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

[Cheetarah]

I didn't actually watch the video, I was just reflecting back on our previous posts. So I meant in general rather than specific to her video.

 

Having a disability isn't shameful at all. And I completely am behind that idea. Just not the radical types who thinks that no accommodations and/or interventions and therapies are helpful or necessary.

[Seraphim]

I didn't actually watch the video, I was just reflecting back on our previous posts. So I meant in general rather than specific to her video.

 

Having a disability isn't shameful at all. And I completely am behind that idea. Just not the radical types who thinks that no accommodations and/or interventions and therapies are helpful or necessary.

 

Yes, I think accommodations and interventions are and can be helpful. Some are helpful more so at different stages.

 

I think I'm struggling because my son got no therapies or interventions due to slipping through the cracks in early age. And now for him they just wouldn't be useful it's more of an accommodation situation.

[Cheetarah]

You know what simultaneously bothers me yet I find comforting at the same time? Special needs families are as catty as any other. You know how I have always referred to 'mom wars' and all that stuff...Well, that is there too. In the stereotypical ways and then in the ones specifically related to the special need. In the end everyone is just trying to parent their child the way they think is good and there's no one right answer.

 

But I do hate that divide. Parenting special needs children is already isolating because of the time spent on resources/therapies/personal research etc. Then you have this community of people and 1/3 of them agree with you, another third think you're not doing enough, and the rest think you are trying to make your child conform and you suck for that. It's so exhausting to have that judgment within the community when you have all the outside judgment from people who don't know anything about what it is like. I feel like I can't find a safe place. If I say I'm exhausted it's not okay because I'm making the implication my child is a burden. If I celebrate something new my son does, someone whose child is non-verbal acts like it is stupid because I don't know their plight and I don't "have it bad" so how could I complain two days prior..

 

My therapist and I talked about that a little and she told me I'll find my 'tribe' one day. Maybe. For now I'm just discouraged and don't talk about it outside my family, a couple friends. I don't write about it on here unless it's this(your) journal because I'm not in the mood to be judged, I'm not in the mood to listen to judgments on my child. I'm so selective with what I tell people lately. And I'm not embarrassed. I just think the world is not so nice, and the world doesn't need to know my business and add to my already full plate with their BS. That one doctor visit and how it was resolved(or wasn't) put that into perspective for me. Set the tone. There are more people who don't understand than those that do. Even people who should, don't. I'm more comfortable withdrawing than sharing. Which is not typical for me. People put a sour taste in my mouth and I refuse to spend my time/energy defending or explaining anything. My time is precious like anyone else's. I just want the best for my son. End of.

[Cheetarah]

Just want to add in here that this was a general aggravated vent, I don't have a beef but I realize my last paragraph makes it look personal. It's definitely not. And sorry to rant in your space.

[Seraphim]

You know what simultaneously bothers me yet I find comforting at the same time? Special needs families are as catty as any other. You know how I have always referred to 'mom wars' and all that stuff...Well, that is there too. In the stereotypical ways and then in the ones specifically related to the special need. In the end everyone is just trying to parent their child the way they think is good and there's no one right answer.

 

But I do hate that divide. Parenting special needs children is already isolating because of the time spent on resources/therapies/personal research etc. Then you have this community of people and 1/3 of them agree with you, another third think you're not doing enough, and the rest think you are trying to make your child conform and you suck for that. It's so exhausting to have that judgment within the community when you have all the outside judgment from people who don't know anything about what it is like. I feel like I can't find a safe place. If I say I'm exhausted it's not okay because I'm making the implication my child is a burden. If I celebrate something new my son does, someone whose child is non-verbal acts like it is stupid because I don't know their plight and I don't "have it bad" so how could I complain two days prior..

 

My therapist and I talked about that a little and she told me I'll find my 'tribe' one day. Maybe. For now I'm just discouraged and don't talk about it outside my family, a couple friends. I don't write about it on here unless it's this(your) journal because I'm not in the mood to be judged, I'm not in the mood to listen to judgments on my child. I'm so selective with what I tell people lately. And I'm not embarrassed. I just think the world is not so nice, and the world doesn't need to know my business and add to my already full plate with their BS. That one doctor visit and how it was resolved(or wasn't) put that into perspective for me. Set the tone. There are more people who don't understand than those that do. Even people who should, don't. I'm more comfortable withdrawing than sharing. Which is not typical for me. People put a sour taste in my mouth and I refuse to spend my time/energy defending or explaining anything. My time is precious like anyone else's. I just want the best for my son. End of.

Exactly, we can only do what is best for our individual kids.

[Seraphim]

My son is going to an Asperger's support group at the college tonight .

[renaissancewoman101]

Hope it is a good experience for him and that he can meet others like him

[Seraphim]

Hope it is a good experience for him and that he can meet others like him

 

I hope so Renny! It is run by his skills advisor and she has been talking to him about it since September. Maybe she is wearing him down.... Lol.

[Seraphim]

I'm just dying waiting to see if he gets accepted by ODSP.

[Seraphim]

This is the process he is going through now:

 

To receive Ontario Disability Support Program Income Support, you must meet the definition of a "person with a disability" as defined under the Ontario Disability Support Program Act.

 

Under the Act, a person with a disability is someone who has a substantial mental or physical impairment that:

 

is continuous or recurrent, and

is expected to last for a year or more.

The physical or mental impairment must directly result in a substantial restriction to the person's ability to:

 

work

take care of him or herself, or

take part in community life.

The impairment(s), its duration, and the restriction(s) must also be verified by an approved health care professional.

 

Who makes the decision about your disability?

Specially trained staff who work in the Disability Adjudication Unit of the Ministry of Community and Social Services will:

 

look at the information you provide about your disability, and

decide whether or not you meet the program's definition of a person with a disability.

This is called the Disability Determination Process. It is only done after we decide you qualify financially for Income Support.

 

How you provide information about your disability

If you qualify financially, you will need a Disability Determination Package to provide information about your disability. The package contains the following forms:

 

Health Status Report and Activities of Daily Living Index form

Self Report form

Consent to Release Medical Information form

instructions on how to complete these forms.

You will need to get an approved health professional, such as a doctor, to fill out the Health Status Report and Activities of Daily Living Index. This information will tell staff in the Disability Adjudication Unit about your disability and your ability to work, look after yourself or get out in the community.

 

The Self-Report Form is optional. You don't have to complete this form, but it will help us understand your situation.

 

If you meet the definition of a person with a disability

Your local Ontario Disability Support Program office will confirm that you still qualify financially. If you still qualify, you will receive Income Support.

 

If the Disability Adjudication Unit thinks that your disability might get better over time, you will also be given a date for a Medical Review.

 

If you do not meet the definition of a person with a disability

If the Disability Adjudication Unit decides that you do not meet the definition of a person with a disability, you can ask to have the decision reviewed. This is the first step in the appeal process and is called an Internal Review.

 

Does everyone have to go through the Disability Determination Process?

Some people only have to qualify financially to receive Income Support.

 

You do not need to go through the Disability Determination Process if you:

 

receive federal Canada Pension Plan Disability benefits

receive Quebec Pension Plan Disability benefits

are 65 or older but do not qualify for Old Age Security

live in certain types of institutions, such as a mental health facility or a home for people with developmental disabilities.

[Seraphim]

And I finally heard from the DSO more than a year after application, however only to say that they were collecting information.

[Seraphim]

He didn't like the group. He said all they did was sit around and talk. Who wants to do that?

[Seraphim]

Part of the stress is that I don't know if my son will receive the ODSP pension. I'm tired and I only have so much fight left in me. I told my husband last night if this goes to appeal you're taking up the appeal because I can't do it. They say mothers of autistic children have stress levels comparable to those of combat veterans and they are not kidding. The fact that I have to fight for every stinking little thing is unbelievable.

[Seraphim]

And as a mom without her mental health intact this is very difficult. As a mom struggling with PTSD.......as a military spouse.....I just have compounding stress after stress.

[Seraphim]

Today my son has decided he wants to go to the mall by himself on the bus to do Christmas shopping.

[Cheetarah]

Part of the stress is that I don't know if my son will receive the ODSP pension. I'm tired and I only have so much fight left in me. I told my husband last night if this goes to appeal you're taking up the appeal because I can't do it. They say mothers of autistic children have stress levels comparable to those of combat veterans and they are not kidding. The fact that I have to fight for every stinking little thing is unbelievable.

 

Is that actually documented somewhere?!

 

Well if it has to be appealed then it is a matter of getting more documentation for R - So taking him to appointments he very well may not want to go to.

 

Just wanted to share a little good piece of news - I ADORE the special ed pre-k program we visited today. Currently, there are 3 children and by Christmas, there will be 2 more. Maximum is 10. There are more kids in the afternoon program, but they are also the 4 year olds. They want to place M in the morning program, which is 8:45 to 11:30, because they tend to do better in the mornings(I agree - 2pm is the witching hour). There is one special ed teacher, 2 aides, and speech and OT are in the classroom two days a week. It is a smaller room, a quieter room. The lighting is great. It's not florescent. There are quiet spots for the kids to decompress. All the kids have developmental delays, mostly Autistic. There is a little girl in there that is very much like M. As soon as she saw him she hugged him and tried to show him the ropes. When he walked away she said "get back here you silly goose". They say she is going to be a teacher when she grows up, she really takes the ropes.

 

What I liked is that M didn't stim in there, which meant he felt pretty balanced. He was a totally different child as opposed to when we went to the general ed preschool. They do things similarly but with less enforced time limits. Like they aren't made to sit at an activity center for 10 minutes like they are in the general, more like they hope to see 3-5 minutes but they don't push if the child gets too overwhelmed. They also do the same routines every day. Their first thing was "getting the sillies out", which was walking in a circle to a song and going from walking slow, to running, to hopping, to sliding and then shuffling. Most of the children are not potty trained, but part of the routine is going to the bathroom when they get there, and before they leave. They don't have to go, they just have to do that routine. Sit on the toilet for a few seconds. I just would have to send diapers/pull ups. Everything is done in picture/visual schedules, which is perfect. They get to snap off their picture and put it in their baggie after they are done with each thing. The teacher's and aide voices are subdued, with inflection but a quieter tone. It's perfect.

 

I can totally see him happy and thriving in there. It's a setting I believe he can learn in right now. I am so happy with it.

[Seraphim]

Awwwwwww that is so so great that you love it.

I'm sorry I can't give a longer response right now because I'm just worn out. Just know I'm so so so glad for you and smiling and I love you guys. ❤️

 

There are a few study stating that. There is one right now by the university of Wisconsin -Madison.

[Cheetarah]

No worries. You should really dump some of those shifts.

 

Wow. Is it this?

[thejigsup]

That program sounds fantastic! When K was that age, all children had to be completely potty trained in order to attend preschool. No exceptions. As K wasn't completely there yet at 3, he missed out on preschool. I'm glad there are preschools for kids with autism now. There were none when I was raising my son. They either fit in or they were not welcome.

[Seraphim]

No worries. You should really dump some of those shifts.

 

Wow. Is it this? ]

Yes .that is the study I was referencing.

 

Tomorrow I work at night. Thursday I have a morning shift and afternoon shift and night shift. Friday I have an all day shift and night shift. Saturday I work 8 to 4. I dumped my shift for tonight.

 

These are the shifts that I work for just ONE department in December . Everything I have an L next to are my shifts. And on Wednesdays where we're closed I work another program.

]

[Seraphim]

That program sounds fantastic! When K was that age, all children had to be completely potty trained in order to attend preschool. No exceptions. As K wasn't completely there yet at 3, he missed out on preschool. I'm glad there are preschools for kids with autism now. There were none when I was raising my son. They either fit in or they were not welcome.

 

It does sound like a fabulous program!

 

R was in regular kindergarten. Yes ,he had to be completely toilet trained ,know how to put on his own footwear and his own coat. He was only fully trained a month before. And he didn't know how to get his own footwear or coat on and they wouldn't help him either.

[Seraphim]

I'm just sitting here crying my son got on the bus and to the mall all on his own! I am so proud! He text me to let me know he did it.

[Seraphim]

Yes .that is the study I was referencing.

 

Tomorrow I work at night. Thursday I have a morning shift and afternoon shift and night shift. Friday I have an all day shift and night shift. Saturday I work 8 to 4. I dumped my shift for tonight.

 

These are the shifts that I work for just ONE department in December . Everything I have an L next to are my shifts. And on Wednesdays where we're closed I work another program.

]

 

And in between these shifts I have dayshifts. I drive my son back-and-forth to school. I drive him to his three social events every week. I practice and sing every Sunday at church. I have church events that I convene. Plus I also clean toys in one of our daycare rooms every week.

 

 

My husband goes to work 730 to 330. He does Habitat for Humanity build's , packing and distribution of good food box. Also volunteers one night a week and our YouthCenter. He plays hockey twice a week. And once every two weeks volunteers for charity with the Knights of Columbus.

 

It's like a rotating nut house around here.

[Seraphim]

And tonight I'm not even really free to do nothing. Few months ago I told my girlfriend I do have an epicure party for her. So I'm doing that and I still don't have my damn Christmas tree up or the house lights. And half my Christmas shopping done.

 

I think I know why am tired I'm stupid.

[Seraphim]

My son made it to the mall but could only stay for an hour before he started getting really anxious without my being with him. So he got back on the bus and went to the college.

 

I'm still very proud of him he did it!