Toddler with autism-thoughts/experiences please

[Goingcrazy888]

I think my 2 y/o DD has mild autism. She has been put on a wait list to see a pead by our NHS SALT. These are her symptoms:

-Very slow speech development, after weekly SALT she has now progressed to being 6 months behind from being 12 months behind
-Walking on tip toes sometimes
-Tantrums on another scale to any other toddler I have seen
-hates singing circle time activities with other toddlers. Completely freaks out at these.
-Extremely fussy about food although this is slowly getting better. Hasn't knowingly eaten a vegetable for at least a year. The only fruit she will eat are berries and grapes. Recently went through a stage where she wouldn't eat any meals, just toast.

When we saw her NHS therapist this week we discussed autism and dyspraxia (not sure if she fits with any dyspraxia symptoms). She is supposed to see the NHS therapist once every 3 months but they forgot about her and there was a 5 month gap between sessions once I finally managed to get hold of them (but that's a whole other thread). Had to practically demand the pead referral. She sees her private SALT once a week.

We have a family member with aspergers. I think if DD does have autism it is probably mild as she can be very caring, likes to do imaginative plays, points at things etc. Sometimes she has good days and I think I'm just imagining it all and she's just been a normal toddler... I don't know.

I'm so exhausted, I have a 5 month old who doesn't sleep as well and everything just seems so hard. I just want my girl to be happy and I hate to say it but "normal" I know that sounds awful but I just desperately want her to be ok. I worry about this constantly.

If she does have autism what is life going to be like for her? Will she be independent/have a job/go to mainstream school? I know no one here can tell me. I suppose I'm just venting.

Hi going and welcome to the board, you know we cant answer your questions about her future but we can support you while you are on the journey to diagnosis [if she needs one].

I have an 11 yr old Dd with Asd she is at mainstream school and can keep up academically but school can be a real challenge for her.

The best advise I can give you is to keep a diary of her issues/difficulties, what causes them [if you know] and how you deal with them.
And try to work out what causes the biggest meltdowns and see if you can avoid the triggers. One of Dd3's triggers was me switching the TV off before a program had finished. It took me far too long to realise why she kept melting down at school run time and that was it!! it wasnt that she didnt want to fetch her sister it was that I had turned the TV off and she didnt know how it ended, even if she had seen it 20 times before!

Good luck

Thank you for reading ineedmorepatience! Keeping a diary is a brilliant idea, going to start that tomorrow. When you say school can be a challenge, in what way? I'm just starting to wonder about practicalities. Despite having a BIL with aspergers I don't know all that much about day to day realities TBH

One of the biggest things I'm struggling with at present is juggling the baby and DD when she has a meltdown at toddler groups/activities. TBh I find it hard enough as it it just getting there and getting her interested/involved. When she has a meltdown I find it so stressful and just want to meltdown myself.

Dd3 finds school, noisy, smelly, busy and confusing at times.

I would recommend reading some stuff about sensory processing, it plays a large part in how children with Asd understand the world and often it seems too loud, too bright and too frantic for them to deal with. That could be your problem with singing time. Maybe you could leave just before singing or go into another room for a while so she is less stressed. Sitting in a group of people all making a racket could be overwhelming for her.

You could even cut down on the number of sessions you do and just do something less stressful like feeding the ducks or collecting sticks/leaves in the park.

We used to go to the park during the day when all the big kids were at school and it would be quiet.

Dont be afraid to not do the "normal" toddler stuff with her if she cant cope, it will make both of you miserable. Think outside the box and do what works for you and her not what is "expected". Dont forget, you are the expert on her if you know something is stressing her out, dont do it. Walk away for a bit and revisit later.

Give yourself permission to parent her in the way that works for her and you and good luck

Hi going, I was in a similar place to you about 18 months ago - with a young baby and a very highly strung 2 year old DS. Toddler groups were a similar struggle, he just would head for the automatic doors of the library ad spend the whole time opening and shutting them! A meltdown would be triggered by being moved away from them or traffic lights, which were his other great passion. Now he has an ASD diagnosis but he has also in the meantime really "calmed down", he manages his emotions a lot better. His speech is finally coming on too, as well as ASD he has verbal dysprqxia to contend with. He also now really enjoys his mainstream nursery (when he was 2 he seemed unhappy there and would be v distressed at drop off) and is off to mainstream primary school this sept (speech and language unit)

The whole thing of trying to understand what your child's needs may be and trying to get an idea of the outlook for the future is really really hard, I can certainly relate to the strain you are under. Getting the ASD diagnosis is v tough but actually opens lots of new doors for support of various types. Plenty of people with ASD do end up being independent but I try not to dwell to much on the long term as you can go round in circles and really what's the point in speculating! I'm trying to enjoy the lovely time at the moment, aware that school will bring fresh challenges.

I hope you can see the paed soon so you can get some answers, there's a good possibility you will be reassured your DS does not have ASD or something like that. In the meantime I would echo the advice above and not worry about trying to conform to what most toddlers do. We used to walk to the shops and cross the road at the traffic lights many many times! Lots of people report great success with visual strategies, e.g. Now when we go away on holiday or to see family we make a little storybook to explain to DS what is happening. Equipping yourself with knowledge of what ASD and dyspraxia are and how to help will be invaluable if she does have either of them and helpful even if she doesn't.

In the meantime hang in there, with DS nearly 4 and DD nearly 2 things are so much easier than they were. And actually having a sibling so close in age has been great for teaching DS lots of things he doesn't pick up naturally like other kids do. Keep coming on this board, there's an incredible wealth of information and support.

Sorry for the rambling message...

Ineed-thank you, it is really helpful to see how autism affects real kids. I've been looking at some sensory issues stuff online after reading your post this morning and I think this is why DD reacts the way she does. Helps me to understand her a bit more. Makes me feel very sad for her though if this is what she's going through.

Ahhh-no thank you very much for your rambling post, I need all the info I can get! That is so, so reassuring to read that your DS gets on well at nursery after being similar to my DD at the same age. Nursery is one of my current concerns so that was so reassuring to read. I think a lot of my worry stems from the fact that BIL wasn't dx until he was an adult and is not indepenDent. This makes me anxious to understand it all better and get her as much help as possible as soon as possible if she is autistic.

I think you're both right that we maybe need to step back a bit with groups and have a think about how to parent her differently to make us all happier. At the min she goes to the following once a week; toddlers, rhyme time, play date, speech therapy, gymnastics and soft play. I've just forked out for her to go to gymnastics for a term, we've only had one class so far and it turns out they have a singing time in the middle of it which she hated, really should have thought to ask if they had that before booking her on it. I think I had it in my head that if I socialised her enough it might make her "better". I know that is crazy really but had to feel like I was doing something IYSWIM. Will have a good rethink about a those

Thank you :)

Glad my post was of some help! Re gymnastics, my DS does it too and loves it and the people that run it are great with him and really keen to help enable him to join in. Maybe your DD could leave the room for a break, cuddle with mum and a drink when the singing happens? From my perspective I think exposing DS to as many different experiences as possible will help him develop in areas he struggles (eg concentration, social interaction) and help prepare him for school - but only if he enjoys it, in my view it's counterproductive if it's too much for him. saying that we did persevere with nursery for a long long time when he wasn't happy. Funnily enough he started enjoying it when he went up to the room for the oldest kids and got a new key worker who genuinely cares about him and really tried to know and understand him.

Does your DD have an IEP at Nursery? It's well worth talking with the SENCO and her key worker about how they can support her. Since DS got his diagnoses the nursery gets extra funding from the local authority to spend an hour one on one with him each day. They spend some of it on speech work and some of it supporting him in interacting with his peers, eg teaching him turn taking etc. I thinks it's easier to get this sort of extra support with a diagnosis but maybe worth seeing if the nursery can kick off the process sooner rather than later (takes a little while!)

Sorry I probably wasn't clear, DD isn't at nursery yet. She is home with me full time as I'm on maternity leave at the mo. I have been worrying though about when she does go to nursery, really don't think she will take it very well. What are IEP and SENCO? Can you get these prior to a diagnosis?

Thank you :)

Oh I see!

SENCO = special educational needs co ordinator, all schools, preschools and nurseries should have a member of staff allocated to this role to help sort out how to provide children that need it with extra support.

IEP = individual education plan (I think)

You can certainly have an IEP before diagnosis, DS had one from 2 and a bit when he was first referred to speech and language. No diagnosis or indeed involvement of any services are needed for an IEP to be put in place, it's just a doc that describes targets for the child and what activities etc the nursery is going to do to help them achieve the target. Googling early years action or early years action plus will tell you a bit about how it all works!