Special Needs Parents
To all the special needs parents out there: I see you and I understand
This hit me and I wanted to share it. I tweaked four or five words to fit my story, and I hope that’s not too bad , but it is spot on.
This is my part and the authors writing is at the end.
It’s just different being the mother to a special needs child. Everything is heightened. You are not just a mother, you become a teacher, an advocate, a leader, a fighter, a protector and so much more. I don’t talk about it much because to me, it isn’t the focus. It’s not WHO he is, it’s just a word to describe one aspect of him. The only reason I wanted to share is because what helped me most were the people who reached out to me privately and said, “We see you, we’re here for you, and we love you”; and also seeing the stories and experiences of those who were willing to share so we could all learn from their journey. My son is AMAZING and some day, when I feel ready, I will share my truth and my experience.
I have often said how very blessed I am as a mother. Koyer came into my life and made my number one dream come true - to be a mom. What a gift he has been and what a story we have written together. I had Koyer very young and I made a lot of mistakes. But man, one thing is for sure, you can never doubt my love for my oldest son. We have been through quite the journey together. I wish I could have done so many things differently for him, but the one thing I hope he never questions is how much I love him. He is the most amazing human being. I used to take this kid everywhere with me. He was my little buddy. I am proud of who he is and who he is becoming. I know the world is a much better place since he is in it. He is the most kind hearted, sweet natured kid, but also, he knows who he is and where his values stand. He is not afraid to stray from the crowd if what they are doing doesn't align with his beliefs. I could have never done that at his age. He is amazing, and I am thankful that God allows me to be his mother on this earth. I am blessed because of him.
After having a child as wonderful as Koyer, I wasn’t sure I could love another human being the way I love him. But, God is amazing in his design of the human heart, with it's capability to expand, embrace, and love. One thing Hank taught me is that there is always more room for love. My Hank came into my life to teach me that a person has ample boundless love to give, to be a better person, who has more patience, understanding, and strength, and to see all the magic this world has to offer in ways I could have never seen with my own limited perspective. To see the world the way Hank does has blown my mind wide open with amazement and complete wonderment. Hank is the sweetest, most kind hearted, funny little boy. He is so smart that it literally blows my mind. He is my travel buddy, my night time bed hog, and my absolute joy. What a blessing God has given me in allowing me to be his mom.
But, what no one tells you when you are a parent of a special needs child, is that you are not just a parent this time. You don't just get to be a mother. All the ideas of who you thought your kid would be and what your life would look like are now different. You are constantly fielding questions, or stares, or comments, or judgement from others. Once, when Hank, Koyer, and I were at DQ, Hank randomly got up, walked two steps to the table next to him and took a fry off of a man's tray. The man was super upset, "WTF, control your kid!" It happened so fast that I hadn't even processed why the man was upset with me. I frantically told him how sorry I was and tried to explain why he would do that, and even offered to buy him a whole new meal. "Just leave me alone!", he said while every one stared at us. As a parent, you have to collect yourself and get through the moment. I wasn't going to allow some jerk to make us leave the restaurant, so we finished our meal and then left, but it was one of the hardest meals to have to sit through. Hank has never done that before or since, and honestly, after I reflected on it later, I think that was more of just a kid being a kid than had anything to do with his special needs. It cracks me up now, but at the time, it was scary! People also role their eyes at you, look at you with disgust, stare, act like they feel sorry for you, and talk behind your back. This has happened to me in every town I have lived and every place I have traveled. It's as if we have to earn our right to be among everyone else. That's the really hard stuff. You get through the moment and through the day, and then when everyone else is asleep, you sit in your closet amongst the unworn shoes, the clothes you didn't have the energy to hang, and the dust balls you couldn't find the time to vacuum and you cry it out then let it go, so you can be ready for the next time.
But, you know what else no one else tells you? How wonderful most people are. The man who held the door for us at the store, the woman who helped me lift him into the cart because I was struggling, the woman who held my drinks so we could get seated at the stadium, the wonderful notes and letters we get about how Hank has changed someone's perspective or life, the kids who wait patiently for him to catch up or join their activities, the parents who invite him to activities, the teachers who find a way to accommodate their clubs so he can join after school activities, the family members and friends who love and support us, and all the wonderful people in between. You learn to have new dreams for your child, your heart opens wider than you ever dreamed it could, and your relationship with God is accelerated because you know only a God as magnificent as he is would allow such a human to be born and gift that magnificent to you. I think that being a parent is hard, no matter what your child's needs are, so I think it's important that we all support each other, lift each other up, and embrace everyone's individual journey as a parent. Hank is not his diagnosis. Hank is Hank. He is a pretty average little boy who loves to read, play outside, go places, spend too much time on his iPad, dress up for Halloween, open presents, eat too much chocolate, and swim for hours. He wants to play with his friends and laugh too. He might be a little socially awkward, but truthfully, that might just be because of who his parents are more than what his diagnosis is. LOL. He's just a kid, doing kid things, and having kid experiences. And I have never met a person who took the time to know him who didn't love and enjoy his company. My sweet boy.
This journey with Hank has been a life lesson in gratitude, growth, and strength; and I literally THANK GOD EVERY DAY that I’ve been chosen for this path. What I ever did
to be so deserving of the honor of being both of my boys moms, I will never know, nor question, but merely accept wholeheartedly with open arms. God’s glory is magnificent and his blessings are abundant.
Written by author unknown to me, who said it better than I ever could :
Kindergarten drop-off hits differently when you have a child with special needs.
Yes, of course, I’m grieving this chapter that is over with my baby. You can bet I’m going to miss him and all those snuggles during the day. But there’s an extra layer to letting your child go into the care of another person for an entire day. This child, who I have advocated for since before he was born. This child, to whom I have dedicated so much of the last five years. This child, who has given me an even deeper meaning and purpose, shifted my perspective in life, and helped me discover my inner mama bear like never before. Yes, a sweet (yet challenging) chapter is over; a new one is here. And while I’m excited for all the growth and development that I know will happen these next five years inside of these school walls, the fear I have as a parent of a autistic child goes beyond what I experienced with my neurotypical firstborn starting kindergarten.
I worry for your safety.
Will you have friends?
Will kids be nice to you?
Will people take the time to learn how to interact with you and include you, even though I know it will be hard?
What if something happens at school, and you can’t communicate with me about it?
How do I go from knowing and managing every single aspect of your day - from caring for you as my primary role - to passing the torch to school and relying on them for the highlights?
Did I call halfway through the day to check in? Absolutely. This is a process. (Repeats to self, “I will not be a helicopter mom. I will not be a helicopter mom. I will not be a…”)
Communication, building a relationship, and faith that my child is in wonderful hands are what will carry us through. They are learning him, and he is learning and taking in so much already.
To all who will assist my boy in any way at school, thank you for pouring into him and creating an inclusive environment. At the end of the day, all I want is for my child to be safe, to be fiercely loved and advocated for, and to grow at his own pace. Thank you, educators and therapist!! You are MAGICAL.