Namine pushing a shopping cart with one hand

Pushing a Grocery Cart Was a Confidence-Booster for My Daughter With a Disability

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While on a trip to the store, my daughter Namine got a boost of self-confidence.

Our local Pick ‘N Save has little shopping carts. They have long poles attached, with a little flag at the top that says something like, “Little Shopper in Training.” They’re a little wobbly, but other than that, they’re perfect for introducing your child to pushing a shopping cart.

And as Namine found out, they’re also perfect for teaching one-handed wheelchair control.

When we got into the store, Namine saw the little carts and wanted to push one. Thinking she’d have too hard of a time I said, “No, she’ll need both hands to wheel.”

My wife Jessica responded, “Why don’t you push her wheelchair, and she can push the cart?” In other words, stop being a party pooper.

 

I swear I’m not usually a killjoy — and I like to think I encourage Namine to do as much as she can on her own — but I guess I was really determined to make a fool of myself this time. Jessica reminded me sometimes we need to help out, and that’s an important lesson too: it’s OK to ask for help. Sometimes, as it was in this case, it’s that very help that will inspire going further on your own.

So I extended Namine’s wheelchair handles and pushed her, while she pushed the cart. It took her a little bit to get used to the way it handled. I mentioned it was top-heavy; there were a few times where Namine almost tipped it over, but she recovered nicely and it never spilled.

After a while, Namine decided she’d had enough of being pushed around. She was determined to wheel herself and push the cart. And she did just that. The turns were the hardest, but Namine kept up with us even with a cart full of macaroni and cheese (white cheddar and shells, her favorite).

I think it’s pretty cool Pick ‘N Save has these little carts for little shoppers. It was just a happy coincidence they’re just the right height for Namine in her wheelchair, but being able to wheel herself and push her own cart full of groceries was a great opportunity in problem solving, and a fantastic confidence-booster.

Follow this journey at eichefam.net 

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A Thank You to the Dance Studio That Welcomes My Daughter With Disabilities

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It’s easy to take what we have for granted. As we approach Thanksgiving, I want to draw special attention to the dance studio where my daughter Namine, who has caudal regression syndrome and other disabilities, takes ballet, jazz, and tap lessons.

Anita’s Dance Center does not advertise itself as catering to disabled individuals. Yet, when we were searching for a place where Namine could take dance lessons, it was the only place willing to accommodate her needs.

This was back in 2013. Namine’s participation in ballet — which was the only class she took, at the time — was limited to sitting in her wheelchair and scooting on the floor. Nevertheless, Namine’s teacher was supportive.

Namine took a break from dance for a few years. She was involved with baseball and basketball, and while she loves them, she missed dance. It was, in a way, her first love. We were not very surprised, then, when she asked if she could take dance class once more.

The new class was actually a trio of classes: tap, ballet, and jazz, in that order. This time around, instead of staying in her wheelchair, Namine wanted to try dancing in her walker. Thinking that tap would be too difficult, Namine participated in ballet and jazz.

Like the first time Namine took dance, I sat through the class in case she needed help. Unlike the first time, however, I was the only parent to do so. Namine’s teacher, however, did not mind. As the class went on, Namine became more confident, and asked less of me. By the time the classes ended prior to the recital, I was hardly doing anything at all.

And there was no taking a break from dance this time around. Namine wasted no time in telling us she wanted to be in dance again, and this time, she also wanted to take tap.

Ever since we signed Namine up for her first class, Anita’s Dance Center has been understanding every step of the way. Namine is thankful she’s been able to continue taking dance; we are thankful for an encouraging dance studio that makes all of its students feel welcome.

This story originally appeared on Eichefam.net.

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To the Dad Overwhelmed by His Newborn's Bleak Prognosis

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My daughter, Namine has double-inlet left-ventricle heart defect (DILV) and caudal regression syndrome (CRS). As far as physical limitations go, the latter is certainly the more apparent disability. But as serious as Namine’s conditions are, she’s doing exceedingly well. We were in the grocery store yesterday, and Namine was being her normal hyper self – singing and talking and kicking her legs. I thought to myself, you know, I wish I could write a letter to Jessica and myself when Namine was first born, when we faced the daunting and crushing prospect of a dying child – a disabled child, unable to do anything by herself. It was a time when we were promised nothing but crushed dreams, a time when we faced nothing but dispair. If I could write to that couple and reassure them that God was still watching over them, I would. I think it’s good to reflect, to acknowledge what you have and give thanks for it. So here goes.

Dear Paul and Jessica,

I’m going to skip right over metaphysical impossibilities and assume you’ll believe every word in this letter. I know I wouldn’t, but hopefully Jessica will. She’s always been the better part of you, Paul. So assuming you trust me, I’ll tell you: I’m you. I’m writing this letter to you from roughly two and a half years in the future. I know you have so many questions, Paul — questions that you will rage at God to answer. Frankly, He won’t. Not yet. He answers our questions and prayer on His own time and for good reason. He loves you, Paul. You, Jessica, and your newborn daughter, Namine. It doesn’t feel like He does, I know. I know it feels like He’s tearing your heart out, because I remember how it felt.

I know you think about how Namine couldn’t breathe when she was born. I remember our tears. I remember trying deperately to get through her rushed, frantic baptism. I remember us thinking that surely God wouldn’t let her die so soon. She didn’t die. She didn’t die, but she’s still so fragile. And she needed heart surgery at only 2 weeks old – how unfair. And her legs. I know the doctors have promised that she’ll never move them. So many hopes and dreams you and Jessica had for your little Namine are gone. How unfair, how unfair!

You won’t find this out until much, much later, but I’m going to tell you now. You’ll find out from Namine’s cardiologist that the CRS saved her life. Her heart didn’t need to work as hard, sparing her the need for heart surgery right away. Yes, I know she eventually needed the surgery. But it occurred at a time when Namine had had the chance to grow and become stronger. She was able to wait until she was able to survive it. She was alive, Paul, she is alive! And she will grow and become even stronger. You’ll see. You don’t see it now, with so many wires attached to her tiny body, I know, but you’ll see. She will surpass all her doctors’ wildest expectations.

I know the trach terrifies you. I know you would never admit it to your wife, Paul, but you should. should have. Learn from my mistakes, and talk to her. You’ll find out that you share the same fears, and together, you are stronger. It was a lesson hard learned. Put down your fear and your pride, and trust your wife. And both of you, trust in God. He will get you through this. And He will get Namine through this. She’ll have the trach for two years, and I know for you that must seem an eternity. But it’s the past for me, and it seems to have gone by so quickly.

There are surgeries Namine will need, and you will feel that each one is worse than the last. You will feel trapped and crushed by the stress it will take on you and your wife, but you will lean on each other, and it will make both of you stronger. It will bring you closer together; together you will go through what will feel sometimes like hell on earth, but you – all three of you – will come out the other side a stronger, closer, more loving family.

I’m not going to give you a play-by-play with all the surgeries Namine will need. But trust me when I say that Namine will do just fine. God has her in His almighty hand, and He has carried her through. And those promises the doctors made? Don’t worry. She’s not mentally deficient – far from it. She’s as smart as you could hope for, and she’ll have you on your toes soon enough. She can move her legs just fine, and she’s learning to walk. That has been a particularly hard road, but Namine has come through amazingly well.

Paul and Jessica, I want to give you the assurance we never had. Know that all three of you will make it through. It’s not over for us either – Namine still has to get rid of her g-tube, and she has the Fontan Operation coming up probably in the next year or so – but Namine is so much stronger now. She has grown so much.

Hug her and kiss her every day. Always, always tell you how much you love you. Both of you. Never take a day for granted.

Sincerely,

Paul from the future

P.S. Namine loves Batman. Seriously, you should buy her Batman pajamas sooner than I did.

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This post originally appeared on eichfam.net.

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How I Got Over My 'I Don't Want Him Labeled' Mindset

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“I don’t want them labeled.”

If I had a dollar for every time I heard this, I could pay off my house, your house and probably have enough left for a nice new car. Honey, it’s time we had some real talk.

I keep hearing this. Hell, I’ve even said it myself. But, this isn’t about you. It never was. It hasn’t been about you since the moment the doctor said, “It’s a boy! Or girl!” Sorry, sunshine, I’m all for a pity party for one from time to time. But this resisting a label thing? That’s not helping your kid at all.

I’m not going to beat around the bush with this. Your kid (and mine) already has a label. The weird one. The troublemaker. The quirky one. The “What’s with that kid?” one. Why not get them the correct one? More important, get them the correct supports in place for success.

I believe the label is a necessary evil. I know being practical is about as much fun as watching paint dry, but it is what it is. Think you’ll get an insurance company to pay up for some sort of nondescript help? I can’t even get them to pay past 30 sessions of speech therapy, and my kid has an autism label. Plus, I get the added bonus of having my yearly conversation: “Why yes, I will still be taking him to speech therapy and paying out of pocket. He’s still very much autistic. He didn’t magically recover from his severe expressive and receptive communication troubles just because we hit the limit. Go figure!”

And school? You’re definitely going to need a label there. No one is handing out IEP’s all willy nilly for kicks. You want that free and appropriate education the law entitles your child, you have to get the label. You just do. You want to get the best possible tailor-made education for your kid, you best accept that label that so terrifies you.

I get it. I really do. I was in denial for years. I didn’t want to see what was right in front of my face. Once I started accepting it, well, I got used to it. It’s not a case of getting better. You just start finding your kid’s own groove. I started following the tour guide that autism sent to me. Yes, there are frequent stops for french fries and I know more about trains than I ever thought possible. I started to get a bit more fluent in his own language while teaching him my own. I saw past the label.

In other words, I got the eff over myself. Everyone just wants what’s best for their kid.

This post originally appeared on Autism With a Side of Fries.

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Why I’m Thankful We Didn’t Know About My Daughter’s Disabilities Before She Was Born

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DSC_0254-3 If I knew then…

that Ashlea would need a kidney transplant…

that she would have multiple disabilities…

that our lives would never be the same…

would we have done things differently?

I’m sad to say that we may indeed have done things differently. If we’d been told before the girls were born that Ashlea was going to have cerebral palsy, a vision impairment, an intellectual delay and kidney failure, we would have assumed she would have no quality of life and we may have requested she not be resuscitated at birth. If we’d found out that same information in the first few days of her life, we may have decided to withdraw care (I know this is a contentious issue, but when our baby required full life support and was in complete renal failure, it was presented to us as an option.).

But we didn’t know.  

Thank God we didn’t know.

What we didn’t know is how wrong we were to assume that someone with a disability would have no quality of life.

What we didn’t know was that having a child with serious disabilities would be a blessing.

That we would love Ashlea just as she is

that she would help us see what is really important in life…

that we would be OK with not getting the fairytale ending.

What an eye opener it’s been to live with Ashlea and her disabilities. If we’d known, we possibly would have made different choices. But we would have robbed ourselves of the joy and the delight that is Ashlea. We would have robbed ourselves of the chance to have our eyes opened, to see what is really important in life.

Even if someone had told me back then that I would have a child with severe disabilities and that I would be OK with it, it wouldn’t have helped. Because I wouldn’t have believed them.

Some things you have to learn by experience.

Thank God we didn’t know.

This post originally appeared on Thinking of Starting a Blog.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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To the Mom Who Thought a Down Syndrome Diagnosis Was Devastating News

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Screen Shot 2015-01-21 at 10.36.25 AM If I could go back to the day I received what I deemed “the most devastating news ever” — that my newborn son had Down syndrome — I would say, “Girl, you shed an extreme amount of unhappy tears on a day that was supposed to be one of the happiest days of your life.”

I would tell myself, “Just wait, you’re going to experience a need to protect like you’ve never felt before. You will fully understand what the term ‘mama bear’ means.”

I would tell myself, “Greyson will always be able to turn your frown upside down.”

I would tell myself, “Greyson is going to teach you patience, empathy and compassion.”

I would warn myself, “You’re going to realize your special needs son is special — but not because he has an extra chromosome,”

I would say, “Don’t stress about what his future holds; cherish his preciousness now.

I would insist, “Don’t read the crap on the internet about Down syndrome or what ‘they’ say will happen.”

I assure myself, “Greyson is going to amaze you with his ability. You’re going to use the term ‘quick study’ when referring to your little man.”

I would console myself. “I know you’re going to worry about what strangers whisper about your son, but you will become oblivious to those around you. You won’t look for the stares. You’ll find strangers who are smitten with your blonde-haired, blue-eyed baby boy.”

I would tell myself, “You’re going to be so proud of your son and excited when he reaches each milestone. You’re going to become his biggest cheerleader, proudly touting each and every accomplishment.”

If I could go back to the day I got Greyson’s diagnosis, I would simply say, “You, with the love and support of your family and friends, got this! You’re going to be fine. More important, he is going to be fine. Actually, he is going to be better than fine.”

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This post originally appeared on Greyson and Gavin’s Ma.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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