New Here

Post Reply New Topic

Hi everyone, I'm cutiecrystalmom (my son's nickname for me). We live in BC Canada and we are trying to get an accurate diagnosis for our 8.5 year old son. We have known for many years that he is a bit different than other kids - I like to say he thinks just a quarter turn different from everyone else, which can be an amazing experience but as you all know, can work against him too.

We took him for a private autism assessment at age 7. We decided we'd probably better pursue one when while vacationing on a beach, he got the most enjoyment when he was jumping/flapping while watching people play in the water. He has an insane amount of sensory issues, is very one-sided with his conversations, has difficulty with eye contact, delayed social skills and emotional immaturity, anxiety, and the list goes on.

Well, wouldn't you know it, he is also very good at presenting with no issues during formal testing. Thus, no diagnosis. However the summary indicated characteristics all found on the spectrum, and the recommendations were similar to what would be given for children on the spectrum.

Of course, no diagnosis means no designation, which means no support in school where he gets overwhelmed/frustrated/depressed quite easily and as a result shuts down and refuses to participate/complete his work. It was a tough year where I had nothing to back up my assertions that my child was NOT in fact naughty but actually had some real underlying issues affecting his behavior and performance. I'm pretty sure I had an ulcer by the end of the year.

Fast forward to present (1.5 years later) and the pediatrician wants him re-screened for the spectrum. The wait list for the publicly funded screening facility is at least one year long In the meantime, I have made alot of noise within the school and hopefully this might lead to extra support next year. But their hands are really tied because he is not designated, so to bypass that and receive TA time is going to be difficult. I think I am up for the challenge...maybe? probably. We took him for an OT consult to address his sensory issues and are participating in weekly OT sessions. I continue to advocate for him within the school system to try and get him the support he (and his teacher!) needs.

I guess I am wondering if there are any other parents out there who have had similar experiences or maybe who could encourage me along the way? I get so exhausted sometimes with repeating the same things over and over and researching / fighting for options for my son. He really is an amazing child, with such a good heart, I hate to see him so defeated with school (last year really impacted his self esteem, and sadly, it was mostly the teacher who was the culprit).

I am so thankful I found this forum and have marvelled at the support on this board already.

cutiecrystalmom

I can't help you much because I'm not in Canada, but I know that parents world round are stuck fighting to get their children the designations and services / accommodations they need. We actually have been extremely lucky in all that, but I have read enough to know to count myself lucky.

Best of luck to you. Things will happen; becaue you'll make sure of it

Welcome to the board! I am fairly new to hear as well so i can;t bring much experiance. But I am in Canada as well and can relate to the long waiting lists!
Private care isn't always better and I know the waiting is so hard, but you will probably be very happy with the care you get once you are in. Also, nothing is stopping you from calling every so often to see where you are on the list. I did that with my son and we ended up getting any appointment 2 weeks later!

I also feel your pain with school. My son was first seen by a Tourette's specialist who felt right away that he had Asperger's without even doing any tests. Sadly even the specialist told me we wont get help with my son at school unless he has Asperger's, so we went ahead with the testing and although mild he has it enough to warrent getting some help with school. We are hoping next year will be better for him.

Thanks for the replies DW and DoriansMom It's been an overwhelming process for me, but I am thankful that I have the energy to keep pursuing on. At least I feel like we have a few things coming our way that will help us, although it is hard to be patient and allow time for things to happen

cutiecrystalmom