10 Must-Dos for Moms of Kids With Special Needs

785
785
0

One of the most important things we can do to be successful and effective parents is to take time for ourselves. Sometimes moms make kids and spouses top priority and only then consider something for ourselves, if there’s time. (And there’s never time when you have kids. Never. Ever.)

If you’ve ever been on an airplane, you know the speech about putting the oxygen mask on yourself first in an emergency before helping anyone else, even before helping your child. Why is this? It sounds like a selfish act, but it’s actually not. If you run out of oxygen while helping others, you won’t be able to help as much as you’d like, and you may not make it yourself to help anyone ever again.

The same applies to motherhood.

Society has programmed us to think, What kind of mother is she, taking care of herself before her child? but that’s completely wrong.

Grab that mask and put it on! It takes determination and learning to say “no” sometimes, but you can take time for yourself. Permission granted.

Here are my 10 musts for mom self-care:

1. Make time for a hobby or another activity you enjoy at least once weekly. Creative ventures will nurture your soul.

2. Do something relaxing that is purely for yourself. Go for a walk alone or spend time reading a book (not about parenting) each day. Make a bubble bath part of your nightly routine.

3. Focus inward. Practice mindfulness for 10-plus minutes each day. This can be done anytime, anywhere.

4. Give yourself a break. Hire a cleaning person to clean your house regularly, or a landscaper to keep your gardens weed-free. You can even hire out laundry! You do not have to do it all!

5. Pamper yourself. There are dozens of spa treatments you can do yourself, at home. (I have a Pinterest board full of them.) Or go to a spa if you have the time and funds. You are worth pampering! 

6. Set boundaries and learn to say “no.” You are not superwoman — you can’t do it all. Taking time for yourself will actually afford you the energy to do well for others.

7. Connect to others. Support is so important when parenting a child with special needs. Reach out to ask for a break. Connect with others walking a similar parenting journey. Go to a support group. Have a monthly girls’ night out. Make time for connecting consistently and frequently.

8. Take care of your body. Feeling great about yourself will model healthy self-esteem for your children and positively affect your mental health. Schedule time for exercise and make healthy (and mindful) food choices. You are worth premium fuel, don’t you think?

9. Pay it forward. Helping others is good for our own mental health and well-being. It is also a great example for our children.

10. Visit your happy place. This can be in your mind or for real. Turn on music that transports you or makes you feel vibrant and alive. Burn a scented candle that reminds you of the beach. Draw a bubble bath and lock the bathroom door. Tour your favorite gardens. Read a good book. Indulge in some retail therapy. Eat chocolate. Drink a glass of wine. Once a year I attend the Happy Mama Conference & Retreat, a weekend of respite for moms of kids with neurodevelopmental disorders.

The bottom line is, moms must steal time for themselves whenever they can, even if it’s taking an extra five minutes in the bathroom. A few moments of peace can be refreshing, and you are totally worth it!

A version of this post originally appeared on pennywilliamsauthor.com.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

The Mighty finds strength, joy and beauty in people facing disease and disability. Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

 Lead photo source: Thinkstock Images

785
785
0

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Why I Don’t Embrace My Disability as a Fundamental Part of My Being

328
328
0

As a kid, I was never made to feel “different,” despite the visual evidence to the contrary. I’ve always attributed that fact to my parents pretty much being “kids” themselves at the time of my birth. My mom and dad were 22 when they had me. They had my sister at 24. If I were them, I’d have two children by now (I’m 25). I can’t even imagine it. Sometimes I can barely manage to feed myself. OK, that may be a bit of an exaggeration, but still… Throw in a cerebral palsy diagnosis you’ve got yourself a challenge, especially for first-timers.

Not that I have any personal experience, but parenting seems like a tough gig. I imagine finding out that your son wouldn’t lead the life you’d hoped is particularly earth-shattering. My parents, however, never demonstrated such thoughts. As I grew, neither they nor any of my relatives treated me as anything other than a growing child. Period. Despite my functional differences, “disability” didn’t enter the narrative of my young life, and that mindset has followed me into adulthood. I was able to experience most everything other children my age experienced, albeit in a slightly modified way. Sure, I realized I experienced life differently. But doing things differently and feeling ostracized represent entirely separate states of mind. For all intents and purposes, I grew up without a disability. Many individuals I meet embrace their disability as a fundamental part of their being. I never have.

When I explain that to people, I often get quizzical looks that invariably communicate “How can that be possible? You live your days in a wheelchair!” That question, whether asked directly or inferred, demonstrates a form of stigma inadvertently propagated by people with and without disabilities. I’ve found that there are great number of people out there who think it is an absolute necessity to function within the societal perception of disability. Now, I recognize that barriers actually do exist. You’ll never see me playing in a pickup football game. My statement refers to the seemingly widespread idea that disability absolutely needs to be part of a disabled person’s identity. For me, it doesn’t.

I’m not naive or delusional. I don’t stubbornly refuse my CP exists. I am simply a person with a disability, not a disabled person. I see no limits. I live my life day by day like everyone else. I buy groceries, hang out with friends, and pay my rent. The way I see it, I only differ from other people in the methods I employ to accomplish these tasks. I might hang bags off my chair or use Peapod to get my food. I find bars or restaurants I can access to maintain the social life I’d prefer. It’s more work for sure, but the independence to lead the life I want is worth it.

At the end of the day, everything boils down to a simple choice: I can make cerebral palsy the reason for life’s difficulties or I can forge ahead despite the challenge. I’ve learned to ignore the word “can’t”; the activities cerebral palsy prevents me from don’t really matter to a successful life anyway. You don’t really need to climb trees or jump rope.

I believe that no matter what the disability, be it physical, mental or otherwise, we are all humans. We have hopes and dreams, needs and wants. We have all this before disability is factored in. I don’t try to erase my disability out of shame. I don’t hate it. I just don’t want it to be attributed too heavily to my person. Cerebral palsy represents what people see, not who I am.

anthony oberg the mighty

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

The Mighty finds strength, joy and beauty in people facing disease and disability. Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

328
328
0
JOIN THE CONVERSATION

How ‘Inside Out’ Helped Me Understand My Grief

810
810
3

I’m not a movie critic, and this isn’t even an attempt at a movie review. And spoiler alert: I’m not going to try to not spoil this movie for you. I just want to tell you about a family who went to see “Inside Out” together.

“Inside Out” (Photo courtesy of Disney/Pixar)
A scene from “Inside Out.” (Photo courtesy of Disney/Pixar)

The characters that you see above are Anger, Disgust, Joy, Fear and Sadness. They live inside Riley’s head.

As the film begins, we meet Riley as a little girl who grows up reaching childhood milestones, loves hockey, develops sweet friendships and has a wonderful family life. Then she finds herself moving across the country with her parents where everything is new and different. The film’s focus is the emotional upheaval that the move has on Riley. However, the setting of the story takes place less in Riley’s world and more inside her head.

Inside her mind, we’re introduced to five main characters: Anger, Disgust, Joy, Fear and Sadness. They operate a switch board that acts as Riley’s “brain-control board” so to speak. They take turns at the board, providing emotions for Riley’s experiences. 

But as I mentioned earlier, this isn’t a movie review, and I’m not even going to attempt to break down the whole story line.

Here’s what I want to share with you about the power of this movie: “Inside Out” helped me understand my grief.

It has been 10 months since our sweet son, Mattie, passed away, and his passing has left our family feeling a barrage of emotions. Grief is a crazy beast. There are many days when I feel like juggling the emotional rampage is more than I can bare, not only within my own heart and mind, but in helping to carry my children through it as well.

In the movie, there’s a scene where Riley is distraught about all that she has lost in the move: friendships, activities that were important to her and the security of the familiar. Sadness takes the controls, competing with Joy who is trying to help Riley remain her happy self. Joy tries to keep Sadness away, not wanting to see Riley feel so sad. At one point, Sadness and Joy are both suppressed, leaving Anger, Fear and Disgust as the primary controllers of the “brain-control board.”

Grief is just like that. As Joy becomes further and further removed from the control system of our minds, Sadness tries to express itself. But often, it’s Anger and Fear who take the front seat.

As someone I know and love recently said, “Anger is simply a cover for Sadness. It pushes Sadness away because Sadness is more painful to feel.”

I’ve seen this battle in my life, in my husband’s life and in my children’s lives. Anger covers up Sadness and pushes it to the background. Because, let’s face it, Sadness is a heavy load. I’ve wrapped my arms around a raging child and tried to help him get to the deeper root and see Sadness hiding behind the Anger. I’ve watched as screaming and kicking gave way to weeping.

As the movie comes to a close, Joy comes to an understanding of how important Sadness is in Riley’s life. She discovers that unless Riley is allowed to feel the sadness of this big change in her life and express it to her parents, Joy will never be able to return.

So as Joy and Sadness return to the control board, they are united. Joy places Sadness’ hand on the board, allowing Riley to step out of a place of Anger and express her true feelings to her parents. As Sadness is released, Joy then places her hand over Sadness’ hand, and Riley is able to experience the unique ability of the human spirit to feel both Joy and Sadness simultaneously.

The same thing has happened in my life. I can recount beautiful, miraculous and joyful moments with my sweet boy, and, at the same time, feel the sting of Sadness, knowing that memories are all we have left now.

So my friends, whatever pain and grief you may hold, Anger isn’t bad. Feel it. Acknowledge it. It’s OK. But as I am learning, and as I’m teaching my children, never let Anger push Sadness to the background for too long.

Joy comes in waves. Sadness comes in waves. And at times, one is more intense than the other. But at other times, they wash up against us with the same steady rhythm hand in hand.

A version of this post originally appeared on From the Heart.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

810
810
3
TOPICS
,
JOIN THE CONVERSATION

I Thought My Job Was to Speak for My Child. Then I Heard This.

340
340
0

I used to believe that my job was to speak for my child.

I did not yet know that it was really to listen.

To listen to her.

To listen those who experience life through a lens more similar to hers than mine.

To listen to those who know what it’s like to see what she sees, feel what she feels, know what she knows.

When I listen, I hear the same refrain again and again.

Don’t try to change me.

(It won’t really work.)

Love me.

(Love me not for what I might one day be but for who I am right this very second, right here, right now.)

Love me not by trying to wedge me into your vision of what it means to be human, but by respecting my experience of being human.

Protect me.

(Protect me not by teaching me to camouflage myself but by instead helping to create a world in which I no longer need to hide to survive.)

Protect me by showing me how to love myself, believe in myself, value who I am as I am.

Protect me by showing me that I am not alone — that there is a vibrant, diverse, beautiful community awaiting me with open arms — waiting to guide me, to support me, to welcome me home.

Show me.

(Trust that I’m watching.)

Show me that you value my community.

(Celebrate my extended family.)

Show me that their opinions matter to you.

Show me that you will never let your voice eclipse theirs … ours.

Show me that you’re listening to them … us … me.

That’s what I hear when I listen.

So that is what I will do.

The image is a photo from 2008 of my daughter, Brooke, at age 5, whispering in her daddy’s ear.

This post originally appeared on A Diary of a Mom.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

The Mighty finds strength, joy and beauty in people facing disease and disability. Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

340
340
0
TOPICS
JOIN THE CONVERSATION

I Had Questions After Her Autism Diagnosis. One Answer Stood Out.

464
464
2

This week we received a diagnosis of autism for our daughter, Jenna. Last year it was ADHD, the year before ear problems and before this hearing issues.

This has been a five-year journey of experimentation, failings, labels and stereotypical comments. She’s been labelled “naughty, loud, weird,” and we were constantly told by her school: “You need to get her checked out,” “There is something wrong with her” and “Have you considered testing?”

Glasses prescribed, hearing tested, IQ tested, and so on, with each specialist sending detailed reports on how to help her.

But still the label “naughty, misfit, failure, loud” were how people viewed her.

We just know her as Jenna.

This week as I sat and pondered what this diagnosis means to us as a family and to me as a dad, I was at a loss.

After I felt like I got it wrong for the past five years, I asked myself these questions:

  • Did that lesson my abilities as a Dad?
  • I missed the signs for Jen; what else have I missed?
  • What did I do wrong?
  • Why did I miss all the signals?

I soon got over myself and came to this understanding: the girl I know as Jenna is still the girl I adore.

As I began the road to discovery, I began asking myself, and for that matter anyone who would listen, these questions:

  • Where does she fit on the spectrum?
  • What have I missed?
  • What treatment is needed?
  • What do I need to change?
  • Have I made the problem worse?
  • How do I shut up the skeptics?
  • How do I embrace her uniqueness?
  • Does she need “the label”?

Putting all the rules, diagnosis, stigma, and people’s comment aside, I can come to a conclusion: Jenna is Jenna, and Jenna can be Jenna, and no label will change that I love my Jenna.

She is unique and different, and honestly, will likely find it difficult to fit into cultural norms for a long time. The diagnosis of autism spectrum disorder (ASD) can’t change that.

I can’t change my daughter not being able to read social cues correctly.

I can’t change the fact that creating friends might continue to be a challenge for her.

I can’t change her being the most literal person I have ever met.

But…

Jenna is Jenna, and Jenna can be Jenna, and no label will change that I love my Jenna.

If I could make a wish and dream big for Jenna, it would be very simple: I want people to value her, laugh with her and embrace her uniqueness.

Just like every one of my four children, she has the potential for greatness. A potential to change the world. I just pray that everyone, like myself, sees the greatness that is my 9-year-old ASD kid — or as we know her at home, Jenna.

A version of this post originally appeared on My ASD Princess.

The Mighty is asking the following: What’s one source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

The Mighty finds strength, joy and beauty in people facing disease and disability. Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

464
464
2
TOPICS
JOIN THE CONVERSATION

The 3 Things I Do When My Anxiety Comes Back

533
533
1

Any of you anxious peeps will know that when anxiety comes to visit, it’s hard to get things done. Tasks that are normally super easy and short become complicated and drawn out. Decisions take longer to make, and your head and your whole being becomes wobbly and noisy.

It’s vital that you seek help for anxiety and that you learn to manage it as best you can. So what do you do when that old friend is in town? Well, here are three things I do when my anxiety comes back:

1. Accept it. My goodness, this one is hard, isn’t it? But it’s not going to go away just because you are willing it to. You have to accept it.

Two years after I was diagnosed, I spent several intense and exhausting months workshopping acceptance with my psychologist. I hated it because I had to really deal with some feelings and, well, feelings. Plus, I had to be comfortable with my life the way it was. Without changing it. Just accepting it as it is. But once I got through the tough parts, I felt heaps better. So when anxiety comes back to visit, I accept it quickly and acknowledge that, yes, my unwanted bed fellow is indeed present.

Acceptance doesn’t mean merely to tolerate but to embrace life. It literally means taking what is offered. So let it in. I don’t always want to let anxiety in, but when I do, I’m without a doubt calmer. This doesn’t mean that I like where I am right now (I’d love to be even more free from anxiety) nor does it mean that I intend to stay in this space, but if I more freely accept the reality of my situation, I have more of a chance of being able to take action to change it. Acceptance of the here and now is key to this for me.

2. Empty my head by writing things out. I recommend starting to write lists. Even if you aren’t a list-maker or even if you don’t want to adhere to a list, it might help to get that noise out of your head and onto a piece of paper. Sometimes it seems less stressful when it is on paper. The inside of your head can get filled with so many other emotions and little thoughts that the enormity of what actually needs to get done becomes completely overwhelming. So write it down. Get it out. Let it out.

You can also meditate to help empty your head, and this is especially powerful after writing a list. Try the Smiling Mind app to guide you.

Anna Spurling the mighty

3. Give myself time. Then I move on. When I’m having a particularly gray period, I have a little chat with myself. I highly recommend you do this somewhere private because people will look at you oddly if you are just chatting away with yourself over your latte. Once I kind of get an understanding of what’s at the core of my worry and unrest, I give myself a set amount of time to deal with it. I may decide that I can have a day to wallow (this is a guide and is completely fluid, depending on your own head space) and then two days to take action on it. After that, I try to move on and put it behind me.

My management of mental illness requires a great deal of resilience. It is often challenging and always exhausting, but if in the end I feel better, it’s worth the discomfort of a bit of acceptance, list-writing and time.

A version of this post originally appeared on Colour Me Anna.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Want to end the stigma around mental illness? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

533
533
1
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.