Family at breaking point.

Oliver is 6. He was diagnosed with autism 4 years ago. I struggled at first to accept it- how and why did it happen again, but that couldn’t last because he needed me ready to help him and fight for him and just love him. And I do. Max was diagnosed 20 years ago so maybe it helped that I knew what I was doing this time around. My family is now in the verge of breaking up because after four years, Oliver’s dad will not accept the autism or change his approach.

He’s not a bad man. Olly was his first child and he had such expectations that he thinks now will not come to pass. He doesn’t understand how Oliver sees the world, how he learns, when he’s just being a swine, the difference between meltdown and tantrum etc. Things I’ve had to learn so that I can help him achieve everything he wants to. I’ve modelled the discipline model, I’ve shown the speech therapy techniques, I’ve shown him how to play with children, I’ve talked to him, I’ve offered him counselling and helpline numbers and I don’t know what else I can do. Treating him like his sister will not make him like his sister, but he doesn’t get this.

The last couple of months have been so bad, I feel like I’m alone raising this family. If something happens it’s me having to referee and sort out the fall out. There’s constant arguments with him saying “I’m entitled to be angry” and me saying “you have to see through his eyes. Anger is no good anymore, it’s driving us all away”. Shouting at kids doesn’t work in this house. Loud, sudden noises make a situation escalate so fast. I’ve been saying the same things for 4 years and he’s just not listening.

Oliver shut down last week. I’d never seen it and I do not want to see it again. The playmobil pool was filled with water and Olly went to tip it. Olly and water is always a risky combination. Dad shouted “No” so Olly went to do it again. “I Said NO!” And then the pool got tipped. “NO MEANS NO!” So Olly ran into the living room and I followed as if he gets told off he will throw something or tip something. He was shaking. I tried to talk to him but he lay on the sofa covered his ears and closed his eyes. He shut out everything. I stroked his back and murmured to him. He lay there for a good while and I just let him calm himself until he was ready to let me in. Eventually he sat up and dad came in to see him but he just clung to me. And that was the point I told him to get help or go.

It may seem harsh but it’s been four years. He’s missing out on important things while being angry. I understand the frustration of dealing with our boys at times, the behaviour and lack of sleep is not a good combination. I understand any kid winding up their parents at times, hell, no one is perfect. I’m nowhere near perfect but I try every day to do the best I can, to learn, adapt, make learning fun, picking which battles are worth the fight. He refuses to adapt. I asked him if he thinks acceptance means giving up and he said yes. I disagreed. I think acceptance means you can open up to more ideas, different worlds, different rules. We aren’t like other families so why should we try to fit in with their “normal”? Why can’t we make our own normal? Why can’t we embrace our differences? We can think outside the box of norms to make life fun. If we keep trying to force our kids into a blue print they can’t fit what kind of parent does that make us?

If anyone has any constructive ideas on how he can move on it would be helpful. Coming from me the words are falling on deaf ears. We can’t carry on living in this angry fug. It’s not good for anyone especially the kids. If you do care to leave a comment please know that bashing him won’t help the situation. I can’t help him. He just throws that I’ve had 20 years to deal with this and he’s only had four. When max was diagnosed I was a single parent with no family back up so I didn’t have the luxury of wallowing. The boys don’t need fixing, they’re not broken. I don’t know how to change this mindset. We have to get through Christmas and then I suppose we will sort out the future. Over the last four years we’ve had the chats, discussions and arguments but nothing really changes. I’ve asked him how I can help, what he needs, how I can make it better, tried to support and be understanding but with no movement I can’t continue to do this. I’m not helping at all and I’m so tired of going over and over the same ground. I’m done. 😞

Xx

Why I blog.

I’d like to able to say I blog to do something useful like giving advice, being informative or a fount of wisdom like a lot of blogs. You can find advice on travels, hobbies, cooking, probably anything you can think of. People have very interesting lives!

I used to keep a diary. I’d write stuff down but I’m sure the people closest to me worried that I’d written about them and wanted to know but respected the diary rules too much to check. So for me blogging is really about just being a public diary of my thoughts and day to day life. Then if my husband and daughter really want to know what I’m really thinking they can read about themselves here. I don’t know if they do. I gave them the link, if they want to look they can and then talk to me if bothered. She requested I maintained privacy which is what I try to do with names and no photos, which is fair enough, but everything else is my truth. I say my truth because I suppose in any situation, everyone’s perspective is different.

So I got a blogging subscription. I didn’t want adverts I had no control over and I wasn’t joking when I said it was cheaper than therapy. A fellow blogger mentioned counselling and the cost the other day and I counted up how much we had spent and for not much return really. I’ve done counselling 3 times. The first time was an emergency 6 sessions block from the nhs. The second time was couples counselling due to outside interference and third was to fix things with hubby’s parents that they said they would pay for and attend and ended up not paying for any or coming to any that I was involved in. I think we have spent at least £800 on counselling. He got nothing out of it because he put nothing of himself into it. He doesn’t like people knowing his business, or showing emotion so he said “the right things”. It helped me but my opinion was if I’m paying for this then I may as well use it properly. Obviously I’m still a work in progress.

I started writing for me. To put down how I felt, to try to make sense of things. When you are talking sometimes hearing something out loud can make you think again or in a different way, so I hoped writing would do the same. Like I’m writing to someone not just writing in secret. I don’t know if this makes any sense, I’m rambling! Hubs said “will you be sad if no one reads it” and I answered no. He wanted to make sure I wouldn’t feel like a failure but I explained my reasoning and he was happy. I feel like a failure in so much of life, he was just looking out for me. Every now and then he asks if it’s helping and I tell him yes it is. I probably spend more time reading blogs than actually writing! I found a good gardening one. I found some written by people with asd and parents of asd kids, people with anxiety like mine, people who are starting life after uni, a great one who explores personalities and why we do things (Dr Perry- I’m always sending his links to my husband about the narcissistic personality blog posts), and some who just grab my attention as I’m flitting through instead of doing the mountain of chores I have lurking in the background.

What I say next may make me sound like a right saddo but I’ll say it anyway. I find I’m invested in these people. I cheer at their good news, cry at their heartbreak, listen to new ideas, remember how I was at the beginning of my own autism journey- they feel like people I know. I talk to my husband about them in the evening “we aren’t the only ones going to tribunal” and then proceed to tell him all about the troubles of others. And the triumphs. Due to all kinds of reasons I don’t have a sparkling social life. I don’t have many friends. I don’t mind, I’ve never been very social. But on line I get to “socialise” with a whole range of people I would never meet in my daily life and I’m thankful and grateful.

I don’t feel alone anymore.

Xx

Discharged from paediatric services.

  • We had an appointment at the hospital on Tuesday.  Now this post may be a bit random at times because I’m still trying to process it.  The consultant has discharged Oliver from the paediatric hospital service aged 5.  There’s nothing they can do for him.

Now on one hand it’s nice to have some honesty but on the other hand it’s 20 years since Max was diagnosed and there’s still nothing they can do?  I know the NHS is at breaking point, so I understand them wanting to lighten their books and get rid of cases where they can’t do anything. But it feels like we have just been basically told to get on with it.  The doctor said “yes his behaviour might be unmanageable now but it may calm down as he grows up.  We have no sleep clinic here it’s miles away and I don’t know how you go about referrals” which made me ask who does know?  Apparently family support groups can help but they are full round here and aren’t really able to help anyone else at the moment.  Social workers are overworked and we aren’t an at risk family so no chance of getting one of them.  School nurse should know more.  If anymore non-autistic behaviours arise see GP for a referral.  The problem is as I learned through Max, is that all behaviours are put down to autism once they have a diagnosis.

I feel quite alone now and that it’s down to me doing the speech therapy work- we have a great ST, he sees her once a month and she has given me her phone numbers so I can check I’m on the right track.  School aren’t doing his IEP’s, he actually got sent home with homework last Friday and asking around it was the same as everyone else’s- Finding Nouns.  So you can guess how well that went down.  I know he’s my child and my responsibility, but surely school should be doing their part as they agreed to take him and the extra funding he came with.

I wonder if deep down I was expecting more from the professionals, if I was expecting science had moved on in 20 years.  I suppose it has in a way because the doctor made sure to point out to me that it was probably something from my genes that made him this way.  It’s always nice to hear that.  We have our first appointment at genetic counselling next month so we’ll see what they say.  I think overall I feel abandoned.  It’s down to me and the ST to reach him and make him fulfil his potential- whatever that may be.  I am not trying to make him conform, like school is, I’m trying to find a way into his world and share mine and maybe meet somewhere in the middle.  I’m trying to find a way to ease his frustration and make him happy.  I’m trying to stop the violence and tantrums and tears.  I’m trying to get people to realise he’s just as important as everyone else and has a voice and rights.  I’m trying to make him know he’s loved, no matter what he does.  I’m not worried he will fail- he can’t, I’m worried I’ll fail him.

He’s different- not less.

 

xx