Really struggling with 3.5 year old with suspected ASD / ADHD

[ReySky]

Apologies I think this will be a little long. Not sure where to start. DS1 is 3 and 8 months. He has always been very hard work and I've known since he was born there's something different about him. My friend was shocked when I showed her a video of him as a 4 week old and described him as having electricity running through him as he didn't ever stop moving really fast.

I've recently spoken with a health visitor who has referred him to Paediatrics to do a proper assessment, but she was quite taken aback at how he was. It was a home visit lasting almost two hours and the entire length of her visit he was running around and jumping off sofa, constant humming, shouting and making strange noises. She did a couple of questionnaire things and he was well over the threshold for which they make a referral.

He runs off constantly when we go out. When I pull up anywhere in the car he will start shouting "get me out". Before now has managed to escape car seat and ran across a car park, obviously then installed further safety clips on his car seat. He seems to have no awareness of danger.

Has numerous tantrums a day, some days I count more than 20 by midday. The day always starts off with a tantrum if I am downstairs with DS2 who wakes before him, and DS1 will appear at the stairgate upstairs screaming "get upstairs now!"

He makes noise constantly, and I really do mean constantly. He is always humming or singing Christmas songs or nursery rhymes really really fast, or he makes strange noises, the only way I can describe them is like a Native American Indian call! He does flap his arms and often will hop on one leg.

He often pushes / hits his baby brother, this started when he was born which I understood to be initial jealousy and I always strive to give him one to one time and make a big show of him having something that's just for big boys. He gets very angry with his brother and screams in his face, snatches off him etc. Obviously I don't leave them alone together, but it makes me very on edge. I've tried sticker reward charts without success.

He always wears a woolly hat, will not leave the house without it and screams if I suggest taking it off, it doesn't matter how much I explain it's hot etc. I've had him choose summer hats for me to buy but he will not wear them. It's not a specific hat though, he has three woolly ones but he has to wear one at all times.

Hair cuts / washing / nail cutting are all a huge battle resulting in lots of crying and screaming no matter what approach I've tried. He hates getting any dirt or water on him and will start screaming for a wipe / towel. He is not yet potty trained.

Getting him to sleep is a nightmare and I dread bedtime from the minute I wake up every single day.

He constantly wants me to entertain him and never plays independently. I do resort to screen time more than I'd like but even that doesn't hold his attention too long. I try setting up activities like painting, baking etc but he runs off after about twenty seconds. I find it easier being out with him so do take him to parks, play groups, soft play, the woods etc as much as I can, as I find it hard being at home.

At play groups he's always the one running around the room at story / song time.

Food has always been a battle. Dinners go untouched and he favours anything beige, but even that he hardly touches. I know fussiness at this age can be normal, but he really doesn't eat any meals. I've tried getting him involved with shopping, prepping / cooking food but it doesn't work.

His speech is great and I have no concerns there.

It goes without saying that I love him to bits, I give him lots of affection and tell him every day I love him, but I am so exhausted looking after him and his 1 year old brother (who never sleeps, but that's a whole other thread!) and never getting any respite. He is due to start nursery in September for 15 hours a week so that will help a bit, I hope. He did do some settling in sessions at another nursery but they went awfully and as we were moving house soon I decided to hang fire.

His dad, my husband of 17 years, left me when baby was 9 weeks old, and rarely sees them and is not allowed unsupervised access due to drug use / issues with his moods / mental health. I don't have anyone for support, my mum is retired and lives round the corner, she will occasionally have him for an hour but not both of the boys which I don't blame her for. She gets very stressed as he jumps everywhere etc and she doesn't want to take him to a park or anything because he runs off and she can't keep up. I just feel so tired and drained,

I'm just wondering if anyone has been in a similar position and has managed to find any coping mechanisms, and light at the end of the tunnel, really.

Thanks for reading and sorry it's so long.

Four Grandsons all diagnosed ASD all different.. now age 18 16 15 and 8.. 3 eldest to eldest daughter.. youngest to youngest daughter and all have at least four traits you have described .. once eldest was diagnosed age 7 ish.. was very easy to get others diagnosed.
You will learn each day different new things.. you will learn how to parent him.. there is no set rules.. everyone is different and unique.. a diagnosis will give you some peace but it won't take away the problems.. there is many many forums / associations/ people in the same position.. my daughter learnt by trial and error... ended up home schooling her eldest and youngest.. ( for the sake of their mental health.. once they reached high school age) youngest daughter started home schooling after his first two years ... and neither have looked back and l can't begin to tell you the benefits for the Mums the Grandsons and me.
Eldest has just done two years at college ( yes with no high school) he starts uni in September and has a g/.. yes he still has problems.. does stimming.. big meltdowns.. but he's come a long way.
They all still have big food issues.. youngest the worse.. older three got better as they got older.
The meltdowns are awful.. scary.. hurting/ fainting..
But they are happy ...adjusting.
School when they tried it was the worst part.. ( coke bottle effect every day at home time) screaming/ hitting/ biting/ running away.. themselves and their Mums.
So our coping mechanisms was home education.. even with three at home.
Until college age.
ASD children prefer adult company to that of their peers.

Thank you, that's really interesting as I've considered home education but he is quite sociable and does seek out children so I'm not sure if it would be the best fit for him, and not sure how I would finance it anyway. I will have to see how it goes when he starts school next year.

Tantrums or meltdowns? Have you tried keeping a detailed diary to try to spot triggers?

Sounds like DS has some sensory issues. Some of the activities in this booklet and on this website may be helpful. For the eating difficulties have a look at ARFID.

Do you use reins when you go out? A buggy may also help. Look at a crelling harness for the car.

When DS starts nursery, speak to them about how they can support DS. If they need further advice they can ask the Area SENCO. You could also consider requesting an EHCNA - IPSEA has lots of helpful information about this, including a model letter. Unless you actively want to, I wouldn’t home educate. If attending school isn’t appropriate you can look at EOTAS via an EHCP. That way the LA retains responsibility.

Home Start may be able to support you.

I could have written this except I have one DS. He doesn't run off in a crowded place, like a supermarket, but he will in open areas.
No support either, I know how hard it is.
You'll learn, in time, how to manage. So with mine, the constant climbing, jumping and throwing things, I'll take him out. Doesn't matter where, just outside and release the energy. Trampoline and slide are god send.
Meltdowns occurred a lot of the time from a tantrum, I spotted the signs, I can stop most tantrums before they begin. Just acknowledge, explain and move on. E.g not wanting to get out the bath 'you asked for a bedtime story, you need to be in bed for bedtime stories. Let's get dry, get your pyjamas on. What story do you want?'
It took me forever to learn and I'm constantly adapting. He'll struggle with one thing, overcome it, struggle with something else...
Diagnosis path has been horrendously long. Prepare yourself for that.
Make nursery aware, straight away, they can support referrals, come up with a care plan for his time there and I found with mine, they also have great advice to pass on.

What is EOTAS?

This sounds a bit like my son who had ASD and GDD, but he doesn't talk and is very behind peers. We were up from midnight until 5am with him. He slept a couple of hours and now is like this again. We as parents are hanging out of our arses though. Strongly suspect ADHD too.

While you are on this thread Overtaken, are you able to confirm if my mainstream my son is starting in September can exclude my son on the grounds of not being able to support him? You seem very knowledgeable in this area. Aside from meeting the deputy head and SENCo we haven't had any plan to support his needs, if anything they have expected us to make adjustments as family instead (had to change hours at work due to refused wraparound care and caterer would not supply a packed lunch as I though this was the least messy option). I'm not hopeful they will cope with him and try to exclude. We both work so we would lose one of our jobs.

OP I would start the ball rolling with assessments and putting in an EHCP request for support. My nursery were also able to access some other funding for my son too that wasn't EHCP related. Your son sounds bright, but might have sensory issues. There is a lengthy wait for children's services for disabled kids, but that is Tory Britain for you. They don't care. Our EHCP is at week 25 now, we still haven't had the assessment (should happen at week 6-12).

@YeOldeBuxomWench EOTAS is Education Otherwise Than At School.

You need to email the Director of Children’s Services, reminding them of the statutory EHCP timescales. If that doesn’t work, email again threatening judicial review. Then, if that fails, you need a pre-action letter.

The school must make their best endeavours to meet DS’s SEN. They can only formally exclude for disciplinary reasons. They must follow the statutory exclusion guidance - it is worth reading this. Some schools try to informally exclude e.g. by calling parents to collect without formally excluding or trying to insist of part-time timetable long term. Don’t allow that to happen, it is unlawful.

ADHD meds will calm him down and you'll see an improvement in behaviour but I think he'll be prescribed medication once he turns 6 years old.