ASD referral - please help me cope

[Allthenumbers]

Looking for help, support, a hand hold from parents who know what I’m going through.

DD is 3. I’ve had concerns about her for about 8 months due to not responding to her name, slow to put 2 words together, avoiding eye contact, echolocia, and her lack of interest in her peers. She doesn’t respond to questions at all really. Unless factual eg what colour is it. She never really asks questions other than “where”, “where’s mummy gone”

She talks but often not in context. She’s very happy, cuddly and loving. She entertains herself endlessly (I know, not necessarily a good thing). She can tell if I’m sad sometimes. She can count to well over one hundred. She knows several books by heart and will recite them.

I went to a SALT drop in over the summer and told the therapist my concerns. She was happy to refer dd for an assessment.

She started a preschool in September and I told them my concerns. Their inclusion person from the LA saw her today and was pleased I’d already got the referral as that was what she’d recommend. She obviously can’t give a diagnosis but said dd has traits of ASD.

Poor DH has been in denial and the news that another professional agreed with me has knocked him for six today.

I feel so low and exhausted. I had dd2 a year ago. Having a one year old and three year old is tough enough but dd2 is a bad sleeper. And now this. I’m a SAHM for now. I can barely cope.

It’s hard to have friends with other mums with kids dds age as the older she gets the more noticeable her different behaviour is. I have social anxiety anyway. And it’s hard to take both of them out anyway since dd1 won’t listen and it’s impossible to have a meaningful conversation with her.

I don’t know whether to tell people she’s been referred for an assessment or not. Did you?

I need help but I don’t know who can help me. I feel like I can’t cope with another day with the kids

Thanks @Legoroses It’s actually dd2 (I’m confident she is NT) who is the bad sleeper! The irony. Dd1 is a good sleeper!!

She does go to sleep in the cot @openupmyeagereyes. Thanks for your post. But I think she still wakes up for feeds and I need to stop feeding her so she hopefully stops waking. I really feel my depressive feelings are mainly due to sleep deprivation.

@Legoroses I wonder if that‘s what it is about the nursery. It is irritating me a lot. The 2 friends who keep going on about it are couching it in that I need more time to myself. But I’m not sure if that’s what I need. Actually what I need is for friends to listen without telling me what to do. I feel a gaping hole between me and friends with NT kids right at the minute.

OP have you told them plainly that nursery isn’t for you, and that’s your final decision? If they’re good friends I’d be blunt with them that you don’t want to talk about it anymore.

It does feel so isolating. Do you know anyone in real life that has been through something similar? For me, chatting to people I already knew who had dc that had a similar toddler-hood has been a total game changer. Just having another mum laugh and say “Yeah, X used to do that too!” made me feel like I wasn’t alone, and that a diagnosis isn’t a bad thing, it’s just different.

No one can offer us a crystal ball, but from what you’ve said your dd sounds like she’ll really thrive with the right support. And by flagging your concerns now, you’re doing exactly what you need to do to get her any help she needs.

Thanks. No, I haven’t really told them plainly. I mean dd1 is in preschool. But she only started at 2.8. The pressure before that - oh god. And actually I see my choice was right for her. I guess I say things like I’m worried about the summer (dd1 preschool is term time only) and then the response is to solve my problem by telling me to get more childcare. I need to be more careful who I confide in perhaps.

I would love to know people in real life in the same situation but I don’t.

Thanks @yellowrainbow for the post about how you’re coping with 2. I actually found it easier at first looking back. Dd1 was 23 months when dd2 was born. I didn’t actually have concerns about ASD then! Dd2 lived in a sling and I went about pretty much as before. It’s got harder as the year’s gone on - dd1 stopped napping, then dd2 started moving, dd1 has got more aggressive, and crucially my concerns about dd1 got bigger and bigger. I’ve lost my confidence at taking them both out as DD2 is no longer happy in sling or buggy and wants to run around but dd1 still needs so much input. It’s good to know that your DS is going through a happy stage. That’s great. I must sort out a visual timetable! Hopefully my dd1 will be able to walk by the buggy etc reliable soon. It’s my disappearing confidence that is the problem and also just really struggling to manage dd1’s behaviour sometimes.

She sounds lovely. It may be just that you havent found the right toddler group for her yet and the right group of mums. Some are more accepting and inclusive than others

Hi!

Huge hugs. I have private messaged you.

Thanks. Toddler groups are ok actually as dd1 quite independent at them but as she’s in preschool in the morning (when all the groups are) she no longer goes. Dd2 has been having a morning nap so perhaps that’s why I feel so isolated as I’ve been at home while she naps. She’s starting to have one nap a day now so that will help as I can take her out while dd1 is at preschool.

In terms of taking them out I more meant things like the shops and the park. Dd1 is not that independent at the park and dd2 needs my constant attention as she’s only just one and only just walking. I guess it’ll get easier as they both get older.

@Blossom4538 thank you xxx I’ll pm you when I get time xx

Hi,
My ds is just 4 and the school applied for an ASC assessment for him. I’m in a similar position to you, have another dd aged almost 2.
I find seeing my son as an individual really helps. All children are different, in fact we are all very different. Try not to focus on the label, but look forward to the assessment stages so at the end of it, you’ll have a really detailed idea as to how things are for your child. I think this will make things much easier. The spectrum is incredibly diverse ( we are probably all in it one way or another)
There will be days you feel like tearing your hair out, but take it from me, I have 5 children and my other 4 are neurotypical and they too have pushed me to dis pair, in different ways.
I’ve just ordered a weighted blanket for my ds. A friend of mine recommended it. Ideal for poor sleepers. I’ve also ordered, or you can make a kids visual planner, one for each child, including, dressing, breakfast, teeth, tv, school, snack etc. Keep referring to it. You can build in activity time. ( if you plan it, it can keep them busy whilst you do jobs, then when one sleeps, you can have less going on.
My ds loves praise. I just keep it short, simple ‘that was very very kind. I feel really happy in my tummy’
Children with ASD definitely feel emotions, it’s they can feel confused understanding them fully. I relate feelings physically, ie happy tummy, sad in tummy as it’s something my son can relate well too.
Don’t be hard on yourself. Sometimes I think we are blessed with these children because we can cope with it. You’re overwhelmed understandably. Remind yourself that there’s not a parent in this planet who doesn’t feel that way from time to time.
It may help if you keep a diary not only for your benefit but perhaps when you look back, things which have worked well will stand out. Rubbish days will have passed and you’ll see you coped brilliantly. You’ve got this.