Acceptance: the aftermath and the after glow Part I

When my son Dara was 5 (almost 5 years ago! - yeah yeah, I am a little late talking about this ;) his nursery school had a string of  'worries'  -
"He doesn't 'play' with toys"
"He gets upset when the room structure is changed"
"He's very knowledgeable about space" (is this a worrying trait?)
"He acts inappropriately" e.g. he hides under the table and has on occasion taken off his clothes......I definitely knew that, unfortunately!

The list went on. They were very supportive and finally encouraged me to consent to an educational psychologist visit; to observe and perform some tests on Mr D in school. I was sure, that at  last someone might see his behaviours as minor eccentricities (yep I was still in denial).

So, they executed their tests and the results suggested that Dara displayed the criteria for an Asperger's diagnosis. He was then referred to a paediatrician and speech therapist. During our final diagnostic visit I experienced what can only be described as a 'winded' moment. I witnessed what perhaps others had observed. I was lost for words, breathless and on the brink of tears. As part of this session a play area was set up - a garage, cars and some figures. The speech therapist encouraged Dara to role-play situations and he just could not interact, on any level. Instead he barraged her with a string of "did you know" statements about space. In those short moments, I tried to flick through my memories  and sure enough, I had never sat down to create with him, a scenario where Dara may have been uncomfortable. I had always followed his lead.  Lots more tests followed and with each one, my heart sank  further and lower. I knew. I saw the dawn and I realised. When the paediatrician sat down with him to discuss a picture where quite alot of people were sitting at a table, eating and  having a celebration. Dr M  asked Dara "why is everyone sitting together and why are there so many people?"  He took a long pause and finally replied "I suppose alot of people were hungry". I managed a nervous laugh and thought that any emotional concept he might have, would need to be 'learned'.

We came away with a diagnosis but I refused to see it as some kind of inhibiting factor. I saw it as a challenge, for both of us!

I accepted that he had this set of behaviours
I accepted the diagnosis for that reason
I accepted that this journey would be coarse and jagged


I accepted that this WAS Dara and I would do everything possible not to lose the amazing kid he was and is. To nurture his strengths and somehow direct him socially whilst managing his anxiety.

During the period after diagnosis, accepting the diagnosis and the many many discussions that followed, I fell pregnant again. I was exhausted and I seemed to find myself amidst a battle field of sorts. Fighting to make sure Dara was happy and contented at school. Fighting the idea that the behaviours which my second son Lorcan exhibited were nothing to do with Autism/Asperger's. Fighting to stay awake. Fighting to earn a living for my family and be a stay at home mum. Everything seemed to be a fight!! It was a dark time which eventually became an enlightened one. I was knee deep in the aftermath, I'm sure many parents with ASD/Asperger's kid's can relate to this.

After glow I hear you say, what about the after glow!!

I promise that my sporadic entries will gain momentum. The after glow did come but I've ran out of time! School runs, dinner to cook, homework blah de blah......

Next time!

Thanks for reading

Roisin

"but all kids do that!" my growing frustration with flippancy and ignorance.

I was going to compose this blog chronologically, respectively but then I thought no, life is not a straight path but a winding multi terrained obstacle course! I slipped off the writing cliff but have clawed my way back, at least momentarily.

Sometimes, niggly things will recurringly surface and the need to purge at 4am becomes overwhelming. This is such a moment.


I am sure that many parents of kids with autism will hear these statements "..but he seems fine to me" or "my kids do that". I internally scream at these wonderful harmless musings, and they may even come from the lips of family and friends. I want to shout "do you actually think I invited autism into my family?" I want to gently tell them that when my boys went for their ASD assessment, it was perhaps the only test I wanted them to fail. I was convinced that everyone else was wrong and my denial was completely founded and correct. I had alot of growing to do, especially if I was the assistant director of my boys growth and development also. It was never a goal of mine, to have a double Autistic Spectrum diagnosis!

I am actually really amazed that a telepathic snap judgement can be made so easily, about someone else's child!

When those around me are educated about ASD they can spot the inner torment of my dudes a mile away. They can hear their gentle humming or see the sometimes inconspicuous finger flicking. This is how kids and indeed adults cope with our world, block it out and visualise their own reality. The people who see what others ignore and have no sight for, are my constant reminder that yes, ASD exists  in my gorgeous and amazing boys. Despite this acknowledgment, I am incredibly grateful to those who CAN see.

I do actually have moments when I forget, when life is gentle and easily paced, when things seem to have an essence of normality. Then the storm brews and our house is lifted into the air and spun around - we all know the scene right? Except our life reverses, it's not Technicolor, far from it. Everything is black and white with no space in between. There is screaming, tears, anxiety, self loathing and incessant demands. It's cyclical, it's ok. We go back to the drawing board to inject some colour; visuals, diaries, comic strips, social stories, hope and unconditional love.

To those of you who say the quips above to the parent of an ASD child, please know that how it is understood sounds like this - you are a liar - you are imagining things. Perhaps I may start to wonder if all those professionals who pinned an unwelcome label onto my children are delusional or unprofessional, perhaps I am??

Ok, so this is more of a rant than a chronicle, but it's incredibly  important to remember that if you have no experience of Autism and in particular (to my family) Higer Functioning Autism then enquire, educate and embrace the knowledge that ASD exists where it is not completely obvious. Show respect and empathy, or;  maybe highlight the thought that your kid, if they have so much in common with mine, might actually need to fail those very same tests?

Thanks, in advance, for reading.

Roisin

Don't Step on the Cracks!!!



How many times have we said, either out loud or in our head's, "don't step on the cracks!"? I wonder if there is anyone out there who hasn't slipped into that thought at some point.

What if though, someone applied this rigidity to lots of aspects of their lives. How would we deal with them?

Intolerance? Avoidance? Interest? Acceptance?

Well, If I'm totally honest, I've experienced that chronology, and more!!

When my first son Dara was born, I knew he was different from an early age, his engagement was different (he would line up toys and rarely interact with them) and his abilities were somewhat atypical (he would sort according to colour and shape - but couldn't put two bricks together!). Yet he was amazingly emotive, enchanting, demonstrative and happy - we never once thought that he may be on the road for an Autistic Spectrum Disorder diagnosis; a label which I'm not wholly comfortable with. Everything had to be a 'certain way' - a particular colour, shape and texture. This was 'Don't step on the cracks' on amphetamines!! Melt-downs were an hourly event, any change was met with tears and almost every outing ended with me carrying him out, red faced and embarrassed.

When Mr D was 3, these rigidities became so heightened that my tolerance was at it's lowest. I had another toddler to care for and I was finding things really tough health wise too. So yes, my initial reaction was Intolerance - I couldn't or wouldn't understand - what would those introspection's bring?

I chose to just Avoid the fact that there might be something that needed intervention. I just carried on, and my instincts kicked in. I tried my utmost to meet his needs and chose to use pictures to explain things instead of words, mainly with books - not visual time-tables, I'll come back to that another time. Now, Dara wasn't non-verbal, anything but, he could talk his way in and out of most things, amazingly the conversation revolved around space or something else he was slightly over interested in ;). I got every Usborne© book on everyday life available and used it to explain, and I suppose, normalise family life.

Well, I guess this is where Interested comes. I started to have a few ping moments, I realised I was onto something good. It wasn't quite eureka! I was too exhausted for that, but it was a start. I began writing lists, mainly for myself, I'm not a natural organiser! From the moment the sun rose in the sky, I knew exactly what I was doing, slight exaggeration, but you get the gist. I was seriously interested in not only his behaviours, but his reactions to this pictorial communication.
 
Together, we created books of symbols, pictures and words. This is where I plug
www.storycubes.com, we used Rory's Story Cubes® for understanding thoughts, feelings and situations. Dara carried his books around like comforters, his little link to the outside world that confused him so much. These messages were on a par with 'welcome to planet Earth'. Dara was in the cockpit, he wasn't ready to land, but he had started his journey of self-expression and self-awareness.

Acceptance?

More next time......... :)