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One Six

 Today is Chris’ birthday.

He is 16 years old. SIXTEEN. When i went home recently I went through old pictures. I remember us dancing together at the same song repeatedly like it was yesterday. Switching off all the lights and running around in flashlights. Cuddling on the sofa and watching Lion King. Doing his language therapy exercises with him. Learning how to count, spell, speak. It feels like we were doing all these things a few days ago, not 10 years ago.

His birthday parties used to be extravagant. I’m talking numbers, food, cakes, presents, trampolines, castles, everything. My nan owns a confectionery, so all of our cakes were/looked amazing. My dad is a chef, so the food was endless. Up until we introduced the programme (calendar etc) I don’t think he really knew what a birthday was. We explained it to him as well as we could, but now he knows that the 6th of May means party, candles, cake, family, presents.

Chris wont get facebook posts wishing him happy birthday, he won’t get texts, he won’t go out and celebrate with his friends, he won’t ask for money to spend, he won’t ask for expensive presents, he won’t make a big show of opening presents. When I call him to say happy birthday he won’t say thank you, he’ll kind of mumble and then when i say i love you, he’ll say i love you too and continue what he’s doing.

He will be content with having his family around him, the people who will remember him and love him forever; oh and eating cake, my nan made a chocolate & strawberry ice cream cake this year. He will meet and greet everyone at the door, allowing them to hug him and kiss him because he knows that’s what is expected.

Birthdays are weird, he doesn’t grasp the concept of birthdays but then again what’s to grasp? Our birthdays make us think of how old we are, what has changed in the last year, what we have done and what we have missed. We stress out ourselves. Chris’ birthday does this for us times ten. In two years he’ll be an adult. I remember thinking how far away that was and no need to worry about it now. But it’s coming. He’ll finish school and then what? Do we look for a job he can manage? Will he follow through with it? Will he be happy? Will people be accepting? These are questions that taunt families living with autism every day.550097_10150952541630030_464717958_n

But then i stop myself and think – when he got diagnosed we wondered if we can handle it, if he would ever speak, if we would ever be able to communicate with him. We worried whether he would be able to do things for himself like dressing up, eating, bathing. We overcame all of that. He is now a healthy 16-year-old boy who can read, write and do advanced math. He’s a fully functioning teenage boy who can do anything for himself but requires supervision and consistency. When he was five, we never would have imagined sitting down and having a conversation with him about what he wants, why he’s upset, how we can fix it.  We never thought he would handle school as well as he did, or socialise as well as he does.

That little boy that threw tantrums in supermarkets, kicking and screaming on the floors, that kid that wouldn’t give us the light of day unless he needed something from us has grown to be a loving, affectionate young man, who uses words to tell us he’s feeling tired or hungry, who asks us to cuddle him and kiss him, who tells us he loves us when we’re mad or sad.

He is the light that guides our lives and without him we would be lost. We will take on any challenge the future has for us because there is nothing we can’t face, there’s nothing we wouldn’t do for him. He ignited a fire in our lives that we will keep forever, he has made us better people, he has given us more than we could have asked for, and every day he gives us more. He doesn’t hurt us, or make us cry. It’s our own minds and worries that make us ill thinking of the future.

Their love for you is complete and pure, even though they don’t show it or tell you. Your love for them is overwhelming, it’s consuming. Don’t let it tear you apart, use the fierce passion that they evoke in you to push forward. Don’t let your worries overshadow the love.

Celebrate the blessing of having them in your lives on their birthday. Don’t think or worry about them not having friends to invite to their party. Be grateful that the people that love you and them will always be there. Be happy that you get to do this with your kid every year. And never give up, never stop trying, never settle.

Happy 16th Birthday Chris my love, my world, my brother.

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I know you

I’m writing this for the families.

I recognise you when I see you; in the street, at the shop, on the train, at a restaurant. I see you, I know you; we think the same even though we don’t live the same life and  I know you see me too.

You live with autism:

If your kid, brother, sister etc has never told you about their day.

If you have spent the most part of a day repeating one sentence over and over again.

If you wake up and wonder who will take care of them after you die. (If that sentence put a weight on your chest right now)

If the sight of a teenager shaking their hands and hopping in the queue at the shop makes you smile and cry at the same time.

If you find it strange to have a conversation with a five year old.

If you pause before answering “How old is he?”.

If you are an expert on graceful declines for when you get invited somewhere.

If going to a restaurant isn’t something you do for fun, ever.

If you haven’t focused entirely on a conversation with another person in years.

If when you leave the house you carry a bag full of their ‘favourite distractions’.

If you have ever wondered whether they will have a friend.

If you cried when they became teenagers.

If you know what “stimming” means.

If you know what these stand for: IEP, SPD, BCBA, EEG, GF, CF.

If you know what a decompression chamber is.

If you know that achievements mean different things to different people.

If you appreciate ordinary days.

If your answer to “How do you do it?” is a smile.

If you never wonder what you are made of.

 

I’m writing this for the others.

Our children, brothers, sisters have enriched our lives in so many ways.They are fierce, and bright, and beautiful; they make us fearless. They know what they want, and are uncompromising in their pursuit of it; we know what we want and we are ferocious in our pursuit of it for them. They make us better people; because of them we are hungry for knowledge, we have purpose, we have strength and we can face anything.

Here are the top ten things that people who live with Autism, every day, want you to know:

1. Don’t feel awkward when we say they are autistic. Don’t ‘Aww’.

2. Yes, they are different but they don’t need your consolation. Yes, you will need to treat them differently, but they are adored.

3. Don’t say “He’ll grow out of it”. They won’t, the sooner they get diagnosed/treated the better.

4. When you see/hear them on a bus, a plane, the shop, the street, don’t try to discipline them; hell hath no fury like a parent of autism.

5. Don’t stare. I always think I’d love it if the people who stare would just ask me about him.

6. They are children. They are innocent. Their love is so pure and overwhelming. They bring us more joy than hardship.

7.  Give the family support; not pity.

8 . Accept our kids the way that you assume we will accept yours.

9 . Teach your children about autistic children in a special needs class at their school. Ask questions. Educate yourselves about Autism.

10. Remember – every day for us is a battle, a battle we are happy to fight, a battle we will fight forever.

We know you when we see you, so get to know us too.