Comment

Comment by Shane Kelly on June 21, 2012 at 3:35pm

Thank you for the response, mr. poutine.  I know how you feel about the religion thing, I have searched for support only to find that the only "support" most people have to offer is "trust in god," or "god does not give us more than we can handle."  What nonsense.

Comment by Godless Poutine on May 21, 2012 at 4:05pm

Hi Shane!

Welcome to the group!  I hope it will make things a little less scary and make you feel a little less alone.  Good luck and take care of yourself too!

We read about angelman syndrome while trying to figure out what was wrong with our son.  So far my son was just diagnosed as being on the "spectrum" with ASD but not quite at the level to be considered autistic.  But nobody really seems to have answers. My parents have yet to fully digest the news and they are currently in denial.  I'm hoping they won't start feeding me lines about religion when they do finally clue in. 

Comment by Shane Kelly on May 21, 2012 at 9:05am

Hello all, I have a three year old son with angelman syndrome.  He is just now getting the hang of walking, and cognitively is around 10 months.  He has multiple delays, hypotonia, doesn't eat solids, is non-verbal, and will require life-long care.  I feel fortunate to have found this group!

Comment by Godless Poutine on April 19, 2012 at 7:45pm

Thanks so much PW!  We're getting him the "ADOS" test on the 27th which is 1/2 of the gold standard test here in Quebec.  If he is diagnosed, then the least we can do is get government aid and therapy.

Comment by Jedi Wanderer on April 19, 2012 at 4:53pm

Hey GP, my son was very similar. A lot of lining things up, a lot of headbutting, and he still doesn't talk very much at all. It is scary. And the worst thing is not knowing what he's got. Maybe its autism, maybe its PDD (pervasive development disability), and in either case there's no cure. If your son (and boys seem far more prone to getting autism than girls) does have something like this, get him diagnosed early, so you can start getting him the therapy he needs. He can get special services and show a lot of improvement, and the earlier you get started the better long-term results you will have. Good luck!

Comment by Godless Poutine on April 19, 2012 at 3:24pm

Hi All,

I've got a 2 1/2 yr old boy who's just wonderful, but he's exhibiting signs of being autistic (stimming, stacking, lining things up, verbal delay,banging his head into us constantly).  We're going to get him tested but it's still scary.  Even if he doesn't have autism, he's got something and part of the issue is doctors and people keep telling us there is nothing to worry about when we know otherwise.

Comment by Jim Mo. on April 9, 2011 at 5:24pm

I was able to see "Wretches and Jabberers" in a theatre on April 2, 2011. Having a 12-year-old son on the spectrum, the film moved me in ways that were beyond my expectations. It is not a film about Autism being cured. It is a film about finding the inner lives of autistics and their struggles to communicate. The film brought me to tears. I highly recommend it to those facing the struggle of caring for ASD individuals.

Comment by Jedi Wanderer on January 10, 2011 at 4:07pm

I have a 4 year old son with what is thought to be PDD (pervasive developmental disorder). It is like Autism, with some differences. He has two younger brothers who are perfectly healthy. They talk and play and socialize expertly, while the oldest hardly speaks at all. When he does speak it is only the names of animals, and not well. He was receiving speech therapy and ABA when he was about 3, and it had seemed to be working somewhat as he had started speaking more and more, but we had to leave the country for my wife's job in Saudi Arabia and with no services there his language began to slip away. He is also very private and has some aggression problems. He fights with his brothers often for no reason and even took to biting and hair pulling occasionally. We are now back in the states since November, but he hasn't been receiving help because according to state law the school has 20 days to begin evaluation and then another 90 days to finish evaluation. Meanwhile his condition continues to deteriorate. He has a final evaluation at the end of this month (January), and is due to begin receiving services in February. I wish I knew why they couldn't start giving him services when we got here and worked out the evaluation process as they went along. My wife will have to leave to go back to Saudi Arabia in a few days, leaving me with all 3 boys and no help from any family or friends. I think I will be able to manage, but its tough.

 

Has anyone else had any experience with PDD? I feel like it is probably caused more by environmental factors than genetic, more so than Autism is (but I'm just guessing). I also feel like there isn't nearly enough research into either the causes or the treatments of these diseases.

Comment by Becky Williamson on August 26, 2010 at 3:27am

I have a 6 year old son who has Jarcho-Levin syndrome aka spondylocostatal dysplasia. This means he has severe scholiosis and malformed ribs. Basicly he doesn't have room in his chest for his lungs to grow. There's lots of side effects but the list is so long I would probably take up a whole page listing them. I just wanted to know if anyone on here has a child with this or something similar.

Comment by Gwen on September 25, 2009 at 5:31am

My brother definately livens our days! He is very loving, and his interpretations of life are usually an 'out of the mouth of babes' moments!

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