There are so many moments in life that are filled with such amazing joy, and there are those that cause worry in the back of your mind. The kind that keeps you up at night and causes a pain deeper than you knew pain could go. While both of my children are my world, this is a letter to my 4-year-old daughter about her life, and how having a sibling with ASD affects her:
I see the look on your face when the day has stopped once again to tend to the same thing. The confusion I know you feel about the differences between yourself and your brother are very much real. I can hear and see your frustration when there is a lack of understanding that there is a difference between play and pain. Every time that you ask where we are going the change in your posture doesn’t go unnoticed when I tell you we have therapy again. I see how closely you watch me and it makes me smile when you try to repeat my tactics in order to better communicate with the brother you love so much. You are both so lucky to have each other. While he is still very young, you keep asking me when he is going to grow up and stop doing certain things. I am almost certain that you can see the worry on my face as I try to smile and say he is still little. I know that even though you have therapists of your own, you feel left out when day after day your brother has someone to play with him, even though they are not here for fun. It hurts me to see you cry, and it breaks my heart how sad you get when some days a hug is okay to give and others it isn’t. I know how upset you get when there is lots of screaming, and I wish I could do more about it. You have extra needs of your own too and I am doing everything that I can, on my own, to balance the needs of the two people who I love the most. Even if there were more of me, much of this would not change.
I see what a determined and kind, amazing person you are and I cannot imagine the compassionate, caring person you will be when you grow up. Your animated personality and perfect little features make my heart melt every time I look at you. I am going to continue to try as hard as I can to create better balance, and give you both all that you need. It isn’t nor will it ever be perfect, but just know that my love for you is. You truly are my amazing Grace and the day you came into my world, everything changed in the best possible way.
I love you to the moon and back, and God loves you even more
By Jessica Nieminski