Developmental disorders/learning disabilities/genetic syndromes & more support group

[essie0828]

Thomas was referred for speech therapy at 17 months and started at about 20 months. Good luck bumping x

We were also told he has hearing loss in both ears alongside glue ear. Why didn't anyone tell me!

Did they recommend aids or treatment for him? Hearing properly might really make a difference. It can affect so many things - my friends 6yo was diagnosed with a learning delay/disability and after a year they found that his hearing was severely affected on one side and moderately on the other. He made HUGE improvements in several areas once it was treated. Seems crazy that they didn't mention it!

I second this. Hayley has made a vast improvement in her hearing and speech since getting the fluid drained from her ears and tubes put in. She also had moderate to severe hearing loss on her right side and inconclusive results on her left. The doctors told us that the ear will most likely repair itself over the next year and her hearing will continue to improve. Thomas is still young, it's so very likely that they can restore his hearing. Then be prepared for the new sounds and words .

 

[essie0828]

Hi to everyone!

Lots going on here as well. My uncle is having open heart surgery Friday, Hayley isn't sleeping and it's general chaos. Blah. Hayleys therapies are getting demanding, each has it's own set of goals for us to accomplish each week. She sees 5 therapists! It's a lot some days. Ok that's my mini update. Hope to have a proper positive one soon .

Loving reading everyone's posts. to all. Ok I'm exhausted and its nap time. See ya

 

[aliss]

Also has anyone had their child assessed by a child psychologist? We just got a call for a referral next month and the appointment is 2h long! Not sure what they will be assessing or doing there.

We had one two weeks ago here in QC, it was over two hours and basically we went through a million questions (from the DSM) and many questions they asked for elaboration. We actually just went me and OH, and then the follow-up is Monday with Alex.

Bill was $525

 

[sequeena]

Ouch that's a big bill

Good luck to your uncle essie poor hayley tThomas has had a lot this week - hv and sleep clinic consultation monday, cast off Tuesday, paediatrician yesterday, speech therapy and a blood test today and portage tomorrow and it's a lot for him.

Sean had his endoscopies today. They didn't sedate him so he wasn't happy. Turns out he has a n acid reflux disease and a valve in his intestines/bowels won't close fully and it lets gas out. Doctor says IBS.

We waited at the hospital for Sean and I had a phone call from Thomas' paediatrician. She was going to send the blood test forms in the post but as I was there I picked them up and Thomas had his blood test. He didn't feel the needle thankfully but did cry at the end as his arm took a while to stop bleeding. I also need to get a urine sample from him lol.

One thing my paediatrician did say is that Thomas' ears are lower than is normal and his eyes are deep set. She was reluctant to say more though. Sigh

 

[Tiff]

Aliss! You know you can get reimbursed for that, right?

Sorry I haven't been in here much lately. I find it hard at times, I love the support but when I feel overwhelmed with all of Claire's issues its hard for me to come on here and give support to other people... I also don't want to be that person that just comes on and whines about my own life and not bother with anyone elses.

But I think of all you ladies often and your gorgeous little kiddos.

 

[Tiff]

hopefully a sleep study will help you all get some sleep

we start speech therapy December 5th

Wow at only 18mo! Can I ask what province you're in? Where I am it's a pretty long wait (like 9-12mo) from the point where they are first concerned, so most people we know started at 2.5 or so. We were in at 20mo, but B couldn't move his mouth properly or make sounds.

the wait list here is about 9 months. I had him put on the list before we had an identified issue. ( because I'm one of those crazy mama's) I had him assessed at 10 months because I was concerned about his development and our early intervention coordinator suggested getting him on the list, just in case. so I'm really glad I did it back then I'm in nova Scotia!


sequeena, I would think she has T confused with someone else. it seems odd that no one has mentioned this to you before...

You must not be in Ontario!

Claire was flagged at her 2 year well baby check up. She got diagnosed (with help from our early intervention team) a month before she turned 3. We've been on the waitlist for ABA therapy/Speech Therapy since she was 2 and it'll start in February at the latest. She'll be FIVE in December.

I cannot believe the waitimes for this province.

 

[sun]

Aliss - OUCH! $525! Yes I hope as Tiff says you can get reimbursed! Our appointment isn't private so we won't be paying. Not sure how it works in PQ though.

Tiff - What?? That is a HUGE wait! Absolutely the longest I've heard of by at least double! Completely unacceptable I've heard 1-2years, but never that long. That's so crappy that you've had to wait so long. Now I feel extra lucky we got in when we did.

Sequeena - That sounds like a long week for poor T! Also I hate it when the docs are cryptic about their questions and comments I would much rather get an idea for what they're thinking than come home and google everything and freak out! xox

 

[aliss]

Yup we can thanks!!! But it's still a hard hit until the paperwork goes through private insurance. We are skipping the public system as the wait is still 24 months here in QC, I need an English-speaking team and they are very rare where we live

 

[sun]

Yup we can thanks!!! But it's still a hard hit until the paperwork goes through private insurance. We are skipping the public system as the wait is still 24 months here in QC, I need an English-speaking team and they are very rare where we live

Are you still planning a move out west?

 

[aliss]

Yup we can thanks!!! But it's still a hard hit until the paperwork goes through private insurance. We are skipping the public system as the wait is still 24 months here in QC, I need an English-speaking team and they are very rare where we live

Are you still planning a move out west?

I wish I wish, but it's quite a wait as OH has a gov't job and they are so reluctant to transfer him out of here as he speaks English very well Friggin politics. I'm off to go join the PQ or Bloc and start my own referendum, then we'll get pulled out! The first Anglo in the Bloc!!!!

 

[sun]

Yup we can thanks!!! But it's still a hard hit until the paperwork goes through private insurance. We are skipping the public system as the wait is still 24 months here in QC, I need an English-speaking team and they are very rare where we live

Are you still planning a move out west?

I wish I wish, but it's quite a wait as OH has a gov't job and they are so reluctant to transfer him out of here as he speaks English very well Friggin politics. I'm off to go join the PQ or Bloc and start my own referendum, then we'll get pulled out! The first Anglo in the Bloc!!!!

 

[bumpin2012]

hopefully a sleep study will help you all get some sleep

we start speech therapy December 5th

Wow at only 18mo! Can I ask what province you're in? Where I am it's a pretty long wait (like 9-12mo) from the point where they are first concerned, so most people we know started at 2.5 or so. We were in at 20mo, but B couldn't move his mouth properly or make sounds.

the wait list here is about 9 months. I had him put on the list before we had an identified issue. ( because I'm one of those crazy mama's) I had him assessed at 10 months because I was concerned about his development and our early intervention coordinator suggested getting him on the list, just in case. so I'm really glad I did it back then I'm in nova Scotia!


sequeena, I would think she has T confused with someone else. it seems odd that no one has mentioned this to you before...

You must not be in Ontario!

Claire was flagged at her 2 year well baby check up. She got diagnosed (with help from our early intervention team) a month before she turned 3. We've been on the waitlist for ABA therapy/Speech Therapy since she was 2 and it'll start in February at the latest. She'll be FIVE in December.

I cannot believe the waitimes for this province.

I have no doubt that if I had listened to our GP when she insisted I had nothing to worry about that we wouldn't be seen until closer to age 3. I made all my own referrals where I could, before we had a clear issue. we still don't have a definitive diagnosis, only a theory to explain his delays. because I have us seeing an ENT Dr at the children's hospital, I got him too make the pediatric referral, getting us in MUCH faster than if I pressed my gp.

it's insane how long the wait times are. it's about a full year for a developmental assessment here!

 

[Tiff]

Sun - I know, right? To be fair, the city I live in has exploded population wise... when I moved here in '99 it was 90,000 people... in 5 years it became 125,000 people and now its 135,000 people. It just grew far too fast for the services to keep up. There's a doctor shortage and most you speak to don't have a family physician. So it makes sense, but sucks for my poor kiddo. :/

I watched this video on FB and waittimes for children with Autism to get supports/therapies in place, I believe the shortest wait is actually in Alberta... 2 months!! Crazy and unheard of here!

 

[essie0828]

Tiff even here in the States the wait times for autistic kids seem longer. They are diagnosed later and treated later. At the outpatient therapy we attend a lot of the new kids are autistic and they are much older than DD. The youngest I have personally seen there being treated for autism was 3. That's a shame I think.

 

[RachA]

Sun-Esther's been referred to a psychologist (can't remember the type you said but it's the same type that Esther's referred to). I don't know anything about the process though. Esther's having to see them as part of the process to get a statement of educational needs.



We've been to see all the schools for Esther now and we're still no clearer on where she should go. They all have good and bad points. I just wish the decision didn't lie with us. But then if it didn't I'd probably wish it did lol.

 

[essie0828]

Hooray for Esther going to mainstream school I really hope she enjoys it and they offer her any help she needs. I'm sure you will make the right decision for her.

 

[essie0828]

I just got Hayleys appointment in for a large regional children's hospital in a neighboring state. January 27th we will go to the CP Clinic there. It will be a long distance to travel but she will only have to go there a few times a yr. They will coordinate all her care remotely, working with her current therapists, and give us access to state of the art adaptive equipment. There are no pediatric CP specialists in our state! Grr. But this place is the #3 children's hospital in the nation and they have 3 And my uncle made it out of surgery and is off the ventilator.He's grumpy and groggy but himself enough to tell everyone to go home and sleep. My mom and grandma have been there for 2 days. They are exhausted. He had a heart defect and 36 years ago to save his life they put in a mechanical valve. You could hear it if you stood close to him, sounded like a clock ticking but it was his heart. He won't tick anymore as he now has a quiet animal valve. Besides being wore out it's been a good day.

 

[sequeena]

Oh that is such great news for hayley and your uncle!

Sean and I have decided against attending sleep clinic. We don't feel it's going to help seeing as Thomas has additional needs.

 

[essie0828]

Oh that is such great news for hayley and your uncle!

Sean and I have decided against attending sleep clinic. We don't feel it's going to help seeing as Thomas has additional needs.

What would they even be doing at sleep clinic?? Here the OTs work on sleep behavior with special needs kids and T already has OT. I think if you address his sleep issues with the OT they will help tons.

 

[sequeena]

It will be CIO based. He wouldn't have any comforts because they don't use 'props'.

We will be going down the OT route. I don't know why it wasn't suggested to us before to be honest