Introduction

[zamzamzam]

I've been reading for ages but had a bit of a rubbish week & feel the need to say hello.

I'm mum to three children 5/2/baby; ds1 who was five last month was diagnosed with ASD last year. He has a language delay of about a year, though in some areas he is ahead of his peers & others more delayed. He has huge anxiety problems and additional medical issues that mean we've had lots of problems with toileting, eating & sleeping.

We've spent the last year working with our paed, CAMHS, SALT, OT and a private behaviourist to get his phobias & some behaviours under control and life is far more bearable for him and us. School isn't an option for him at the moment - he isn't aggressive but is has huge confidence & self esteem issues. CAHMS identified him as being at high risk of self harm & OCD. He often speaks about himslef in very negative terms.

It is absolutely heart breaking since is he a bright, sweet & loving child. He has gone from being well advanced of his peers academically to one who is fairly avaerage - advanced in maths but not even willing to hold a pencil anymore (he used to do amazing drawings) - but we all felt that addressing medical & mental health issues was most important. Pre school turned him into a ball of fear who was absolutely unable to learn.

We have an ABA tutor who takes him out 6 hours a week to work on speech, social & life skills & to maintain the phobia work we've done. That gives me a bit of time where I can focus on the other children. I am so exhausted I can't believe I am still standing some days.

Our plan is that we will use an ABA based approach to try & teach missing skills. We've done the VB-MAPP assesssment with the behaviourist this week but I'll be doing most of the work because we haven't found another suitable tutor. Our speech therapist is due to do another assessment this month (CELF I think). I find all the asseements difficult to read, there are so many gaps & deficiencies.

I woke up this morning feeling crushed, I didn't want to get out of bed. The baby is asleep, dd is at nursery & ds is curled up next to me watching youtube videos. I don't know how I'll get through today, or tomorrow or any of the days after that.

Sorry it's so long I don't have anyone to talk to really.

You're a superwoman :) . I already find it hard to do ABA at home with ds as my younger daughter is quite demanding. Can't imagine how you manage with two younger ones!!

At the moment I do a lot of structured turn taking with ds and dd- it helps me balance things as it can be hard to do ABA with a younger one in the house. Hope that helps for you also.

Sorry you are feeling so down but well done to you as I know how much effort you need to put in x

You just have to get through one day at a time, which sorry I know sounds trite. But some days it's "okay, just get through the next hour... or the next five minutes.... " I'm have those kind of days right now.

It sounds like you're making progress slowly, even though it's exhausting. Sorry you are having such a rough time of it.

crying now :( most of the time I feel like I'm letting everyone down.

It's so frustrating. I think we're making progress e.g. this week he painted some pumpkin pictures with me, had a nice time at a little Halloween party (& put his costume on long enough for me to take a picture!), tried a new drink, stayed dry/clean for a whole day while he went out with his tutor, played nicely with his sister etc. Six months ago he'd lie on the path in front of the house & scream/sob/bite his hands if we tried to go out. None of that improvement is reflected in the assessments - just long lists of skills he doesn't have, reports from tutors about refusals, letters about his disorders. It would be far more motivating to have some good news for once!

Thanks for the responses, I really appreciate them :)

we get DLA & carers allowance that pays for the behaviourist, our tutor hours & nursery for dd (summer baby so she won't get a funded place until next September). Am very cautious about tutors now - we've had two bad experiences; not bad people just not able to help ds, we need someone with loads of experience.

Agree with justabout and everyone else. You're obviously doing a great job and it must be exhausting. A break or some time to yourself might help.

thank you - I did try to stop worrying for a day. My mum came around for lunch & brought chocolate for the children & nice coffee for me. ds is recovering from being ill & I'm getting ill so probably not the best time to do any general developmental review.

My dh took the VB-MAPP report to read in his lunch break & called me afterward to say it had made him sick with worry - strangely that made me feel better or at least not so alone.

ds is out with his tutor today, I need to attack the squalor & do the supermarket bleurgh.