Fighting futility

Today i feel low, firstly ive been fighting off what i thought was just a cold but has now turned into a full blown chest infection topped off with a side order of asthma, which always flares up when im ill.

Secondly we had another appointment with a clinical psycologist and community nurse in the vain hope they may be able to offer some answers and support to Logan's behaviour.  I emerge from the meeting to the news that we are now on their 18 week waiting list.  I get back into my car look out the window and scream in my head.

I suppose i should know by now, after too many of these meetings with various specialists, that there is no cure for logan's autism and these specialists can offer no magic wand, no special answer.  Its all so futile 

I sit there and think it, i know i shouldnt but it justs hit me in a wave of emotion, as if a boxer has just landed a knockout punch i lay on the mat exhausted and delirious and not knowing what to do next.  Is it all so futile, are all my efforts in vain.

As i drive home i curse myself for feeling like this, as if it is some personal failure of my character.  I try to answer the question in my head,  yes it is hard having an autistic child and facing all the associated problems but there is one thing that is for certain that i will never give up.  Saying this to myself my spirits begin to rouse, as if  ive reached the count of eight in the boxing ring, i am back upright and ready to face the next punch coming my way.

So is it futile.............Never!!!!

little steps

I remember a friend i used to run with giving me advice about running saying 'take every vicotry no matter how small even if its completing a 1 mile run'  I remember thinking that i must keep pushing myself and thinking that 1 measley mile is no way good enough for me and that i must at least get three miles in.
This of course left me open to the dissapointment of not completing the distance my mind required or in the time i had set myself.  For a short while it would leave me distraught that im not progressing with my fitness levels or maybe not up to the challenges ahead of me.

I have since learnt to 'take every victory' even if it is just getting out for that mile, and i appreciate this safe in the knowledge that i faced my challenge and completed it.

This epiphony is almost exactly paralleled with Logan's development and how i am dealing with it.   Each victory, each little step must be celebrated as if we have crossed some mysterious finish line.
Logan is constantly taking little steps towards leading a 'normal' life and as i help him i notice that i must not push him too much to succeed first time, and understand that for logan even being able to drink from a little cup instead of his old little bottle is for Logan a massive victory.

Logan must constantly face his challenges, and with me beside him he will succeed.

Diagnosis

I dont clearly remember passing my driving test or my 21st birthday, i dont clearly remember doing my best mans speech at my brothers wedding, but i do clearly remember the day i was told my son Logan is autistic.

I remember my emotions, i remember what i was wearing, i remember the colour of the walls in that room and i remember the empty feeling i had

I have since been asked what was it like being told your son has a severe disabilty and have never been able to explain how it felt so here goes.
Obviously i cannot say how other people feel or felt when they were given such news i can only say how it felt for me.

After a long drawn out process, backwards and forwards between various so called specialists we finally recieved an appointment for a multidisciplinary assessment, which would involve a paediatrician, a speech therapist and a clinical psycologist.  Having had very little to do with doctors and specialists this was all very strange to me and understanding their dialogue was at times difficult.

I remember feeling glad that finally i could get an answer, a properly formulated diagnosis by professionals that would enable me to move forward, that is how i sold it to myself and how i dealt with what i felt was inevitably coming.  
We took Logan in and the specialists came in introducing themselves with a rather relaxed tone, unaware i thought, of the emotions that were surging through me, or maybe trying to create calm.
Logan was tired, i remember he had been unwell and none of us had slept the previous night, but logan was playing with some prearranged toys and was keenly engaging in the tasks put before him.
The paediatrician who was leading the assessment was firing questions at me to which i was replying and then she announced we would go out to allow the team to discuss their findings.

So this was it i told myself and prepared myself for what was to come and before i knew it we were called back in.
The paediatrician went through all her findings and i felt she was going over the same things as if she was becoming tongue tied, but finally she said they are ready to give a diagnosis of Autism.

My mouth dried and nothing came out, i wanted to speak but couldn't. I cleared my throat and started into my prearranged answers saying its great we finally have an answer and then once again my mouth dried and i couldn't get a word out. no matter how hard i tried nothing would come out.  I looked down at the floor, shuffling uneasy as the reality started to set in, and cried.  I cried like i had never cried before, a hollow dry cry.

So i can say to people clearly what it is like to have your son diagnosed with a disabilty,  I can tell you it hurts.  It hurts like no other pain i have ever had.  A hollow, sobering pain that leaves you numb.

sounds of silence

I have thoughts, i have feelings that i want to shout

I have a voice but it wont come out 

I am a person, although only small

I still bleed the same when i fall

I am me please treat me the same, 

Dont laugh or stare, thinking im lame

I am unique, one off, a one of a kind

A silent voice i hear only in my mind

Logan's poem

Hear me cry, hear me scream but please hear me
See me hide, see me sleep but please see me
Feel me kick, feel me hit but please feel me

See me run and see me play, see me have fun and roll in the hay
Hear me laugh and hear my joy but please, please hear me

In the beginning

8.36pm on a late autumnal evening and ive finally got round to writing this,  8.36pm and the words are starting to flow.  
I know what i want to write, i know how i want to write it,  i know all the little things i want to say and share about my amazing son Logan but i suddenly realise at 8.36pm that i have no idea where to start.

Maybe i should start with Logans diagnosis and all the barriers we faced in obtaining it, maybe i should start with when i started noticing different behaviour patterns or logans outbursts, maybe with sullen looks i used to get as i struggled to cope with logans behaviour in public.

I guess we should start at the very beginning,  a time now very alien to me where we had only the one child who was growing and developing into the lovely, clever 10 year old he now is.
Life was good, that is to say we had very little worries, we paid the mortgage, we went out for sunday meals and played in parks with our child tyler.

It was then Logan was born, our family was growing and it was time to think about that 'family wagon'  and for a short time things continued as normal.
After a quick 18 months we were expecting to see logan begin to do all the things that tyler had done as he grew but we noticed there was a lack of development.
It started with logan not forming any words or attempting to speak and soon followed with strange repetitive behaviours forming.
This was the beginning of the worst time in my life and i became wrapped up in the problems logan was having, to the point i was feeling ill.

This was the beginning, i know it now.  The beginning of Logan's autism, the beginning of our journey together, the beginning of a struggle that has embroiled me for 5 years and has seen me run two london marathons.  It is a beginning that has changed me to the extent that i no longer remember my previous self, having put all of my goals, ambitions and desires aside and dedicated myself solely to Logan and ensuring he wants for nothing and gets everything he needs.

That was the beginning and it hurt, like a blacksmith hammering away at my soul, forging me into something completely different.