It's official now

iVillage Member
Registered: 03-22-2006
It's official now
18
Sun, 12-31-2006 - 4:15pm

I've posted here a few times in the past here about my son, who will be 6 in March. We had an intensive three day clinic to attend at the beginning of December and he's now been diagnosed with Autism Spectrum Disorder officially, the pediatrician defined his diagnosis as Aspergers verbally but on paper he's ASD. He stims and has intense interests, is cognitively normal and is in the 95th percentile for vocabulary.

The team said it was so hard to get a diagnosis because he appears so normal, brilliant actually with his vocabulary. Which just goes to show how little most doctors actually know about Autism. We've seen a pediatrician in the past who said his stimming was just a 'habit' and we needed to distract him. On the second day of the assessment he started stimming in front of the psychologist which he virtually hasn't done much out of the home in a long, long time. Her assessment was grueling for my son, question after question with no time for him to talk (disaster for my guy, he *needs* to talk, a lot) so in order to cope with the over load he started stimming. I've only ever had digital video on the lap top to show doctors in the past so her seeing the stimming in person really helped show what I see all the time but have had a hard time conveying.

So, here were are. Trying to find a behaviour interventionist if we even need one. I'm not into ABA at all and the BI training seems to be about that type of therapy. We were given a lot of credit by the assessment team for the work my husband and I have put in on our own one on one with our son and would like to continue in the same vein with other therapies.

We will finally qualify for funding to pay for some occupational therapy. The public child development centre ot wouldn't even see him, he's not disabled enough I suppose. She's the only ot for our cdc and whole school district so she's incredibly busy. He stims though, a lot, and I feel it's sensory related.

So, I guess this is my intro, we are in BC, Canada, in the north interior. We live on 10 acres with a few pets that my son adores. The animals really are good therapy for him. He's homeschooled but does a lot of things, like swimming, skiing (lessons in January if he enjoys it), play groups, etc. We are also looking into gymnastics. No siblings.

I'm wondering, do any of you use behaviour interventionists or other therapies like an OT, etc? My son has trouble sharing the conversation sometimes and using 'first and then' seems to help, are there any other tips you have? I am also ordering Writing with Symbols and will try to use PECS for our daily schedule because he likes to focus visually on things.




Edited 12/31/2006 4:30 pm ET by ocarina101

Pages

iVillage Member
Registered: 03-26-2003
Sun, 12-31-2006 - 6:01pm

Welcome to the club that no one wants to join but everyone is awfully nice.

We have used those therapies and others with our 2 ASD kids. My kids are now 10 and 12 and recieve through the schools OT and speech therapy along with some school specific supports. Mike also gets music therapy but not as much as I would like. If I could afford it I would pay private for the music therapy. Cait goes to theraputic horsebackriding as well.

I use the PECS program at home to make visual checklists and schedules. I have also started using the 5-point scale with him. I have writing with symbols and I like it but don't use it as much anymore. It was great for social stories though.

DH and I are both trained behavior specialists(as well as training in other autism type interventions) but we have also used outside behavior specialists for an independent objective input and found it very valuable so long as the person is worth thier salt. It just is not the same when it is your own kid. I also see a therapist myself who specializes in autism and knows various interventions and she is always giving me new ideas as well as keeping my sanity.

Your son is homeschooled so you may not need a educational consultant but we have one we use that is funded through thier qualifications in our state program.

Another intervention we have found helpful is diet and supplements or that who wholistic approach.

Looking forward to hearing from you some more.

Renee

Photobucket
iVillage Member
Registered: 06-25-2003
Sun, 12-31-2006 - 10:03pm

Hello and welcome,


I am glad to welcome you here, but sorry at the same time that you need to be here, -if that make any sense.


You may want to check out local community centers or hospitals to see if they run services for special needs kids. Some may run a social skills group or other activities for special needs kids.


It is also a good way to meet other special needs parents, who may know of other local resources.


If you have an ASA chapter or similar nearby,

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-22-2006
Sun, 12-31-2006 - 11:02pm

Thank you, Renee. I have a few questions. What is a 5-point scale?

Music and horseback riding therapy sounds lovely! I don't know if we have any formal things in place here though. We do get funding from the government for therapies.

It's so hard finding serious therapists or ones that really care. Also, my therapist knows nothing about autism, it would be so nice if she did.

What specifically do you do differently with diet and supplements, if you don't mind me asking?

iVillage Member
Registered: 03-22-2006
Sun, 12-31-2006 - 11:17pm

Hi, Paula, thank you.

We do programs at our local child development centre here otherwise there isn't much as it's such a small town. We do a program called CHAPPS where dog trainers bring their dogs and the kids brush, walk and learn to give commands to the dogs. Also, a play group there.

My son is doing much better with social skills, thankfully. Now that we know why he does the things he does it's much easier to help him in tough situations.

I have lists upon lists of people who have taken behaviour interventist training and are quite willing to spend time with my son for $30 an hour, after one workshop they charge this much. But, I'm willing to pay I just need to find someone I trust and he clicks with.

iVillage Member
Registered: 03-26-2003
Mon, 01-01-2007 - 2:03am

Hello,

We did have music therapy funded through our state agency for a bit over the summer but it wasn't easy and they won't do it during the school year. That is our state though. Music therapy is covered under IDEA but it isn't always the easiest service to access. I don't understand why as there is piles and piles of research as to it efficacy. We were the first in our district to get it for Mike and he has 6 hours of consult per year in class. They have made a dvd for him on anger and do other consulting. Music soothes mike and so we do alot of it on our own through use of his iPod, etc.

The one he got through regional center over the summer began to teach him to play instruments as well as doing social lessons with music. It was very cool but alas they only provided 7 sessions and at $65 a lesson I can't afford it.

The horsebackriding is the one thing we have always paid privately. I do here in other places that some kids are funded through insurance, etc. But mostly not. However, ours is non-profit and they do have scholarships for families who are in dire straights. I want to put Mike in it but I can't afford 2 of them just yet. Maybe next year. It is about $80 a month so $20 a session. Cait volunteers there as well all day on saturday. I consider that therapy as she is learning job skills in a safe understanding environment.

The 5 point scale is a self monitoring tool for behavior and it comes from a book "The incredible 5-Point scale". I posted about it under the title of the bood separately and think I put the link there.

I went to a therapist who didn't get autism at first and didn't care. I stopped going to her and then asked the kids therapist if I could see her because she got it. When I would mention the frustrations because my kids had this struggle or that the initial one gave me the attitude that all kids had problems and then would go into a disertation about her own dd. It was completely different and she had no concept what autism was like or what it was like to be a parent of an SN kid. It was like "parenting is tough, get over it'. Or "they just have to learn to deal with it". She got dumped after 1 session.

As for diet and supps we went on a no or low sugar organic diet and added Omega 3, probiotics and digestive enzymes. There are lots of different diets and supplement alternatives with ASD kids but this is the one that worked for us. For Mike it seems he just cannot process or metabolize what he eats, particularly refined sugars. Plus I just am a crunchy mama and I don't think that all those chemicals and additives will help thier already struggling neurology for many reasons. I was partially crunchy before and now I am pretty darn crunchy but not uber crunchy, lol.

Renee

Photobucket
iVillage Member
Registered: 03-22-2006
Mon, 01-01-2007 - 2:19am

Thank you so much for all that great info, Renee! :)

I am pretty crunchy too. My son eats low sugar, no processed food and organic as well. No pop or juice. He takes vitamins but I should really look into digestive enzymes, I bet they would help. Also, omega 3s dh and I take them but I haven't found it in liquid form for ds.

iVillage Member
Registered: 03-22-2006
Mon, 01-01-2007 - 2:27am
Renee, I can't seem to find the 5 points info. Could be I'm just tired but could you point me in the direction of your post? Thank you. :)
iVillage Member
Registered: 03-26-2003
Mon, 01-01-2007 - 11:36am

Coromega makes a pudding like form that is orange flavored adn I hear quite good. My MIL tries to convince me that carlson's makes a liquid that isn't disgusting, lol.

Nordic Naturals makes I think some chewables. They also make kid sized capsules that are flavored strawberry I think.

Renee ( who once again is glad my kids are great pill takers)

Photobucket
iVillage Member
Registered: 03-26-2003
Mon, 01-01-2007 - 11:37am

Just bumped it up.

The link wasn't in the first post of the thread like I thought so I just added it to the last post.




Edited 1/1/2007 11:40 am ET by rbear4
Photobucket
iVillage Member
Registered: 03-22-2006
Mon, 01-01-2007 - 12:36pm
Thank you, Renee!

Pages