Living with Autism

In the past, this blog has featured a few stories on how not to do christmas when you have an Autistic Family. After 2007 and 2009 we eventually we learned to go our own way. We buy nice food, a lot of wine and plan our day around our kids. Presents that they have specifically requested arrive in a neutral space. In Liam's case they are snatched out of the stockings and brought upstairs to be watched. For Grace, it can take up to a week for the "new" to be absorbed into her existing collection, a bit like when you have to leave a goldfish in his bag inside a new tank until the temperature evens out. By the time of writing, one Sesame Street Story Book has made it upstairs into her bedroom. The remaining 4 are still in the kitchen, acclimatising. Only one has the celophane unwrapped.

Everything about our day, like our lives is arranged around what makes our kids happy and comfortable. No forced traditions, no expectations, no disappointments.

The only problem is you can …

I've been meaning to write about my son’s current phase of behaviour for quite a while. But I guess I was waiting until the storm had passed, that we had found a way to resolve it, and I could write an uplifting post full of practical advice and solutions.

But something else has prompted me to come clean and talk about what we are going through. I had a conversation with someone yesterday where I was asked what I thought of an event on the weekend, and in a moment of weakness I answered:

"To Be Honest, for us it was as much about the night off in a hotel, our son has been very difficult lately and we needed the respite.

and this person reprimanded me firmly saying "Oh I would never typify my son in that language"

I was shocked, and replied "I'm not being negative about my son, but he can be so challenging at times and it is exhausting.

She went on to say something about knowing its hard, but it is hard for all of us and not to think of myself as a victim. (I…

Smumpreneur:Alternative forms: Snompreneur (North American)Etymology: Blend of  special needs mum and entrepreneurNoun: smumpreneur (plural smumpreneurs)(informal) A mother of a special needs child or children, who works as a businessentrepreneur in addition to (and often inspired by) familycommitments
As you might have read on this blog, about 3 years ago I created and launched something called The Grace App, which is a picture communication system I created with, and for, my daughter Grace, who has autism and severely delayed speech. I did it with a really talented App developing wizard called Steve Troughton-Smith, who you may also have read about here.
And totally without planning it, I went from staying at home for the last ten years as a special needs mum to having my own product, my own business and the chance to get out of the house once in a while and get paid to talk. (my husband pays me not to talk)

Todo this I need props,  a lot of props, all of which I used to carry around i…

Those of you who have followed this blog over the years may know that we have had from time to time; problems with Liam's behaviour.
When he is in the "red zone" which is what I call it when he is beyond negotiation, he will bite his hands, try to push or grab me or his father (or staff at school) and he really sets out to break stuff. A lot of stuff. I genuinely lost count of the number of mini-dvd players we have had over the years. I think we replaced 3 or 4 laptop keyboards, a memorable process which involved talking to the lovely Salif or Anjoli in Mumbai and pretending that the "enter" key wasn't working, until they agreed to send me a new one. I eventually switched from Dell to Samsung Netbooks and plug in keyboards from the supermarket; much easier to replace!

Now we have iPads and iPhones, the potential for expensive repairs and replacements has increased. And before you judge me, keep in mind that these devices serve an important social and thera…

Claire - By Gabrielle Clark. Twin sister of Claire, little sister of Michelle and me.






Generous, big hearted, loyal and loving.

Born two minutes after me, I never let Claire forget I was the big sister.

As little girls, known as “the twins” we were told apart by wearing a ‘C’ for Claire and a ‘G’ for Gabrielle on our jumpers. We looked alike and sounded the same. Dad even put large orange homemade C and G stickers on our Rosebank stack hats.

As toddlers, we shared our own “twinny” language that no one else understood.
I remember Michelle and Lisa putting us in separate rooms to test our “Twin ESP” – they’d tickle one of our feet and the other’s toes would curl up. We never lost that connection.

We grew up riding horses, building stuff with Dad and riding bikes. We started with our matching BMXs and later had matching racing bikes. We still had our C and G Stackhats and to our disappointment, Dad added orange reflective safety flags. Fortunately they broke not long after.

We were outd…

My youngest sister died last month very suddenly. We are all still trying to come to terms with it. I am not telling you because I want to hear your condolences or be hugged in public. I am telling you because if I don't say anything, you might just say the wrong thing and feel bad about it later.

3 very good friends sent flowers and wine - that was perfect. Some other good friends are leaving me alone while offering a shoulder when I want it, I appreciate their kindness. The discreet cards are nice too.

This is a time for family and privacy. So thanks in advance for respecting that. One of my other sisters wrote a beautiful and very funny celebration of her life and I will post that up soon. All I will say is that Claire was always so proud of her sisters and shared and supported our achievements liberally. This was one of her favourite most played songs on her iTunes account. We played it at her service.

xx

Grace App Developer and all round iWizard Steve Troughton-Smith caught a bus up to Belfast last night, to queue overnight for the new iPhone 5:


Yep, that's a line of people snaking around the gallery level of a shopping centre waiting for the shop to open.



He got his "Golden" (okay white) ticket, And he got his iPhone 5, one of the first on the island of Ireland.



Cahir was also on a bus in the North this morning, off to Little Angels School, in Letterkenny.

Where he was perfectly happy with his iPhone 3Gs
I will let Cahir's Mammy tell you why:
You may wonder what use is a iPhone to a child with special needs? One that is only 5 years old, who doesn’t speak and relies on other people for all of his daily tasks from washing to dressing to choosing what to eat and when to eat it. Well that was my son Cahir last January.
I chose what Cahir ate, when he ate, what he played with, what he liked and didn’t like.  Cahir has Autism and is non-verbal. He has never spoken so I used t…