Autism News - December 2003

Dear WSGA,

My sister got hold of a WSGA newsletter for us from a colleague at work and we soon became members. However, we didn't attend anything they were offering (basically we were being ignorant - thinking it wasn't for us), but we did manage to get hold of Keith Sorrell's "Airedale Recycled Computers" address.

We soon set out to purchase a computer from him and received a fantastic deal on the equipment. What we didn't know was that he had an Autistic son the same age as ours.

It was absolutely brilliant to talk to him about things - we were no longer alone! We were at his premises for well over an hour just talking about Autism and our sons. I (mum) could have stayed all day.

We hadn't done anything until meeting Keith. He gave us advice on help and various other things. Basically he made us think, get our heads out of the sand and gave us back the confidence we'd lost.

We couldn't come to terms with the diagnosis of our son, or read any of the information we were supplied with, but now, thanks to Keith, we see a light at the end of the tunnel.

We have now started to attend the monthly meeting (our third one coming up) and we are signed up for the Earlybird Plus course which Keith highly recommended.

Now to top it all our son has just won a computer from Keith. It makes it all the more special because our son couldn't grip a pencil and would only scribble because he lacked confidence. It was the first recognisable drawing he'd done for us. It wasn't much, just a simple drawing, but it was out of this world, I was so proud of him. To be rewarded by winning a computer makes it even more special.

We would like to thank Mr Keith Sorrell for the advice, help, kind words, useful information and the computer.

Lesley Mills-Atkinson, Nigel Atkinson & Tyler

Information

For the first time in the history of this newsletter there is an advertisement, quite a large one actually from Airedale Computer Recycling.

This is the company that offered the three computers as prizes in the recent colouring competition in this very journal. In fact, when the entries had arrived, their fine offer became even more generous when all nine entrants were awarded a refurbished computer system each!

Local M.P. Yvette Cooper judged this event and decided upon an overall winner. Eleven years old Cathryn Baxter of Dewsbury will therefore receive the first prize, a refurbished Pentium Multimedia system, complete with internet access.

I know from correspondence received how grateful these recipients are, so please join me in thanking the company and Mr Keith Sorrell for their generosity.

Many Thanks Keith.

Runners-up were:

Most women become mothers by accident – some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers of handicapped children are chosen?

Somehow I visualise God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth: son; patron saint, Matthew. Forest, Marjorie; daughter; patron saint, Cecilia. Rudledge, Carrie: twins; patron saint… give her Gerard. He’s used to profanity."

Finally, He passes a name to an angel and smiles. "Give her a blind child". The angel is curious. "Why this one, God? She’s so happy". "Exactly", says God. "Could I give a child with a handicap to a mother who does not know laughter? That would be cruel". "But has she patience?" asks the angel. "I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it" says God. "But Lord" says the angel, "I don’t think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness". At this the angel gasps. "Selfishness! Is that a virtue?" God nods. "If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect.

She doesn’t realise it yet but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly all the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side." "And what about her patron saint?" asks the angel, pen poised in mid-air. God smiles. "A mirror will suffice."

May 11 1980 Forever Erma – By the late Erma Bombeck

Reprinted with permission of The Aaron Priest Literary Agency

From A Parent

Today was an early start, as I had to leave the house at 6.50 am. At least I had some company from my son, who was very impressed that he was not sent back to his room but allowed to shadow me all morning.

The trains were all on time and I got to Nottingham at 9.40 am, to start at 10 am. I had been given directions to the building and got there really quickly. When I arrived I had a lovely warm drink to thaw me out before going into the room to commence work. All the time, I was introduced as "the lady from Yorkshire", as everyone found this amazing. (I was going for an introduction to the Parent-to-Parent line volunteers and they only ever have people from Nottingham applying for the position).

We watched a short video about the different aspects of Autism and the different levels and ages, all of which rang bells, as it would with any parent. It was interesting to see the different age ranges and different levels. We were introduced to the volunteer staff at Nottingham who were all welcoming. We had coffee and biscuits – a treat, as I didn’t have to stop and think about which ingredients were in them. I could just enjoy.

We all talked through the various qualities you would need to be a volunteer. It seemed a daunting task. Then it was lunchtime and the sandwiches were lovely. We met people who have already been volunteers and have lots of experience to share. They talked about how they answer questions and how they feel about their job. They also talked about how to deal with challenging calls. These calls can leave volunteers feeling stressed and afterwards they too may want to ring the parent-to-parent support line!

This support line is there for you – the parents and carers of children with autism. We all have bad days, be it from your initial diagnosis through to times when you just feel like hanging your child out of the window by his or her ankles. This line gives you someone to talk to ‘who has been there’. These people know what you are going through and can sometimes recommend other people who can help. The number is free. You ring up, leave a message and someone will get back to you. Give it a try the next time you are feeling stressed. It may help..

An ADHD child should sit in the classroom where there are fewest distractions

(i.e. near the teacher, away from windows or doors).

When doing desk work, only keep things on the desk which are relevant to the task in hand. Everything else should be put away.

Divide and shorten assignments with rewards in between. Long sessions of desk work are difficult for these children and should be broken up if possible by other activities (physical?).

Try to attract the child’s eyes and ears to the teacher all the time. Make sure the child is paying attention and encourage him to write notes. Repeating information helps him understand to learn.

Provide a clear structure and daily routine. ADHD children cannot handle chaos.

Explain rules clearly with consequences of breaking those rules spelled out.

Insist that tasks are finished. Set time limits and ensure that the child does not stop until the task is properly completed.

Find and provide something of special interest to the ADHD child and encourage him to work on it.

See what the child’s length of attention is and aim to develop it a little, until a target is reached.

If the child is on medication, monitor the child to ensure that the dosage is being taken correctly and is still effective. Do speak to the parents or a specialist if you have any concerns about dosage or effectiveness.

Plan instruction bearing in mind that the child’s attention span is least good before lunch and at the end of the afternoon.

Reward the child while he is doing a task and try to ignore bad behaviour by attending to children who behave appropriately.

Try to report each week to the parents of the child trying to indicate achievements in behaviour and work, as well as shortcomings.

Try and work out which circumstances lead to the child being more or less attentive. Make adjustments accordingly.

When teaching or giving instructions, say it, and write it.

ADHD children often respond positively to computerised instruction. Where they can set their own pace. Animation, colour and graphics can all be helpful for these children.

(Supplied by West Yorks ADHD Support Group)

From John

With this issue of our newsletter is a fine and possibly useful NAS leaflet promoting their "Parent to Parent" scheme. For this we thank Jeanette Crawford who so kindly provided them all to us. If you require further copies please ask Norma or myself as we will probably have some spare for you.

This seems to me to be a super scheme. On the face of which, it seems to me to be one of the best notions the NAS has ever hatched. Our family would certainly have used this service a few years ago around the time of diagnosis – a lot!

Most of the above is conjecture, I must admit to little or no actual knowledge of the scheme. What I really wish to discuss is however, partially related. Notice both above and in my previous writing that when I refer to our Support Group I use terms similar to "us" or "ours", but here the NAS is not addressed in such familiar terms.

We are all, I hope members of our Support Group, but I bet few of us are NAS members. Ten years ago on diagnosis we joined the NAS, but after a couple of years allowed our membership to lapse, partly through inertia, but mainly through our perception that their telephone helpline, while well meaning was of little practical assistance. Also our possibly mistaken conclusion drawn from their magazines that the organisation was over occupied with NAS schools and residences which really only catered for a few hundred at most of people with autism when there are possibly many tens of thousands with autism in the U.K.

But this was a long time ago, whether we were mistaken or not, my perception now is that things have changed – a lot. Instances being the excellent "EarlyBird" scheme and the earlier "Parent to Parent" network, other examples doubtless exist. On our personal level we are considering re-joining our only national organisation that could represent, lobby and campaign for services, provision and change.

That’s covered our personal angle, but how about our group? Would it not now make perfect sense to follow our good friends at Huddersfield Support Group and also affiliate our group to our national society? I’m unaware of any good reasons why not, they don’t report any loss of control over their assets or affairs when asked.

Your views please.

jrc

From Fiona

Fiona sent in an article from "Woman" recently which pointed out that more than two million parents in the UK have children with speech and language difficulties. Often, they’re prevented from getting the help they need for their children because of a lack of understanding, awareness and information on the causes of, and treatment for, these disabilities.

Jane Nolan was one such parent. Her son Thomas was diagnosed with speech and language problems at the age of two. "One of the worst things was not knowing who to turn to for help" says Jane. "I was just told he had a non-specific speech and language problem. His pronunciation was poor and he couldn’t find the words to communicate what he wanted to say. He also couldn’t understand what people said to him. Being unable to communicate was very frustrating for him and us."

Thomas received speech therapy at nursery and primary school but Jane was constantly worried. "The therapy was paid for out of school funds and I was afraid the funds would run out and Thomas would stop getting help." Then a friend told Jane about the charities Afasic and ICAN, which help children and families with speech and language difficulties. "The charities helped us and Thomas was soon assessed as having ‘special educational needs’, which guarantees he’ll get all the help he needs at school every day. I could stop worrying."

Thomas, now 13, has been diagnosed with Asperger’s Syndrome (a mild form of autism) but he’s doing well at mainstream school. "He still has a speech therapist and attends special classes to help him socialise but he’s made massive improvements," says Jane.