One for the siblings.

There are a lot of blogs about children, children with special needs and families. But there aren’t as many blogs about being within a family of a child with special needs. So I’m going to (probably very unsuccessfully) try and explain it. I have a brother with Autism, and don’t get me wrong, a lot of the time it’s great. But there are some days when I can walk in to my sister’s room and we are both thinking the same thing, ‘let’s run away, it can’t be that hard to start a new life can it?’

Living with Matty, it is crazy, amazing, but crazy. I didn’t notice how much of a routine we had until I recently went to a friend’s house and when it got to dinner time they said ‘oh just sit anywhere’. To be quite honest, at that point I was a bit stuck. In our house there is a seating plan, we have our own cups (take my tea mug or Matty’s hot chocolate mug and all hell will be let loose) and things are done in a particular order, change that order and…well, you can probably guess, it aint pretty AT ALL. 

A lot of people ask me to explain Autism, and that is really difficult, but it goes a bit like this...you want to watch a film and you need a DVD player to do it. You crawl round to the back of the DVD player (covering yourself with dust as you go, has this area ever been dusted?!) and you see one cable that splits off in to three parts, red, white and yellow, with three sockets, get it right and you can watch your film. If you don’t get the order right you may see the film but not hear it, or vice versa. You may not even see or hear anything, only get a humming sound (or a slightly worrying whirring sound if you are using our DVD player, followed by the a bit of smoke…) or it may be fine, just with a bit of interference because the plugs need to be tightened a bit. Either way, you have everything you need to watch the film, for success, there is nothing missing at all. People who have Autism have everything that they need to be successful, but their cables may not be coded correctly or in the right order. As a family of someone with autism, it is our job to help Matty find the picture so he can watch the film comfortably, no matter what it looks like to us. That make sense? Who knows.

There is a piece written by someone called Emily Perl Kingsley called welcome to Holland. It sums up what it is like for families of children with special needs, it’s not easy, it’s crazy, but it is beautiful. A good friend of mine wrote her own version, have a look on the link below, I think these pieces of writing sum it up perfectly, I will put it at the bottom for you to read.  http://www.revelationsofaslummymummy.blogspot.co.uk/2013/05/welcome-to-planet-zorg.html

Being a sibling isn’t easy at the best of times, Katy and I used to fight SO much when we were younger (weird as now we are very close, she is more of a friend than a sister!), and I am constantly reminded of when Katy was learning to walk, she was holding on to the sofa to cling on to, when I put my foot out to knock her over, Katy then proceeded to sink her very small, but very sharp teeth in to my toes, I wouldn’t be surprised if I still have the scars…but having a sibling with special needs is so much more than that, its twice as crazy, twice as difficult, but the rewards are amazing. Seeing my little brother stand up in front of a big group of people at his year 6 leaver’s assembly and tell them that he was going to join the Lego robot club at secondary school would make some siblings cringe, but I was SO proud. 

Some of the most amazing people I know have siblings with special needs, at the conference I go to every year we have a session for siblings, and some of the things that are said there are brilliant, these siblings are generally about 5-15 and have no trouble holding back what they think! We have so much fun in these sessions, shaving foam fights, ice cream gutters, water play, you name it…we do it! 

So yes, some days I could honestly throttle him, but having a sibling with autism has shown me just how much our family can work together as a team, we would never of been this close had Matty not had autism. So I LOVE it.

Here’s to the siblings, I love you all. 

“When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”