Illinois May Be the First State to Allow Medical Marijuana Use for Autism

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Illinois is well on its way to becoming the first state to allow autism as a qualifying condition for medical marijuana use.

On Wednesday, Oct. 7, the Illinois Medical Cannabis Advisory Board recommended eight conditions and diseases be added to the list of 39 that are already approved under the Illinois Compassionate Use of Medical Cannabis Pilot Program Act. Those conditions are chronic pain due to trauma, chronic pain syndrome, chronic post-operative pain, intractable pain, osteoarthritis, irritable bowel syndrome, post-traumatic stress disorder (PTSD) and autism. Two board members voted against recommending cannabis for people with irritable bowel syndrome or autism, according to the Chicago Tribune.

The director of the Illinois Department of Public Health (IDPH) must still approve the recommendations. If approved, Illinois would be the first state to allow medical marijuana use for autism, The Associated Press reported. To use cannabis, children must have signatures from two doctors in Illinois, and adults must have one.

“It would give clinicians and families another option to manage the symptoms of autism,” board chair Dr. Leslie Mendoza Temple told the AP.

The 39 conditions and diseases that have already been approved to qualify a patient to use medical marijuana in Illinois, with a doctor’s signature, include cancer, glaucoma, HIV, hepatitis C and multiple sclerosis.

Last month, the state health department rejected 11 new conditions recommended, including PTSD, with Governor Bruce Rauner’s office saying it was premature to expand the pilot program before the drug goes on the market in the coming months, according to the Chicago Tribune.

The state has reported that about 3,100 patients have already been approved to buy the drug under state law, and they will begin receiving their patient ID cards by the end of this month. People with the newly recommended conditions need to await approval before they can submit applications to participate in the program.

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What You Don’t Know About the Perspective of a Special Needs Dad

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I’ve always garnered strength (and the best info!) from a community of dedicated moms. Noticing a void amongst the fathers who must crave that same sense of community, I asked for a dad to submit his perspective of parenting a child with special needs. No one was more surprised than me when my own husband sent this.

Whether by choice, influence of society or just by the sheer fact that I am a handy fellow, I’m often posed with the question, “Can you fix it, Daddy?”

A simple question on the face of it. Glue this, bend that, reattach (insert random doll appendage here). But in reality, it’s a much deeper question for a dad. Being a dad is more than just fixing toys. It means being caring, tough, loving, stern, thoughtful, funny and strong all the time, and sometimes all at once. It means being a good role model in your thoughts and actions, a role model of how to love and treat your family and significant other. It means losing sleep and adding (or in my case losing) gray hairs when you realize you slipped up and didn’t have all the right answers. When you let your family feel pain or worry. When you failed to “fix it” whatever today’s “it” happened to be.

This is the daily struggle for a dad. How to keep his family happy, healthy and provided for. How to balance demands from work, home and family — again, all the time and sometimes all at once. You learn to be a master of multi-tasking, hoping you’ve remembered everything, only to realize you forgot to grab bread and milk on the way home. You internally curse yourself and vow to try harder tomorrow.

A dad’s work is never done. If you’re like me — a dad to a child with special needs — the pain and struggle are always front and center. You quietly burn inside watching your child experience relentless seizures. You feel you heart shatter when you watch their siblings cry and feel helpless. You feel like failure when you see sadness in your wife’s eyes. But these pains only strengthen your commitment to try harder, to stay strong, to love more. If we seem distant or quiet, we’re not. We’re thinking a thousand different things a thousand different ways. Ways to help, ways to love, ways to fix the troubles we face. When something needs fixing, we want to be the one you turn to.

To feel true joy as a dad, you learn it must come from your family. It comes from seeing your children discover new talents. The school play, a band concert, or even a homemade volcano. It comes from watching them set and achieve their own goals. Joy comes from watching your spouse’s hobbies and talents take off. The light in your child’s eyes when you glued their favorite figurine. A family day at the beach filled with laughter and fun is the fuel that dads run on. Every day you search for these moments. When you find them, you grab onto them fiercely. Because you know there are some days that are just plain awful. You need to tap these memories to keep yourself moving and maintain a positive outlook for yourself and family.

We often get caught up in making things perfect. In reality, when your child asks you to fix something, the expectation is only that you are there to help. To lend a hand, an ear to listen, a shoulder to cry on. It doesn’t need to be made whole or perfectly like new. They just want to know their problem is important to you and that you are there for them. Which of course, as a dad, you always will be. “Can you fix it Daddy?” I hope so, sweetheart. I hope so.

Follow this journey on Seizing Hope.

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When a Woman in a Nail Salon Became the Nurse Who Saved My Son

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On a Monday morning, after another night of experiencing contractions off and on again, I was ready for a pedicure to distract me from the pain that was coming, and because I probably wouldn’t be getting one anytime soon after the baby arrived. My mom and I arrived there at 11 a.m., and I picked out the best OPI color, Pink Flamenco. As my toes dried, I started to feel the contractions coming on stronger.

I paced the back of the salon and took some deep breaths. I noticed a woman getting a manicure who kept looking over at me and smiling. This is not unusual when you are pregnant. A pregnant belly is a magnet for older woman to smile and ask questions. After meeting eyes with this woman, I told her I couldn’t have my baby in the nail salon. She said, “Actually, you could. I am a labor and delivery nurse. Where are you delivering at?” I responded with the name of the hospital, and she said she had just finished her shift there. She told me if I had the baby that week (and she confirmed I looked close at that point), she would be there. She just had foot surgery and said she probably wouldn’t be my nurse, but she would definitely look for my name when she was working.

Now fast forward to Tuesday at noon after my son, Jack, was born. The morning was filled with a doctor’s visit and family visits, and the news of Jack having Down syndrome was settling in. We still didn’t have much information on his physical condition. Jack was still in the baby warmer in our room. I asked my husband, Chris, what his emotional state was at that point, and he said he was so unsure of what he was feeling, if our baby was going to be OK, if he was not going to make it — just a sense of confusion.

Diane, the nurse from the nail salon, saw my name on the list and came down to visit our new baby boy. She came in knowing Jack had Down syndrome and said, “You grieve the baby you thought, and you love the baby you were given. I came down to meet your beautiful baby.” At that moment, as we looked over him in the warmer, Jack started choking. He started gagging for air. Diane immediately asked who our nurse was, told Chris to push the nurse button, turned Jack downward and started firmly patting his back, then paged the NICU and said the word STAT. She told us to pull the cord, and her firm pats turned into forceful blows. 

Flashes of my first-aid training came flooding through. If you have ever been trained in it and then see it done, it can be frightening. Jack was turning blue and a hue of purple. We stood there in silence as three people from the NICU ran into our room and tried to get Jack to breathe.

He was taken to the NICU for monitoring and for some tests. They brought both Chris and I back to sit with him. I was emotionally numb and felt like I was going to throw up. I remember sitting in the rocking chair and thinking to myself, I don’t want to be here. I can’t do this. I said to Chris, “I just need to go lie down. Are you OK if I go back to the room?” Again, Chris stayed with our baby and watched as they stuck tubes down his throat and did numerous tests on him. When he came back, I could see it in his body he was broken. Tears streamed down his face.

After a couple hours in the NICU, the neonatologist came and talked to us about Jack’s abdominal scan. It was confirmed that everything was perfect, that he was choking on fluid from being in the womb and could not breathe. His echocardiogram came back normal, like a typical newborn. Some children with Down syndrome are born with congenital heart defects.  Jack was a healthy newborn with an extra chromosome.

Diane was not our nurse. Diane was just coming to say hello. Diane met me the day before because she saw I was in labor. I talked to her for 10 minutes, and now she saved my baby’s life. This was not by chance; I believe she was an angel. How I am thankful my parents taught us to be personable, acknowledge others, make a new friend and realize God can speak to you through others even when you aren’t expecting it. I believe God taught me something really big that day never to underestimate when and where God can show up… and that I need to get more pedicures!

So who are you going to acknowledge today that you might not have taken the time to before?

Follow this journey on Jack’s Basket.

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A Letter to Myself Before My Bipolar Diagnosis

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Hey Sarah, it’s me! I mean, it’s you. The older, wiser you from 14 years in your future. I have a few things to share with you, things you really need to know. I’m not trying to change your destiny, just trying to make the next 14 years a smoother, safer ride.

It’s September of 2001. You’re 23 years old. You just graduated from college, bought your first car and are working at your first job. You’re not a fan of your new job, but don’t worry. A better job is not far away. You’re in love, but the relationship is kind of rocky. I wish I had better news, but he’s not “the one” for you. The road you’re on leads to disappointment, depression and heartache. Get off it as soon as you can — the longer you wait, the harder it’ll be.

The real reason I’m writing is to discuss your depression. I know exactly how much it sucks. And unless you make some changes, you’re going to experience it over and over again for the next 14 years. It will be overwhelming and at times you’ll be a danger to yourself. But I’m here to tell you that you will survive — it gets better. Even when you’re at your lowest, you have friends and family who care about you. Reach out to them and let them help you. No matter what, know your life is worth living. I’m counting on you to not give up.

And I’m so proud of you. After 11 years of suffering in silence, tomorrow is your first appointment with a psychiatrist. Your new doctor is going to diagnose you with major depression and put you on a selective serotonin reuptake inhibitor (SSRI). That would be an excellent choice…if you actually had major depression.

Let me save you years of misdiagnosis and mistreatment.

You don’t have unipolar depression. You have bipolar depression. The depressive symptoms are the same, so it’s hard to distinguish between the two. And you haven’t yet experienced mania. But trust me, it’s right around the corner.

Like many people with bipolar, traditional SSRI antidepressants can trigger manic episodes. And as soon as you start taking that drug, mania will rear its lovely head. Your manic episodes are periods of euphoria, recklessness and impulsivity. You’re incredibly creative and productive during these periods even though you don’t sleep. Your mania looks different from the typical mania because to most it appears like you’re in a really good mood. Out of habit you hide the reckless and impulsive decisions you make. Unfortunately, this is going to make proper diagnosis much more challenging.

Mania makes you feel immune to consequences, and to be honest, you’re going to do some pretty stupid things while you’re manic. All your choices are going to seem like a good idea at the time. Trust me, they weren’t.

I know you won’t believe this right away. You’re probably in denial.

So far your only personal experience with bipolar is your sister’s high school friend. She was fun to be with when she was manic, but dangerous when she was depressed. That’s not you; your bipolar is different. Everyone’s is a little different, and it’s nothing to be afraid of. You’ll probably have to figure it out the hard way.

Be open to an alternative diagnosis when it happens. When you finally accept you have bipolar disorder, see your doctor and start on the path towards stability. If you do these things, your next 14 years will be a joy. If you don’t, I’m pretty confident you’ll end up right where I am, this time writing a sharper, more strongly worded letter to your younger self.

Wishing you a happier and healthier future.

Follow this journey on Bipolar Bytes.

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A Nurse’s Simple Act That Gave Me the Strength to Care for My Husband

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There are moments in your life that are seared in your mind. Even though some of the finer details may fade with time, your heart is permanently branded with the memory. This is the story of one of those encounters.

In early 2003, my husband, Matt, underwent a stem cell transplant to eradicate the mutant white blood cells coursing through his veins, aka leukemia. For those who are blissfully unaware of the process, let me provide you with a brief timeline of our experience:

What you don’t know will hurt you: The presentation of the 150-plus-page quick reference guide describing the ins and outs of a transplant.

Getting to know you: There’s test after test to prepare the candidate for the procedure, including, but by no means limited to, multiple scans, blood work, full-body measurements and psychological evaluations.

End of the world as you know it: A combination of total body irradiation and chemotherapy to exterminate the diseased bone marrow. The patient’s native immune system is severely weakened.

Knowing what’s good for you: Harvesting and transplanting of the donor’s stem cells. In Matt’s case, his sister was the gracious benefactor.

Don’t know what hit you: While waiting for the donor cells to graft into the recipient’s immune system, the patient is extremely vulnerable to life-threatening infections. He or she is moved to an isolation room for protection. My story takes place during this precarious time.

Not knowing whether to laugh or cry: Matt was given a 60 percent chance of not making it through the ordeal. It took eight weeks to see if he would overcome the odds.

During Matt’s entire hospital stay, he was never left alone. I would arrive each morning by 6:30 to catch his doctor on his early rounds. One or both of his parents would come each evening to relieve me and spend the night. The nurses at his facility were some of the best in their field, but with an entire ward of critical patients, they were stretched thin. Our devoted trio strove to pick up some of the slack. There was always someone there to hold Matt’s hand, fetch the vomit bucket or help him to the bathroom.

The days in isolation were some of the darkest. The patient can feel like they’re dying. All traces of their original bone marrow have been annihilated. This grueling prep must be completed in order for the donor stem cells to seize control. It’s the medical equivalent of a hostile takeover.

Waiting for the new cells to take root and multiply is like trying to make an industrial vat boil using only a birthday candle. Slow and tedious, you are constantly worried the candle might burn itself out before the water even reaches a simmer.

I would usually grab a light lunch to eat back in Matt’s room. Outside food, however, was not allowed in the isolation wards. Stubbornly glued to Matt’s bedside during this perilous phase, I skipped nearly every meal. When this absence of nourishment was combined with my lack of sleep and constant worry, I was in danger of needing my own hospital bed.

Whenever you spend any length of time in a medical facility, it doesn’t take long to know most of the nursing staff on a first-name basis. Most of them will take care of your loved one up to a week at a stretch. There are a few, however, that only appear for a day or two. These fleeting engagements can prevent you from ever learning the names of these particular providers of mercy. Such is the case of the nurse with kind eyes.

She came in one morning, introduced herself (again, can’t recall her name) and tended to Matt. She popped back in each hour just like every other nurse had been doing for the past week. After about five hours, she asked if I was going to lunch. “No,” I replied, “I’m afraid to leave.” The nurse looked a little concerned, but nodded as she left. I had been asked that question many times and thought nothing of it.

An hour or so later, she returned with a small paperback book in her hands. “Go eat. You need your strength,” she instructed. “I’m taking my lunch in here. He won’t be alone.”

She was of Asian descent and her gaze was sympathetic. Beyond that, I’m unable to recall her appearance. Nevertheless, I will never forget the effect she had upon me. My mind had been hissing with incessant anxiety. In the short amount of time it took to reach the cafeteria, I was able to settle my fears down to a steady purr. The kind-eyed nurse took on my “burden” for less than an hour, just long enough for me to rejuvenate my stamina for the weeks and months ahead. Her act of compassion still resonates more than a decade later.

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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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A Parent’s Guide to Mental Illness in the Family

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A mental illness diagnosis can be confusing, devastating, relieving and even a combination of all three. If your child has just been diagnosed with a mental illness, you might be wondering, what next? 

The Mighty asked a few parents who have children with mental illness to offer insight into their journeys so far. Whether you’re new to the game or just need a reminder, this advice might help you take those next steps after a diagnosis. Or at the very least remind you you’re not alone.

Here are some things to consider when your child has been diagnosed with a mental illness, from parents who’ve been there:

1. Take a breath.

A diagnosis can be both an end and a beginning. It’s the end of unknowns but the beginning of learning how to manage. Your child’s seemingly strange behavior, secrecy, sudden mood change — whatever made you realize something was up — has a name. Although a new part of your journey has just begun, it has a direction.

What parents said:

mhparent1 “When we finally received the official diagnosis of bipolar disorder my husband and I actually felt a sense of relief. It meant we could use this information to help our daughter get more help at school.” — Cate Luther

“When she was finally diagnosed with schizoaffective disorder you would have thought I would be devastated. Instead, I was relieved and validated. Naming it was helpful to me. It was no longer a ‘what if’ or a ‘it might be.’ It allowed us to move forward.” — Erin Loraine

“This disability doesn’t define who this wonderful young man is. The diagnosis however, finally gave me a breath of fresh air. Now he might be able to finally get the help he so much deserved.” — Lisa Selim

2. Don’t be afraid to ask questions.

It’s unlikely you’re formally trained in psychology and psychiatry. That’s OK. Make it your mission to learn as much as you can about your child’s diagnosis. This knowledge will be ammunition as you move forward, paving the best possible road for you child. If there’s something you don’t understand, ask. Google. Mental illnesses can be complicated, so learn as much as you can.

What parents said:

mhparentss2 “At first you might not even know what questions to ask. That’s OK. The more you know about your child’s condition, the more prepared you’ll be to help them every step of the way.” — Cate Luther

“Understanding my daughter’s mental illness was vital to us advocating for her. I wanted to not only understand the medical aspect of her illness, but I also wanted to know what people with schizoaffective disorder lived like. I read every book and memoir in my library about mental illness. It was so important for me to be educated, not only when dealing with professionals but also when dealing with family and friends. I had to educate myself to break through my own stigma before I could help other people understand her.” -Erin Loraine

“It was very important for me to learn the ins and outs of what my child has and continues to go through. It helped me understand how to help him and advocate for what he wants and needs.” — Lisa Selim

3. Help your child learn about their condition. 

While it can be scary to witness someone dealing with a mental illness, put yourself in your child’s shoes. Depending on how old they are, it could be hard for them to comprehend what’s happening. But no matter what age, the more they understand the more they’ll be able to communicate what’s going on in their heads. 

What parents said:

mhparents3 “We’ve explained [to our daughter] how each medication she takes helps her. Now she also knows their names. We didn’t want her to question why she was taking medication. The more that she knows about her challenges, the more that she can self-advocate.” — Cate Luther

“My daughter is 10 and also has an intellectual disability, so we help her understand her illness at her level. The number one reason we want her to understand her illness is that we want her to be able to advocate for herself. She knows she takes medicine to help her brain and can even tell you what she takes.” — Erin Loraine

“Informing my son about his disability has been important because I knew one day he would turn 18 and I would no longer play such a vital role in his life. I had to help him understand how his disability affects him, that he has a voice in his care and that he’s capable of doing anything he wants despite of it.  — Lisa Selim

4. Get ready to learn a new language.

For some, a mental illness diagnosis is a one-way ticket into the mental health system. Welcome! Care is disjointed, there aren’t enough mental-health providers and insurance coverage still has holes. To thrive here, it’ll be helpful to learn how to talk the talk. Just like you need to know the ins and outs of your child’s diagnosis, understanding the system that will provide him or her treatment will be just as beneficial.

What parents said:

mhparents4 “I’ve learned ‘dx’ equals diagnosis, ‘tdoc’ means therapist/counselor ‘pdoc’ is psychiatrist, ‘FBA’ stands for Functional Behavior Assessment… and the list goes on. It’s a whole new alphabet soup. The more you use the terms, the more you’ll learn them.” — Cate Luther

“The reality is that to work through our incredibly challenging mental health system we have to practically get our honorary PHD in psychiatry! Get connected with a chapter of the National Alliance on Mental Health (NAMI) in your area, meet other parents and read, read, read!” — Erin Loraine

“It’s important to attend any trainings, go to support groups and research any language professionals throw at you. The more involved you get in the complex systems that serve your children, the more information you’ll gain. The mental health system is complex and ever-changing.” — Lisa Selim

5. Connect with other parents.

Raising a child with a mental illness may seem isolating, but it doesn’t have to be. Connect with parents and use each other as resources — share the triumphs, the missteps, and give each other support. There’s a community out there, you just have to find it.

mhparents5 What parents said:  

“When we suspected that my daughter had a mood disorder, I joined The Balanced Mind Parent Network. It’s an online support group. When no one else understood what we were going through, this group got it. I’m still a member today, only I’m the one offering support to other parents.”  — Cate Luther

“No one understands like other parents. No one. I found my support through online support groups and through NAMI. I’ve made some great friends through this journey. I wouldn’t have made it this far without knowing some of those brave parents who’ve shared my joy and pain with me and understood every single bit of it.” — Erin Loraine

“Other families who’ve been though similar situations can provide empathy, not sympathy. Not once in this journey have I wanted sympathy. I’m glad I had support and people who would offer constructive advice and sometimes even criticism. This meant a lot since so often we’re shut in our house.” — Lisa Selim

6. Be prepared to advocate for your child.

In the journey to get your son or daughter treatment, there are times you’ll have to fight to get your child the care he or she deserves.

What parents said:

mhparents6 “We’ve had to fight for every single thing we’ve gotten for our daughter, even with an amazing team of professionals on our side. Some of the things we’ve been through are exhausting emotionally and physically. Getting help for your child is a uphill battle. You have to stay strong, take care of yourself and be ready to move mountains. If you don’t stand up nothing will ever change for your child or for anyone else.” — Erin Loraine

“My pastor gave me the best advice. He said, ‘He is your son and no one knows him or loves him like you do. In the system he is just a number. That is why you must speak up.’ And then don’t feel guilty for doing so!” — Deborah Geesling

“So often I’ve had to put the tears away until after a meeting and advocate for my son’s needs. It’s about what’s best for him. He is human and is worth every bit of time and energy. He will never stop learning and growing; therefore, it’s important to make sure all his needs are met until he’s capable of doing it on his own.” — Lisa Selim

7. Accept the changes.

There might not be such a clear cut “before” and “after,” but like with any diagnosis, there will be changes. Changes in family dynamic, changes in your expectations and changes in your child’s path. Embrace your children for who they are now, and get them the care they need so you can all move forward.

What parents said: 

mhparents7 “Your life may look different than the life you imagined, but you will make it through. Our family therapist helped my husband and I go through a grieving process. It helped us immensely.” — Cate Luther

“My child is literally a different person than she was before her illness. It’s absolutely heartbreaking. We’ve had to learn our daughter is not her illness. She is our child who happens to have a mental illness. Separating the two was very helpful.”  — Erin Loraine

“I had to finally accept I don’t care what my son does, as long as he has good morals and values. Once I stopped blaming mysef and made time to take care of me, it was much easier to understand that nothing can change him, and I wouldn’t want it any other way. He has actually taught me more than I will ever teach him.” — Lisa Selim

And lastly…

8. Don’t forget to take care of yourself. 

If your child has diagnosed with a mental illness, here are more resources that might help:

-Take NAMI’s Family-to-Family class, a free, 12-session educational program for family, significant others and friends of people living with mental illness.

-Connect with other families on NAMI’s Facebook page.

-Join the Depression and Bipolar Support Alliance‘s The Balanced Mind Parent Network.

-Find a support group through Mental Health America.

-Take time to do something that makes you happy at least once a week. Yes, you’re caring for someone else, but you have needs too.

Everyone’s experience with mental illness is different. These tips are meant to offer insight but cannot replace talking to a medical professional about what’s right for you and your family. 

*Quotes have been edited for length and clarity.

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