My family is falling apart (severe autism / disability of child related).

[Fairylea]

I just need to let this out somewhere.

My life feels like it's literally holding on by a thread at the moment. Our son aged 3 is going through assessment for autism and developmental delay and my dh and I are literally struggling to hold everything together emotionally. Things are so stressful. My dh has a very demanding job and he is so stressed with the whole situation with ds he keeps making lots of relatively minor mistakes at work but because of the nature of his job he is terrified he is going to get the sack.

We have an older child aged 12 who I am desperately trying to keep an air of "normal" together for, even in the midst of everything redecorating her bedroom to make her happy and trying to have days out as difficult as they are for all of us but underneath it all life is just horrendous right now.

I feel like I'm struggling along trying to do my best... I applied for dla for ds, which we were awarded highest rate for and carers allowance for me which has made things easier financially but there are no support groups in our area. We are on the waiting list for ds to see the paediatrician (probably August- I've rung and that's the earliest they can say!) I've contracted the school he's starting pre school at in sept and they've been very good and arranged 1 to 1 support for him and also SALT.

Most of the days are just ds and I and I try to do things with him everyday but he can't go to toddler groups as he can be quite aggressive and possessive and doesn't know how to share and has no interest in anything. He doesn't even seem to care if dh or I are there, he is just stuck in his own little world. He doesn't play with anything, hardly speaks and has huge meltdowns which make it very difficult for us to do anything or go anywhere. I feel like a prisoner in my own home as he is so routine led and if he doesn't have his nap for 2 hours a day in the cot at home in the dark all hell breaks loose.

I've applied for a holiday voucher from family fund and I was all optimistic about it but now I'm feeling like it's all a pipe dream and how on earth are we even going to manage ds for a holiday in a strange environment (even a caravan is a strange environment) and without all the comforts of home.

Feeling so low and so worried about everything. The future.... dhs job... ds... I don't know what the fuck I'm doing half the time or how to get ds to interact with me. I've Googled every group and charity I cab and watched enough you tube videos to send my eyes square.

Just so lost :( .

I've posted on the special needs boards before but I can't keep up with the general threads and I wanted to start my own in a more general area.

It may be useful to check with the pre-school if there's an Outreach team attached- they visit and observe your child in school and advise the class staff on how to help, how to use autism-specific strategies to help him achieve his potential.

Initially this will be softly-softly, allowing him to settle in and get used to little routines, encouraging communication (like having him request his fruit at fruit time etc), toileting, making little choices (like playing with trains or going on slide etc) and just getting used to school life.

Schools are pretty much obliged to teach every child- so don't feel under any pressure to push your son into special school, if you don't feel it's right for him at the moment, or ever. With the right support, lots of children with autism get on v well in mainstream schools, while others are more suited to special school. Take your time and don't feel you need to make this decision anytime soon.

For September, ensure he has a transition book to read with you over the summer. Take lots of photos on your visit to the school of the classroom, playground, toilets etc and of the teacher and TA- and make a little story and print it out (use the Book Creator app to make things even easier/faster)- this will help make things nice and predictable for him as September approaches. You could also have some nice signpost-related things in the book, to keep him focused.

Also, he may benefit from lots of sensory activities- google 'sensory diet' and you will get a host of interesting activities- proprioceptive and vestibular activities (eg swinging, pushing heavy things etc) are often v helpful for children with ASC, as they help them to be more 'calm-alert'. An occupational therapist can advise you with this, if needed.

The most practical book I have found for little children with autism is by Liz Hannah 'Teaching young children with ASD to Learn'- lots of practical strategies and ideas for home and school.

For your older child, some Sibshops or Autism Awareness activities may be useful- even reading a book like 'Looking For Louis' can help to explain autism a bit- there's also a series called 'Tony the Turtle' about an autistic turtle, which even though they are kids books, they really help explain what exactly children with autism need in terms of structure etc. I actually find them more useful for explaining things to adults...

And finally, for yourselves, (if he is diagnosed) it may be helpful to attend an early bird or Cygnet course- this often helps with understanding and acceptance of diagnosis.

David Mitchell wrote a great article in the Guardian a few years ago about living with his son who has autism (available online), which I think must resound with many parents.

Xx

Hi Fairy, I'm really sorry you are all under so much stress. I have a healthy three year old DS, and find many days really exhausting so can't imagine how tired you must be. I don't have any experience dealing with a SN child but my DH is dealing with an employee who has a child in their early teens with autism and they are having some very tough issues to deal with at the moment, aggressive behaviour being a big problem. The father has come to my DH to explain the stress he is under in dealing with this and how hard it has been for his wife and him. My DH has been totally sympathetic and has taken some of the workload from this employee to take the pressure of him temporarily. They work in a very high powered environment. My DH just wants to help the employee and see this colleague succeed. It really might be worth it for your DH to share the difficulties you are going through with his manager. A good boss will want to help. Good luck.

Did not want to read and run.
Things that came to mind:
It is hardest up to age 8. But if you can spend those hard years learning how to connect with and help this unique child the cards have dealt you, there will then come a glorious bit when he is able to talk about how he understands the world, and suddenly it becomes infinitely easier to help him navigate. I wish people had reassured me about that around the four years mark.

Also, I think it is worth exploring your local home ed community. I know you are rural so there might not be a huge number of home educators near you. But in our (very rural) area, there are activities going on in one of the villages or the nearest big towns 3 or 4 days a week. I reckon half the families have an autistic child, some diagnosed, some not. You can just say that you are not sure school will be a good fit for your son, and you will be welcomed with open arms. There will be plenty of other children around of a similar age (younger siblings, for a start), and plenty of other children who can't join in with adult directed activities. So you could just be among other parents who are dancing a similar dance to you, but with older children in the mix, so able to offer a bit of btdt. There is a woman with a four year old who recently joined our group, and I can just see the stress falling off her shoulders every time an experienced mum interacts with her child in a way that shows she totally"gets" his struggles and is happy to roll with them.

Hi OP. A suggestion for your DH: he needs to consult HR about parental leave and flexible working as a matter of urgency. Don't be under any illusion that they're going to help, but he needs to get a paper trail for a possible unfair dismissal. If his work performance is suffering because of a dependant's health issues, this is a "protected characteristic" under law. His employer needs to make reaasonable adjustments to accomodate him. If they have a US head office, they'll be arseholes, but the tribunal can deal with them. He also needs to record EVERY conversation with management as Vaughan v. Lewisham.

I may be catastrophising, but treating my employers as the enemy has saved me a lot of grief over the years.

Hi Fairy,

I agree with lots of what has been said already, so won't reiterate, but I just wanted to comment on what you said about your son and sleep.

My son (ASD diagnosed at 22 months) used to sleep 2-3 hours every afternoon and I used that precious time to sleep myself (we were usually up at 5am) or to do something that I valued.

However, at about 2 and a half years, we dropped the nap because he was wide awake til 10pm and it was killing us. It took a while to get into a new routine, but he has now been going to bed and straight to sleep at 7pm for years - touch wood! - and he's 5 and a half now. The first weeks of trying to get a tired toddler through the afternoon were agony but focussing on the bigger picture got us through it.

My relationship with my husband has also taken a beating over these years but at least we now have some evening time to ourselves (before I shuffle off to bed at 9.30, exhausted .

Just my experience but may be worth considering.

All the best.

Thank you very much for all the replies. I'm sorry if I can't reply to them all individually but I have read and taken in every single one and it's been so helpful to read all your experiences and views.

I have had a very difficult morning today. It was the induction morning at preschool and basically we sat and talked with the teacher whilst ds played with the assistant in the background. Ds basically spent the entire time tipping all the toys out of the buckets and running about in circles. Dh and I were trying to concentrate to talk to the teacher and all the while in the background we could hear the assistant saying to ds things like "shall we build a castle with these bricks..?" and ds completely ignoring her.

The teacher was very supportive of ds although I was quite surprised that my meeting with the head teacher and her promise of the 1 to 1 support hadn't been relayed to the nursery teacher at all....! Bit disappointed really but obviously we told the nursery teacher everything and she said she would go back and speak to the head teacher.

We were there quite a while and when it was time to go we gave ds a warning we had to go soon (he was by then ignoring the toys and was trying to pull the hula hoops down off the wall....!) But ds was having absolutely none of it. We carried him out sideways screaming his head off with the teacher sympathetically saying bye and the other parents coming in looking at us like we were the worst parents in the world.....! :(

The next induction morning is 1st July so we just have to see what happens then really. The teacher said if necessary they will stagger entry for us. At this stage I'm not sure what on earth will happen or whether special school may be better for him.

He didn't stop screaming all down the road and to the park... only when he got out to run around the park he stopped.

Dh reached the park and burst into tears ! :( so there's us standing there, ds screaming his head off and running about like a mad man and me cuddling a crying dh.

What a day :(

oh god op, your poor dh , and you. my dsis was like your in the severe end and my mum struggled like that ,just relentless, it was hard for everyone . it will get easier my dsis now 23 still lives at home. is v. placid now she does have obsessiveness and is a night owl, 2 carers come everynight and my mums quality of life is in general much more calm. i know thats not much of a consolation.

*like your ds in the severe end

It's hard to tell how severe children are at this age. They all develop differently. Some i know have seemed much more severe than my DD but progressed past her. So don't assume anything.

(((((OP)))))

I wanted to pick up on what Disgrace said about treating your DH's employer like the enemy. I'm not sure that it's good advice (or, rather, that it's good advice in isolation).

I do think your DH needs to explain to his manager what is happening at home. I do also think your DH should document that conversation and any subsequent conversations just in case.

But it's by no means certain that his employer be anything other than sympathetic. In my experience, employers can be wonderful - lightening the load at work and allowing flexibility not otherwise available.

Depending on the size of your DH's company, there may also be support available. Some employers have help lines and confidential counselling available for their employees.

I also think your DH should give serious thought to getting signed off work for a short period of time. FWIW, my own employer would absolutely not hold it against me if I were to do this in the same circumstances.

My DC have SN (not ASD) but the immediate time before and starting nursery/school, was absolutely the hardest, I didn't think we would make it it be honest, so please do take heart it does become easier to deal with - you need to have hope. You have done amazingly well so far, to get DLA etc.

I only wanted to post to say my employers were also brilliant. Your DH sounds like I was, it just got to a point where it was all to stressful, I had a period signed off sick with "exhaustion" and then my employers put into place a flexible, reduced hours package - it was a godsend. Absolutely your DH should advise them of DSs disability as it gives him more legal protection, but I don't think it helps to think of them as an "enemy" when he is so stressed. You need some positivity (realistic of course) rather than negativity.

You will get much better advice from here and SN but I empathised reading your post, particularly with your DH as I was the sole earner which increased stress but no choice). It got better for us and I'm sure it will get better for you both, but try and get and use as much help as you can.

Do you have any friends or family supporting you?

Sorry I thought I would try and be a bit more constructive too so, other, practical things that helped us (and still do!)

*A sympathetic GP
*A consultant who was realistic rather than "hand patting"
*Time absolutely alone on our own each week for both DH and I, even an hour.
*I also remember filming DS to show people when I found it hard to cope, just for an acknowledgement of how hard it was - seemed to help.
*My parents who tried to help as much as possible, even though it was difficult
*Something to look forward to at all times, even a day booked off work, or an hours extra lie in at the weekend, a take away etc...

Mostly it was each other. Its very much like the early days of sleep deprivation with an NT newborn, very easy to get into a "competition" of who is more tired/stressed etc, but we just tried to look after other as best we could. I think it either makes you or breaks you as a couple, dealing with this.

Have you tried a visual warning that its time to go?
My ds was the same leaving somewhere or an activity coming to an end.
When he was the same age as your ds I carried a 5 minute sand timer where ever we went. I would turn it over and say sand gone finish ( we used makaton sign language too).
We also used visual timetables (still do now) so he knows whats happening throughout the day. It keeps anxiety levels down and helps them to see what is expected of them.
The early days are the hardest. Crying is good in my book sometimes you just need that release and just let it go.

Holidays:

self-cater. Then he can eat the food he is used to, and you aren't fighting over strange food in a hotel (with fish and chips as often as you like, obviously).

do a photobook before you go. On truprint and similar companies, you can make a photo book. Fill it with very simple text (like, 5 words per page), and pictures of exactly what will happen.

A picture of your car and a motorway "We go in the car"
A picture of the camp site "We arrive at the camp site"
A picture of the mobile home you'll stay in "Here is our holiday home"
A picture of the inside "there is one bedroom for X, one bedroom for Y, and a sofa for Z"

describe, with pics, the activities you are likely to do.

Read it to him every single day from now until the holiday. Take it on holiday with you. It then becomes a memento afterwards, too (actually, I have a family member who, bless her, often makes an "after" photo book after the holiday, with the real pictures of what happened to us).

That sort of thing can really really help manage transitions into an unfamiliar situation. It might be that he's a bit young for it yet, but remember the strategy for when he is 5-8 years old :) It made a holiday abroad and also a wedding weekend away possible for us when our horizons were otherwise pretty limited.

(oh, and make sure the last page says clearly that "after the holiday, we drive home in our car"...)

Hi,

I'm so sorry to hear that you are struggling, but I hope you hang on as there is lots of support out there if you know how to access it.
Have you thought of contacting the Scope Disability Charity Helpline (0808 800 33 33) as they are really good with these kinds of things. They don't do casework but they know the best people to talk to to gain access to things like funding, befriending and expert resources. It's really worth it!

Thinking of you xx

OP - we got DS's diagnosis last year (5.5yo), and it was a very hard time.

The whole process re-triggered anxiety problems for me - my super GP signed me off work for a fortnight after I'd taken a week off on his advice, gone back for a week and then was still struggling.

I think your DH really should be going to his GP and explaining what is going on. He sounds like he needs to be signed off work for a bit tbh.

Need to run now as have DS, but will try to pop back later if I can think of anything else that helped me.

Other holiday ideas:

1. Camping in a tent/mobilie caravan. The tent/caravan is yours and so provides consistency once he is used to it.

1. Choose somewhere you like and go there repeatedly so it too becomes familiar.

I have friends who use these approaches, though their sons are older than yours. Family 2 have now managed to add a second destination to the holiday list so they can now choose b/w Cornwall and Scotland.

Oh yes, repeat holiday destinations are tremendously helpful :)

We have also had success with repeat holiday destinations (Dorset and Isle of Wight).

We also had a good success with a bungalow with a huge private garden. It was great to have our own private space to play in, without the stress of DS struggling to interact with other people's kids.

Just a tiny thing, but if you can do short notice give the paediatric office a ring an tell them you'd be happy to take a short notice cancellation slot. It's a long shot but could mean you get an appointment before August.

This is the worst period, it absolutely knocks your confidence sideways. It gets much much easier as they get older, you get more support in place and they are able to communicate with you more. You are doing amazingly and it will get easier

Verbal warning may not be register childens with asd often v visual.
So make some photos of home car etc and show him the picture With five minute warning. Make sure he sees it.
Teaching him how big egg timer works good too.

Thank you very much... its been a few days since I've posted and I've been quite busy...! I've now got the application form from the local council to apply for respite care (although part of me feels like I'm not sure ds would cope with it at all, I really don't know). I've contacted contact a family and they've managed to find me a local group for disabled children a bit like a pre school group so I'm going to try and take ds along to that, if nothing else to try and make some new contacts. Also I'm petrified of what he's going to be like when he starts preschool in September because he's just horrendous around other children so maybe that kind of group might help.

Dh is taking next week off work. So I'm really hoping that gives us a chance to get our breaths if nothing else. He made another mistake at work this week but thankfully it's all blown over and he talked to his manager and explained what's going on at home so I hope they can be more understanding.

I've ordered some sand timers from amazon! Thanks for the suggestions. It's worth a try.

I'm just carrying on trying to do my best.. I'm finding at the moment one of the most stressful things is that dd 12 tends to try "over-parent" me when I'm dealing with ds if we are out together. For example, I'll try to calm him down and she'll almost mimic what I'm saying to him and it's too much for him and he gets very overwhelmed. I've had to talk to her and explain while I appreciate she's trying to help it's just too much for ds and she needs to leave the "mumming" to me.

I've talked to her a lot about autism and shown her lots of videos and so on but sometimes she clearly struggles with it, as we all do, like today we stopped in a supermarket cafe for a drink and a sandwich and towards the end ds had had enough of it all and starred to shake his head back and forwards really fast (stimming I think it's called?) and she is obviously uncomfortable by this and will say to him "come on ds / what are you doing? " etc when really he just needs to be left to get on with it and we go as soon as we can. ... Argghh. It's all so stressful.

But on we go! Thank you for letting me have somewhere to vent.