The A word and me

The A word was always going to be watched in this house - there was no question.  It does seem a little odd that I eagerly awaited a drama that highlighted a life with a child with Autism by gathering snacks and pouring a glass of something chilled, but it felt justified because it was a drama about a life that so many of our friends lead and I was intrigued to see how the BBC would deal with such a sensitive yet important topic.

When watching the first episode I worried that families who live with a child with ASD may feel they had gone a little softly softly, that it did not show some of the trickier behaviour patterns or challenges - but this is based on one story or one child and one variation of a diagnosis.  Anyone watching must remember Jo is not Autism himself, just a boy with a variation of quirks, habits, rituals and social and communication needs that are within the autism spectrum. Personally I was excited to get a sense that the story was going to be bigger than the diagnosis alone and that it would look at the impact it had on the family around the child more the just the boy himself.  From there on in I was hooked,

The first few episodes I loved. It was reassuring to see Jo show some of the things we have lived with for so long, the little things... the repeating what you say, the constant finger fiddling, the literalness and the closing a door to open it again ritual made me smile a huge 'I know that one' grin.  It has been watched by family members who have in the past quietly wondered why we had pushed for ASD testing on our own son, but since watching have already openly said they can see bit of him in Jo.

(Just to clarify our son is not on the Autism spectrum, his difficulties are linked to his Joubert Syndrome not a secondary diagnosis which was looked into.)

But now we are a few weeks in and I admit that I am finding some parts harder to watch it.  The drama is still brilliant and I think the BBC has handled the awareness and the understanding of the A word very well, but as the series focuses far more on the family, especially the mother, I am finding it uneasy viewing, my feet squirm and my tummy flips as I can see traits in her that ring true.  I may never have bullied professionals to get my own way and I do not have an older child to see how the effect our sons syndrome and my blinkeredness would have on them... but there are bits that are so very close to past experiences and emotions.

The effect a diagnosis has on extended family - seeing how having a child within the family unit with additional needs effects others has been important.  Like the mother here it is natural to become focused on being your child's advocate, their voice, you tire yourself out running around getting things done, being there, thinking through the next step.  You are so tied up in being exhausted and being a your child's champion that you may not notice how other relationships, which are just as important, may suffer from your inadvertent and well meant single mindedness.  Everyone is hurting yet they are also so wrapped up in their own sadness that they are not asking others if they are alright when in fairness it is all they want themselves.  This is how easy it is for families to crack under the pressure of caring for someone with disabilities and the hiding the raw emotions in awkward humour was something I recognised far too much.

Marriage - this couple are strong, but you can see how the intensity of trying to get everything just right and learning acceptance is taking its toll, especially when one finds it easier to accept than the other.  Everything seems more tense and strained as the childs needs take preference and they are forgetting already who they are, or were pre-diagnosis.  This is why we always go away a few days a year just us.  I know not everyone in our situation can and we are lucky, but for us it is so very important.  

Trying to fix it - last night was the hardest one for me to watch.  Seeing the mother with Jo looking at the photo album when he suddenly talked and felt things he apparently 'should not have' made my eyes water.  I could sense her 'we can fix this' flurry of joy, that this was her glimmer of hope to hold on to and that if she just kept pushing and doing and trying she could take this all away.  

I wanted to shout at the TV "It's OK, he is fine as he is.  Calm down." but her reaction reverberated right through me.  I remember making those phone calls of 'we can do this he will be fine' before a firm diagnosis.  I remember the excitement when our son finally sat up and the *phew* feeling of 'well that's one milestone done we should be one a roll from here' only now knowing that was just the beginning.  I got her need to try and get Jo to do it again and again to prove that she was right, whilst I also saw how the father was more grounded and realistic but did not want to crush this sudden hope he had not seen in his wife for a long time... it was too real.  I knew her frustration, her snappiness, how it comes out in bursts of seeming pushy or bossy or selfish, the silent rage of the unfairness of it all, the over eagerness to want to create friendships for her child because friends made you accepted - the difference is that this time I got to see it from the comfort of my sofa, but for those few moments of TV she was me.

Will I continue to watch the A word?  Of course.  The reason it is treading on my toes a little is because they have got it right... not all of it, but they are exploring the ripples a diagnosis brings throughout the home and extended family and it is a programme bigger than the Autism spectrum itself.  It shows in an exaggerated form how lives are changed so quickly and how we can become unrecognisable despite it being for the right reasons.  

I hope that it gives people who are not familiar with the SEN world a better understanding of Autism and that families benefit from having a more accepting general public and I hold a greater hope that people get a sense of the system we have to work with, the decisions we make and the greater implications this has on our family and friends.  I hope is shows that everything we do, whether rightly or wrongly, whether we hurt the ones we love accidentally, is always done with the best intentions at heart.

I hope you see our love.