Unsure of daughters future

[Moonlightstar]

Hi all, My dd is 3 next month and she is awaiting an autism diagnosis. She has many autistic traits. At the moment she can’t say any words apart from mama and dada and other types of babbling sounds. She climbs everything in the house it has me so stressed and worried I am constantly following her about all day because I’m worried for her safety. She won’t play with toys she will only throw them. Her communication is poor she doesn’t understand much apart from “no” and even at that she sometimes just ignores me telling her no. She won’t walk along side me I have to hold her hand or she will run off so that leads to her becoming frustrated and she will cry and drop to the floor when we are out. She never sleeps the night through and when she does get up it takes hours to get her back to sleep. She takes no internet in playing with other children, dd2 is 4 and it is heartbreaking to see her try and play with dd1 and to be ignored I’m so worried about what the future will hold for dd1 so what I’m asking is has anyone had a child similar to this and how did they get on in the future? Did they talk, make friends ect?

Bump

Hello Moonlightstar - my little one is 4 soon to be 5 and it hurts that’s he doesn’t play much with his older siblings. He does a bit more now than when he was 3 and he is making progress albeit slow. I have been through so many feelings with regard to this and ultimately I suppose I’m hoping for significant progress. I understand where you are right now. For you 💐

Hello Sunshinejoll - Thanks for the reply! I feel like I am also waiting for some sort of significant progress and holding onto hope that she will catch up with her development and be ok, but it’s so hard I feel like everything I’m doing is pointless she listens to nothing and won’t sit still for a minute to even try and teach her anything. It just seems as if she is only interested in climbing and running and gets frustrated when I try and sit her down to play with toys. How is your little ones communication does he understand much now from when he was 3?

Hi - my experience has been that my little one made progress with communication, following instructions and understanding from 3 onwards. He also never used to sit still. One thing he did do was imitate so I used this to my advantage to model speech and language with him and so he has made progress here. He will play alongside children at nursery now and his siblings but not directly with other children and I find this hard. I would love to see them play together but as my older two get older and into other things I feel this may not happen. I also felt like nothing I was doing was helping but very slowly it did. My son understands so much more now than a year ago. I tried to find things that he liked i.e. eating smarties and I played different games with them to teach him colours and counting, which he can do now. I only did this as he got no support from nursery or speech therapy etc. I know exactly how you feel right now but hang in there, you are not alone. I hope you get that little glimmer of progress x

Oh love
It's really hard isn't it? May I suggest the 'worried about autism' forum on BabyCentre ( US version of the site, just google it).
Really good,really really informative and a lot of traffic on there with parents in the same situation as you.
Something that crops up on there all the time is that a child who presents as mildly affected by asd now may be more severely affected when they are older and vice versa so assuming your dd does have asd (and I'm not saying she does) it doesn't mean she will be on the severe end of the spectrum when she's older if you think she is at this stage. It seems things are very fluid with asd and as with NT kids, kids with asd do also develop just at a different pace.
Post your question on that board and you will get some great responses very quickly.

She's very tiny! So much time to learn and develop. Autistic or not she will develop, but it may be at a different rate. Ds is a lot older, he's on the more severe end of the spectrum, but he's changed so much since he was your dd's age. Yes he's developed far slower but he's still made so much progress, he still is. All kids on the spectrum are different, we can't predict the future. There's lot you can do to help her and lots of different therapies available to try. It's understandable that your worried about the future bit it's not something you can control. No matter what happens she'll be fine as she has you to help her xx

Am I right in thinking that she'll start school in September 2023?

If so, it would be worth thinking now about which nursery/pre-school you would like her to attend from January 2022, when her funded hours start.

If she has a diagnosis then it's important to work with the nursery and health professionals to apply for an EHCP as soon as possible.

EHCP stands for Education and Health Care Plan. It basically formalises the support that your daughter needs in order to make progress. It is a legally binding document.

It also means that you are able to name the most suitable school for her to attend from Reception onwards.

Hi- thank you all for your responses they have been great help! It’s good to know that there is still a bit of hope as I was in a state that she would never develop and learn new things! When I look back to last year and where she is now she has came along a good bit but I think it was just last year everyone kept telling me she was fine once she starts talking she will come around and calm down. We are in Northern Ireland, she starts a pre-school next month but because of her challenges she is going to a different one than planned she will only be going 2 days a week for 1.5 hours each day. It is a learning and developing programme and they will have speech and language therapist working with the children in small groups of about 6. I was a bit disappointed in this tho I thought she would have got more help because she needed it as other children who are developing fine will be going to pre schools for 12 hours a week. I’m just hoping they will increase her hours along the way.

Hopefully the hours will increase at nursery. One thing I know from my own experience is that it really depends on the person teaching your child as well. We have faced so much discrimination and everything my son did or didn’t do became an issue. I hope your little one gets on really well and that things go in an upward direction for you. Best of luck x

Thank you so much! I’m really hope so too x

@Moonlightstar @Sunshinejoll hope you are both well. Just wondered if you had an update on your little ones and know what route they will be taking for
school

Hi @121314mum my dd is is a Sen nursery atm and will be continuing there in September for next year

Hi @121314mum - my little one is now 6 and year 1 at mainstream school. He is still noisy and sometimes won’t sit still and behind on his speech. He is however making slow progress with this and has learned to read and write and can just about tell me about his day at school. Some days at school are better than others and he has full time 1:1 support. Was there something you needed advice on?

@Sunshinejoll thanks for the update, did you consider a unit or ss. This is the stage we are at the moment. Currently getting ehcp atm. Wondered if you had similar decision to make

Hi @121314mum yes I was in this situation nearly two years ago. Yes my little one did have challenges in terms of behaviours, not interacting much and lack of speech but at that point I also knew he was learning albeit slower and the key for me was that he was able to imitate. I was told my son would never cope in a full mainstream class by his crappy nursery who never ever engaged with him. I did get the EHCP but I made sure the support was quantified ie they stated how many hours of 1:1 support he should get. For me I had to try the mainstream route first. He is now in year 1 and doing ok in a full class. He has made progress there but it is slow. I did consider a unit but we were limited in choices where we are.

@Sunshinejoll thank you for this , we live in Surrey and there does seem to be quite a few school within units within 20 mins from us so currently touring them all. Ive always wanted to try MS with full support but feel that if i get allocated a ss/ unit spot i should take it as i know spaces are hard to get. Feel like im
in a minefield atm and not really sure what the best course of action to take.

Yes I get it and it is the same here as well in terms of waiting lists for schools. Hopefully once you have had a look around you will get a good feel for a place. Ultimately it will be about whether your little one is happy there and can make progress in the areas where needed. That is what I asked the schools. I think there are always pros and cons but for us I thought to just see how it goes. Wishing you the best of luck for your little one and hope you get a great school place 💐