March 2019 | GRIN2B Foundation

By Liz Marfia-Ash, President & Founder of GRIN2B Foundation, Parent Advocate

Prepare yourself for a deep dive into the varying ways some of us in the GRIN2B community are taking care of ourselves (or not really taking care of ourselves).

When the members of the GRIN2B Foundation Board met to plan our 2nd GRIN2B Awareness month, we brainstormed additional topics to cover other than just sharing GRIN2B facts and pictures of the kids. We noticed there had been some recent talk in our community about both self-care and our biggest fears as our kids get older. Not exactly sure where these questions would lead, we created a survey for the GRIN2B parent community. 70+ people answered our question about self-care.

Not shockingly, we’re not doing all that much when it comes to taking time out for our mental health.

We had a multiple choice question with 11 options for self-care. Parents were able to check off however many applied to them. Here are those results:

Support group, online (39%)
Exercise (39%)
Friends who can relate (30%)
Hobby (27.5%)
Respite care (26%)
Therapist (20%)
Massage (16%)
Support group, in person (8.7%)
Read self-help books (5.8%)
Mediation (5.8%)
Essential Oils (5.8%)

Additional write-in options were: Taking walks with the dog, baking, paint/illustrate, listen to music, books/tv series, talk with family and colleagues, take cbd oil, travel, work with special needs children, golf, tennis, wine, nature, retail therapy, nail & hair appointments and a few said “nothing.”

After looking at these results, I thought it would be great to hear more in depth from families. What were they doing specifically and why did they choose that? What is self-care anyway? We asked on social media for a few brave individuals to share their stories with us. To be honest, I wasn’t sure anyone would respond. I received a submission right away from an amazing Mom named Zoe. Her story (which will appear towards the end along with a few other stories) was all about the wonderful advocacy work she is doing at her daughter’s school, in her community and in organizing the European GRIN2B conference.

I excitedly shared her story with my husband, and he looked at me like I was crazy.

“Everything she’s doing is amazing, but that doesn’t sound like self-care. That all sounds stressful.”

“It is self-care,” I insisted.

I explained that being an amazing advocate is her form of self-care. I certainly can relate to that. My husband reluctantly agreed, but still seemed unconvinced. I thought about this conversation all day and here are the conclusions I finally came to.

Self-care is different for everyone. It’s very personal.

And the biggie…

Self-care is work!

It’s not as simple as just setting aside time to relax and do something fun (though it totally can be if that’s what you need).

But in large part, self care is a choice. And. It. Is. Work. It is work to carve out any time in our intense schedule of dealing with the complexities of caring for a child with a very rare disorder. It is work to ask for help. It is work to find a therapist or a support group or respite care.

For many of us raising kids with complex needs, we can’t necessarily just hire the average teenage babysitter. We need qualified, trusted caregivers. As my daughter gets older, this gets trickier and trickier for us. We have trusted family members who can babysit, but we’ve been saying for ages we need to take the time to properly interview people who are skilled at caring for kids with disabilities. My problem is less that I can’t afford qualified childcare (though I’m not exactly rolling in piles of dough here) and more that I do not have the time to interview people. (Shameless cry for help – if you know someone or are someone qualified to care for my daughter (and her two crazy brothers), message me, please!) We live in Illinois where respite care options are slim to none. If you are lucky to live in a state or a country that provides respite care, I highly suggest you take advantage of it. Of course, this is assuming the respite care program is well-run and well-funded and the workers are people you can trust. Unfortunately, we know all too well that just because a program exists, doesn’t necessarily mean you can trust it.

I am especially aware that however hard it is for myself and my husband with our limited childcare choices, at least we have each other to rely on. We often take turns watching the kids so the other one can leave and take a break. I know there are single parents out there that this is doubly hard on. I wish I could say I have the perfect solution for all. Unfortunately, no one is going to magically fix this problem for us. Whatever our circumstances are, we have to think outside the box and find ways to take care of ourselves. Be brave, ask everyone you know and everyone you don’t know for help and suggestions. And, if you don’t get answers, wait a while, ask everyone again or keep looking for new people to ask. Just don’t give up.

But back to my original revelation – self care is work and that’s why most of us aren’t doing it! We’re just too dang exhausted to take the time to make a plan for this.

For my crazy workaholic life, I can’t easily just set aside time each week to take a bubble bath and read a book or get a massage. For me, it’s a LOT of little things I started doing over the last few years that have a cumulative effect of keeping me relatively functional.

Here’s what is working for me:

Since 2015, my husband and I have been attending a monthly Parent Support Group. From the moment we found out my daughter was not meeting milestones and we started making the rounds with multiple specialists, I started searching for a support group we could join. As we were undiagnosed at the time, there wasn’t anything I could easily find. I spent the better part of a year hounding every doctor or therapist, googling support groups, emailing people to find a group only to come up with nothing. Finally, one day, my husband and I ran into a therapist who had evaluated our daughter early on, and she recommended a group to us. We started going and haven’t stopped! We’ve made wonderful friends with other families in this group. It’s been truly life-changing.
I have a diverse group of local girlfriends who are all parents of children with different types of disabilities. They get it, they really get it. We all support each other and enjoy girl’s nights out. We also take turns hosting playgroups. It’s such a relief to go to a group playdate with people who totally get what it’s like raising a kid with a disability.
I see a therapist 1-2 times a month. Ideally, I’d go once a week, but the therapist I ended up picking has very limited availability and, truthfully, I do too. So, best case, I go two times a month, but mostly due to my crazy schedule, it’s once a month. Could I get a new therapist who’s more available? Sure, but this is actually my 2nd therapist and I like her and she gets me and I kind of don’t really want to start over. My story is long and tiring to tell. The 1st therapist I went to was not a good fit so I quit going and then it took over a year to get back started up with a new one because, well…life.
I try to go to Pilates once a week. This is truly the only form of exercise I enjoy.
I have become a bit obsessed with inspirational quotes – especially ones from Brene Brown, J.K. Rowling, Maya Angelou and Ralph Waldo Emerson. I have bulletin boards at work and at home with quotes on them, and I stop and read some of them almost every day. I also love inspiring quotes on my shirts, especially the ones from The Gwendolyn Strong Foundation, Everykind and our Awareness shirts as well! One quote I fall back on a lot is from the movie (and book) The Shawshank Redemption – “Get busy living or get busy dying.” It’s a little trite, I know, but thinking of this quote is really the kick in the pants I need some days. Do I want to sit around and feel sorry for myself and just give up, or do I actually want to just move forward? Onward and upward!

We signed up last Fall for a grocery delivery service – this has been a GAME CHANGER for us! We use Shipt for Target, but there are so many options out there. As a working mom, this is such a time saver!
I listen to music constantly. My daughter loves music, but is nonverbal and can’t really tell me what she likes. But we can tell by her demeanor if she likes a type of music. So, I act as her personal DJ often, trying different types of music out to see how she’ll react. Music is our go-to when we don’t know what’s wrong – we’ll turn on some uplifting music and have a dance party. We’ve had a lot of dance parties to “This is Me” from The Greatest Showman.
Writing is a really wonderful outlet for me. I’ve always loved writing and it’s been amazing to contribute so much to the Foundation. I don’t go anywhere without a notebook to jot down random thoughts, ideas, future blog posts, etc. Next up, I need to find time for more of my personal writing projects.
I love reading, but honestly don’t get to do it too much for pleasure these days. Most of my spare moments during the day are spent reading articles or blog posts related to disability, rare disease, nonprofits, AAC, genetics, etc. I might read a few minutes before I go to bed. I have a stack of articles to read and self help books on my nightstand, but usually need something light to read before I fall asleep. I usually just end up re-reading a Harry Potter book for the millionth time. Taking book recommendations!
- Reading sub-topic: I was lucky that pretty early on in this journey, I stumbled across some amazing bloggers that helped form my views on disability and parenting a rare child. Some of these blogs were written by mothers of kids with all different types of disabilities and through reading their blogs, it led me to some pretty life-altering blogs written by people with actual disabilities. Hearing from the disability community itself is something I highly recommend! These perspectives taught me about important concepts that I had never heard of, such as ableism and presuming competence.
This one’s still a work in progress, but I’m working on limiting my social media time. Between Facebook, Instagram, Twitter and numerous email accounts, I often feel glued to my phone or computer. Social media is amazing for many reasons, but sometimes the constant barrage of information and connections overwhelm me and I need to take a step back so I can be more present in my life. I now limit some of the notifications I receive on my phone.
As Mary J. Blige sings, “No more drama!” It’s not always possible, but I try to be really conscious of allowing people with negative energies access to my life. Sorry, not sorry. I have a low tolerance for drama, even if it’s tangential. I limit my access to drama as much as I can and seek out people with positive attitudes.
My most critical mind-shift has been to try very hard to limit my pity parties to no more than one day. If my thoughts are spiraling, I might wallow in it for a day, but then I move on the next day. I realized pretty early on that focusing on the perceived negative aspects of my stressful life do not serve my daughter, the rest of my family or me at all. I make a conscious effort to choose joy. The only way I have been able to achieve this is to surround myself with positive messages (the aforementioned quotes, music, books and positive people).

The list above notwithstanding, keep in mind there are many, many things I am not doing, such as getting enough sleep, eating well, figuring out how to alleviate the chronic back pain from carrying my daughter around so much that has been slowly getting worse over the last year, keeping up with personal doctor’s appointments (see previous back pain comment), cutting myself some slack, going on date nights with my husband (this is mainly due to not having enough babysitters), going on vacations (what are those?) etc. Sigh, self-care is a process. And I’m exhausted from taking an honest look at all the things I do to take care of myself. It wasn’t until I asked this question and did some self-reflection that I realized the extreme effort I was putting in.

As I mentioned in the beginning, self-care is different for everyone.

We asked families in our #GRIN2B community to tell us what they were doing to take care of themselves and received submissions from two Moms, one brother and one Dad.

Thank you to Zoe, Tanja, Campbell and Phil for bravely sharing your stories with us.

By Zoe Costello, GRIN2B Mom, England

As a mother of a child with complex needs, the world you find yourself in is not the one you expected. Friends disappoint and disappear and you find yourself struggling with some of the hardest choices in life, pretty much on your own or maybe with a partner also struggling with the same thing. I am a fairly strong minded person, but I’d also done work experience with disabled children in a previous life and knew I did not have that vocation and thought I’d never cope.

How I’ve survived (and I’d like to think thrived!) is by being involved in my daughter’s community. I’m a volunteer governor at her school, so have strong links with the senior management team and I attend and now run a parent support group from the school so have strong links with the parent liaison officer and other parents. I also meet up with other special needs parents from my home town on a regular basis and I’ve now started to get involved with our local authority to become a parent advocate for our children. To top that off I’ve been fairly heavily involved with the GRIN2B community, helping to organise a European conference and keep connections between different people and organisations. All of this, whilst helping to keep me busy also gives me the knowledge I need to best support my daughter and has given me a group of different support networks, in my hometown, in school, and worldwide online. There is now always someone there on the end of the phone or messenger or Facebook to help and advise. I’ve learnt so much and more importantly am no longer alone, far from it!

By Tanja Vinther-Bjerg, GRIN2B mom, Denmark

I have become a triathlete. I have always been running and seen it as therapy where my thoughts could just fly away. Just mile by mile (kilometre by kilometre in Denmark).
In Denmark, we are fortunate to have a system that in our case offers help – so Noah is attending special school and every other weekend and 2 weeks a year he is in an institution where he loves to be and we can be a family without always having to deal with his needs. This and the fact that we schedule everything in a common calendar gives me the time to train alongside with my 40 hours a week job. And I love it and got my husband and Noah’s little brother onboard also. My big goal is Copenhagen Ironman in August. And I feel great, we embraced the help we can get and the fact that Noah loves his institution gives us peace of mind to follow our dreams and do the things we love.

I started last year and fulfilled a Half Ironman in 5 hours and 18 minutes + a lot of 1/4 distances. And I am hooked, on the training, the races and the fellowship in the tri-club we joined as a family. I do runs with my youngest and train in the mornings and evenings. It is a coordination, but so worth it even though we often see each other in the doorway. I know we get breathers without Noah and we would absolutely die without this. I get more energy by using energy.
Who knows? The dream is to qualify for Kona one day. Believe in your dreams and sometimes they actually happen.

By Campbell, age 13, GRIN2B sibling, United States

I am a brother to someone who is affected by GRIN2B mutation. Life with someone affected by this disorder can be stressful, so you must have something that you do regularly to take care of yourself. Many people, for example, meditate, read, and watch stuff, among other things. Personally, I work out and play sports for my high school, joke around with my friends, play video games, you know, typical teen stuff. Many people do not realize the importance of even the daily, menial things in their lives, as those can make an enormous difference. Stress is hazardous to your health, and you should attempt to alleviate it, as it slowly accumulates and affects both your mental and physical health. People affected by a GRIN2B mutation should be cherished and loved, and given your utmost care, no matter how stressful and hectic life may seem.

By Phil Ash, GRIN2B parent, United States, Illinois

I know I do not do enough for myself or focus enough on my self care. I’m sure I’m not alone in this. My busy life and schedule does not really allow for much “me” time, so I try to find little moments throughout my day. I’m blessed with a job that I love and that gives me a lot of fulfillment. I teach high school students radio, television, and film. The job is stressful, it’s long hours and it’s hard work, but I love it. The moments of “me” time occur when I get to be creative and produce a video content for the school. The creative process, from writing, filming, editing and the satisfaction of sharing it to the school community is very fulfilling. In terms of more traditional relaxation, I enjoy listening to sports talk radio and podcasts whenever I can. I’m a fan of the Chicago Cubs and the Chicago Bears. During football season, I watch every Bears game and block out those 3+ hours. In the summer, I’m an avid golfer and I try to go at least once per week during the summer. Usually, I go during twilight hours, after I’ve helped feed the kids dinner. I also enjoy playing guitar and I’ll pick it up for 5-10 minutes, whenever the mood strikes. All in all, I think we all want more self care time, and I know I can use more. Since I became Lucy’s father, I’ve made more of an effort to make the above things a priority. Most of them require little self-sacrifice or sacrifice from my spouse. I think self care for special needs parents is possible if we all undergo a bit of a mind shift. I’m trying to stop thinking “oh, this might be nice if I was able to do this,” to “I need to make this happen for myself so I can be at my best for my family.”

For those reading that are the parent of a child with a GRIN2B variation (or maybe parent to a different kind of rare child), I hope you have come to realize one of the following…

You are actually doing quite a bit to take care of yourself.
You need to do much more and you’ve got some ideas now.
You need to do more, you’re still not sure what to do, but you’re determined to figure it out.

And if you feel inspired and want to share your stories with us, let us know. We’d love to continue to feature brave stories of self-care from our community members.

Now, indulge me for a few more minutes and read this one last part. If you know me, you know I’ve always got more to say.

Talking about and acknowledging our lack of self-care is really important, but we have to keep it balanced. Yes, there can be tremendous stress placed on parents, caregivers and siblings of those with disabilities, and all our feelings absolutely need to be validated. But the truth is…it is so much harder for the people living with disability.

Us able-bodied adults and children have the luxury of being able to communicate our feelings and have empathy reciprocated back at us. We can ask for help easily. For kids and adults with limited ability to communicate, they may have no way to properly or easily process those feelings. And from having two neurotypical children, I can tell you that all children need A LOT of help processing and properly navigating their feelings.

All I’m saying is we have to be careful we don’t share too much of our hardships that it comes at the expense of our children’s dignity. It’s a fine line. I don’t pretend to be an expert on not crossing this line. I just try to be aware of it constantly.

Want to read about more self-care strategies? Check out the following links.

The Most Courageous Self-care Act: Learning to Say I Need Help by Shelly Tygielski

The Isolation I Feel as I Parent Kids With Disabilities, by Laurie McLean, featured on The Mighty

10 Ways to Set Yourself Up for Success, featured on Everykind blog

And check out this free resource to help you gather info about your child for respite care providers:

https://www.childneurologyfoundation.org/programs/respite-care/