Wednesday, 9 April 2014

For the First Time

Half an hour ago, I arrived at nursery to pick up Adam.

As usual, he ran over to the gate, wreathed in smiles and delighted to see me.

But today, he stopped, looked up at me and said,

"Hurro!  M-m-m-m-my."

This is the first time he has made any effort to say my name.


Please excuse me if I spend the evening in tears.... :-D

Monday, 7 April 2014

The Letter

Today we received a letter, confirming a conversation I had with one of Adam's consultants three weeks ago.  The letter reads, in part:

"Adam was seen accompanied by his mother and in clinic today...was witnessed to display clear patterns of repetitive speech or vocalisations were heard except for some screaming...Adam did not give good eye contact, share any attention...he did not use any other means to try and communicate with the adults in the room..."

And later:

"In conclusion, and in agreement with his mother, Adam continues to display behaviours which I cannot explain completely by his auditory discrimination problems...therefore today, I have formally confirmed that Adam has an Autistic Spectrum Disorder diagnosis with prominent sensory issues and also hyperactive behaviours..."

So that's that.  We've suspected it was coming for over a year since first seeing behaviours that looked autistic to our untrained eyes, it was of course formally suggested in July and the diagnosis was verbally confirmed in clinic three weeks ago.

Somehow though, seeing it in black and white still left me with that feeling of having the wind taken out of my sails.  This is for life - and it's the third major diagnosis we've faced.  Hearing impaired, visually impaired, autistic.  And it could have been prevented.


I sat down for a while.  Read and reread the letter as the words sank in.  

Took a few deep breaths.

Then, I went to my beautiful boy's special needs nursery where I had volunteered to be a parent supervisor for a trip to the town park.  When the children were led out of the door and he caught sight of me, Adam's eyes lit up and his face was wreathed in smiles.  He ran to me shouting, "Hurro! Hurro!" in absolute delight.

We spent an hour at the park, examining daffodils, looking at ducks, and most importantly of all playing in the playground where the children found a huge ten foot slide built into the side of a hill and sailed down it at great speed.  The heavens opened up in a monsoon of such proportions that despite all of our wet weather gear, we were drenched to the bone, and the ordinary metal slides became deadly water slides propelling the children down so quickly they had to be caught at the bottom to prevent head injuries!  There are both advantages and disadvantages to a group of children who have absolutely no fear - they play like there's no tomorrow...and it's a good thing the adult/child ratio is 1:1!  :-)

Finally, the rain was so heavy that even Adam had had enough and he marched over to me announcing, "CAR," in quite firm tones.  His Majesty was cold, wet and finished in the park and had no hesitation in telling me so!

Home and finally dry, we cuddled and played and I couldn't help looking at my beautiful son just bursting with love for him.  Today, confirmation of another diagnosis that cannot help but mark our lives forever...and today, my son is just Adam.

And I love him. 

Always have.

Always will.

Just as he is.

Wednesday, 2 April 2014

Living With Autism

"Living With Autism"
BBC Horizon
Last night, I watched the BBC Horizon Documentary called, "Living With Autism".  Elements of the program were fascinating...other were deeply disappointing.  

First, to explain, we initially noticed what we believed were autistic-like behaviours in our then two-year-old son in January a year ago and we mentioned these to his various therapists.  Six months later, during his two-year developmental assessment, one of his Consultant's said she believed she had enough information to diagnose autism but we and his other therapists still wanted to be sure that these behaviours weren't being triggered by his other disabilities.  Another eight months of observation, research and living with our son and we were convinced that he did indeed have autism.  At our meeting with his Consultant two weeks ago, she said she believed it was now time to confirm the diagnosis and we agreed.

On this basis, we are very new to 'Living With Autism' and we do not yet have as much experience or knowledge of the condition as many other parents with autistic children.  But allow me to share a small snippet of what our life is like: our son has constant meltdowns - tantrums that involve injuring himself, us, our pets, throwing toys and small items of furniture around and ear-piercing screams.  He cannot abide haircuts, doctors appointments or changes to his routine.  If Daddy leads him out of the house, he must go to Daddy's car or he has a meltdown.  If Mummy leads him out of the house, he must go to Mummy's car...or he has a meltdown.  Adam cannot comprehend or adapt to small changes that would not even phase many other children.  He has absolutely no sense of danger and will repeat behaviours without making any connection between these and the injuries that result.  He has been covered in bruises, has had large goose-eggs on his head and cuts from these injuries.  There have been times when I have genuinely feared that others looking at him will think we abuse our son, when in reality he injures himself.  We have discussed this with his Consultant and expressed our fears, to have her respond with understanding and empathy.  

Our son has very minimal communication skills and while he can sing blurred versions of entire songs or recite lines from TV programs, he cannot tell us if he is hungry, thirsty, tired, wet or dirty.  His social skills are very minimal and he plays alongside other children, never with them.  At any given point, our son will simply pull free of our hands and take off. He does not respond to his name nor demonstrate any understanding of why running in front of cars is bad.  We spend our days constantly scanning for danger on his behalf and desperately trying to keep him safe.  There are many other things I could say but to anyone with knowledge or experience of autism, I know these descriptions will be very familiar.

So when I heard about the Horizon documentary, I made a point of watching it, being sure it would be an interesting insight into the lives of others like ourselves and may offer me some education, tips or tricks on how to help my beloved son.  Instead, what I saw during this documentary was a lovely psychologist who is clearly fascinated by the condition and has studied it for many years.  She demonstrated the amazing skills of those with autism who demonstrate special gifts - human calculators for example - and those who manage to find ways to cope in the world despite their reduced social skills, showing us actors and people in relationships.  There was one, and only one, man who is at the more severe end of autism who struggles to communicate and cannot live independently.  He was highlighted with particular interest because she had met him when he was a child when professional understanding of autism was very different.  Then, there was a fascinating segment on tracing examples of autism in history.

But there, the documentary stopped and I was left wondering where the rest of it was.  What I saw on the screen were overwhelmingly the high functioning individuals who appear to be 'just a bit quirky' but find ways to get on with life and adapt to the world.  

No where - no where - did I see my life or the lives of so many families who live with autism.  No where did I see either demonstration of, or even mention of, autistic individuals who have meltdowns, remove their clothes in public, "wander" or "elope" - as in escape from their parents or carers and walk for miles upon miles and in some tragic cases, lose their lives as a result.  Only the one case of the 57-year-old man who cannot live independently and has minimal communication skills demonstrated to me that autism can be in any way debilitating.

This program was a start - it began by humanising people who experience autism and demonstrating that many are high functioning individuals who find ways to adapt to their condition and cope in the world.  It celebrated the people with autism who have the most amazing intellectual gifts and showed us that autism is not to be feared or shunned....  

But this documentary would have been better titled, 'Thinking About Autism', it didn't show me what 'Living With Autism' is like.  It didn't show my life or the lives of so many others at all.  If anything, the outcome of this documentary could easily lead to a misconception that autism "isn't that bad" and that if those affected with it just adapt themselves, they will get on just fine.  In their review of the program, The Independent said:

"We learned, for instance, that while living with autism presents difficulties, it needn't be tragic." 

But this is precisely the problem.  No, living with autism needn't be tragic.  My son is not a tragedy, he is a whole person whom I adore.  But living with autism presents far more than "difficulties".  So now we need part two.  Autism is a spectrum for very good reason.  It isn't just about those who have 'rainman-like' gifts - it can also be an awful and debilitating condition that isolates those who suffer with it and causes excruciating stress for their families.  Autism is not a tragedy, but nor is it an interesting little quirk.  Autism is a lifelong condition which can be utterly debilitating and life changing for those who are diagnosed with it and for their families.  

I did not see any element of this debilitation in this documentary and that is tragic.