I feel like I could crumble; I 've had enough

[lou031205]

Everything seems so hard at the moment. I am so tired I don't even have the energy to cry.

DD1 is refusing to walk and insisting on sitting in the buggy alot. I told the paed, and he asked me to log each time and video some episodes. But what do you video? "DD we need to walk." "No, my feet hurt, I need sit in buggy" - exciting stuff.

I also told him about how difficult it is getting her out of preschool. He wants me to video it - but I can't. I can't keep her safe and video her. Friday was so humiliating. I collected her and she was in a real michevious mood. Instantly went and hid under the sink in a ball in the toilets. Writhing around so I couldn't get the crelling on. DD2 had to just wait in the hall. A teacher helped me get the crelling on, but then DD1 just dropped to the floor. Wouldn't take any weight at all. This carried on towards the car. DD2, being just 2.8, ran on ahead, but DD1 wouldn't walk, so I had to leave her to it while I chased DD2 because she was heading for the carpark, and cars were arriving. DD1 saw her opportunity to run away back towards the hall. I had to get DD2 and go back to the hall. So in over 10 minutes I had made no progress at all. DD1 then wouldn't move an inch. So a teacher had to carry her to the car so that I could leave. I was humiliated.

This sort of thing is happening every single session in some way or shape. Worse when DD2 is there, because I have to try and keep them both safe. The consultant wants video, but it is hard enough to keep them both safe as it is, and carry their lunchboxes, craft, etc, let alone having to hold and focus a video camera. I just can't do it.

Wheelchair services say that DD1's Mac Major will be ordered soon, so I will have to put her in that, but I just feel that I can't communicate all this to the consultant, who sees DD1 as 'not too bad' because of course he sees children who can't walk, talk, move, eat, whatever. So he thinks DD1 is doing well.

But he doesn't see the absolute trauma of every day life we have. He said that DD1 would go to mainstream school and 'settle quite nicely' - anyone who sees her in the community has said that she needs full '1:1 support in mainstream, and has been relieved that the LEA has come back with Special School.

Her latest IEP, one term before the end of preschool is "to sit in a small group and listen to a story" and "to talk in a small group". She is 4.4. Why does her consultant see her so differently?

We have had no OT since December. No SALT at all, ever, really. Last saw her in November, and have a meeting on Monday with her and her boss because I have complained.

I tried to get her to dress herself today. Nightmare experience. I have spent 45 minutes encouraging, nagging, shouting , crying just to get her to put her own knickers on with help, and pull her trousers up her legs. Surely she should be at least trying to put something on by now??

I am just fed up with it all. I can't go anywhere on my own because I can't handle her and the two younger ones. I can't even handle just DD1 & DD2. DD1 is too unpredictable, unsafe, unco-operative.

She is only 4. What is it going to be like when she is 5, 6, 7, 8? Getting bigger, heavier, stronger. I just don't know what I can do.

Typical consultant imho.

They deal with children as sat before them in the clinic; we deal with children out there in a real world full of dangers and distraction.

And they usually have very limited ideas of what expectations are made of children in different age groups; even the ones with children of their own hardly ever have any experience of being SAHDs, so they really won't know what goes on in an ordinary child's life.

Our rheumatologist told us that the main thing is that dcs must not use a wheelchair however much they are in pain as this will label them as disabled. It did not occur to him to think through the practicalities of this: how do you get around the school, if you can't walk? if you can't go to school, how do you get an education? if you are not letting your child access an education, how do you think the authorities are going to react? if you cannot get out of the house how are you going to have a social life or even get to the doctor's?

I thought I had opened his eyes when I took dd to his surgery and let her crawl into his room on her hands and knees, but the effect does not seem to have been lasting as he made the same fatuous remarks about ds 3 years later.

In your case, yes seeing a few videos probably would be an eye-opener for him; the question is just how you're going to work this. Is there any way you got get a friend to come in with you and do the camera work?

I'm sorry you're having such a shit time. I can't imagine how hard it must be. But agree that the video is probably the evidence you need for the consultant to take you seriously. Is there a friend/sibling/partner/even a teacher who could help out?

Sending hugs lou,

Dd1 would not walk outside until she started school (without a lot o fuss), she's now 6 and offten moans that her legs and feet hurt but last week managed a 3.5 mile walk . I always though this was linked to her AS but now we know she has low muscle tone and possible dyspraxia.

Dd1 changed a lot when she started school, we started walking to school with her on the buggy board but within a few weeks she was walking (even though it took half an hour rather than the 5 minutes it should take to walk to school). She now runs home from school with her friend.

I agree with what the others have said, video her and show the consultant.

Do you get any respite? I've got three chiildren as well and the youngest has asd. It is really hard to meet all their needs and we got 4 hours a week respite. This allows me to take the other 2 out to clubs and things and not be continually disrupted by ds. For us it just involved a social worker coming round for an hour to do an assessment. I put it off for ages as didn't like the idea of social services involvement, but it wasn't intrusive at all.

The other thing is I wouldn't be ashamed of approaching preschool about this. They can see you are stretched. Could you not wait in the car with the younger children and they bring your dd to you? Would it be easier for your dd not to be in preschool? Many children don't go and are perfectly fine (although you might reasonably want the break).
Do you have a partner to give you a break? Can you just escape for a coffee somewhere with a magazine.
It is really hard and no one will really understand it who hasn't been there.

Social services turned us down for respite. But we do get 2 hours per week Homestart. DH is fantastic, but of course works in the week.

Thanks for just letting me vent.

If you want more respite go back to them. Sometimes with SS it can just be down to who you get on the end of the phone.
The other thing dh and I had to accept, particularly when dc were as young as yours, was that we had to divide up. So one stays with the child with sn and the other takes the rest out. Not ideal and didn't happen all the time but was needed by the whole family so that we could have some normal family time.
Take care

When I read your post Lou I had a flashback to being seen by nursery teacher walloping ds1 in the corridor at preschool we'd already been trying to leave for what seemed like four or five hours, he'd gouged bits out of my arms, screamed endlessly and flailed about on the ground. The horror and shame of the look on her face but it did stop, eventually (to be replaced by new horrors of course but that's a different story). I would gladly come and hold the video camera for you if I was anywhere near (I'm in Cambridgeshire if that's any help).

Can you get some more respite hours from homestart?

That's really kind, niminypiminy. I am in south hants, so too far, unfortunately. Homestart are great but they can only offer 2 hours per week.

I just feel so drained.

lou - i'm not sure if this would be helpful or not but I have a buggy that I have used in a similar situation to you (I have 4.5yr old ASD DS1 and 2.2yr DS2) which is this one
The back seat is plenty big and strong enough for a 4/5yo and the best bit is that both seats have harness so keep them contained!
It was given to me by a very kind mnetter a while back and I have much less of a use for it now so if it would be useful to you, you are welcome to have it

Hi lou

Sounds like a nightmare. my ds isn't a bolter but has such poor spacial awareness he gets easily seperated from me when out and if my 18 month year old is not in the buggy its quite dangerous.

The getting dressed is v familiar - so quick when we do it but takes forever if he does. We have to hand him everything the right way round and even then he gets easily distracted. This is my ds's biggest prob - he can't concentrate long enough to learn well. I do end up shouting and shaking his shoulders to get his attention

Can you hand your video camera to the nursery staff and ask them to video a session or two - particularly the leaving shennanigans?

Fel1x, that is very kind of you. Do you have an email address I could contact you on? Alternatively I can be contacted by lou031205 at googlemail dot com. That might work well, thank you so much.

I may have to ask the staff to video., mummysaurus.

sorry it's so tough, and the cons is a bit airy fairy.

Thx Fel1x, I have replied

Could you use your mobile phone to video then bluetooth to computer ? Still not easy but easier than fiddling with a camera. I find myself filming incessantly now that I have an I Phone cos it's so easy to do.

Of course you can't bluetooth with an I Phone but getting stuff to computer is easy peasy

Good idea, but I just haven't enough hands as it is.

I saw a camera today that you wear round your neck on a collar - meant for pets !

Nothing to suggest but feel your pain. Doesn't happen very often but just occasionally DD goes into meltdown on the way out of school. She is on the first floor. DS (who is NT) didn't walk until 21 months and trying to carry him downstairs when she was in meltdown, with everyone staring....horrible!