The Foolproof Guide to Loving Our Special Needs Family

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Screen Shot 2015-08-10 at 7.42.02 AM You don’t have to look too far into the world of special needs to find it chock full of inspirational stories. It’s bursting at the seams with determination and it’s spilling over with promise, pride and people prevailing. This is why I will not speak of my son Judah’s struggles. I will not dive into the pools of possible limitations. I will not elaborate on hardships or strife. Instead I will focus on us as a family, what we need from you, what will ultimately aid in Judah’s success and maybe even send him into a world so inclusive that we don’t even know what it looks like yet.

1. We are not special. We are not heroes, or brave or extraordinary. We are just a family who loves each other. We will fiercely protect our child, as I know any of you would.

2. You can ask us about Down syndrome. We certainly do not know all that is Down syndrome. but we are learning fast… and, as I tell my students, “if I don’t know I’ll find out for you.” We are not frightened, embarrassed or offended if you ask. In fact, we prefer it.

3. We are different but we are the same. We are, as my new favorite saying states, “more alike than different.” We still like a beer on the front porch. Our world does not spin on an axis revolving around Down syndrome. It is a part of who we are now and we don’t mind talking about it, but we also still like: flip cups, family, friends, fun.

4. You can treat our son just like any other baby. He doesn’t need extra coddling or comforting just because he has an extra chromosome. We still put him in time out, take him everywhere we go and let himself soothe to sleep.

5. Please ask us to hold our son… or if that’s not your style, ask to look at him. He will not break, and let’s face it, sometimes his parents need one.

6. You don’t have to pity us. We are fine. We are better than fine; we are enlightened, enchanted even.

7. Thank you when you say you’re proud of us, but really, we should all be proud of each other for raising children. It is a fruitful yet formidable job. We all deserve a hell of a lot of praise for just keeping these munchkins alive — not to mention being the reason they flourish.

8. Help support us supporting our son. Misconceptions and misunderstandings swirl around our society. You know someone who has a baby with Down syndrome. You have witnessed the testament to what Down syndrome is not. You have the power to destroy the negativity if you come across it. The fact that you are reading this tells me you are my son’s advocate, and I love you for it.

9. Just keep doing what you’re doing. I get real sappy when I start talking about how sensational everyone has been. It exceeds everything I think I ever could dream up… assuming you could dream up a situation such as this. Tears show up every single time. So thank you. Thank you for loving our son and us. Thank you for giving us time to process.  Thank you for not deserting us when we were new to the racket and things were messy. Thank you for being our family, our friends, our rocks. I know it sounds cliché. It may even seem unfathomable, but Down syndrome is the best thing that could’ve ever happened to our hearts, our faith and our perceptions. We truly are #downsyndromeblessed.

Follow this journey on Finding the Joy.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

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Mom Gets Caring Surprise From a Stranger Outside the Hospital

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A mother from Canberra, Australia, was recently forced to spend several days in the hospital because of medical complications with her 9-week-old son, according to an anonymous post she left on a Facebook page called Canberra Mums.

She was finally discharged on August 9, and when she got to her car in the hospital parking lot she realized she had a parking ticket. On top of all the stress of a hospital stay, a parking ticket was just one more thing this mother didn’t need to worry about. However, when she opened it she found a note from a kind stranger named Laura saying that the ticket had already been paid for.

Hi there, I saw your car had a parking ticket on it. I’m sure whatever you are going through at hospital is tough enough, so I have paid for you,” read the note, which included the receipt information for the ticket and the words, “Hope things get better.”

Over the past few days I have been in hospital with my 9 week old son. We were discharged today and as I walked to my...

Posted by Canberra Mums on Sunday, August 9, 2015

 

“I hope that Laura sees this and knows how much I appreciate her support,” The Canberra Mom wrote in the anonymous Facebook post.

The post, shared on the page on August 9, has been liked over 46,000 times and shared nearly 4,500 times.

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Why the First Day of School Isn’t Just a Regular Milestone for These 9 Kids

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This week marked the beginning of back-to-school time for many families across the country. For parents of children with medical complications and chronic illnesses, the return to school is an important milestone in a child’s health journey.

This week, Children’s Healthcare of Atlanta (CHOA), a children’s hospital in Georgia, invited families to share photos and stories of current and former patients going back to school. Their answers blew us away and reminded us to acknowledge the importance of every little victory.

 “We often say that our job is to get kids back where they belong — out of the hospital and back to classrooms, neighborhoods and ball fields where they can experience the joys of childhood,” Jim Fortenberry, M.D., Pediatrician in Chief at CHOA, said in a statement emailed to The Mighty. “When a child’s daily life has been interrupted by injury or illness, the first day of school is much more than a milestone. It’s a return to normalcy.”

Check out some of their stories below: 

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Matthew McMahon

 

“Matthew’s first day of 7th grade. Missed the last 1 1/2 years of school going through treatment for osteosarcoma.” — Kerri McMahon

 

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Eli Johanson

 

“Eli’s first day back at preschool after his bone marrow transplant in May of 2014. He was hospitalized for 8 months at CHOA and spent 34 days in the ICU. He is a Wiskott Aldrich Syndrome survivor!” — Charity Johanson

 

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Meagan Gareau

 

“Born with severe hydrocephalus and shunted at birth… 14 brain surgeries later, Meagan had her first summer home with no hospital visits, stays or brain surgeries. Yay! She went back to her special needs preschool today in Cobb County!” — Molly Gareau

 

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Jeremy Brown

“Jeremy Brown was diagnosed with acute lymphoblastic leukemia (ALL) in December 2014. He’s starting 7th grade. He has two more years of treatments, but he always has a smile on his face. — Susan Carcione Brown

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Jacob Douglas

“[Jacob has] down syndrome and had open heart surgery at Children’s healthcare of Atlanta when he was just 18 month old. August 3 was his first day of Kindergarten.” — Shawn-Jennifer Douglas

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Grant Wolfe

“Grant spent the first few months of his amazing life with a diaphragmatic hernia. This week he started Kindergarten as a healthy, happy and hilarious miracle kid.” – Leah Wolfe

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Abbigail Hamby

“Abbagail was diagnosed with Pierre Robin sequence. Six surgeries later, she’s a healthy, smart, beautiful 5-year-old who just started Kindergarten.” — Lisa Hamby

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Mike Heininger

 

“Mike was born with spina bifida. He is 10 years old and in the 5th grade.” — Debbie Reynolds Heininger

 

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Emelie Wehunt

“Emelie has a seizure disorder, missing piece of chromosome and had to have neurosurgery when she was 3 for a Chiari [malformation]. Thank God for answered prayers — first day of 2nd grade.” — Jenny Kuziak Wehunt

You can go here to see the full thread on CHOA’s Facebook page, where more than 100 people have shared their stories.

“[A child’s first day back to school] is a milestone that’s been preceded by the achievement of other milestones, such as gaining enough strength to breathe without a ventilator or building back an immune system that’s been weakened by chemotherapy or anti-rejection medicines,” Fortenberry said. “Seeing former patients starting kindergarten or leading classrooms of their own is the best reward you can ask for as a doctor, nurse or allied health professional.”

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Why I Almost Didn’t Take My Daughter With Autism to a Pool Party

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My daughter Julianna had a pool party to attend with the activity days group, which is comprised of girls ages 8 through 11. For any girl this age, a pool party sounds like a great idea on a hot summer day. But there were two things that made this event difficult for my girl:

1. She cannot swim and is scared to go in the water, especially in large groups.

2. She is on this GFCF (gluten-free, casein-free) diet, and I was concerned she might eat something she shouldn’t.

Oh, and if you want to add a third one, I developed a major migraine for the first time in my life, so my plan to stay there with her the whole two hours went out the window. I knew she wouldn’t be able to go with me this time. And that made me nervous, given the above two reasons.

So I called one of her leaders and explained things to her. She can’t swim. She’s on a special diet. No problem, we can watch her. This wonderful woman made me feel so much better about bringing her there and leaving her without my help.

But in general, if I’m completely honest, I really don’t want to be there when she’s in a social-type situation. And I have two reasons for that, too:

1. I don’t want her to stay by my side and become too dependent on me. I want her to go out of her comfort zone, and if I’m there, she doesn’t have to do that.

2. I hate seeing her around a group of kids when they’re ignoring her at times, when they don’t talk to her, when they assume she doesn’t know how to play and when she’s left out.

Now this doesn’t always happen. Most of the time kids are really nice to her. But the older she gets, the more different she becomes, and it’s just too hard for me to see that. It’s too hard for me to see how she can’t go up to a group of girls and know how to socialize. And I don’t want to be the one forcing my way in there with her all the time.

I wish all kids had that innate sense that a child who’s different should never be left out — that the girl in the corner or on the side of the pool, though she might not know how to play or talk in a group, still cares about being included. I wish those kids would notice that and come over to her, talk to her and make her feel important, just like the other kids feel. I usually end up resenting the children who don’t even make an effort to talk to her or include her (but I get over it). I know that sounds horrible, but it’s true. That’s exactly why I don’t want to be there to see it. I don’t want to know who was ignoring her. I would rather assume everything went just fine. This is an honest post. And right now, I’m crying just writing about it.

Now I understand girls at her age shouldn’t be expected to do these things. I know they’d rather play with other girls they can have fun with. I guess what I’m wondering is, how can this be improved for girls like Julianna? What can parents do to educate their kids about children with differences? How can we make sure kids like Julianna don’t feel left out? How can I help Julianna learn how to socialize better, because she’s approaching pre-teen years, and pretty soon, socializing is going to be the most important thing friends do? Just thinking about this makes me so scared.

I wasn’t at this party, so I don’t really know if she was included or not. But I’m using it as an example to explain what I go through every time she goes to some type of party or event. I know what it’s like to feel left out and ignored. I think everyone goes through this at some point growing up. I don’t know how much can change, because kids will continue to grow up, and kids with differences will do the best they can to keep up. And if they can’t, the most important thing is for them to know they have someone looking out for them, caring about their needs and feelings, too.

Julianna wants to be included and loved and have friends who love her for who she is, just like anyone else. I’m not saying she doesn’t have friends like this, because she does. But I just want people to know a little bit more what I feel and what Julianna feels.

Having a child with special needs never gets easier. Every stage presents new challenges to overcome, just as it does raising all children. Today I was telling my husband that I considered not taking her to the party, even though she was so excited to go. I told him it will be too hard because I have a headache, which means I can’t be there, and then she can’t swim, and then her new diet. But he said, “It doesn’t matter. What is important is that she is there.” And he’s right. I can’t let anything keep me from her being there. Maybe no one else will remember she was sometimes, but at least she will know she was there. If she wants to be there, I will take her. And hopefully, each time she is growing in some small way.

Follow this journey on The Special Reds.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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.

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She Thought She’d Never Walk Again. Now, Her Fitness Photos Inspire Thousands.

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On June 9, 2013, Emma Carey was on vacation in Switzerland when she took a skydiving trip that went horribly wrong. Carey, then 20, recalls plummeting toward the ground in absolute terror when she realized something had happened to her and her instructor’s parachute.

She hit the ground hard on her stomach. After registering with disbelief that she’d survived the fall, something made her stomach churn all over again.

“I tried to roll over, and that’s when I realized I [couldn’t] move. At all,” Carey, who lives on the Gold Coast in Queensland, Australia, said in a YouTube video describing her accident. I was completely paralyzed from [the chest] down. I couldn’t even roll over, let alone move my legs [or] move my feet.”

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Photo via Carey’s Instagram page

Carey was rushed to the hospital and diagnosed with a spinal cord injury. In addition to telling her she’d have to use a catheter for the rest of her life, doctors explained she’d likely never walk again and would need to adapt to using a wheelchair.

Two years and a long recovery later, Carey has proven them wrong in a big way.

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Photo via Carey’s Instagram page

Since the accident, Carey, now 22, was able to regain feeling in the front of her legs. Though she’s still considered a paraplegic because she has no feeling in the backs of her legs, Carey is able to stand and slowly walk short distances. She still lives with lasting health complications as a result of her injury and uses a wheelchair when walking longer distances.

Now, Carey has taken to social media to prove you can be a paraplegic and lead an active, fulfilling life at the same time. She has a YouTube channel where she shares thoughts about her recovery, how she emotionally handles life after her accident and whatever else she has going on in her life. She also posts photos of herself doing the things she loved to do before her accident — like exercising — on her stunning Instagram page, which has nearly 40,000 followers.

Carey says her accident and relearning to walk have inspired her to be as active as she can be, as well as pursue a career in physiotherapy.

I think I would bring a lot of personal insight to the job,” she told The Canberra Times. ”I also know that sometimes your mind can be stronger than your body.”

See some of her beautiful Instagram photos below.

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Photo from Carey’s Instagram page
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Photo from Carey’s Instagram page
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Photo from Carey’s Instagram page
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Photo from Carey’s Instagram page
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Photo from Carey’s Instagram page
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Photo from Carey’s Instagram page
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Photo from Carey’s Instagram page

To hear more about Carey’s story, visit her Instagram, Tumblr and YouTube channel.

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My Son With Autism Likes to Wander. Here’s How We Manage That.

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Many children wander and many parents have had that moment of panic in a shopping center or playground when they lose sight of them. Having a child with autism makes these times a little more frequent and a lot scarier for our family. As soon as our son, Jesse, could walk, he was wandering.

Before autism was on our radar, we just figured our little man was fearless. For the first year and half of Jesse’s life, we lived in a converted shed on the 50-acre farm of my husband Kerry’s parents. It didn’t matter what time of night or day it was — if Jesse decided he was visiting his grandparents up at the house or going for a walk with the dogs to the dam or over the ridge, he was off. None of these instances on the farm ever resulted in Jesse being hurt or in any real danger, and the dogs usually alerted us to the fact he was wandering before he’d gotten far.

Jess has always stayed with his Ma and Pa or his Nanna’s for visits, and I’d continually ring and check on him, especially if it was a sleepover. I used to ask Ma or Nanna to make sure doors were locked and furniture was blocking all exits. We didn’t have a diagnosis at that stage, and I’m sure they thought I was being a tad overprotective. When the wandering continued, I knew it was more than a little boy’s fearless curiosity to explore.

The scariest wandering incident we had was when we’d just moved into our new place and was Jesse 2 years old. I was at work and Jesse was at home with Dad, who was on the mower at the time. Our 2-acre property is surrounded by bush. Kerry said one minute he was there playing in the yard and the next he was gone and so was the dog, Randy. Kerry called his parents for help first, who must have dropped everything, jumped in their car and made it over in record speed. I still remember the fear and panic in his voice when he called me at work and told me he couldn’t find him anywhere. I knew it was bad because Kerry was almost crying, just repeating over and over, “He was just there, where could he have gone?” My stomach dropped to the floor; I’ve never been more scared in my life.

Luckily in the 12 minutes it took me to get home, Jesse had been found. It turns out Jesse and the dog had walked 700 meters behind our block in bushland, through electric fences to a neighbor’s property. The neighbor picked Jesse up and walked him back out of his place and onto the main road where Kerry’s parents spotted them. We were so lucky for so many different reasons in this situation. My heart races every time I think of that day; it’s racing now while I’m writing this.

Unfortunately, wandering is something that might have to be on your radar when you have a child with autism, even if you’re somewhere you regularly visit, like school or your local shops. Even today at 6 years old, I still have to be careful with him. Jesse knows he’s not allowed near the road at home, and for months, he wouldn’t go near it. Then out of the blue, we’ll find him halfway up our street, saying he’s following the dog, although I’m pretty sure it’s the other way around. Jesse will sometimes remind me to stop and look for cars when we’re out, and other times he’ll step right in front of traffic.

The only way to manage and limit the possibilities of occurrences is to find controls that work for your child. I’d advise parents to adopt a checklist of things to tick off when at home or going out in public, especially to a new environment:

  • Dress your child in bright colors or consider an ID bracelet.
  • Ensure your house is child-secure — we have door handles, locks, heavy deadbolts and permanent security window screens. I always make sure everything’s secure.
  • Talk to your child about dangers. I use social stories with Jesse, especially in new environments.
  • Tell family, friends and schools you have a wanderer so they’re aware and alert.
  • Tag-team supervising duties with your partner. Jesse’s dad and I constantly check in with each other at home and out, and we’ve developed our own sign language for communicating Jesse’s movements.
  • Know your child’s triggers. Jesse loves water and animals, so if either of those two triggers are around, I have to be extremely vigilant.
  • I’ve also heard small tracking devices on children might help with extreme cases.
  • Most importantly, when you’ve lost your child, get help. Tell people, notify authorities and get as many eyes out there looking as possible. Sometimes we panic as parents in these situations and don’t think clearly, which is absolutely normal and understandable, but maybe not the most practical approach.

But it’s also important not to beat yourself up too much over these situations. Instead, learn from them. As parents of children with autism, we can be our own worst enemies. I’m still learning not to be so hard on myself and take mistakes as personal failure. We won’t get everything right, but that’s OK as long as we keep loving, learning and going forward for our little ones.

Jesse is definitely getting better as he gets older, but my overprotectiveness is well and truly ingrained and will be something I probably do well into his teens, much to his and his father’s disgust — but that’s another hurdle for another time.

Follow this journey on Jesse’s Mum.

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