When you have a baby, you roll the dice.
Boy or girl. Tall or short. Brown eyes or blue. Quiet or outgoing. “Normal” or… unique.
Sometimes you know right away that your child will lead a special life. Sometimes it’s a slow process of discovery.
But it always comes with surprises.
Changes to your life plans. To your expectations for your child. For his future. For yours.
The differences may be obvious to the world or perhaps more subtle.
Either way, when it happens, you join an elite club of women who are walking alongside their special, beautiful children every day.
A special needs mom becomes an expert in her child. What he eats. When he sleeps. Who he’s with. How he reacts to bright lights, or sugar, or too little sleep. When he last ate or exercised or pooped. She has lists and logs, calendars and notes. She knows it all.
She becomes an advocate for her child. Educating others. Speaking up on his behalf. She battles the stigmas and confronts misinformation and ignorance. She may be called pushy or loud. But she doesn’t care (or maybe she does and goes on anyway) because she knows that her precious child is depending on her courage, her persistence, her loudness in an world that doesn’t always listen.
She becomes a cheerleader. The encouraging voice that reminds him every day, no matter how difficult, that he is more than his limitations. That cheers for the successes, the moments he overcomes. And holds him when he doesn’t. Then reminds him to get up and try again. To try differently if he needs to. But to keep trying.
She becomes an authority. She reads all the books and articles. Collects information and masters subjects she had never wanted to study. She asks the tough questions and challenges the answers when necessary. She speaks the alphabet soup language of special needs: IEP, ADHD, APD, LD, RAD, OCD, ODD, EBD, ASD, CBT, RTI, SPD, OHI, ID, HH, VI, CP, OT, PT, ABA … LMNOP.
She becomes a guide. Helping others as they face similar struggles. Sharing her hard-earned wisdom. Holding hands. Saying prayers. Being present. Offering the support she wishes she’d had.
And she gets tired too.
Tired of the appointments and follow-ups. Tired of juggling medications and side effects, co-pays and deductibles. Tired of the looks and the questions. Tired of explaining again. Tired of second-guessing her decisions. Tired of the added pressure that comes with caregiving a child with unique needs.
But she gets up every morning and does it again.
Because her child is special.
Not just “special.”
But so divinely, amazingly, uniquely special.
As special and perfect to her heart as the moment she knew she would be his mother.
And he makes a difference too. In her life. In his community. In this world. His beautiful, valuable presence is a treasure. And one she gets a front row seat to.
A friend once referred to her daughter as a unicorn, and that’s what I see when I look at my son.
His differentness may set him apart. It may create additional challenges for both of us. It may not always be understood from the outside.
But it is part of what makes him so uniquely, delightfully, wonderfully different. It’s what allows him to see and interact with the world in his own special way. It’s what gives him the power to have an impact in ways he never would have been able to otherwise.
It’s hard though.
It’s hard for all parents, but even more so when you add the concerns that come along with a disability.
It’s hard when your child can’t understand or communicate what’s happening. It’s hard when your child CAN and hangs his head asking why he can’t be “normal.”
It’s hard when you don’t have answers.
It’s hard when you do.
But as we’ve walked through understanding what’s going on in my own son’s beautiful, quirky brain, I’ve been introduced to so many different communities of parents coming together to support, encourage, and embrace each other.
Say what you will about technology, but sometimes it’s kind of amazing in its ability to connect and empower.
There are a lot of questions still looming on the horizon for us. And maybe that is more or less a constant part of raising a child with special needs. But I have hope that we can face whatever difficulties arise.
Because I am now a member of a very select club of amazing women.
I am a special needs mom.
And we don’t give up.