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

[Thurinius]

I don't know what to say in these circumstances. Even though your kid hasn't done anything hugely wrong or disturbing do you tell everyone 'he's autistic'?

 

[alibaba24]

I would because it would make me feel better. At the parties I would drop it Intl conversation DD has language problems and doesn't socialise well. I shouldn't have to but I did feel I'd be less judged for hovering over her and that also the whole party was more bearable. And mums talk so I knew it wouldn't be long until they all knew. And thats fine with Me. Even overal if the parents know and there kid comes back from preschool and says x wasn't nice to me today that the parents would be more understanding

 

[alibaba24]

Also it can be a good ice breaker with other parents because pretty much everyone knows someone on the spectrum. Iv had many parents approach me and say oh my DS does this and that and often parents are desperate for someone to relate to as well so just telling people has worked quite well for me personally

 

[Reid]

I don't know what to say in these circumstances. Even though your kid hasn't done anything hugely wrong or disturbing do you tell everyone 'he's autistic'?

My son doesn't have a diagnosis as of yet other than speech delay but yeah I just come out with it he has speech and language delay and will tell them if he gets a diagnosis of autism. It's people and there pure ignorance and judgmental way of thinking that makes these situations very difficult for special needs parents xx

 

[Thurinius]

I don't know what to say in these circumstances. Even though your kid hasn't done anything hugely wrong or disturbing do you tell everyone 'he's autistic'?

My son doesn't have a diagnosis as of yet other than speech delay but yeah I just come out with it he has speech and language delay and will tell them if he gets a diagnosis of autism. It's people and there pure ignorance and judgmental way of thinking that makes these situations very difficult for special needs parents xx

I guess people just don't realise the work involved in raising a sen child. Especially when the disability isn't visible. I'm probably to blame I play it down I think because I don't want to be seen as some worn down parent of a disabled child.
And it's not always hard work, there are so many positives. But I think I only mention to people the positives rather than the negatives because I'd feel disloyal to my son discussing all the issues he has.

 

[Starry Night]

I just tell people. I don't know what it does for them but it makes me feel like I won't have to apologize quite so much for his future behaviour. I do apologize a lot for him.

We don't get invited to things though so not much experience. I'm bit of a recluse by nature so I don't really notice it most of the time but when I stop to think about it, then yeah, it feels kind of shameful. Only one family has RSVP'd for my son's birthday party which is in a week and we sent the invites out a month ago. I think that reflects more on the fact DH and I aren't very popular rather than DS having autism but it still sucks the kids have to pay for parental politics. Just as well, I guess, as I don't think DS would like a huge crowd. It's his best friend's family that is coming and my parents are coming out as well. I'll prepare some extra food in case anyone else decides to show up.

I've been sick so missed church today but DH came home with the report that DS had run up onto the stage during the pastor's final prayer and knocked over the drum kit and began banging on the cymbols. DH was holding DD so couldn't do much about it. Finally, the dad from our family friends (the same ones coming to the party) ran up and got him. LOL

 

[annanouska]

Yes I tell them. If your child doesn't have a specific diagnosis just say they have additional needs, if you mention language problems you tend to get ohhhhh to will talk when ready etc!

It makes me feel better, it makes me feel they won't judge me as much. I know I shouldn't have to but it does help me.

The party sounds like ones I go to with Marcus! X

 

[sequeena]

I literally just say my son is disabled.

 

[annanouska]

Sequeena we will be going to the genetics team later this year, what will they do? Latest report from consultant is so frustrating "continues to be a puzzling young man in terms of definite diagnosis" I want to just scream please just stick him in the box he fits mostly as until u do I just feel,like it's all my fault he's as he is as u can't find a stupid box!!

 

[Reid]

So after a few weeks where I thought we were going backwards I took ds to our local cattle show (horse jumping dogs sheep cows bulls tractors ect) is very busy and he done great yes there was a few issues but some big improvements from last year. Once his turn on the bouncy castle was over he cane off no hissy fits he held my hand most of the time he was still doing this throwing himself to the ground but I was able to ignore it as we were in a safe place no cars and he just got back uo and took my hand.
We left early as he wanted to start running round with all the animals round it wasn't safe
I have a meeting with his nursery this week so looking forward to that he'll be in as a normal day so hopefully I can watch on for a while to see how he's doing.
Still going to the hanan more than words course every 2nd week had some good tips from there there videos on you tube are worth a watch xx

 

[sequeena]

So glad things are going well lynne x

As for genetics team - I've not a clue sorry. We had genetics counselling in january whuch basically meant going through mine and Sean's family tree. The geneticist for our area has resigned and will leave in august. We are near The top of The list but I have to ring back in september.

 

[sweet83]

Hello ...

I am new to this thread.. my daughter is 2 year 10months today... she just have more or less 100 words of vocabulary..she understands and follows a very few instructions like put it on table, bring it ,give it ,stand up, sit down,jump,dance....I am very much worried about her speech delay. even the words she speaks are very unclear... I read books to her ,talk to her a lot of time,show her baby videos on tv.. have no idea what else I should do? and to the brighter side she is potty trained...
I am a SHAM... and from this september (after she turns 3)goes to full time preschool..

 

[sequeena]

Almost 3 and about 100 words? She sounds like She is doing great to me kids can mispronounce things for ages. Her understanding sounds great. I'm sure She will be fine and will pick up loads at scholl x

 

[Peanut78]

Almost 3 and about 100 words? She sounds like She is doing great to me kids can mispronounce things for ages. Her understanding sounds great. I'm sure She will be fine and will pick up loads at scholl x

I also tought it sounds like she is doing great If you're really worried bring it up with your doctor.

 

[Reid]

Hello ...

I am new to this thread.. my daughter is 2 year 10months today... she just have more or less 100 words of vocabulary..she understands and follows a very few instructions like put it on table, bring it ,give it ,stand up, sit down,jump,dance....I am very much worried about her speech delay. even the words she speaks are very unclear... I read books to her ,talk to her a lot of time,show her baby videos on tv.. have no idea what else I should do? and to the brighter side she is potty trained...
I am a SHAM... and from this september (after she turns 3)goes to full time preschool..

She sounds like she's doing great I wouldn't be overly concerned at this point going by what you've said xx

 

[sweet83]

your posts gave me some strength...

 

[Starry Night]

100 words does sound good. If you're still worried--if something seems 'off'-- then ask your doctor. Our doctor said that they want 100 words and 2 and 3 word phrases by the time the child is 3. Are the words consistent and does she show signs of understanding what they mean?

My son had the required amount of words so we didn't contact the doctor (the doctor was concerned and had told us to call by a certain time if the number of words wasn't met) but what we didn't realize was my son was not using the words consistently. He'd say a word or even a complete sentence--in context--and then never say it again. Or he would use words and sayings out of context and then show no signs of seeing we didn't understand him. Babble was his default and once again, he didn't show any signs of frustration that we weren't understanding him. He also would also stand there and yell when he wanted things and we'd have to guess what he wanted. Now he talks much better and is constantly improving.

afm - last week was our son and daughter's combined party and it went well. Only two families plus our parents showed up but it turned out to be the perfect size. The one family has twins my DD's age and then their other kids are older--teens already. The older boys played soccer and frisbee with my son and I could tell he was so happy. He had a great time! And everyone left about an hour before bedtime so it was just the perfect amount of socialization. For a first-ever birthday party it went really well.

And DS is showing up dry in the morning more often than not these days. We still need to take him to the potty in the middle of the night but he's getting much better at getting himself up in the morning. Makes for less laundry! I am not sure when I should experiment with stopping the midnight potty trips. He pees like a racehorse when I take him and he's pretty much sleeping on the toilet so I don't think he would have woken up on his own. I won't plan on stopping the midnight trips for awhile but I don't know how to tell he's ready either.

 

[sweet83]

she is not saying any 2 or 3 word phrases... I show her the pictures of some things and asks her what is it ... she says that in her own pronunciation... for example
1. I show her picture of "leaf" and asks what is it --- she says "leap"
2.Elephant -- says just "fant or sometimes "ant" (she says "ant " for "ant")
3.fish-- "pit"
4.car -- "'kaav"
5.blue -- "bhoo"
6.green -- "gheen"
7.lemon -- "yema"
8.red -- "yed"
9.black -- "baak"
10.purple --"pappoo"
11.monkey-- "monkey"(yes we got this word perfect)
like the list goes...
12.strawberry-- "taabeyy"
13.apple --"yappe"
14.white -- "white" (another lucky word)
like this...

most of the day she babbles but recognizes the things and says when she sees it..
she knows I am her mommy but so far does not call me ...
if she sees ball and if I say her "blue ball" she stops saying it and remains calm...

do you think it is not something I have to worry?

 

[alibaba24]

I'd be more concerned with her understanding more than her actual speech sounds if she has good understanding that is very important

 

[alibaba24]

I just realised your daughter is nearly 3 I think (not sure about age 2) at 3 they are expected to be speaking in sentences and following 2 step instruction. Speech and language therapy seems like it will be beneficial to your little one x