So proud of my son!

[SinkGirl]

I’m so excited, I have to share!

My twins are 4, both are autistic and non verbal but DT1 is absolutely obsessed with the alphabet. Until recently neither of them showed any signs of understanding spoken words at all.

This morning he brought over his box of magnetic letters and starting handing me the letters to get me to say words starting with each letter.

When I said a is for alligator, he tried to spell alligator.

Then he went through each letter and spelled ball, cat, dog, elephant (but left out one e) and fish when I said the words.

After that he stopped spelling the words I said and started spelling other words - goat, house, jump and key. He must have gotten these words from books. I thought he was starting to read but still amazed at how much he can spell.

I’m so excited - I went through a long legal battle to get them into the right school and they’re both coming on so well. They both understand so much more and and now DT2 will give me a kiss when I ask for a kiss so he’s understanding more too.

DT1 has shown he can copy words and spell some words from memory like numbers, but this is the first time he’s spelled words from speech.

Here’s his attempt at alligator - I’m actually pleased he makes mistakes in some words as it suggests he’s trying to remember how to spell them and not just regurgitating things he’s remembered.

I have no idea if this is age appropriate and just seems advanced because he is delayed everywhere else but I’m so proud of him - it’s so much harder for him to learn things and he is trying so hard.

We had two years where we just saw no progress at all and now they are both coming along so well. I feel really hopeful that they will be able to learn to communicate which means life will be much easier for them.

That was the best thing to read! Well done to him. What an unbelievably exciting day. Such good spelling too!

My son never developed speech at all, the day we saw him score a normal range score on a visual IQ test gave us a similar boost! He still struggles with language so much ( but not speech, he can make all the sounds). Currently investigating cerebral folate deficiency as a cause of language issues.

Aaaw! Amazing!! That made me tear up.

Do you mind if I jump into this thread and ask about your legal battle? My nephew in non-verbal. My brother has delayed his school for a year, so he is starting this September. The specialist schools are all booked so they are saying he has to go to the local primary. My brother has been sent from pillar to post. On one hand he is pleased that they think my nephew will be ok in a mainstream school. But on the other hand he just doesn't see how. My nephew is non verbal, will not listen to instructions or respond to his name and will not sit still for a second. Is there someone else they should be talking to or another route they should take?

So sorry to gatecrash. I was just immediately intrigued as to what you'd been through to get them in the right place. Thank you. X

Fantastic, so happy for you!

That’s awesome op.

My ds is 5 but in reception. Also asd but what would have been aspergers previously, and his teacher says he is in top half of class for reading/writing/spelling. He would spell alligator something like that- particularly the phonetic r without the o at the end, if that makes sense.

I have nothing useful to say in how to use these skills to help with future communication, but everything crossed for you. It can only be positive.

@Bellabelloo

Aaaw! Amazing!! That made me tear up.

Do you mind if I jump into this thread and ask about your legal battle? My nephew in non-verbal. My brother has delayed his school for a year, so he is starting this September. The specialist schools are all booked so they are saying he has to go to the local primary. My brother has been sent from pillar to post. On one hand he is pleased that they think my nephew will be ok in a mainstream school. But on the other hand he just doesn't see how. My nephew is non verbal, will not listen to instructions or respond to his name and will not sit still for a second. Is there someone else they should be talking to or another route they should take?

So sorry to gatecrash. I was just immediately intrigued as to what you'd been through to get them in the right place. Thank you. X

Your brother needs to speak to local parent partnership Ipsea Sos sen Etc who can advise what letters to write etc

(Went thru lots meetings and presentation of case . Got friendly polite terms with lea. Stay calm and polite. Gather evidence.

but never had to go to tribunal. Ds went to independent specialist autism school secondary paid by lea. Local special school was helpful in saying they could not provide what he needed.

For your nephew Sending child to mainstream doesn't mean they think he will magically develop and learn.. by sounds he needs specialist input whichever school.

@Bellabelloo

Aaaw! Amazing!! That made me tear up.

Do you mind if I jump into this thread and ask about your legal battle? My nephew in non-verbal. My brother has delayed his school for a year, so he is starting this September. The specialist schools are all booked so they are saying he has to go to the local primary. My brother has been sent from pillar to post. On one hand he is pleased that they think my nephew will be ok in a mainstream school. But on the other hand he just doesn't see how. My nephew is non verbal, will not listen to instructions or respond to his name and will not sit still for a second. Is there someone else they should be talking to or another route they should take?

So sorry to gatecrash. I was just immediately intrigued as to what you'd been through to get them in the right place. Thank you. X

Of course I don’t mind! Sounds like your brother has been fed the usual local authority bullshit. Unfortunately just because they are saying he needs to go to mainstream doesn’t mean they believe he will cope there.

Has your nephew already been assessed for an EHCP? If not, that’s the first thing they need to do ASAP - there’s a template on the IPSEA website and they can apply themselves. If he’s non verbal and struggling with all those things, he more than meets the criteria for an assessment.

Once the assessment is done, and a plan issued (sounds as though he should get one), you then name the school you want. Them saying the schools are full is not a sufficient reason to refuse a place - they would need to prove that admitting the child would have a detrimental effect on the education of others. Most specialist schools are full all the time, most also go over their numbers a lot of the time.

If they insist the special schools are full, or insist they want to name a mainstream school, he would then need to appeal to the SEN tribunal. We had to do this because the LA wanted to name a school for profound learning disabilities and we don’t believe they have learning disabilities. We had to pay for private educational psychologist reports because the local authority ones were very poor (which is sadly very common). In the end we won and got them into an ASD specific school - just a shame they lost nearly a year of the right support while I fought the process.

If he’s due to start in September then they really need to be making that EHCP application now - they could send it off tomorrow, it doesn’t take long. It’s supposed to take 20 weeks from applying to a final plan being issued, but can take longer if they refuse to assess or refuse to issue and you have to appeal.

That’s a very very brief account but please message me if I can help. It breaks my heart to think of a non verbal child like my boys being sent into mainstream when it’s clear they won’t be able to cope or learn anything - I’ve met too many children who’ve been in this situation and they’ve ended up refusing to attend school completely or their behaviour has deteriorated. The right support needs to be in place as early as possible.

Your local SENDIASS is a good place to start - they are supposed to be independent but are funded by LAs so not all services are great. Ours is luckily.

IPSEA is an amazing charity with tons of info on the process on their website - they also have a helpline which you can book a slot through their website, but they fill up quickly so you have to stalk the booking page through the day.

You should be able to find enough info on the IPSEA website to start the process and understand what should happen - you may then need more advice as things go on.

Of course it’s possible he’s already got an EHCP and they have not named a specialist school because they’re all full. If that’s the case, you’d need to call an emergency review, ask for the school named to be changed and if they refuse file an appeal (unless the final plan was issued in the last two months, in which case you can appeal now).

I hope that makes sense - it’s a horrible stressful and obstructive process but it’s worth the battle!

@SinkGirl

He has PECS but only uses it for tangible single words (eg a food item, or bubbles). Supposed to have an AAC device as part of his EHCP but the LA are messing the school about.

Exactly - it’s funny to be reassured by errors but it definitely seems to be like he’s trying to spell things out.

He’s such a brilliant little thing - very hard to actively teach him things as he doesn’t mimic others or anything, so everything he knows he has figured out on his own, whether it’s spelling or head stands. So all credit goes to him, but also the staff at his school who are clearly doing an amazing job based on how much progress he’s made since he started. Same for DT2 although he’s more complex but he’s still doing so well.

There are,a lot of studies now on

Emergent literacy AAC

Google it

Or " literacy and aac "
Or spelling and aac studies

Also sign up for communication matters newsletter

Aac users make weird and wonderful connections eg
My ds pre covid typed "went to winter one oh land"

I e winter "wonderland "

We also went to" robot dye bye pan "

Robert dyas to buy a pan

It is fascinating

Thank you SO much @Embracelife and @SinkGirl . I don't know what some of the abbreviations mean but I'll Google and pass on all of your messages.

He hasn't had a diagnosis yet. Again they seem to be passed from pillar to post and palmed off with it might be autism or it might be delayed speech and he might start talking perfectly any time soon. It's so tough as they are obviously keeping optimistic. But school time will come round really soon.

Thanks everyone for sharing my excitement with me! I’ve added some videos to their tapestry account and I know their teacher will be so happy - she gets so excited when the boys do well :)

Currently investigating cerebral folate deficiency as a cause of language issues.

That’s very interesting - when the twins were younger I found I had severe folate and vitamin D deficiencies. I’ve since read some research into a potential link between maternal vit D deficiency and autism, and I know folate deficiency has made me feel shocking - I feel much better and my brain works better when I’m taking a high strength supplement. By cerebral folate deficiency, do you mean cerebral damage caused by folate deficiency, or a brain-related cause for the deficiency (like can happen with thyroid issues related to the brain rather than to the thyroid)?

www.communicationmatters.org.uk/

Thank you @Embracelife - I will look into your suggestions :)

@Bellabelloo who told your brother that the specialist schools are full? Just wondering whether this was the local authority so he’s already had some contact with them, or somewhere else?

A diagnosis is not needed to get an EHCP (education, health and care plan - this is a legal document that outlines his strengths and needs, the provisions needed to meet his needs and the outcomes they are aiming for). It’s based on the needs the child has, not diagnosis.

It starts with an assessment of his needs - so an educational psychologist and a speech and language therapist should also be involved. There may be other assessments needed eg occupational therapy if he has sensory issues.

I would encourage them to read everything they can about the EHCP process and not believe a single word the local authority say - always check the IPSEA website or get advice as they usually lie.

Have they applied for Disability Living Allowance yet?

It’s so stressful at this stage and a huge learning curve. I had no idea about any of this stuff two years ago and it has been a long fight. I also did the online SEN law training on the IPSEA website during the first lockdown so I could represent myself in the tribunals and so they couldn’t get away with telling me lies 😬

@Bellabelloo

Thank you SO much *@Embracelife and @SinkGirl* . I don't know what some of the abbreviations mean but I'll Google and pass on all of your messages.

He hasn't had a diagnosis yet. Again they seem to be passed from pillar to post and palmed off with it might be autism or it might be delayed speech and he might start talking perfectly any time soon. It's so tough as they are obviously keeping optimistic. But school time will come round really soon.

Jump on the spelling and push this as means to communicate thoughts with needs AaC eg gridforipad Also typing programmes tge SLT at school shoukd know "Writing with symbols "might be good make tge font size large to start

Clicker
Can he manipulate ipad?

I'm so, so happy to see this!!! I don't know the first thing about speech delay etc, but this looks so good!!! Understanding language is surely a huge step!!! And I'm so pleased you've had positive developments, whenever I read your posts it's clear how much you advocate for your boys but it doesn't sound easy.

Ask school if they have widgit first keys 3

This is so lovely.

This is wonderful to read. I'm so pleased for you all. I remember reading many of your threads and really feeling for you as your situation sounded so tough. I'm so pleased there's bright spots too. You must be doing an amazing job.

Lovely post ❤️

What a lovely post. No wonder you're proud. Thanks for sharing. 🥰🥰🥰

Brilliant, you must be very proud!

@sausagerole

This is wonderful to read. I'm so pleased for you all. I remember reading many of your threads and really feeling for you as your situation sounded so tough. I'm so pleased there's bright spots too. You must be doing an amazing job.

I don’t know about that! Flying by the seat of my pants mainly, but they are doing so well.

Thanks everyone for your lovely comments, so nice to share something positive :)

Well done little one.....

SinkGirl - if you do a google search for ‘folate receptor antibody test language development’ you should get a hit for both a research paper by Michael Frye and an article in the BMJ that will answer all the questions better than I can. Sorry o can’t seem to work out how to link directly on my phone and my laptop is broken.

We are currently having ds’s antibody receptor status tested privately, although he doesn’t present typically for CFD the doctor said it was definitely worth ruling out, especially as at seven there is still time to make a difference. Luckily now there is no need for a lumbar puncture to assess. We contacted Dr Raemaekers privately.

@SinkGirl I don't know who told them the specialist school was full. I assume the school! They only have one near them. He was meant to start school last September but didn't get in and as he's a summer baby and would be young for his year they decided to postpone to this September and hoped they'd get a place, but they didn't.

I'm passing all of your and @Embracelife 's advice and help this morning.

Thank you both, so, so much. X

You need an EHCP to access specialist schools as that’s where the funding for them comes from. So start there as soon as possible - there may be more options they are unaware of, like independent mainstream or specialist schools, or one slightly further away.

So yesterday I wasn’t sure whether he was intentionally spelling the words we were asking for or whether it was a coincidence but today I asked him to spell apple and banana and he spelled both perfectly, so he’s definitely responding to spoken words which is amazing!

Better stop swearing around him 😬