Concerned dad of non verbal child

Hi, I am the mum of an autistic 23 year old son. He was diagnosed at 3 having hit developmental milestones until 1.5 then suddenly regressed.

At the time there was little support within the nhs  for speech therapy but I helped him to speak using the PECS system (picture exchange communication system)  of picture cards. I trained as a PECS instructor to do this but the cards are so helpful I don’t think the training is really necessary to help your child - you need patience and common sense. You can start start with a couple of cards ( favourite foods or toys) and eventually build up to constructing short simple sentences.

there are other similar systems available and I believe the costs have come greatly now but you could start with a few pictures clipped from magazines to see how you go. It took Alex a while to speak but it really helped with his frustration at not being to communicate - if he wanted an apple he selected the picture and gave it to me.  Predictably, once he learnt to speak I couldn’t shut him up :-)

if you think there is something wrong see your GP to get a diagnosis rolling as early as possible. Once you have that you can get a statement if needed and get control of his education. I fought really hard to get Alex into the best school in the county but he thrived there and stayed until he was 18.

Alex struggles to make friends face to face but has many online friends, has just got his first job and is hoping to learn to drive next year.  It was hard for me letting him to be independent but he was desperate so we did it in small steps - catching the train to college for example ( it was hard for me just letting him go to college after 14 years at his special needs school) but he loved it.

Getting a diagnosis of any disability for your child can feel shattering - we have so many expectations for them - but Alex has changed my life in so many positive ways and is the kindest and most thoughtful of my 4 children and really, what is “ normal” anyway?

Good luck, you sound like a wonderful dad and I really wish you well x

Thank you
I appreciate your response
I'm so glad your son is doing so well. He's lucky to have you, as you're lucky to have him to :)

You mentioned the PECS system. Is there set of cards that you would recommend that i get? Looking online, there's quite a selection.

Additionaly, in terms of schooling, what school did he go to and at what age? My son has just started nursery at primary school. The school are aware of his condition and are liasing with his Paediatrician and Speach Therapist. However it feels like covid has slowed down the cogs of the health system....the worst time possible for my son.

Its good to hear that he found his voice. Even though he doesn't shut up, i'm sure you don't mind it. Congratulations on him getting his first job! He can now enjoy working....like the rest of us lol
My son has changed my life. I just want him to be the best he can be....so everyone else can see how special he is

Your message means a lot
You're a fantastic role model to your kids x

Hi, at the time I bought everything! I was desperate to help him but to be honest I didn’t a lot of the cards. I’d recommend “foods” + maybe a family pack and toys or activities - I’m not sure what packs they have but if you can get some covering these areas it’s a good start. If he’s going to nursery or school they used to make a ring binder so he carry some with him when out and about. 

I was lucky, I live in West Sussex and there was a great special needs playgroup which he attended and I helped out at - other parents there were brilliant for advice ( I passed on the PECS equipment to another mum when he didn’t need it anymore.

I had to fight for it but got him into a special needs school in burgess hill ( now called Woodlands mead) it became a centre of excellence in sussex for autism and went up 19years old. 

I won’t lie, you become very hardened in the process to get the right education - you get told no a lot but just have to stick to your guns and fight to get what your child needs. The Autistic society has a lot of info on disability allowances and entitlements - claim everything you can, the money can ensure your child ( and you) get the support you need.

I think the lack of professional support due to Covid has done a lot of damage to children and families - there is so little at the best times - but hopefully things will improve as we come out of this now. Keep fighting and stay positive - these children deserve to reach their full potential. It is really hard but the rewards are massive.

X

Hi, at the time I bought everything! I was desperate to help him but to be honest I didn’t a lot of the cards. I’d recommend “foods” + maybe a family pack and toys or activities - I’m not sure what packs they have but if you can get some covering these areas it’s a good start. If he’s going to nursery or school they used to make a ring binder so he carry some with him when out and about. 

I was lucky, I live in West Sussex and there was a great special needs playgroup which he attended and I helped out at - other parents there were brilliant for advice ( I passed on the PECS equipment to another mum when he didn’t need it anymore.

I had to fight for it but got him into a special needs school in burgess hill ( now called Woodlands mead) it became a centre of excellence in sussex for autism and went up 19years old. 

I won’t lie, you become very hardened in the process to get the right education - you get told no a lot but just have to stick to your guns and fight to get what your child needs. The Autistic society has a lot of info on disability allowances and entitlements - claim everything you can, the money can ensure your child ( and you) get the support you need.

I think the lack of professional support due to Covid has done a lot of damage to children and families - there is so little at the best times - but hopefully things will improve as we come out of this now. Keep fighting and stay positive - these children deserve to reach their full potential. It is really hard but the rewards are massive.

X