Looking to chat with other parents with Autistic children

[Mwills]

Hello,

My son has been newly diagnosed with ASD. I'm looking to talk with anyone who might "know the ropes" when getting services together and/or support outside of the normal refferals to OT/SPEECH/Scocial skills development.

There is a lot of info out there and it's hard to know where to start.

[kimbey76]

hi, I have two children diagnosed with severe autism, very crazy at first getting all the paperwork done and even just knowing what needs to be done, my kids were diagnosed almost 5 years ago now so it has been a while but I will pm you some info that will hopefully help a lot.

[Mwills]

Thanks for all the advice. That was great!

[CM]

Hello kimby76, could you possibly pm me some info as well, my son has been diagonosed with ASD as well, and like Mwills, I am somewhat overwhelmed at the overload of information out there, and where to start first. Thank you very much.

[puppyluv]

A fellow I work with has a young son with Autism. They now have him on a regiment of specific nutrient and they say there has been a difference in him.
I can get his email if you like and pm it to you.

[Mwills]

That would be great! :D

[CM]

Specific nutrient as in diet changes? I have done some reading online about changes in diet, sometimes it can be very beneficial. I am going to meet with a specialist in March, hopefully more information will be given to me at that time. I am more than willing to share anything that will be useful.

[kimbey76]

diet changes can help some kids, i did try giving my kids enzymes for a while and it made a big difference in some physical problems they have, bad breath, constipation, and it did seem to help with eye contact very quickly too but it is hard to find things to hide it in so you can get it in them, same with the diet changes, if your child will eat the foods great but some children are extremely fussy, the big things i have heard is eliminating wheat products, milk products and anything with red dye in it. these changes are often a big effort and although you will read about very rare cases where a child becomes 'normal' from this those are rare cases. i went through a long period of trying to cure my kids but after five years of living with asd i have realized they are still the same kids as before they were diagnosed, you do what you can to try to help them and teach them as much as possible and don't forget to let them have fun, they are still kids. i used to look at photos of my son and think that was Jacob before there was anything wrong with him, but its not true, and there are plus sides to the disorder that are hard to let yourself see at first. My kids are two of the sweetest babies i could ever wish for. i am pregnant right now actually with my third and last child and there is a good possibility this child could be autistic as well, but at the same time i haven't heard of anyone with three children all on the spectrum. i know how to handle a child with asd but i am really unsure what i will do if this baby is 'normal' lol. it is bittersweet regardless, it is like a gift in a lot of ways, you will get joy out of all the small things that other parents may easily take for granted.

[kimbey76]

this is not exactly on topic but it is very interesting, its a clip about an autistic savant, you need the volume on

http://www.wisconsinmedicalsociety.org/savant/wiltshire_highres.wmv

[Mwills]

Thanks kimbey76!
I've heard the same things but have not found a resouce guide for what to limit and what to offer when it comes to foods. Does anyone have a diet plan or link to one for Autistic Children?:confused:

[kimbey76]

http://www.gfcfdiet.com/links.htm this website has lots of links for info about dietary changes and alternative treatment options if you want to research it, you can also look up diet and autism or digestion and autism on google, please take what you read with a grain of salt, you are going to hear extreme situations, not the normal results. that isnt to say that trying these things is a waste of time, i tried some things, you may find something very helpful but be wary of the overnight cure, it can be disappointing to get your hopes up only to face reality. autism is bigger than just food allergies, although they may contribute to symptoms for some kids.

[kimbey76]

http://health.msn.com/healthnews/articlepage.aspx?cp-documentid=100156352
this is an article about the latest findings of a study on autism, if you do a search for autism news you can find more articles about the same study too

[Mwills]

That's great thanks again!

[mrky28]

my son has asd and goes to stepping stones 5 days a week for a couple hours a day and it has done wonders.

[kimbey76]

stepping stones is a great facility and the staff are wonderful people, i have dealt with them since before they created the clinic and the qualifications and genuine caring of the people there are a great resource

also of interest to you guys is an article from cnn about a 26 year old autistic woman, and a link to her personal website too

http://www.cnn.com/2007/HEALTH/02/22/autism.emails/index.html

http://ballastexistenz.autistics.org/

[kimbey76]

this is a really interesting article, very informative about autism in canada in particular including the following quoted info:

"Provincial medical plans offer varying levels of coverage for autism therapy. Some will also cover all or part of the cost of intensive ABA and IBI programs.


Alberta pays up to $60,000 a year per child up to age 18 for ABA/IBA programs.
Ontario covers ABA/IBI programs for qualifying children under the age of six — older children are also eligible if an assessment determines they need more treatment.
British Columbia pays up to $20,000 annually for treatment for children up to age six. It pays $6,000 annually for treatment of children six years of age and older.
Nova Scotia pays for an Early Intensive Behaviour Intervention Program. Direct EIBI is provided over the first six months for 15 hours a week, and is gradually reduced over the following six months (10 hours per week for three months and then five to six hours a week for the remaining three months).
P.E.I. covers IBI programs for up to $200 per week.
In New Brunswick, the government will pay for intervention services for a child diagnosed with Autism Spectrum Disorder until the beginning of the school year in the year they turn five.
Manitoba pays up to $6,000 a year for preschoolers for up to 36 hours of ABA treatment a week, with five hours of that treatment provided by the family.
Newfoundland and Labrador will pay up to $40,000 a year per child under the age of six for 30 hours a week of ABA/IBI treatment for two years.
Saskatchewan offers up to 10 hours of therapy under its Autism Early Childhood Therapy Program. In 2006, six children were covered.
Quebec's Autism Action Plan offers 20 hours a week of ABA/IBI therapy for children between the ages of two and five.
The Yukon government pays for ABA/IBI treatment for children up to the age of 19, with no yearly maximum.
The Northwest Territories pays for ABA/IBI treatment for pre-school and school-aged children.
Nunavut has no specific program for children with autism. "

[iluvmnm]

My best friend has 2 boys ages 5 and 3 that have ASD and got fed up with the lack of available resources here so she moved to Alberta last fall. The change in her children is amazing!!, i'm sure due to the amount of support and help that is available out there. I wonder why one province does more than another?

[kimbey76]

not sure why but it is a shame that people have to move away from their family and support systems just to get the funding that they need for their kids, i have a cousin who moved to alberta years ago for the same reason, her son was still quite young, 6 or so i think, anyway last time i saw him he was a teenager and you would not even know he had asd, he was a bit quieter, possibly moodier than the average teenage boy but no outward sign of specifically autism

[CM]

The programs mentioned above for each province are all well and good. But what about when your child is 6 and up? What if they haven't been diagnosed until they are actually already in school like my son. I am fighting tooth and nail to get him any help at all in the school. And I still get the almost daily phone calls, telling me to come and pick him up. Or my son comes home and tells me he spent a good part of the day sitting on a bench in the hallway.
My next course of action is some calls to the school board. I don't feel my son has to be deprived of an education because of something he cannot control.
I am so ticked off lately, and so stressed out. I am relieved it is March Break, I won't cringe when the phone rings now. Sorry for ranting, but it is so frustrating.

[kimbey76]

that is exactly why i wish that the rest of canada would follow Albertas lead and incorporate some sort of specialized program, they do follow children after they are 6, right up until 18 actually and give an amount of funding that will actually pay for the resources you need for your child, things are very specialized there even including schooling for kids with asd. it is a very primitive form of help that we have here in new brunswick compared to there and that is why a lot of people at least think about moving there, i consider the pros and cons myself having two children who are in school. my son only received six months of funding before school and he was lucky, before that there was no special funding for kids with asd, only early intervention and whatever OT, physio and speech the hospital could fit them into. if you need help though with a school age child I would contact the community autism centre here, it is located in woodlawn school and they are awesome at helping out with situations such as yours, they will even attend meetings about your son along with you for added support. They know all the laws and what the school should not be doing and sometimes just having that information from someone who deals with it all the time can be a huge boost.
just an example, i was having problems with my sons school trying to call me every time there was a class field trip saying it would be best for him not to attend and that he could stay at the school or he could stay home with me, they are not allowed to plan class trips that your child cannot attend and must make accommodations for your child. i was so smug when i finally got to tell the vice principal that the school board itself gave me this information as they were telling me that this is how they always dealt with this type of situation, by calling the parent, and that these instructions came to them from the school board.

[Mwills]

Jeeze!!! Are you all trying to scare me? I already cringe when the phone rings because my little one has a lot of other medical problems and I get calls all the time from daycare. I have heard similar stories from other parents of school-aged children with ASD. My son is 3 and a half and is being set up with Stepping stones and just received his funding approval. It really scares me to know that funding drops off the face of the earth once he's 5 years old (who thought that up?)

There needs to be an advocacy group for children with ASD if this kind of thing is happening in our schools.

[kimbey76]

i have heard horror stories about kids in school but i try not to put too much into second hand news, nothing horrible has happened to my kids anyway, nothing i know of at least, really hard since neither one of them could tell me if something was to happen, generally the teachers aids are great and the resource teachers too are awesome

[CM]

I agree the teachers aids are awesome, when they are available. I am being told by my sons school, that without the proper paperwork being filed to the schoolboard for a TA for my son, that there is no funding available. They haven't even filed the paperwork!!! How can they determine this without any feedback from the school board?
kimbey76, my little fella has gone through the same sort of thing with class trips. But they went so far as to not allow him in his own Christmas pageant. We didn't know then that he was ASD, but that is beside the point. What teacher could make that decision and sleep at night? I was livid that day. Went to the classroom where the teacher started to make his pathetic excuses, and grabbed my child and took him home.
I will be contacting the Autism center at Woodlawn, thank you for the heads up on that. I want to know what my sons rights are.

[kimbey76]

good luck, i know they will be able to help a lot, they can tell you exactly who you need to contact and what you need to do about the paperwork for an aid as well, i am not sure exactly how that works since luckily both of my kids were diagnosed before school and the paperwork was all done beforehand but i know they will be able to help you in that area, they have been helping people in similar school situations for years, long before there was funding for kids even

[Rhealsmom]

I understand completely what you are saying CM. We too received the daily calls from the school to come pick up our son as his behaviour was out of control. After 2 or 3 months of picking him up early on a daily basis -- my husband and I had enough and decided that one or the other of us would adjust our work schedules to stay at school with him.

After about 2 weeks - the school board stepped up - and my husband quit his job and was hired by the school system to be our son's teacher's assistant. This was difficult on my husband - but it was what was best for our son at the time. My husband stayed with him for the next 6 years until our son "Graduated" high school - and has stayed with the school system and has now been a TA for 13 years and loves it.

He works primarily with ASD children at the high school level and our son (now almost 29) is home with me through the day. I work evenings, so that daycare is not necessary.

It certainly isn't an easy road - but we wouldn't change anything. Unfortunately, our son didn't have the opportunity for early intervention; but he is healthy, happy and a joy to be around.

[CM]

Wow Rhealsmom, that is the epitomy of sacrifrice. Your husband is to be commended for standing so strongly behind your son. What a wonderful thing for him to do. That just makes me smile reading your post. Unconditional love for sure.