A little thing but so useful... 08 04 13

Axel slams doors... a lot... damaging the door and whatever it hits. I fitted door stops but he loves chewing on rubber things so he kept working at them 'til he pulled them off and chewed them to bits. Then the door would hit on the exposed screw. 

This has worked!!! 

A bottle brush head screwed to the shelf. Of no interest to Axel and saves the door and shelf.

Love it.

Not feeling so merry - 08 04 13

Axel largely moved out to stay at a care home two months ago, at 10 years of age. He stays here, home, two days a week. 

This is my first holiday with him away so much. Despite the fact that our two days were beautiful they were unsustainable. By the time I dropped him back I was physically aching and had had four hours sleep. (Partly my fault for trying to get him to sleep in a bed not the lounge. What was I thinking? I'd bought him a new bed, thought just may be).

With his sister home and not him, I feel his absence sharply. Axel not being here is not like a boy missing it is like an entire football club has left the building. His volume of noise and energy are incredible and my state of alert constantly high. Apparently the levels of hormones relating to stress are the same for parents like me and combat soldiers. 

I know I can not have him home more at this time. 

It doesn't hurt any less.

He's coming home later and my heart is happy about that.

LISTEN TO HEAR, RATHER THAN LISTEN TO RESPOND - 04 04 13

I feel a bit stupid.

I feel like I've only just really woken up to what I've been doing and want to seriously change it.

For ten years I've been (desperately) trying to teach Axel, change Axel, corral Axel to be more like me, us etc etc to be happy, to be safe etc etc and in doing so have not really stopped to know him. Really stopped to know him.

I get that Axel is super different and I've spent so much of my time trying to shoe horn him into a more me type of thing and I feel a bit of a klutz for not accepting him more and getting to know him. Appreciating him. Enabling him to be a him.

There. Dick. I've done it a lot but not nearly enough.

Perhaps this applies to all people for me. I'm so consumed with my meness I'm not really listening to their themness.

Damn.

Please say, you too. 

Eugh.

~ PUBLIC DISPLAY OF AUTISM ~ 04 04 13

If he falls to the floor, kicking and screaming, because there’s no chicken nuggets, it’s just his way of coping. Be patient, you’ll get your turn to order. If she bumps her head and starts to hit herself in the face, don’t stare, it’s her frustration. Mom will handle it, she see’s it everyday. If dad is cutting his child’s food, he’s not treating him like baby. He just doesn’t want his son to choke. If she ignores your child on the playground, she’s not a brat. She’s just not good at social interaction. She would love to play with your child, she just doesn’t know how. He may be to big to sit in the shopping cart, no, he’s not lazy. He wants to run around, but his mom needs to shop. She’s not up for chasing him today. If she has to be carried out screaming, it’s probably because of a meltdown. Be helpful, open the door. Don’t just stare or whisper. No, it’s not because she didn’t get the toy she wanted. If it were only that simple. Don’t talk to her like a child, unless she is one. Don’t yell, she’s not deaf. She may not talk, but she can understand. No, it’s not bad parenting. Discipline won’t help.
This is autism, it’s his life. Don’t judge him, he’s not judging you.

~ By Tina Moreland

JUST CALL ME ATLAS - 03 04 13

So I let Axel sleep in the lounge and yet 2.30 am again, here we go. 

In between trips to check his temperature, soothe him, offer him water, drugs etc he kept shouting incase I should accidentally fall asleep. After the first round of disturbance Anusha helped by decamping to my bed, hogged the duvet, pinning me to a small strip on the edge and took up breathing heavily in my face.

I offered Axel Calpol but he was laughing too hard and pushed it away all over me. What is that stuff made of? You could assemble space rockets with it.

WHO SAID AUTISM ISN'T A GIFT? Wash your mouth out. You're being negative, need to re-frame. How would I get frown marks like these as deep as the Grand Canyon if it weren't for my beautiful boy. I wouldn't have written this on Facebook if I was wasting my time sleeping.

I think I'm delirious.

I shouldn't drive heavy machinery today... like my body.

After only two days of Axel's Action Man boot-camp I am sad to say I'm grateful he's going into the care home today. I have a sprained ankle and a plaster for a sense of humour with no sleep. Even this, the 12 millionth viewing of Jungle Book isn't lifting my mood. But Axel's jumping up and down with joy. At least one of us...

The care home taunts me, telling me that he sleeps til 7 and then potters in his room til about 8.30!!!!

But then I try to see things through his eyes... who wouldn't want to get up super early to see this vision of beauty with it's increasingly interesting map of wrinkles? Eh? Just call me Atlas, holding up the World. No sweat.

Z zzzZ zzzzzZzz ZZzzzzzzz zzzz z

EARLY DAYS - 21 03 13

In August 2005, when Axel was 3, I steeled myself, armed with information to prove to the assessors at the Seaside View Hospital that our son had Autism. I wanted to win a diagnosis of Autism for my son so that I could apply for a statement of Special Educational Needs and access the vital therapy he needed. I avidly offered my evidence. Questions asked, notes taken and we were asked to leave, to go outside for a while. We stood outside in a children's playground barely breathing. We returned to the room and I spied that on the back of her sheet Axel had ticked three boxes out of three and I offered, 'Oh Axel’s done really well' and she replied, 'Oh he's done really well and turned the sheet over to show me that he'd ticked 11 out of the 12 boxes to assess for Autism. The first of many top marks in severity. I wanted to succeed but only just. Enough to get help.

As we left that day in summer, I vividly saw in my mind’s eye, a sepia-toned photograph. In it were an aged husband and I at the top with our two children Anusha and Axel sat with their respective husband and wife below. Below them were their children. The image was shockingly clear. I was surprised at its formality. I was saddened by it's poverty. In my imagination I had space for either of them to be gay. In my imagination I had space for a third child but none of that was there, just a traditional family scene. As we walked away from the hospital that summers day, Axel's wife and children were torn away. I was startled by the image. In my head, Axel would be no more than a quirky, adorable soul who would still achieve all I hoped life would afford him. With love, work and skills we would help him to be so.

Clearly my soul knew differently. Even so my soul did not sense how an irreparable tear would appear between my husband and I. No therapeutic tape could repair it. I want profound support to be immediately offered with a diagnosis. We were left to go home with a list and work out what to do next. Fellow mothers were my source of knowledge and support but what if you're not extrovert like me? We also have Amaze, an exceptional charity that supports parents like me. But what to do with the grief? The differences in the way my husband and I responded drove a silent angry chasm between us.

What would you have liked to support you? What do you want for people?

MIND ON SPIN CYCLE - 21 03 13

My mind is like a faulty washing machine that keeps thundering into a useless spin-cycle. Today, the Heads of Services make their final visit to investigate my claims and then we'll have another meeting to discuss plans for Axel. 

This is the illustration I drew to clarify the issues. On the right is Priors Court School. Everything on-site of 50 acres. A specialist school for pupils with ASC. Over two hours drive away. On the left, on my doorstep, is the solution he's currently in. Given that transitions are a huge problem for him the inherent fault is obvious but also the specialists are incomparable and the size of staff unwieldy. What I didn't account for is how happy Axel is to come home. What to do?

Spin, spin, spin.

Gratefully I'm off to AMAZE's course (brilliant local charity supporting parents like me) called 'Looking After You' ran by the lovely Sandra Chitty. A couple of hours of talking through issues, pilates and meditation.

Wonder if I'll weep again. Ho hum.

And I am grateful to his school and care home for they give their best to a very tricky little chap.