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

[maisie78]

Oh nearlythere I am so sorry for your loss :'(

 

[sequeena]

Nearlythere I am so sorry for the loss of your precious daughter. I cannot imagine what you are going through. Please know that we are here for you if you need to talk

 

[RachA]

So so sorry to hear about Ava. Words aren't enough so sending hugs your way

 

[nicki01]

I'm so sorry to hear about Ava. My heart breaks, sending much love.

Love your picture of Thomas sequeena. He looks really impressed with the top!you have come so far with him, he is doing great!

Congrats bumpin, can we see a pic when you have time! I just love teeny weeny babies!! Mines huge now at almost 10 months!! Lol.

Sorry for your loss Essie, hope your resting up and taking it easy. As much as your little lady lets you! ;-)

Sorry if I missed anyone but my brain is frazzled with toy story right now! I've been made to watch 1,2 & 3 every day for nearly a week now! I'm lucky if I can get the little monkey in the garden for half an hour! She is obsessed with buzz and woody!

Started the early bird last week (its a 3 month course about autism ran by the national autism society) got session 2 tomorrow and i can't wait! Met 4 other mums there who are all lovely and learnt lots of info in just one session! Its great, I got homework too! Its ran in a school in a class room so it really is like being at school again. I never ever thought I would want to go to school, how things change when you grow up!
What's everyone been up to this sunny weekend?
We bought a sandpit that Charlie likes and watched LOTS of toy story!

 

[sequeena]

for everyone. How are we?

 

[Peanut78]

Nearlythere, I am so terribly sorry for the loss of your precious daughter Ava

 

[annanouska]

So sorry the hear about baby Ava

Hope you don't mind me dropping in again its been a long time though I have still seen a few of you about.

I think the time has come to accept we belong here now

I think my post is still on the page from a couple of weeks back. Basically my lo had a speech regression and coupled with his oth quirks it may be autism. They are running an EEG hearing and vision tests too plus had his bloods done.

He starts salt next week or rather goes for his assessment

I'm a bit up and down about it all ATM mainly as its all so waffles still I don't. Ally knw what is happening and what I can do to help him.

He can say hiya daddy and oh no now ( he went from about 15 words to 0 now back to these). He doesn't play with other children, doesn't communicate at all other than screaming and points now too. He has behaviour quirks and little things but il not bore you now.

Thanks for listening didn't really feel right time to jump in with all the sad news in here so apologies for not great timing girls x

 

[bumpin2012]

Here she is ladies

She's wonderful. G adores her, he's very loving towards her. He's acting out a bit and testing boundaries, but overall adjusting very well

 

[essie0828]

Bumpin she is Beautiful! What a beautiful family Thanks for sharing your pics. I'm sure G will adjust very well. Congrats mama!

Thanks again to everyone for the well wishes. Doing much better and getting back to our routine. DH goes back to work today and I am solo with DD. Really looking forward to it because I have missed being her primary care giver. Got some fun stuff planned for us after her PT. She has gotten to watch way too much tv over the last week and I am going to try to keep us both busy as possible. If I see Elmo one more time I think I'm going to go She is a complete freak for Elmo. Weather is nice here today and we are going to play in the sun as much as we can. to everyone.

 

[essie0828]

Anna it's tough to accept a diagnosis but it will help you to help your LO. Good luck with Salt, hope you guys can get started on therapies soon.

 

[sequeena]

Ann it is a roller coaster of emotions and appointments. You're welcome to come and talk to us whenever

Bumpin beautiful pictures xx

essie

Thomas is getting a new set of wheels in a few weeks. Wheelchair services rang today and said they're giving us a wheelchair for him

 

[Peanut78]

Bumpin congrats - thanks for sharing those beautiful photo's

Essie, as you know I'm sorry for what you have been through, happy you are feeling better

Sequeena, friggin ecstatic you have some of the support you need (on some level anyway!)

Anna - agree with what was said earlier - so hard to accept a "diagnosis" (in many ways I'm still not there 3 years on!), but it does mean you are able to access services

Nearlythere, you are in my thoughts

 

[sequeena]

Yes nearly there thinking of you and Ava

 

[bananabump]

Hello ladies, Im sorry I havent been on for a while. We had a very busy few weeks caring for Ava, visiting hospices and in and out of hospital.

Sadly Ava passed away on the 30th April, peacefully in my arms at the hospice. Heartbroken

I didn't realise you were in this thread too Em. The lanterns last night looked fab from the the pics.. I hope tomorrow goes well. Always thinking of you xxxx

 

[bananabump]

Congratulations Bumpin.. she's beautiful!! Xx

 

[maisie78]

Hello ladies, Im sorry I havent been on for a while. We had a very busy few weeks caring for Ava, visiting hospices and in and out of hospital.

Sadly Ava passed away on the 30th April, peacefully in my arms at the hospice. Heartbroken

I didn't realise you were in this thread too Em. The lanterns last night looked fab from the the pics.. I hope tomorrow goes well. Always thinking of you xxxx

I take from this that Ava's funeral is tomorrow Sending big hugs and strength to you nearlythere that you get through the day xxxxxc

 

[Misstrouble19]

we had a meeting about my son yesterday and the SEN person put it down to global delay.. delayed in all areas and again my partner is so calm about it and i do all the worrying about it. he will be having a medical have not got a date but its really nice to know that theres so much support on it... ''parents with kids who are so clever'' have not got a clue at all.. none of my friends are in the same situation as me. no matter what he is always my little boy anyway special needs or not... Rhys is currently nearly 3... and hes just started to say 2 word sentences.. but should be saying 3 or 4 apparently? im doing everything i can but tried the flash cards last night and they are great

 

[RachA]

Hi and welcome to this thread

Sequeena has given you loads of advice so i don't think there is anything to add there.

Is Rhys having regular assessments? With Esther we've been having 6 monthly assessments and for us the benchmark is whether or not she has stayed at the 18 months behind and not if that gap has closed at all. At the end of the day we figure that if she is still 18 months behind at 18 is it really that big a deal. Obviously an 8 month delay does seem a huge amount when they are only 3 but in a few years time it won't be so bad.

It's awful when you first get told about the delay as so many things go through your head. I think i am the fairly calm one out of me and OH (although the day we got told about her delay i did burst into tears on the HV's shoulder!). OH tends to think the total worst scenario so i feel like i have to be the strong one. So on the outside i'm dealing with it fine but on the inside i have says that i am a total wreck. Maybe your OH is like that?



Well Esther's SENco is going to a panel meeting on 21st May to see if she is going to be assessed for a statement. All the paperwork has been done so if we are given the go ahead the result will be out pretty quickly. We've also spoken to the school and have set up another meeting with the SENco at the school, the headmaster, the yearly years inclusion person, her current SENco and us parents.
She's also back at speech therapy for 6 weeks from this thursday and has other meetings to do with school so we are back to feeling like life is all about meetings to do with Esther being a 'problem' rather than Esther just being a child!!!

 

[bananabump]

we had a meeting about my son yesterday and the SEN person put it down to global delay.. delayed in all areas and again my partner is so calm about it and i do all the worrying about it. he will be having a medical have not got a date but its really nice to know that theres so much support on it... ''parents with kids who are so clever'' have not got a clue at all.. none of my friends are in the same situation as me. no matter what he is always my little boy anyway special needs or not... Rhys is currently nearly 3... and hes just started to say 2 word sentences.. but should be saying 3 or 4 apparently? im doing everything i can but tried the flash cards last night and they are great

Leo has only just started saying 2 word sentences aswell.. big followed by one of the words he can say : tee for tree, car, pah for plane or ball. He'll be 3 in August so it sounds like he's quite similar to Rhys? I'm here if you want to talk xx

 

[Misstrouble19]

thank you for your support... Rhys has currently been on the school action plan.. but that wasn't for him so they are going to get him on school action plus... i do think he may be statemented.. he can say car, shell (my name).. (phil) for his daddy... but he has been saying 3 word sentences today so hard to tell where he actually is at... i dont know alot about special needs. luckily enough he has a cousin that he is close too who is just a year older than him.. have you both got facebook or anything so i can have a chat xx