Finding DS really hard at them moment.

[staryeyed]

DS is about to turn 4 next week. He has been diagnosed with ASD since 2. We are just having so many issues at the moment and Im finding it really hard to cope with him. Usually he is lovely, happy, easy going, most of the time most of his problems come from the fact that he has no spoken language and extremely limited understanding. Just lately he has been particularly hard work. It may be because he is missing nursery which he really enjoys or something else but I just dont have the energy. Im 39 weeks pregnant and really wandering how I will cope now with a newborn as well. At the moment it takes two of us 30mins at least to get DS shoes on (in another post), 2 of us to bathe him safely. He seems miserable about half of the time which just isn't him because he is usually happy. He is much more withdrawn, stimming verbally all the time, uncooperative getting dressed/undressed and nappy changing. Completely uninterested in anything I try to do with him. Very restricted in what he eats although we have made some improvements with enzymes. Im being completely inconsistent which isn't helping -making rules that Im not sticking to like no treats till after dinner etc, just because sometimes Im so lost as to what to do with him. Moan moan moan.......

Oh hun youre doing the best you can and sound like youre doing well what with the hormones too that must be taking its toll. Have you got any respite or a homestart volunteer? we have a homestart volunteer she is lovely but not that much use to be honest, better than nothing though and still battling for respite! Is there any family who could help you out at all?

My mum does help out when Im working (on ML at the moment) she has him 2/3 days a week before nursery while I work but she gets a bit funny if I ask her to have him at any other time so I don't like asking. DP works crap shifts so I end up at home alone with DS a lot and I think Ds gets bored as I cant get very far. We do have a garden that Ds loves and makes him happy but weather is rubbish and the shoes issue isn't helping. Hopefully once I have the baby we might be able to get out a bit more- If I can sort out how to take both DCs at once. We have been told to apply for NAS short break scheme to hopefully help over summer holidays if there is space.

I also feel very frustrated in how little Ds has moved in since he has been diagnosed- I thought he may have some words by now and a fair bit more understanding and this is with Part time ASD nursery and pre school ASD team and my input. We still have the same frustrations we had 2 years ago- trying to communicate with DS and get him to understand anything. He is also usually very affectionate but he keeps pushing me away at the moment.

Hello staryeyed - just a wild guess here, but DS must have been realizing that a little brother/sister is on the way? I am often surprised by how much my DS (language delay, possible ASD) actually understands or picks up even when he doesn't appear to.

I keep talking to him about his new brother/sister but he just looks blank. He does give my belly some strange looks though.

My DS2 has been a right nightmare lately as well Staryeyed, he is 4 in August and like your ds,w as dx with autism when he was 2. I am putting it down to him not being at school, as he has been asking to go every morning this week. He has been such a handful, loads of meltdowns, reusing to walk anywhere and just basically being hard work.

I really do feel for you. I was pg last year, ds3 is now 5 months old. It is really hard the last few weeks I hope he relaxes more when he goes back to nursery next week. Shame your mam can't see how much you need help, I can't believe she doesn'tlike to help you when you're not at work. I'd help if I lived by you.

Hi - I sympathise with your situation, DS1 was about 3 when DS2 was born and it is hard to imagine how you will cope but I would say that weirdly it has all become much easier though cannot really explain now except that you are forced to focus on something other than 'will i ever find an answer to autism' for a while. What is your main communication strategy - PECs/Makaton/Something Else? at the moment ? The getting older part is hard at times - My DS1 has progressed since dx however NT children progress too and at a very fast rate so in some ways the gap just seems wider. Is that maybe part of it and not just that he has not progressed?

Aww thanks 5inthebed. My mum would help if I asked but she acts all put out and usually have to have a reason- ie having to go somewhere not just needing a break.

cyberseraphim DS uses PECs but that has gone a bit downhill really at the moment. I dont think that nursery are reinforcing it enough- I think they use it at snack time and in SALT sessions only. He has been using it for a 1.5 years and his vocabulary with it is v limited to mostly food. That is again something I have been very inconsistent with- For ease I haven't been making him request things every time.

DS has definitely progressed in some ways ie his motor skills/fine motor skills/eye contact etc but his language has not v much at all. He literally has no speech when he actually did have before. His understanding has improved but marginally for 2 years and mostly understands words relating to food. Because of his lack of progression the gap between him and other children is huge.

Dd1 (AS) was at her worst between the age of 3 and 4.5 years, mainly with sensory things like putting her shoes on, bathing and brushing hair. I can remember having to take her shoes off and on again over and over until they were ok. By the time she was 4.5 a lot of her sensory problems just went.

Dd2 (HFA, almost non-verbal) has just started to be a handful, she has meltdowns over the tiniest of things (mainly if i do things in the wrong order, shoe's before coat etc..), i am hoping she will grow out of it as dd1 did but i do worry as dd1 had great speech and dd2 has almost none. Dd2 is doing well using the PECS but when she has a meltdown she doesn't want to go anywhere near PECS.

Fingers crossed its an age thing.

I can sympathise Staryeyed. My ds is 4 now, and has been diagnosed with autism since 2.3. He had a few single words then, and now has none. He has also become much more withdrawn, and has become so obsessed with openng and shutting everything. His gross motor skills have improved, so he has started climbing everything, and tying to jup off, which is frightening to say the least since he has no understanding of danger or depth perception. He has taken to waking up and banging about in his bedroom, climbing on top of his chest of drawers and attempting to jump off. . He is also having alot more meltdowns now, and alot more unco-operative with everything including nappy changing. He has alos learned to undo his nappy and will play with the contents, which he has started to use for 'finger painting' and 'splatting'.
He also refuses to walk, he won't put his feet down on grass, or pavements, and won't wear his pedro boots he only wants to wear sandals, which has not been great with the weather.
I expected some improvement by now aswell.
I am pg aswell, but only 17 weeks, the spd has kicked in now, and together with my 6 year old with asd, I find them exhausting. I feel so guilty for saying that I am exhausted, almost as if I am not saintly,
The due date is in September, so luckily after the dreaded statement review time, and when the kids are back at school. Although I don't know who will look after the boys, I will probably have to go into hospital on my own when I have this baby. Dreading the logistics of that.

Deeja- your Ds sounds very much like mine. I keep having to go fish out Ds from the baby cot where he has been bouncing. He climbs on the window sill in his bedroom and jumps off. I also suffered from terrible SPD which has strangely got better now. Is there really no-one to go with you to hospital?

Marne- I am hoping it is just a phase because he is usually such a lovely boy so cheerful and cheeky.

We are also doing the statementing process at the moment as well as trying to get a place for Ds in a special school.

Apart from this forum I do feel very alone in dealing with this Although DP is supportive he just isn't here a lot. I really should join a support group.