A rant…

Sometimes it just seems impossible to keep a brave face on things.

We are having no success in finding a new base for Zach and I am having to explain over and over again to very well meaning people about Zach’s autism and needs.

Explaining this is never easy, it sometimes feel like I am beating myself up every time I have to do it, especially on a day when I am having to explain multiple times.

I don’t expect ‘Joe Average’ to have any in depth knowledge of autism, the autistic spectrum and the fact that people with autism maybe are or maybe aren’t also physically disabled, but Zach is definitely physically 100 % able and stairs are definitely not a problem…that seems to surprise some people.

Disability is a word which has so many different connotations for so many people, mostly people are thinking of somebody in a wheelchair and probably look far more sympathetically on that person than they do to the person who is struggling with sensory overload and trying to make themselves understood loudly!

Then there is the word sympathy. Sympathy has its place but that place isn’t making me feel as though my life has been ruined because my son has autism. Empathy is much more appreciated and practical help! It is far easier to be sympathetic as that just involves making what are considered to be the right noises and having people tell you how wonderful you are because you evidently love your child and don’t want to send them hundreds of miles away to a residential placement….’it would mean you could get your life back’!

Well he is my life! He is my career and if he is happy we are happy! I don’t want to be told how wonderful I am because I love my son! He is my son, it would surely be far more of a surprise if I didn’t love him!!

Now I’m not saying I NEVER want to be told I am wonderful (John Saysell, please take note!) but I just don’t want it to always be in the context that I am wonderful for being a mother!

I am lucky to have Zach, I adore him and love him like most mothers, I don’t want to be constantly talking about the bad bits, I want to tell everyone about the good bits!

Sorry for the rant, this morning has been particularly challenging with phone calls to people who through no fault of their own have little or no experience with autism….

Tomorrow evening I am going to have my first experience of laughing yoga and boy! do I need it….however when I say my first experience it isn’t true, I’m always the giggler at the back of the room!

 

No Email Ping-Pong here!

I wonder if the saying ‘watch pot never boils’ has a similar 21st century saying…something like ‘glued to your outlook, inbox never pings’….or something 😮

We have just 48 days left in our current hub for thezachproject and my glass half full feeling this evening is that we aren’t any closer to finding a new place.

It isn’t through lack of trying I am emailing madly, phoning and knocking on doors but the old…you never phone, never call etc  applies.

I have asked for advice from some people who have a lot of savvy with this kind of thing and I am following there advice but my goodness why can’t anyone pick up their telephone, open their door or ping a blooming email my way!

One of the local County Councillors has really engaged and I met with him on Monday, along with Diana Eden another parent. We hope that Sam will be able to share the hub with Zach with his own Beam team. Dr Andrew Stevenson was very generous with his time and keen to listen to what we had to say, and he wants to help us. On Friday I am meeting with our MP who I hope will also be on board.

Today I spoke with the local paper about our situation, the reporter seemed quite insightful, I hope it is a positive article which garners some interest. He did ask me to let him know if we get any response….it will be in your Hertfordshire Mercury tomorrow! We were  asked for some photographs, simple for Zach, not so simple for John and I. I searched my computer for a family photo, not a single one and John then searched his and found one of the three of us on a carousel at Butlins, I wasn’t really sure that was what the Mercury were after, I did have a few of Zach and I wearing bizarre head gear over Christmas,  maybe not quite right for this.

 

I visited the Community Voluntary Service which is based in Stanstead Abbots and met with Fay Turner who is the services manager there, she is a lovely lady full of ideas. We chatted for a long time and she mentioned an empty space in central Hertford which sounded very interesting. It has been empty for some years apparently and belongs to East Herts County Council, I have contacted them…still no ping!

Last week I was completely sold on the idea that we buy the biggest portacabin there is and then we have a permanent base which is ours….however where are we going to put that massive portacabin?! Then John suggested we purchase a barge…..I think we were losing the plot slightly by that time. Maybe if we had a space the portacabin could work, it would be a good starting point until the project grew and we needed a bigger space.

People have been very kind and thoughtful making suggestions about places we can look and people we can approach but one of the absolute requirements is that we are within walking distance of a mainline station so members of the team can get here, and the other is that we are close to a community so that it can be accessed. Both these requirements immediately make the building/space we are looking for worth a lot of money!

I have emailed and phoned Commercial Estate Agents, the same one a number of times about different properties….PAUL WALLACE but it always goes to answer phone and I have not had a single reply to my emails.

Today I emailed various Directors, Managers and Commissioners from Adult Care, Zach’s own social work team and County Councillors and District Councillors and our MP to invite them to an open morning at thezachproject. I do think that people don’t understand what we need to re-locate which is actually just a physical space, close to railway, community with WC and kitchen amenities.

I don’t think the people who approved funding for thezachproject fully understand what it is we are doing so I have invited them all to come see for themselves. Still no pings! Cormac the Manager of Beam ABA Services London and Mary who is Zach’s programme supervisor have agreed to come along and talk to the powers that be about why thezachproject is working and what exactly it is that they do.

When John and I were at Scott House on Sunday afternoon having a tidy up and trying to find stuff we could get rid of I thought about all the hours of work, careful thought and planning we put into this wonderful space which Mudlarks gave us and on the one hand it makes me sad that we will soon be dismantling all we have done but on the other we have proved that thezachproject is working, that Zach is learning and accessing the community.

Please do let me know if you hear of anywhere that you think maybe suitable, and if you lie awake for hours at night use that time wisely and try to solve our problem please….is it just me that does that?

Any suggestions, ideas, thoughts will be much appreciated. 🙂