Top 10 Things to Do for the Mom with a Special Needs Child

By Jill Effron

As a mother to a special needs child, I can sense the uneasiness some of my friends feel around me. My son was born with Smith-Magenis Syndrome (SMS), a rare genetic disorder with complex developmental and physical delays, plus behavioral issues. To say that life hasn't been easy for us is an understatement. Every day is a challenge and I guess it shows, therefore, making it hard to know what to say or do around a mother of a special needs child.

If she’s anything like me, your friend with the special needs child probably wants to talk about it, but at the same time she doesn’t want to talk about it. That’s complicated to hear, I know. She wants to talk about it because she wants to share with you, her trusted friend, a glimpse into her world. She wants to feel less alone. She wants to be reminded of what life used to be, more than she wants to see what life could have been.

But… at the same time, she doesn’t want to talk about it because she doesn’t want to make you feel uncomfortable. She doesn’t want to hear another cliché that “God only gives you what you can handle…” “This was meant to be a part of your journey…” “I don’t know how you do it, I couldn’t do it!” Trust me, your friend can’t do it either, and she’s making it up as she goes along and wearing more hats than humanly possible.

So how do you avoid walking on eggshells when you’re with your friend whose child has special needs?

Just listen to her. And if you’re uncomfortable with her story, don’t blame her, but look inside you to see why you’re feeling uncomfortable.
Buy her a coffee. Her bills are through the roof and the random act of an unexpected cup of coffee might just be the highlight of her week.
Think of Stevie Wonder and pick up the phone to say, “I just called to say I love you and I mean it from the bottom of my heart.” She will cry. And most likely it’s because she probably just got off the phone with a doctor’s office, a therapist, or the insurance company and really needed to hear she is loved.
She’s in mourning. She is experiencing the biggest loss, and must live her life trying to figure out how to grieve a being who is not deceased. You will learn that grieving isn’t just for those who have passed. So respect her process.
Don’t tell her she looks too thin, too fat, too stressed, too tired, or too gray. Just give her a hug, a smile, a “Hey, it’s so good to see you,” a “I miss our talks, let’s get coffee!”
Always ask how the child with special needs is doing. Always. You’ll get a “fine,” or a soliloquy. Be okay with either. You get leave when the conversation is over, whereas, she will return to said child.
If you haven’t heard from your friend in a while, don’t assume it’s because she doesn’t want to see you. Most likely she’s been hanging with her new friends: the doctors, the therapists, and the lawyers. Text or call her more than once to get her the eff out of that world for a bit.
Piggy backing on that one… isolation. She most likely feels like she doesn’t have much in common with her friends anymore. It’s not true. She just needs someone to wipe the battle paint off her face and to show her that the person she was before her child’s diagnosis still exists. She can’t see that. But you can. It’s your job to make sure she doesn’t forget it. It’s too easy to lose yourself in your child’s diagnosis.
Comedy. Make her laugh, take her out for a good time, watch comedy on TV. Make her feel good.
There are no words other than, "I'm sorry this is happening and it effing sucks." Just leave it at that. Just do.

Your friend is strong, but she needs you as she fights a battle she never expected to fight, nor wants to fight. Stand by her side. Be her support. It takes a village to raise a child, and an army to raise one with special needs.

To show your support to the 1000 pairs of parents fighting the battle of raising a child with SMS, please go to the SMS Research Foundation and donate! Currently, research is being conducted at the Baylor College of Medicine to find a treatment for this rare, congenital disorder. This special needs mom thanks you and can feel the cyber support!