5 Things That Matter More to Me Than How Smart My Children Are

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“My niece was born premature, but she is smart as a whip.”

“They told my friend her son was going to have Down syndrome, but he was born totally normal and is just so smart.”

“My daughter struggles to gain weight, but is seriously smart.”

There’s a big emphasis in society about being smart, and as a mother with a child with Down syndrome, I pick up on these sentiments a lot — more now than before my daughter Phoenix, that’s for sure.

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And while there’s nothing wrong with being smart, it’s the emphasis on it as a source of pride that rubs me the wrong way.

I used to proclaim Phoenix’s accomplishments as if they were badges of merit. Sitting at 9 months, walking at 22 months, good speech and sign language, sight-reading at 3. Things she earned that became a collection of milestones that made her life worthwhile. Accomplishments that said “See? Look what she can do, even with Down syndrome!”

There’s a mindset that can develop as a parent of a child with an intellectual disability — one where we feel the need to defend our kids’ existence. Where we need to justify why our child’s life has meaning and value and worth — even though they aren’t smart or have medical conditions or require surgeries. We think that without the presence of the intellectual disability, people would not wonder if our children’s lives held value or worth.

If I was brutally honest with myself, I’d admit that I used to think like this too. I thought, “Life is hard enough without having to live with a cognitive disability.” I used to think I would definitely, 100 percent, terminate a pregnancy with a child with Down syndrome. No question.

I didn’t bank on the faith or support of my boyfriend (now husband), who, despite a chance of Down syndrome, felt in his heart this baby was loved and wanted and was going to be good — Down syndrome or not. That whatever happened, it would be OK.

It wasn’t OK for me. It wasn’t OK for a long time. But it is now. Turns out, I had a lot of work to do on myself, my preconceived ideas, my beliefs, my values and my understanding of worth. Of what constitutes a life worth living. I had to reconsider how important it was to be smart when balanced with all kinds of other attributes that humans possess: compassion, joy, kindness, understanding, affection, acceptance. Attributes I truly want to pass on to all my children, attributes which possess an importance that moves beyond being smart.

I’ve come to see that I don’t need to defend Phoenix’s life. She’s brought so much to just my world; it’s hard to fully describe it. This child made me a mother. She’s made me grow, and for that, I’m thankful. Because of her, I’m more thoughtful, more compassionate, more understanding, more contemplative. I have a wider view of the world, including a better understanding of questions like “Why am I here?” “What is my purpose?” “What is important in life?” “What makes my life rich?”

It doesn’t matter to me how smart my children are.

It matters how hard they try.

It matters that they persevere.

It matters that they get back up and try again if they’ve failed.

It matters that they treat others with understanding, compassion, acceptance and reverence.

It matters if they are kind, forgiving and loving.

The world will not be better for our children if it is filled with people who are smart. It will be better if it is filled with people who are kind. That’s what matters, folks.

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This post originally appeared on Celebrating Phoenix.

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The Question I Ask Myself Every Morning When I’m Exhausted by 9 a.m.

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There’s so much talk about how moms need to care for themselves so that they are able to care for their children. When you Google “secrets of a happy mom,” you might come up with results ranging from new moms to moms of teenagers, and all the ways one can find happiness in those roles of parenting.

They all have a common theme: moms need personal time, exercise, time alone with a husband or significant other, etc. to be a whole person before trying to do anything else.

In theory, it all sounds so easy, so seamless, so sensible. But my reality is not like that.

I wake up every morning before my kids (as suggested), but not for meditation and a quiet cup of coffee while I gaze out the window. By the time I take a quick shower, and get organized with clothes and lunches, it is time to get the kids up and going. By the time I take my kids to school, I have physically lifted my daughter’s 82-pound frame eight different times: out of bed, into the wheelchair, into the bathroom, into her clothes, into her wheelchair again and into and out of the car. And then on top of that, I am pushing a heavy wheelchair and hauling her walker.

I believe my friends who have kids with more involved cerebral palsy have it 100 times harder, and I try not to complain for that reason. But it’s hard, and it’s constant. I silently resent (just a tiny bit) the moms who hop out at school with their seemingly perfect bodies and their skintight yoga pants – when I feel honestly beaten down and prematurely aged, before the clock hits 9 a.m.

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My daughter is delightful, and fun and awesome, and I wouldn’t trade her for anything.  But my muscles scream, and my shoulders and back ache, and I never, ever get a break.  And I accept this reality, I do. But it doesn’t make it any easier some days.

The “New York Times” published an article last year called “When the Caregivers Need Healing” that covered this exact issue, as well as some of the mental and emotional health issues that can arise when caregivers fill this role for their families.

How do special needs moms put themselves first or practice all of the things they are “supposed” to do to stay strong and balanced for their kids? How do they do all of that when their kids need so much attention and energy, and when we moms have so much anxiety?

The reality is, we can’t fall down on the job. We can’t “not be there” to care for our kids. They can’t do it themselves. As special needs moms, we have a great need for self-care.

But how can we make that happen?

A version of this post originally appeared on Parenting Outside the Lines.

The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Strange Place I Found Comfort After Her Williams Syndrome Diagnosis

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I find that comfort comes in unique places. Maybe it’s part of the package that comes with having a super sassy and oh-so-special teenager who happens to have a chromosomal deletion resulting in a diagnosis of Williams syndrome.

When I think about where comfort should’ve come, several places pop into my mind: school — maybe at an IEP meeting where, in my wildest dreams, all went well and she was included in everything she wanted to be. Or, perhaps in the cardiologist’s office — where maybe we’d hear good news that there wasn’t really a heart defect that needed monitoring. Maybe comfort should’ve come from my family or my friends, but it didn’t because truthfully, they don’t know what to say. And if they did, would I be able to shut off all the anxiety to actually listen? No, my comfort came on a football field. That’s gotta be as rare as Williams syndrome!

I must admit, I’m not known as a parent who’s big on limiting my kid. In fact, I’m quite the opposite. Typically her dreams and goals propel me forward into circumstances that sometimes, frankly, are awkward. My daughter decided, on her own that she wanted to be a cheerleader in high school. Yep. Pom poms and all! While I will never understand why this was her goal at the time, I thought it was only fair to give her a chance.

She was added to her JV squad in the tenth grade as a sideline cheerleader. My husband and I explained to her that she would become involved in a demanding practice and game schedule, but she didn’t care. I told her she’d have to keep her grades up and do all of her homework. Again, she didn’t care. She pressed on and agreed to the challenge.

I attended every practice with her and I will never be able to convey all the fear I felt. Would the girls like her? Would she learn the routines? What would happen if she messed up? How would the coach treat her?

Three times a week, I went. I felt like her roadie or something. I took pictures and recorded videos. I watched. I hoped. I held my breath while she stunted.

The girls were to memorize their sideline cheers and routines as prep for the start of football season. You’d think it was me being put on the spot for all the nervousness I felt!

The coach and I chatted as we walked to the football field and watched the girls form two lines. We looked on as they began to call cheers. I held my breath. It was my daughter’s turn. The coach glanced sideways at me and I nodded. Much to my amazement, a small miracle happened. My daughter called the cheer and the girls followed her lead. She didn’t miss a beat. I sat there half shivering as a tear slid down my face. (Thank goodness for sunglasses!) I looked over at the coach and she winked at me.

Right then, I knew. As I sat on that field, I knew that somehow everything would actually be OK. That my daughter would indeed find her path, be accepted and carve out her life on her terms.

What more can I ask for?

The Mighty is asking its readers the following: What’s the one moment, if you’ve had it, when you knew everything would be OK? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Moments I Didn’t Expect When We Said ‘for Better or for Worse’

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When I said “for better or for worse” nearly 10 years ago, I meant it, but in all honesty, I’m not sure what I thought “for better or for worse” was going to look like in our marriage.

Job changes, financial difficulties, arguments over household chores, parenting differences — sure, I considered and expected things like these to pop in our lives, and some of them did. What I didn’t expect, though, were many things we’ve experienced as husband and wife:

Watching the TV screen together during an ultrasound, only to see my empty womb and crumpling into your arms as we began to grieve the loss of the child who was no longer there.

Watching you rush from the delivery room with our second daughter as she was whisked away to the NICU and I lay on the table trying to process what was happening.

Receiving your phone call in the middle of the night while I was away on business that our then nearly 3-month-old baby had been rushed to the hospital by ambulance.

All of these experiences, and so many more like them, have filled our lives, our marriage. And as much as these moments have been painful and trying, and even emotionally, mentally and spiritually paralyzing, there have been amazing gifts provided to us through them. As I look back across the landscape of our 10 years of marriage, I’m amazed at how I also, in my naïveté, never stopped to think about how these difficult times, the ones that no one wants to go through, the ones that I think most couples are afraid to face for fear of what it will do to them and their marriages, would be the most refining and defining moments for us as a couple.

Yes, I still look at you and swoon, knowing that you are the most handsome man I’ve ever laid eyes on; yes, 10 years later, your sense of humor and wit still leave me in stitches each day, but I look at you now and I see so much more. I see the man who has held me together as I fell apart over the loss of our son. I see the man who brought me the desperately needed reassurance that Ava would be in good hands in the NICU and our older daughter, Olivia was being taken care of by family. I see the man who encouraged me to stay calm when Ava was rushed to the hospital and I was gone, the man who was the cool, calm, collected one I absolutely needed at that time, and so did she.

I know that when we said “for better or for worse” a decade ago, you probably didn’t consider any of these moments either, but I hope that you can look back upon them and many others to see the “more” of me that I’ve become since we married, because of our relationship, and I can only hope that you, too, can look upon these days of our lives and see that although they were unexpected, the fruits of these experiences are exactly what we had in mind when we said, “I do”:

– A happy family.

– A loving marriage that grows stronger by the day.

– A bond that even that the most trying times will not break.

– Strong faith.

– Joy and purpose in our lives.

I look forward to the next 10 years with you with a mix of both excitement and peace. There will be so many more “for better or worse” moments in our lives, but I look forward to being better with you because of both the better and the worse.

Marriage and special needs parenting: it’s a topic not often discussed, but it’s important, and it deserves more discussion in our community. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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From a Few Blog Posts to the ‘Today’ Show — How My Story Went Viral

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The past few weeks have been unbelievably busy for me. To advocate for the dystonia community, I have been sharing my journey via my blog, “Rainy Day Friend,” for nearly five years.

In the beginning I thought, “I hope I reach 50 hits at some point.” Little did I know I would go on to get nearly 4,000 hits in one day, which would then lead to an interview on the “Today” show. Many of you have asked how this happened.

A couple months ago, The Mighty shared some of my blog posts on its website. Then, to my surprise, a few weeks ago its editors asked if they could interview me and write a feature story about my 30-year misdiagnosis. Of course I said yes, knowing they work closely with bloggers to bring awareness to many of the disabilities out there.

After The Mighty’s story went up, I received an email from from The Daily Mail asking to do a story on me as well. A few days after their story was posted, my phone began ringing off the hook. Fast forward a week, and the “Today” show was interviewing my family.

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I know all of this is exciting, but it has also been extremely stressful. My dopa-responsive dystonia requires me to get plenty of sleep and exercise as well as keep my stress levels low in order to keep my symptoms at bay.

This has been a challenge these past few weeks.

I’ve had to rest more, stretch more and remind myself to ask others for help. Even with the extra effort, my balance has been off and I’ve noticed more tremors in my hands and cramping in my muscles. Also, my walk hasn’t been as smooth and I drop more items than usual.

With all that said, I am still grateful for this wonderful opportunity to tell my story and raise awareness. I couldn’t do it without the support from my amazing husband, Steve. There’s no way I could have done this without him.

I must give a heartfelt thank you to The Mighty and The Daily Mail for taking interest in my story so I can have the privilege of helping others. I am incredibly blessed knowing that by sharing my journey, many people will learn more about dopa-responsive dystonia and potentially speak to their physician about their diagnosis.

Jean’s story aired on the “Today” show on Thursday, May 7. Check out the video below.

Read Jean Abbot’s story on The Mighty here. Visit her Facebook page or website for more information.

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They Told Me He’d Never Speak. Then They Heard Him Sing.

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My son, DC, played baseball with the Challengers League (a Little League division for kids with physical and intellectual disabilities) from the time he was 5 until he aged out last year at 21.

The “official” Challengers field in town is located in front of the school he attended from birth to age 3, Early Intervention and kindergarten. Needless to say, he was in this building and with many of the same teachers for a good four or five years.

I have had my battles with the school system over the years, but none so ongoing as the battle over the need for speech therapy. It began in Early Intervention and continued on straight into high school. I believed sign language was absolutely necessary, that it might lessen his frustration level at not being able to communicate, and it did. But sign was not, in my mind, “speech therapy,” and it should not be considered as part of the speech therapy hours listed in his IEP.

I can’t tell you how many of these teachers told me he would never speak. One speech therapist, Barbara, actually told me that I was obsessed with DC speaking and told me, “You know, if he isn’t talking by now, he probably isn’t going to.” He was 5 at the time.

I did not give up on my battle with the school system, but I also did not want to waste any more time getting him the speech therapy he needed, so I got other speech evaluations and hired a private speech therapist. Liza was wonderful and made a great deal of progress with him. It took a few years to get to the point that the school would provide one-on-one speech therapy for DC.

But back to baseball…

Our league used a PA system, and we always had a volunteer to announce the games. Each game opened with the Pledge of Allegiance. When I was president of the league, I decided every player should have a chance to be in the spotlight. Each week, two players were assigned as team captains and another player was assigned to do whatever they were capable of doing on the microphone.

Some led the pledge; some sang a patriotic song or just yelled, “Play ball!” If they were not verbal, they stood at attention at the flag or threw out the first pitch.

DC was about 10 years old on one particular game day when he was scheduled to be in the spotlight. Coincidently, all of the teachers from the Early Intervention Program had been attending a meeting at the school after hours and decided to come down to watch the game before heading home. Most of the players had been their students at one time or another.

Many of them had not seen DC in about four years. Just imagine the feeling I had watching DC to go to the mic and sing “America the Beautiful” as clear as a bell with all of those “professionals” who years earlier told me he would never speak, sitting right there in the stands! I could not have planned this better if I’d tried! Sometimes an “I told you so” is just good for the soul, even if you don’t actually say it out loud.

I had heard DC sing for many years at this point, but watching him sing, clear as a bell, in front of all of the people who once insisted that he would never talk, was like hearing him speak for the first time all over again. I felt as if my heart would burst. He was so proud of himself, and everyone there was proud of him. He lives for praise, and he received so much of it there on the field and afterwards at home when we talked about it. He was on cloud nine for days afterward.

As always, I told him just how proud I was of him. He sang beautifully, but I was just as proud of all of the work he had done to get himself that far. I really don’t know if he even remembers that he couldn’t speak when he was younger, but I do always remind him so he knows just how far he’s come.

A version of this post originally appeared on Taking It a Step at a Time – Autism.

The Mighty is asking its readers the following: Describe a time you saw your or your loved one’s disability, illness and/or disease through the eyes of someone else.  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.

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