An Open Letter From a Special Needs Mom in a Season of Celebrations


Dear Friends,

The photos from graduation turned out great. I’m happy for you. I truly am. Your kids have done so well, and the look on their face was that of someone ready to head out and conquer the world. Your children are beautiful, successful, amazing adults. Oh, the places they will go in this world!  

But if you notice that my smile doesn’t extend all the way to my eyes, well, that’s because this season of celebrations is hard for me — a Special Needs Mom.

As moms of children with special needs, we’re not able to participate in many of these activities you are reveling in at this moment. We don’t have the certainty that one day our kids will graduate, too, and set out to conquer the world. We are worried, yet, that perhaps they never will. They might not graduate, or even make it to college. They might not be able to do much on their own. Your child’s success just magnifies the fears I already have for my own child. 

And, the parties you invited us to, they seem wonderful, but please understand that even those can be a burden. We’re not used to parties much around here. I don’t think we’ve been to a birthday party since the first grade.

Parties and festivities are just another loud, over stimulating quagmire that are a struggle for our children, not a celebration.

They are places for them to fail, not flourish. Don’t even get me started on the class trips to amusement parks and water slides.

I know you’re looking forward to your summer trips. I wish we could, as well. Overnight trips are a mixed bag in our house. Sometimes they work out great. Sometimes they are sleepless nights and struggles in foreign environments filled with mosquito bites and scary noises. Airplanes and airports full of dispassionate and impatient people who really couldn’t care less about our special needs child and their issues.

As a Special Needs Mom, I want you to know that I celebrate with you in spirit, but please understand, I can’t always celebrate with you in person. The road ahead is uncharted. I can’t see around the bend. I still suffer daily from well-meaning friends and strangers who offer solutions and cures of every kind from essential oils to supplements to remedies for constipation. I’m just trying to survive and hold on to the knowledge that we’re doing our very best. A flawed best at that, but it is our best.

We might envy you one moment, and thank God the next that we were chosen to be a Special Needs Mom. We wouldn’t have it any other way.

It’s a tough dichotomy of idiosyncrasies and it always will be. I know your kids aren’t perfect. I know you’ve got your troubles, too, but while you’re making plans and picking colleges, we’re just trying to keep up with the medication refills and doctor’s appointments. Our triumphs may pale in comparison to yours, but they are triumphs. Small accomplishments our kids have worked years to achieve. It may not come with a cap and gown, but it took an equal amount of effort. 

Be patient with us.

Understand when we say we’re coming and we don’t show up. Be compassionate when we look at your growing, developing, neuro-typical kids with tears in our eyes. There is so much we don’t know, we can’t know, about our childrens’ future. Love us anyway, when we pull away out of self-preservation. Call, write, reach out. We are most silent when we are struggling, and while you can’t ever know what it’s like to walk in the shoes of a special needs parent, you can walk alongside of us regardless.

We need your support. We need your friendship. This road we’re on is a lonely, foggy place of unknowns and isolation. 

And our kids? They need you, too. They need the unconditional acceptance and love from other adults and teens that you and your family provide. Keep it coming.

Congratulations, again, on all that you and your kids have accomplished.


A Special Needs Mom