Parents of neurodiverse young children support thread.

[user0512]

Posting on AIBU for traffic as the neurodivergent board is quiet.

Hi all,
I’m not sure if something like this already exists but after feeling like rubbish most of today I thought I’d start a support thread for the parents of children with neurodiversity.

My DD who is 2.5 isn’t officially diagnosed yet but her dad has AuDHD and so does my sister as well as other members in both of our families.
DD has always been a high needs child, initially I put it down to her dairy intolerance but after that got sorted when she was around 6 months old it quickly became apparent to me that away from her allergy she was still a high needs child. She would often head bang as a baby as a soothing mechanism before falling asleep and would struggle to be soothed. She also pointed quite late which is a big red flag.
She’s extremely chatty and strong willed (which I’m sure will do her good in the future) but it is CONSTANT. She shows signs of echolailia whereby she constantly repeats her words. She has a deep attachment to toothpaste and her toothbrush and all day she’ll pester me for toothpaste and toothbrush but I’ll have to keep reminding her that it’s for morning and before bed. She used to play independently as well as with me about a year ago but now she doesn’t want to play independent and required me to join in, in almost everything.
She uses hair to self soothe (whether it’s mine or hers) and is extremely cling. She has melt downs when we move from one part of the house to the next and during transitions. She really reallt struggles with transitions. Nursery have noticed this too and will be doing an emotional regulation assessment on her.
She puts everything in her mouth and is ver hyperactive, doesn’t have any danger awareness at all if I’m honest (although I wouldn’t expect her to be super safe at this age) she is constantly climbing things and even tried to put cords from my laptop charger around her neck (have to hide everything now).

She is ver clingy towards me and she wasn’t like this around a year ago, she’d be a healthy level of clingy but recently it’s been a lot.

I understand some of the above may be normal toddler behaviour and the health visitor does say it’s too early for her to receive a diagnosis which I understand but i feel like her meltdowns during transitions, her self soothing behaviours, the clingyness etc is more than what you’d see in a typical toddler.

It’s very tiring and lonely and it feels like I’m a way off of getting any support for her as she’s still so young but I just feel awful as most of the time I’m counting the hours down until bedtime.

Hi OP.
My DS is autistic, I suspect ADHD too. He was referred for an autism assessment shortly after he was 2 so there may be a way to push back on HV saying your DC is too young, especially with nursery noticing things.
So much of what you said is like my DC. Unfortunately mine just got more difficult, he's 4 now and 2.5 was one of the easiest stages with him. He was very gentle and unfazed by other children. Then he started taking an interest in other children but this came with pushing and scratching them because he doesn't know how to interact. People are more understanding of this with babies and toddlers, a 4/5 year old, not so much.
It is a difficult and lonely road. I have older DC with no additional needs. I had no idea when I was raising them what it was like for those parents raising SEN children. You really never know until you've been there.

Hi OP. If you want to get on the wait list to get assessed, go to GP and do the right to choose option. That's what I had to do for my now nearly 4 year old. He's still pretty much non verbal and he's now had to stop attending the childminders he went to because his behaviours were getting too much for her to handle. It's so bloody stressful when they are so clingy to you. I feel like I only ever get peace when he's finally asleep 😭 I know that sounds awful and I really do love him so much but god it's hard fucking work 😅 I'd definitely do the right to choose option because the wait lists are so long for assessment. 3-4 years where I am. Oh and they won't even attempt to diagnose ADHD until they're 6. Solidarity OP 💐

@JLou08 your little boy sounds just like mine with regards to other kids. He used to parallel play great when he was 2 but then when he turned 3 he just changed. He gets completely stressed out when other kids try playing with him because he's very hyper focused and likes things set out his certain way. He just seems to hate being around other kids now 😕

Hi, I have an autistic husband, a high functioning 12 year old autistic with congenital spinal scoliosis and an 8 year old going through the diagnosis process for Adhd

I'll join in! I have a clearly ADHD 6 year old who's paperwork has just gone in so he's in the pipeline for assessment

He's mad, brilliant, but absolutely mad, he does everything at 100mph and just never stops. He's been busy almost all week and isn't remotely tired, he'll spend all weekend (3hrs Saturday, 6hrs sunday) bmx racing in the sun and will still be wired and raring to go

He's fantastic fun but exhausting, he's incredibly physical so runs/jumps/climbs everywhere and wants to be doing flips over you or standing on your shoulders as soon as you try and sit down. He does judo and the difference between him and most of the other kids is so clear, they're all sitting/standing still and listening while he's spinning in circles or dancing or just anything except being still

I ADORE him, I think he's absolutely brilliant, he's so switched on, determined, fearless and just up for anything it's great, but he is starting to struggle in school and with impulse control which is getting him into trouble so I'm not sure whether to consider medication

@Anonononysounds like my nephew, he’s 7 and is full of never ending energy. So far he’s masked really well at school but recently he’s been getting into trouble due to being ‘offensive’ with his words (he called one of his peers dad fat) and when the teacher spoke to him about this he said ‘I didn’t say anything wrong, I’m just saying what is true and what I see’.

My sister spoke to him about this after school and she said ‘imagine if someone called your mum fat, how would you feel?’ And to which he said ‘but you are and it’s true, it’s not a lie, I don’t lie and it’s not good to lie’ (she’s 1 month postpartum bless her!) he sees things quite black and white and literally. He’s currently on the waiting list to be tested for ADHD and autism as we believe he has both. Despite all the above, he’s really loving, very loyal and cares deeply. He’s just extremely hyper, needs constant attention and reassurance and sees things as very matter of fact

@ToffeePenniethats a lot to juggle. I hope you have support network available to you, it’s a lot to deal with

@Devilsmommyhow would I go about mentioning it to the GP? As she’s only 2.5 years old I think the GP will say what the HV said and will say she’s too young and it’s typical toddler behaviour. I think people don’t realise we’re not expecting toddlers to be perfect - they’re kids after all. But often with ND children you see extremes of the ‘toddler meltdowns’ the sensory issues they face, you see the big feelings are on a whole new level and I jut feels so demoralising to go to a professional for help and for them to act like you’re expecting a toddler to behave like an adult, I’m aware that toddlers are notorious for their terrible twos but I feel like a mother usually can sense when something isn’t within the norm.

The clinginess I find really hard. It’s nice to be wanted but with her being so vocal and so demanding it can get so tiring very quickly. Solidarity to you too!

You just tell the GP that you want a referral to pediatrics because of your daughter's different issues with regard to getting an autism assessment. It's your right to choose so the GP has to make the referral

@JLou08thank you. Please can I ask what signs your son was showing at 2 to people an assessment?

I do worry, because a lot of threads I’ve seen do usually suggest it gets worse as they carry those ‘big feelings’ with them throughout and manifest differently as they get older and stronger. It feels like a long scary road if I’m honest. I can understand it must be so difficult for you, I think if being a mum has taught me anything it’s to try not to judge! Like you said, people ma just judge your 4/5 year old son and not understand his condition/needs which is awful.

I hate it when I go to the shops and I get stares like I’ve raised some sort of spoilt brat, she just can’t regulate and no matter what I do it doesn’t help. I dread going out with her, she’s only 2.5 and it worries me that this is how I feel so early on, still got a lot more to come! I love her to bits, I really do, but it is a lot

He had an assessment with a speech and language therapist, assessment with specialist nurses playing with his, observations from the consultant and questionnaires completed by myself and nursery were used to diagnose autism. Some of the things noted there were sensory sensitivities, echolalia, on his own agenda and not letting others join his play, limited eye contact.
It was the health visitor ASQ that made him screen in for an assessment, which I'd asked to be done as soon as he turned 2 as I knew he was autistic. A few of the things which were 'red flags' were not responding to his name, not pointing or following points, he'd had a speech regression and gone from saying single words to just vocal stims. He was repetitive with his play,was difficult to sooth, cried whenever I left a room and had no interest in anyone else.

@JLou08I see! My DD has always been behind with milestones such as pointing, waving etc and these did raise concerns and they did an assessment on her whereby they watched her play to see if she can engage in pretend play, she didn’t do too well in that and they said they’d be making referrals, however, a few months later when the HV called to check in DD had ‘caught up’ and was doing those things and health visitor said all was fine. I think HV isn’t that clued up about ND tbh because it’s not that all neurodivergent can’t make eye contact/respond to their name etc. Most do, they just do it later than NT children and that in itself is often a sign. But because she caught up, HV wasn’t worried but the above behaviours still persist (the ones I mentioned in the OP)

It's missed a lot in girls, they do seem to mirror imaginative play and communication quicker than ND boys. I'd be prepared for the chance that she may not be diagnosed until she hits her teen years when social communication becomes more complex so more difficult for her to get by with masking/mirroring. Some schools can be really understanding even without diagnosis and you can still look up and use strategies to parent an ND child.
There isn't really any professional support after diagnosis anyway so you won't be missing much in that sense.

@JLou08defo, it seems as though she already masks at nursery as she seems to let it all out when she’s at home and is pretty well behaved at nursery but does struggle with transitions.

Although I know there’s no ‘cure’ I’d rather know do adjustments can be made if she requires them, my sister got diagnosed very late and it impacted her a lot, same with DD’s dad. He’s still awaiting a diagnosis but feels as though he was failed throughout his childhood as no one picked it up

A diagnosis isn't needed for adjustments or an EHCP. My DS got an EHCP before his diagnosis, so did my friends DD who is still waiting for diagnosis aged 10. It's needs led rather than led by diagnosis. I'm not saying don't push for an assessment, but just for reassurance and for your own awareness if nursery or school try to say a diagnosis is needed, and also be aware they can refuse even with a diagnosis if they don't think she needs it.