I have a dear friend, Allison, who has a super special little guy. Her 3 year-old son, Mason, has a rare genetic disorder called STXBP1 that affects him physically and developmentally.
She’s the strongest person I know and the most zealous advocate for her child. I’m in awe at her resilience and her attitude towards what most would deem a really difficult hand to have been dealt in life.
Though she’s basically Super Woman in my eyes, she’s still a human; still a mom that gets weighed down by the enormity of her son’s diagnosis and gets weary by all that it demands of her. Those of us in our friend group have tried to rally around her and support her the best we can.
If you’ve got a special needs mom in your life and are wondering what you can do to help, here are four things that my friends and I have learned from three years of loving this incredible mama.
1. Offer expertise only if you have first-hand knowledge
Mason’s disorder first presented with symptoms that looked like reflux. Both children of another friend of ours had extremely bad reflux, as well. She was able to provide sound and actually helpful advice instead of mere conjecture after consulting Dr. Google. This expertise helped Allison to speak more knowledgeably with their pediatrician which then allowed them to hone in on the bigger issue at hand. This is not the time for conflicting, uneducated opinions from the mommy-sphere. If something is truly going on with your friend’s child, I would suggest not piping in with suggestions that are more distracting than helpful unless you really can offer help.
2. Help in the ordinary and extraordinary ways when you can
Allison and her family recently moved back East to be closer to family for help. However, she found a very promising intensive physical therapy for her son back here in the Valley. It was going to be a 2-week, 5-day-a-week program. Another friend of ours without hesitation offered for Allison and Mason to come stay at their home for 14 days and have the therapy sessions at their home, as well. That’s some radical love in action! It was a practical way to tangibly assist and make her life easier for that necessary treatment.
I know not everyone has the ability to do something like that. But, if you are blessed with abundant resources and/or capacities to help, don’t give up an opportunity to do so. Some other friends even brought a dinner one night or sent a box of donuts for Saturday morning. (*Meals are always so helpful.)
Offer to babysit other siblings so that mom can focus on her special needs child. The special needs life is wrought with enough roadblocks. Any way you could clear an obstacle would be so welcomed.
3. Celebrate the milestones
Special needs kiddos develop on a timeline all their own, different from both typically developing children and other special needs children. While you may be celebrating your 1-year old’s first steps, the special needs mom is just seeing their child roll over for the first time. Allison calls these “inch-stones” because they take so much longer for her son to meet.
The probability that some children may ever walk or talk is uncertain. They cross a Herculean expanse to get to where your children may arrive with relative ease, and we can take that for granted. So, with all due respect, I actually think they should be called “lightyear-stones” because these children have to fight so much harder to meet every benchmark.
Be intentional to celebrate every. single. victory with that special needs family! Join in the joy as they relish in their child’s ever-expanding abilities because, just like yours, each one is so dang special.
4. Don’t forget about the rest of the family
A lot of focus and attention goes on the special needs child, and rightfully so. Try to find ways to send some individualized love to the other members of the family. Send a small gift to other siblings or be intentional to show interest in what they are doing when you visit. Send mom and dad a Starbucks card once in a while. Or even just ask about them instead of always looking for updates about the child.
All moms struggle with losing their identity when they have children, but I truly believe it’s in spades for the special needs mom. Encourage her aspirations and interests, too. Let her know you see her for the veritable hero that she is, but also for the amazing woman she has always been.
Most importantly, don’t be afraid to ask specifically how you can help. I know it can feel awkward to not know how to care for a special needs child, and you don’t want to offend or even do something the wrong way. But, at the end of the day, whatever you can do to ease a burden, offer support, or love on a special needs mama extra hard will be worth its weight in gold.
Learn more about Allison and Mason on Facebook at 3 Mile Mom.
Donate to the STXBP1 Foundation.
If you have a friend who just received an overwhelming diagnosis for her child, check out our IGTV interview with Dr. Chris Lindblade from Phoenix Children’s Hospital on how to support a parent navigating learning about their child’s diagnosis.