Does anyone else feel totally responsible to find the best care for their SEN child?

[mrsforgetful]

My psychologist said today that i am wearing myself down due to my determination to solve every 'issue' that presents regarding my AS boys.
(ie diagnoses,lunch time problems,eating problems,statementing,2nd opinions etc)

She says i have to accept that i can only do so much and i have to slow down. (she likened it to my realife obsession with containers and boxes and the reality that you can never find the perfect box for everything!)

However....i cannot accept this- though i accept i cannot personally 'do it all' i feel sure that out there somewhere is the 'perfect solution/ person /therapy /support etc' for each of the problems....which means i have to hunt and find it.

Then when i 'choose' a method like writing to the school etc....i am very depressed when 'magic' doesn't happen overnight.

Good example is that 5 weeks ago i wrote to the Autism outreach team (copied to the paed/headteacher) about general concerns about the unsupported mainstream education of Thomas /10yrs/AS and a diagnoses for Leigh 7/AS?
.....i felt proud of what i'd written and since then the Paed has referred Leigh for a SALT assessment....

However- to date the Outreach team have not replied.

This makes me feel deflated and less confident to take the next step- which has to be to phone them.

Hope someone else out there feels as responsible as i do- thanks for listening!

My DH is beginning to experiment with ideas i give him to try and manage problems we have with AS etc....however i have to prompt him- I would love him one day to say that he noticed a behaviour/reaction and tried a 'strategy' (ALL on his own!!) He also still glazes over when i start talking about the 'A' word.

It's sad that i have to look outside the home for help- all i'd like my husband to do is to try to support me emotinaly - then i'd be better able to tackle PAEDS/SCHOOLS and LEA etc.Instead i am emotinaly drained before i even start. And then my husband expects me to 'behave like a good little wife' (if you know what i mean?!)....and to be honest THAT is the last thing on MY AGENDA!!!

DH is pretty good now with DS1, however I had to do all the running to get the diagnosis etc and we had some pretty bad rows about it with DH telling me I was wasting my effing time etc. Not a good scene. But much better now. I think part of the reason he was in denial is because he sees a lot of himself in DS1.

Same with DS2, basically it was me who decided we had to try the Ponseti method and me who did most of the organising/sorting/travelling to Sunderland (although DH has taken DS2 there today for a check-up).

my dh used to go mad if he found me reading autism books. So much so that I used to hide them under my bed. My Mum used to go mad as well. And my friend used to tell me I was mad t think he had autism. hmmmmmm

Once it became obvious that there was more going on than "mild langauge delay" (I'm still in a strop about that! ) - when ds1 was just short of 3- people stopped telling me off, and ds1 was dxed just over 3.

DH is VERY good now- good at dealing with ds1 and good at meetings. I'm taking him with me tomorrow for the review meeting. Don't feel like doing it myself this time.

He had to rearrange his annual review at short notice to make the meeting so he is good.

I've been meaning to post on this thread for ages but haven't had time!
First, birthday parties - soft play definitely a good idea. Partie with entertainers or games don't work for ASD imho. If you can find somewhere you can have to yourselves it works really well.
Husbands - very common for them to be more in denial than the mother, esepcially as more ASD kids are boys I think. I have suggested mroe than once that some research should be done into the role of fathers. My husband is unusual in that HE was the one who got on the trail of information and contacts about autism and had to drag me with him!
Guilt - the big one! I don't feel guilty at all about what we have or havn't done for our son and I'll tell you why...... are you sitting comfortably? I've been in the Special Needs world formally for nearly 7 years. THat doesn't sound long and I know people here have children older than mine, but I've learnt a lot in that time. I have always taken an interest in new theories, ideas, therapies etc but I do my best to evaluate them and then make a (joint)decision about whether to pursue them or not. I usually feel comfortable about that decision and occasionally will have some pangs and go back and find out more and rethink. Our evaluation always relies on two things, evidence of effectiveness in general and appropriateness for our son specifically. Having lived through what I call The Great Secretin Rush and stood fast about not doing it, I feel confident that our decisions are usually right. I've always had a rule that I will not pursue any more unusual intervention if it costs a lot or involves a lot of travel or upheavel and that has stood me in good stead. We've done music therapy, cranial osteopathy etc but always if its local, not disruptive and not expensive.
THe second point about guilt is that I have seen it make people pursue interventions and ideas that they later regret and then end up feeling guilty about! Quite a few of my friends have children who are getting near to 10 years old, they have been dealing with autism usually for 6 years or so (like me) and I've noticed a trend for those who've purused a lot of ideas to now be feeling guilty, sad and even confused by all the things they've done. One even said to me recently that it was like going through diagnosis all over again. So my message is, don't let guilt make you put your child, yourself and your family through a lot of hoops whcih take an emotional toll unless you're very sure you know why you're doing it and what affect its having.

Ooops! I meant to preview that message and pressed post by mistake. I wanted to say that I hope that rant about guilt doesn't sound too smug I just think its a good idea to set yourself some rules before launching in.

The other thing, going back to the title of this thread, is that I think the sooner parents of children with special needs and/or disability realise that THEY (WE) are the only people who are going to get the best for our kids then the better. Otherwise you are likely to only get the default option, the stock equipment, the standard or basic of everything. If you want more or better then networking with other parents and finding out what else is available is what we all have to do. Some professionals will help you with info and help but don't expect it and then you'll be prepared.

Oooh, I'm in full flow this morning. Back to the cleaning now..... maybe not, I can handle THAT guilt!

Thank you Davros - what a brilliant post. You talk such good sense.

very good post davros. I also agree about not going to far to try something. NO trips to America for us! My other rule is it has to be safe - so no secretin for us either

The other thing about husbands is that they don't see the children around other kids. When ds1 was 2 his behaviour at home seemed entirely normal- t was only when you put him with other children that he seemed strange. And the only reason he seemed strange was becuase he blanked other children who approached him.

I remember after months of mum and dad telling me I was imagining things they took him to a pub by themseleves. A little boy aproached him, he did his blanking and mum and dad arrived back home visibly shell shocked. It was the first time they realised somehting may have been up. His socilal relations within a family setting have always been very normal.

Magicians Forever I will have an image fo a birthday party we went to. Loads of NT kids , ds1 and my friend's dd. Ds1 and friend's dd were dancing round the magician- friend's dd was pinching balloons. The magicina was in the middle looking totally confused saying"um please sit down oo oo I can't handle this oo I need help". Had no idea why these 2 children were completely ignoring him.

Agree with Davros about parents being the ones who need to be on board to get decent care etc as well. Brought home to me with SALT maternity leave fiasco. The LEA have said that as its in parts 2 and 3 of the statement they have the responsibility to provide it and if the NHS don't they will pay for out private SALT to visit school. The proposed statement didn;t have it in parts 2 and 3- we insisted on it and refused to sign until it was. Thank god.

Ooooh! Was just about to post on this thread when I saw the dreaded C-word! Not the one with 4 letters - I mean CLEANING. Aaarrrgggh! I've got a joint visit from SALT and Portage in about 90 minutes and still this house looks as though it's been hit by a hurricane!

Back to the topic: Yes it does sometimes feel as though I have to arrange absolutely everything myself. Ds1 is on a very long waiting list for OT so I've had to start working on different exercises myself. SALT is usually only once a month so again it's up to me to find more things for ds1 to do in the meantime. It's a huge responsibility, especially when you're essentially making it up as you go along and praying that you don't do more harm than good.

Dh is almost certainly an Aspie and we had the long arguments where dh would say "There's nothing wrong with him. He's just like me!" He is now very supportive and tries to arrange time off work during appointments - either to come along or to look after ds2 while I take ds1.

Other than dh I have no other support (other than portage, which will end in a few short months). My family love ds1 but have no interest in his autism and still think it's attention-seeking on my part. They live only a very short distance away but have never looked after either of the boys for even 5 minutes. They certainly wouldn't dream of looking after them to give me a break. Nor do they come round to help out - only to criticise. I've lent them books, leaflets etc about autism. They read them and then 5 minutes later will say something like "Don't you think he should be out of nappies by now?" Silly me - I just KNEW there was something I'd forgotten to do!? SALT is also seen as something that only other children have. If I'd been a proper mother and talked to him more when he was younger then he would be speaking normally by now. I could rant all day but I won't bore you all with it!

Back to the dreaded cleaning....

Coppertop, how horrible, sometimes I think I'm better off having no family near enough to have expectations. I know MrsF also has a terrible time with her family. Its sad but it does seem that often family are worse than friends or strangers and just add to the burden
I love Jimjams story of the wobbly magician, so funny the silly sod! I also think that's a very interesting and true point about fathers often not seeing their children around other children. That's what really confirmed all my suspicions to me, I took my son to Crechendo when he was just over a year and he was SOOOO different to the others. I hope you don't all mind but I thought this might be a good place to post something written by an American parent on the topic of keeping our families together while looking after an autistic child (also aware this has gone a bit ASD specific). The writer is a man so ignore the bit about sex!!

1. Find something to focus on that does not involve your child or children. This should be something that has nothing to do with children. Possibly working on your home or playing golf?.

2. Get rid of the plastic friends who ask stupid questions about your child who has autism or who ignore the child completely. By friends that means family members in particular. You do not need this.

3. No matter what else you have to give up, make sure you and your spouse go out at least once a month without the children. In one case it was a group that went ballroom dancing and the conversation did NOT centre around children.

4. Force yourself to maintain some libido other than zero. Sex may not be the most important thing in life but without it every thing else is spoiled in a marriage. Having sex can be like taking a mini trip or vacation for just the two of us. Don't even try at the end of the day when you are so tired. Go for the daytime or sometime when the child or children are out or taking a nap. Most importantly, both spouses should feel free to initiate.

5. If possible, find a local support network of parents with similar experiences and/or something similar on the internet.

6. Consider a career change. Most corporate careers are totally inconsistent with raising a child with a disability.

7. Ask yourself what is really important in your life. If what is important to you is a shiny car, a beautiful house, a full wine cellar, nice vacations and maintaining family relations with relatives at all costs, then go ahead and call a divorce lawyer now. If your spouse and children are what is important, sit down and decide what you are going to do to keep your family with you. In another fifty or a hundred years you will be remembered as the saying goes...no one will care what car you drove or the house you lived in or how much money you had, but if you made a difference in the life of a child, you will be remembered.

Richard Freeman, father of Daniel and advocate for many other children
[email protected]
March 2004

Thanks Davros. Before I found mumsnet I used to lurk all the time on a US board for parents of children with autism, and I remember reading that the divorce statistics following an ASD diagnosis were shockingly high...

The divorce thing is interesting because I've always expected to find a higher rate among my friends and acquantances bringing up children with ASD and other disorders. IME it doesn't seem to be any higher. Although there are some I think they are people who would have divorced anyway. ANyone else find this?

the divorce rate for families bringing up ASD kids is supposedly 8/10. I do know a lot of single mums on support groups- more than here. I think a lot of it is whether the father handles the dx though. Some just don't - and in most of the cases that's why the divorce happened- homelife becmae too difficult.

Families. My in-laws can be quite dozy. We moved back to Devon to be near my parents and my mum in particular is a star. Very supportive without being pandering (no self pity involved in this house- I'm just told to get on with it- which I actually find helpful). My mum comes in about 4 times a week after work, and will also rearrange work to look after ds1 (or 2) whilst I have meetings etc. I don't think she's read much about autism, but she just gets it and understands it. She knows the difference between naughtiness and autistic.

Love the list davros- I saw the sex bit first and thought you'd gone all raunchy. Then realised it was written by a man

The hardest thing about my in-laws is days out. They don't understnad that to quite a large extent things have to be done around ds1- otherwise the whole day is a disaster. They just don't get that and still expect him to wait for them etc. It's hard work. And I think they think we pander to him.
The funny thing is becuase they respond inappropriately to bad behaviour we always seem to be left with bad behaviour once they go. This time it was pinching. MIL's yelping was very strong reinforcement (ooo interesting noise granny) and it took a long time (and severla bruised children at nursery) to sort that out.

I bullied my dh into coming to dd's exercise tolerance test yesterday. Feel a bit bad about it now . The poor man hates the hospital and spent most of the afternoon looking like a rabbit in the headlights, waiting for the truck to hit.

Oh diddums, it'll do him good