Posted on by bereavedandbeingasingleparent · 52 Comments

It is still runny

Over the last couple of days our son has been even more disillusioned with school. School is still not being proactive which any support – he has to ask for help rather than have it incorporated into the teaching program. Some of the kids poke fun at him when he has to out his hand up for help. To make things worse now when he does ask for help the Teaching Assistant now ends the help by saying “now I’ve helped you what do you say”. Every single time our son has to thank the Teaching Assistant. Now I try to stress the importance of being polite but in this case….. From the sound of it the other kids are not asked to say thank you when they put their hand up for help – just our son when he needs some text reading out. Why single out the dyslexic child. Surely the Teaching Assistant can see that the kids poke even more fun when he says thank you.

Maybe it just my tired state anyway…

Last night to try and cheer him up I asked what might help make him happier. The answer – Toffee Apples.

So we set off to the local shop to find they had sold out. Only one option – make them myself – surely it can’t be that difficult. Silly old sausage.

First attempt (following recipe to the letter) would not set.

Next attempt – increase the temperature – even more runny, will not set.

Another attempt – decrease the temperature – annoyingly still as runny, will not set.

Yet another attempt – try a different recipe – same runny result.

Starting to lose patience attempt – increase amount of syrup – no improvement

Really annoyed attempt – increase amount of sugar – no change

The I’ve been doing this for hours now and son has gone to bed attempt – to tired to remember what I tried – this time I arc welded the ingredients to the pan.

*************

So my son set off to school now determined not to ask for any help at all. But at least he has the prospect of toffee apples. I promised him that I was heading to the city and would go round every single shop until I found them.

Posted on by bereavedandbeingasingleparent · 70 Comments

Probably

One of the most frustrating thing about autism is that nothing seems to be certain. You can say the same about Dyslexia, Dyspraxia and ADHD. The stock reply to questions seems to be “probably”. It feels a bit like that old beer advert “Carlsberg, probably the best lager in the world ”

  • Is Autism hereditary – probably
  • Are environmental impacts associated with Autism – probably
  • Are Autism and Dyspraxia linked – probably
  • Will the behavioural aspects of Aspergers become more pronounced as he gets older – probably
  • Is his Dyslexia linked to his Aspergers – probably
  • Is ADHD linked to Aspergers – probably
  • Will a coach or therapist help with Autism – probably
  • Is a main stream education the best option – probably
  • Could going to a special school help – probably
  • Would home education be more suited – probably
  • Will the loss of his mum have a long term impact on his Aspergers – probably
  • Will he get any specialist bereavement counselling – probably
  • Would educational psychologist be able to provide a tailored educational programme for our son – probably
  • Will an educational psychologist assess our son – probably
  • Could medication help – probably
  • Could medication make it worse – probably
  • Is Aspergers and Sleep Disorders linked – probably
  • Could the use of a reading Scanning pen help with his Dyslexia – probably
  • Could Occupational Therapy help with Dyslexia – probably
  • Could Speech Therapy help with Dyslexia – probably
  • Could the use of a reading scanning pen hinder any potential reading improvements – probably
  • Will the use of coloured lenses help with Dyslexia – probably
  • Have we now ruled out that coloured lenses will not help – probably
  • Will my son get any additional help during his secondary school life – probably
  • Are we trying every available route to try and unlock his full potential- probably

Probably, probably, probably….

Apart from the definite diagnosis everything else seems to have been on a probably basis. That’s frustrating for a parent as all you want to do is try and find the best course of action for your child. It’s more frustrating for the child as he or she tries to come to terms with life and the future.

But one thing is not probably, it’s not maybe, it’s definitely. When your child has had a bad day at school. When the parent is crying inside with the frustration of not being able to take your child’s sadness and anxiety away. When you need a lift.

The pets never let you down. They are our Ghostbusters our Captain America. Guaranteed to save the day and lift the spirits. They don’t need a proton pack or a shield. Just a few cushions will do the job. What a hero. Son and Dad happy again – probably for the rest of the day.

Posted on by bereavedandbeingasingleparent · 35 Comments

Words of Wisdom

“You’re only given a spark of madness. You mustn’t lose it” – Robin Williams

“For all autistic people it mustn’t any longer be about what we can’t do, it’s got to be about what we can do” – Chris Packham

“You’re an interesting species. An interesting mix. You’re capable of such beautiful dreams, and such horrible nightmares. You feel so lost, so cut off, so alone, only you’re not. See, in all our searching, the only thing we’ve found that makes the emptiness bearable, is each other” – Carl Sagan

“When we meet real tragedy in life, we can react in two ways – either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength” – Dalai Lama

“It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village” – Elaine Hall

“It’s so much darker when a light goes out than it would have been if it had never shone” – John Steinbeck

“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim“- Vicki Harrison

“You are allowed to feel messed up and inside out. It doesn’t mean you’re defective – it just means you’re human.” – David Mitchell

“We’re out of our comfort zones with depression. I certainly was and whenever I have bad days now I speak to someone to get it off my chest. I have no shame telling that and that’s why I’m here today” – Ricky Hatton

“Once you choose hope, anything is possible.“ – Christopher Reeve

“I didn’t succeed despite my dyslexia, but because of it. It wasn’t my deficit, but my advantage. Although there are neurological trade-offs that require that I work creatively/smarter in reading, writing and speaking. I would never wish to be any other way than my awesome self” – Scott Sonnon (World Champion in Martial Arts)

“There is a time to live, a time to die, a time to laugh, and at no time are the three of them very far apart” – Spike Milligan

“Life is too short to do the things you don’t love doing” – Bruce Dickinson

“When you change the way you look at things, the things you look at change” – Wayne Dyer

“A dog is the only thing on earth that loves you more than he loves himself.” – Josh Billings

“Cats are smarter than dogs. You can’t get eight cats to pull a sled through snow” – Jeff Valdez

“The inner machinations of my mind are an enigma” – Patrick from Spongebob

“Bums to big” – Our son on why the Dodo couldn’t fly. Probably explains why I can’t fly as well.

Posted on by bereavedandbeingasingleparent · 22 Comments

Aspergers and Dyslexia- have you considered moving

Our son was diagnosed with Aspergers a few years ago. He is also dyslexic. It was a nightmare of a bureaucratic process. Three years of road blocks and dead ends. We were lucky, many families don’t get there. I assumed that the support and help my son needs to develop to his full potential would then follow. Sadly that was wrong.

In a world of cuts and austerity many key services have been cut. Our Local Authority has cut back Autism Support Services. It provides no specialist educational Dyslexia support. As a result many children like my son are provided minimal additional support.

With a new School rapidly approaching I tried again to gain support. Luckily our wonderful NHS has now started trying to help my son better understand what ‘living with Aspergers’ means. However no educational support is available. They won’t even do an educational assessment of his dyslexia to see what are the best strategies his new school can adopt. It’s left to the parents to take this forward. Unfortunately my son has a rather limited parent in this field.

We met up with his new school and they suggested a novel approach to the issue. Some other parts of England still provide Dyslexia and Aspergers support to children. The school asked if we had considered moving out of the area. My son immediately responded by saying he was really happy living here but if he had to move would it be ok if we moved to Canada.