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

[Starry Night]

It's getting a bit late and I'm getting sick of the computer but just thought I'd check in.

We're doing OK and DS has been happier lately (and sleeping better!). There had been a lot of the grumpies this summer which I think was more toddler than autism but still frustrating!

And even though he doesn't start school until next year, the school year has really brought on the onslaught of therapy programs. The calendar is filling fast! Also driving into the city for seminars on the RDI therapy. Very interesting and also challenging way to think about approaching ASD.

I'm most excited about getting into a swim program we had registered for ages ago. We had been put on the wait list but a last-minute spot opened up and we start this week. It's one-on-one swim lessons for special needs' kids and they only charge $20 for 10 lessons. There is more to it than just swimming. They have social events and camps, etc. So thrilled to be in.

 

[Thurinius]

Sigh.
just met with special needs coordinator at my son's school.
They didn't get funding for him to have a one to one helper.

 

[sequeena]

Starry it sounds like things are going well!!

Thurinius did they not bother to get funding or were they turned down?

Thomas had his yearly paediatrcian appointment on Tuesday. Now he's 4 they don't do the ruth griffith assessment anymore. She said he is still delayed and younger mentally. It was quite frustrating. I know he is still delayed but I'd like to know where he is. Hopefully the report she sends me will have more information. She will see him in a year. Her job is done really he has all his referrals. The most interesting part was when she measured his height he is 108.5cm Now (91st centile).

Yesterday he had a dentist appointment. His teeth are perfect he came home from school with a sticker because he took a small sip from an open cup and he didn't push at play time. I am so pleased

 

[Thurinius]

They applied for funding and got turned down.
I do wonder if it's because he doesn't have behavioural issues. He's the placid/passive type of autistic.

Pretty upset about it. I know these are the years that will make the most difference to whether he is a functioning adult.
if I hadn't paid for speech therapy he wouldn't have had any for these last ten months.

 

[sequeena]

Wow. That sounds completely ridiculous. I would complain like hell. He has additional needs He should be supported.

 

[Starry Night]

That sucks about the funding. Funding is a huge issue over here as well. I really would like a one on one for my son as well mainly because he tends to wander and bolt. But like your little guy, he is otherwise more the passive/friendly type of autistic kid. No way will we qualify for the top funding. I just hope we get some. It seems so unfair. With autism so common these days you'd think there would be more support.

Our government funds therapy up until kindergarten so if we don't get funding I don't know what we'll do about speech or occupational therapy. Private costs about $100 an hour.

 

[shirlls]

Hi everyone, I just found this thread.

I live in Glasgow (UK) and have a 3 year old son and 11 month old twin girls. My son was diagnosed with Gross Developmental Delay at just over a year old as he wasn't sitting up and he is very hypotonic around his core and has the 'most hypermobile joints that the paediatrician has ever seen' apparently. He started sitting up unsupported at 17 months, and started walking just 3 months ago at 2 years and 11 months.

His walking is coming on great and he is getting stronger every day although still unable to walk long distances and is prone to falling over a lot. He also has speech delay and only says words and very short sentences but can't fully converse yet. He displays some traits of autism however has excellent social interaction skills and is full of cuddles, with eye contact and a desire to be sociable. He is awaiting autism screening which we have been told will begin at the start of next year.

My twin daughters (11 months) are hitting their milestones so I am hopeful they aren't delayed as it has been a stressful ride with my son. I know it's wrong but I often feel bitter and jealous about my son having delays and possibly being autistic, when I say jealous, I mean jealous of all the people I know whose children met all their milestones. I am in no way ashamed of it but I'm fed up of coming out of appointments with patronising specialists feeling sad that my son might not be able to do what other children can, and wondering what the future holds as nobody seems to know.

 

[alibaba24]

Hi everyone, I just found this thread.

I live in Glasgow (UK) and have a 3 year old son and 11 month old twin girls. My son was diagnosed with Gross Developmental Delay at just over a year old as he wasn't sitting up and he is very hypotonic around his core and has the 'most hypermobile joints that the paediatrician has ever seen' apparently. He started sitting up unsupported at 17 months, and started walking just 3 months ago at 2 years and 11 months.

His walking is coming on great and he is getting stronger every day although still unable to walk long distances and is prone to falling over a lot. He also has speech delay and only says words and very short sentences but can't fully converse yet. He displays some traits of autism however has excellent social interaction skills and is full of cuddles, with eye contact and a desire to be sociable. He is awaiting autism screening which we have been told will begin at the start of next year.

My twin daughters (11 months) are hitting their milestones so I am hopeful they aren't delayed as it has been a stressful ride with my son. I know it's wrong but I often feel bitter and jealous about my son having delays and possibly being autistic, when I say jealous, I mean jealous of all the people I know whose children met all their milestones. I am in no way ashamed of it but I'm fed up of coming out of appointments with patronising specialists feeling sad that my son might not be able to do what other children can, and wondering what the future holds as nobody seems to know.

Hi. I am from Edinburgh my daughter met all her physical milestones but she has a language disorder I often feel a pang of sadness when I hear other 5 year olds conversing beautifully and wish my daughter did not have these problems. Try not to feel bad about natural feelings. No mother wants to see their child struggle in any circumstance. I know its hard but I just try think of the positives x

 

[Reid]

Hi everyone, I just found this thread.

I live in Glasgow (UK) and have a 3 year old son and 11 month old twin girls. My son was diagnosed with Gross Developmental Delay at just over a year old as he wasn't sitting up and he is very hypotonic around his core and has the 'most hypermobile joints that the paediatrician has ever seen' apparently. He started sitting up unsupported at 17 months, and started walking just 3 months ago at 2 years and 11 months.

His walking is coming on great and he is getting stronger every day although still unable to walk long distances and is prone to falling over a lot. He also has speech delay and only says words and very short sentences but can't fully converse yet. He displays some traits of autism however has excellent social interaction skills and is full of cuddles, with eye contact and a desire to be sociable. He is awaiting autism screening which we have been told will begin at the start of next year.

My twin daughters (11 months) are hitting their milestones so I am hopeful they aren't delayed as it has been a stressful ride with my son. I know it's wrong but I often feel bitter and jealous about my son having delays and possibly being autistic, when I say jealous, I mean jealous of all the people I know whose children met all their milestones. I am in no way ashamed of it but I'm fed up of coming out of appointments with patronising specialists feeling sad that my son might not be able to do what other children can, and wondering what the future holds as nobody seems to know.

Hello
I'm not far from Glasgow myself... my son has just been diagnosed with autism he's 4 1/2. You're little boy sounds a bit like mine as In he has good social skills (although he's speech delayed) he enjoys being in the company of adults and children he's very loving he to gives good eye contact he's an amazing little boy...I'm very chilled out kind of person and I try to focus on the positive and I never compare my little boy to others his age he's just him and he needs a little more time to accept things but whenever he achieves something it makes it all that much sweeter. We were lucky we got our son in to a fantastic nursery which has helped a great deal he really loves it there.
I no it can be hard not to worry but don't let it take over just take each day as it comes...is your little boy at nursery just now xx

 

[smurff]

Hi, im new hear, I've been searching for other parents to talk to who seem to be in a similar situation as myself. My gorgeous little princess is 3yrs 4 months, when she was about 6months old she had tonticollis then went on to have plagiosefilly (sorry spelling not my strong point) she was under peadiatrion for this and the also thought she was late in crawling and referred her for physio at 9 months which I was not happy about as I thought it was extremely early, anyway she crawled the day before her 1st bday but then they said she should be walking by now so it was back to physio, she finally walked at about 19months. Her first word was mummy at about 10 months. We moved house and area so we had to start referrals all over again plus we noticed one other eyes wondering so we got a refferal for that as well, turns out she had a dirrective squint in both eyes. Now you could only notice this when she was tired or off in a world of her own other than that not noticeable at all to the point that none of my family or her dads side of the family ever noticed it but the nasty horrible uneducated stupid cow said to me and her dad that we should look into an operation to correct it cause we didn't want her growing up looking like that!!!!!!! Believe me I can't say what I thought about this poor excuse for a women cause I'm sure this post would be taken down. She had a 2 yr review later on last year as we were just starting to get concerned about her speech, we filled in the forms of what words/sentences she could say and went to see a peadiatrion, we were told speech was fine and not to worry. We moved again to where I'm living now and hv come to see us as we were new to area and I explained my concerns, to cut a long story short in the last 6 months my DD has had development tests, peadiatrion apps, eye test which by the way showed she never had a squint in the first place, speech therapy, 2 hearing tests, blood tests and has started nursary. Finally a month ago we were told she has global development delay, not sure why as she only had blood test done yesterday, she has very limited speech, can probably say 20 words and a few sentences but since she started nursary is getting alot better. She doesn't understand things and doesn't know how to interact. She's such a happy smilely lg and loves her little brother to bits and gives the most amazing cuddles. So just wanted to give you a bit of background on my lg and say hi and its finally such a relife to be able to talk to others who understand things

 

[sequeena]

Hi everyone x

Smurff I'm sorry it's taken a while to respond, I have been very busy recently. Your LO sounds a lot like my son - which is typical as he has.GDD too. How are things?

I can't even remember everything I have been that busy.

Basically:
- thomas' eye sight has deteriorated. We don't know to what extent yet. He has an app On 1st december
- finally met the geneticist she is fascinated. They found nothing On their tests but she said there is a genetic syndrome They just don't know what yet. Whatever it is it is a condition that only affects males and is passed On by females. We have a 1 In 4 chance of another baby having the same problems. His details have been sent to 2 different studies so hopefully we will get an answer soon.
- we and his teacher tried potty training for 5 days. Disaster. Try again next time.
- bonfire night. Disaster. Triggered his SPD BADLY.
- Date for moving is december 4th. Finally!!
- my doctor tried to put the mirena coil In me. It went badly. I had to have the implant instead.
- thomas' first parents evening was lpvely. We found out he goes to the sensory room every day, does mr tongue exercises, can draw a 2 with lots of help, signed his IEP etc.

There is more I bet. My brain is just tried at the minute.

 

[sequeena]

I just realised I started this thread 2.5 years ago.... wow. I hope it has provided comfort and support for you all. I changed the name, it seemed right to.

 

[Thurinius]

I just realised I started this thread 2.5 years ago.... wow. I hope it has provided comfort and support for you all. I changed the name, it seemed right to.

It certainly has helped.
I'm one year into my journey as parent to a child with additional needs and everyone on this thread has been so supportive.

I've felt able to vent here, to reveal my frustrations in an honest way because you guys get it.

With other parents I'm always caught in this internal dilemma. I don't want to make my life sound too difficult because I don't want to appear put upon and I love my son and 80% of my time with him is a doddle.
But then I don't want to act as if it is easy and that him being autistic doesn't create problems.

 

[Damita]

:wave: hey! I'm damita my son had a severe vaccine reaction at 3 months which has caused him to be development delayed and has hypotonia down his left hand side, he's 16 month but is at a development of a 9 month old

 

[sequeena]

Thurinius, I'm glad and I understand. I feel sometimes that people will get sick of me talking about things. That never happens here.

Hi Damita, lovely to speak to you again so sorry about your LO how is he doing?

 

[Eve]

I'd like to join you ladies if you don't mind.

I'm Eve. I have two children. J is 13 and K is 5 (almost 6). J has been diagnosed with ASD, ODD, ADD/ADHD, Bipolar Disorder (tentatively as they don't fully diagnose until adulthood with that one) OCD, and a non-verbal learning disability as well as has delays with his fine and gross motor skills. His APGAR score at birth was a 2, then 5, then 7 due to the cord being wrapped around his neck so tight for what seemed like forever. He needed to be resuscitated after delivery. We've been through A LOT with him including a 10 week hospitalization after our daughter was born (she was 14 months) and he spent some time outside of our home as there was a safety issue for a while

J also suffered the loss of his newborn baby brother when he was just 5 years old.. During that time I was struggling to even find help for him. He didn't get his proper diagnosis until well after my daughter was born... before that, different doctors just wanted to push medications on him.

We still struggle daily with many tasks, school being a HUGE issue but he's come a long way and I'm amazed with how smart he is. He's doing amazing with his academics. He needs to work on his social skills but he's not had many friends at all growing up so it makes it even more awkward for him... We're getting there, slowly but surely getting there.

 

[Damita]

:wave:

Yeah doing really well, can pull himself up, sit up, trying to stand

Eve

 

[Reid]

Hi Eve my fellow christmas lover lol ive seen you pop up on the christmas threads where I've spent most of September October November and December lol not been on the special needs section for a while so ill give an update of where we are now.
So in September my wee boy 4 was diagnosed with autism. I thought after diagnosis this would open doors to some support like asd friendly play clubs and just general support for me as his mother like someone I could go to for advice I've got to say I've been left very disappointed and I don't think I've every felt so isolated and alone. He was diagnosed I was handed a bunch of leaflets told to apply for dla and thag was it that was 4 months ago and we haven't heard from a single health care professional. I've searched the Internet high and low for clubs to go to all are pretty out the way for us and require 2 buses this is where we have a big problem. My son doesn't wait well and tends to dart off so you spend all the time waiting on the bus chasing him trying to keep him out of harms way this can lead to meltdown you get the picture. I've emailed all the local autism charity's asked about starting a club in a town closer to me bit the NSA say they can't do it they don't have the means.
Feel like I'm banging my head against a brick wall.
Oh god hurry up spring where we can at least get out in the garden.
How's everyone else doing? Hope you all had a lovely Christmas and all the best for 2016 xx

 

[sequeena]

Oh gosh with the move and us all being ill then Thomas going back to school I've not had a chance. We had a lovely christmas.tjanks I hope you are all well x

What a shame that there is no support for you that is awful have you googled your town and carers service? Almost every town should have one. I joined ours a month ago and have been invited to all sorts. It's.for the carers but you can ask What is out there for your son.

How is he with school? Any support there?

 

[Reid]

Oh gosh with the move and us all being ill then Thomas going back to school I've not had a chance. We had a lovely christmas.tjanks I hope you are all well x

What a shame that there is no support for you that is awful have you googled your town and carers service? Almost every town should have one. I joined ours a month ago and have been invited to all sorts. It's.for the carers but you can ask What is out there for your son.

How is he with school? Any support there?

Yeah I've been in touch with them and I put my name down for the autism courses they do but they won't be for a few months if they get the funding. It was them I asked about starting a group in the town next to the wee village i stay in but they don't have the means for it. I'm in various facebook groups which I've asked about groups there's absolutely nothing. His nursery is great and he enjoys it. I'm waiting to here back about a wee dance class to try him with but from reading up on it I don't think it's for autistic kids which I thought it was and if it structured he won't follow it and probably get annoyed x
Glad yous had a good Christmas xx