Wednesday, 28 October 2015

No Matter What

I've been waiting to write my next post to this blog but something has been stopping me. I think I've been waiting for that magic day when the boys catch up and act like other little toddlers and that we're finally on our way but my heart sinks to say that that day may in fact never come.

The boys have been so difficult in their behaviour that I felt like I was either failing as a parent or that something just wasn't right. If we put one step out of line with their routine the boys would kick off, if we gave them the wrong beaker, the wrong spoon, if we put the wrong tv channel on, if I wore my hair up instead of down, if a new person came in the house, this would result in double tantrums and when on my own this just wasn't manageable especially when out in public. Their tantrums weren't like other little one's - they would be long and the boys looked like they were terrified instead of angry.

Socks off everywhere we go! Who needs shoes anyway!

My friends would ask me over for playdates but I would have to refuse as I knew this would just throw the boys and I wouldn't be able to physically manage getting them both back in the buggy or car. The times I tried to do normal things, the boys would whine or cry the entire time so it just became easier to spend the time by myself with them. Some friends understood and others didn't - I was judged for being too protective, too detail orientated, too relaxed, not relaxed enough, not stern enough,  too stern, not kind enough, not quick enough - you name it, I've been accused of all of the above. I'm sure I'm all those things but we now know that the way the boys were behaving was nothing to do with my parenting skills!

I called the health visitor one day when I just couldn't take anymore. I told her I thought something was wrong - they weren't hitting their milestones and their behaviour was getting just beyond difficult. She came over the following week and observed them. "I just don't think you're reading them, you're just not understanding them. They're frustrated as they were born so early and they want to do all these things but they can't so they shout a lot".

Once again, I put my trust in someone and I shouldn't have. Instead I did listen to her and again I felt the guilt of bad parenting. Some friends who spent time with the boys could see how their behaviour just wasn't right whereas others thought I was being over analytical, that the boys would grow out of their oddities and as they were my first I was just inexperienced. I should have listened to my instincts - the saying "mums know best" could not have been truer!

Gorgeous smiles from Xander

When the boys turned two I asked for an individual assessment rather than in a group as in my heart I knew something wasn't right. The words of the paediatrician will haunt me forever.

"Yes, your boys are most likely autistic".

You think there would be some kind words preceding her statement but no - just straight out slap in the face "autistic" . I kept it together until I got home and then the flood gates opened. Big time!

The first thing that came to mind when the paediatrician said those words was complete sadness. I didn't know much about autism but I knew it was a life long condition and that they wouldn't be like other kids at all. All this time I had been waiting, hoping and praying for some kind of normal experience with the boys but so far everything was so difficult and filled with tears and tantrums that the reality that this may just be life from now on was too much.

Of course we had lovely times with the boys - moments when they were both happy, laughing and their cuddles and kisses were endless for us but when we had to do anything normal outside of their routine it meant A LOT of hard work on our part to make it work. Their sensory issues were out of control and feeding time was just a disaster. I try and capture all their smiles and happy times on camera as they're so precious to me - these are the boys I know and love, these are my little guys! I want the world to see how amazing they are hence the millions of photos on FB! I'm SO proud of them, SO in awe of their strength to have survived everything they have and still fight on despite finding the world a very scary and strange place to them.

We have some amazing friends who know how tricky the boys can be but they still invite us around to their house to play with their little girl and to just enjoy our time being 'normal' and of course family have been incredible. More than incredible. Without them I would have crumbled a long time ago.

Anyone with a child with autism will know how challenging their behaviour can be so it's no surprise that we have shrunk back from seeing our friends. If we were invited to a little ones birthday party we would either refuse if we knew the house had a lot of doors (obsessed with opening and closing doors!), not enough toys, too many people etc. The times we dared go we would hold our breath as we entered hoping the boys would be able to cope. It was always a stressful time going or doing anything new with the boys. I have been in tears with the boys at several play groups, I've been asked to leave, banned from the library and scowled at by other parents for not controlling my kids. Buttons are a big issue - I'll never forget the day Xander pressed the fire alarm button in a children's centre on a day where the rain was pouring down so heavily there were flood alerts all around the country. We were all ushered outside and made to wait in the miserable rain whilst they did a head count even though I told them it was just an accident and not a real fire alarm. The faces of those parents looking at me as they got absolutely drenched from head to toe - I have to confess, on this occasion I was trying to control my laughter rather than tears! Are my boys naughty? Not for one second - they're hyper terrified, anxious, overstimulated by their senses, frustrated and living in a world where their sensory issues take over and they are of course toddlers!

On the day we were told the boys may be Autistic, Matthew came home early, swept his boys up in his arms and told them he would love them forever no matter what. The look on his face just broke my heart all over again. Of course they didn't understand but they hugged him back and just watched the tears falling from his face.

We were told that the boys would have a full assessment where they would diagnose them properly. We waited 8 long months for our appointment. How ironic considering how important early intervention is. In that time we managed to keep our heads above water and just got through each day as best we could.  it was in those months that we decided we needed some hope in our lives...and that's just what we got!

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