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

[essie0828]

Well she went with the nurse without crying and I can't stop. Thanks sequeena Ts' thumb surgery is coming up soon to??

 

[sequeena]

It's hard when you hand them over

Yes, T's is soon. Though no idea when as I've still not had a date.

 

[moggymay]

Hope all went to plan for her GA is hard to watch especially when they dont really understand what is happening, plenty of cuddles after will help her though.

 

[Tiff]

Hello! I just noticed this thread now. I'm so bad with actually visiting the forum of things... I tend to just look in my CP.

My daughter has ASD and is developmentally behind in gross/fine motor skills, emotional needs and speech. Am I able to join in?

Essie - I bawled the entire walk home on Claire's first day of school, even though she was happy to go. Its SO hard to give them to someone else who doesn't know/love them like we do.

 

[sequeena]

Hello tiff yes you can join!

What would you like me to put on the front page?

 

[bumpin2012]

Essie. I hope everything went well

we have very clumsy steps! he's determined to go, but just lacks the balance. he can manage close to 10 steps, but usually falls after 4... he's so Fricken cute when he's doing it. so proud of himself

 

[sequeena]

Aww well done little man!

 

[Tiff]

Hello tiff yes you can join!

What would you like me to put on the front page?

Claire is turning 5 in December, she's diagnosed with Autism Spectrum Disorder. She has developmental delays with fine/gross motor skills, and is a flight risk.


Well done little man!!! It is SO cute to see them try and figure out how to walk then they actually do.

Rough day today. Claire was excited for school, now hates it. We live close to her school but they send a van to come get her as when she doesn't want to do something she'll flop on the ground and refuse to move. In talking to her teacher I found they were putting extra expectations on her in the afternoon - hence the morning meltdowns to get her to go in the first place. Her teacher is going to back off on that but its heartbreaking to see her so upset and agitated to go. Its a fight to even get her in the van!!

Heartbreaking to watch her little face sob as it drives away too.

 

[sequeena]

Oh no poor Claire Stupid teacher!!

 

[sequeena]

I had a letter this morning to say that Thomas is now on the waiting list for his op... so it's been 6 weeks since his appointment and he's only just gone on. So much for getting it done ASAP

My HV is coming round on Monday too.

Also, Sean had a message on his phone about a child disability team. No idea who they are so will have to ring them tomorrow. It may be his specialist HV but I am not sure...

 

[sequeena]

Actually scratch that, I just found out who they are. https://www.npt.gov.uk/default.aspx?page=583

And I just started crying reading it. I don't know why I'm crying!!!!

 

[essie0828]

I had a letter this morning to say that Thomas is now on the waiting list for his op... so it's been 6 weeks since his appointment and he's only just gone on. So much for getting it done ASAP

My HV is coming round on Monday too.

Also, Sean had a message on his phone about a child disability team. No idea who they are so will have to ring them tomorrow. It may be his specialist HV but I am not sure...

Just now on the waiting list!? That's crazy. I hope you guys can get it done soon and his little thumb gets better. Is he still not talking?? Sweet little guy, I hope he's just being a little stubborn. I still worry about ASD with Hayley. It's an associated disorder that can sometimes come along with CP because of the neurological nature. I hope you feel better soon. Cuddle that cute little golden haired angle for me a few times. Let us know how the visit from the HV goes.

 

[sequeena]

He's lost all his words, that's the worrying thing. He's gone back to babbling and it scares me.

 

[essie0828]

It's ok hun. It's that word that gets ya. Disabled. It was for me. Hayleys doctor said it 4 times and I heard nothing else he said. All I could think is "She can't really be Disabled." Just remember its just a word, T is and will always be his marvelous self despite that word. It's ok to be sad and grieve. I had to grieve for the future I thought we would have before the diagnosis and accept the new future we will have. It ain't easy. Be good to yourself and take your time.

 

[sequeena]

Thanks hun, I thought I was over it by now

 

[essie0828]

I see why you are worried. I would mention it to everyone working with him. It may change how they work with him. Hayley has had some regression in language that lasted a couple months then she picked up a bit but she's not a talker. She's a babbler.

Im sorry you're worried about him. I hope this new disability team can get him into lots of programs abd services that will help both of you. It really sounds like our First Steps program here. Except theres no continuity between health and therapy. I bridge the gap there. Picking her specialists and medical treatments.

 

[essie0828]

Thanks hun, I thought I was over it by now

It will never be over hun. That pain will always stab at us. But eventually it will dull some. Our kiddos are still so young and this is still a learning/ adjustment phase.

 

[essie0828]

Hope all went to plan for her GA is hard to watch especially when they dont really understand what is happening, plenty of cuddles after will help her though.

Everything went well. Longest 30 min of my life but she's forgotten all about it now. Worst thing was I wanted to cuddle her something awful when she woke up but she only wanted her papa.

 

[sequeena]

Thanks

How is Hayley doing after her op?

 

[essie0828]

Hello! I just noticed this thread now. I'm so bad with actually visiting the forum of things... I tend to just look in my CP.

My daughter has ASD and is developmentally behind in gross/fine motor skills, emotional needs and speech. Am I able to join in?

Essie - I bawled the entire walk home on Claire's first day of school, even though she was happy to go. Its SO hard to give them to someone else who doesn't know/love them like we do.

Tiff, her being out of my sight for 30 min was torture. I can't even fathom how I will handle her going to school by herself. I will probably be stalking around the school grounds like a nutter just trying to make sure she's ok

I hope the teacher gets a better feel for Claires' pace and the meltdowns stop. It's so hard to force them to do something. It breaks my heart.