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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

feeling so low

16 replies

jerikaka · 09/05/2006 12:29

ds(2.8yrs) is on the waiting list for possible asd diagnosis. His main difficulties are with noise and gets hypersensitive after being exposed to any screaming or loud noise from young children. He doesn't cope very well with his younger brother (4 months). I really thought he would grow out of his intolerance to noise, which is why we had another baby, but it's not getting any better. We are on the waiting list for portage, but they don't think that we will get allocated a weekly visit until september. I am starting to struggle from day to day. I don't know how to make things any better, and I'm hating the fact that I spend all day saying to my ds that things are ok, when I don't feel that they are. I hate that my son hits me all the time and nothing we do seems to stop him. I'm going slightly crazy being at home all day with the both of them. Can anyone suggest any ways of coping?

OP posts:

dinosaure · 09/05/2006 12:35

Hi jeri,

My DS1 (now nearly seven) has a diagnosis of high-functioning autism. He absolutely hated the noises that my DS2 made (there's a two-year age gap between them). I vividly remember him standing staring at DS2 with what looked like pure hatred in his eyes! (They're actually really good friends now.)

Are there any ways iin which you can get out of the house for a bit? DS1 always liked going to 1 o'clock club and just running round and round outside, and I found that I could usually manage to supervise him there while looking after DS2. Is there anything like that near you?

Original poster

jerikaka · 09/05/2006 12:41

there are toddler groups, but because he gets so sensitive after he has been exposed to screaming children, i don't like going. my levels of anxiety are so high because i don't know when he's going to loose the plot next! we do go out every day to the park so that he can run around and he does enjoy that, i just feel so isolated.

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coppertop · 09/05/2006 12:44

Hi, Jerikaka. :)

I have 2 boys on the autistic spectrum. Ds1 is nearly 6 and ds2 is 3.3yrs. I also have a dd who is almost 2 months old.

Both of my boys have very sensitive hearing. Would your ds tolerate wearing earmuffs or anything that would muffle the noise a bit? My ds1 used to wear a hat over his ears and that seemed to help.

Getting out of the house is also a good idea. It helps to break the day up a bit and stops you from going stir-crazy.

Do you have any local pre-schools/playgroups etc that would have a place for him. Ds2 started his at 2.6yrs and it gave us both a break. The staff have been great with him and he also enjoys the structure and routine of it all.

If you are anywhere near a Surestart centre/group they are also great places for information about groups, schemes etc.

dinosaure · 09/05/2006 12:47

I know what you mean about the anxiety of it all. I left so many playgroups with a screaming DS1 tucked under my arm!

Have you got things that he likes doing at home that he can play with for a while by himself and give you a break? DS1 was two when he discovered a fascination for toy vehicles - buses in particular - which is really only dying away now. he used to play a lot with his sand and water table in the garden too.

Original poster

jerikaka · 09/05/2006 12:48

I haven't tried earmuffs. He wouldn't even wear a hat for a long time, though he is a bit more into wearing them now. I might see if I can find some.
I have looked into surestart, but they don't cover our area.
There is a nursery that could take him quite soon, and I think they would be able to cater for his needs, but it's £16 per session. I do need something to give me a break though.
How are your two coping with the noise of the baby?

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Original poster

jerikaka · 09/05/2006 12:53

I hate the way that everyone looks at you when you leave those playgroups with a look of "what's wrong with your child!" thanks for the other suggestions. it's so hard to think of things when you feel low.

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coppertop · 09/05/2006 13:13

£16 a session! Eeek!

Ds1 and ds2 have so far been okay with the baby. It helps a lot when they have somewhere that they can retreat to when it all gets a bit much for them. We used to have a big cardboard box on its side that ds1 and ds2 could go and sit in. If they were having a particularly bad day they would also close the box lid as though it was a door. It got a bit battered in the end but any kind of quiet and/or enclosed space seems to work. Ds1 as a toddler used to go and sit in a cupboard when he wanted some quiet. It got a few odd looks from visitors but worked well. :o

We also have one of those mini-trampolines with a handle. They are brilliant for relieving stress and using up energy. It seems to calm ds2 down a lot and also had the same effect on ds1.

Do you have an NAS support group in your area? They may have some specific info about your area. Ours arranges trips to a local softplay centre. The children (including siblings) charge around having a great time and there is no-one to stare or tut. Yours may have other things arranged.

Original poster

jerikaka · 09/05/2006 14:00

I hadn't heard of NAS support groups. I shall look into that. It's so nice to talk to people who understand. Thank you!

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coppertop · 09/05/2006 14:21

You're very welcome. :)

The Special Needs board is a great place to find help and support. It's been a lifesaver for me over the past 3 years.

reiver · 09/05/2006 20:53

If he finds a toddler group too noisy do you have someone else you could meet up with who has a child of a similar age? They could have a run round the park (even if they don't actually play together)but at least you'd have someone to have a natter with.

Original poster

jerikaka · 10/05/2006 14:41

I do meet other parents at the park as we go there quite a lot. I also have friends who I meet up with every now and then, I just find it very stressful, as i know that if he gets upset by the other children, then we are going to have a bad couple of days afterwards. I have difficulty convincing myself that social situations are worth it. I know they are, I just find it very stressful not knowing how he is going to be. My MIL has agreed to pay for DS's nursery fees until his vouchers kick in. My family are so kind, they just live a long way away. I had decided to move back to be nearer them to get the support, but we can't afford to move back to London.
One thing I did do was to go for a run last night, and I felt so much better for it. Feeling a lot more motivated today and because the weather is so nice we have been ablt to go in the garden and DS has escaped the noise of his brother for a while! Happy day! :-)

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reiver · 10/05/2006 20:35

Pleased you had a good day - the sunshine does help, doesn't it? I know exactly what you mean about the uncertainty of their behaviour when out & about. I find that's the most stressful too and it's a huge bonus when all goes well. We've got a hospital appt tomorrow and I'm getting worked up already as it can have a knock on effect for the next few days. Great to hear that your family are so supportive. Hang in there!

dinosaure · 12/05/2006 09:56

How have the last few days been, jeri?

Original poster

jerikaka · 15/05/2006 14:28

Veryt up and down. Went to see another nursery to compare to the one I've chosen and my ds lost the plot. He couldn't cope with the noise as it was a bit hectic. The weekend wasn't so bad as my dh was home, but today has been bad again. My ds was hitting me and his brother whilst I was trying to bf. Then progressed into half an hour of hitting and kicking. Don't know how to cope when he does that. My dh phoned in the middle of it and said to put pingu on, and though it does distract him I don't know whehter it is the right thing to do. I feel like he watches far too much tv. Health visitor supposedly coming round this afternoon (should have been here at 2pm), so will see what she says. Thanks for your thoughts though :-)

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earthtomummy · 15/05/2006 15:03

Pingu, Pingu,Pingu. My Ds is now 5 and being assessed at the mo. - poss. AS. He was 22 mos when DD arrived and didn't cope with her crying at all. Fortunately (?)he was obsessed by Thomas and played lining up trains a lot, but when he was kiciking off at feeding time I put on a vid. to keep him quiet. Your baby needs feeding and if it works, it is a temporary measure. I'm sure you do lots of wonderful things with your DS during the day etc. 20 mins of Pingu here and there is fine I think. When DD2 arrived I had DS1 who was almost 4 and DD who was almost 2 fighting whilst i was trying to feed. They did prob. watch too much TV but seem fine and still prefer running around the garden to watching TV all the same. Don't feel guilty. You have a lot to cope with and a baby who needs that bit of time, so don't stress re. TV. LOL.

Original poster

jerikaka · 15/05/2006 19:33

How long did it take for your ds to get used to the noise. My ds has such bad days that he starts kicking and screaming when ds2 breathes sometimes. I just can't stand the screaming and feeling like I am pschologically damaging my ds1 by having ds2 around. I just really thought he would get used to the noise having a younger sibling around, and for him to still be reacting in the same way 4 months later, I am starting to wonder if it is ever going to get any better. He has got a cold at the moment though, so I think that may not be helping. We are in the right channels to get help, it's just no one seems to be able to tell us why he is doing this, they just say that he needs speech therapy in order so that he can tell us. The rate that he is picking up language I think it's going to be a while before he can tell us. I just hate seeing him so upset, and also hate that he kicks and hits me when he's upset about the noise, it makes life so stressful!

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