My husband’s struggle

So when Oliver was diagnosed my husband, Leon was very angry.  Understandably so.  This was his first child (my older two are just mine) and he had hopes and dreams for him.  I warned him after the diagnosis that there wasn’t much else the hospital could do for us but he had faith that they would be able to do something.  We had speech therapy in place, a yearly “tick the box” appointment at the hospital, a GP, the EHC was starting and there was us.  So after our follow up appointment after the diagnosis he expected a plan of action.  He was disappointed- very disappointed.  He expected our marvellous NHS to be able to do something.  I had told him what it was like when Max was going through it and I think he expected more to have been done in 20 years.  It didn’t seem the right time to say “I told you so”, and we do still think the NHS is marvellous its just if there is no breakthrough there is no treatment – well no miracle treatment.

I tried to tell him that it had improved, he’d been diagnosed earlier, he’d got support in place at nursery school (5 hours) and he had speech therapy.  There is no magic pill, there is no quick fix.  It’s a slow but hopefully steady move forward with a lot of hard work by everyone involved mainly me being his primary carer and stay at home mum.  He’s still angry now, 3 years on.  I wonder if he blames me, I’ve asked him and of course he denies it but I wonder if he does.  We feel better if  there/s someone or something to blame, we can focus on that.

I don’t know how to help. He isn’t a talker, he won’t phone the helpline, he won’t go to the group that Family Point have set up for post diagnosis, he won’t talk to me.  The way he acts is like if he ignores it and treats Oliver like he’s neuro typical (NT for future reference) then by sheer force of will he will make it so.  Sometimes Oliver is an arse- no doubt about it, but a lot of the time it’s frustration or lack of understanding or overload on Oliver’s part.  I’ve told him to make his sentences short and to the point, one command at a time but he doesn’t do it.  I think if he accepted that it’s not just contrariness on Oliver’s part and that he tries so hard but just can’t be or do what daddy wants he would get a lot more joy out of family life and be more relaxed, which would be good for everyone especially Leon.

Now I don’t want to paint Leon as a bad man, he isn’t.  He is just struggling so much with this and I feel helpless.  We’ve both been through quite a lot in our individual lives since we met, and he has had his own struggles to deal with, friends, family and moving etc.  I just don’t want him to look back to this time and realise how much he has missed.  I’ve started saying when things are not going well “however hard this is for us, imagine how hard it is for our boys.  We struggle making sense of the world and we’re NT and can talk.  Imagine having no voice” it helps me too.  The boys don’t choose to be that way.  We can choose how we deal with it.  Accepting autism doesn’t mean rolling over and doing nothing.  It means accepting that we have to travel a different path, and different is always interesting.  We wouldn’t apologise for asking people to make allowances for other disabilities, so why should we apologise for our kids having autism?  It’s not bad behaviour, we aren’t bad parents, we are doing what we can everyday to make the world more accepting on both sides.

I love my husband, I would love to be able to help him be happier.  He has just got a new job which should be more interesting for him, it means the odd night away from home, which will give him a break from us, probably a full nights sleep but hopefully miss us all too.  And all our quirks!

I’m not perfect, I have bad days too.  I have Leon to talk to though so it makes it a little easier this time around. I had no one with Max, I know how lonely it can be dealing with it on your own. I just want Leon to know he doesn’t have to be alone through this. I’m right here to give him whatever support I can.

Diagnosis

With my older son, Max, the diagnosis took three and a half years so by the end of it I was relieved to know what he had, had an actual name and he could now be statemented and finally start school.  He was five when he was finally diagnosed with “classic autism”.  From 18 months his speech had disappeared, he was nowhere near toilet trained, he wasn’t sleeping more than 2 hours a night and his behaviours were becoming more odd.  He’d missed the start of school, they’d withdrawn his place after her wasn’t toilet trained, so he was on an assessment part time placement at a special school.  They ended up taking him full time once we had a diagnosis.

Then started the joys of IEP’s and IDLP’s and a lot of other initials.  No one seemed to know too much about the autistic spectrum specifically.  Pecs were introduced once he was well into the school and they were a “new system”, we used Makaton (like Mr Tumble) and he finally got speech therapy.  Oh and a free bus pass.  The joys of the DLA forms started, and the appeals for the said DLA forms.  His sister was only a year older and she hadn’t really known him any differently so she accepted him just the way he was.  She stood up for him, they got up to so much mischief together and they were siblings who somehow communicated and built a relationship.  She was his best friend.

When my other son started with speech problems I noticed earlier and phoned the GP not caring if I sounded like a neurotic mother.  Fortunately my GP are a family practice and have been with me since before my eldest was born.  They knew us- I know it’s rare these days to have this continuity of care and I do feel blessed.  The doctor who had been there for us through Max’s diagnosis now handed the mantle on to his son and his son’s wife.  She saw Oliver the day after I’d phoned and had a telephone consultation, and immediately put in a request for him to be seen at the paediatric hospital department.  He was seen, assessed with the Griffiths assessment, then had a full team assessment, from physio, to occupational therapy to an opthamologist.

As naïve as it sounds I originally phoned the GP concerned with his speech.  I thought a bit of speech therapy would be recommended and we’d go from there.  Even on the results appointment when it was with the top dog instead of a minion it still never registered, the words Autistic Spectrum Disorder came out of her mouth and I just cried.  How?  How could it be ASD again?  I’d done that and was still doing it everyday, I couldn’t do it with two of them.  It wasn’t fair!  I know that sounds childish but it isn’t fair.  Apparently everyone else in the family suspected, I’d just not let the idea settle in my head.  No way could it be that again.  I felt like I’d lost another son to ASD, I felt like I must have done something wrong.  His birth was not easy and they’d never diagnosed or treated me for the pre eclampsia they finally admitted I had once we’d both nearly dies in childbirth but I carried him and I should have made them do something so he didn’t have such a traumatic start which may have affected his brain function causing the autism.  I think as a parent you always blame yourself, I do.

With Oliver though, speech therapy was in place as soon as he was under the paediatrician and other help was in place well before diagnosis, so things have moved on some, it’s still a fight but now we kind of know what we are fighting for-any help for our sons.