Struggling to deal with emotions re child with SEN

[Dahliaxnoir]

Hi all,

This is potentially outing so name change

I'm sorry this is long but I'm just so frustrated and sad.

I'm posting in aibu as I don't know if my feelings are normal.

DS is three at the end of next month. He had a rare genetic condition (16p11.2 microdeletion) and we strongly suspect he is autistic, the wait is 20 months though so we won't know for sure for a little while ( I am tempted to pay for a private assessment but I don't know if the NHS recognises them and I'm scared of paying 2k plus and be wrong and he isn't autistic but anyway)

He can't walk at the moment. There's nothing physically wrong with him and there's no reason he physically be walking but the physiotherapist believes it may be a sensory issue for him and he'll just walk in his own time. They don't have a time scale but he hasn't progressed any further in a year so I don't know what's going to happen with him and it's so frustrating because he can walk, he just doesn't seem to want to and he's so heavy. He's in a size 4-5 so carrying him everywhere is hard but we can't explain that to him or even encourage him to walk as it causes a melt down.

He can't speak apart from a few words (which he can't say properly and tends to regress with them) so he can't tell us about his day at nursery, he can't communicate his needs, he can't really do anything vocal due to him being non verbal and it's sad because he's at the age where he should be able to tell us things and I feel like we're missing out on the cute silly things toddlers say because even if he talks in a few years (hopefully) we will never get that back.

He doesn't like to socialise. When I go to pick him up from nursery every single time he is as far away from the other children as possible, in his own world doing his own thing. He gets distressed if an unfamiliar child goes near him and even his sister isn't allowed in his space.

It's really stupid but I feel like I'm grieving which I'm sorry to parents who have lost their children, I don't mean any disrespect. I just mean I feel like I've lost out on my child having a normal toddlerhood, the exciting times they have and just having a normal toddler and I must stress I absolutely love my son, I couldn't love him more but the emotions are sometimes a little hard to bare and I find myself crying most nights.

Can any SN parents tell me if it gets better or at least will I be better? Will I be able to deal with my emotions and be better for DS?

Thank you everyone, it's lovely to have some support and know It's normal and all part of the process.

I'm gonna check out the local offer with LA and see if there's and SEN parenting groups.

I've just booked DS onto an activity with BEEUNIQUE so hopefully he'll have a lovely day and we'll meet some local parents.

I think we've gotten everything in place for him, I'm just trying my best and that's all I can do really.

I have a ds with severe autism and yes the early years are the worst by far with all the unavoidable comparsions with typically developing toddlers , it's natural and normal to feel cheated and let down by life and so alone. You need to find your own group who are in similar circumstances to at least reduce the isolation. It is an emotion similar to grief and yet you are caught in the double bind of feeling guilty for feeling grief when apparently not 'entitled'. Our grief is open ended and has no clear beginning or end but it does blend back into every day life with time

Oh I didn't know this. Thank you. I'll contact them after the holidays and see what we can get sorted.

Have you watched 'There She Goes' on iplayer? It's not perfect but for us many of the scenes were eerily familiar. It has flashbacks to the little girl's infancy / toddler years too.

I haven't watched it all as it made me really emotional but I think I'm gonna give it another go.

Thank you, I'd actually forgotten about it.

In your situation I wouldn’t pay for a private ASD assessment . Your DD already has a team of people around him to support his needs. A private assessment may give you answers sooner (and would be accepted by the NHS) but won’t give you a higher level of support. It’s worth waiting for an NHS one and spending any money you would have spent on securing a really good EHCP with therapies included.

Is it that at the moment he can’t walk or have you seen him walk but he tends to choose not to? Could you put toys etc just out of reach to encourage him to move to get them (even if it is just crawling or bum shuffling on the floor).

The Hanen books are really helpful: “It takes two to talk” and “More than words”. They are not cheap but they are very good and informative. They have got loads of tips and information to encourage communication etc.

You mentioned that he is not really saying much and so can’t really communicate. Have you put something in place for him to find another way to communicate? This might alleviate frustrations. If he is suspected of being on the spectrum then PECS might be a good starting point (picture exchange).

He's never walked. He can't stand up unsupported and refuses to walk holding hands etc.

We're encouraging him and doing everything physiotherapy has suggested, it's just he'll do it in his own time they say.

I'll check out them suggestions, thank you.

I’m sure things will get easier in time! If you haven’t already then you could try a walker to try to encourage him to move around to increase muscle tone (since you mentioned he doesn’t like walking and holding hands).

As I mentioned you definitely need to help him to find another way to communicate if he is struggling verbally. He needs to be able to communicate his basic needs eg when he is hungry, tired, ill, thirsty etc. If PECS suits him and he understands how to use the pictures, you can add different boards with different pictures as time progresses - breakfast board; activity board; going out board so he can have more of a say in where you go when you go out etc. This might also help to bring him out of himself and to be more aware of what’s going on around him. When he chooses and exchanges a picture card for the item he wants you will wait to see if he verbally attempts the picture on the card, if he doesn’t then you will say it for him e.g. “apple” and then you get him the apple. In my experience it often encourages children to talk in time and hopefully it will be the same for your little one.

Be kind to yourself and try to take some “me”
time each day. You deserve it 💐

Please don't say you're being a bit silly. You are NOT being silly! I have two autistic children. Luckily, their speech is great, which I think makes a huge difference, but the grief is real. And the envy. Anger too, at times. It's all valid, and it's not silly, it's natural.