Sunday, 30 May 2010

SNAP-tastic!


After my rather melacholy post last time I promised J's Dad that this one would be much more positive... and it is.

When J was diagnosed there was a lady in attendance who is manager of the local special needs centre. Hilary set up SNAP with other parents in the 1990s when she realised how woefully inadequate the support services for parents of children with special needs were. Over the years SNAP has expanded and grown and now has it's own premises in the grounds of the old Warley Hospital.  It is well used by families all over south Essex and runs a variety of courses and groups for parents and children. One of these groups is SNAPTASTIC a "stay and play" group aimed at children 5-13. At £3.50 a session it is very affordable and once the Disability Living Allowance has been agreed (not holding my breath on that one) will be a regular activity for J.
The session is based around fun and support for both children and parents, the centre is fully open and there are plenty of activities for the children. Upstairs in the meeting room there is seating, biscuits and tea or coffee for the parents. While the parents drink tea and chat the parent advisors circulate and are ready to offer support and advice as needed. Meanwhile downstairs in the playroom an army of staff and volunteers play with the children and supervise the SNAPTASTIC session.
J has attended only one session so far as they are not weekly and immedietly made a friend. A is 7 like J and also like J is on the autistic spectrum. J and A met at the door of the session and seemingly recognised kindred spirits in each other. Once the door to the playroom was opened they were off to run, jump, dress up in the costumes and have fun. The supervisors and volunteers had a hard job just persuading them both to stop and have a drink as the sweat poured off them both. Everyone commented on the fact that they seemed to be long lost friends who had known each other all their lives! It was great to see and J did not look for me in a whole hour. While J was playing hard downstairs I was able to wander upstairs to drink coffee and talk with other parents including A's Mum. It was so helpful to do this as I recognised so many similar problems between J and some of the other children. In many ways it was a bittersweet experience, J had so much fun and that was wonderful to see, but in seeing him enjoying the session I also recognised the fact that it was with these special children that J fitted in perfectly well - a confirmation of the diagnosis if you like.
So June approaches and J has been booked in for more SNAPTASTIC sessions and also the drama group which starts in June too. I have booked myself onto a series of four workshops looking at various aspects of daily living - sleeping, eating, dressing and toiletting all focused on the needs of the school age child on the autistic spectrum. This means that there will be times when we not only attend the centre twice in one week but on occasions twice in one day.... I can't wait.

Saturday, 22 May 2010

Sometimes

Sometimes I find J hard work

Sometimes I get frustrated and cross with him and then I feel guilty.

Sometimes I get fed up with saying “Sorry” to all and sundry for his poor behaviour and lack of impulse control

Sometimes I would give anything for the ASD and ADHD to go away so that people could see the lovely little boy underneath it all.

Sometimes I want to scream about invisible disabilities - a child in a wheelchair is clearly disabled and allowances are (well should be) made. Nobody understands about less visible challenges to a child's actions and behaviour or even considers them.

Sometimes I want to scream at the smug parents with their well behaved children who watch J with an irritated eye.

Sometimes I feel frustrated that the rest of the world does not understand.

Sometimes I wish J came with a volume control

Sometimes I feel I am not up to the job of parenting J and wonder if he would be different with a more competent and organized Mum.

Sometimes the stress finds me in this self pitying mood which needs to be kicked into touch.

But thankfully this IS only “Sometimes”. Thankfully MOST of the time I am more positive than this.

Unfortunately this is not one of those times.

Monday, 3 May 2010

Autism and Aspergers Myths

1. Children with Autism never make eye contact?
FALSE

2. Inside an Autistic child is a genius?
FALSE Most children with Austim will exhibit significant delays in some areas of mental processing and a percentage exhibit above normal intelligence.

3. Autistic children do not talk?
FALSE - the vast majority have language development.

4. Children with Autism can't show affection?
FALSE, This can be difficult for most Autistic children but not all.

5. Autism can be outgrown?
FALSE. Autism is a lifelong condition but with help Autistic people can lead productive and happy lives.

6. Children with Autism cannot learn?
FALSE. It can just take a little time to figure out the best way to teach Autistic children.

7. Autism is rare?
FALSE

8. Asperger Syndrome is caused by poor parenting?
FALSE. Asperger syndrome is believed to be caused by a Genetic Componet.

9. People with Asperger Syndrome lack imagination?
FALSE. People with Asperger Syndrome typically possess vivid, creative and unique imaginations just look at the famous people with the condition. example: Satoshi Tajiri the Creator of POKEMON or even Hans Christian Anderson a famous Author of children's stories such as 'The Little Mermaid'

10. Autistic people are all alike?
FALSE. Everyone is different but there are some common problems with things such as difficulty with social communications.

11. Autistic people don't build relationships?
FALSE. Ok it's unlikely an Autistic child might be a very popular social person but it is very likely they will have a solid relationships with people with shared intrests. Plenty of Autistic people who marry will have good solid relationships.

12. Autistic people are a danger to society?
FALSE. Autistic people are not dangerous but some may exhibit violent behaviors but these are almost always caused by frustration, physical or sensory overload and its very rare they act violently out of malice.

FACTS

1 in 150 individuals has an Autism Spectrum Disorder
Autism is a form of autistic spectrum disorder or ASD. Other forms of ASD include Asperger syndrome, Childhood Disintegrative Disorder and Pervasive Developmental Disorder.

80% of all individuals with Autism learn to talk.

Each person with autism is a unique individual with special talents and gifts.

Children and adults with autistic spectrum disorders have difficulties with everyday social interaction.

People with Autism are often keen to make friends but due to their disability find this difficult. Their ability to develop friendships is generally limited as is their capacity to understand other people emotional expression.

Autism is a lifelong developmental disability with NO cure.

Some people with autistic spectrum disorders have accompanying learning disabilities but everyone with the condition shares a difficulty in making sense of the world

People with Autism who have an extraordinary talent are referred to as 'Autistic Savants',
only about 0.06% of Autistic people are 'Autistic Savants'.

Many thanks to Cheryl Ellison for the above.