Day two of New York trip awaiting hurricane Sandy

Day two of New York trip and having a blowy birthday here!  managed to get t Soho, Little Italy, Times Square and Chelsea to visit Jake's Godmother Annabel and her husband artist Anthony MacCall - check out his amazing work all over the world http://www.anthonymccall.com/

 

So found the best cupcake cafe ever and Jake spotted Gabriel Byrne from Usual Suspects choosing a cupcake. He had v glamorous young girlfriend waiting outside with red boots and sweet dog. See pic behind Jake to left. Was raining but not hard and not too windy but picking up now looking outside my hotel window.

 

All shops, galleries, museums were shut!  I got a lie in though.  Surreal looking at hurricane reports from hotel TV.  Movies and popcorn for bday tonight!

Leaving the storm of autism to the storm of New York

For my 40th birthday I have been whisked away from the storm of autism ie from doing daily tasks like rescuing Joel's ipad from the roof and various other sundries he chucks out the window to telling him to go back to bed at 3am having discovered him leaving a trail of yoghurts from the fridge to turning all the lights on downstairs with him sitting on the sofa reading the Argos catalogue as if it's the most normal thing to do in the middle of the night...I digress...the point is New York was a break we were looking forward to without kids for four nights!!  Arriving today the passport guy said we should have checked forecast before leaving as New York haven't seen a storm.  like the one coming tomorrow since they made a film about it with George Clooney!!  Hurricane Sandy on its way aka Frankinstrrm.. Staying in Manhattan and loving Madisson ave, St Patrick's cathedral, Trump building, shos... watch this space....

Ten helpful suggestions to offer a parent with a child with autism

1) Offer to babysit for an hour or two

 

2) Be positive not sympathetic or negative

 

3) Be practical not fatalistic





Birthday cake by Marianne a great friend in Australia

4) Offer to make a birthday cake for your child - when Joel was diagnosed I had a young baby too and was overwhelmed.  Joel was on a new gluten dairy free diet (known as the autism diet) and two years in a row my wonderful friends Sophie and Marianne in Sydney made the most wonderful cakes for Joel and Holly.  It was that type of support that got me through the hard times

5) Have  a 'can do' attitude - let's give it a go and if it goes pear shaped at least we've tried.  Be prepared for the unexpected though!

Joel age 4 with Holly's birthday cake which was done by Marianne gluten free thanks Marianne!

6) Offer support by going to the numerous appointments with the parent and child.  I have been to so many medical appointments and alternative therapists too from cranial osteopaths, homoeopaths to urologists, gastroentirologists, paediatricians, GP's (one who told me he hadn't seen such a severe case in autism in over 20 years of practice but who then went on to say he didn't know much about autism but 'I can tell you about Downs'...).  It is useful having someone else there to digest what is being said but also to help look after the child who is no doubt 'bouncing off the walls' as that same doctor put it.

7) Offer to help the parent with their filing systems.  Joel has so much paperwork it can be overwhelming.

8) Have is a sense of humour through this and also don't be afraid to let the parent know if you're going through a hard time.  I had friends who didn't like to burden me but that in fact makes you feel more useless and it's good to offer support even if it's going for a walk or swim or game of tennis.

9) Be supportive even if you think the parent is totally nuts.  Don't judge.  You have no idea what it's like to raise a child with autism unless you've been there.  It is like being hit by a freight train when you get the diagnosis.  Hugs are good. 

10)  Call the parent even if  you don't really know what to say or do.  It's the thought that matters.  You are thinking of that person and it doesn't go unnoticed.

Mary's Poem - a 14 year old sister writing about her older brother who has autism

This poem is from a friend who has a son with autism, he's now in his early 20s and got into university.  He has Aspergers which is on the other end of the spectrum from Joel but the autism still affects family life in all ways.  This poem touched my heart as it reminded me of my own daughter Holly 7 who is a younger sister of Joel and how perceptive she is too at such a young age.  She is always helping Joel but also loves playing with him, tickling him and generally mucking about.  They are still brother and sister who adore each other.

My Brother Whom I Love
 

No expression, no smile,

Those I haven’t seen in a while.

Plain clothes, dark hair,

Thin, and pale.

 

His eyes are staring,

So troubled, but good.

The effort it takes not to shout,

The effort it takes not to hurt.

We do not know,

We do not see,

The things that go on in his head.

But what I know tells me,

He handles the unimaginable.

 

Big hates are crowds,

Emotionally packed rooms,

With noise and laughter and tears.

Maybe the reason for this being,

These are the things he cannot show.

 

Through each day he struggles,

To control the urge inside him.

Though blips occur – it’s not his fault,

It’s a miracle what he does.

 

Family is his greatest friend,

We accept him for who he is.

Though as his youngest sister,

No hugs do I receive.
 

An uncle now, can you believe it!

The love in his eyes, I can tell,

He loves them, he loves us all,

So much that he will restrain,

From the pain that swells inside him.

Autism is no game.

Can you recover from Autism?

The answer is yes.  I often get told in passing about Joel my nine year old son who has severe autism 'and he won't get better will he?' well the answer is actually yes he is getting better all the time with biomedical intervention, ABA school and searching constantly for therapies which have helped him notably the Scotson technique from the Advance Centre and regular oxygen therapy - www.scotsontechnique.com.  We are lucky the centre is not far from us as there's only one in the UK and one in South Africa.  People travel countries to receive this therapy and Joel is down the road!

Biomedical intervention is basically healing kids with autism who have severe gut issues which is what Joel has.  We go to the Annual Treating Autism Conference and get so inspired from the Doctors /Parents/Grandparents who treat autism and indeed recover some children from autism with biomedical intervention - treatingautism.co.uk

Joel in January 2011

Joel is getting better all the time so to all the people who think autism can't be treated it can but for some it takes longer and results aren't instant but progress happens.  But children with autism need the right intervention educationally too and without this they can regress like Joel did.  This picture of Joel around the time he started at his ABA school Step by Step was in January 2011.  Joel had severely regressed into his autism after we got back from Australia in Sumemr 2009.  The biomedical intervention went out the window along with the ABA intervention.  Joel was put in a special needs school for a year without autism specialists and he was babysat instead of being taught anything.  He began to wet his pants, get very distressed and make very loud noises all the time and verbally stimming you call it when repeating a word over and over again as this satisfies his sensory needs.



Joel on his 9th Birthday with Dad Jake in Lourdes

This photo to the right is Joel a year and a half later after being at Step by Step school for children with autism and having biomedical intervention and the other therapies I mentioned.  He is so much calmer, happier and more present. 


There is no quick fix for my son but I know that he is so much better from having received these interventions and this gives us hope!

Don't lose hope as these photos show the difference in Joel and I have to remind myself how far we've come in the space of a year and a half when I'm having bad days.  There are plenty of them in the world of autism.  Joel was distressed just this evening about something but he couldn't tell us.   I am not painting a corny picture I hope as this is not a 'before' and 'happily ever after' shot as this is not the case.  But it's small steps. 

By the way not to sound too naff but I did forget to mention one important ingredient for helping a child with autism as well as the other numerous therapies.....LOVE.  He receives this in abundance.

Signing up to the Cubs with Joel 9 who has severe autism

 

Most parents who have a child with a disability would agree with you that they want exactly the same things that a ‘normal’ or ‘neurotypical’ child would have – a term I don’t use as I usually get asked what that means. I want Joel to be included in most things like after school activities which he enjoys so he goes trampolining and loves that and the teacher is very used to kids with special needs so she’s great with Joel. Joel also did his First Holy Communion and was included in the class though he usually went in sang happy birthday when he saw all the candles and a prayer was said by the group. He promptly left with Hazel his carer who was gently moved on by the instructor.

Joel and me on a Cub outing (he's still in his Beaver jumper)

Next stop. To the Cubs. Joel had been in the Beavers and had loved it mainly for sensory reasons when going on outings he likes the mud squishing in his hands and also liked the paint as he smeared this all over the hall much to the dismay of onlooking parents and Beaver leaders no doubt!! His reputation carried itself before him as I was sat down by Jock the Cub leader and his co-pilot lady Cub leader who both looked at Joel and me asking questions about Joel’s needs and mentioning they knew he ‘liked painting’. After ten minutes sitting with them I had to say to them that Joel was sitting really well and that he was doing incredibly well for a child with autism who finds such things as sitting still without yelping a challenge. To this I had blank expressions as Jock admitted he didn’t have a clue about autism. Why should he? It was my job to explain about it but I didn’t have a clue either and I’m Joel’s mother!

Joel in Etchingham where we lived in 2010

Hanging on by the skin of your teeth

 

Where did that expression come from? I’m sure someone can tell me. Anyway welcome to the world of a 39 and a half year old mother living with a child with autism in a family of five.
I read a book by a parent who had a child with autism when Joel was first diagnosed. I can’t remember much about it apart from this bit; that when you have a new child you imagine it’s like waking up in a new pleasant place like somewhere like Paris in the Spring - sunny, bright and fresh with new hopes.   The parent then went on to describe what it’s like having a child with autism - it’s like waking up and you’re in Beirut. That was my world on 30th July 2003. I woke up in a pretty grim hospital bed in Queen Charlotte’s next to Wormwood Scrubs prison. Welcome to Beirut. Let the battle commence.

Autism is like one battle after another as you face so many obstacles in one day that they are like battles you get through by the skin of your teeth and you think you've mastered one until the next one hits you.  So I would say it's like a war with battles if that doesn't sound too dramatic! That was the description of one mother who spoke to me about her child with autism and it kind of stuck with me.   I was also told when Joel started his ABA autism Intervention programme in Australia age 3 that it was like a marathon not a sprint and some kids learn quicker than others but they all progressed if they did ABA. 

Not only does a parent have to get through these physical and mental battles that her child is having but also there are battles with the authorities to fight for the right for their children to have the appropriate educational setting so that the child will learn.  It really isn't what I thought would happen to me having a special needs child and then having to go to a tribunal where I'm told by an Occupational Therapist that Joel will never learn much.  This was probably one of the worst days of my life and I walked out of that meeting knowing that I would fight even more for my son because I knew as well as my husband that Joel could learn if he was put in a school that understood his autism and that had a method of teaching that Joel could understand.  We were advised by the educational psychologist to move counties as we were clearly losing the battle in East Sussex.

Off we moved to West Sussex within months to start a new case there and thank God it paid off in the end....that's another story I'll tell you later.   The point is.  Never give up.  We didn't and by the skin of our teeth we are here and Beirut is feeling a bit more like Mexico now.  It's a bit brighter, is never dull - colourful is one way to describe it.  Quirky, ridiculous, hilarious at times even. But it has a dark side which comes out from time to time and a desperate side too but certainly it's never boring.