Welcome to our world…

Way back when my cheeky little boy was only one,  before his tiny feet had even took their first steps his then childminder raised concerns about his social awareness and his communication skills.  Never had the words “He’s hard work” been such a relief. I thought all children were this challenging, afterall I have nothing to compare him to.  Being told that he was “the hardest work out of 20+ children” on their books was music to my ears!
Armed with concerns about how he had tunnel vision, didn’t listen nor follow commands amongst other niggles I approached his GP who then referred us to a Paediatrician.  Since then it has been a two year roller coaster of hospital visits, tests, observations and therapy sessions. 

Today marks the last observation before diagnosis day. 

The day we sit together with a consultant and team of people to go through in detail what the diagnosis of our precious boy is.  We have finally been told he is on the autistic spectrum (despite having known this for a long, long time but with no one confirming nor denying it), so very soon we will get to find out how this will impact on his and our lives. 

We have already started making provisions for schooling and there will be many, many things we won’t know but it helps having a diagnosis as we will have help and support that we have otherwise been unable to access. If our journey can help anybody, then I want to share it.  

Here is just a snippet of how life with The Monster rolls!….

The Monster is a 3 ¼ year old, cheeky, happy and very busy little boy.  He can’t talk, other than to say the words car, gone and go (when he feels like it). Despite not being able to talk, he is VERY noisy!  He communicates by pointing (which happened over a 18 months  later than most children), pulling at our clothes and excitedly grunting at us.  We’ve worked hard to learn sign language (Makaton and some BSL) to allow two way communication. A challenge in itself when he makes little eye contact.  I often feel like I am signing to myself and then weeks later he indicates he must have seen me as he picks it up!  He can’t sign a lot but can say (through sign) things like “more”….you have no idea how important this one is!  More food, more playing, more food, more singing, more food, more Paw Patrol, and did I mention more food :)!   He can sign car, tell us if something is hot amongst the more basic gestures such as waving, clapping, nodding and shaking his head.  He understands everything we say.  Actually we have to talk in code and now for some things…mention raisins, the shower or van and he will be tugging at us to go to them! He can follow commands, even when out of context. He’s really quite a smarty pants considering he is non-verbal and communication is difficult for him :).

He can not and will not walk.  

He has two speeds, fast and faster!  He didn’t walk until he was 17 months old and boy he has made up for the small delay in not using his feet! He spins in circles and he shakes his head from side to side because he loves the feeling he gets from it. We spend a lot of time gasping in our not especially big house where he is always only millimeters away from a fall. He falls over quite a lot because he is always in a hurry…I also blame his Dad for his ginormous feet!

Imagine a world where you can’t read emotions.

A world where you don’t know if people are happy, sad, angry, upset, hurt etc.  This is how it is for The Monster.  He laughs a lot and fills our lives with happiness but he struggles to differentiate that between any other emotion.  This makes disciplining him virtually impossible and is probably the thing I struggle most with.  Of course, toddlers push boundaries, they test the water and they learn from doing this…he doesn’t learn!  He has an obsession with doors and despite one actually closing with his finger in it, they still fascinate him! Trying to tell someone you are sad because for the second time in a year they have broken your TV falls on deaf ears (he has had 4 hearing tests and a sedated hearing test and there is nothing wrong with his hearing!). Crying your eyes out because you have been pushed over the edge at a toddler class where it seemed only your child was misbehaving goes unnoticed, yelling because for the umpteenth time in 5 minutes you have asked your child not to spin on the bed because they could fall and break their neck is a game and cause for an hysterical outburst of laughter.

Sleeping’s cheating has definitely been the case in our house for the entire of The Monster’s life.  

His Personal Best is sleeping through for 12 consecutive nights.  We have suffered sleep deprivation like you wouldn’t believe.  I have watched Peppa Pig at every single hour of day / night. I have cried myself to sleep out of exhaustion.  I have out of pure desperation called health visitors in floods of tears begging for help.  I can honestly say I have slept less in the last 3 ¼ years than I did in the entire 10+ years of the party days (taking into account two girls holidays, uni and the days I used to go out on a work night until 5am and still get to work at 9am the same day!) There is nothing worse than lack of sleep. I survived months on end on 4-5 hours of broken sleep per night.  Him wide awake for 2-6 hours a night and nothing, I mean nothing would get him to sleep, despite him being obviously exhausted.  

I’ve tried every sleep technique known to man.  

The last three nights alone I have lost around 7 hours sleep! I CANNOT WAIT for the day he wants to stay in bed all day, when he wants to be a lazy teenager…I am going into his room banging pots and pans, demanding he gets up and plays, screaming and crying!
The Monster loves water, he is pretty awesome at swimming and getting help with the washing up is a treat!  He loves having a wash and brushing his teeth….bet that changes when he’s a bit older! I often have to stop him drinking rain water when playing in the garden.  Any shape or form, if he can get wet, he will. It’s his “thing”, that and playing in daddy’s van!  He gets obsessed with things very quickly.  He only has to do something once in a particular way and that’s how it has to be done every time. He is all about routine and breaking that can be quite disruptive. Something as trivial as having someone new in the car with him can cause a complete meltdown, and I am currently struggling with the changes to his nursery hours which have had a big impact on his confidence in all other areas.

The reason I have finally spoke out about this is because whilst I don’t want autism to define him…

I don’t want it to go unnoticed.  This will come as news to friends and family members as we haven’t gone into detail with many people. If you’re one of the few that I have gone on, and on, and on to about our journey, I thank you. You are special and I appreciate your support and on exceptionally rare occasions a shoulder to cry on when things get too much! I want to shout from the rooftops if he does something that to everyone else seems no big deal…if and when I hear the word Mummy or Daddy  out of his mouth I will want to tell everyone!!  

I want people to understand autism more and rather than being judgmental when you see what appears to be a parent not being able to control their child, be a bit more compassionate.   

I look like the parent that can’t control my child and in honesty,  I can’t but that’s not because he is naughty, he has never done anything really naughty.  It’s because he doesn’t understand. The world is a very different place to him, and whilst most go on the quickest journey from A to B we are going the scenic route….we may go A,C,D,E but we will get to B eventually having taken in every sight, smell, twisty turn along the way, so we’re going to sit back and enjoy the ride….

life will be anything but boring!


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