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

[AP]

OMG well done Alex! That's a serious milestone I bet you're so proud

I'd be afraid to go to cbeebies too, I suppose the upside is at least you can leave if it goes wrong.

Thats the plan. I'm thinking ipad and headphones ... hmm!

The thing is she literally wont sit down. I actually cant insist on how bad it is. There isnt even a dinner time where she doesnt get up every 1-2 minutes. I'm honestly thinking she has ADHD but i dunno where to start with that! To be fair i'm sure they will soon find out when its time for school!

 

[sequeena]

Good idea, or maybe those industrial ear muff type things? I know you can get them for babies so there must be toddler versions too x

 

[RachA]

OMG well done Alex! That's a serious milestone I bet you're so proud

I'd be afraid to go to cbeebies too, I suppose the upside is at least you can leave if it goes wrong.

Thats the plan. I'm thinking ipad and headphones ... hmm!

The thing is she literally wont sit down. I actually cant insist on how bad it is. There isnt even a dinner time where she doesnt get up every 1-2 minutes. I'm honestly thinking she has ADHD but i dunno where to start with that! To be fair i'm sure they will soon find out when its time for school!

My son was like that. We didn't bother taking him anywhere where we knew he'd have to sit down for ages until he was about 5. Meal times were ok- as long as he had food he'd be find. It's only since he started school that he's been abod to sit and watch things. We took him to see the Gruffalo when he was just over 5. It only lasted 60 min but after about 30 he just couldn't sit still-and he loved anything Gruffalo at that point.

He definitely isn't ADHD-he just prefers to be active.

 

[justhoping]

Good idea, or maybe those industrial ear muff type things? I know you can get them for babies so there must be toddler versions too x

i actually just saw and picked up for my little one there headphones for kids..
may sound weird but you can put settings on them that the kids cant play with so they dont harm there ears or break the headphones.. there also break proof and very comfy looking so your little ones may like these better then ordinary ones..

im thinking if they have them in walmart they have them in asda maybe?

 

[justhoping]

asking an opinion for me, not my two kids who have this..

im finding it hard to communicate latley. People take me wrong, they think im cold and Im not cold. On here and in real life. I try very hard to think before I talk or write because I know I sounds factual and cold. Even when im writing something heartfelt. anyone else have this problem or have older kids with this problem..

Any suggestions...I have Aspergers, Im also a tad OCD with a few other stuff mixed in ,but i think it comes with the territory...lol

 

[sequeena]

I don't have advice, just hugs it must be frustrating communicating at times.

 

[sequeena]

I have to share Thomas' milestone... today was the first time he did finger painting without drinking the paint

 

[justhoping]

I have to share Thomas' milestone... today was the first time he did finger painting without drinking the paint

that is really good....

 

[Tor]

Hi ladies hope all the LO's are doing well

DS1 has GDD and most likely autism, he doesn't understand or respond to his name, spinning is getting worse, arm flapping getting worse etc etc.

Sorry deleted my rant, just fed up of people spouting rubbish about how people can just outgrow autism and such really winding me up as ive only just accepted there is something wrong (and its very obvious there is now, you would only have to meet him for 5 minutes to know he had special needs) and maybe he will lead a normal life but maybe he wont improve that much I don't need people telling me really inaccurate things about autism!

 

[sequeena]

Tor rant away

 

[Tor]

Thanks hun, the full version was all the things my mil has said but I deleted it as knowing my luck she would be googling away and it would come up haha!

Feel better now as OH has just got home and I've let it all out and breathe...

I hope you don't mind me joining in on here, ive been stalking for a while but really struggling lately and just feeling a bit disheartened/frustrated with it all, I think its as his 3rd birthday gets nearer I always said by then he would probably catch up and if he didn't then you would know there was definitely something wrong and hes got worse really so I think its just got me down

Do you ever feel frustrated when all your trying to do is simple things that they should be able to do at their age and its just impossible? I know its not his fault and I feel terrible but I cant help it lately.

 

[bumpin2012]

welcome to our little group

special needs kiddos are frustrating for sure. I think every one of us in here have had a period in time where it all is too much to deal with, and all you want to do is scream. rant away. we're all here to listen

 

[Peanut78]

Hi All,

Thanks so much for your supportive posts a few weeks ago, it meant a lot I'm sorry I didn't reply sooner, I was just finding it so difficult even writing about it felt overwhelming. I'm feeling a bit better now and have put lots of wheels in motion to try and make his school environment better more productive. More on all that later.

Tor, I often feel very frustrated with my son. I feel so guilty about it too, I know he can't help it, but sometimes neither can I. I too am tired of people telling me that everything is fine: "once he starts talking, his speech will come very quickly" - no in all likelihood it won't and those comments which are intended to be helpful and comforting are anything but. To me it just highlights the fact that I have to manage everyone else's expectations - which I find equally exhausting.

I've actually reached the stage where I think I need to go see someone - a counselor perhaps with all the pent up emotions I have - I'm so angry, resentful, afraid, frustrated, overwhelmed etc. the list just goes on...

 

[Peanut78]

Also btw, anyone read/ heard of this book...?

https://www.amazon.com/The-Elephant-Playroom-Extraordinary-Heartbreaking/dp/1594630356

 

[bananabump]

Has anyone's toddler had a hearing test recently? Leo has got one on Thursday and I've heard mixed reviews about how accurate they are at this age x

 

[sequeena]

Peanut I'm glad things are being sorted and yes I agree counselling would be good - if I'd known how things would go with T I would have stayed in counselling for longer.

I've never seen that book before it looks like it would be a helpful (and emotional read) though.

Emma Thomas had one last year, July time I think. He's having another on the 21st. Has he ever had one before? Thomas was fine for his he didn't like the stuff being put on his head though. Whether it's accurate or not I can't really say as my paediatrician seems to think he has hearing loss along with glue ear but I was only told glue ear.... so frustrating.

Also, what the hell congratulations!!

 

[bumpin2012]

congrats bananabump!

G had had hearing tests done in June and September. I would say they were fairly accurate, as symptom wise, the tests confirmed his symptoms

 

[annanouska]

I just wanted to say hello ladies

I still see a few of you "out and about" the forum so wanted to say hello

I stopped posting in here as I felt a bit guilty moaning about my Los "delays" as I know they are nothing compared to what you are all going through /been through so I didn't ant anyone to think I was trying to be a bit obnoxious ( the my 1 yr old can only say 50 odd words is that behind thread spring to mind * that wasn't me who made that thread just I case anyone did think that! *)

Just a little update... We are 18 months now. He still suffers with his hyper mobility tho it doesn't look quite as horrific now. He has just started walking now at long last but it is on his terms and not very often I think it hurts his feet at times he says nothing ( used to say hiya mummy and dad not a word for 4 months now) he doesn't appear to understand words. Or commands either.hearing is top notch he likes stacking g cups ATM, he doesn't stack but likes to order them into one another. Behaviour is horrific far worse than others hs age I think mainly due to communication

Xxx

 

[Tor]

Peanut- Its good to know im not alone, sometimes I feel like im just not cut out for this, im always the flustered looking Mummy lately! We will cope of course we have to so just do I guess but counselling definitely sounds like a good idea, I will keep that in mind for myself if things don't start to improve soon.

The book looks really interesting, it would be nice to read others experiences as I don't really talk in real life to other special needs parents, I am always invited to the local support group but I find it so upsetting being there I don't go.

Annanoushka- I saw the thread, I try not to be too oversensitive to things like that though jut because my child cant I don't want everyone else to hide their childs accomplishments even if it does sting slightly sometimes!
Is your son being seen by anyone or does he have to wait til 2? We are in the Uk and first saw someone at 21 months but heard also that you normally wait until 2 for most things.

Bananabump- My DS1 had a hearing test a while ago they played different noises and when they looked in that direction a puppet in a box started going off, he definitely looked in the different directions for each noise so I could tell he could hear it, im not realy sure exactly how accurate it is but you would know if there was quite significant hear loss for sure.

 

[sun]

Hugs everyone! Hope everyone had a good holiday - I've been away for a while and as usual missed so much! Update from us - I pulled my son out of school completely last Friday and we're looking at other options. Things were getting out of control and just much too difficult for him at school and us at home.

Tor - Welcome and please feel free to rant away. That's what this thread is for!