[1]
We’ve Got This!
As parents of children with special needs, we have all experienced some degree of uncertainty and isolation in dealing with our child’s diagnosis. We had dreamed of going to Italy and landed in Holland [2]. So, we bought new guidebooks, and even began to enjoy the very special things about Holland. In the process, we built up a higher tolerance for the unexpected. You could call us veterans of adaptation.
Drawing on twenty-five years of experience counseling families like ours, Dr. Nancy Miller had a genuine understanding of this emotional journey:
“When you learned your child was going to have special needs, there was an interruption in the harmony of your world. All of your efforts
to find services for your child and to re-arrange your inner
expectation have been directed toward re-establishing a balance
between your inner and outer worlds. Harmony is adaptation. […] When
we reach a state of harmony, we feel like our lives are in balance, in
order, and there is a feeling of satisfaction.”
A few weeks into the pandemic, it became clear that the threat of COVID-19 would bring major disruptions to everyone’s daily life. For us veterans of adaptation, having already developed coping skills meant that we could focus
on doing what we do best: protect our children. When things did not return to normal, we adjusted; after all, we know what it’s like to be in for the long haul. We’re no stranger to patience and commitment: sticking to our children’s routines, diets, and therapies requires discipline.
Although we all need support at different times and in different ways, as veterans, we are in a unique position to share the strengths we’ve built through experience. If you have the capacity, think of one person in your community today – perhaps a friend, neighbor, coworker, or family member – that you can take under your wing. The lessons you have learned the hard way may very well be just what your “adaptation rookie” needs.
Know the Signs
Chances are your rookie could use an “oxygen mask rule” reminder: “Should the cabin lose pressure; oxygen masks will drop from the overhead area. Please place the mask over your own mouth and nose before assisting others.”
You may be seeing signs of oxygen deprivation in their life that they have not noticed themselves. The signs can be subtle, as Adam Grant, an organizational psychologist at Wharton, highlighted from his own experience:
“I wasn’t depressed. I still had hope. Wasn’t burned out, had energy.
Wasn’t lonely, I was with my family. I just felt a little bit aimless
and a little bit joyless. Eventually, I remembered there’s a name for
that feeling: languishing.”
Your special rookie may be isolated from their usual supports because of the pandemic. Let them know they are not alone!
An important note: if you suspect your rookie is in crisis, encourage them to seek help from your local crisis center, or text 741741 to reach a live, trained crisis counselor.
Acknowledge the Grief
The last two years have been full of unknowns and altered plans. As veterans, we are not strangers to assumptive grief – that ache we feel when we have lost those things that we believed were a stable or predictable part of our lives4. With the benefit of practice, we can recognize what we are feeling and keep moving forward.
Rémy Bellet, whose daughter, Louise, has Down syndrome, captured it beautifully in a letter he wrote to her when she was just two days old:
“On the ashes of our egos, we will grow a tree even more beautiful
than we could have dreamed. Life holds surprises. And even if it is
dark now, tomorrow will be bright. I know it.”
A rookie whose hopes and expectations are going unmet faces an intense emotional period. They will need to grieve for the loss of life events big and small. The things that didn’t happen aren’t all as profound as not being able to attend a memorial service. They can be foregoing a long-planned vacation or not going to the movies with friends. Whatever that loss of a social connection may have been, you should be careful not to diminish your rookie’s experience. Instead, you can lend an ear to help them process their emotions, reassuring them that the feelings of loss are normal.
Related: Dealing with Grief and Darkness [3]
Just like in dealing with special needs, waiting it out isn’t a solution. Veterans intrinsically know that it would be setting ourselves up for failure and missing out on life in the meantime. The reality is that as much as we idealize a version of “normal”, there is no going back to the way things were. There is a reason returning military personnel receive a mandatory return and reintegration brief, as Army veteran Adria Horn points out:
“Coming back from deployment is hard. You’re expecting it to be great.
You’re home again, this should be great! But the biggest feeling is
that things are different. The kids are different. Your favorite
restaurant closed, your pet died, and your softball team broke up. The
couch your partner bought while you were away is great—but it’s not
the couch you knew. Home isn’t normal, it isn’t as it was. Things
don’t meet your expectations, and you seem to have lost control, so
your return experience doesn’t feel good at all.”
You have had to cultivate new coping skills and adopt the mantra of self-care: encourage your rookie to make it a priority, too.
Harness the Power of Play
Play is important for the mental and emotional health of all ages. Researchers even suggest that engaging in creative expression can serve to buffer against the negative effects of living through the pandemic7. In other words, playing helps us adapt to an uncertain, ever-changing world.
Related: Play the Building Blocks to Success [4]
I asked Suzanne Wingard, Director of Training at Family Connection of South Carolina, to share her go-to creative activity:
“I had to learn new strategies on how to move other emotions out of
the way to uncover happiness. There is a fact that the brain cannot be
in a state of gratitude and a state of fear at the same time. Anyone
can start the art of gratitude. For me, using pen to paper journaling
brought me the most happiness.”
Play can take many forms. It’s about doing something that’s imaginative and in the moment. To help your rookie step outside of their comfort zone and find the freedom to experiment, consider compiling a shortlist of options and offering to participate with them. Fortunately, many are responding to the pandemic with innovation, creating new ways to connect and changing playtime for the better:
- Daniel’s Music Foundation hosts virtual live events for all ages and abilities, keeping all connected through music.
- Many chocolatiers have begun to offer virtual tasting classes – a fun way to discover new treats with the added mood-enhancing benefits of chocolate.
- When it’s time for a screen break, look to your local Parks and Recreation for inspiration. Park managers have designed new programs to help people get outside while still practicing social distancing, including activities to enjoy nature in their own backyard or neighborhood.
As you start to feel more connected to what’s happening in your rookie’s life, you will develop an even stronger bond with them. Somewhere along the way, you may just find that the support flows both ways! The mutuality of support is apparent in one rookie’s account of her relationship with her mentor:
“She just tries to help me out… If she’s having a bad day, I’ll try
to help her out… She’ll call me one week, or I might call her one
week. We just take turns calling each other and checking up on the
kids and the family… It makes me feel so good to help people because
that’s the way it should be in life –people helping people.”
If you adopted a rookie and found the experience rewarding, why not volunteer to share your strengths with even more people in your community? Many organizations rely on veterans like you to make emotional support calls to peers in need: Parent to Parent USA, Graham’s Foundation, the Amputee Coalition are just a few.
While we don’t know what the future holds, as you continue your journey parenting your child with special needs, you will always be a veteran of adaptation. Never forget that your resilience is a strength that you can share.
About Aurélie Brown
Aurélie has experienced firsthand the magic in the match of peer support after her daughter was diagnosed with a rare genetic condition at age three. As Co Executive Director for Parent to Parent USA [5], she is dedicated to strengthening the Parent to Parent community so that no parent feels alone, ever.
References
1.Perl Kingsley, Emily Welcome to Holland
2.Miller, Nancy B. Nobody’s Perfect: Living and Growing with Children Who Have Special Needs. P.H. Brookes Pub. Co., 1995.
3.Grant, Adam How to stop languishing and start finding flow. TED, https://ed.ted.com/lessons/how-to-stop-languishing-and-start-finding-flow-adam-grant [6]
4.Rémy Bellet Louise and co. Facebook, https://www.facebook.com/extralouise/posts/4945406465481567 [7]
5.Oregon Department of Human Services, Acknowledging Loss during the COVID-19 Pandemic. Oregon.gov [8].
6. De Smet, Aaron and Horn, Adria A military veteran knows why your employees are leaving. McKinsey Quarterly, https://www.mckinsey.com/business-functions/people-and-organizational-performance/our-insights/a-military-veteran-knows-why-your-employees-are-leaving [9]
7.Singha S, Warr M, Mishra P, Henriksen D; Deep-Play Research Group. Playing with Creativity Across the Lifespan: a Conversation with Dr. Sandra Russ. TechTrends. 2020;64(4):550-554. doi:10.1007/s11528-020-00514-3
8.Suzanne Wingard The Science of Happiness through the Art of Gratitude. YouTube, https://youtu.be/nVZy_PFkPq0 [10]
9.Santelli, B., Poyadue, F. S., & Young, J. L. The parent to parent handbook: Connecting families of children with special needs. Brookes Publishing., 2000.
https://www.parentingspecialneeds.org/article/handling-childs-diagnosis/
https://www.parentingspecialneeds.org/article/coping-life-never-imagined/
You May Also Like
- Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves [11]
- A Complete Guide on Positive Behavior Support for Children With Special Needs [12]
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs [13]
- How to Get Free From Unrealistic Expectations of Motherhood [14]
- Father’s Perspective: Raising a Child with Special Needs [15]
- Daddy Loves You: A Reminder for Daddies of Children with Special Needs [16]
- I Do Not like Being a Special Needs Parent and That’s OK [17]
- Being United, Pampering, and Taking Care of Ourselves [18]
- Coping with the Life You Never Imagined [19]
- “Coping” One Day at a Time [20]
This post originally appeared on our March/April 2022 Magazine [21]