ND - under 5s support chat

[stripeswhite]

I have a toddler who is showing many signs of ASD. The gap between ‘normal’ kids and ‘normal life’ is growing and it is really isolating and sad.
Finding that my usual mums groups/WhatsApp groups/sources etc are worlds apart from where things are for us.

Wondered if anyone was in the same boat and knew where to reach/ connect to others, or wanted to do that here?

I always knew something was off but everyone kept telling me 'Dont label' and 'there is still lots of time for her to catch up'. I raised DDs speech delay with the HV h=who duly put us on a wait list.
I met up with a mum friend and her daughter who was the same age as DD and just watching her sit and eat her lunch with us, chatter away about everything she could see made me realise just how wide the gulf now felt between DD and her peers. We began private speech therapy and she was the first person to suggest ASD as the cause. I struggled with it at first, but now in hindsight she saw things I didnt which now as DD is older, I can (such as a stim that has developed).
She referred us onto the ASD team and we then had the first assessment in November. I am not bothered about an actual diagnosis but it was really handy as they were able to mark her milestones which became really helpful for us to access further support e.g ehcp, school delay etc.

What sort of stage are you at? x

I feel the same, I can find it quite triggering to be around parents with neurotyplical children so that doesn't help. My 4 year old has ASD and global development delay. What has helped a bit is we found 2 local groups for SEND kids only. To environment is much more suitable for him to play in and other parents just understand there and no-one feels the need to explain themselves

This. I took DD to two birthday parties and cried after. We go to SEN gymnastics and the sense of community is wonderful. No one judges. We are all in it together

Lovely to hear from you - how old is your DD? It’s great you have been seen for a first stage appointment. When is the next one? How are things going day to day? Sending you a virtual hug.

What you said about the lunchtime resonates a lot. My DS (1.5) has significant issues with food (amongst many other things) so I really feel that when I see friends and their toddlers for lunch - mine can’t tolerate the environment let alone eat.

We are getting ‘wait and see’ or awaiting referrals etc but there seems to be next to nothing in the meantime x

DD is 4 next month. She goes through stages of how much things seem to bother or trigger her. She struggles more in winter.

I found keeping a diary quite helpful to look for triggers in behaviour. Sometimes one kid would shout and she would meltdown, and other days she would run full pelt into a heaving playground. We started to think of her having a 'tolerance battery' and things like how well she slept, the weather, how busy a bus was would all drain the battery and make her more likely to not cope with sensory triggers.

What are his issues with food? Handy tip - lots of speech therapists also specialise in food issues! x

Definitely look at SN groups locally. Some special schools run SN playgroups. Depending on DC’s needs, you could also look for SN sports or music groups. SN soft play sessions could be a way of try to interact with others with DC with SN, too.

Have you had a referral to Portage?

About the food issues, have you looked at ARFID?

It sounds like you’re really trying to understand her and her triggers. Has she been offered any formal support pre/during diagnosis? How are you coping?

I’m finding the demands / meltdowns really hard. Food in general is such a challenge for him, he only eats a handful of things. Any recommendations for finding a speech therapist?

I’ve heard of Arfid @BrumToTheRescue and it does sound like my DS has it. I joined a FB group for it and it is full of stories of tube feeding and eating only a few foods for the rest of their life - and that there is no real cure / treatment. It is really heartbreaking to think this is the life he will lead :(

I would push for a referral to paeds and a dietician for support with DS’s eating. If you can get a referral, there are a couple of specialist ARFID clinics. Does he take vitamins?

Firstly - love the username - just clocked it!

Yes we are really struggling with meltdowns atm - they seem to have come out of nowhere and include biting, pinching and hitting. I burst into tears in public last week because she managed to pinch my face and neck so incredibly hard, and then i felt upset that I was upsetting her.

Good places to start - find your local fb groups for SEN kids. Is DS in nursery yet? We found lots of support there.

Have you spoke to the HV? They can make referrals.

Yup he’s in vitamins. The referral has been rejected a few times because his weight is fine - he eats a fair amount of his very few safe foods, One of which is digestive biscuits. I’ve said that you can be a ok weight living off eg mars bars but nutritionally deficient and miserable but no luck :( finding it really hard at the moment, DS has literally only eaten biscuits and one yogurt for 2 days and huge meltdowns to even have anything else put in front of him :(

The meltdowns are so hard, sending you a huge hug. I would have (and have done!) cried too. What do you tend to do to manage? I’ve been dealing with it really badly, nearly yelling and wanting to hit back and it’s really upsetting. It makes me absolutely dread trying to do anything with him.

Yes he’s in nursery and they are trying with the food issues mainly but no luck - just having the same safe snacks. I’ll have a look at some SEN groups locally whilst waiting for the HV referrals.

How does your DD find nursery?

You could request a referral out of area.

If the nursery needs more advice on how to support DS, have they asked for advice from the Area SENCO?

I’m not sure if they have actually but I will ask - thank you!

Unrelated but another issue is my DS refuses to walk outside the house. If he’s not in the pram he will literally meltdown on the floor. Just wants to be carried all the time but gets fed up in the pram. Any advice?

Would DS be able to (and want to!) sit on a trike with a parent handle? He might prefer that to the pram.

Could you carry DS in a carrier?

We have a trike but he refuses it. I find him too heavy in the carrier and really he can walk - I see so many toddlers in the park/etc just toddling about and I really can’t understand how to help him.

Feeling really down about him and the life ahead of challenges. Especially the food thing it is such a battle so many times a day, that I don’t have energy in between to deal with all his issues. Wondering how to get through this all :(

Feeling very lonely and low today and wondered if anyone related/wanted to chat. I hate ASD.

My dd started showing signs of asd at 19months and now shes 2 yrs 9 months and much better in terms of some things at least. I did early intervention with her, starting with nursery rhymes and gestures, and then I joined a More than words hanen course , so i can do speech therapy at home. These things have all empowered me in some way. Its v hard to see the gulf between ND and NT children. I too cried after some activities but now am turning the corner.

Thank you. Could you share more about this more than woods course please? I’m so lost on how to help him myself with early intervention/therapies. Every day feels like a fight I’m losing.

So the More than Words Hanen course is specifically for ASD kids, its how to get their attention , their eye contact and eventually words out of them, strategies to deal with meltdowns, sensory regulation. At first i found it overwhelming, but now, I do about 30 minutes with dd every evening and its incorporated into our daily lives and it is yielding results. Ie shes now started looking at books, when she was never interested, she is also highly excited when i sing nursery rhymes, who do bubbles, and her eye contact has increased several fold. Its an online course, that runs every other weekend on a Saturday for 2.5 hours and there are other parent there too. I started in January and its concluding now, I will also do a follow on course.