How a Dental Visit Inspired My Son With Autism to Ask This Question

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“Mom, why can’t everyone be kind?”

That plaintive question had been prompted by, of all things, a visit to the dentist for my son’s semi-annual teeth cleaning appointment.

While our family has been blessed with some pretty incredible people in our lives, there are always those whose words and actions wound deeply. Unfortunately, when public excursions are involved, you never know what sort of response you’ll receive.

Our dentist’s office is chock-full of amazing professionals, all of whom regularly go out of their way to accommodate the extra time and effort that may be needed for caring for a person on the autism spectrum. Even though I knew I could expect an overall pleasant reception when I brought my son for his appointment, I wasn’t at all prepared for what we encountered.

Less than a minute after we had arrived for my son’s appointment, a sweet, grandmotherly-type woman came into the waiting room, introduced herself to us and then sat down in the chair opposite me. With a giant smile wreathing her face, she asked me if it was OK if she chatted with my son.

Slightly surprised, I gave my assent and then watched in awe as this amazing woman brought my son out of his shell.

Overlooking his constant jerky movements, she asked him the perfect questions about himself — what games he liked, what Lego creations he had built recently, what his favorite foods were and who he thought the best Marvel superhero was. I watched my son come to life, speaking with such excited animation that I initially moved to give him a shoulder pat, which is our signal in public for him to calm down. The sweet lady saw this and put her hand out to stop me, telling me that it was perfectly OK, and that she was happy that he was happy.

She then told my son if he was ready, it was time to go back for his teeth cleaning. As my son happily started to walk away, this incredible lady leaned closely to me and whispered, “It’s OK. My grandson has autism, too. Aren’t they the sweetest kids?”

And with that, she smiled once more at me, patted me on the shoulder and walked toward my son.

On the ride home, my son asked me, “Mom, why can’t everyone be kind?”

The kindness he had received from a stranger made such an impact on him that he asked me to write and tell everyone they should be kind to other people because everyone deserves to be shown they matter.

What if we all made a pact that we would go out of our way to show kindness and exhibit grace in action to other people?

What if we use the knowledge we have gained through walking through our own experiences to help other people?

What if we decided to knowingly be “that” person who gives hope to those who are struggling and provides words of encouragement to people who are starving for any indication that they’re doing well?

What if we showed love to the people who don’t go out of their way to show love to us?

What if we chose to speak an encouraging word, telling someone they’re doing a great job?

What if we chose to smile at strangers, rather than just go about our daily tasks in our always-hurried fashion?

What if we provided a helping hand to the mom struggling to calm her child who is experiencing a meltdown in public or to the individual in crutches struggling to carry packages?

What if we simply chose to be intentional about showing kindness?

We all know what it’s like to be on the receiving end of unkind words, actions and deeds, some intentionally delivered and others delivered out of ignorance. We hopefully also all know what it’s like to be treated with kindness and dignity and to be shown love and grace. Where the first experience wounds deeply, often leaving lifelong scars, the second one provides a healing balm for the heart, soothing hurt places we might not have realized were damaged.

I know that those who may be facing challenges brought on by illness, limitations or disabilities — or who have the dual task and joy of caring for others with those life-challenging situations — often feel like we are scraping the bottom of the barrel ourselves and have nothing left to give to others. But if we only took a moment to remember how it felt when someone else went out of their way to be kind to us or to our loved one, then we might just be able to reach down and tap into some of that incredible strength we never knew we had until life’s circumstances caused us to reach new levels of endurance and perseverance that we wouldn’t have thought possible.

My son wants me to ask you to accept the kindness challenge, choosing to show kindness to others, because each person matters.

I am accepting the challenge.

Will you?

M3361S-3034

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The Most Powerful Word to Me as a Special Needs Mom

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My daughter, Afua, doesn’t walk…yet.

Afua isn’t communicating with signs…yet.

Afua is not drinking from a cup…yet.

I find myself using these phrases at doctor’s appointments, school meetings and discussions with friends or relatives. I can’t seem to say the first part without adding the word “yet.” I wonder if my “yet” is viewed as a mom who is unhappy with the way things are or if they truly understand my feelings behind using the word.

Right now, the word “yet” gives us power to hope for Afua’s future. It gives us permission to say that we know more miracles are around the corner. That the hours she works so hard in therapy each week are for a purpose. And we hope she will get to experience new things as a result of that hard work.

Yet, if nothing changes, if nothing improves, if life tomorrow is exactly as the days before, she is loved just the same. Her performance is not a measure of her worth.

So I guess this is really the heart of parenting a child with special needs. We live in the moment, we hope for the future and we constantly worry that our moments with our kids will be cut short. Balancing all these feelings is 90 percent of my journey.

Follow this journey on Joyful Journey.

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Deciding When Not to Treat Our Child With a Degenerative Disease

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In most areas of my life, I prefer to regret something I have done rather than regret something I haven’t done. But when it comes to my 6-year-old son with Menkes disease, this — like so many issues — doesn’t fit the norm. When you face a degenerative disorder in your child, a lot of measures get turned on their heads. The expectation can’t always be to make things better since we know the longterm path involves things getting worse. Things are going to stop working as they should. So how do we decide which of those things are preventable or can be stalled, and which medical interventions are not worth the risks?

Recently the problems with Lucas’s hips and spine went from minor to severe. The hip that would chronically dislocate was now permanently dislocated, and the previously normal hip was chronically popping out of place. His spine curvature had greatly increased, and we began to fear his positioning due to a question-mark-shaped spine might compress his internal organs.

Two surgeries were recommended: one for the hip(s) and then later for the spine.

Most parents think they’d do anything to help their child. My wife and I think so, too. But we had a gut feeling that maybe the treatment would be worse than the problem it would fix.

We think Lucas has a diminished sense of pain; he rarely complains from any discomfort. Maybe his nerve receptors are under-developed along with his brain, muscles and bones. (If so, what a welcome silver lining to this horrible disorder.) So his hip, despite being visibly “wrong,” wasn’t uncomfortable to him. He doesn’t walk, or sit unassisted, so he doesn’t absolutely need the hip to function normally. As for the spine issues, we checked in with his specialists and each told us that so far, it wasn’t impacting the function of his organs. The curve happens low on his spine, so his lungs, bladder and kidney are all so far so good.

If Lucas was constantly crying out in pain, we might have rushed him into surgery. But the surgery recovery can be long for patients in normal health. Lucas tends to recover three times more slowly than normal. For a child expected to have a short life, did we want him to have several months of it spent in hospitals?

Add in the risks of any surgery  maybe it goes badly, maybe an infection sets in — and we were not just afraid to move ahead but also questioned the value of these interventions. We didn’t want to kid ourselves either. Would we stick our heads in the sand and hope for the best despite being told things would get worse? But by now, we take it as given that some things will eventually get worse. Should we fight to stave off all of them?

We did not decide this lightly. We switched our insurance so that we could visit other doctors at a different hospital for additional opinions. We drove hours and spent nights away from home to make those appointments. Some doctors said yes, some said no to surgery. Many more remained neutral, reminding us it was our decision.

Lucas can’t talk, so he can’t tell us his choice with words.

What haunted us (and still does): would we kick ourselves more if we did nothing and eventually saw things get worse, or if we did the surgeries and things got suddenly worse?

We have been extremely fortunate that for nearly two years, Lucas has been in great spirits and good health (his version of good health). He’s had nothing worse than common colds and flus to contend with if you discount the hip issue. Hospitalizing him, with risks of aspiration or ending up with a tracheotomy, seemed so much harder a decision given how happy he’s been lately. I began to imagine an outcome where we’d trade a bad hip he didn’t really need for a bad windpipe he really does need. If fixing the hip left him with a trach, was that a good trade-off? Was that progress toward a healthier boy? Never mind that the day will likely come that Lucas does need a tracheotomy; I just didn’t want to cause that day to be tomorrow.

We wrestled the pro and cons back and forth for several months, gathering more medical advice along the way. Eventually we both found some peace in the decision that doing less would help him more. Early on after his diagnosis, my wife and I decided we wanted greater quality of life for Lucas, not necessarily greater duration of life. We also told ourselves “no extreme measures.” The catch there is that those measures creep up incrementally and don’t often seem extreme in the moment. Sure enough doctors tell us this surgery is a risk but not an extreme measure; they do it all the time on kids more fragile than Lucas, too. I believe that. But “extreme” is still subjective. A day may come when we face more pain for Lucas and regret not intervening earlier. Maybe by then it will be too late to attempt some of the options for treatment we have now.

Deciding not to “help” our son has tormented and terrified us. But watching him live each day pain-free and happy, we can’t take the chance of changing that. Not today anyway. As always we’ll face tomorrow, tomorrow.

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Watch How This Nonverbal 5-Year-Old Reacts to Hearing Sara Bareilles Sing

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AJ Stafford just celebrated his 5th birthday. This is a significant milestone for him and his family, as AJ lives with numerous medical conditions, primarily cerebral palsy and epilepsy, Local 12 News reported. He is unable to walk, roll over or verbally communicate, and he usually reacts minimally to his surroundings.

But AJ’s parents recently discovered something that could potentially change their son’s life. When Stephanie and Andy Stafford played a song by Sara Bareilles on their way home to North Bend, Ohio, after a recent vacation, they saw their son do something he’d never done before. AJ began excitedly vocalizing and moving his feet to the music.

Stephanie Stafford was so thrilled by her son’s giddy response to Bareilles’s music that she took to social media to try to snag the singer’s attention. Stafford posted the video below of AJ listening to Bareilles’s song “Brave” to Facebook on July 31.

Let’s try the unthinkable! Please watch, share, tag! #seacreststudios #ryanseacrestfoundation #ellendegeneres #sarabareilles

Posted by Stephanie Michelle on Friday, July 31, 2015

 

Since Stafford posted the video, it’s gotten nearly 14,000 views and more than 400 shares. Stafford hopes the video will garner enough attention that Bareilles will see it and reach out to AJ.

My hope for AJ is that he’s just happy,” Stafford told Local 12 News in the video below. “That he just enjoys life and when he listens to music, especially Sara [Bareilles], he’s happy. And that means a lot to us.”

Learn more about the Staffords’ story in the video below.

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The Best Advice I Ever Received as a NICU Mom

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When my twins were born, I lived at the NICU. I was there about 18 hours a day. For the first four weeks, it was my home. But after the first month, I had to finally go home and “snap out of it.” I had to come to terms with the fact that my babies weren’t coming home with me anytime soon. I had to remember and realize that I have four other children at home waiting on me, depending on me and needing me.

So I left. I went home. I would make arrangements to be at the NICU either every other day or every few days. I’d split my days and weeks. I had six kids: four girls at home and two premature newborns an hour away.

It was hard, to say the least. I was dealing with postpartum depression, my faith and financial problems. Then I had to shove aside all the emotions that come with that and put a brave smile on my face for my children at home. I was miserable on the inside and out. I was sad. I was just so sad.

I spoke to an ex-NICU mom once and she gave me the best advice I could’ve ever received. She said:

“When you are at the NICU, be there. Don’t think about anything else. Don’t think about your husband, kids or anything else. Be at the NICU. Enjoy your babies. Take in their breaths… take in their lives. Give them your all. Give your baby hope, love, prayers and give them all your energy they need to fight!”

“And when you are home, be home. Enjoy your other children, your husband, your bed, your rest. Don’t worry or wonder about your NICU babies. They are in the best hands.”

It was hard to do this at first. But I needed happiness. I needed the joy of my children’s laughter and smiles and most importantly, I needed their energy. My children give me life. Yes, it was a scary and sad time, but I believe God has blessed me with other children. I must acknowledge the blessings. I must be grateful for all He has gifted me with. I learned to be grateful and faithful for all I believe God has given us.

I have seen babies be called back to heaven. I have seen parents lose hope. I have seen families in despair for their infant. I have seen parents take their babies home.

I was blessed with two additional babies (and four girls at home). I don’t believe God promised me easy. I believe He promised love, life, family and blessings.

My son spent 143 days in NICU. Moments ago I made the last call to the NICU I will ever make because my son is coming home. The last call I will make to check up on him. The last call. The last day. This is it. I’ve cried many tears of pain and relief, and many more of joy. Today, I cry tears of thanksgiving. Tears of pure happiness. Tears of praise.

Deep down it’s a bittersweet feeling. I’ll miss the primary nurses who cared for my son, Matthew, and his sister. I’ll miss the doctors, the front desk staff, even the nice cleaning lady who always asks about them. I’ll miss the hallways, the elevator that talks to us when we get in… I’ll even miss the vegetarian pizza calzones on Fridays.

Today our NICU journey ends. Tonight we start a journey. This new ride, I’m told, is even more scary. But we are ready.

Follow this journey on All the Days the Lord Has Made.

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This Mom’s Response to Autism Being 5 Times More Likely for Boys Than Girls

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Dawn and Trinity Douglas. Via Memories Manifested Photography.

When Dawn Douglas found out her daughter Trinity has autism, she knew the 2-year-old wasn’t alone. Autism now affects approximately one in 68 children, according to the National Autism Association. Of the challenges autism can present, forming relationships proved difficult for Trinity.

“The things I take for granted, like easily making friends, she fights hard for,” Douglas told The Mighty in an email. Douglas knew of many support groups for children with autism, but none of them had many girls in them. Boys are fives times more likely than girls to have autism, according to the Center for Disease Control and Prevention.

Agonizing over Trinity’s social future, Douglas decided to start My Circle of Girls (MyCoG), a group to foster friendships for girls with autism. Started in March 2014, MyCoG holds monthly programs in Raleigh, Durham and Chapel HillNorth Carolina.

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Via Memories Manifested Photography.

One event in particular stands out to Douglas. Last summer, MyCoG had a two-part swimming lesson for the group members. A scary reality of autism is the risk of drowning, which is among the leading causes of death for people with autism, according to the National Autism Association. Douglas knew two lessons wouldn’t ensure every girl could swim, but she and other parents were comforted knowing the girls were introduced to life-saving skills.  “That was when I realized that MyCoG is not only a social and service group, [but also] it is a more holistic approach to addressing the needs of girls living with autism,” Douglas told The Mighty.

While Douglas has always had a strong relationship with Trinity, who’s now 6, she acknowledges that MyCoG has given them even more time together and even changed her mindset as a parent.

“MyCoG has really changed my life,” Douglas said. “It has given me new perspective on parenting a child with autism. It has offered Trinity new friends, invitations to gatherings and a diverse network of support for our family.”

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The girls learned about dentist visits during a recent event. Via Memories Manifested Photography.

At first, MyCoG held events for girls ages 2 to 6, but in August 2014 it expanded to include girls ages 2 to 11. In the future, Douglas hopes they can include girls up to 18 years old, and she wants to expand throughout the state and country.

“MyCoG has opened new doors in the autism community as well as [for] girl empowerment,” Douglas said.

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Parent NaShonda with her children. Via Memories Manifested Photography.
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