Our Family Secret That Made a Difference In My Son's Health

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If you’ve come to our house lately you may have noticed some changes. There are signs all over food in our kitchen saying, “Jack only” and there’s a lingering smell in the air.

We had someone working on the alarm system last month and he asked me what kind of tea I was making. When I told him it wasn’t tea, he said with a big smile on his face, “I didn’t really think so.”

I reacted by doing what I’ve done for the last six months. I just politely smiled and changed the subject. I haven’t wanted to discuss it, feeling people might judge, but last week I was forced to disclose our family’s little secret.

Wheeling Jack through the airport in Miami, we were stopped at security and asked for our boarding passes and IDs. I handed over our boarding passes and my husband and I each presented our driver’s licenses. The guard looked up and said, “What about the kids?”

Unless traveling abroad, we’ve never had to present any ID for the children, and no one had asked us for them on the way to Florida from New Jersey. “They’re kids,” I said, but as the words came out of my mouth I suddenly realized our son, Jack, isn’t a kid anymore — he’s 18. Crap.

“I’m sorry I can’t let him through security without a photo ID.”

“Sir, we don’t have one. I didn’t know he needed one. They didn’t ask us for one when we left NJ.”

“NJ should have asked. I really can’t let him through.”

My family was looking at me. The people behind us in line were glaring at me. I felt myself beginning to sweat (although that may have just been a hot flash). I started wondering which one of us would stay back with Jack and how long it would take to mail the passport, when I realized we did have something. I opened my wallet and pulled out the one form of photo ID I have for Jack.

“Will this work?”

The man took the card and held it under his fancy light. He then looked up at me as he called his supervisor over. They both looked down at the card, mumbling to each other (and giggling) then looked up, “OK, Jack. Have a great trip.” They each gave Jack a high-five as we wheeled him away.

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Apparently, medical marijuana cards are an accepted form of ID by the TSA.

My son, Jack, has a rare disease called Adrenoleukodystrophy (ALD). It has left him with a complicated and often uncomfortable life. Over the last year, I’ve read stories about people with ALD and similar diseases having success with medical marijuana (cannabis). I discovered cannabis has many very beneficial medical benefits: anti-nausea, suppresses seizure activity, anti-inflammatory, anti-anxiety, combats neurodegenerative disorders. All this with limited risks, and certain varieties do not even cause a “high.”

We’ve tried countless things to help Jack. There is no “Guide to Treating People with ALD.” We’ve tried everything from drugs designed for Parkinson’s Disease to speech therapy on a horse (it’s called hippotherapy and Jack loved it, but it got rather expensive). Marijuana seemed like it was worth a shot. Jack isn’t working any heavy machinery or driving, and we are not worried about pot being a “gateway drug.” After all, Jack can’t open the fridge by himself and he has already used Codeine and Oxycodone and Vicodin (and on and on) without issues.

So, I made an appointment with Jack’s doctor to discuss introducing marijuana to our list of medications. Even though I was confident it was a good idea, I still felt nervous approaching the subject; as if I was recommending that my son do something scandalous. But as soon as I mentioned it, Jack’s neurologist agreed and we started the process. Two more doctors (including a psychiatrist), $200, and six months later, we were mailed our medical marijuana cards and a list of dispensaries in New Jersey.

 

The day after receiving our cards in the mail, Jack and I found ourselves on a suburban street in a neighboring town going into an unmarked building to purchase our first batch of an experiment. We were greeted with warm smiles and an unexpected education. As rigorous as it is to get a medical marijuana card in New Jersey, once you get it, there is very little hand-holding by doctors or by the state. It’s up to you to figure out what type of cannabis to buy, how much to give, and how to administer it. For the last 10 months, I have been trying different varieties of marijuana, making oils and butters and baking treats for Jack. After all, Jack couldn’t smoke even if I thought it was a good idea. So, here I am, a suburban housewife, using the same oven that I’ve used to cook my Thanksgiving turkey, to make my 18-year-old son pot brownies and cookies.

Never in a million years did I imagine myself at 47 making pot brownies for my son. I’ve never been much of a baker or a “baker.”

I’d be lying if I said I never experimented with marijuana, and I’d also be lying if I said I never inhaled. Marijuana was around much of my high school and college years and has even popped up at an occasional dinner party in our suburban town, but I have always preferred the buzz of a little too much vino to the buzz of a joint being passed around a circle. And, as wild as my social life was as a young person, I’ve always been uncomfortable with breaking the rules. As mainstream as pot was and has become, it’s always been illegal, but that is changing.

There has always been a stigma attached to marijuana, and it’s because of that stigma that I waited for months before revealing our secret to our friends and extended family. I wanted to be sure I’d done all my homework on the topic and I wanted to be sure it worked. At first I thought I might be imagining it, but thanks to keeping track of doses, behaviors and sleep, we quickly found there was no denying the benefits of our new medication. Now our family is less and less concerned with that stigma. Since we have introduced marijuana to Jack’s list of medications, the positive results with sleep, appetite and spasticity have been profound and we are now solid in our belief that marijuana is a remarkable drug with a host of benefits. If it helps Jack, it’s likely to help others and we need to spread the word.

We are not alone. Recently, top scientists at the National Academies of Sciences, Engineering and Medicine weighed in on marijuana and its health effects. After considering more than 10,000 studies, they concluded that marijuana is helpful for pain relief, muscle spasms related to MS (a disease not so different from ALD) and for treating nausea and vomiting associated with chemotherapy. It’s time we all take a look at our medicine cabinets and realize they are filled with far more harmful things than cannabis. Our experience with Jack and having observed how cannabis is helping him, has convinced me more than ever of the fact that our country needs to see positive changes in policies regarding marijuana.

As of November 2016, 28 states and DC have legalized medical marijuana. That’s more than half of the United States. It seems like we’re heading in the right direction, but when I started working on our taxes, I found some disappointing news: “You can’t include in medical expenses amounts you pay for controlled substances (such as marijuana, laetrile, etc.) that aren’t legal under federal law, even if such substances are legalized by state law.”

Marijuana is still a Schedule 1 substance which means that, “It currently has no accepted medical use and a high potential for abuse.” Half of the US says otherwise! We can deduct all of Jack’s doctor’s bills and medical supplies, including personal care items, syringes, even all of the supplies for his service dog, but the $540 we spend for an ounce of cannabis every month for the medication that was prescribed by his doctors and is working can’t be included as a medical expense?

This is illogical and our society needs to adapt to what science is telling us. Medical marijuana works. Fortunately, our family has the financial resources to continue to have medical marijuana as part of Jack’s daily regimen, but many others do not have that luxury. When is the tax code going to catch up with science?

Now that we are outing ourselves as cannabis supporters, we are going to do our best to spread the word. Hopefully, if more people see the benefits of this medication, the laws will continue to move in the right direction. After all, if the TSA can approve a medical marijuana card as a legitimate form of ID, can’t the federal government see it as being a legitimate medication?

Follow this journey on Smiles and Duct Tape.

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How Gaining Knowledge About Neurofibromatosis Has Empowered Me

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This post was requested by the Children’s Tumor Foundation, whose mission is to drive research, expand knowledge, and advance care for the neurofibromatosis (NF) community. As this is an issue close to my heart, I was happy to write about it.

Recently, I was asked the following: “What’s one ‘survival tip’ you’d like to share with other people living with neurofibromatosis (NF)?”

So many things ran through my mind, such as dealing with bullies, hearing hurtful comments or experiencing painful days. How could I pick just one? But if I had to say just one thing, it would be: learn.

We’ve all been there before. You see a new healthcare professional, and while going through your chart, they look up and say something like, “Neuro what?”

It’s enough to tense the devil!

Back in the day, when meeting a new healthcare provider, I never said the word “neurofibromatosis.” I always said “NF.” It was a test and my way of determining if the person I was speaking to was knowledgeable or not. If they asked what NF stood for, I knew they were not qualified.

Neurofibromatosis has come a long way on the awareness trail. Unfortunately, there continues to be a void in the medical community, as many still do not know or truly understand what NF is all about.

However, if you think about it, isn’t it a bit unrealistic to think that every doctor, regardless of specialty, should know something about every disease and disorder?

Here’s food for thought: what if we viewed these exasperating situations as opportunities or as teachable moments? This is where my tip “learn” comes in and why you need to know what NF is all about.

You can be the teacher. You can be the smartest person in the room (at least where NF is concerned). Learn all you can about NF, be willing to teach others, and do your best not to get emotional if they don’t get it.

Now that I’m a bit older (and maybe wiser), I am making an effort to be a better partner in my care. When I get into a discussion about NF with an uninformed healthcare provider, I enjoy giving them a brief overview of the condition and how it affects me. More times than not, these exchanges have been positive.

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And isn’t that the ultimate goal? That interactions with the medical community are as pleasant and productive as possible and that they don’t turn into sparring matches?

Arm yourself with knowledge about NF because knowledge is power; knowledge builds confidence. Confidence will lead to other thoughtful questions and hence, more knowledge. Knowledge will make your doctor appointments more efficient, and knowledge will help you pick a doctor that is right for you.

The internet can be a great place to start. Stick to reputable science-based websites such as the Children’s Tumor Foundation, and do your best to steer clear of generic, cure-promising health websites.

Gandhi is credited with saying, “Be the change you want to see in the world.” While that may sound like an arduous task, it’s really quite simple.

If you want others to understand NF, then you must start with yourself.

We want to hear your story. Become a Mighty contributor here.

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How Learning Social Skills Can Help Autistic People

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There was a recent study where researchers used a fMRI machine to study brain regions responsible for social abilities on people with autism before and after a five week social skills camp (one hour, twice a week).

The results were groundbreaking. Social skills training actually does help improve emotional recognition. That means that teaching us how to interact with neurotypicals will make us better at noticing when we’ve upset them.

Do you have any idea how huge this is? It’s obvious to many of us that this is the case, because we tell each other this all of the time in our support groups, but science has made it official with brain scans and experiments. This has been a great month for autism awareness.

Social skills play a huge part of our everyday lives. People with autism often have difficulties interpreting others, causing misunderstandings. The sooner we learn the skills we need to cultivate relationships, the more successful we are as adults.

There is a lot of focus on making our lives easier by controlling our “symptoms,” but another aspect of autism is our difficulties with the social world around us.

Bullying on the Spectrum

I remember elementary school like it happened yesterday.

In first grade, I made friends with this kid named Micah, who would translate different social customs for me. He was the first friend who would do this for me, and his social status protected me for a little while.

I moved a few times between second and fourth grade. I found it hard to make friends and I constantly faltered. The end of elementary school was tougher because I wasn’t sure about the other kids. I would think that they were my friends and they would make fun of me, and once I figured out they didn’t like me I would just stop hanging around.  I spent recess doing solo jump rope.

Middle school was ruthless. We moved again right before sixth grade, and I remember my first day someone made fun of me for my accent and haircut. I stopped telling my parents when people were making fun of me because I felt like I was constantly complaining. We moved again and I managed to make some friends, who helped me navigate though teenage girl evil plots.

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63 percent of children on the spectrum experience bullying. These children will become adults, and they need those support services now, not later, because the sooner that kids get the social support they need, the quicker they’ll progress to emotional recognition. We need to get schools involved with changing policies and advocate for these children. The more apt they are to recognize their peers’ emotions, the less likely the are to be made fun of.

I believe this, combined with the anti-bullying movement, will produce peaceful, intellectual progression.

OK, so how do social skills affect empathy with autistic people?

Learning social skills is learning empathy. We don’t want to hurt people’s feelings, the same way a student doesn’t want to fail a test. When the student cannot pass the test, the teacher needs to teach the student in a way the student can understand. The very notion that teaching us about you will make us more apt to recognize your pain is the meaning of learned empathy.

The more skills I acquire, the more I’m able to see in “real-time” what’s happening with any one person. For example, I can see when someone is anxious based on risen shoulders, quickened speech, flushed skin. I just have to wait for a conversational exchange so I can hear if they are going to tell me about their anxiety or if the conversation is intellectual in nature.

Learning social skills made me quicker and smarter. When I’m not anxious about the situation, my brain pulls information so much quicker. Anxiety always slows me down. I can’t think straight when I’m emotional, and emotional includes being anxious because I don’t know what to say or do.

When I was younger and less “empathetic”, I used to “comfort” people who were crying to me by saying I wasn’t sure how what to do about them crying. And I would say it awkwardly with my hands like sort of waving, and a half laugh. Then I would reach out my arms like I was going to hug them, and then pull them back over and over because I don’t like to be touched when I’m uncomfortable — until eventually I verified if my next move should be a hug. It was a mess.

How to Help

Awareness alone is not enough. Neurotypicals have to educate themselves about autism and social differences to expect. People on the spectrum have to have acceptance. It’s a basic human need.

I believe in order for us to change the world together, we must first be willing to change ourselves. Both neurotypicals and autistic people alike must be willing to adapt our own thought patterns to those around us, and look outside our own perspectives. It’s important to accept each other’s quirks and flaws. Even if we aren’t born this way, we can learn.

Mindfulness is essential to change the self. Practicing mindfulness has health benefits, social benefits, and emotional benefits.

Are you on the spectrum? Do you force eye contact to make the neurotypical feel comfortable, even though it hurts and you’re suffering because of it? Do you refrain from stimming because you don’t want to seem weird, even though it’s tough to concentrate while holding it in? Do you choose to remain silent because you don’t want to make waves or be put on the spot, even though the subject is your special interest?

Don’t let social anxiety get in the way of you being yourself. In order to bridge a gap, both sides must build toward the center.

Are you interested in attending a camp like the one in the study? Here are some options.

Social Skills Camp Scholarship Program

 Follow this journey on Arianne’s Work.

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What I Would Tell My Younger Self With Cerebral Palsy, by Age

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Having CP has been a lifelong journey. As I look back, there are so many experiences because of it that have shaped my young life. In hindsight, it’s easy to say, “If only I could go back in time and tell my younger self this!” or, “If only I knew then what I know now!” Having cerebral palsy has given me the opportunity to live and learn in so many ways and at every age. If I could give the younger Annie pieces of advice, here’s what I would tell her: 

Age 4: You rock that butterfly brace, girly!

Age 6: Trust your mom and dad. Even when you’re scared in the doctor’s office or are frustrated by physical therapy. They love you so much and they will always have your best interest at heart. Be brave, kiddo.

Age 8: When your classmates ask questions, just remember they are being curious. You are allowed to share as much or as little about your leg as you want. Be kind no matter what.

Age 10: Keep dancing. Keep playing softball. Keep doing what you love.  Always remember that putting your whole heart into what you do is so much more important than how fast you can run or how well you can tap your feet!

Age 12: Phys. Ed is so overrated.

Age 13: Not everyone you meet will understand your story. Adults and children alike will be critical and small-minded. You’re allowed to cry it out. Don’t ever forget that your ability and determination is beautiful. These are the years that are making your skin a little thicker and your heart a little stronger!

Age 16:  Please don’t be so hard on yourself! You spend so much time wondering if your best is good enough. Spoiler alert: It is. Enjoy every minute of your time in the theater and doing what you love. Your happiness on the stage overpowers your limp in the best possible way.

Age 17:  In a few years, you will look back and understand how much this time of your life has shaped the person you are. Cerebral palsy is such an important part of your heart and soul and is nothing to be ashamed of. Your story will take you to some beautiful places and your dreams will come true. Stay strong. And please don’t forget how loved you are.

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Age 18: By now you can start to see how your body is affected by spasticity and aging. It’s new and it’s frustrating. One day at a time, Annie. And if that’s too much, take it one hour at a time. Or 10 minutes at a time. Be patient with your body and soul. You got this.
Age 20: So, you had an iced coffee at 9 p.m. so you could finish studying for that midterm… and now you can’t fall asleep. Hint: this may be a good time to stretch.
Age 21: Don’t fear the future. CP, career, life; it will all work out. 
 
Age 22 (and beyond): Wherever your life takes you, remember that little girl with the butterfly brace. The girl who ran hard on the softball field even when the rest of her team ran faster. Remember the self-conscious teenager who learned so much about herself on the high school stage. Remember being in your college dorm on the days when your leg hurt so much that you’d rather stay in bed but pushed through and kept studying. Do it all for her. Follow your dreams and make yourself proud.

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Why Acceptance Matters for People With Autism

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Autism is not just a disability; autism is something that requires understanding and empathy. Autism is a disability that affects a child’s social skills and learning skills as well. It can also make it difficult to comprehend (understand) words, situations, facial expressions or emotions. Autism can sometimes make it difficult to focus as well. People with autism learn differently than people without autism.

I want to share my story about my life with autism. I was diagnosed with PDD-NOS at 6 years old. PDD-NOS stands for pervasive developmental disorder  — not otherwise specified. I also have a touch of Asperger’s syndrome. I had no eye contact, poor language skills, many meltdowns and poor social skills. I was nonverbal at that time. I was overly sensitive to noises and many other things as well. I didn’t really understand why I had tutors in classes with me.

I still have tutors in classes with me because I learn differently, and I’m fine with that. Without tutors, I would be very confused and I wouldn’t be able to understand what’s going on. I was bullied, picked on, made fun of and lied to. I was pointed at and people stared at me. It made me feel like I would never fit in like everyone else. They tried to push me down, but those who care about me helped me get back up on my feet.

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I have met other people with disabilities, and they have shared their stories about their lives with me. And look at me now, I’ve worked extremely hard and I’m very independent. Whenever people try to bring me down, I automatically get back up. When a person points and stares at someone with autism, that’s called being rude and disrespectful, and it’s also judging them. I felt people were judging me because they didn’t understand. When a person with autism is being judged, it can bring bad reminders of their disabilities. For those of you who support people with autism and don’t judge them at all, keep continuing to help make Autism Awareness bigger and bigger. Keep treating them with respect to help them feel “normal.”

For those of you who have autism, you are beautiful fearless warriors. Nothing can stop you from succeeding. You are just as equal as everyone else. For those of you who don’t seem to understand autism, you can try to ask yourself, “How can I help people with autism?”  I ask you to understand people with autism and give them fairness, equality and respect. And I encourage you to stop judging people with autism; instead of judging, learn how to accept them.

Nothing will ever stop me from rising to the top. I believe we the people with autism will rise to the very top of success. At my school I once saw an assembly called “Yes, You Can.” I was touched by how well the speaker talked about his life. He never lets his disability stop him from succeeding. I am never going to give up — that is why I am writing this. I want to help and teach throughout the world. Finally, I would like you to remember, it doesn’t matter if you have autism or any other disabilities, or if you’re not disabled — fairness, equality and most of all acceptance is what matters.

Thank you for reading the words I wrote. I have finished writing my book. I am hoping I will be able to publish it very soon. Please keep a look out for it. God bless you all.

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I Won't Apologize for My Son Having Autism

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Parenting a child with a disability can create a good deal of anxiety in even the most self-assured person. You’re constantly questioning, “Am I doing enough to help him develop? Am I going to be able to get him all the therapy and equipment he needs? If something happens to me, who’s going to be able to take care of him?”

One could feel completely overwhelmed on an almost daily basis.

That said, you do get to a point where you get into a certain rhythm, a point where you’re actually able to develop a routine that helps you and your child make it through the day without too much added stress. Unless, or course, you add in the one thing that adds more stress and anxiety than any other:

Other people.

You can’t keep your child locked away. It isn’t practical and it’s also not good for the child. I stress more about taking my son out into public than just about anything else. It’s got nothing to do with being ashamed or embarrassed of my son. It’s got to do with how people might react to him, and how he might react to them. I’m not someone who believes the world revolves around me or my boy, autism or not. You adapt to the world, not the other way around. I believe I have zero sense of entitlement. Patience from others is always appreciated, but never assumed. The world just doesn’t work like that, and it doesn’t do me or him any good to pretend otherwise.

While I do everything I can to try to keep him calm when we’re out, there are times when things are out of my hands. When those times hit, I will apologize for any disruption he may have caused for others who just happened to be in the wrong place at the wrong time. There are many things I will apologize for.

There’s also plenty for which I will not.

 

I will not apologize for taking him out to public places. He has just as much right as anyone else to experience everything the world has to offer. I won’t apologize for exposing him to new people and places in an effort to teach him how he is supposed to behave when he’s out. I won’t apologize for taking the chance to introduce him to other children his age, so that he might learn what it means to make friends. I won’t apologize for holding onto the hope that this trip to the mall might go better than the last. I won’t apologize for the mere sight of him stimming while keeping to himself making someone uncomfortable. I won’t apologize for him coming out of his shell and actually reaching out to someone. Anyone he does reach out to should consider themselves lucky. I won’t apologize for what I do if someone decides not to accept an apology when something goes wrong, pushing the issue by frightening or mocking my son.

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To digress,  I will apologize to whomever is kind enough to post my bail afterwards.

Most of all, I won’t apologize for my son having autism. We all have challenges that we face. He and so many other children and adults like him face challenges far tougher than most can understand. So while I might apologize to the stranger who’s caught off-guard and doesn’t know his situation, I will never apologize for taking the opportunity to show the world how beautiful, loving, funny and wonderful my boy is.

That doesn’t call for an apology. That calls for thanks.

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