Farewell Dora the Explorer

Goodbye our little furry friend

This is a beginning, not the end

Off to Hammie Heaven you go

Away from cold and rain and snow

Sunflower seeds and peanuts await

Sunshine and laughter for our very best mate

 

(with thanks to a Fab :-) Mumsnetter's son who wrote this poem about his hamster when it died)

 

RIP Dora -  a dear little hamster

J through the looking glass

From a very young age J was fascinated by his reflection in a mirror – nothing very significant in that as most children are keen to look in a mirror at themselves. However, from about the age of 3 J’s mirror gazing became slightly different and very entertaining to watch. J would stand in front of the mirror and pull a variety of facial expressions – he would even practice crying sounds while watching himself. Naturally I put all this down to his tendency to show off and perform to an audience. I even looked fondly and thought “Bless – just like his Dad” at some of the more comedic expressions and confidently predicted a love of drama.




At the age of 7 J still does this “mirror” stuff and practices a big beaming smile among other expressions. When J feels he has done something wrong or if he feels I am stressed he will gain my attention and say “look Mum” and produce the biggest most beaming-est smile possible – it lights up his whole face and includes his eyes. It is identical to the one he produces when he looks in a mirror.



Today I attended an autism workshop looking at sleep problems in school-age children on the spectrum. As part of the workshop we watched a series of short films about autistic children and the sleep issues which affect them and their families. One showed a little boy of about 9 being asked to go to bed.



“Time to go to bed Zac”



“Nooo” was the response shouted loudly by Zac all the while he walked up and down in front of a mirror pulling a variety of expressions.



“Yes – you need to put your PJ’s on”



“No – don’t want to go to bed” again said loudly but more calmly as Zac became absorbed in this mirror gazing. He pulled several expressions and watched himself closely, sometimes practicing a grimace or smile again.



For me it was a bit of a light-bulb moment and H (the speech and language specialist) said that children with Autistic Spectrum Disorder find facial expressions and the world in general very confusing. It is not unheard of for them to “practice” the expressions they see around them in front of a mirror to try and make sense of them. In this way Zac could see the facial expressions which went along with his upset feelings around going to bed.



So J has been doing this mirror practicing to some extent too and I’d had no idea that it was significant as behaviour. To be perfectly honest I just thought J was a bit of an actor – practicing his performances prior to testing them out to their fullest extent on me. I was wrong but still feel his ability to “perform” and practice these things won’t do any harm in his drama group which starts tonight.

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.

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.

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.

Conversations with my son.

Last night I had the following conversation with J who started by telling me why he didn’t want to go to school today.


“I don’t want to go to school because I don’t like assembly”

Assembly has been the topic of conversation a few times with J so I dug a little deeper.

“Why don’t you like assembly J”?

”I don’t like assembly because I am bad and I got sent to the office”

“What did you do that was bad”?

“I can’t behave myself and I am naughty”

“What did you do that was naughty”?

“I can’t behave myself”

"Yes but what exactly did you do"

"I was bad"

We went round in circles like this for a few minutes with J seemingly unable to explain what he did that was bad or naughty or misbehaving. I am always wary of putting words into J’s mouth but can quite imagine the difficulties which might occur if you sit J in a largish hall with echoing sounds perfectly designed to overhype his senses. So I asked him if sitting still was a problem and back came the affirmative. “So” I said “you don’t like sitting there and you end up getting up and fidgeting”?

“Yes” said J “and I got sent to the office and so I cried-ed”

And then came the heartbreaker

“I am a fake boy”

“What’s a fake boy J”

“It means I am no good and I am stupid”

“No you are not stupid and you are good”

“No I am a fake boy and I need to be sent back to heaven”.

Cue lots of tears


Somehow I suspect his self esteem is rock bottom and that is not good. It stands to reason that if everyone around you is sailing along and you are not, if everyone else finds life a breeze and you don’t that you might start to wonder why.

I am now on the point of wondering how I explain autistic spectrum disorder and ADHD to J.

Maybe I start with “you are special because you think differently to other children”

Or maybe I watch a bit of the "Young, Autistic and Stagestruck" series with him.

Or maybe I find a book which explains his differences in a gentle way.

Whatever the choice I eventually make the fact is that at some point I will have to have that conversation with him rather than leave him floundering and wondering why everyone else can manage X, Y or Z and he cannot.

Young, Autistic and Stagestruck!

Young, Autistic and Stagestruck is a Channel4 programme following a diverse group of youngsters with one similarity, all the children and young people taking part are on the autistic spectrum like J. As J has so recently been diagnosed I was keen to see the programme and  see what  similarities the participants had with J. 

The parallels hit me in the face immedietly the show started as we saw Mollie a little girl with a BIG personality also on the autistic spectrum. Programme One opened with Mollie and right away I saw the likeness with J, I watched knowingly as she raged "I hate you" at her Mum, I recognized the self harming (hitting herself on the head) when raging and in Programme Two watched her head bang in temper as J still does at times and heard the same "er er" noise which J makes. J's Dad was watching some 170 miles away and we rang each other during virtually every commercial break "oh my goodness" and "did you see"? The similarities between Mollie and J were amazing and for the first time I could see how and why J fitted on the autistic spectrum.

Since seeing the first programme I have joined the Facebook group dedicated to the programme and after posting on the wall about the parallels between J and Mollie was touched to receive a message from Mollie's Mum. Mollie and J are indeed very similar - like peas in a pod in some ways but also poles apart and I don't envy S (Mollie's Mum) one little bit. However, Mollie's  actions are more marked and her behaviour is far more challenging than J's. Mollie's rages can be daily and last hours or even days, J's are shortlived and he can (at the moment) be distracted (thank goodness for ADHD - even his rages are unfocused).  I was even more in awe of S when she told me her older son has cerebal palsy but understood when she said she could cope with 20 of him but only 1 of Mollie! Truely the autistic child can be a challenge.

I am so grateful to S and P (Mollie's parents) and to Mollie for agreeing to take part in this programme which is opening up to a wider audience an understanding of what parenting the autistic child can be like. The rages, the intelligence, the talents (hearing Claire sing was lovely), the kindness and gentleness of Andrew, the fierce intelligence, anger and sadness of Ben who made me laugh out loud in the first episode by saying tartly (in response to the interviewer's question "Are you autistic"?) "Of course I'm autistic, what a stupid question, we could have done this interview over the phone". Ben's intelligence masks anger and an inability to cope with social communication which makes him say "I want to die". He knows he is different and does not like it. Other children had different problems, one used to smear faeces which must be a hideous problem to deal with,  others had been diagnosed at a late stage with a parent saying "I always knew he was different but nobody would listen". Varying children and young adults of varying ages - all demonstrating the similar traits of the autistic spectrum. I can't wait for the next installment....