SEN Sons future

Rich65

Hi people I thought I would post on I am a newbee .

My son is 4 and a half ,has been diagnosed with autism and a global learning delay ,the professionals have said he has a mental age of an 8 month year old at this point ,he is non verbal and has severe problems understanding anything really but he is such a lovely little guy and i love him to bits .

I just wondered if there is any one on here who has been in this similiar situation development wise and what the next chapter entailed for you ?

He starts school in September in a SEN school and I am hoping it helps him come on with the specialised support .

Thanks 
Richard 

Hannah_Alumni

Hello @Rich65

Welcome to the community!  

I just wanted to comment and let you know, we have a brilliant section on Autism and Neurodiversity, which you may find other posts in that could help you. I also hope my comment may bump your post  

My cousin has a child with Autism, but wasn't diagnosed until later in her schooling years. Her school had a meeting group for parents in a similar situation, so that parents could lean on each other too. It may be worth asking if the school he starts at in September has one? 

anisty

Hi @Rich65. Our son is 24yrs old now and our situation isn't exactly the same as yours - but I'm sure it will share some similarities.

At 4.5yrs old, our son presented with global delay and nobody knew what the matter was - he was a puzzle! Chromosomal tests has drawn a blank. He was very slow in talking but his comprehension was that of a 2yr old so he did have some short phrases by 4.5yrs.

He didnt play at all. He watched tv, and liked push button electronic toys but mainly just sat there very passively. He had a pre-school home visitor.


He began at a small mainstream school when he was 5yrs and 10 months old.


If you want to ask more about how that went, do let me know.


Fast forward to now.


He is fully verbal. He has some supported employment is a cafe. He functions round about the level of a 12yr old (that is my own assessment!)

He is happy and manages reasonably independently as long as he keeps in his routine. He can read and write but not at a level to pass school exams. He has done some vocational training.

We think he will be able to move to supported living within the next 5 years. He is at home just now.


I hope that is helpful. I remember when my boy was 4.5, i just wanted a crystal ball so i could catch a glimpse of the future. I was so worried as he didnt seem to do very much at all. He was so passive.

But he's really exceeded all my expectations. I don't worry as much now as I did back then.

anisty

Ps our son wasnt diagnosed with autism until he was 13yrs old. They treated it as a processing difficulty as he was very slow to process information. He had a lot of professionals working with him at primary school.

L_Volunteer

Hey @Rich65. A warm welcome from me.

Have you heard of P levels? Although there have been some changes since 2022, it might be worth talking to your son’s education’s SEND team about this and how it might work for your son. It is also, always, worth identifying your son’s interests and building things around your son’s enjoyment and motivation.

In addition to this, I am wondering if you would like to tell us a little more about how you are feeling and managing at the moment? I recognise this is quite difficult to navigate sometimes.

I hope this at least semi-helps. Please don't hesitate to let us know if there's anything else we can do to support you 

Rich65

I have not heard of P levels I will have a look into them .
We have now had his school place confirmed for September in the SEN school we chose so some good news .

I suppose my feelings change quite a bit 
Sad , happy , why us ? , lucky us hes healthy , what will the future look like ? 

Rich65

anisty said:

Hi @Rich65. Our son is 24yrs old now and our situation isn't exactly the same as yours - but I'm sure it will share some similarities.

At 4.5yrs old, our son presented with global delay and nobody knew what the matter was - he was a puzzle! Chromosomal tests has drawn a blank. He was very slow in talking but his comprehension was that of a 2yr old so he did have some short phrases by 4.5yrs.

He didnt play at all. He watched tv, and liked push button electronic toys but mainly just sat there very passively. He had a pre-school home visitor.


He began at a small mainstream school when he was 5yrs and 10 months old.


If you want to ask more about how that went, do let me know.


Fast forward to now.


He is fully verbal. He has some supported employment is a cafe. He functions round about the level of a 12yr old (that is my own assessment!)

He is happy and manages reasonably independently as long as he keeps in his routine. He can read and write but not at a level to pass school exams. He has done some vocational training.

We think he will be able to move to supported living within the next 5 years. He is at home just now.


I hope that is helpful. I remember when my boy was 4.5, i just wanted a crystal ball so i could catch a glimpse of the future. I was so worried as he didnt seem to do very much at all. He was so passive.

But he's really exceeded all my expectations. I don't worry as much now as I did back then.

That sounds amazing glad things have gone so well .
I suppose for us atm theres the worry of not knowing what the future holds .
Like for most people probably  , learning disability wasnt something I knew anything about before starting my own experience with with my son .

Because hes in a mainstream nursery ,its difficult to talk to any parents in a similiar situation .

L_Volunteer

I completely hear you @Rich95 about how many questions there are and how this is regularly changing. I can almost bet that no day is the same either!

It is really positive to hear you have now had his school place confirmed for September and that is the SEN school you chose.

There is never any uncertainty with these things, unfortunately. However, we are here with you and you do not have to face this uncertainty and unpredictability alone.

It will be really important to focus on the individual development of your son, and not just what your son can and cannot achieve compared to others of the same age.

Often tracking progress this way is the easiest and quickest way to see just how much gain your son has made. 

I can hear how important it is for you to talk to parents/families/carers in similar situations. You might find our children, families and carers section particularly helpful. 

Please don't hesitate to let us know if you wish to talk to us further about any of this or need anything