April 7th, 2005, 02:15 PM
teh doctor who started the ball rolling to have my son evaluated for autism just called[well his nurse did] anyhow, he has spoken to the other doctor who was doing an acessment and they want to see Issac on monday.
heres hoping I can finally get help for my baby!
April 7th, 2005, 02:19 PM
Good luck and god bless your family and baby Issac.
I hope all goes well, and Issac gets the help he needs.
Keep us posted. ((((((((((Eleni and Issac))))))))))
April 7th, 2005, 02:21 PM
Eleni, I had no idea you were facing such a challenge. My prayers go out to you and your son.
It's national autism week here in the states, by the way.
Best of luck, and I hope he gets the help he deserves.
April 7th, 2005, 02:23 PM
Best of luck to you and Issac to get the proper diagnosis, help and treatment he needs! :grouphug:
April 7th, 2005, 02:28 PM
yeah its kinda nerve wracking,
we have been in limbo for 6 months or more now, it seemed everyone was making an acessment and either telling me nothing is wrong, or telling me something is seriously wrong. no one was actually telling me look this is what we are facing and telling me what I can do.
im excited and worried, I dont want to go in and them just tell me they dont know what to do, or to wait and see if his development catches up when i know in my heart of hearts soemthing is wrong with my son.
I cant begin to say the nights ive been up worrying about it all.
im jsut hoping for some progress so we can move forward and help him.
April 7th, 2005, 03:06 PM
Oh Eleni i hope you get the news you have been looking for sometimes it is better to have bad news than no news. At least that way you can start to treat and fix it. I worked with two twin girls that had that. They were both pretty bad though. You and your son are in my thoughts and prayers. :grouphug:
April 11th, 2005, 08:42 PM
well not much of an update im afraid,
Issac is being referred to a developmental pediatrition, who will deal with another team of speachtherapists/occupational therapists etc.
so we are going thru the acessment process yet once again.
im incredibly frustrated but its a necessary process to get him the help he needs
April 11th, 2005, 08:59 PM
Eleni, after six long months, your frustration at yet another delay is certainly understandable. :sad: You must feel like you are on a merry-go-round of referrals and red tape.
I hope this assessment will take place soon, and at last provide the answers and the help you are seeking for your child. You will both be in my thoughts and prayers :grouphug: and I send my best wishes.
April 11th, 2005, 09:59 PM
DANGIT! How frustrating. Still no answers :mad: .
Thanks for the update, and sorry you and Isaak are still being shuffled around.....
April 11th, 2005, 11:30 PM
If I were you, I'd ask to see a specialist in autism. We have Chair in Autism at our hospital and university. (The pediatrician who holds it works ONLY in that field).
April 12th, 2005, 07:45 AM
is that the type of situation where Issac would need a referral? or is it something I could call and tell them whats up and book him an appointment?
this is the frustration, getting thru the referrals the family doc sends him on till we get to the right dctor to help Issac
April 12th, 2005, 09:47 AM
My son has been waiting for his assessment for almost a year.He goes for his assessment June 9th with Montreal Childrens Autism spectrum clinic. I joined an msn forum, it is called BBB Autism Support Network. I strongly suggest you join!They have so many members from Ontario that could help you.The moms and dads have been through all of what you will have to endure and thier advise , recommendations and support are a godsend.You are the mom and your instincts are not wrong! Do not let any Dr.s or anyone else deter you from getting what you want and is needed for your son.You will be his biggest ally and his loudest voice.
The waiting lists for assessment in Ontario are longggg. Unfortunately this is something you need to get used to,as well as answering huge questionaires over and over and over......
Good luck to you and I really hope you join BBB they will help you so much not just with info but also a great place to ask any and all questions and vent!!!!
April 12th, 2005, 04:32 PM
By far, the best advice I can give you is to research yourself. I know doctors are supposed to be able to give you great advice but the fact is GP's especially are like travel agents - they refer you to people based on their experience and who they know. Some are good, some not so good - like everything else.
That said, find the closest and best autism specialist - if you think that is the main problem - and get the specific name and co-ordinates. Bring them to your family doctor or pediatrician and ask to be referred to that individual.
The only autism chair in Canada is actually in Halifax though there are clinics elsewhere. The doc in Halifax is a psychologist - Dr. Susan Bryson - she came to Dal from Sick Kids. She does have an entire team though, including peditaricians.
Ontario is just now seeking to establish a Chair. It may take a year before they even award the money to one university.
There are also controversies in the treatment of autism - what works best, what does not. I am a member of our govt's advisory group on Disabilities so get a plethora of info I do not always have time to read. But I do know that you as a parent need to find the best person and program for your child and have your GP refer you to him/her. Then call everyone you know to move up the waiting list. Hospital Board members, politicians, people who work in the medical field that you know.
We have a truly great system but a parent (and a patient) has to lobby, lobby and rsearch, research, research. I much prefer to talk to a patient who will even challenge me (I know some docs are not like that and think they are God :p but I discovered some time ago I am not perfect, lol) You cannot afford to be passive and sit back - you need to make sure you and your child are seen asap.
And question everyone - even other parents who claim the program they use works the best. Verify EVERYTHING!
April 12th, 2005, 05:26 PM
Eleni,best of luck to you and Issac :love:
I had two sick sons myself and the best you can do is be informed,research and more research,push and shove to get your son the help he needs and yourself the answers you need.
I wish I had had the help of the Internet and the info available today,my sons were luckily treated very well,but I would have benefitted from more knowledge.