Superkin is thrilled to have Melinda Martin, founder of Momme, the first lifestyle platform for parents raising kids with disabilities, join us on the blog. In her piece, Melinda shares parts of her story and how to best support loved ones who are managing a medical diagnosis.
Four years into motherhood we received my son’s Autism diagnosis. At that time, I was doing it all. Working full time, cooking, laundry, bills, navigating his sensory meltdowns and developmental needs, in addition supporting the medical struggles we were facing with my daughter, a 6-month-old at the time, whose traumatic delivery left her with silent aspiration, dysphagia and motor delays. Despite all my doing, I was making little progress as I tried to live up to the growing complexities of our family’s reality.
But one thing I wasn’t doing was talking about it.
As a nurse I thought I would be better at this. We had suspicions of his diagnosis, I knew the signs, but managing day to day I was not prepared for. I felt like I was the cause of our struggle, that I wasn’t doing motherhood right and that fear of judgment and shame kept me from sharing when, in actuality, I was parenting two kids with disabilities, and our reality was quite typical of families navigating the same.
As his needs heightened, we grew even more distant from those in our personal and working life as the added pressure of explaining to others what we didn’t even fully understand seemed like an impossible situation to be in. I didn’t know how to bring up our very heavy struggles when the topics everyone else was discussing were their babies’ milestones or fun family vacations which were far from relatable to our reality.
So I grew distant and weary, because at the heart of human nature is a desire for connection. Oh how those days would have been different if I felt open to talking, or if someone noticed the heaviness of my eyes and asked, but somehow my quiet smiles were always associated with “life must be good” so nobody ever asked or even suspected we were navigating raising two young kids with disabilities.
Something switched after we received his diagnosis and started to gain support and context around his behaviors. As I began to process and understand his needs and structuring life to meet those needs, I felt I had the capacity to begin opening up to others I knew.
But I was still nervous to do so.
I had a lot of fears thinking of sharing our reality.
Will they judge our child?
What if they become distant after I share?
What if they start gossiping to others and take my ability to share on my terms?
Eventually instead of worrying about what people may say or how they reacted, I started bringing our reality forward in conversations with friends and colleagues.
While some reactions were felt completely judgmental and layered with bias and ableism, the thoughtful responses more than made up for it creating a sense of camaraderie and support….and can I tell you how much easier it was to exist and do work when I could bring all of me to the table, which included our child’s ever evolving disability.
So now-I talk about it. Happily. I embrace the opportunity to share and bring the reality of our lives into another’s perspective.
Navigating these conversations can be confusing and are bound to be bumpy at times. Both for parents of disabled kids and those hoping to be a considerate supporter.
Along the way of work and motherhood, I’ve picked up some tips to empower others in creating thoughtful space for fellow parents raising kids with disabilities, because we all want the truths of our lives acknowledged, space to feel supported and a place to be heard.
Here are 5 ways to support a friend or colleague
Don’t be afraid to say disabled.
Especially when it comes to kids, special needs can feel like a softer term to use when talking about the heavy reality that is chronic medical conditions and disability. However, the truth is they have a disability and that is not a bad word. Sometimes, even parents of disabled children are on their own journey in navigating their language preferences. When in doubt, echo what they say or simply use the child’s name. Not every interaction has to be centered around their disability.
Don’t Assume PTO is Vacation or “Days Off”
Oh how I long for time off work to simply kick back and relax, but for my family and many others navigating a child with disability that is not the case. Managing a disability and the flares, takes time. Time for scheduled doctors’ appointments, intensive therapy sessions, imaging and unexpected sickness our kiddos are often more prone to. Last year ALL my PTO was spent on doctor’s appointments, procedures or time away to care for my kiddos when they needed extra support. The last thing after coming back to work after an emotionally and physically taxing hospital stay is hearing “so how was the time off” Ahhhh! Salt. In. Wound. All of this to mean-be mindful of what you say.
Check On Parents-Not Only Their Kids
It’s our human nature to want to check in on those who have a known area of need, but when was the last time you checked on your friend or colleague beyond asking how their child is. Raising kids with disabilities is taxing on our physical and emotional health. One study shows parents of disabled children are 2.2x more likely to experience anxiety and 4.4x more likely to experience depression compared to parents of a non-disabled child. We want someone to care about our wellness in addition to our child’s or simply just a moment to talk about our passions, interests, hobbies. Even chatting about the weather is a great change from having all conversations centered around the disability.
Do The Work Of Your Own Education
You have questions-we get it. But being responsible for everyone else’s learning of our child’s disability is exhausting and quite frankly-personal. Just because you want to know doesn’t mean we want to share in that moment. Rather than jumping in with a list of questions, first ask your friend “would it be okay if I asked you…” If it is a no, respect that. You can find out a lot of basics by doing your own research and it’s so encouraging as parents to know when others have gone an extra step to learn because they care that much!
Tangible Ways To Support Your Friend or Colleague
- Buy a food related gift card. After all, we are parents (not super parents) who are still executing daily activities and responsibilities of being mom and dad. The last thing we desire after navigating a sensory melt-down is making dinner. The best support is a gift card to a restaurant or DoorDash. Which has helped save my sanity on several occasions and gives me that time I would have spent making dinner to sit down a moment and process my day.
- Donate PTO. Parents of a child with a disability or who navigate their own disability spend a great deal of time managing their health needs. Often the given PTO isn’t enough to cover basic medical/educational/therapeutic needs. 4 Hours of donated PTO can go a long way to cover for both planned and unexpected needs.
- Encourage/Facilitate alone time for parents. If you’re a friend babysit. If you’re a colleague, find a non-profit who helps with respite care and pass the information along. We need time to decompress from the constant stress cycle unfolding in our bodies and process the many things on our plate. Plus a concert, movie or just drive through milkshake sounds like the perfect time away.
Melinda Martin is the founder of Momme, the first lifestyle platform for parents raising kids with disabilities. A mom of two kiddos, six and four, with developmental and medical disabilities as well as a woman who navigates her own. After not seeing her journey of motherhood represented, she has become passionate about inclusive marketing and disability representation in all its forms. She currently resides in South Carolina where she loves brunch on the weekends and staying active with her family.