Autistic child - feeling low today

[Asmummy]

Hello mumsnetters

My youngest DC is 2. He is showing signs of autism but his paediatrician wants to wait until he is 3.5 for a formal assessment.

DS2 does not communicate in any way or answer to his name but his gross motor skills are fine. 2 childminders gave us notice. He is now attending a nursery for morning sessions (2-3 hours) where the staff is very tolerant of him and his needs. He does not join in any activities. He sits in a rocking chair for the whole time and rocks himself. When staff move him for snacks or nappy changes, he will scratch and bite.

At the same time, he can be loving. He loves really tight hugs from me. He also wants to be with me all the time. I can't afford to stop working and be with him 24/7. I love my child unconditionally but the world will not be as tolerant as I am. Even I find his constant humming difficult at time.

I am not sure why I'm writing this. I am feeling so so low. I can't see a future for my child, and this breaks me.

Tight hugs: look into Body sock and weighted vests and toys for Christmas

If he is happy rocking that's fine he is taking in the room and watching, he may well take part in his own time.
IKEA do spinny chairs or he might like a wobble board.

Humming, buy some Calms or Loops for yourself to drown it out.

Communication - teach him how to sign use Makaton, BSL, your own signs - whatever it doesn't really matter it uses a different part of the brain to speech and will reduce frustration on his part.

Buy some PECS style cards from Etsy and make a communication board he can point to if that works better. Photo copy and laminate them so you can have some out and about and at other people's houses - GParents etc

It's trick but even with an autistic child it is still true that "this is a phase, and this too shall pass".

I feel your pain.

You've been robbed of your baby growing up as you expected.

You've been given some good advice above. I have nothing to add, sorry.

I’m listening to my 22 year old making noises in his wheelchair. Wasn’t how I planned my late fifties to be.

You won’t feel sad every day. You’ll appreciate every tiny step he makes.

X

Hugs OP. I have an autistic child, although it was not at all obvious when they were 2, so we probably have different challenges, but still, I sympathise.

A few practical suggestions:

• Claim DLA. The first step is really quick and easy, you just call the helpline to request a form. If and when you eventually get DLA, it will be backdated to the date you called. The form is long but if you need help completing it there are organisations that help. https://contact.org.uk/help-for-families/information-advice-services/benefits-financial-help/disability-living-allowance/
• Talk to the nursery SENCO about the process for applying for an EHCNA (needs assessment) - it might be that he needs an EHCP and specialist provision.
• Ask SENCO/GP if it's possible to refer him for an Occupational Therapy assessment. An OT might have some helpful advice about sensory input to regulate him.

Are you in the UK? If so, ignore the paediatrician and start the process. It takes a long time and if you can have a diagnosis and an EHCP in place by the time he starts school, it would be an enormous help to him. You don't need the paediatrician - nursery can refer and support you in navigating the system.

Hi OP! Your child sounds very similar to mine at that age. First of all, please take heart- you are at that horrible knowing-but-not-confirmed stage and everything feels bleak and stressful. Secondly, your child is very young and is likely to change a lot as time goes on!

Practically, I'd insist on getting the ball rolling with a diagnosis. People say it doesn't matter and to support the child, not the label but we found it so much easier to access support with a diagnosis. Within 2 weeks of it, we'd received appointments for speech and language and occupational therapy and a parenting support class...all the stuff we'd been trying to access for ages with no luck. Also got approved for DLA and got our EHCP finalised which brings me to my next point...start getting an EHCP in motion. I'd just do a parent application; don't wait for nursery as in my experience they aren't the best at getting it done. Be warned: you will be declined and you will be told your child is fine in mainstream. Do NOT accept this - appeal, fight, keep pushing. You will get there. Research specialist provision in your area and see what you think would be best for your dc. SEN provision is woefully lacking but it does exist and you can get a place by fighting hard enough and early enough. Finally - your son is obviously very sensory seeking with the rocking and tight hugs - have a look at some different resources you can get to help support this e.g. weighted blankets and clothes. Helping your son remain regulated throughout the day will see a huge improvement in terms of aggression and frustration - you just need a bit of trial and error to find what works best for him.

My son is 5 years old now and so different. No longer in his own world - communication is coming slowly albeit he remains non verbal. He's happy and safe at an SEN school that caters to his individual needs. He attended nursery from 12 months old so please don't feel bad about leaving your son - mine certainly didn't suffer for it and actually settled into school very easily as he was used to the routine so think it actually helped! My son is a beautiful little boy and while I agree the world is a scary place, I have found a lot of support in local charities and support groups for children with additional needs - have a look on Facebook and even ask nursery and your health visitor if any such groups exist near you. I'm also heartened by the progress he is making - who knows how he will be in another 5 years. It's hard but I try not to worry about the future and just make sure I'm doing everything I can now to best support him. I think that's the best we can do. Good luck with everything!

My son presented a lot like yours apart from the scratching and biting. He was also dyslexic, dyscalculic, and dyspraxia. I felt the same hopelessness that you do at your DS age. He had SEN support an infants but the funding was reduced in Y5. I sought legal advice and appealed successfully and managed to get him into an IRU for the rest of his education. He got 4 GCSE’s went on to do 2 NVQ’s. Obviously had engineering and electrical skills, did an electrical HNC, went to residential college for his 17th edition electrical installations, had various temp jobs in retail, volunteered at BHF then at a charity that recycled computers. Passed his driving test a finally got an electrical apprenticeship which converted to his first permanent full time job at age 30. He has a small bunch of friends and has just made me a birthday cake!

Believe in your son. Nurture his interest and skills, fight like hell for him, refuse to take no for an answer and push the boundaries and you will be rewarded

@Singleandproud thank you so much for this post. I will implement everything you suggested. We have tried Makaton without much luck so far. We'll keep on going and I'm very keen to try the cards as well. Thank you.

@Anewuser I do really treasure all the tiny steps. I think I'm OK with him always being with me. I hope your son is ok. x

Thank you. His speech therapist did tell us to claim DLA. I think I've been delaying it because I was hoping for some kind of miracle. Nursery did say we need to claim DLA for them to get support too, I think.

I'm definitely going to ask about the OT too, thank you.

Have you seen the swivel chairs for stimming? Just to add to Christmas list ideas, great advice already above.

https://www.debenhams.com/product/aiyaplay-spinning-chair-for-autism-sit-and-spin-coordination-balance-red_p-baddd534-d417-4a2c-a1d5-5cdf1262793e?colour=Red&size=One+Size&istCompanyId=76f7277d-6e78-4dc2-aaff-1eb77fae16b0&istFeedId=258a4886-8f3c-47ef-9369-d1eda8d84501&istItemId=qxiwmpmqa&istBid=t&gad_source=1&gbraid=0AAAAABevdS40k-q71t86QB-744_dc7j6e&gclid=EAIaIQobChMI3IOahJ6-iQMVMo5QBh26JBm4EAQYASABEgKOvPD_BwE&gclsrc=aw.ds

Yes, I am in the UK. The paediatrician said that assessments are not accurate until 3.5. DC2 is on the waiting list and will be assessed at 3.5 and his EHCP will be ready when he starts school. He will need 1-2-1 support.

PECs is often more successful as a first communication strategy.

If you have portage in your area it's worth looking into this as it's a good service.

www.mencap.org.uk/advice-and-support/education/portage#:~:text=Portage%20provides%20home%2Dbased%2C%20early,talk%20about%20their%20caring%20experiences.

National Autistic society also run various support groups for parents - diagnosis not required as they know it can take a long time. If you are able to get to one you may find useful ideas and or services.

Hi OP, we were told our ds had autism at about 18 months (he regressed) and he was diagnosed at two years old. We got a statement in place and he had speach therapy, occupational therapy and a 1:1 in place at nursery. We also kept him in nursery for an extra year then he started reception (kept a chronological year behind). Nursery was given a budget before the statement was in place.

It's horrible, I won't lie. Ifthings play out as are in your head, you'll grieve. Please remember nothing, absolutely nothing is set in stone. You and your child need support and he needs as much support in place as soon as possible.

Apply for an ehcpa yourself now. Use ipsea and sossen. You may have to appeal if the la decline, please do not worry- you'll be fine. The threshold for a needs assessment is very low and I'm sure with what you've said your son will meet it.

Getting the assessment will help you massively. You can request assessments of reasonable needs. You need to request an autism assessment, a speech therapy assessment and an occupational assessment (inc sensory) as a minimum- these are all reasonable. His needs cannot be known if they aren't assessed.

For the speech therapy assessment request an AAC assessment - high-tech. Have a look at prologue and Words for life (watch videos and Google, I'll find you some links and post). It's vital to get some form of comms in place started asap. It won't replace or stop him becoming verbal but will support. The LA may push pecs but they can be used in addition. He will likely need a total communication approach (again google).

Ot- he will very likely have sensory needs which will impact everything he does. These need regulating. He won't be able to learn anything until these needs are met (if he has them). There are many other conditions that go along with autism that ot deals with too eg hypermobility and dyspraxia. He may not have these but how do you know until it's looked at?

You may be entitled to help with nappies and further down the line home adjustments.

If he has dietary restrictions ask for a dietitian too.

as part of the ehcp process you are entitled to social care support- hes only little but it may be somethig to think about later.

having the ehcp in place for school will help with placement.

Another poster mentioned dla. Yes apply. My ds had high rate care from two and high rate mobility from three (under serve mental impairment- see if you can get a prof to support the application and use that language in the letter). The money will really help you.

You are not on your own, look up your local parent carer forum or join some Facebook groups (go for ones specifically about severe autism).

You will be OK, it's a hell of alot of info all at once but you will be OK x

As part of an ehcp assessment they can't keep you on the waiting list. He would need to be assessed within the legal timeframes of the needs assessment.

https://www.ipsea.org.uk/ehc-needs-assessments

https://sossen.org.uk/sen-journey/needs-assessment/

Sossen have some booklets te tribunal one is especially good for legalities but you'll need the assessment one too.

https://aacandautism.com/

https://m.youtube.com/shorts/Scbr_q9Cjc4

https://lampwflapp.com/

https://www.google.com/search?ie=UTF-8&client=ms-android-samsung-rvo1&source=android-browser&q=objects+of+regerence

(Objects of ref to help start comms)

I would seek a second opinion on diagnosis, DNephew was diagnosed at 2 and it opened up more support, inc SEN nursery and a specialist school. He’s now 5 and thriving.

@Asmummy An EHCP takes roughly 9-12 months to complete, such is the current backlog.

A child doesn't need a diagnosis before an ECHNAR is completed and an EHCP applied for. Referrals to NHS speech and language and educational psychologists have similar waiting lists.

Please ask nursery to refer ASAP and to start the ECHNAR/EHCP process. EHCPs are awarded according to need, not diagnosis.

@Asmummy 1:1support doesn't mean he will have someone with him the whole time he is at school - it is very rare that this happens. It is more likely that he will be given 1:1 support for a percentage of the school day, in order to complete specific tasks.

Is there a specialist (SEN) nursery in your area? If there is, do everything you can to get him in!
He will benefit so much more from being in a setting that understands him than a mainstream one. And I'm speaking from experience.

Good luck! It might take a while but things can get better!

Just a suggestion, start with only one Makaton sign, maybe "more". It took my son months to use it for the first time.
But once he did, he was more willing to learn others.

My ds is at a special school and has constant 1:1 inc breaks, lunches and non structured times and 2:1 when off site (trips) as specified in section f of his ehcp. He had this at primary school too (2:1 off site from about year 4). The ta's training was also specified with slt and ot specified and quantified too.

OP get the ehcp right as early as possible and don't let anyone but the law tell you what can and cannot be done. You're going to be overwhelmed so I'm conscious of telling you too much but the ehcp is only worth what is detailed in it. Section b is needs- every special educational need must be detailed. Section f is provision- provision must be specified, detailed and quantified to meet every need. There mustn't be any doubt as to what must be provided. Words like "word benefit from", "upto", "for example"... are worthless it must be worded without doubt eg x will be provided for y hours a day, the ta supporting child will be trained to level m in d qualification, the child will be supported by a dedicated ta on a 1:1 basis trained in... for r hours a week, the child will be supported during all unstructured and break times by a dedicated member of staff trained in....., 52 hours of speech therapy will be provided per year by a slt trained in...... usually 1 hour of direct therapy per week, an additional v hours will be funded for training of staff and parents supporting child and creation of resources, f hours will be funded for the creation of a report for the annual review and k hours funded for attendence.... (I gave up on speech marks).

You can only enforce the provision if it is written without doubt. The la is responsible for the provision not nursery or school. If they don't have the funding you threaten judicial review and it is usually provided.

I think our family got to grips with the legal side early on but I wish I had known from the outset. Money is tight everywhere so it matters more than ever, don't let anyone say your child doesn't deserve or shouldt have. They are entitled to an education. Slt and ot is vital to education and as such is treated as education and not health.

With Makaton, concentrate on one at a time and help his hands make the sign until he does it himself.
More
Eat
Drink
All gone / Finished
Home

Whichever one of those is of the most useful, start with that. If he can clap / wave he can sign.

Use the Cerebra guide when completing the DLA form. If DLA is awarded, you will get 15 hours funded nursery. And if awarded, the nursery can claim Disability Access Funding once DS is 3.

Request an EHCNA yourself now. On IPSEA’s website, there is a model letter you can use. If you don’t have to appeal, the legal timescales is 20 weeks. If LAs breach the statutory timescales parents can force the LA to act. However, many do have to appeal, some more than once, and that takes time.

There is early years inclusion funding the nursery can apply for. Depending on where you live, the nursery will either be able to apply now or will be able to once DS is 3.