autism

A Letter to my Daughters, the Sisters of My Special Needs Sons

by donna

My Darling Girls,
Please forgive me. Valentine’s Day came and went without a special something from me.  Yes, I sent you a text with my favorite bitmojis (you know my obsession with them), but that was not my plan when the month started and it is far less than either of you deserve.  As a society, we devote each month to some type of awareness. In April I put my game face on and try to cheerlead autism but usually by the second week that enthusiasm has fizzled and the reality of the effects of autism on our family and the unrelenting stress it has brought into our home snaps me out of it.   As an alternative to my April rut, I want to use February, the month of love, to celebrate you! I was never much of a Valentine’s Day girl so I wanted to declare this month (at least in our home) “Show Some Love to Special Needs Siblings Month”.  Who knows, maybe it will catch on because you girls, and thousands like you deserve to be recognized.  Yes, Special Needs siblings deserve their own special month.

As you both know, I have been distracted lately and my anxiety has been difficult for me to manage.  I have cycled through these ups and downs throughout your lives so this is nothing new for you to hear. Both of your brothers have big transitions coming up and in some ways I feel like the finish line is just ahead. The problem is I have no clue what to do and I am in no way prepared for the finish line.  You know that I have embraced my role as a special needs mom but I certainly never bargained for the endless demands that have come with it. I’m not even talking about the demands of my children.  I’m talking about the demands to become an expert on things I had never even heard of at your age. I am expected to figure things out that I am not equipped to figure out and I desperately want to do the right thing. The right or wrong decisions have the power to affect all of us.  I just wish I could create the perfect world for your brothers………..but I can’t.
 As I look at you girls you are a reminder of the girl I used to be before my life got so complicated………just a girl who wanted kids.  Really quite simple.
But enough about me, this is about you!
Let me start with the easiest words I know. THANK YOU.


I hope you know that your sacrifices are what has made our home run smoothly. Your devotion to your brothers and their well being takes my breath away. I hope you know how cherished and adored you are and I thank you for not being resentful as a result of our different life and set of circumstances. I know this could have gone a different way and for your acceptance I am eternally grateful. Your role as sisters carries with it more responsibility than most adults I know and that makes you extraordinary young women.
I hope you know that when you would leave for school in the morning having very little sleep because of the events that transpired the night before it didn’t go unnoticed. You never complained, went about your day and worried about other family members. I also hope you know how badly I felt when an outing like going to dinner as a family turned into an ordeal. You deserved those outings to be fun but may times they were not. Simple things that most take for granted have never been simple for us. 
I hope you know that when you both embarked on your new adventures taking you from our home I cried for days. Understand I was bursting with pride and excitement for you but inside I felt an emptiness. I felt this gnawing ache that I didn’t do enough for you, that my attention as a mom wasn’t fairly distributed and that my opportunity to change things was gone. Please forgive the fact that when we were moving you into college, Nikki, we were trying to deal with a Brian crisis. That day should have been all about you………but it wasn’t. It haunts me. I could cite example after example but don’t want to dredge up all those difficult memories.


I hope you know how much you are loved. I hope you know I have no greater source of pride than seeing the compassionate young ladies you have grown to be.  Thank you for embracing, teaching, babysitting, understanding, advocating and seeing more tears than kids should see from their mom.  Thank you for being my sounding board, my rocks and my best friends. Thank you for being the calm within the storm.
I hope this post doesn’t embarrass you. I am honoring you, my sweet girls,
 but my intention is much  more far reaching. You are the vehicles for me to honor an extraordinary subset of society that is overlooked. You are the unsung heroes that aren’t looking for credit.  From small children to grown adults I want to thank all siblings of people with special needs and give you the praise you have earned.  It is recognized that you bring worries and fears into your adult lives that most cannot fathom and for that I am awe struck. Your strength, your selflessness, your resilience, your unconditional love is noticed. You probably don’t even realize how wonderful you are.  There are still two weeks left in February and yes, I am implementing what I wanted to on February 1. In our home, and maybe others will join, it is your month! It is “ Special Needs Sibling Month”. For once, it is all about you and I hope you feel the love and appreciation you deserve. I hope you reach out to someone like you because your insight into humanity is powerful and of great value.
Thank you for being you………………….. you are loved beyond measure.
Love,
Mom