Please or to access all these features

SN children

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

Community Peads app Monday help please!

16 replies

Bexxeb · 21/11/2020 19:45

Hi I posted before but I had no reply's, we have our first community Peads app Monday. Can anyone guide me on what they experienced what are the next steps ect. How there child was diagnosed and how long it took? I'm feeling fairly nervous now I would link my last post but unsure how to. Anything would be helpful

OP posts:
openupmyeagereyes · 21/11/2020 19:59

There are often posts asking for this information, if you do a search you will probably find some helpful info.

We didn’t see a community paed, we saw a developmental paed at a child development centre, however I expect that the process will be similar. For us they asked a detailed developmental history, gave ds a brief physical exam and they also evaluated his play, though this was the SALT who was also there so they may not do this step at your appointment. I think it was nearly 2 hours in total.

We had already had SALT input prior to this and we got a diagnosis at the end of this first appointment as it was a multi-discipline assessment. Ds was 3 yrs 11 mths. We were then given a follow up appointment in 6 months.

I hope this helps. We were told it was a play based assessment, I was not prepared for a detailed history to be taken.

PonderingPeggy · 21/11/2020 20:08

My experience was years ago so no doubt very much out of date now. Just in case it's of any use though, the first appointment was about the Paed gathering as much information as possible about the child's history and behaviours.

Questions asked were things like:

  • What was the birth like? Any problems?
  • Any family history of medical issues?
  • Child's medical history?
  • Any issues with motor skills, speech, behaviour etc?
  • When did you first notice problems?
  • Do they go to nursery/preschool/school and how are they getting on?

I would make yourself some notes on the above as sometimes your mind tends to go blank and then you kick yourself later for forgetting...

While all this was going on, the Paed was observing DS to see how he interacted with the people in the room and the toys that had been set out for him.

I remember that DS was also weighed and measured, including his head size.

In our case the Paed agreed that DS needed a full assessment. For us that meant a week's worth of appointments with the OT, Physio, Child Psych and a SALT. They also wrote to the preschool, DS' SALT and our portage worker for their opinions. Different parts of the country will have their own system for this, and it may be very different for you.

The assessment itself took place around 3 months later. It was at short notice though so might possibly have been the result of someone else having to postpone/cancel their appointment.

At the end of the assessment there was a meeting for everyone involved to attend. The HV and preschool didn't bother, so it was really just us, our portage worker, our SALT, and the people involved in the assessment. During that meeting the Paed listened to everyone else's opinions, looked at their results, and then diagnosed ASD.

As I say though, this was a long time ago and probably a different system. I would imagine the questions asked at the first appointment would still be the same though.

Good luck. Flowers

Bexxeb · 22/11/2020 08:43

Thank you so much... we've seen sALT and we get inclusion funding and under portage and questionnaires ect have already been filled in. I've written what's as long as a novel to take with me is there any questions I may not of thought about to ask that you found helpful? Thank you so much for your reply.

OP posts:
openupmyeagereyes · 22/11/2020 09:05

I think the questions you will need to ask depend on the outcome of the appointment so it’s hard to say right now. Next steps are the key one, obviously.

You are already getting support so there may not be much more to add beyond a diagnosis. Your local offer page will show the range of what’s available. The paed’s report will add to your list of professional documents to support an EHCP application. Have you had an occupational therapy assessment?

Bexxeb · 22/11/2020 10:38

@openupmyeagereyes

I think the questions you will need to ask depend on the outcome of the appointment so it’s hard to say right now. Next steps are the key one, obviously.

You are already getting support so there may not be much more to add beyond a diagnosis. Your local offer page will show the range of what’s available. The paed’s report will add to your list of professional documents to support an EHCP application. Have you had an occupational therapy assessment?

We haven't seen a occupational health therapist. I don't really know any of the process as due to covid it's been really hard to get hold of most. We're under lots of different special specialists as he has a huge issue with food where he struggles to swallow and gags and chokes which they feel could be sensory. Nursery have been brilliant with him as have portage. I've made lots of videos of him stimming ect to take with us. Can I ask without sounding silly what's a EHCP? X
OP posts:
openupmyeagereyes · 22/11/2020 12:00

It’s an education, health and care plan but this isn’t used in Scotland so it depends where you are.

Bexxeb · 22/11/2020 17:02

@openupmyeagereyes

It’s an education, health and care plan but this isn’t used in Scotland so it depends where you are.
Well we have had a zoom meeting with myself, nursery, early years and the h.v. I assume that's similar maybe? I've had to explain to little man a lot today where we're going tomorrow to try and prepare him so we don't have a meltdown once we arrive. I'm thinking when he gets weighed that'll be the hardest part for him as he hates anything like that and the last trip to A&E ended in a full blown meltdown. Is it the pead who does the diagnosis?
OP posts:
openupmyeagereyes · 22/11/2020 18:31

“An Education, Health and Care plan (“EHC plan”) is a legal document which describes a child or young person’s special educational needs, the support they need, and the outcomes they would like to achieve.”

www.ipsea.org.uk/pages/category/education-health-and-care-plans

In England you usually can’t access a special school without one and if your child attends mainstream school and has needs that are beyond what a school would typically be expected to support, including 1:1 support, then an EHCP will be necessary.

I think the paed will diagnose but only in consultation with and agreement from other professionals - SALT, OT and educational psychologist typically.

Good luck. You may find the appointment hard even though you may already think he will get a diagnosis. These things can still floor us anyway Flowers

Bexxeb · 22/11/2020 19:09

@openupmyeagereyes

“An Education, Health and Care plan (“EHC plan”) is a legal document which describes a child or young person’s special educational needs, the support they need, and the outcomes they would like to achieve.”

www.ipsea.org.uk/pages/category/education-health-and-care-plans

In England you usually can’t access a special school without one and if your child attends mainstream school and has needs that are beyond what a school would typically be expected to support, including 1:1 support, then an EHCP will be necessary.

I think the paed will diagnose but only in consultation with and agreement from other professionals - SALT, OT and educational psychologist typically.

Good luck. You may find the appointment hard even though you may already think he will get a diagnosis. These things can still floor us anyway Flowers

Thank you so much you've really helped me to understand a bit more of the process and I feel abit more at ease knowing a bit more. I will keep you updated on what happens tomorrow thank you again. X
OP posts:
openupmyeagereyes · 23/11/2020 17:48

How did it go OP?

Bexxeb · 24/11/2020 19:24

@openupmyeagereyes

How did it go OP?
Hi lovely sorry I hadn't replied. So we see the pead he said he's certain it's autism but needs SALT to agree to diagnose. So will ask them for a report on what they feel (they've only seen him for dysphasia) but have noted it's due to sensory issues so if they give good enough evidence he will get diagnosed if not he will approach another professional. He also wants to get him a EHCP like you'd mentioned, I cried not because I'm sad as I knew it was coming I was very much prepared and had my suspicions since he was tiny, it was like a cry of finally something is in motion to give him the help with the education he so rightly deserves and someone else sees him more than "he's just being ignorant" and can actually see he's beautifully quirky xxx
OP posts:
Niffler75 · 24/11/2020 20:04

@Bexxeb It's ok to feel sad and relieved. My son has a neuro condition and the validation that a diagnosis brings, plus additional support is a relief.

Bexxeb · 25/11/2020 01:13

[quote Niffler75]@Bexxeb It's ok to feel sad and relieved. My son has a neuro condition and the validation that a diagnosis brings, plus additional support is a relief.[/quote]
It is a mixture of both finally feel like I'm getting somewhere with all these apps but at the same time sad that he does need support. I wouldn't change him for the world and really embrace his differences he's amazing. How is your son? Do you get much support with his needs? Xx

OP posts:
Niffler75 · 25/11/2020 08:32

@Bexxeb Prior to diagnosis we either had no support or the wrong advice given that did not match his needs and made things worse.
Finally now we have good support generally! 😊
Happy to say with diagnosis and the right support my son is doing great and is a total superstar! 😁

Bexxeb · 25/11/2020 20:13

[quote Niffler75]@Bexxeb Prior to diagnosis we either had no support or the wrong advice given that did not match his needs and made things worse.
Finally now we have good support generally! 😊
Happy to say with diagnosis and the right support my son is doing great and is a total superstar! 😁[/quote]
Aww I'm so glad you got everything sorted. It's really hard until you get a diagnosis isn't it because everyone has different suggestions and own ideas and I think it muddles everything and blurs lines. (We've had a lot of this) I think that's why I'm so eager to get everything sorted so we've not got everybody giving there input than those who actually know what to do. That's so lovely to hear he's a superstar how old is he if you don't mind me asking Xxx

OP posts:
Niffler75 · 25/11/2020 21:39

@Bexxeb My superstar is 9!
I know you will be going through the EHCP process. Just ask any questions as it's a bit of a minefield. Also think about applying for DLA which may well make you eligible for Carers Allowance depending on your work situation. For DLA you do not need a diagnosis in place. Hope that helps! 💐

New posts on this thread. Refresh page
Please create an account

To comment on this thread you need to create a Mumsnet account.

This thread is closed and is no longer accepting replies. Click here to start a new thread.