Inclusion is more than just being present

Sitting in a restaurant with Dylan in the midst of the half term rush and bustle.

There’s crying babies, noisy excitable children and the usual hubbub of people enjoying their lunch. Sitting here with Dylan is a marvel. Not do long ago, we used to hide away in holiday time. It was too busy to go out, it was too much for Dylan to cope and we achieved nothing. Dylan became distressed and self injurious, Dad and I felt self conscious and out of control in the glare of stranger’s stares and Josh and Grace well, they were just there being brought up within what felt like isolating chaos.

So to sit here today with Dylan calmly managing the situation (I wouldn’t say he’s enjoying it) is nothing short of amazing.

To be able to go out and eat in public is integration, something that we as a family have strived for for many years. For Dylan to order a refill of his drink, be heard, listened to, acknowledged and addressed, now thats inculsion.

Strike my previous observation; now Dylan’s enjoying it 🙂


Every Little Helps

Adapting to change is a concept which can be difficult to us all, notoriously to those with autism. This weekend Dylan has made fabulous adaptations and taken it all in his stride.

Saturday we went to Dylan’s usual supermarket. He knows the layout here. He knows where he’s going and we often go there late on a Saturday afternoon so it’s part of our routine. As usual he had a small list of 2-3 items he wanted to buy. He got his own basket and we wander around so he could pick up the bits he wanted to buy. It’s only when he got to pay that he realised he didn’t have his wallet and looked to us to pay for his basket of goods.

Now maybe a few months ago when Dylan was begining to piece together the elements of holding a basket as it got weighed down with purchases or if he was still at the stage of practicing queueing up or navigating the store we would step in and pay, but we’re not, Dylan knows the routine and most importantly he knows that if he wants to buy something then he needs his money.
So I toughened up, we left the queue and went back around the shop returning the items to the shelves. Dylan’s not happy. He held it together and I just keep reminding him; he needs his money if he wants to buy anything.

We get out the shop and back in the car. It’s late and we don’t have time to go back to the shop once he finds his wallet at home. Again he’s not happy but with a clear explanation we manage.

Now tommorrow is a tricky concept so naming the day as Sunday helps Dylan correlate the time frame of how long he has to wait with his daily schedule. After a few minutes of support and reassurance Dylan comfortably understands ‘Sunday is battery and Pringles’.

Fast forward to today and I decide that we will pop round to the small super market around the corner, Dylan’s happy with this and we walk in the rain instead of driving. This is another compromise for Dylan who would always rather take the car for journeys, especially when the weather is bad. But he happily walked.
He adapted to a different shop, grabs a basket and navigates the shop to find his chosen items, paying with his card and we then walk home together. So many changes handled so well.

So easy. Finally.


Some days, seem to last forever

UPDATE : So we got home to a message on the answer machine, apparently the social worker did not feel comfortable with how our conversation was left and although I have her contact number she wants me to ring her back to discuss. Fearing that I may have ballsed things up with my emotional outburst earlier (because thats how they work – make you feel neurotic) so I rang her back.

Turns out she doesn’t want me to feel negative about our conversation, she isn’t comfortable with that. She insists on arranging a meeting even though she can’t specify why or which assessment or report we need to meet for. I give in, not wanting to appear obstructive and we arrange a date for mid March, I agree to the first date she gives me as available.

‘What time?’ I ask,

‘Well,’ she says ‘Lets make it late afternoon, so I can meet Dylan after he gets home from school, that would be nice.’

‘Erm, time doesn’t matter, Dylans home schooled’

‘Oh? Is he? You have him home with you all day, everyday?’ she questions
‘Maybe we should try and review how much support you’re getting then….’

Dear God give me strength.



Some days.

Some days it all feels too much.

Just had the most bullish, uninformed, insulting and deceitful encounter with a social worker. She reduced me to tears and poor Grace who could see the 40 minute phone conversation escalating kindly went upstairs to distract Dylan so he didn’t have to hear me talking about him.

She made me cry, on the phone, both with sadness and fury in a way which even now recounting it has made my eyes sting and my throat tighten.

The biggest fight is not with autism but with uncaring power-hungry professionals who are embroiled in a nasty system of beating you down until they pretend to be able to offer assistance.

She lied. She said that I need to appear depressed, I need to cry and tell her I cannot cope before she will complete her paperwork. She told me that I have a parental responsibility to pay for Dylans extra requirements due to his autism and I can’t expect the council to help.

During the conversation she said that she would come and visit. She was assess Dylan. After all, she should meet Dylan. I told her she had, back in August. She said she didn’t remember and I need to provide more info for her report. I need to give them further breakdowns of finances and list Dylan’s needs, not just those already documented on previous reports. But more. more. more.

I snapped and told her to shove it.

Through sobs I told her she was the only element of my life that makes me feel depressed, or cry. She works for a system which is selfulfilling and destructive to the tranquillity of our family who pull together to make our lives work.

The whole phone call was about her needs, her report, what she or her panel needs. I told her in no uncertain terms my priorities: Dylan. My family. Keeping things going.

And that her and her requirements were not helping. Not only do I not want an increase of support I would rather withdraw from any support. To lose payments would be easier than trying to jump through their many hoops but that’s Dylan’s payments and the only way he can access some life outside of home.

I gave it to her both barrels.

Came off the phone and sobbed. Nothing resolved, only frustration.

So now I’ve taken the kids out. I can’t cry in public so I decided that being outdoors is best. Dylan’s having his iPad screen fixed so we’ve nipped over to Costa for some overpriced lunch.

This is what really matters.


Fine dining

A night out with Dylan and I could burst with pride at his new found enthusiasm for going on a Wednesday.

He starts planning from the week beforehand and now has a variety of places where he will go and eat, and it’s all totally his choice.

This week is Bills Restaurant.

Tonight is a later evening than usual and a predominantly adult environment. Dylan’s on his best behaviour and ensuring that after taking a huge glug of his coke he ensures he puts his hand over his mouth before releasing his immense belch.

Every. Single. Time.

So glad he has manners 🙂