Existential crisis - to keep working, go part time or quit?

[finefatmama]

DS1 is severly autistic and has no speech but his imitation has comeon really well so he will mime words. He's 8 and we have some concerns about his progress and have heard lots of horror stories about puberty. DH and I work full time but we now really want to accelerate the support he gets after school. We have not been fortunate with childcare as he has gotten bigger (he wears age 11/12 clothes). he signs auite abit but m,ainly for objects, he still cant tell whether he's hurt or upstet and the childcare settings are not very good with sign language so he tends to lash out from time to time. he's physically active and tends to run away. following a string failed attempts to find him suitable childcare, he now attends an afterschool club in a lovelymainstream school wher he spends most of his time running around in the field and getting mothered by some year 5 girls. He will outgrow that setting in a year or two.

i earn 3.5 times what dh does and the house is in my name. We had to borrow some money to start our aba programme and fund private therapies and interventions and are still paying back a fair bit. DH will not quit work as he has a lot of debt to pay and he gets apreferetial staff rate for them. If I quit we wouldnt be able to live on his salary as I pay the mortage and most of the bills. At the same time, i/we are desperate that ds1 acquires some speech and communication skills.

We reckon i also need to stay in this job because we will be able to pay for either a part time special needs nanny using salary plus direct payments or getting regular speech therapy if we find the right one. the job has now to include more responsibilities which keeps me on task when I get home and often after the kids are in bed so I have little time to take them places or get involved with any therapies. DS2 is in a private school which he loves and beause of the commute, we both barely get there in time to pick him up from the after school club.

I have just been invited to interview for a job which is 3 days a week and mostly from home which makes me available for therapies but unable to afford them. It will also mean moving ds2 to a maintained school. the job is likely to develop into a full time role in a few years but they assure me that it will remain a home based role. my concern is that if it became a requirement that I work onsite, the commute is even further out and I will be worse off.

Work is getting increasingly loaded as there are some viability issues which as now been passed on to me and this will involve making sure we double in size, finding and planning new buildings, staff restructring, 5 year planning and the whole works. Boss formally announced his resignation last nite and teh other person is suffering from exhaustion so continuity falls to me. As my colleagues have struggled, i have taken on more and on reflection I think the kids are not getting the best deal. I think it'll start to show at work as well.

I supposedly work part time (35 hours a week) which means that one 3 days, I can leave work between 3 and 4pm to do beat teh traffic, do the school run, take ds2 to flute/martial arts/choir and ds2 trampolining, check the homework for the week, do the laundry and cleaning mid week. i'm studying a level 7 course and weekends are for catching up on coursework, supporting the boss and my sister who's just left an abusive marriage with her 3 boys. I also get to sleep and extra couple of hours.

i need some balance and cant work out what I want anymore or how to maximise my opportunities. All I know is that I want the best for both boys. do we get a special needs nanny/pa or spech therapist who can give him some speech or teach him to use an aac device?

Help me sort my head out please. how do I get the best intervention for DS1 given the opportunities and constraints?

[2boysnamedR]

It's a hard one. I constantly want to walk out on my 28 hour a week job!

Can you just cut back more on your hours? No stress of moving job then. Sounds like they need you? Either drop a whole day / afternoon or leave every day at 2/3?

I have totally honest with work. They can see I'm close the the edge. They keep me happy as they don't want to loose me.

I don't want to work hard now but in 15 years time find myself with two kids that can not function at all in the adult world. I pay now or later ( or both if I'm honest but if I can minimise the impact on my boys future I want to)

[Redoubtable]

FFM I feel exhausted reading your list.

Straying away from SN altogether, what I get from your post is little sense of a direction.

You are being pulled in so many; your DS and his needs, work pressures, financial considerations, study, house maintenance, sister, other DS....what about your own health/needs/fun?

What (if any) is your 5 year goal? And which of the activities you are doing now is moving you towards that?

I may be on the wrong track asking that....but it's seems your post is about far more than your DS and his current and long term needs.

[bochead]

Take DS2 out of private school - at primary level there's not a jot between state and private for a bright child who is encouraged to read at home a lot.

Use the school fees to fund an ABA qualified SALT to administer a decent programme and hire a Uni student to do to a daily one hour session with him for a tenner. I've just agreed to hire a trainee SALT at this rate, and am now on the hunt for a maths undergrad lol! (the proper SALT comes really highly reccomended & I think it will be more effective than a TA with little interest as you'd get in mainstream school).

Likewise is there someone else around who can run DS2 to actvities? Often a sahm or neighbour will do it for a small fee - pensioners are good to ask about this sort of thing as even £20 a week makes all the difference to them.

Reduce your hours to 30 per week.

I took the mortgage out of the equation totally by relocating and am home edding while I retrain to work at home, so envy you your opportunity to do so now tbh.

[finefatmama]

I didn't do a five year plan before now, I did a 20 year one and am now trying to do it all at once and panic when I think of how much of the 20 year plan i havent accomplished. In five years, I'd like to be debt free with my DS1 sucessfully communicating and having his own interest and activities well on his way to independence (preferably not in residential care) and DS2 in grammar school. At which point we can afford to go on holiday and pay for a carer to come along if needed.

I will look round my neighbourhood but not sure how one goes about meeting or making friends with pensioners. I know this sounds silly but how do i meet them and broach the subject?

Where can i find a trainee SALT please?

no fun and no self just yet - I work until I crash and cant get out of bed, stay in bed for the whole day 'couch potatoing' then get up and start again. My dream is to be able to sit on a room curled up in a wing chair reading a bunch of novels or textbooks safe in the knowledge that the kids are happy, safe and able to look after themselves independently whether in the house or elsewhere. Has never happened but I have bought the books and keep staring at them in hope.

thanks for the useful tips. I usually feel like I'm cheating one DS to help the other no matter what i decide.

[AgnesDiPesto]

Can you improve the current support for DS1? Eg find a specialist school, unit, get ABA in mainstream, switch to private salt funded by LA. If your LA is a pathfinder you can ask for part of education to be via direct payments and switch to private salt (this is what we have done). Non pathfinders will have to offer direct payments from sept when the new law is supposed to come into force.

Can you get direct payments from social care to use to fund after school therapy

Does your DS2 enjoy all the extra curriculum stuff? Is it all necessary? Can you quit private school and spend it on tutoring if necessary for grammar. Would he get scholarship or (if your wage reduced) bursary for a private school at secondary where the extra curricular stuff is all in house? We've gone for the be poor, be at home and other DS at private school on bursary option so he doesn't miss out (and we don't need to be a chauffeur)

Can you take a break from your course?

Ask NHS or LA to fund AAC device

[bochead]

Student help - contact the students union of your nearest university.

Pensioners - church is always a good place to befriend one, or our trick is when walking the dog lol!

Aupair - if your boys share a bedroom (not even sure if this is possible!) for between 50 -100 per week + bed & board you could have someone on hand to take DS2 here, there and every where & do the odd bit of housework to stop it overwhelming you.

I have a disabled sibling, and yes that did mean we didn't get as much extra-curricular stuff/books/nice clothes as my parents would have liked as resources were diverted to the one with the disability. I realised as a teen that they felt guilty about it sometimes.

However I don't remember ever resenting it, and in some ways am almost grateful as it gave me a depth of perspective on life my peers didn't have that enabled me to shoot on past them in the work place, cope with stuff adult life has thrown at me etc in a way I wouldn't otherwise have been able to without that childhood experience.

Get in touch with abilitynet as they may have lines of funding for AAC device, or at least superior knowledge on how to get the best deal.

I'd agree re getting hubby to be more flexible. You may be many wonderful things, but god you are not, so he needs to be prepared to make changes too.

[finefatmama]

the dh conversation is one I am tired of having. He says there's no chance but hasn't tried and I cant control his actions. he has volunteered to do the laundry and ironing at weekend which is something but not enough. I don't think he can cope with the idea so claims to be working hard to impress his bosses so that he can get a promotion and I can reduce my hours. He's also not very keen to coordinate the therapies and interventions or train to do them.

[finefatmama]

ds1 attends an ABA school but there's no stimulation after 3pm and many of the skills are not generalised at home. there's no SALT input either at home or school though and I'm starting to think i's a missing link.

[salondon]

Haven't read all the posts. Will do and respond. But first I wanted to say your post has humbled me. I work 37.5 hrs a week and have one severely autistic daughter and I complain twice as much. You are a superwoman.

Right, off the read the responses and see if I have anything valuable to add!

[salondon]

Very useful responses. We use a student too. She goes to college during the day for few hours a week. But is available usually to drop off and pick up. Carry on some ABA style therapy.

I don't have a second child so I can't say how easy or hard it is for parents to divert resources from one to another. But I think its worth considering having an ABA tutor 2hrs/day for DS1 and cut back on DS2's activities.

Is DS1 interested in physical activities like swimming/walking or running on a treadmill?

If possible, think about not taking more responsibility at work also.

I will say this again, you are a superwoman!

[finefatmama]

thanks salondon. the reality is that i'm starting to too many things and none of them very well and if I'm not careful, it'll start to show.

they both like swimming and trampolining and will need someone there with them. Whenever we have had au pairs, ds1 gets frustrated with the basic English speakers so we have to find a native English speaker.

[bochead]

US, Aus or canadian au pair agencies then : )