Feeling sad about asd dd development

[Hearteyes]

Dd is age 5 and diagnosed asd not long before she turned 4. We were aware of it long before that. I always thought she would eventually make good progress with her development as it all started out quite well. She started saying words very early on, loves completing puzzles - complicated ones, very good play skills and toilet trained relatively easily. But here we are age 5 and the language just hasn’t come on anywhere near as much as I’d hoped and still completely non/ conversational.
Goes into another world completely when we go out of the house, ignores everyone else and will lie on the floor when asked to do something she doesn’t want to do.
Feels like she has retreated into her own world and I don’t know how to reach her.
She seems to be quite behind all of the other SEN children I know, I feel at a bit of a loss at the moment. Will it always be like this?

Things can change.

Is DD receiving any support? SALT, OT? Does she have an EHCP?

Would a SN buggy help for the times you leave the house and DD lie on the floor? Some find it helps reduce overwhelm.

Thank you @BlueBrick She has an EHCP which is not worth the paper it’s written on. She’s not receiving any support through that although her school have given her a 121 TA. I think our LA is particularly poor. No speech or OT offered, so she’s not really getting any professional input. We have tried a few private speech therapists but didn’t find she would engage with them and it felt like we were wasting money.
She refuses to go in a pushchair as we have tried that :(

You should request an early review of DD’s EHCP. On their website, IPSEA has a model letter you can use. Unfortunately, the LA doesn't have to agree and if they refuse, there’s no right of appeal. If that happens, you would need to either wait for the AR or request a reassessment of needs. Then, if the LA won’t amend satisfactorily, when you next have the right of appeal, you should appeal. Once the EHCP has been improved, it can be enforced if it isn’t being adhered to.

If DD couldn't engage with the SALT previously, she needs provision amending, so she gets to a point where she can.

Would DD consider a wheelchair or a bike trailer?
Does she wear ear defenders/noise cancelling headphones, sunglasses and/or a large hoody? Some find these help.

Just wanted to say I'm with you, my son has a learning disability and autism, mobility issues, and I came on to write a similar post, that I'm in a slump wondering 'is this it?'and 'what does our future look like?' and feeling pretty sad about where he is at....so I totally feel for you and your post. Our kids are writing their own story and we have to support them at whatever stage they are at... its ok to feel sad about that sometimes.

@BlueBrick thanks again. We do have an AR coming up, I’ll definitely research more on what you’ve suggested. It makes sense, unfortunately our LA are extremely difficult to deal with.
I think ear defenders and sunglasses would definitely be worth a try, she never needed them before but I guess as she gets older her sensory needs are changing and it’s all becoming more challenging, thanks for the idea.
@Cantstopeatingapples82 sorry you’re also going through this. Thank you for understanding. You are right, it’s ok to feel sad sometimes.
Tonight my dd did something she’s not been able to do before by herself. It was amazing, I must remember to appreciate these moments.

Unfortunately, many LAs issue EHCPs that aren’t worth the paper they are written on, but, ultimately, it isn’t them that make the final decision. It is SENDIST when parents appeal.

I have a 9 year old with special needs, at an excellent school - we are very lucky.

Someone once said to me that children with ASD are more different from each other than neurotypical children. It’s true and as such you can’t compare yourself to anyone else or reach conclusions about what you’re SN child will be capable of. Our children learn differently and take sudden steps forward with their abilities. Keep going out and being a part of the world even when it’s tough - your child will surprise you many, many times yet. Sending a hug.

@Clobberella thank you so much for this, your words have meant a lot to me.

I know how you feel. DD was diagnosed at 3yo but generally for the last 2 years or so it feels sometimes like we haven’t made any progress (but I know I can be negative about it). I just feel like it’s more and more apparent that she’s on the severe side of things and i don’t know how you come to terms with it

@Ahna65 yes this is how I feel too. When your child is diagnosed at a young age you don’t know how they will progress and of course you hope for the best. It is difficult to come to terms with when they aren’t where you hoped or expected them to be.
I can be negative too, I expect it’s hard for us as parents to always notice the progress that’s being made.

Try keeping a journal of every new thing they do or even small improvement. It’s easy to overlook the little things but they can be really important

@Hearteyes
HI , hope your well. , know this thread is old. Just thought I'd ask how your dd is doing now ? I've got dd 5yo asd/adhd.