This new role, of parents of an autistis child came on us really quickly. Our pediatrician felt that we should intervene sooner than later, and referred us to an awful lot of services. So for the first whirlwind couple of monts, I was spending almost all my time on applications, paperwork, appointments, and his special needs playgroup. Now, the paper work is sent in, and the applications are completed.

So, here we are. We are on the waiting list for speech therapy, Early Intervention (We just found out the the interventionist is on personal leave, so our 2 month wait is now 5)and speech therapy. Our application for Services in the home is still in process, and he doesn't start school until September. We've been rejected for OT 3 times now, because they say he's too old. Ot's go private, or get nothing. And now, his playgroup is on break for 4 weeks. I feel like we're doing nothing. We just wait.

Somedays it's hard to keep my head up. He matters so much to me, but to them he's a name on a list. Have you guys been here? I just feel a little down.

Suzy

cheer up suzy! all is not lost! and all of that other B.S. and blah blah blah.:) guess i'm feeling a little crappy too!

no you are not alone out there in services limbo. we had a different problem with our son though. when he was 2 he started getting services for a very vague condition that no one was willing to define for us... it took us a year and a half to finally get someone to be straight with us and we got our son diagnosed with autism... it took another year for them to be straight with us at the severity of it and he is what is considered to be that "autism use to be" meaning that he is so severe that at this time the best we can hope for is to teach him some self care skills and teach him how to occupy his time.... ofcourse this doesnt mean he is stupid but just that he cant reach out of his world long enough to deal with ours so... here we are. if everyone had been willing to speak up when he was younger and if we had said, hey this isnt working whats going on, then he may have been better off today.

so you doctor is right! do it now. the paperwork sucks, and waiting is worse but you are on your way. until then repetition and consistancy are very important. set up a routine for him and do things the same way everyday so that he has something that he can expect and know whats expected of him. also if you dont already have a case manager or advocate for your son look into one. it helps to have someone arguing for you that the service providers are going to repect a little more. AND!:) if you havent already found one see if there is a local autism support group. we have learned a ton about local services and how to manipulate the system from parents who have been around the administrative and beurocratic blocks a time or two.

as far as my crappy day goes... well i have been watching my 3 month old and either i am getting paranoid or something (i hope!) but he is beginning to act a little like my autisic son when he was that age:( so hopefully i am just crazy because with isaac that way he is and my husband not being to far behind that;) i want someone on my side!:)

do keep your head up though... things will come around even if you have to twist an arm or two to make them.

Hi Suzy,
I feel like we're doing nothing. We just wait. ... He matters so much to me, but to them he's a name on a list.
There are lots of things you are already doing as a parent that are helping your son, I'll bet. You shelter him, love him, clothe & feed him, interact with him, integrate him into your family activities, just as you did before the dx. ALL of these simple things continue to contribute to your child's well-being & development. They provide a strong foundation for the intervention that is to come. Don't put too much emphasis on the intervention. Without the foundation you give, it is NOTHING.

Find a support group like Liz suggested. Toronto is a big place -- I'll bet there are a number of different support groups to choose from. Just as you may have learned a few things by trolling healthboards, you'll also learn stufff you wouldn't expect by attending support groups. And the local flavor/info is esp. helpful in negotiating red tape.

If you want OT for your child, you may be able to find other parents w/kids at a similar level of functioning, and go together to form a small "OT group," hiring a private therapist, splitting the cost. There are all sorts of ways to support each other. In my town, the support group itself has a "game time" social group for older kids on the spectrum ... parents of younger kids also come so that they can socialize together.

Don't buy into the idea that 'only pros can touch it.' Sadly, many parents do, but language intervention, improving self-help skills, and sensory integration development have more in common with parenting than they do with brain surgery! In other words, a lot of therapies for autistic kids are special spins on the sorts of things parents normally do anyway.

Knowledge is Power! I firmly believe it. There are so many options out there today that can help our kids on the spectrum. There are many things that you can learn or try, as a parent, to help your child. Maybe not everything will you try will be successful, but quite likely something you try will be! I know you're not twiddling your thumbs while you are waiting for those appts w/the pros, but in the meantime, you can choose to develop your knowledge/power base by reading, if you wish. Here's a link to an ongoing thread on this healthboard, where people have posted about books on autism: http://www.healthboards.com/boards/showthread.php?t=375394&highlight=books

There is a sort of anxiety that sets in between the dx & treatment that many of us are familiar with. Learning/doing/trying in that interim alleviates anxiety (for me it was guilt, as well), and builds your confidence as a parent of a special child. It can even add efficiency to your child's pro intervention, once that is on board.

A few other thoughts. Look into University programs (speech, OT,psychology, special ed), as they often have clinics staffed by upper level students doing required supervised practicums. U of T has a great reputation. At colleges you may also find undergrad students (look in the same disciplines), who will do "volunteer work" with a child in order to get a ref. on their resume.

And remember to ask about cancellation lists at each place you are waiting.

Good luck!

Hi guys, thanks for listening. It's just been such a bad week. I think as long as I was keeping busy persuing services, I didn't actually have to think too much about what all of this really maens in his life.
Liz, thanks for the kind words. We are really lucky that Liam has speech, sometimes it is the difference between making it through another day, or not.Today he ran down the hall, singing 'Mummy!!'. It was great. I understand your concerns with the baby. My girl just turned one and I'm just starting to believe that shes typical. This week she started talking, like 6 or 7 words. She also is totally in love with the baby doll we got her for her birthady. She carries it around and kisses it. I think she'll be just fine.
We have a resourse teacher at the Early Years Centre who has been co-ordinating everything with us. She's amazing. Last night, she just listened, while I vented for an easy half hour. I was so upset because Liam had a major meltdown at the family drop-in, and I had to leave after he tried to beat up one of the ECE's. Luckily, she's known him since he was an infant, and she was fine. But now, I am so scared to try the normal drop-in again. He got set off, because a little girl screeched in his face and started pushing him when he took her train. He was so freaked out that it took us 10 minutes to calm him while all of the other parents just stared. I don't know if I want to venture into there again.

To Elmhar, thank you so much for the kind words. I don't really know where to even start looking for support groups. But, I will start looking. I've been doing reading, Building Bridges through Sensory Integration, and Overcoming Autism. I've also gone to a few OT seminars. I like to stay busy. We've also been trying a weighted vest, and a sensory activity bag, both of which, we made ourselves. The vest has had some great results for us, he rarely burrows in the sofa cushions anymore. I've also bought a strap-in booster that seems to help him stay at the table. We will keep the process of trial and error going. Believe me, at this point it's alot of trial, and even more error.

Thanks to all who just listened.

Suzy

Suzy,

Sounds like you have already gone above & beyond the call of duty & needed little advice from anyone! I'll bet you could even teach us a thing or two!

To find support groups: try the local paper, sometimes support groups are listed on a certain day of the week. Call or visit your local public library & ask a reference librarian. It's common for ref. depts to keep a "community information & referral list," that may have the name of contacts for various groups. Try your pediatrician's office. Call children's hospitals & clinics. Call government agencies. Search online by your community. You never know what you'll pull up.

Good luck!

(((Suzy)))

I agree with the others. Don't buy what the so-called professionals say. You are the best person to help your child. Good luck to you.