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What does the future look like?

6 replies

SinkGirl · 01/09/2019 21:26

I’ve been feeling okay mentally lately, but getting word of the EHCP assessment has really affected me more than I expected.

I know that doctors can’t tell me what to expect in terms of my twins development over time because there’s no way to know, but having no idea at all is breaking me.

I worry that because they were both diagnosed with autism so early (2y3m and 2y6m) that means that they must be very severe in the scheme of things and therefore their prognosis must be bad. I don’t know what to think any more.

I was just looking back at the Derbyshire scales we used with portage for DT2 (portage is now finished for him sadly) and I do see he’s made progress, it just feels so sparse and it frightens me to death.

I just want them to talk to me. Even a few words. I’m worried it’s never going to happen and I don’t know how to cope with that. They’ll each do a little bit of PECS (for a snack or a toy) but moving that on to more feels impossible because they just do not understand. DT1 has started to sign more but he doesn’t know it means more, he thinks it just means that he wants something. He doesn’t really copy things so signing has never worked with him - I’m not sure why this one has stuck.

I’m really scared to be honest. I just want to wake up one day and for all this to have been a terrible dream. Even if I could see the future and things were the worst possible, at least I would know.

How do you just get on with things with so much uncertainty?

OP posts:
Sausagepickle123 · 01/09/2019 22:08

Hugs.l FlowersCake.its a tough time sorting out EHCPs. However, the fact youve got to this stage already is brilliant - and will hopefully lead to more support for your children. I’m a bit of a lurker on here but your post struck a nerve because I remember reading advice on here that whilst you should always be ambitions for your kids, just to focus on the now. Try not to worry about the future, it’s too early. It’s tough realising your kids need a lot of support but eventually you’ll make your peace with it.
For what it’s worth, my son is now nearly 8. He’s smashed all expectations so far and we love him to bits. Life is challenging but we make the best of it.
Best of luck, your children sound awesome.

Noway85 · 01/09/2019 22:22

Hey op,

It's totally normal to be feeling the way you do! You sound very much like me when i was starting out on this journey. I have one ds so i can't imagine how difficult it is with two.

No one can tell you how your children will be doing in 5 or 10 years time. Some doctors/professionals may try and tell you but they have no way of knowing.

My son was diagnosed at 2 years and 4 months. He was non verbal, didn't understand anything i said, no words at all and didn't pick up pecs or makaton. I was told by speech and language all the things he wouldn't be able to do. Told not to bother toilet training him because he wasn't ready. It totally broke me at the time. I like you are now found not knowing what the future held for him was the hardest.

My son is now nearly 10. He's fully toilet trained day and night. Im going to be honest with you, it took a long time but he got there in his own time. We kept on trying and trying and eventually it stuck. My son didn't respond to his name till he was 5. He picked up pecs around 6. We then switched him to an ipad with picture based speech software and his understanding of language exploded over the next few years. He now understands most of what is said to him. By 8 he was able to use his ipad to create sentences to ask for items, interact with others. He can tell me hes loves me, tell me to go away and that he wants a hug. It might not be verbal but it is him talking to me, he's just borrowing someone else's voice.

6 weeks ago shortly before his 10th birthday he verbally said my name. Quickly followed by daddy, his own name, other family members names, hello, goodbye and a few more.

My point is we where told he would never achieve everything he has been able to achieve. It's been difficult at times, we've certainly not had professionals on our side but he has proven everyone wrong and i couldn't be prouder of him for his determination. Of course everything isn't perfect all the time, we have our challenges and always will have but honestly life is good with it's usual bumps here and there. I wish life was easier for him but he justs gets on with it. Overtime i have definitely got better with dealing with things. You find what works and what doesn't. Never be a afraid to ask for help! This is the one thing i wish i did sooner. X

SinkGirl · 02/09/2019 06:30

Thank you both. Your kids sound wonderful - it must be so amazing for them to actually say a word. I can’t even picture that happening!

Thank you for sharing with me. It’s good to know that things can improve. You’re both doing an amazing job Flowers

OP posts:
KissyThief · 04/09/2019 10:10

Your doing a wonderful job and your amazingly attentive to your twins! It’s perfectly natural to be worried about the future for them and to be sad that their lives are different. It’s just a sign that you love them Flowers. It’s a hard one that I struggle with too. Some days for self preservation I need to accept my dc1 is who he is and other days I’m really motivated to get him to do his goals.

Ggift · 10/09/2019 14:49

Noway85, your post made my day, really inspirational for worried moms like me. Thank you.

WingingIt74 · 15/09/2019 22:26

Sending you big hugs OP. Thinking about the future is scary and drive me nuts sometimes....

Our experience tends to be two steps forward, one step back. Ds is 5.5 and there's still things he struggles with - he can't hold a pen, his language is delayed compared to other kids, his concentration is fleeting and he struggles with sequencing. On the other hand, he's mastered things I'd never expected he would - he's fully toilet-trained (even overnight), he's starting to grasp phonics, he's learnt to jump, can climb on climbing frames, can undress himself. This week he's learnt to spit his toothpaste into the sink rather than just swallowing it. A small thing, but progress...

It takes him longer to grasp skills, but every time I mentally put limits on what I think he can do, eventually he proves me wrong. So that knot anxiety is loosening a little, but it doesn't go away completely - that's motherhood for you...

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