Sue Rutan Donald

@sue-rutan-donald | contributor
Sue Rutan Donald is a wife and mother of two adult daughters, the youngest of whom is diagnosed with Aicardi Syndrome. She writes a blog about her thoughts on life called “Some of Sue’s Thoughts” on blogspot. She is a native of New Jersey who never left.

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.

Why Caregiver Respite Is Important

Respite is frequently one of the first services offered to families once their baby is diagnosed with one or more disabling conditions. Sometimes parents don’t want that service. They might have close family nearby who can give them a break now and then, and feel they don’t need the respite. I know, because over 24 years ago when my daughter was diagnosed with Aicardi syndrome and began receiving services through our state’s division of developmental disabilities, I didn’t want respite. The thought of leaving my fragile baby in the care of a stranger was frightening.  At the urging of the program social worker, and after speaking to some parents who were using the respite program, we decided to give it a try. I am glad we did, and in retrospect I can see how important it was for our family, for our daughter, and for me.  Here are four ways you can benefit from respite. 1. Reconnect with your spouse. Although it may seem that only a few hours a month is not enough time to do anything, it is enough time to reconnect with your spouse.  A “date” with your partner doesn’t have to be anything elaborate, nor does it have to be in the evening.  It can be going for coffee in the afternoon, out for a drive, or to the library together.  The point is to be together without any interruptions. Even if you spend the whole time talking about your child, it’s good to be able to express your feelings and discuss your ideas for dealing with things together. Of course, you may want to talk about other things, reminisce or just listen to music. Whatever helps you feel like a couple again. After all, you may have some trying times ahead and if you already feel connected it might make them a little easier to get through. 2. Give your other children some one-on-one attention. If you have other children, it is good to give them a little time to be with you where they feel they have your undivided attention. Sometimes when one child has many needs their sibling can feel forgotten and unimportant. Siblings need to know they are important and can express to you any feelings they might have about how your family functions, but might not feel comfortable doing so in front of their sibling.  It doesn’t have to be anything lavish, or a “let’s sit and talk” kind of thing. The point is to simply give them your full attention for a little while; just coloring together, or riding bikes, going for ice cream or taking a walk are good ways to let them know they are important to you and give them time to open up about their feelings. 3.  Remember who you are. Besides being a parent, it’s easy to get lost in all the new roles your child’s diagnosis brings you: nurse, therapist, advocate, and teacher may be some of them. After a while you might forget who you are underneath all of that.  You also might get burned out, which might lead to depression, and a feeling of impending doom. When you are switching between one role and another, day and night without a break, it can be overwhelming. Respite can give you time to do something you enjoy such as read a book, meet a friend for coffee, go to the gym, or take a nap.  If you feel the need, it can give you time to see a counselor to learn techniques to deal with thoughts or emotions you may have; sometimes talking to someone with no emotional investment in your situation can be beneficial. Respite hours can give you a chance to engage in an activity you liked doing before your world changed. It can be a tool for self- preservation and personal growth. Recharging your energy is an important part of meeting the daily challenges caring for your child may bring. 4. Your child’s independence. As hard as it can be to imagine, especially in the beginning, your child needs to be independent of you; it’s an important lesson for both of you to learn.  Perhaps it will never be possible to have complete independence, but even for short periods of time, you and your child need to know that someone else can meet their needs and keep them safe. Whether your respite person is a family member, a nurse, or a health aide from an agency, it’s important for your child to know they will be safe and cared for when you have to be away from them, and that you will come back. It’s also important for you to have the peace of mind that comes from knowing that if you must be away for a little while, your child will be comfortable in someone else’s care. It takes away some of the stress you might feel being separated from your child. Starting respite early in this different kind of life also lays the foundation for schooling.  If you choose to send your child to school rather than homes chool, you both need to be used to being apart for a few hours with someone else giving your child care. If you home school, they’ll still have therapies and other activities where you may not always be present. Giving your child the chance to meet people on their own terms can help you both grow and thrive. We all need to have contact with various types of people in life, and using respite programs can be a safe way to help children experience that. In the beginning, it can be difficult to imagine giving your child’s care over to someone else for any period of time for any reason. Using respite services can be a part of giving good care to them. By giving you a break, respite can help you find perspective about your situation and see the good things, rather than focusing on the practical ones. Caring for yourself and other family members can reduce everyone’s stress level and make it easier to deal with the frustrations and challenges that are part of family life with a child who needs extra care, and it can help you find the joy your child brings. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Katarzyna Bialasiewicz.

Betsy Pilon

What Pictures Not to Post Online of Your Child With a Disability

As parents of children with disabilities, we have a complicated job. Social media can connect us easily to others who “get” our path and we get comfortable with sharing the good and the bad, the ups and downs, the heartbreaks and triumphs. But, there’s something we have to ask ourselves before we share certain pictures of our children. And I’ve seen this issue increase across groups and news feeds where people want to show “the hard side” of parenting a child with a disability. There’s one, big, simple question to ask: Does this promote dignity and respect for my child? Please, fellow families, please take a moment and pause before you post the picture of your child laying in their own bodily fluids. Please remember while bathtub pictures are embarrassing for teenagers to reflect on, pictures of children covered in feces or vomit takes it to a level that does not promote dignity. Would you like the same posted without your consent? Your narrative of struggle and heartache is valid. But please, please remember a picture is worth a thousand words. Make sure those words aren’t those that cause more heartache to you or your child. We want to hear your story. Become a Mighty contributor here . Thinkstock image by dangphoto2517

8 Questions That Might Keep You Up at Night

It’s 3 a.m. and I’m tossing and turning, listening to my child breathe through the baby monitor as I have for over 20 years. Many parents have nights when their thoughts keep them from sleeping. When you’re the parent of a child with complex medical needs or a disability, no matter their age, your worries can be numerous. Besides the usual parental concerns about the right school, the right discipline, and your child’s social skills, there are things unique to your child’s diagnosis — in our case that’s Aicardi syndrome. These are eight questions that might keep you up at night:1. Are we seeing the right doctor? There is no doubt the right doctor is crucial to getting the best care for your child, and it’s not always about the most knowledgeable doctor. The most knowledgeable doctor, if they have a terrible bedside manner, is not going to help you and your child. There must be a good relationship between the doctor, child and parent. I like a doctor who will listen to what we have to say and who is able to explain things in terms we can understand. They must communicate clearly, and be willing to do research or consult with others in the field. This evokes a feeling of trust between patient, family and medical practitioner, which I believe is vital when you’re struggling to grasp the enormity of new terms flying toward you. When everything is so new, you try to keep your head clear enough to comprehend volumes of information. An understanding physician is vital to moving past the diagnosis and learning to handle all the demands of a different kind of life.2. Are we using the right medication? You might start doing research about your child’s diagnosis and the medications available to treat the conditions that are now part of your every day life. You want answers to your questions and concerns, and you want reassurance. 3. Are we doing all the best therapies? Starting with Early Intervention and continuing throughout childhood and beyond, therapies might accompany your child’s diagnosis. Every time you hear about a new therapy or a great therapist those middle of the night doubts can creep in. When this happens, look at your child and your unique situation. If what you are doing seems to be working and you’re satisfied with the therapist, you are probably using the best you have found. It’s always good to keep an eye/ear out for what else is available, but you will know if things are going well or not. Trust your instincts. Keep perspective and look at the big picture. Just because something works for one person, doesn’t mean it works for everyone. Sometimes you have to let well enough alone.4. What if we lose your health insurance? This is a big one– changing health insurance is not an easy or comfortable thing to go through and can cause countless sleepless nights. Changes in insurance frequently come with a change in doctors and covered services. This is a nightmare for the family of a child with multiple medical needs. How do you condense the years of a complicated medical history into a report that gives an accurate picture of all the medical issues to a new practitioner? You hope the current doctor will be available for the new doctor to consult if necessary, and willing to help you transition by being open to your calling to ask for their input until a new relationship is formed.5. What if funding is cut? This is as stressful as losing or changing health insurance. There are programs available that are funded by the government (federal and state), as well as nonprofits. Many nonprofits receive some government funding, and there are of course state agencies that have that same funding source. Rules, availability and eligibility guidelines constantly change. By the time you figure out one program it seems it’s gone or changed in some way. It happens at such a fast pace that frequently your case manager might not be able to answer your question, or may give you an incorrect answer. Thinking about losing your respite, or camp or special equipment funding is stressful indeed. Your child will at the least be disappointed and at worst be in danger for lack of funding for a necessary piece of equipment. Your family would feel the bad effects of losing respite, if you have it. It’s important to try to keep on top of changes by attending informational meetings, fairs or webinars as offered. I’ve found the best way to find out about these events is from other parents. 6. How can we keep things going on such a tight budget? Finances are another one of those things that can change quickly. Losing a job is the biggest nightmare because not only is there no money coming in, but your health insurance could be gone. Your child still has the same needs so how are you going to pay for their supplies, therapies, medications, doctor visits and meet their needs? Even if there is no change in employment status or insurance, costs rise at a much faster rate than pay. Staying on top of finances can be frustrating and is stressful. It’s one of the biggest worries.7. What if I get hurt and cannot take care of my child? This is another disastrous turn of events that is always a real possibility. You try to take care of yourself, but between the actual physical care of your child, advocating for them, holding down a job, caring for other family members and a home, there is very little time for self-care. Even if you manage to carve out time for exercise, a hobby and eat well, accidents happen. You try to have a plan in place for emergencies, but it is still something that will keep you up at night because nobody takes care of your child the way you do. So many nuances of their care cannot be adequately conveyed because the knowledge of what a certain look or sound means is a result of being there 24/7. The most you can do is write everything down and keep it available in an emergency packet. 8. What if my child outlives me? What if I outlive my child? These two questions go together and are the most haunting for me at 3 a.m. You probably have made arrangements for any eventuality, but those two things are hard to think about. You imagine your child not understanding where you are, being cared for by someone who perhaps doesn’t know what a sound or motion means. Worse, what if the person caring for them doesn’t have the patience you have? Nobody knows her like you do. Those thoughts might run around and around in your mind — it’s upsetting. And the thought of you outliving your child can take your breath away. When they are sick, as you stand by their bed in the middle of the night watching them sleep, or listen to them breathing through the monitor, you wonder, “is this the illness she can’t recover from?” You think you would not be able to go on, you wonder, against your will, how you could possibly ever recover from that event. You may know people who are living with this unimaginable pain. It scares you. It makes for a sleepless night.These are some of the things that could haunt parents of medically fragile children on sleepless nights. It helps to share them with other parents, write them down, and do what you can to ease your mind. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by: KatarzynaBialasiewicz

What I Wish Strangers Could See About My Daughter With Disabilities

There are many things about my adult daughter that I wish strangers could see. I wish people would look past her disabilities, past the wheelchair and see her as a young woman. She is a person with likes and dislikes, the same as everyone else. From the beginning of our life with disabilities journey, I have tried to help others see that she enjoys many activities in her own unique way. Here are five ways I wish people could see her. 1. Just because she can’t run, it doesn’t mean she doesn’t enjoy the feeling of moving fast. She has always loved it when whoever is pushing her in her wheelchair runs. I remember the first time I observed her in a gym class with a peer helping her play T-ball. The memory of the joy on her face as they rounded the bases, her head tipped back and her ear to ear grin still brings me to tears. She loves the way it feels to move, whether she’s rocking, swinging while waving her hand in excitement, cooing while being pushed in her chair on a path at the park, or in our family van. I think most of the population enjoys the feeling of motion. 2. My mid 20’s daughter loves parties! Most everyone enjoys a gathering of their peers. In my daughter’s case, the louder it is the more she likes it. The sound of people talking and laughing, music, dancing, sparkling lights and the general festive air put a smile on her face.  Even just putting on her “party shoes” lights up her eyes. The young women I know feel happy when they put on their heels to go out. When it comes to party food she savors every bite of her favorites, cake and ice cream, raising her eyebrows in anticipation.  Sweets are the best part of the menu for many partygoers. 3. She doesn’t like getting out of bed early, especially on the weekend, looking up at me with one eye open while groaning and trying to snuggle deeper into the nest of her bed. Sleeping late and taking it easy are the reward for getting up on time every weekday and going to work or school or wherever people go during the week. Having a day or two to take it easy and recharge are as important to her as anyone. She doesn’t want to be woken up and expected to function, preferring instead to lie in bed listening to the radio for a while before having breakfast. 4. My daughter loves to be with her family. She is happiest when we are all home and together. She is Daddy’s little girl, even at the age of 24; she simply adores him and tilts her head to listen to his voice as she smiles a little smile. She feels sibling rivalry and scowls when she thinks her sister is getting more attention, yet loves hanging out with her while watching movies or listening to music, casting occasional glances at her with a contented expression. When she and I go someplace such as a concert or the mall together, she enjoys the one-on-one time just as most daughters enjoy that time with their mother, sitting up a little straighter and holding her head a little higher. She has her favorite places to go, favorite movies, stories and TV programs. She laughs at funny programs and furrows her brow in annoyance when her show is interrupted. She also binge watches certain shows. Most people I know like doing those things. 5. She loves going places and seeing new sights. When we go out in the van or she is on the bus for her day program, she looks out the windows while excitedly waving her hand in the air in front of her. When we go on vacation, she likes taking in all the different sounds and smells, turning her face to the sun while taking a tour boat ride, and looking around the souvenir shops. Of course, while on vacation, eating at restaurants is a must and she likes doing that, too. She is not that happy about sleeping any place other than at home in her own bed, and spends restless nights groaning and sighing trying to get comfortable. A lot of people miss their own bed at home while staying in a hotel or at someone else’s house. My daughter, although dependent upon us for her care, is a person in her own right, and I really wish more people could see that. We want to hear your story. Become a Mighty contributor here .

Lauren Casper

Why It Is Good for My Son With Autism to Go Out

When you read articles about autism on the Internet, sooner or later (likely sooner) you’ll come across some common opinions in the comments section. They go something like this: “Why don’t you just keep your child at home?” “Here’s an idea: Your husband could stay home with the kids while you go grocery shopping alone!” “People are paying for a meal. They don’t need to be interrupted by your unruly child who can’t handle the restaurant.” “If your kid doesn’t do well on airplanes, then don’t fly!” “Hire a sitter and go to (fill in the blank with any public place) alone!” It’s sad that this is such a widely held view toward children (and probably some adults) with autism. My husband and I hold an opposite view on going out and about with our children, one of whom is on the spectrum. Here’s why: 1. It’s good for him. My son is a curious and bright little boy. He enjoys being with us and we enjoy being with him. It would be incredibly unfair to him and his development to limit his life experience to school, the doctors offices and home. To keep him away from public experiences that are tough for him would also perpetuate a cycle of disability rather than ability. My son doesn’t do well in restaurants — the people, sitting, the smells and the noises are all a bit much for him. But if we were to simply cross that off the list of things we do with our son, he would never learn how to handle going to a restaurant. We aren’t taking him to swanky five-star restaurants and expecting him to sit quietly for a two-hour meal. But we do occasionally take him to a family-friendly diner when it isn’t too busy and hope for grace from the staff and other customers. We do take him to the local coffee shop and work on sitting at the table without getting up even if it only lasts five minutes. Sitting at the dinner table at home isn’t good enough practice for sitting in a restaurant, just like gathering items from the cupboard isn’t practice for grocery shopping. The task itself typically isn’t the issue — it’s the environment. The only way for him to get used to being out in the world and overcome some of his anxiety is to get out in the world. It isn’t easy for him, but it’s good for him. 2. It’s good for us. The idea that our family should be held hostage in our home is absurd. Of course, there are days we’d like to go for an outing, but we recognize that it’s a terrible day for it (this could be true for either of our kids) so we stay in. But usually, we do things together whenever possible. On the weekends, we enjoy family time and sometimes that looks a little messy, but it’s good for us to get out together. If we were to hire a sitter for our son every time we wanted to leave the house, it would feel to us that we were no longer treating him as a valued member of the family but as a nuisance. We love him and we love doing things with him. The only way for us to learn how to teach our son life skills and how to manage in different scenarios is through trial and error. One outing might be disastrous, but through it we learned how to be better prepared the next time. This doesn’t downplay the enormous struggle it can be to do outings as a family. Sometimes I am tempted to say it isn’t worth it or it’s just too hard. But it’s good for our family to be stretched and challenged and to get out together. 3. It’s good for the general public. The fact that there are so many people who think our children should be kept out of the public eye is disturbing. It reminds me of a time not so long ago when you simply didn’t see people with special needs out in the community. Why? Because they were institutionalized. People who had so much to offer this world were hidden away because of fear, ignorance, apathy and a lack of compassion and resources. Today we don’t do that because we know better. We know that children with autism grow up to be adults with autism. And we know now that they can be incredible contributions to society just like anyone else. We know now that they have much to offer and teach us. It’s good for the public to get used to seeing people with differences out and about. It’s good for us to see a new way of learning and thinking and doing things. It’s good for us as a society to learn to live together in unity and to encourage each other in our unique gifts and passions. It’s good for us to help each other through times of trouble and to lean on one another for community and support. And one of the ways we do that is by being together, in public, with all kinds of people of all kinds of abilities. So that’s why we take our son to the grocery store, the library, the community pool, the park, the coffee shop, the family diner, Colonial Williamsburg, church, the basketball game and more (even if we only last a little while.) It’s good for him. It’s good for us. And it’s good for you. P.S. Don’t get me wrong: Sometimes we do get a sitter and head out for some much needed kid-free outings. P.P.S. What’s right for us isn’t necessarily what’s right for every autism family. But that’s for each family to decide, not the general public. A version of this post originally appeared on LaurenCasper.com. The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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.

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

Life After My Special Needs Daughter's Graduation

Sue’s daughter at her graduation. As my daughter, who has multiple disabilities which include seizures, approached her 21st birthday and graduation from high school, I didn’t know what to expect. I was very happy we both survived 18 years in a one-size-fits-all system. I was glad to be done with IEPs, yet a little scared of what life would be like without the predictability of the school schedule. Day programs and available services vary widely from area to area. Although I educated myself about our options before she graduated, I was afraid of what life would be like. Here is some of what I’ve learned since. 1. The most important thing you can do is network with other parents. I found this is the best way to find information about day programs, and opportunities for recreation and socialization. The center my daughter attends is good, but not perfect. The ability level and age range of the other participants is wide. My daughter is in her early 20s, and the oldest person in her program is in his late 70s. She enjoys going and there is enough to keep her interested, but she needs opportunities to socialize with her same-aged peers. We found an art program with participants in her age group, and this is where we are able to meet other parents. Social media is a big help in finding church programs and special events held in our area geared toward recreation and fun socialization such as game nights or dances. There are activities out there, but finding them isn’t always easy without the help of other parents. 2. Flexibility is necessary because routines can change without notice, especially in the morning. We were used to a very early pick-up time for school. The day program starts later and runs for fewer hours per day than school. One positive change is our later wake-up time. One negative is cutting back on hours at my job due to the increased time I need to care for my daughter before she leaves. Luckily my employer is flexible, so I wasn’t forced to find a new job, or stop working altogether. Also, the bus doesn’t always come at the same time. They do their best, but they are picking people up from all over the area, so if someone is not going that day, or isn’t quite ready when they arrive, they may be earlier or later than usual. We are fortunate that my daughter’s program includes transportation; not all programs do, which leaves parents doing the driving, carpooling, or hiring a car service. 3. I sometimes feel jealous of the freedom to come and go that some of my peers have. Most of my friends are becoming empty-nesters, free to have spontaneous weekends away or last-minute social engagements. I must plan everything in advance, such as who will be caring for my daughter, before accepting an invitation. My friends are very understanding and accommodating of my restrictions, but I still feel that little twinge of envy for their spontaneity. 4. Finding new physicians and health care facilities can be hard. I learned when searching for new doctors that the word “Medicaid” can close many more doors than it opens. At age 21, pediatric practices and the children’s hospital can no longer treat my child. I knew the time was coming, but I still wasn’t emotionally prepared. Adult practices are a different atmosphere from pediatric ones. Gone are the cheerful, colorful walls and cute animal pictures, smiling faces in the waiting room and cartoon character Band-Aids. Instead there are muted walls with framed landscapes, gauze and tape and somber, bored faces tired of waiting. I’m finding it hard to replace 20-plus years of trust I had in the doctors and their office staff. There’s no more instant recognition by the staff and doctor knowing my daughter’s history. It’s not so easy giving a brief synopsis of a complex medical history to someone on the telephone before getting to the current concern. For me, finding the right fit is exhausting, and time-consuming. By aging out of the school system and doctor’s practices at the same time, a whole support system has been removed from our lives.  It takes time to build up confidence in a new approach to lifelong issues we’ve learned to handle a certain way. We are starting over, and those old feelings of self-doubt in decision-making I left behind many years ago have returned. 5. Life takes on a slower pace. Our days start later, and we have more free time. We are no longer going at the frenetic pace the school years induced. It’s not entirely a bad thing. I’ve learned to embrace this more low-key way of life. We have become creative at finding things to do that fit our daughter’s likes. She loves music, so we look out for local concerts in the winter and outdoor concerts in the summer. A walk at the park and a picnic is a pleasant way to spend a weekend afternoon in the summer and warmer days in the fall. I used to fear life after my daughter turned 21, but I have come to embrace it. I thought it would be sad and lonely, but it’s not; it’s just different and challenging in a new way. At the end of the day, my daughter is healthy and seems content, which is what the goal has always been. The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

To My Parent Friends Who Don't Have Kids With Special Needs

To my parent friends who don’t have kids with special needs: I need to tell you a few things as the parent of my now-adult daughter with significant medical needs. In the beginning of our journey with our daughter’s medical, physical and developmental needs, I felt alone. I didn’t want to hear other mothers talking about their child’s minor illnesses such as ear infections and the inconvenience of their antibiotic treatment. At the time, I was injecting my infant with steroids in an effort to control her hundreds of daily seizures, making daily doctor’s calls, and running to the pharmacy, lab, hospital and early intervention therapies. It angered me that you seemingly only had toworry about the occasional 10-day course of antibiotics. Sue and her daughter I was feeling such anxiety and fear about my baby that I thought nobody else would understand. But somehow along the way, I realized you were feeling the same feelings I was. All of us at some point in time deal with the fear for our children that illnesses bring.  Fear is fear. Twenty-three years later, I am now able to see that while our details are different, emotions about our children are not. I need to tell you a few more things. I appreciate your friendship and understanding of my moodiness on days when I don’t see all the good stuff. Those are the days your smiles and stories about what is happening in your life help me more than you could ever know. It helps me feel like myself. I appreciate the admiration I see in your eyes when I speak of some of my experiences with my daughter. I hope you see the admiration in mine when you share your experiences youface with your family.  We’re not living the same details, but the emotions are the same, and really, we are all pretty amazing! I appreciate how you get outraged when someone treats my daughter or our family unfairly. Thank you for offering a helping hand, whether it’s an offer to pick up an item I forgot grocery shopping or driving me to an appointment when I’m feeling ill.  Offering to be my emergency back-up for meeting the bus if I get tied up on an errand is more valuable than you probably realize. Even if I decline the offer, it’s comforting to know help is available if I need it. When we are messaging each other and crying together over emotions that rise up out of the blue, you are my lifeline. You’re helping me see that I am not alone, and we may not have the same details, but we have the same feelings and fears for our kids — even when those kids are in their 20s. My friends, you are simply making this life I lead easier, and that is more valuable than you know.