our direction is going to be finding companies that hire people on the spectrum.

 

My mom has been noticing that I'm pretty crabby the past few days. But I think this new refocus will help that.

[Seraphim]

Today I found an ASD advocate! Yay!

[WithLove]

Hi Victoria,

 

I've been wanting to speak to you about your son's Autism for awhile now, but didn't know this thread existed. I'm leaving work very shortly, but wanted to jot this down to go back to later.

 

I'm dating a guy that has a daughter with Autism. She's 5. Would love to bounce some ideas and experiences off of you. I'll post more a bit later.

[Batya33]

Today I found an ASD advocate! Yay!

 

Great news!!

[WithLove]

C's daughter is 5. She was diagnosed with autism about 2 years ago. She doesn't really speak, she flaps her arms, but other than that she's quite "ordinary".

 

It's difficult to say if she's high-functioning at such a young age, but I believe she is. She certainly isn't challenged. She speaks a few words. She knows Twinkle Twinkle Little Star, and can sing it in tune, except she doesn't say the words; they are just garbled sounds. She is in therapy and has learned some Signing; she knows how to ask for a snack, thank you, please, and a few others through Signing.

 

We were taught by her therapist that when she has meltdowns, that yes, you can leave her alone, but also you can pull her close for a hug; the pressure around her torso calms her down. They put a weighted vest on her to simulate this and she responds surprisingly well to it. Fewer tantrums, more listening, more eye contact. She is 100% better with eye contact now.

 

If you looked at her as a child, you'd never know she was autistic. Only when you notice her quirks do you realize it.

[Batya33]

I have friends who have children with autism. I don't think "high functioning" has to do with IQ or intelligence but with the social/emotional aspects of autistic behaviors.

[Seraphim]

Hi WithLove,

 

Severity is determined by language ability, cognitive function, and behaviour .

 

I know my son is very mild because his language ability is superior. He is not cognitively delayed and his behaviors are determined to be very mild . He has Asperger's which is high functioning. He is also in the 13th percentile which is determined to be very high functionality .

 

Every child with autism is so very different and severity is different. It is such a complicated disease. There can be as many as 20 different genes involved.

 

I am certainly no expert, just an expert on my child.

 

I would ask her dr about what they feel her severity is.

[Silverbirch]

The weight belt sounds interesting - I wonder if it works in a similar way to Temple Grandins pressure box?

 

I noticed at work this morning that my boss has placed a book in our office which is really more for teachers of school age children, and written by Dr. Tony Atwood who is considered to be an international expert on autism and Asperger's. It's some type of workbook.

 

Did you happen to read anything on the web by Lianne ?? Holiday- ??

[WithLove]

For my birthday last year, I asked for Temple Grandin's The Autisitc Brain: Thinking accross the Spectrum. It particularly interests me because she also had language difficulties at a young age; she described it as not being able to hear distinguish between consonants. It's very frustrating because we know she is a smart kid; she just doesn't really talk. She is getting better - she can now properly pronounce "hi" and "bye", and occasionally we hear "daddy". But for the most part, when she vocalizes, we're sure we are hearing her just garble some sounds that sound like words.

 

I've never seen the doctor's reports or anything in regards to where on the spectrum she is. Both of her parents go to those - I don't mind because that's how it should be. But my man isn't so well at relaying the info back to me, so I've kind of been in the dark as far as professional lingo goes. She goes to behavioral therapy and speech therapy twice a week; the behavioral therapy has done wonders for her. We went from a kid that never made eye contact and never even seemed aware that anyone was there, to a 5 year old that responds to her name, looks directly at you when you're speaking to her, and loves playing with other kids. In the beginning, they even suggested that she was deaf; that's how disconnected she was from the world around her. She's made such progress on that front - but she still doesn't talk.

 

What makes things even more difficult is that my man and her mother are not on good terms. Her mother has her full time due to C's work schedule, and she's the type of woman that holds their child against him at whatever cost, as long as she benefits. Like, therapy will give them exercises to do with the child at their respective homes, and the mother will purposely not do them, just to make C angry, or get back at him for whatever reason. It's so incredibly astonishing to me that she is like this. C and I are moving in with each other (for the 2nd time) and I'm hoping he will make the decision to fight for custody. It's a touchy subject, because I know he wants to fight for her because it's the right thing to do - but maybe not because it's necessarily what he wants. (He has never admitted this to me, but I know it to be true.) He's such a great father; she blossoms so much under his care. It's so frustrating to me to see parents at odds over each other and the child suffers because of it. I wish there was more I could do, but it's not my battle to fight. I just have to accept whatever he decides.

[WithLove]

Silverbirch - this is what the weighted vest looks like: link removed

 

It's pretty cool. The therapist described it to me as this: when someone with autism is overstimulated, it's like all the nerves in their body are scattered in all directions - think of it like all the nerves in your body as pieces of paper that just get thrown up in the air and scatter everywhere. The vest helps pull them back in and concentrate at the core. It did seem to help her a lot when she wore it. She was calmer, more focused on the activities the therapist was doing with her. She didn't freak out or anything when it was put on her, either.