Autism and GDD

[MamaontheGoGo]

Hi Everyone

I was just hoping someone out there may be in a similar situation to me or has been in my situation that could offer some
much needed guidance. My beautiful son is 4 and was diagnosed with Autism Lv 2 and GDD 2 years ago - he is also non verbal. I’m not sure if it is our area in particular but all I have done is fight fight fight for services and support.

I suppose to put it simply - I am
exhausted. A shell of who I used to be. My entire waking moments are thinking “How can I do better for him?” “What am I missing?” “How can I get him to play with a toy?” “Will he ever talk or be toilet trained?” (Advice on either of those two things would be amazing).

I am having some very dark days and thoughts and my husband and I are drifting as I single parent most of the time due to his work. I’m tired. I’m really tired and can’t remember who I was before this. I just want the best for my son - but I’m struggling to make progress.

I’m so sorry to offload - I just want to be a stronger person for my son and arm him with all the tools I can - I know it sounds morbid but I’m most fearful of what will happen to him when I die (dark day thoughts).

I don’t know what I’m asking for other the. A miracle but thank you if you read this as it helped a little to write.

x

Bless you! I feel you. My husband works 6 days a week, 12 hours a day so I juggle a lot on my own. So my two kids have autism. Eldest doesn’t have as many physical needs; mostly routine/social anxieties. My youngest however is 3 and I’d say developmentally an 18 month old. It is tiresome. She’s not toilet trained either. You are doing all you can do with the hand you’ve been dealt - to put it bluntly. As am I. It’s ok to have down days and feel frustrated and alone. I worry a lot about the future too. I don’t have much advice or tips but I just wanted you to know you’re not alone. ❤️

I’m sorry ❤️❤️❤️
your son sounds similar to my DD
I cry everyday
it’s hard
exhausting
never ending

I’m trying to look into CBT and have downloaded An app so it’s mainly self guided
downloaded another called balance to help with breathing

re DD
have you applied for EHCP and DLA?
is school/nursery supportive?
Do you have any support groups you can join? I find that friends and family can’t empathise but others going through something similar can
do you get any time to yourself? where you can just take time out to do something for yourself?

Thank you both so much for your kind words. We don’t have much support to be truthful. Our families live far away and they are a mix of “he’ll be ok” to “he is just very young”. We’ve had little support from OT because his needs aren’t considered severe despite the fact he chews everything still. SLT has been the worst part of this. They’ve barely seen us in 2 years and all they say is “Wear a lanyard with visuals”. We’ve reached logger heads with them and called them out on their lack of involvement which made things worse as now they never get involved. We are repeating Nursery but he has an EHCP and we have been told a Specialist Setting is best - it’s just a matter of waiting for a place to open.

financially most things are sorted albeit my Carers Allowance was stopped in March for being over by £100 ( I paid this back in for NI so I thought it was ok) I’m still waiting to hear if I’ll get it back.

I just feel like we were given this diagnosis and they said “ok thanks for coming have a nice life. Next!”

If I may ask, do you both use visuals? Have you found anything that works well in terms of toys? Or getting the Penny to drop with going for a wee on the toilet?

x

I have a visual routine for my daughters. Now, then and next. My eldest loves it but my youngest hasn’t been using it for long so only time will tell. Occupational therapy hasn’t been any help. Useless in fact. One appointment face to face which they said not to bring my child to. Then an general online thing one day a week for a few weeks. Now I’ve been discharged because I completed the course. And if I feel she needs more support (ofc I do, they’ve never even met her) I need to do another referral! Nightmare!!

It is indeed super hard. And even when you are getting support / SLT etc it can feel like (or my experience is) it is so patchy with holidays / COVID isolating / change of personnel etc etc. So the answer really is to do what we can at home I guess.

We try using pictos but limited success. Was initially trying to get DD to put hand on picto (e.g. bread to get bread, etc) but she was not engaged with that at all. Now we are more showing her them e.g. before and during 'DD is going to eat bread, DD is eating bread'. Again, limited success but it's fairly easy to keep trying so will do so. Also going to print a few more pictos of things that she actually really enjoys e.g. bubbles - speech therapist suggested she might be more motivated when it's something more exciting to her.

We have signed up for a parents course on Hanen, More than Words. I also read the book (it's expensive but was recommended a lot by speech therapists and also on here). Focused on finding interaction as a basis for communication / speech. That could be one to try. Maybe also a way to involve your DH more - sounds very tough if you're going through most of it on your own.

DD is a little younger than your DC (3) but for now I have decided not to worry about potty training - she does not yet seem to have the awareness of going and will still poo in the night and not let us know.

How is DC's sensory profile? Does he seem very under / over stimulated in certain areas? I tried to read around sensory a bit more to understand it better. I would recommend Jessie Ginsburg (sensory slp) on instagram if you are on (she also has a website) there's a lot of free resources. She also makes the point that if a child with a difficult sensory profile is not 'regulated' then the child will not be able to engage / benefit from speech therapy. So the priority is trying to get them into a regulated zone (alert, but not over-aroused, etc). She explains it better than me!

Not sure if it applies to you but DD's sleep is horrendous and for now I am trying to prioritise helping that - possibly with melatonin. I feel like if we 'fixed' the sleep, that could help in a lot of areas.

Good luck, and I guess try not to look too far ahead (I struggle A LOT with this, but you do hear time and time again that progress isn't linear, things can move quickly and suddenly, etc).

x

Oh yes we have a 6 week block for self care and then our Nursery have to take over - but they are reluctant as it is quite hard work. I do have his OT on speed dial though and thankfully she is readily available to answer any questions. Mostly it’s just common sense advice. As we have the EHCP and the confirmation that a specialist setting is needed, Nursery have almost said “ok we’ll baby-sit until then”. Sad but true - we saw a huge shift in attitude after.

it’s fanatic you have nailed the Now and Next - I think we are a ways off from that yet but we are trying. It’s crazy to have to keep referring yourself as surely this is a life long thing. Resources seem so stretched x

That is so true and you are right x thank you x my son has the classic profile - his GDD is much more obvious then the Autism as he doesn’t have rigid behaviours, meltdowns, transition issues etc. His sensory profile really highlighted sound and movement so he will put sounds to his ears. I have the Hanen set which has been good and I recommend the Play Project by Rick Solomon. Anything to get my son to play will help. I did the PACT course with my SLT but couldn’t complete it because he remained Non-verbal (strange to be “cancelled” because of that as surely communication in other forms continues?!). We have an iPad now with some free choices apps and Prologue2go but I’m not sure we are at that stage so we have pictures of everything plastered all over the house. I’m sorry I don’t have much advice about sleep albeit a friend of mine said she was just firm about bedtimes etc and kept the room very plain and eventually her son settled into it. My son sleeps through mostly but wakes very early (between 5-6am) but this has only been going on since the summer started.

I will look into Ginburgh thank you - my son babbles and some sounds like Mama, Dadda and uperter whatever that means but nothing in context!! Xx

DS needs SALT and OT it should be specified and quantified in section F of the EHCP, therefore must be provided. Then if the NHS can’t, or won’t, provide it the LA must commission independent providers.

When you say waiting for a place what do you mean? Unless wholly independent LA must name your preferred setting unless they can prove:
-The setting is unsuitable for the age, ability, aptitude or special educational needs (“SEN”) of the child or young person; or
-The attendance of the child or young person would be incompatible with the provision of efficient education for others; or
-The attendance of the child or young person would be incompatible with the efficient use of resources.

Being full is not defined in law, and on its own being ‘full’ is not enough of a reason to refuse to name your preference. The LA has to prove the setting is so full admitting DS is incompatible. The bar is high, higher than many realise. Unless the setting is wholly independent the LA can, and must, name the setting regardless of the setting’s objections unless they can prove one of the exceptions above.

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS.

I hear you OP and have been through much of this. Still am to some extent.

re the toilet take him regularly, will he go when you take him? School managed to get DS through the day with minimal accidents by simply taking him every hour or whatever.

Personally I would put all my effort into trying to get him into a good SS that has all the expertise he needs under one roof. We found MS were not interested at all in his development (your word babysit is absolutely spot on) and trying to get SALT and OT in our experience into MS for him was pretty much impossible and even when it was provided didn’t do a thing for him. He would actually do quite well when they went in (paid for by us) but then school moaned he would not cooperate with them thereafter and the TAs they had on board were lovely but absolutely clueless as to what then to do (until we paid for another OT session and then the process would start again.) Like you I just lost the will to live in terms of trying to work out what to do next for him. No one had any ideas. No one was proactive. I felt it was all on me and as you say that is a massive pressure.

he starts a very good SS in Sep so I will update thereafter. It cannot possibly be worse than MS has been for him. I wish we had done this 2 years ago so if I had anything to advise it would be that…fight to get the right placement for him. Hopefully if you can do that it will pay dividends.

Agree 100 pc too with Ahna about the child needing to be regulated. dS never was in MS, too much going on, too much stimulation from other things. Various people told me he could achieve nothing there as he was almost in a state of mania due to external goings on in a busy class of 30 etc.

Carrie DS1 hates pull ups, so in the house he tends not to wear them and we minimise accidents by regularly taking him to the toilet.

Goodness so sorry for the slow reply from me - I'm very new to MN. But in terms of toileting - we are very early days. He is fine to go into the bathroom, sit, pull pants down (even "tuck in" bless him) and he has gone today about 5 times (drinking most of the paddling pool water definitely helped!) and we have only used one nappy today for an outing. I think what makes me think "progress" is that he had this panicked look on his face when he first weed as if it was something terribly happening and now he seems completely ok with it. Nursery haven't really helped with this sadly and OT just said "repetition" so I started by taking him every 15 mins with a visual and now I'm taking him about every 30mins to 45mins and asking him to sit for about 3 mins.

carriebradshawwithlessshoes - I'd love to hear an update after September - I'll keep attached to the thread as we are hoping by next September as well. I have visited our nominated schools and they seem lovely. One Head told me that she had 93 applicants and only 3 spaces and she can only take the children who will "fit in" with the current classes. She was so nice and seemed heartbroken that she couldn't do more. We are looking outside our county as well as a back up. I have been told that the priority has been to those going to Reception and as my son has only just turned 4 he can basically hang on. The need seems so severe here xxx

Personally, I would appeal the refusal to name your preferred school. Unless the school is wholly independent the decision is not down to the HT, the LA can, and must unless they can prove the very high bar for the exceptions, name even if the HT disagrees. The bar to prove the high bar is very high, higher than an “adverse effect”, “impact on” or “prejudicial to”. The SS don’t only have 3 places like normal admissions to mainstream schools without an EHCP. Have you looked at independent special schools too?

Lots of the same issues here. I try not to worry about development so much. If he talks he talks and if he toilet trains he does. I concentrate on him being safe and happy. Although I do have to repeat this mantra a lot when things are tough, which is often, as keeping him safe and happy is hard enough.

Honestly, keeping up with the paperwork for EHCP, DLA, school transport…. He needs his own PA.

i dare not look too much into the future.

How old is your DC sachilars? Has the SS helped in any ways much???

He’s 4, ready for school in September. So not started special school yet.

we really had to fight for the place, but the stay and play transition showed it was worth it.

Sounds exciting! The right SS is so hard to find so that’s brilliant

@MamaontheGoGo my son turned 6 this year and has a diagnosis of autism and gdd, he is non verbal.
My son uses PECS to communicate he is excellent with it and really does well with visuals, he can use and understand now and next boards, visual timetables etc. We have tried the apps for communication but he's too interested in trying to get onto YouTube.
We have not yet got the toilet thing down but I know now it's best to go at his pace, when he wants to learn/do something he will do it, he is really interested in numbers at the moment and can identify by pointing numbers 1-10 in order and if you ask where is 4 he will point at 4.
I am so proud of him, he has done amazingly.
I used to think I've got to do this/that today to help him but someone involved with his care once said to me it's about getting inside his bubble and teaching him things through his interests, best advice ever, it works and most importantly he enjoys it.