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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“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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To the Other Parents Who’ve Heard About ‘That Kid’ at School

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When my son was still in a public bricks and mortar school, he did a lot of things that others would find odd and unexpected. You might see him doing different things like shouting in the office, but that’s just it. That’s all you would see. And you might have some thoughts about why that was happening, but you wouldn’t really know what was happening unless you knew me or asked me.

What you didn’t see is the number of times he was trying to let his support person know what he needed. What you didn’t see or know about is the strict boundaries that were placed on him, which sometimes didn’t make sense even to me. What you didn’t see is me coming to pick him up 30 minutes later, because there was no point in him sitting in the office for the remainder of the day.

You wouldn’t know how many phone calls I made to the school and to the district helping teacher to try and get a plan in place so my son could be a part of his school community. You wouldn’t know my son thrives on consistency, and the last-minute changes in staffing threw him off.

You wouldn’t know how hard we had worked to get our son to where he was, and that we experienced a glimpse of success only to have supports changed and withdrawn. His success did a nosedive, and we had to try to start all over again.

For the parents who don’t have a child with special needs and are here because you want to know more about our experiences, I celebrate you. I cherish that you want to know more, that you’re curious and you want to support us. The truth is, I fought hard so my son could be a part of his school community alongside your child. Not so he could hurt them or disrupt them, but because he needed a chance to be a kid. He wanted to be there, and I know he could have still been there had I simply not gotten exhausted and given up trying to get appropriate supports in place. (Not that this was a bad thing; we’re in such a better place and space for learning now.)

I know it can be hard to have kids who struggle in our schools, especially when they’re not getting the support they need. But I want you to know that we can’t give up on these kids. If you know of a child who is struggling, ask the parent if there’s something you can do to help or if they would like to chat about their experience. You could start with “I hear it is really tough to get children the support they need in school. I’d like to understand more.”

Talk to the teacher or principal and ask for the child to receive the support he/she needs so all kids can benefit from learning from and with each other.

If your friends start talking about “that kid,” try asking an “I wonder” question. I wonder if we know the whole story? I wonder if the parents have tried to get support for their child and been turned down? We need to remind ourselves that everyone deserves a chance. And we need to dispel the myth that parents aren’t doing anything to help their kids because most of us really are. It just isn’t known or seen.

I appreciate everyone who has joined us and supported us on this advocacy journey.

Follow this journey on Champions for Community Mental Wellness.

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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Dirty (and Not-So-Dirty) Secrets of Parents of Kids With Life-Limiting Illness

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It has been 11 years now on this journey with my son, Brendan Bjorn, my angel boy who has a life-limiting illness. But to be clear, those aren’t your typical 11 years. You see, when you are a parent to a child with a life-limiting illness, each year is multiplied in some mystical, cosmic way due to the many challenging experiences usually happening on a weekly, if not daily, basis. Those often unimaginable trials by fire that harden our resolve in ways not faced by parents of healthy children.

I want to reveal some secrets about us parents who have a child with a life-limiting illness. This won’t be news to us, but it will hopefully reveal some of our “secrets” to you, our family and friends, so you can understand where we’re coming from a little bit better. Maybe. Just maybe.

Personally speaking, I’m an observer. I love to watch people, study their reactions, read their body language and use empathy to understand their place in the world. My professional background is that of a Master’s-level mental health counselor specializing in child and family work. Enter then being thrust into this journey with Brendan and 11 years of those trials by fire. Result? Countless lessons learned, and the hope that sharing those lessons will help others along the way.

This is where some of our secrets come into play.

Secret #1: Many of us wrestle with depression and anxiety. And I’m not talking about being disappointed that the Irish rugby team lost last Sunday. I’m talking about hard, cold, all too real depression where you don’t want to get out of bed in the morning and face another day. I’m talking about anxiety where you can’t catch your breath or when you lose your temper at anyone for saying the most innocent of comments you just happen to have taken up wrong. We need you to know this is real. We probably won’t tell you about it, and we may not even admit it to other parents in our shoes, let alone to our partners. But it’s real… and we need your help at times.

Secret #2: Many of us might be on antidepressant medication. It’s OK. We aren’t “crazy” or “mad” or “going to go off the deep end.” We are merely trying to hold it together in the face of knowing we will one day be burying our own child. Yeah, that is hard to read. Trust me, it’s damn hard to type as well. But at the end of the day, it is the truth. We need you to remember that is our journey and our daily world.

Secret #3: There have been studies done that suggest parents of children with special needs might experience what’s described in psychological diagnostic terms as PTSD. Can you imagine? The same symptoms as many soldiers who come home from a war zone. This is actually a “secret” fact that many parents on this journey haven’t even heard, but hopefully once they have, there will be a sense of relief, as in, “Wow, OK, so that’s why I feel and/or act the way I do at times.” We can have nightmares, panic attacks, bouts of sudden anger, you name it. It is very real. (And here is where I strongly encourage any of you experiencing any of these concerns to please seek out professional help in your area. Reach out for help, please. There is no shame, and it is no sign of weakness, to admit you need a hand. This is a hard, heartbreaking journey we are on at times.)

Secret #4: Sometimes the way we deal with all of the above mentioned secrets is to comfort eat. Yeah, that’s right, bring on the most delectable comfort food you can dream of; that is all too often our way to unwind. Well, that and wine. We seem to keep the wine industry afloat. Did I mention coffee yet? Just keep a steady supply of both going. Please and thank you.

I will end with this last one because after all, I can’t be divulging all of our secrets at once, now can I?

Secret #5: Sometimes we talk too much once we get the ear of an adult who is a non-medical professional. What a treat that can be! Other times we crack jokes at inappropriate times. And sometimes those jokes are a bit off-color. Let us! Why? Because we can go days, literally, of not speaking to another adult other than the aforementioned medical professionals. And that, my friends, is not pleasant.

So, bring on the wine, coffee, fantastic scrumptious food — and without mention of calories, please. A side of antidepressants if required. And loads and loads of understanding, hugs, and off-color jokes.

Follow this journey on Transitioning Angels.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? 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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The Secret I’m Ashamed of as an Autism Mom

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As an autism mom, I probably have a ton of secrets I don’t even know about. I don’t realize they’re secrets. But one stands out, and I’m not proud of it. I desperately want to be perfect, superhuman and without emotion. I want to be unabashedly proud 100 percent of the time. I want to stand up, stand firm and stand strong always. The truth is that’s not possible. I’m not perfect or superhuman. And I definitely have emotions. This secret shames me, even though it shouldn’t.

I’m sometimes embarrassed by my son’s behavior because of his autism, and I’m mortified by my embarrassment. That is the cold, hard truth as they say.  Whoever “they” are. I’m not, by any means, embarrassed by his autism. I need to make that clear. It’s not all of the time or even most of the time. It’s probably 1 to 2 percent of the time realistically.

And it’s the negative behavior that’s embarrassing, not his autism. It’s the screaming in the middle of the store. It’s when he throws himself across the floor at school, because I didn’t try to prevent the meltdown — I fought it. It’s him turning 8 and having behaviors that aren’t typical of an 8-year-old. At 5, a meltdown isn’t as obvious. At 8, it is.

And I hate it. I hate myself and that emotion. I hate that I let other people’s opinions or glances get to me. I can feel it coming, and I work hard to extinguish it as quickly as possible. Because it doesn’t help anyone, especially my son.

But I would be lying if I said it didn’t exist. I would be lying if I said it never crept in and engulfed me every once in a while. Usually I don’t notice or care if others are watching. I almost like it because maybe they’ll learn something from staring. Maybe they’ll see a mother love her son who has a disability. Maybe they’ll learn to be more tolerant. Maybe. I just don’t care. Most of the time. But, sometimes, I do. I confess.

I think many moms with kids with disabilities like myself might judge ourselves by a higher standard. A “typical” mom would probably be embarrassed if her child threw himself across the floor at school. But a special needs mom immediately feels guilty for that embarrassment. We feel guilty for a somewhat typical emotion. What could I have done to prevent it? What could I have done to help my child deal with the situation? How could I have eased his pain? How dare I be embarrassed because my child can’t help it! Then the overwhelming guilt pours over us like molasses, almost paralyzing us and impossible to wash off, hindering in the crevices for days or weeks…or years later.

It’s OK moms (and dads). We’re human. Our kids are often embarrassed, too. Next time we’ll be better. That will help all of us.

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The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? 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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To the Special Needs Parent Feeling Anxiety About the Unknown

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To the new special needs parent,

I was like you once, overwhelmed with sadness, anger, guilt, fear and anxiety regarding the unknown. The anxiety was so strong and overwhelming that it became an extension of myself. Questions whirled around in my head in what seemed like a non-ending loop: Will he walk? Will he talk? Why did this happen? How will we get through this? How will this affect his older brother? Will my marriage survive? Is he getting enough therapy? Is he getting too much therapy? Should I go back to work? Should I stay home?

I’m not going to lie — in the early days, I cried a lot, I slept very little and I isolated myself from my friends, family and even my husband. I felt alone in this new world, ostracized in this new life I did not recognize as my own. I struggled every day to reconcile the need to prepare for the worst and the need to hope for the best. I struggled every day to keep my head above water when it seemed like life just wanted to drag me down. I struggled every day to see the light at the end of what seemed like a long and dark tunnel. I’m not going to lie and tell you that one day the clouds parted and everything miraculously fell into place, because that only happens in the movies.

Yes, this journey will take you to difficult and unchartered terrain, but it will also take you to amazing and beautiful places. This journey will shed your expectations and notions of what it means to be happy and teach you to appreciate the little things in life. In the two years since my journey has begun, my son has taught me the true power of acceptance, compassion and love. I’m a better and stronger person because of this experience.

I will tell you that it’s human nature to project and overestimate the hardship we face, while underestimating our ability to cope. Our stories and experiences may all be different, but we all share one thing in common: thousands of years of evolution that have provided us with a genetically hardwired instinct to protect and nurture our children. MRI studies have even shown that a mother’s impulse to love and protect her child appears to be hard-wired into her brain.

Humanity has survived for thousands of years thanks to this instinct and our innate fight-or-flight system, which when faced with danger triggers the brain to secrete stress hormones, increasing our strength and alertness to deal with the perceived threat. For special needs parents, the perceived threat can be a part of our daily existence. In fact, one study showed that mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers. However, despite all of this, these mothers were just as likely to have positive experiences each day, volunteer or support their peers as those whose children have no developmental disability.

So to you, new parent, I know you may still be wiping away the tears and struggling to see the light as everything is still fresh and new for you. But know that like the many parents who have come before you, you are resilient, you will grow stronger every day and not only will you learn how to cope — you will learn how to thrive in your new environment.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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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