We went to nursery this morning to book your trial session, and all of a sudden it hit me – in 4 weeks time I’ll be back at work two days a week, and you will be at nursery. I have spent so much time focusing on how I will be able to juggle all my balls, and how I can minimise the disruption of my part time hours to my colleagues, to Melon, to your Dad.
But the person whose life is going to change most is you.. Melon already goes to school, and she remembers when I used to work. I’m going back to my old job, Dad just has to do slightly more of what he already does.
But for you, the whole universe is about to change.
You and me, together, everyday, is all you have ever known.
And then in a few weeks you’ll be taking your first baby steps away from me. I can’t believe that in the chaos and tumbling confusion of our lives, Melon’s diagnosis, the run up to Christmas and D-day at work, that I haven’t taken more time to consider you.
There are some things that I want you to know.
One day you’ll be old enough to have your own Facebook account. You might look and think “Hey, you never made a page about me Mom”. But you need to understand that you inspire me to create, strive and love every bit as much as your sister does.
I love so many things about you
*The way your entire face creases up when you chuckle and laugh.
*The way you can tear through a peaceful, tidy room like a wildfire.
*The way you say “ta” when you give me something, rather than when I pass something to you.
*Our “car game” where we turn our faces away and then turn back smiling.
*The way you make the noise “ooom” for a kiss.
*Your absolute persistence, even when you are doing something that drives me nuts, like trying to eat the dog kibble or dipping things in the toilet.
*Your affection and boundless enthusiasm.
*The way you dance to EVERY piece of music that you hear. Even the hymns at Church.
*The honest emotions that run across your face – You have your Father’s facial expressions, especially the wide-mouthed smile. And you use those expressions with a wisdom and understanding way beyond your years. You will never be a poker player, but I see the stage in your future…
You have been a healing force in your Dad’s life and mine. For me, the way you arrived into the world helped me heal the scars of my last caesarean delivery, ironically by giving me a new one. For your Dad, he has been able to pour into your short 15 months all the love, affection and tenderness that he craved in his relationship with his own Father. I know he did that with Melon too, but for a Dad it’s different with a son. I can see the love and excitement in your eyes whenever your Dad walks in the room, and I see him grow stronger from it too.
You have taught Melon things already – like pointing, sharing (although sometimes sharing is more like her accepting that sometimes she has to loose..). As you grow, you will continue to be a role model and a mirror for her. You will fill the world around her with conversation, discussion and enquiry and explanation.
I see your attempts to engage Melon and make her play with you. I see her drift away. I see the confusion in your eyes and it hurts me inside. Then you look to me for reassurance and give me that mega-watt smile. Someday you will understand that she does love you, and you’ll develop your own ways to get inside her world. Never give up on her. It is an honour to be Melon’s brother. In the process of learning how to do that role in the best way that you can, you will become more tolerant, more understanding, more of an advocate, more caring than those who have never been able to experience life with a sibling who has extra needs. And if you are lucky, you will learn to be able to see the world through Melon’s eyes, to stop and drink in the beauty and the detail that surrounds us all, and to take comfort and joy from it.
I need to say sorry for some things:
– I’m sorry that sometimes you get swept up in the flurry of appointments and interventions that have become part of our life. You are there at the edge of the whirlwind growing, developing, learning, always loved. As you grow up you may even become part of the whirlwind yourself, to become involved in the interventions, to speak at meetings. This may feel strange, it may set you aside from your peers somewhat, but it will make you a stronger person. The same way it has done for me.
– I’m sorry that sometimes the time I want to spend with you can get eaten up by the things I have to do with Melon. It is not a case of preference. It is a case of necessity. There are things which you will do with ease, basic concepts that you are already grasping, that she just cannot understand without a great deal of time, support and explanation. This is the reality of our lives. The input we give to Melon now will maximise her level of understanding and independence in the future, and that will make a difference to your life and to your relationship with her too. Please never feel that you can’t approach me to ask for my time or attention. Time is limited, but my love and devotion is not.
Your shoulders are so small now, and you can barely walk (although you crawl at lightening speed and can throw with surprising strength and accuracy…). It seems so strange to think of your future in terms of battles and obstacles, but we must prepare you for these. The life of a sibling of an Autistic person has it’s own joys and rewards, and it’s challenges. I can’t be your guide in these, as I have never walked that pathway. I will do my best to highlight the rewards, and to understand these challenges. I will try to surround you with people who share your experiences and can support you further.
I can’t promise you that everyone will always be kind, I can’t promise you that you won’t have to endlessly explain aspects of Melon to the curious, and to the ignorant. Your Dad and I are doing everything we can to become strong, positive advocates, and to support Melon to use her own voice to be heard. But we have no way of knowing how much support she will really need as she grows. And we won’t always be here. There will come a day where you will need to pick up our sword and become Melon’s shield. Be strong little soldier, be strong.
There are times where my thoughts, energy, even my physical presence are elsewhere, split between many duties. But you are always ALWAYS in my heart. You have held it in your hand since the moment I first held you in my arms.
I love you.