10 Things I Have Learned as a Mother of a Child With Apraxia

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People often ask me to describe what I’ve learned as the parent of a child with apraxia. It isn’t always easy to put into words. In fact, lately I have been struggling on this journey — with highs so high I’ll remember them forever and lows so low I feel I’ll curse the word apraxia and the first person who ever uttered it to me. When our son was first diagnosed, everything I heard, everything I read, scared me. Now I have a bit more perspective and experience. Here are some of the things I’ve learned:

1. There will be setbacks.

Your child might “lose” words. Words that you worked on for months, if not years, to gain. It can feel defeating. However, please know it is OK, those words will come back. It may take a little while, but they will. Also, as they develop language, many children will go through dysfluency, which sounds similar to stuttering. It can be incredibly frustrating for the child and heartbreaking for the parent. This was the source of my dawning comprehension that things wouldn’t always move in an upward direction.

2. Patience is important.

As frustrated as you may become with your child’s progress, therapists, the school system and your family, try to have patience. Your child needs you to be patient and determined. It can be very difficult, but I have found it to be absolutely necessary. Patience will give you clarity and the ability to address each situation in a way that you will hopefully have a more positive outcome.

3. Don’t get stuck on a therapist.

It would be a perfect world if the very first therapist you went to was amazing, determined, connected with your child and you adored him or her. Therapists aren’t there to be your or your child’s friends. They are there to help your child speak. Do not lose sight of that. Progress is critical. If you are not seeing or hearing progress in a reasonable amount of time (several months), move on.

4. Endurance is critical.

This isn’t a sprint; it is a marathon. Apraxia, unfortunately, isn’t going anywhere. It is here for the long haul. Your child’s needs and progress will develop and change, but apraxia is always there. For us, it rears its head when our son is sick or hurt and he can no longer tell us what is wrong. You might be reminded how difficult it was for your child to master those first words when you watch him or her struggle with reading, writing, or math as his or her peers sail by. Help your child set the pace for the marathon ahead.

5. Longevity is to be expected.

I wish I had started explaining apraxia better to others early on, but back then I did not fully understand the world into which we were entering. I would love it if people in my son’s day-to-day life grasped the work ahead. Your child might always need support for apraxia. Others hopefully will understand it’s a lifelong diagnosis, not an easy fix.

 

6. Speech is not a “fix.”

Now that my son speaks, most people believe apraxia is a non-issue. They are unaware of how many hundreds, if not thousands of hours he has spent in therapy — how many hours he still spends in therapy, something that won’t be changing for the foreseeable future. If anything, we will only be adding new types of therapists to help with academic challenges. Speech is not a “fix,” and apraxia needs don’t end with its emergence.

 7. Your support system may not be who you imagined.

I think it is natural to believe your family will be just as invested in your child’s progress as you are. We may tell ourselves our friends’ hearts understand ours as we digest this new part of our life. Well, sometimes they don’t — at least not for the vast number of parents I hear from. I do know some people who have great support close to home, but for many of us that is not the case.

Many of us will have people that appear out of nowhere to offer support. They may be acquaintances, people you reconnect with from your past because they can relate, members of an online support group (which I highly recommend joining), or parents of your child’s friends. Whoever they are, those individuals seem to always be celebrating your child’s successes and feeling your pain on those not-so-great days. Hold on to those people. Tell them how much you and your child appreciate them. They are critical pieces of the puzzle that is your child’s life — and yours, too.

8. Your child’s therapists might become like family.

Your child’s therapists, specialists, tutors and anyone else he or she ends up needing may become closer to you than some of your family or friends. Our son will be 6 years old in a couple of weeks. He is having his first real birthday party with friends. The very first person he asked to invite was Mrs. Rachel. She was one of his first speech-language pathologists, and they worked together for years. They have a bond like nothing I have ever seen. He adores her, and she adores him right back. I think he knows how important she was for him on this journey. Their connection is strong and genuine. He loves and is close with his two occupational therapists as well, but there is just something about the wonderful Mrs. Rachel. Don’t be surprised by the strong and enduring relationships your child develops with some of the people with whom he or she works.

9. Celebrate the successes more than you grieve the setbacks.

It is human nature to think about what is going wrong or what you feel has been taken away. However, try not to dwell on these things too often or for too long. It is a vicious cycle. We all have low times, and that’s OK. Instead, try to focus on the progress, the relationships your child has formed. Reflect on how your journey began and what you have accomplished since then.

I have videos of my son I can watch, and they serve as an instant reminder of what the beginning of his journey looked and felt like. I also keep a three ring binder with every evaluation and IEP in date order. I find it soothing to be able to go back and read all of his evaluations and compare them to today. It reminds me we are headed in the right direction. It might not always be as quickly as I would like, but we are still making progress and achieving goals.

10.  Every child deserves a voice.

Recently, I woke up to find my son had randomly pulled my Childhood Apraxia of Speech Association of North America, (CASANA) magnet off of the refrigerator. He had traced it and wrote, to the best of his ability, “Every Child Deserves a Voice.” I asked him if he knew what that said or what it meant. He said no. I explained we bought that magnet at the apraxia conference in Texas, and I read it to him. His response, “But Momma, every child does deserve a voice.” Of course I was teary-eyed and took to Facebook to share my joy. I received several messages to tell him “Good work!” and “I am proud of you!” There were also messages to me saying I am a good mom and to keep fighting. As silly as all that may seem to some people, it was everything to me. Those friends “showed up” and supported my child — they supported me. These simple messages reminded me of the marathon we are undertaking and gave me the extra strength I desperately needed. Your child does deserve a voice, and you will help him or her find it as best as you can and by any means possible.

Despite knowing all of these things, I have still been feeling anxious and overwhelmed by my son’s impending transition to first grade. He is scared — terrified really. He says they have tests, new teachers, not as much recess, and he won’t have anyone to help him because his friends might not be there. For parents of children with disabilities, we are just as terrified as they are and struggle to find the right words to comfort and reassure them. The closer we get to the end of the school year, the more my son has been talking about it and expressing his fears. I am scared of what the future holds.

What I am trying to keep in mind is that this is part of our apraxia journey. It is the next road we have ahead of us, and we will tackle it just as we have all of the others. I tell you this so that you understand that the obstacles and the therapies will change, but your grit and determination will help pave the road for your child’s apraxia journey. Do not forget to live life, try not to let it live you.

Follow this journey on Apraxia Momma Bear.

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Thinkstock photo by yaruta

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To the People Who Assume I’ve ‘Stolen’ My Disability Parking Permit

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I can walk, but I can’t walk very far, and it’s always with pain and fatigue. I can stand, just not for very long. I use a mobility scooter — a small version of an electric wheelchair — and walking sticks. 

Limited as my mobility is, I’m still made to feel like a faker. I don’t look sick enough. I don’t look disabled enough. I’m too young.

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If I get these comments when using medical aids, imagine what happens on the rare occurrence that I don’t use my aids and park in a disabled space, which I’m legally entitled to use. You got it. All hell breaks loose.

Just because I don’t fit society’s view of “disability” or conform to how a sick person should look and act. The much-used universal symbol for disability — the wheelchair — doesn’t always reflect reality. The definition of disability is often pigeonholed as someone requiring a wheelchair, or, at the bare minimum, crutches.

It’s so much more than that.

Painful, invisible conditions exist that entitle a person to a disability parking permit. Unfortunately, as has been demonstrated all too often of late, these invisible conditions are often assumed illegitimate by strangers. We are branded as fakers and con artists. Told over and over that we don’t look disabled enough to be entitled to a disability parking permit.

Take the recent story of Justine Van Den BorneWhen Justine, who was diagnosed with multiple sclerosis at 35, parked her car in a disabled space at a shopping center in Melbourne, Australia, she had no idea she would return to see a nasty, anonymous note stuck on her windshield that read, “Did you forget your wheelchair?” It was placed directly above her disability parking permit on the dashboard.

How could this be? Simple: Justine walked into the shopping center.

Our opinions and conclusions are greatly influenced by what we see. If someone looks healthy, they obviously can’t be too sick, right? Too often these judgments are completely wrong. I ask you this: Would you like to stop breathing on the idea that air, being mostly invisible to the naked eye, isn’t a real thing? No, I didn’t think so!

Invisible illness, ghost illness or whatever terminology you want to use, manifests internally, affecting the body from within. Many don’t understand what an invisible disability is really like for a person. Extreme fatigue, chronic pain, disorientation, dizziness, vision impairment, difficulty with mobility, cognitive issues, neuralgia…the list goes on and on.

We smile, we laugh and we get on with things, trying to live each day to the best of our abilities and be happy. Know this though: Despite my apparent healthy appearance and sunny disposition, I am legally disabled. I am battling a daily struggle. I am restricted by chronic pain, fatigue and neurological dysfunction, including numbness, weakness and intermittent spasticity in my limbs.

As I recently described in a conversation to my doctor: “My right leg has been numb from thigh to ankle for the past three weeks; my hands are tingling and short-circuiting like a failing strobe light; fatigue has knocked the wind out of my sails; pain is having a party at my expense; the nerve burn is kicking into overdrive in my arms…you want me to keep going?!”

These symptoms aren’t always obvious to the untrained observer, so even though my life is far from normal, I’m often mistaken for having a perfectly functioning body.

And I’m persecuted for it.

We need to start assuming the best of people instead of the worst. Don’t jump on a person with a disabled parking permit just because the driver or passenger isn’t in a wheelchair.

As Justine, who took the note as an opportunity to raise awareness for invisible illness, posted on Facebook: “I am sick of people like yourself abusing me on my good days for using a facility I am entitled to.”

If you see a disability parking permit but don’t see a wheelchair, don’t adopt the negative stance and assume the person has stolen it.

Yes, I understand that faking disabilities can and does occur, but I choose to believe that the number of instances is relatively low.

We need to advocate for the rights of the disabled community, but abusing people over a parking permit they are legally entitled to use is not the way to go about it.

Reporting the Ferrari double-parked across two disabled spaces without a disability parking permit might be a better place to start.

A version of this post originally appeared on Starbrite Warrior.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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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When a Friend’s Brave Act for My Son Knocked the Wind Out of Me

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My son, Caleb, is a looker. He’s only 5 years old, but at 36 pounds and nine surgeries, he’s a real head turner. That wasn’t always the case (says his mom who doesn’t believe a word of that). Even at 2 pounds soaking wet and not at all ready to brave the world, he was gorgeous to me. It took my son a few months to look like a real baby, but he came around. That scary NICU place let him out after seven months, and our days of surgeons, scrubbing in and gown-wearing were over. That feeling was actually short-lived but that’s another story.

One day, I found myself the victim of the proverbial rock and hard place. Our medical supplier called to say our coming shipment was denied due to insurance changes (non-fixable by me and with a full one day’s notice!). I’ll spare you the details and just say it was a nightmare. What does any mom in this situation do? My son’s shipment literally contained his nutrition, the one and only thing he “ate,” his tube-feeding formula. After the phone calls, tears and offers to trade kidneys, I turned to Facebook.

In my desperation and spilling of all emotions to a group of moms who would “get me,” I didn’t realize the settings of the group were open. That means all my friends saw my sad, desperate plea for help from other moms who might have extras of this particular formula.

Let me gently remind you — my horrifying problem involved my infant son not getting his only source of nutrition, his specialized formula, to my house. No, I couldn’t feed him something else, and no, I couldn’t buy it myself. A box of six cans was over $200 or more. At the time, it was the only thing he could get through his g-tube, and it was cost-prohibitive for us.

Jessica’s son

Then there was this friend… Delaware is lucky to have her. 

Remember how everyone saw my hideous post screaming to the winds for help? My friend, Jessica, saw the post and helped in a way that knocked the wind out of us.

Her son was in the NICU facing IUGR (intrauterine growth restriction), liver failure and coagulopathy (a condition that affects blood coagulation), and even so, she showed an incredibly generous and brave heart.

She saw my post and sent the information of the formula my son needed along with our address to several of her friends and family she thought could help. Explaining our situation, she told them if they could buy and send us the formula, to please do it. No yes or no answers needed to her email.  Jessica told them if financially they could help, to just do it. And did they ever.

Let me spare you the ugly-cry details, but that one Facebook interaction fed my son for months. Within two days, boxes of formula arrived at my doorstep.

The brave, generous and incredibly bold act she took upon herself to reach out to others, and even dig out of their own hearts and wallets to help my family — well, that just changed my life. I saw what the power of desire could do for the better. By the time our insurance situation was fixed, over a month had passed. Sometimes I still wonder… what would I have done otherwise?

Years later, I’m still moved that most of the kind souls who helped us in times of need didn’t know us from Adam or had never heard of my son’s medical conditions. (Caleb has short bowel syndrome, pulmonary vein stenosis and hypertension and gastroparesis.) They just sympathized with another hurting human being.

I try to make a difference wherever I go, because I remember that generosity of spirit. It was more than opening their wallet to my family; they opened their hearts to my son’s heart and literally his stomach.

Give a smile, a dollar, a handshake or hug. If it’s in your hand or heart to help, do it. Even in the most unconventional way, you could change a life. Because I’ll never forget that time my friend used Facebook to feed my son.

Caleb and Noah

Follow this journey on Hey Little Fighter.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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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4 Ways to Be a Good Friend to Someone Dealing With a Health Issue

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As I learn how to navigate this new pathway of living with disease, I’m realizing some folks naturally seem to know how to step up and be a friend in this difficult situation, while others mean well but struggle to know how best to help and be supportive. So here are four things you can do to be a good friend to someone with a disability or disease.

1. Love us.

While disability may impact who we are, we’re not defined by that disability. We are people, just the same as someone with a crooked smile or flyaway hair. See us for who we are and love us for our hearts and inner selves. There is much to love about us, from our quirks to our kindnesses, from our hobbies to our pet peeves. Yes, this still involves our challenges, but who doesn’t have challenges? When it comes right down to it, just love and care about us the way you do all your friends.

2. Learn about our conditions.

It means a lot to us when our friends take the time to read up about our disabilities or illnesses. Educating yourself about our conditions has many benefits. You’re likely to better understand why we do (or don’t do) whatever it is we’ve been doing. It might help you to know ways to offer assistance or just allow you to talk with us about what’s going on with our health. If you have a question about our condition, ask us. The gesture of learning about what ails us is touching and shows us how much you love us.

3. Listen to us.

Sometimes we just want to talk about our troubles. These may or may not involve our medical problems, but if they do, please listen. It can be hard to find someone to discuss things with when your health is dicey. Pity and dismay isn’t really the kind of reaction we’re seeking. Neither is it helpful to be assured it must be nothing when it’s something that’s important to us. Mostly, we just want a friend who will listen and give us their attention and understanding. We want a friend who will make no more of what we say than we do. Sharing our challenges isn’t a plea for being coddled — honest! Our feelings need to come out, and having a safe person to confide in can mean the world.

4. Live your lives with us.

What do you like to do? We probably like to do that, too. How do you live your life? We do the same things. These are opportunities to connect, to spend time together and to offer the company of a friend. Sure, we might regretfully decline an invitation, but that doesn’t mean you shouldn’t invite us the next time. Or the time after that. Even small things are worth doing together. A movie night on a couch can be just as fun and fulfilling as a movie night at the theater — maybe more so. Spending time in the kitchen laughing and talking is absolutely invaluable. Live your lives with us and include us even if you aren’t sure what we’ll say yes to. It will mean so much that you have included us.

Perhaps it takes a little more effort to be friends with someone dealing with a health issue. Or maybe once you begin, you find it’s easier than you thought. There really isn’t a secret formula except to just be a friend. We’ll do the same for you. When all else fails, let’s talk. Let’s plan. Ask us how to help, and I bet any of us would be happy to share our thoughts and ideas. Friends are jewels in life who are to be treasured, especially in times of trouble. So let’s be friends!

Follow this journey on Lupus Rhythms.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

Lead photo source: Thinkstock Images

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To the Parents Whose Child Has Just Been Prescribed a Restricted Diet

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It feels so hard… at first. It feels like the purest definition of overwhelming because it is overwhelming: the beginning of a life lived without what may feel like one of the foundational foods of your family’s diet.

Maybe your child has just been diagnosed with a food allergy. Maybe it’s celiac disease, lactose intolerance or something rarer and harder to explain. Whether it’s a lifelong restriction or a temporary one, the thought of reading labels, re-thinking your family’s mealtimes and being vigilant about whatever your child puts in her mouth seems like a lot to manage right now.

The first thing you might want to do is start searching for replacements for what your child is not allowed to eat. You may want to begin with the one-word suffix “-free.” Gluten-free, dairy-free, egg-free, nut-free – that “-free” word will initially pepper every corner of your consciousness as it plasters itself across the labels of the foods in your pantry and refrigerator. However, before you look for those items, I suggest a different approach:

First, look for the things in your existing diet that already work.

When my already-vegetarian daughter was asked to follow an elimination diet that completely removed dairy, eggs, soy, nuts and wheat from her life, it seemed there was nothing left. However, when we began to look at our average week, there were several meals that worked already. Beans and rice were fine, for example. So was our favorite chickpea soup. Every fruit, every vegetable. We began to marvel out loud at how many things could be made from potatoes.

When I realized there was a place to start, I took out a notebook and opened my cupboards. No matter the item, if it was something she could eat on this diet, I wrote it down: canned mushrooms, lentils, all our spices, artichoke hearts, quinoa, five kinds of rice, Jello mix, sugars, pickles, on and on. I listed every single “yes” in my pantry, and then I moved onto my refrigerator, where I found every vegetable and fruit, salsa and hummus, jam.

From there, I moved onto the meals we could recreate with only minor tweaks. Pasta with butter and cheese was recreated with gluten-free pasta, olive oil and fresh herbs. Many of our favorite morning cereals could stay once we found a nondairy milk we liked. With a quality thermos for her lunchbox, every dinner I’d discovered already worked could become the next day’s lunch

By the time I was done, I had three pages of “yes” items in my notebook. I sat on the floor of my kitchen with a stack of sticky notes and every cookbook I owned. I labeled promising recipes – yellow stickies for the ones I could make without a trip to the store and white stickies for the ones I could make once I’d purchased some substitute specialty items.

Then, finally, I sat down at my computer and began searching for substitutions. I began with the things I needed to complete the recipes we already liked, searching for the best gluten-free pasta, the most effective egg replacers, something that would approximate soy sauce. I joined some discussion groups and asked questions. I started a folder of “Elimination Diet” bookmarks in my web browser.

Within three days, I had a game plan: a list of meals to try, a cabinet full of new experimental items, a mindset shift that made an enormous difference for our family.

In the end, these diets are still hard. They still require vigilance and planning, and as a parent, you still need to know – and memorize every variation of – the foods on the “no” list. However, starting from the perspective of what does work makes an enormous difference.

Hang in there, parents. You can do it.

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The Mighty is asking the following: Write a letter to the parents of a child with your disability, disease or illness. What do you wish they knew or better understood? What words of advice would you offer based on your own experiences? 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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Parents Are Pressuring Lego to Make a Disability-Inclusive Christmas Set

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These parents are trying to send Lego a message the company can’t ignore.

Toy Like Me is a parent-run social media campaign calling on the toy industry to produce toys with disabilities. The group, formed in April, started a Change.org petition asking Lego to create a set that featured figures in wheelchairs in a setting other than the hospital. The petition got nearly 19,000 signatures, but the organization says their request was ignored. Now, with the holidays approaching, they’re trying again.

Toy Like Me has submitted to the Lego Ideas platform, a place where people can upload and vote for new Lego design ideas, a set of holiday-themed figures in wheelchairs. The figures come with accessories like Santa beards, wands and white canes. It’s called “Christmas Wands ‘n’ Wheels.”

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Courtesy of Toy Like Me

The organizers are urging people to visit the ideas platform and vote to make the toy set a reality. According to the Lego website, if a project receives 10,000 supporters, it automatically qualifies for a project review by a board of set designers and marketing representatives.

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Courtesy of Toy Like Me

“For a child with an impairment it would be hugely affirming to be reflected by a brand like Lego,” Toy Like Me co-founder Rebecca Atkinson said in a press release. “It says that the brand is behind them, believes in them and that they are part of the mainstream. For children without a disability, seeing a brand like Lego celebrate human difference helps to create a more positive attitude when they meet someone with an impairment in real life.”

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Courtesy of Toy Like Me

Toy Like Me says Lego has yet to respond to the campaign’s multiple challenges on TV, radio, email and social media.

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Courtesy of Toy Like Me

In July, Lego released a Duplo Community People Set, a collection intended to educate young children about a variety of different people and occupations, featuring a person with a disability. The figure was an elderly man in a wheelchair, which Toy Like Me says furthers misunderstanding about disability as well as the stereotype that it’s something that only affects the elderly.

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Courtesy of Toy Like Me

“Lego has huge cultural sway,” Atkinson said, “and the power to really change perceptions. Children look up to global brands like Lego and learn through them. But if these brands don’t include positive disability representation, then what are they teaching children? That exclusion is OK in real life?”

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Courtesy of Toy Like Me

The organization hopes Lego will soon be the latest to join the ranks of Playmobil, Orchard Toys, Lottie and Makie dolls, who have already answered the campaign call for positive disability representation in toys. Playmobil is now working to produce a line of characters that positively represent disability, to be for released in 2016/17.

Go here to vote for “Christmas Wands ‘n’ Wheels” on Lego’s idea platform.

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