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. Life 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.
Join me for a free 5 part email series, Little Hearts, Big Worries offering resources and hope to parents.
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
Thank you, thank you and thank your for sharing!! I am not a special needs mom but I have a family member who is and has a child around the same age as my youngest. This is such a great article to read to know how to be the best friend I can be to her. I really enjoyed reading this and learning to understand her position a little better.
This is absolutely beautiful. My eyes were welling up with tears. All of this is so right on. I love the idea of a prayer group.
Kirsty @ My Home Truths says
I love everything about this post. As a fellow special needs mum, all your suggestions are spot on. I’m usually too overwhelmed to accept any offer of help so making a more specific offer of help would definitely make me more inclined to accept. Thanks for writing and sharing this x
This is beautifully written. Thank you.
Full Spectrum Mama says
Oh that opening part – SO true for me as well. I was always the giver and now sometimes it’s all i can do to get dressed, and get the kids dressed…
And the INCLUDING piece – just this weekend I showed up at a party for a brief appearance With kids. All other kids were at home, but i can’t do that…Awk-ward.
Anyway, great post.
Thanks and love,
Full Spectrum Mama
Oh, my Gosh! How I wish that I had read or better yet, that other parents had read this as we raised our Special Needs child. She will be 40 next week (oh how did that happened?). Believe me, the struggle goes on as she watches her peers get married, have babies and do so many things as she watches from afar! I was a very lonely Special Needs Mom as my child was excluded so often from parties, overnights, outings to the Mall, etc. Her Girl Scout leader told me that she did not belong in the Troop! I hope parents of young Special Needs kids today are finding ways to receive all that you write about in this beautiful article. Please all of you know that you are doing a great job, even though you may have doubts. No one can love your child more or worker harder for him. Give yourself a big pat on the back.
Thank you for this! I have a friend who comes over when I’m not here and cleans my house, usually on a day when my special has a Dr apt. I come home to a clean home and most times she won’t admit she was here and never accepts any payment. Its needed.. I don’t get to sleep let alone clean..
Barnett Don says
Wow, that is a very beautiful write-up. This is actually brought a rush of memories to me, as a parent of a specially-abled child, this blog contains a very special message, that I will pass on to her. Thanks a lot for sharing such a beautiful message.
Lauren Sparks says
Love this and can relate to so much of it. Thank you for sharing it. I’ll be sharing it on my socials. laurensparks.net
I just came across this blog article & have to say its THE BEST one I have read that realistically expresses what a special needs mom needs. I have a 4 yr old Trisomy 21 Princess with congenital heart defect & over the last 4 1/2 years surprising & shocking to me my village has consisted of 95% non special needs moms. They have been my rock and given me assurance and advice that helped me through very dark & lonely times. Other special needs moms have mostly been a disappointment in their support. I have felt more depressed & hopeless after conversing with another special needs mom. Interestingly enough the one special needs mom that was the most damaging was mom with a special needs autism blog. GO FIGURE! I actually saw a therapist over it. I have never joined or taken any part in a special needs mom group organization etc because of this experience…I just cannot afford to be dragged down the negative road in the ” we are being realistic”. Those non special needs moms neighbors and friends are THE lifeline of my family. Love this article
Sharla Kostelyk says
Thanks Angela. I have found some support among both non special needs moms and special needs moms, but I agree completely that some can be so negative that it can drag me down as well. I encourage you to keep looking though because there are some gems out there that are able to find the joy and blessings in their circumstances. All the best to you!