Aicardi Syndrome

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    Community Voices

    I’m new here!

    Hi, my name is GrandmaLoves. I'm here because
    my first grand baby has been diagnosed with Aicardi Syndrome.
    #MightyTogether

    1 person is talking about this
    Michele Rosner

    Gift Guide for Teens With Intellectual and Developmental Disabilities

    When your child’s development does not match what is typical for their chronological age, it can be challenging to find age-appropriate gifts that they will truly enjoy. That’s especially true for tweens and teens with significant disabilities. My daughter Julia is 18, non-mobile and non-verbal. Developmentally, infant and toddler toys are most appropriate for her. But, she’s a teenager and her patience for musical, light-up toys is running out. Over the years, I’ve frequently shed tears of frustration in the pursuit of just the right gift for Julia. It’s important to me to find a gift that reflects my love for her and makes her happier. All of that pressure to find just the right thing caused unnecessary anxiety and sucked the joy out of the gift-buying experience. I want gift buying to be something I look forward to doing rather than being frustrated or overwhelmed. To add some happiness and excitement back into gift shopping, I’ve learned to look beyond toys and games to find gifts that are both age and developmentally appropriate. The best gift ideas for my teen can typically be found in one of these areas: Experiences – With quarantines and shut-downs, we’ve found it challenging to make sure our daughter can have safe experiences outside of our home. But, with a little creativity, we’ve found some ideas that are safe, fun, and often inexpensive as well. Here are some ideas to consider: Zoo pass or membership Drive-in movies Drive-thru Christmas light displays State park pass for trail hiking and walks Botanical gardens Room décor – What young adult doesn’t want a bedroom that reflects their personality? You can do a complete makeover that includes painting walls, setting up new organization systems, and outfitting the bed with a new comforter and sheets or a smaller scale project, such as adding a new string of lights, throw pillows or a beanbag chair. Whether it’s a total transformation or a smaller project, tweens and teens usually appreciate an update that makes their space feel more comfy and cozy. Personal care – Think about those little splurges that make day-to-day life a little brighter. Some ideas include: scented lotions, fuzzy socks, hair products, lip balm, massage pillows, weighted blankets, bath bombs and essential oils. Subscriptions – My daughter enjoys music and movies, so subscriptions to music and TV services are gifts that she can enjoy all year round. Also growing in popularity are subscriptions to themed boxes, which can be a wonderful monthly surprise. Check out subscription boxes for items such as books, sensory kits, craft projects, and more. To help find some tried and true gift ideas, I’ve created a gift guide with ideas that have been hits with my daughter. Check it out for links to unique gifts that could be a new favorite for your tween or teen. Another gift-buying strategy that works for me is to keep my eyes and mind open to new ideas all year long, and then make sure it’s easy to save gift ideas as I see them. I’ve created a Pinterest board and an Amazon wish list to track possible gift purchases. When I see a great idea in a Facebook post or during a discussion with a therapist, I just pin it on the board or add it to the wish list so it’s easy to find when I’m ready to shop. Finding just the right gift for someone I love fills me with a sense of satisfaction. With a few simple strategies, I’ve reclaimed the joy in holiday shopping for my daughter with developmental disabilities. By sharing these ideas and the gift guide, I hope others can put a little extra magic into their holiday season. Find more great ideas at The Mighty’s Gift Guides for People With Disabilities.

    Michele Rosner

    Staying Positive During Tough Times Raising a Child With a Disability

    When my kids were younger, I was that momma — the one the neighbors talked about. On warm, rainy days, you could find me and my kids outside playing in the rain. Many of our neighbors are senior citizens, and they found our rain dances entertaining. For my kids, it was pure joy. For me, it was a reminder that you don’t always need sunny skies to find happiness. I love this quote from Vivian Greene: “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Dancing in the rain is something our family does both literally and figuratively. When you’re parenting a child who has disabilities, storms can roll into your life frequently. Our daughter’s developmental delays and medical complexities have created all kinds of storms for us. There’s been the tornado of whirling stress that comes with an unexpected illness and hospitalization. We’ve faced long monsoon seasons of trying to navigate tense IEPs, struggling to get my daughter the therapy services she needs. Dealing with insurance can feel like trying to drive through a blizzard, where the visibility is low, frustration is high and the paperwork piles up like a foot of heavy, wet snow you must plow through. I’ve learned that if I always wait for the storm to clear before I look for joy, I miss out on too many opportunities for happiness. I don’t want to limit myself to only being happy when conditions are just right. My choice to dance in the rain impacts our entire family. My daughter faces enough medical challenges; she doesn’t need my anxiety and frustration about the storms around her to add to her load. And I don’t want my kids who don’t have any disabilities to grow up in a home where everything revolves around the challenges their sister is facing or the stress I am feeling as a parent. So, we’ve all learned to grab joy whenever and wherever we find it. It has taken me a long time and a lot of practice to let go of my anxiety so I can be in the moment. Even when my medically complex daughter is healthy, I have to make a conscious decision to stop being hypervigilant. And when she’s ill, it takes even more mindfulness to remain optimistic and open to joy. An even bigger challenge is that sometimes I have to squelch the idea that it’s wrong for me to seek happiness when my daughter is struggling. A focus on choosing joy, even when we’re in the middle of a storm, shouldn’t cause feelings of guilt. My kids deserve a mom who is committed to navigating the storm and finding chances to dance rather than a mom who is always completely overwhelmed by the conditions. It might take a lot of mental reminders, but no matter how big the storm is, learning to dance in the rain benefits me, my daughter and the rest of our family.

    Michele Rosner

    Toy Shopping for Children With Developmental Delays

    By the time my daughter was 2 years old, buying toys for her could be described as bittersweet on a good day and tear-inducing on bad days. She had reached the chronological age where a typical child would be playing with her tricycle, play kitchen and building sets. Yet developmentally she was non-mobile, nonverbal and unable to play with toys meant for kids her age. When holidays and her birthday rolled around, I found myself brushing aside my tears and gathering enough mental energy to look for just the right gift. Buying gifts for a child you love should bring happiness, not tears. But when you have a child with multiple disabilities and significant developmental delays, harsh realities can suck the joy out of something that should be fun. For me, toy shopping was a very visible reminder of my daughter’s limitations. I used to think that buying gifts for my daughter would get harder and harder as the gap between her chronological age and developmental age got bigger and bigger. But that hasn’t happened. By changing my perspective, I’ve found ways to make gift-buying a happy experience instead of something that makes me sad. Focus on what she loves — From the time she was a baby, my daughter has loved lights and music. After about three years, we learned there are only so many light-up, musical toys you can buy for a toddler or preschooler before you all reach the end of your tolerance for loud, tinny music and bright, blinking lights. Instead, I learned to be more creative. As a little girl, her love of lights and music could be nurtured with more age-appropriate toys that were switch-adapted. Now, a subscription to Spotify and a Bluetooth speaker are the perfect gifts for my music-loving teen. Make it fun to play together — My daughter’s challenges make it difficult for her to play independently. So we’ve focused on toys and activities that are fun to do with others. Maybe my daughter couldn’t build a tower of blocks by herself, but she loved knocking down the tower built by a sibling. While she can’t hold playing cards or roll the dice by herself, she loves partnering with a sibling, parent or friend to play games. Some of our favorite memories are from the days we all grabbed a musical instrument and played in the family band, with my daughter shaking an adapted instrument she could hold on her own. Get ideas from others – Some of my daughter’s favorite gifts have been suggestions from other parents of kids with disabilities. There are even Facebook groups dedicated to sharing ideas for children with specific disabilities. Even when I’m not actively shopping for my daughter, I use technology to keep track of ideas that might be a good fit for her in the future. Having a Pinterest board and an Amazon wishlist filled with ideas makes shopping less stressful and more fun when it is time to buy gifts. In many ways, finding more joy shopping for my daughter has been a result of accepting her diagnosis and learning to adjust to her limitations. These days, I’m excited to give my daughter gifts that are just right for her, and the tears are no longer part of the experience. Instead of worrying about what toys she “should” be playing with based on her age, I simply shop for things that will make her happy. I’ve also tapped into my own inner child, finding joy in playing with my daughter even when we’re playing with toys designed for a toddler. Having gone through this experience, I created a toy guide for parents of children with developmental disabilities. Over the years, we’ve had some toys that have become family favorites, and I hope you can get some ideas that will add more joy to your gift-buying experiences. Looking for great toys for kids with disabilities? Try our Mighty gift guides: 16 Interactive Toys for Nonverbal Kids 31 Awesome Gifts for Kids With Sensory Issues Cool Gifts for Kids Who Don’t Like to Play With Toys 17 Educational Gifts for Kids With Disabilities 16 Books, Games and Toys for Kids That Feature People With Disabilities 12 Items You Can Use to Create a Sensory Room How to Support Kids With Sensory Needs 9 Developmental Toys for Children With Disabilities

    Community Voices

    Acknowledging the Emotions of Parenting a Child With Disabilities

    The journey of the family of someone with disabilities can be a bittersweet one. The grief cycle keeps spinning and sadness can hit out of left field, but so can joy, even at the simplest things. Through personal experience, I have learned that moments of sorrow can be balanced with times of happiness Caring for someone who has no ability to speak or communicate with words can be disheartening. When someone is unable to speak or use a communication device, it can be frustrating for both the caregiver and individual without communication skills. Looking for cues in demeanor, reading sounds such as crying or moaning and facial expression are ways to narrow the possibilities of needs unable to be expressed in a way others can understand. Happiness, of course, is easy for the caregiver to see. Seeing a smile or hearing laughter can erase the sorrow and frustration of not understanding what is wrong at other times. Major life events, such as a graduation and milestone birthdays can bring a sad feeling for the lifelong caregiver. They might feel sad for the childhood not lived in a typical manner by the graduate. They might feel like they and their child missed out on the fun of getting a driver’s license, visiting colleges and agonizing over broken hearts. It is important for them to remind themselves that if childhood was filled with other “typical” experiences such as participating in Scouts, school performances, meeting goals and social activities, then graduation is a joyous culmination of those. Lifelong caregivers might feel sorrowful when post-graduation does not look the same as it does for peers or siblings of the now adult child. Instead of college or a job and moving out on their own, they may be attending adult day care and living at home or in a group home. Even when the program and staff are wonderful, there can be feelings of grief because the dreams a parent had for their child when they were born are not being realized. However, even if the details of life are quite different from those dreams, if their adult child is happy, welcomed by peers, has a variety of social opportunities such as attending parties, family celebrations and outings with friends, being are safe and content — they are having a good life. If a parent can focus on those positives they can feel more joy than sorrow. In spite of the bitter-sweetness of the journey of a family impacted by disability, I believe it can be overall a joyful one. Learning to focus on the good, while acknowledging the struggles and occasional sadness, makes for a wonderful life.

    Why Networking With Other Parents of Kids With Aicardi Syndrome Helps

    Through the more than 25 years with my daughter, who is diagnosed with Aicardi syndrome, I have learned that one of the best things I could do to help her is network with other parents who deal with similar issues. In the early years, finding other parents was a slower process; not everyone had access to the internet and there weren’t social media platforms, yet. I found other parents by writing into a magazine that helped connect parents. It’s much easier now as entering a keyword and a click is likely to bring parents together in an instant. Still, it can be challenging to find others in your community. These are some of the reasons networking has proven to be important. 1. In the early years of her life, I had no idea what to expect my daughter to be like and I had many questions doctors couldn’t answer. Would she reach any milestones? Would other children accept her? Were there things I should be looking for in reference to her health? Parent support groups became very important. I found that guidance through the early years came from other parents who had children of varying ages with similar challenges. Anything I asked them was answered with their life experience, and if they didn’t know, they knew another parent who might. In the early years they were an invaluable resource. 2. As my daughter aged and went through the school system, contact with other parents became more difficult; there weren’t parent support groups. Meeting other parents became hit or miss. Schools didn’t make it a priority to help parents meet each other. There weren’t always extra-curricular activities for my daughter to participate in with similarly abled peers, and the parents of more typically abled children couldn’t always help or understand my issues and needs. There were activities on weekends usually with other similarly abled kids in our county, but not always ones that interested or were a good fit for my daughter. Still, when we found other families at these activities there was much information exchanged, emotional support and an understanding of issues faced which can only be understood by someone who is living the same reality. 3. As we went through her late teens and into early adulthood, contact with other parents remained the single best source of information about the processes of obtaining guardianship, transitioning from high school into adult programs or work, finding adult medical professionals, and recreation opportunities. Exchanging information about services and other opportunities open to adults with developmental delay is even more important as we age. Talking to other families dealing with similar issues, and supporting each other is invaluable in avoiding feelings of being alone as we watch our “empty nest” friends going on vacations and spontaneously meeting friends for dinner while we still need to find appropriate care for our adult child before we can commit to invitations. To have connections with others in a similar situation helps when we feel left behind from our peers. 4. As we look to the future for ourselves, our family and our child, it is other parents who have either done it, or are doing it, that help us gather information. Other parents can help us know what questions to ask in residential planning, job or day program possibilities, and financial planning for our loved one. Discussing fears, feelings, and the logistics of our child’s future as we age is more comfortable with those who have the same type of concerns. It enables us to gain some perspective, and think more clearly about what to do, and prepares us to deal with the professionals who will be assisting us. Through all the stages of our child’s life, networking with other families has been an important part of getting through the tough times, celebrating achievements, and preparing for the future. It has also been a great way to make friends for life for us and our child. When we feel less isolated we can be more effective advocates for our loved one, and happier over all.

    Aicardi Syndrome: Showing Support After My Child Was Diagnosed

    Twenty-three years ago, my daughter was diagnosed with Aicardi syndrome. As I tried to process all the information and implications, I also tried to help family and friends understand how to help us cope. I appreciated theirefforts and advice offered in good faith, yet none of it helped much. We did our best to navigate uncharted territory while still attempting to retain our lives as we were accustomed to. In retrospect, these are the five ways I wish people could have supported me after my daughter was diagnosed: 1. Help with the housework until I got my feet back under me. Laundry, vacuuming, dusting, floor mopping and caring for a house is very low on the priority list. At the same time, seeing these things left undone is a great source of stress. Taking care of an infant with medical issues, a healthy 3-year-old and a spouse are about all I can handle. When the basic housework is left undone, I feel completely inadequate. I’m learning words and procedures I don’t yet understand while trying to keep my family going. If you would just take over one task for one day, such as laundry, it would help a lot. Dropping off a meal that just needs reheating and some paper plates would keep us healthy and make the end of the day that much easier. 2. Listen to me. When I voice my fears about the development of my baby, please don’t act as if I’m overreacting. I’m the one who has been talking to the doctors and doing research. When you tell me to “stop borrowing trouble,” it invalidates my feelings. It makes me feel more alone. Please listen to me, hand me tissues, entertain my other child or make me a cup of tea, then remind me that only time will tell how well my child develops. Reassure me we will learn to cope with whatever comes along. If I hold in all the inevitable negative thoughts, I won’t be able to find the positives. It would be a shame if I missed any of the good things because I was so focused on the negative ones. 3. Encourage me to step away for a few moments. Learn how to care for my child and help me see that even just stepping outside by myself for 5 minutes will refresh me. I will be against this, but if nobody gets me to see that caring for myself is just as important as caring for my baby, I will burn out. Help me understand that even sitting with a cup of coffee for 10 minutes while someone else takes over will benefit us all. I need to learn that my way isn’t the only way and that my baby needs a break from me as well. We all need contact from more than one person in our lives. Eventually, I may be able to leave her in someone else’s care for an hour or two at a time. This will allow me to feel like myself instead of a nurse/therapist/teacher/doctor/researcher all wrapped up in one. I need to remember who I am in order to be the best person in whatever role is required of me at any given moment. 4. Please don’t give me the “You’re never given more than you can handle” or “She has the right mother” speech. Really, I’m not that special. Every day people are taking care of their kids no matter what is required, and I am no different. My kid’s needs are just not as mainstream as most. It doesn’t make me super or strong. It just makes me a decent parent. 5. Be honest with me. If you feel uncomfortable around us, please try to figure out why. Maybe we can talk about it. Don’t just stop calling and coming around without explanation. I already feel like the odd one out, and when you drop out of my life, you are taking away the support I need while I’m trying to make sense of everything. This diagnosis changes the rhythm of our lives even more than simply having another child does, and we will all need to constantly adjust to new circumstances. Imagine doing that while mourning the loss of someone’s presence in your life as well. I’m sorry if I don’t seem like much of a friend right now, but if I didn’t feel comfortable enough with you being cranky or crying, we wouldn’t be that close. Leave if you must, but please tell me you’re taking a break. If you can’t do it in person, at least send me a note so I’m not left wondering what I did wrong. Helping any caregiver to cope may be one of the most important ways to support them. Don’t underestimate how much doing even one little thing for them will help. Caregivers need to know someone cares about them. If you ask them what they need and they don’t know, then look around. Chances are, you’ll be inspired to do something for them they didn’t even realize they wished someone else would do. The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines. Lead photo source: Thinkstock Images

    Mom Responds to Email Judging Her for Using Medical Marijuana

    You wrote me an anonymous email. You said that my views on medical marijuana are “disturbing and disgusting.” You also added some other things about how God will judge me soon, but that “disturbing and disgusting” part… that hurt the most. I just wanted to say thank you. It took me a lot of time to sort this out. Because your words deeply wounded me. But in that quest for the healing of my heart, I realized I can thank you. And that has brought healing in itself. Thank you for cementing my resolve that I would do anything to help my daughter. I give her medical marijuana through her feeding tube three times a day. It is a strain that is high in Cannabidiol (CBD) and low in THC so she does not experience the high usually associated with the drug. Since we started it a year and a half ago, her seizures have been reduced by 75 percent. This is after seven years of watching her seize every day. After trying 10 different anti-epileptic drugs without great success. Imagine lots of tears and sleepless nights mixed in. Do I have one regret about medical marijuana? Not one. Would I run through a glass door if they said that would stop her seizures? Absolutely. Thinking about what could possibly be “ disturbing or disgusting” about finding a treatment that finally works has solidified my determination that I will do whatever it takes. No matter the cost, no matter the ridicule, I will do my best for my child. Aicardi syndrome has already taken too much from her. She deserves to have parents who will do whatever they can to give her the best life possible. Thank you for teaching me to stop the never-ending judgment reel in my mind. Each one of us has a constant line of judgments running in our minds. Well, I assume you do too. She shouldn’t be wearing that. How can they afford that car? She is rude. He is driving too slow. Their kids are out of control. That guy talks too much. It is always running… unless we consciously stop it. We have to renew our own minds. Our minds will go there on autopilot unless we decide not to let them. Because I was so mad at you for assuming you know what we have been through, I realized I too have no way to know the road each of these people has trudged to get this point, on this day, where I am judging them. I will renew my mind when that judgment reel starts playing and will choose to focus on the things in my own life that need refining before determining things that need to change in others, especially when I do not know the full story. Which is probably most of the time. Thank you for reminding me to be careful with my words. Words have power. They can either breathe life into another. Or they can suck it out. F ew neutral words exist. I had several days taken from me because of your anonymous words. You probably have not thought of me again. Words have power. I want to use them carefully. Thank you for teaching me the importance of saying “me too” as often as I can. When I read your email, my first ache came from feeling alone. You may not know this. Parenting a rare child can be lonely and isolating. In this case, all I could hear was… yep, you are the only one dealing with this. And everyone thinks you are disturbing and disgusting. She is just the only one willing to say it. Have you been there? I really needed to hear someone say, as author Brene Brown says, “the two most powerful words when we are in struggle, ‘me too.’” Showing up, coming alongside and just saying “me too” can heal lots of wounds. So to you, the author of the email, I say thanks. Thank you for making me stronger. Thank you for making me kinder, I hope. Thank you for making me gentler, I pray. Thank you for making more aware of the need for “me too.” You probably thought I’d fire back. But the beauty of raising a medically fragile child is… you get strong and with that, you learn to endure pain and keep moving forward. Onward, with more grace and love, hopefully for us all. Follow this journey on God’s Alive! The Mighty is asking the following: Write a thank-you letter to someone you never expected you’d thank. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    What a Fellow Special Needs Mom Said About Kids Like My Daughter

    Encountering negativity is inevitable, but I feel the chances go up significantly when you have a family member with special needs. I instinctively knew this after my daughter was diagnosed with Aicardi syndrome and we began our new path in the world of disability. I knew we’d encounter uninformed, misinformed and thoughtless strangers along the way. I also knew I could handle the stares, ridiculous comments and discomfort of friends, family and strangers. After all, I think as humans we are generally uncomfortable with unfamiliar situations. We don’t always know how to react in the best, most positive, way. But what I didn’t expect was negativity from other parents of special needs children. Age 3 It happened at a parent group in an early intervention center. We met while our children participated in a group therapy session for toddlers. Our children were all nearing the age of 3, meaning it would soon be the school district’s responsibility to provide education and related services for them. The discussion among the mothers centered on preschool programs and was facilitated by a social worker. I typically didn’t say much at those meetings, but I liked the information. Then, one of the mothers said she didn’t want her child in a classroom with children who sat in wheelchairs drooling. As I sat there hurt and stunned, the social worker giggled and told her she understood how she felt. The mother went on, explaining her reasoning, as I gathered up my bag and left the room to sit in the hall. It was the last parent meeting I attended there. Until my daughter aged out of group therapy, I read a book in the hallway during her sessions. Looking back, I wish I had talked with that mother. I could have told her children like she described, children like my daughter, could benefit from being in a classroom with her children. I wish I had told the social worker that instead of giggling, perhaps she could have pointed out how beneficial the woman’s child could be to others. With children of different rates of development in the same classroom, they could learn compassion from each other. Age 22 Having someone in a similar situation confront you with negativity is not something you’d expect, but it does happen. Over the past 22 years, I’ve felt it in person, I’ve seen it online and at events with parents of adults with special needs. I try to keep in mind that we are all human, and love our children no matter what their age and ability. We’re never going to like everyone we meet. We can, however, treat each other with kindness and civility, accepting we are all in a different stage of our journey. Avoiding negativity is hard, but not perpetuating it is possible. The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. 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. Want to end the stigma around disability? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.