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Here are some suggested organisations that offer expert advice on special needs.

Learning/intellectual disability

2 replies

AKingdomForAUsername · 22/01/2023 18:17

Hi all,

First time posting on this forum - apologies if I'm not using the right terminology or wording things clumsily! Feel free to keep me right. :)

We're considering adopting a LO who has a genetic risk of learning/intellectual disability. They're only 13 months at the moment, so very difficult to tell if or to what extent they might be affected.

We have a couple of meetings coming up with people who know them or have seen their papers. There are a number of questions we're hoping to ask these people, but would appreciate any advice on questions which might help us to work out if there are any signs of a learning disability already.

And we'd be super grateful if any if you whose kids have intellectual disabilities were happy to share - not sure how to phrase it - what it's like? Any tips on aspects to consider, especially how it impacts (or not) your daily family life, things you wish you had known etc? Anything you might be happy to share would be hugely appreciated. Feel free to PM instead of posting, of course.

Thank you.

OP posts:
ASVBubs · 02/10/2023 10:40

Hi,

My daughter is 7 and just recently she has been diagnosed with Intellectual Disability, also, Developmental Co ordination disorder and DLD.

My daughter hit all milestones as a baby, I had no concerns, until she started talking. She would babble in "her own language", I could understand her, but others couldn't. When she started nursery I shared my concerns regarding her speech and was told she would get better with it as she got older.

Her speech definitely improved but I could also see she was delayed with it. Also her work at school. This continued through school.
We moved and she started a new school in year 1, this school was VERY supportive of her and helping with her speech and delays in work. Also, the teacher said for me to contact my GP so she could be put on a waiting list to see a pediatrician. The GP done this and also the speech and language therapist waiting list. This took around a year, while myself and the school supported her. Her teachers were concerned she wasn't processing information properly as well as her speech being a concern.

After a year on the waiting list she was assessed over a month by a speech therapist and diagnosed with DLD. A couple of weeks later diagnosed with the rest by a pediatrician.

That's her story so far.. diagnosis wise. She is now 7.

What she is like as a 7 year old with these diagnosis.
She is unable to write out the alphabet, she cannot correctly write her name or numbers. She needs prompting and assistance with washing and dressing. I do a lot of work with her when it comes to her speech and language. Every aspect of her life she acts more like she is 4 years old. She doesn't understand or process information and instruction well, meaning things can be a little more dangerous in certain situations.. as she may not realise something may be dangerous.
She is also happy, confident, excellent at drawing, ambitious, friendly, polite and loves to make people smile. She loves hugs and attention, also really, really tries her best with everything she does.

For myself, I feel over whelmed, more so as I worry about the future for her as I don't know what it looks like. Day-to-day, it's just like having a child that is younger than they are, in my opinion any ways.
Days sometimes are harder than others when it comes to her following instructions and repeating myself or changing the way I may be wording something as she doesn't understand.

I find that having support at school is massive. If I didn't have the support from the school this would be a lot harder. I know when she's there, they support her, they're aware of her diagnosis and support with work and follow the strategies from the Speech and Language therapist.

Looking back at this entire journey I wish I had pushed more when she was younger, as I knew she was delayed and it wasn't something she was going to "grow out of" , but I am happy we are where we are and at 7 years old she is diagnosed and I can help even more so knowing what is happening with her.

Sorry for my long reply lol. I didn't want to read your question and leave!

YellowRosesWithRedTips · 02/10/2023 12:38

A few ideas:
Has LO got any services (e.g. paed, SALT, OT, physio, portage) already involved or have they previously been assessed by them? If not, is there a plan for them to be seen? If yes, what were the outcomes of those and is there ongoing involvement?
Has LO met all their milestones? If not, what hasn’t been met and what is in place to support their development? Do they require any equipment?
How did weaning go, how is their eating and drinking?
Any available history about birth parents and any other siblings (things like did they/do they attend MS and if they have a LD, the level of LD can give an indication of needs). Have you seen the CPR? Are children’s services being open or are they being evasive?

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