I am that special needs mom. It’s not something I aspired to or wished for, but it is what I am all the same. I was the friend that gave. I dropped off the casseroles, offered to babysit, organized the fundraisers, gave a shoulder or listening ear, hosted the get-togethers. Now, I’m the friend that needs.
I was more comfortable helping that I am accepting help. It hurts to feel vulnerable. It’s lonely being the mom who is always just a bit on the outside of the discussions that other moms have. And yet, I am here. I am that special needs mom.
I now need the village. I don’t know what I would do without my support network, those who have stood by me during the hardest years of my life. They have listened even when they haven’t understood. They have cried with me, prayed for me, and made sure that I still have the chance to laugh. Some of them are special needs moms themselves, part of this sorority whose initiation we didn’t mean to take. Some of them are women who’ve never walked this road themselves but still chose to willingly come alongside and help carry some of the weight with me.
What That Special Needs Mom Needs From You:
Just be there. When things get hard, people leave. She is lonely. She has already had people slowly back out of her life now that she is walking this road. Don’t be one of them.
Encourage without advice or judgment. Tell her that she’s doing a good job. Remind her that her instincts as a mom can be trusted. Support her decisions even if you don’t understand them.
Don’t ask, “have you tried xyz?” The message that can send is that there is more this mom could be doing. Believe me, she is exhausted enough already. She has tried so much already, only to be disappointed. The last thing she needs is another serving of guilt. She’s got enough of that to go around as it is.
Include her. When my special needs kids were younger and still super cute, I still got invited to the playdates and my kids got invited to the birthday parties. But as the kids got older and the differences became more apparent, the invitations grew less and less frequent. Sometimes I’d even hear about a group of my friends (ones that I had introduced to each other) getting together without me. I still remember crying when I heard about a birthday party taking place for my friend’s little girl and my daughter, who considered that girl her best friend, hadn’t been invited.
Include that special needs mom. It might make your gathering less predictable or more stressful to have her kids there, but it’s only a few hours of stress for you. For her, it’s a few hours of feeling like she and her kids are accepted. It’s everything to her and it’s worth some measure of your discomfort.
Include her in your conversations too. It is common that when a friend becomes a special needs mom, you stop telling her your stories or stop complaining to her about things your kids do or hard things in your life because you assume that your small trials are so trivial compared to her big ones. Or maybe you think it will make her feel jealous or angry.
While I can’t speak for all special needs moms, speaking for myself, I want to be included. I haven’t forgotten what it was like to have toddlers. I haven’t forgotten how hard just regular parenting can be. Yes, I have a lot on my plate but I still want to share my friends’ burdens, to be given the chance to be there for them. Don’t protect me. Don’t think that because my problems are big, I can’t understand yours. Burden me.
Extend grace. This is a bit of a tricky one because I just finished saying that you should still treat your special needs mom friends normally and now I’m saying that you need to make exceptions for them. You do. You need to both include them and extend them grace.
They will be late. They may cancel on you often. They can’t be as dependable as they want to be.
Their life is often determined day by day or minute by minute and a medical emergency or being up all night the night before or an epic meltdown ten minutes before they were trying to get out the door mean that they can’t control things like being on time.
I used to be the one bringing the snacks shaped like ladybugs with the perfectly packed diaper bag and the kids in the coordinating outfits with their hair done beautifully (true story). Now, I’m the one arriving with a bag of tortilla chips I picked up at the convenience store on the way, asking if I can borrow a comb to fix up one of the kids’ hair, twenty minutes late, and even my own clothes don’t coordinate.
Don’t give pat answers. Don’t say, “Everything happens for a reason.” or “God doesn’t give you more than you can handle”. I was so relieved when I discovered that it is a myth that God doesn’t give us more than we can handle because before that, I’d been feeling a bit angry about what God felt I was capable of. When we found out that our daughter had progressive hearing loss on top of all of her other special needs, hearing pat answers made me want to scream.
Pray for her. As I type this, our family is walking a particularly hard road with one of our special needs kiddos, harder than I ever imagined possible. There is a group of women who have offered to sign up for days to pray for us. Sometimes on their day, they send me a scripture verse or song to encourage me and remind me that they are lifting us up in prayer. It makes me feel like we are not alone.
I had a friend last week who stopped by with a Slurpee and a hug and then stood in my driveway and cried with me before wrapping her arms around me and praying out loud right there on the gravel.
Champion her. This is similar to encourage without advice or judgement, but this is specific to those times when she is low or when others are judging her or gossiping about her. When she is low either due to her circumstances or just the weight of everything, she needs you to build her up. Help her to be stronger. Remind her how strong she is.
I recently had a friend tell me that she thought of what I do as being similar to an athlete in the Olympics, that it took the same type of strength and determination as elite athletes. To have someone tell me they admired those qualities in me and to have someone see what I do and acknowledge it gave me what I needed to push through an extra hard week.
You don’t know when your words could be the difference for someone. When you see that she is down, send her a card or a text or pick up the phone. She needs you to build her up so that she has more to give to her child. And if you ever hear anyone judging that special needs mom behind her back, kindly remind the one speaking that she has not walked in that mom’s shoes and that you think that mom is amazing.
Get to know her child. Take the time to get to know her kids as individuals and celebrate their small successes. Talk more about their personalities than their limitations.
Help. Don’t ask, “what can I do?”. See a need and meet it. Say “I love doing laundry. Would Wednesday or Thursday be better for me to come over and do some laundry for you?”
It is hard to accept help. It’s hard for that special needs mom to admit that she needs help. Sometimes when someone asks me how they can help, I’m too overwhelmed to even know what to ask for. That’s why if someone tells me something specific they would like to do, I am better able to accept it.
Create fun. Bring over a comedy. Tell her funny stories. Text her jokes. Like as a special needs mom has too much seriousness. I miss laughing until my sides hurt.
It’s during those rare moments when I’m having fun that I feel like a normal human again. I love it when a friend plans an outing or brings over a board game to play in the evening after the kids go to bed. It’s in those moments when I can forget about all the heaviness for just a short time. It feels so good to be able to stop thinking about the hard things for even a short time.
Support her marriage. Divorce rates are higher among families of special needs children. It’s a statistic that likely scares that mom. Offer to have her kids over during supper while she and her husband go out to eat. Encourage their relationship. Have them over as a couple.
It’s ok to not say anything. Don’t bring up the worst case scenario or tell the story of your cousin’s friend’s neighbour whose child had the same type of special need and something terrible happened.
If you feel the need to say something, “I don’t know what to say” or “I’m sorry” or “I’m here” will suffice.
I am pleased to have joined a fabulous group of bloggers to bring you this series on Parenting Special Needs Children. Be sure to read their stories this month on support.
Supporting Yourself and Your Child with Special Needs | Natural Beach Living
Am I Going Crazy? | Every Star is Different
Tips For Supporting A Child With Trauma History | STEAM Powered Family
Special needs parents: we all need support (even you) | My Home Truths
12 Things That Special Needs Mom Needs from You | The Chaos and The Clutter
Simple Ways You Can Support Special Needs Parents | B-Inspired Mama
Classroom Supports & Accommodations for Kids with Hyperlexia | And Next Comes L
A Letter to Parents with a Child on the Spectrum | Carrots Are Orange
Supporting a Family with High Medical Needs | Grace and Green Pastures