Bank Holiday (?) and “Bobby’s story” from @handmchallenge #ThisIsAutism

By | April 18, 2014

I guess the Bank Holiday today means different things to different people: for our (noisy) next door neighbours it’s barbecue time, with children jumping and shrieking on their trampoline, shouting at anything and everything; for others, it’s a trip to a DIY store for bits and pieces and for some, it’s a road trip to the beach.

For us, it’s “business as usual”, routines, anxieties and calming mechanisms. We did go out visiting and stopped off for a costa-to-go on the way back, there was a religious ceremony at the village centre which was heavily populated and the coffee shop itself was absolutely heaving. We weren’t going to stop in there anyway but the noticeable cringing of both T and D made it definite that we wouldn’t.

All very glad to be home and the rest of the day has been thankfully calm (at least on our side of the fence).

One tool that both T and D find very useful from both a calming and an educational point of view is their iPads. D in particular will happily sit in her buggy, tap-tap-tapping away, oblivious to the hustle and bustle around her. I blogged about this here.

Hearts and Minds (on twitter @handmchallenge) operate a wonderful scheme where the collection of mobile phones can be exchanged for an ipad, providing a much-needed communication, calming and educational tool to children with autism.

Cheryl has written tonight’s This Is Autism post about her son, Bobby and how Hearts and Minds have helped and continue to do so.

Bobby’s story

“Living with autism is difficult to describe. I often see reality show contestants talk say all the usual clichés – it’s been a rollercoaster, I have been on a journey, I found myself. I find all those clichés actually mean something to me and my family. Every day brings its own struggles and rewards.

7 years ago I gave birth to a beautiful baby boy with blond curls and blue eyes. He looked perfect in every way, passed all his health tests and all was good. But from the moment he was born he was different. Here was this gorgeous child who wouldn’t sleep and wanted to be fed constantly. After spending three weeks in hospital suffering from exhaustion I felt as though I was a bad mother who didn’t know what she was doing, I just couldn’t get it right. I blamed myself for his sleep and feed issues. When I asked the doctors and the nurses I would be fobbed off. So off home I toddled with new born in tow ready to face whatever came my way.

Still 6 months later, my boy still wasn’t sleeping and wanted to be fed constantly, probably getting a maximum of 3 hours sleep on a good night, he still had made no effort to try and roll onto his belly or to crawl. That’s when the questions in my head started to magnify. I put it down to lack of sleep and overthinking. When the health visitor appeared I would ask why my child is so different, why wasn’t I coping, why couldn’t I get him to sleep? Once again blaming myself as from the way the health visitor looked and spoke
to me it obviously was.

The lack of sleep was starting to take a toll on my relationship with my partner and my other two children. They couldn’t understand what was up with me or Bobby. As Bobby got older still his developmental milestones were not forthcoming. He was one and still was not crawling.

It took 6 months to convince my GP that I needed to see a paediatrician. It was such a relief when finally meeting her and I was able to voice my concerns while she observed my son lining up bricks in an orderly fashion. I told her my concerns were Autism and she told me my concerns were valid.

That was the moment it was confirmed for me that all the thoughts going through my head were right.

Even though I had it confirmed I still then had to go through nearly two years of tests to get an official diagnosis of Classic Autism and I was one of the lucky ones. At the age of three he had an early diagnosis even though he could have had it confirmed so much earlier and then strategies could have been put in place to help him develop.

Today Bobby is 7 years of age, he still has no understandable language, he still smears his faeces across my walls, and he still has meltdowns in supermarkets. It is the judgemental looks of other shoppers that can really ruin my day or the snide comments about his bad behaviour. I have to calmly inform people of his autism and many people think it’s an excuse. They can’t understand that the sound of the freezers might hurt his ears or the lights might be too bright or simply that it is all too much of a sensory overload.

Bobby can spend hours trying to rip his skin of himself as it hurts him, biting into his hand so hard he will probably have permanent scarring. He can often try to hurt others and will feel no empathy for the other person no matter how hard they cry.

Saying all that, Bobby can be the most loving, joyful child to have around.

With services being cut back and help depleting once you have the diagnosis I needed to turn to someone. I needed to pick my battles. I decided to go for speech. That’s when I approached hearts and minds and looked into their iPad scheme. I managed to collect 165 phones within 6 weeks and received an iPad within a couple of weeks.

When I first received Bobby’s iPad I was sceptical to it working. After much practice Bobby was finally able to communicate with his family and the outside world. He could tell me when he wanted his dinner or how he felt. The iPad never leaves his side now.

With Bobby being able to communicate, it changed the whole dynamics of my family. The violent episodes are getting less, he has stopped harming his big sister and the home is generally calmer. I picked my battle very carefully and won thanks to hearts and minds. I have my family back and we work as a unit once again.

Bobby is more willing to go on day trips with us as he can tell us if he feels anxious or scared, or if it is simply too much for him. Hearts and minds are always on the other end of the phone if I have a problem or some advice. If I need help with his school, therapists, or benefits then I can access their advocacy service any time. This is invaluable to me as there is always a problem.

Thanks to hearts and minds I have my life back and feel that I am not going through this on my own. Living with autism would be so difficult without them.

As for Bobby we take each day as it comes, facing each challenge head on but now we are positive and our lives wouldn’t be the same without him. He is centre for my family and I feel proud of him every single day as he makes a small step in his achievements and all that he has to overcome.

Autism isn’t a journey that I planned but I sure do love the tour guide.”

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(I love the last sentence of Cheryl’s post, I have a similar phrase on a little wooden sign by our front door, picture above).

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2 Comments

rebecca beesley on 1st May 2014 at 1:46 pm.

What a heartwarming story – That is incredible about the ipad bringing so much hope to your family. x

Reply

Jeannette on 11th May 2014 at 3:18 pm.

It was just lovely to read about Bobby, wasn’t it 🙂

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