These stories talk about raising kids with special needs.
There is no "normal" to parenthood. Having a child with heightened emotional, physical or developmental needs can leave parents with even more questions and fewer resources.
These stories talk about raising kids with special needs.
There is no "normal" to parenthood. Having a child with heightened emotional, physical or developmental needs can leave parents with even more questions and fewer resources.
By Holly Ruxin
I’m not really sure of the specifics of how this message came across to me as I was growing up, but I am pretty sure that the resounding message across the board was: achieve. Achieve good grades, achieve acceptance into a good college, achieve acceptance into a good graduate school, achieve a good job, achieve money, at some point achieve a relationship and a family. And if you can achieve each of these tangible accomplishments, then you have a life worth living. I don’t suspect those words were ever spoken to me exactly like that. But I am pretty sure that the message was continually communicated through my parents, teachers, mentors, family members and friends.
So I worked to achieve - and to achieve the life on paper that looked like I had it all. And then one day I didn’t, well at least not on paper. After having a wonderful baby boy who was growing into a wonderful toddler and then into a thriving young child, something wasn’t progressing the way it was ‘supposed’ to. Milestones were soon not being met and at the old age of 4, almost five years of age, our prefect son started missing and then losing all of his milestones: his ability to talk, to walk, to use his hands, to pretty much do anything physically or outwardly mental.
While any situation like that is difficult to comprehend and deal with, the slowness of which this all transpired over the course of several years was especially difficult to get one’s mind around and incredibly more difficult for the heart to understand. This situation was not helped by the fact that no one seemed to know what was wrong with him. All of the accomplished doctors who had achieved their education at the top hospitals, held jobs in the top think tanks, and had achieved renown in their fields – they were at a loss. And thus were we. As the years went by and the prodding and poking and traveling and discoveries led to dead ends, we came to understand the deep limitations of our knowledge about the brain and the vast limitations of even those who had achieved all that they were supposed to. The ones who had accomplished all that they were supposed to as society defined for them, still could not help.
There are a myriad of issues to navigate and are involved with taking care of a child who is losing skills -- therapies, schooling, testing, and the list goes on. But the most difficult thing for me to wrap my head around was what am I going to do with a child who can’t achieve? A child who can’t achieve all of the skills and tangibles in a lifetime that I was taught that mattered. For our young son: talking, and art, and drawing, and reading, and sports, and getting into schools, and making friends …. all of the things that my friends and other family members with kids were focused on around me, he was clearly not going to achieve any of it.
How do I not feel like a total failure? If my child can’t keep up with the expectations of the society that we live in, any of the expectations, then honestly, I couldn’t figure out what ultimately was the point of his existence? And I struggled with this thought for more time than I am even able to admit. Until finally I started seeing how misguided I was and how I was looking in the wrong direction and how I had been taught to look in the wrong direction. I was facing the wrong way.
This is not a realization you come to overnight or even over the course of a year. This is a realization that you come to after years of thought and observation and honesty with yourself and with those around you. What I started to realize and the new direction that I was now facing was the beginning to a new understanding. Instead of all of the tangibles I had been taught to focus on, the achievement I and most people I know were striving for was ultimately to be treated with love and kindness and respect, and to ultimately treat all others in the same vein.
It has taken me years to understand what that means. And striving for that understanding takes one small step taken one at a time. Over the course of my experience, any time that I questioned the way forward and got caught back in the old messages of our day, all I had to do was look at my eldest son (all kids exude this innocence and understanding). And finally what became so abundantly clear to me is that Trevor has achieved more in his short lifetime than any person whom I have ever known. I began to understand that he was born with the understanding of how to garner unconditional love from anyone around him and born with the ability to give unconditional love back no matter what the circumstance – he exudes only kindness and compassion and heart. And as a result he vastly changes the lives of every person he meets. He is an incredibly bright light who smiles at strangers, who can’t talk but has laughter that can melt an icecap, who never complains, who sees joy in the simplest of gestures.
Trevor has achieved something that as a parent I can only ever hope for my other two children and for myself and for any human being: he has achieved the ultimate goal of peace born out of kindness and love for one another.
By Kate MacHugh
There is a saying that every child is a miracle. My sister, Makenzie, is a miracle in the purest sense of the word. Makenzie's birth mother found out that she was pregnant and decided to terminate her pregnancy. She did not have enough money for the abortion so she attempted to self-abort. Makenzie came in to this world weighing only 1 lb 4 oz. She was a micro-preemie and was diagnosed with cerebral palsy, hydrocephalus, and was microsphalic.
Makenzie has a shunt in her brain which takes fluid from her brain and drains it in to her stomach. She was placed in foster care until she came in to our lives at age 2 and a half. We were told she would never sit up, talk, or walk. She would essentially be "total-care" her entire life. She could say "mama" "ba-ba" and "da-da." She could army crawl across the floor and hold a bottle to her mouth, but not much more. We knew that it would be a long road ahead to care for her but we loved her immensely and immediately.
One night not long after Makenzie came to us,my mother had a dream she was bathing her grandmother who had passed away. Her Gummy told her that Makenzie's middle name should be "Pearl." A pearl, she said, was something that started out as an irritant, a piece of sand that got stuck inside an oyster but became something beautiful.
We adopted Makenzie Pearl MacHugh on National Adoption Day, November 23, 2007. Makenzie is now ten. She talks in full sentences, walks with out a walker, and loves playing outside and make believe. She is truly a miracle.
In June 2013, we almost lost that miracle.
Makenzie had a shunt failure and was rushed to St. Christopher's Hospital in Philadelphia for emergency brain surgery. I will never forget being in the hospital with my mom while she sobbed, terrified that Makenzie would not survive the surgery, and being afraid of the same myself. At 4:00 in the morning she was taken in to surgery. They shaved half of her head and cut open her skull to repair her shunt. We sobbed tears of joy when she was wheeled back to us groggy, but alive. My mom and I spent the next four days at her bedside until she was allowed to return home.
Six weeks later, we were faced with the same horror. She would need a second emergency surgery because the shunt had a nick in the catheter. We came so close to losing Makenzie twice that I realized I could never bear to do so. She is an incredible child and a wonderful human being. She has so much determination, resilience, and fight in her. She has been faced with the task of learning how to walk with legs that do not work, speak with a mind that does not process correctly, and live a life with a disability because of her birth mother's selfishness. Makenzie survived her own abortion and shown the world how valuable a human life truly is.
By Melanie Lundheim
Peanuts can no longer kill my kids.
On January 3, 2014, my children Soren and Tessa Lundheim were the 100th and 101st patients to complete Dr. Whitney Molis’ peanut oral immunotherapy (OIT) program. Before treatment, invisible traces of peanut could – and did – trigger life-threatening anaphylactic reactions in Soren and Tessa.
From a young age, our kids were well aware they could die from exposure to peanut if they weren’t careful. Many times, they were star advocates for their own safety, turning down offers of peanut-containing treats, asking about ingredients in foods served to them, and making sure they had their life-saving medications with them at all times.
Despite our best efforts to keep Soren and Tessa safe, our kids have had numerous anaphylactic reactions to peanut between them over the years. At age five, Soren cried out to me for help just minutes after I tucked him into bed. When I got to his room, his upper lip was blue, and quickly swelled like a special effect in a movie. Thinking at first he was having an asthma attack, I gave him his inhaler, followed by a dose of antihistamine before finally injecting him with epinephrine. A couple of months later, Soren had another anaphylactic reaction at school, followed by a second, “biphasic,” reaction about 20 minutes later in the ambulance en route to the emergency room.
Tessa has had so many anaphylactic episodes inside and outside of school settings, she’s become an old pro. Visits with the school nurse, as well as the paramedics, had practically become routine for her. Tessa’s reactions typically started with tingling in her ears, followed by wheezing, sneezing, upper-body flushing and feelings of impending doom. Then she’d get an uncontrollably runny nose and full-body hives.
Soren and Tessa were so vulnerable to peanuts that they qualified for protection under Section 504 of the Rehabilitation Act of 1973 at school. Their school district partnered with us to create and implement Section 504 plans for our kids. District administrators used the plans to ensure caregivers knew how to prevent, recognize and respond to peanut exposures in Soren and Tessa. These caregivers included teachers, school nurses, coaches, administrators, recess and lunch aides, chaperones, substitute teachers, custodians, volunteers, bus drivers and others.
The newly emerging approach for addressing peanut allergies - peanut OIT - was only being performed in clinical-trial settings at first. Given our kids’ history of asthma, as well as prior anaphylactic reactions to peanut, they didn’t qualify for the trials. Outside of trial settings, peanut OIT was only available from doctors in faraway states. I gave up hope of receiving local peanut OIT for my kids anytime soon and decided to move somewhere else with Soren and Tessa in order to get help.
It was then that I learned about Dr. Whitney Molis – an allergist administering peanut OIT in Des Moines, Iowa — just a four-hour drive away from our home. Under her expert care, Soren and Tessa began treatment. Despite the long drive, we looked forward to every appointment by keeping the end goal in mind.
Over the course of nearly six months, Soren and Tessa worked their way up to the final dose of 21 peanuts on January 3, 2014 – their peanut OIT graduation day. While the process certainly didn’t go without incident, our commitment to completing the program has been worth every reluctantly consumed peanut and every mile of the commute.
Friends can now invite Soren and Tessa to their homes without worry of exposing them to peanuts. They can go on field trips without specially trained chaperones, or me, at their side. At restaurants, cafeterias and ice cream parlors, Soren and Tessa can now choose any item on the menu — whether or not it was made on equipment or in a facility that processes peanuts. They can eat Blizzard® Treats, peanut-containing candies and assorted chocolates, just like other kids. It’s so freeing!
Over the holidays, we were able to attend family parties without having to ask hosts to put the bowls of peanuts away or tell us about ingredients used in the foods being served. Best of all, we can breathe easier knowing life-threatening peanut allergies are in the past for Soren and Tessa.
By Holly Standfield
So what is it like to have a child with a disability?
It is kind of like a death. No matter how much you plan to allow your children their freedom to reach their own goals and dreams, quite naturally you have a few dreams for them as well. You dream of birthdays and holidays. Santa and presents. Playing dress-up, doing arts and crafts, playing Chutes and Ladders, dance classes, sleepovers, team sports, high school and college graduation, getting married, and having children of their own to love. And, though many of our autistic kids will grow up and have and do just those things, more than half of them won’t. Not without a great deal of help and not likely to resemble the typical joy of those things. You mourn for what might not be. You mourn for what you and your child is missing now. And, later, you may mourn for what will never be.
You are ever so deeply in love with the child you have. She still does adorable things you want to share with others. She loves you too, but the rest of world won’t always get to see it. You will see pity in people’s faces and they won’t ever understand the deep and real joy this child gives into your life every day. As a parent, you always have pride in your children. People won’t see what you are so proud of. That can be a lonely feeling.
You don’t have to try every diet and therapy that is out there. Just because my child has autism doesn’t mean that Jenny McCarthy’s gluten free diet for her autistic son is going to work for my daughter. Of course, some have had great success while others move from one fad to another. You don’t have to try or read everything that is written about Autism. Most of it doesn’t pertain to your specific circumstance anyway.
Guilt blasts you from all directions. You want to have the perfect birthday party. Your child may not be the least bit interested in the presents, and you will dread the disappointed look on the gift giver’s faces. You sometimes have to decide not taking your child to others’ parties. You want more than anything to give your child the experiences typical children have and feel guilty when you don’t. But sometimes it is simply too overwhelming for you both to undertake. It just seems you can never do enough and that guilt weighs more than an elephant.
You live with uncertainty of the future. None of us know what the future holds. If you have a “typical” child, you can be mostly self-assured they will have friends, be self-sufficient, and love. You know who to leave things to when you die. If you have a child with a disability, you don’t know how to plan your estate. And what if they grow to do well and are able to care for themselves? Every option is insufficient. Uncertainty can affect every part of your life. Will she ever be toilet trained? You just won’t know until it happens or it doesn’t. You live with the fear that one day your aging, vulnerable child will lie sick or dying without the comfort of someone who truly loves them.
You will lose friends and cut strings with some family. Not everyone believes that your screaming child has a behavioral problem. “Just give them a good spanking!” I was a firm believer in spanking until I had my daughter. She literally doesn’t understand the concept. To her, it is hitting and hitting seems ok to do where other children know that it is a disciplinary action to make sure they stop doing it. I have had to let go of some friendships that I never realized were poison through this ordeal. Even my neighbors have stopped letting their girls play with Bailey since her diagnosis. It’s not leprosy folks. Don’t look back on the lost! You will gain some beautiful, healthy friendships in the process.
You will most definitely experience marital issues and severe depression. Both parents. Seek help! There are outlets. Whether it is through a blog or message boards or a real person, seek someone out. No one should ever go through this alone.
Spontaneity is no more. You can’t just get up and go whenever you want to. You have to plan an escape route from any activity or location. You have to pack or plan things to distract her if she becomes upset. You have to determine if there will be straws for drinks because she cannot wield a cup the same as a typical child. If they aren’t potty trained, you will worry about where you can take your child to change a diaper that will afford you both some dignity. Everythingmust be planned and considered.
You grow an incredibly thicker skin. People stare. They will stare with antipathy, thinking your kid is simply behaving badly. They will look in curiosity, because that is our nature. They will stare in fear or pity. And then you recall a time in life that you, yourself, made a judgment about another person in public. Exasperation mixes with humility and all you want to do is get out of wherever you are as soon as possible. Try as you might, you can’t escape everyday life.
Everyone has an opinion. There are those who are certain they know how to “fix” her. There are those who don’t think you do enough. I have had a friend who told me that having her in all of the therapies would be committing social suicide. There are those who believe you to be a glorified soul. Some opinions are meant well but are only tolerated for so long.
It’s love. A love that you, if you are a parent, know exactly what I’m talking about. A love that, if you don’t have a child born with difficulties in this crazy, judgmental world, you can’t. Unconditional doesn’t even begin to envelope it. Incomprehensible. Unlimited. Unending. It’s the kind of love that haunts you every moment of every day. You can see that love behind the eyes of every special needs parent you meet. We are brimming with a love we never could have foreseen. We are overwhelmed with concerns we never could have imagined. We are, easily, at capacity almost every day. Yet, when necessary, we find that capacity expands. We aren’t better parents than other parents. We aren’t saints. Our children aren’t lucky to have us but we are lucky and ever so blessed to have them. Even through the challenges of having an autistic child, none of us will walk away from this life without having grown from loving them.
You don’t ask for all of the obstacles thrown at you in life. Life isn’t easy. But I have become more than I ever thought that I could be and it couldn’t be more worth it.
Holly writes about her daughter’s initial diagnosis in the next post titled “Discovering Autism.”
By Holly Standfield
Five months after we relocated to central Florida, I had joined a local MOPS (Mothers of Preschoolers) group in hopes that I would make some friends and my 2 year old, Bailey, would acquire playmates and flourish. We had not been around many children her age and I was amazed at how communicative the other children in our group were. I honestly wondered if their parents were teaching them to write speeches.
She was, and is even more so now, a brilliant child. She read her first sentence just after turning two years old and knew all of her shapes, colors, letters and could maneuver around a tablet better than I could. She knew the names of thirty dinosaurs and she was very organized and nondestructive. She could point objects out in a photo, she could sing songs and literally recite full episodes of Caillou. She had a vocabulary of over three hundred words but somehow, she could not form a sentence longer than two words long. “Want milk.” “Want that!” She also repeated things to the point of wanting to pull your hair out. Others would say it was normal toddler behavior. “That’s how they learn things!”
Since she had this obvious wealth of knowledge, I never once thought there was anything off. I just thought she enjoyed learning the incredibly challenging before the easy stuff like toilet training. Every parent and parenting book will tell you a million times over that children will come to do the things they are delayed in within their own time. What they don’t tell you is that some of those very delays mean something is amiss.
In late September of 2012, I took Bailey to the pediatrician for breathing problems. Her oxygen levels were low. They called an ambulance and brought in an oxygen tank and proceeded to put on the breathing mask. She flipped out. So much so that the pediatrician began to ask questions about delays, eye contact and certain reactions that she has to sounds, smells, certain textures, etc. Does she have a sense of humor? There was mention that she had seen behavior like this among children with Asperger’s. It had never even crossed my mind.
Here I am, sitting in an exam room waiting on an ambulance to arrive, being told that she is being hospitalized for pneumonia and “Oh! By the way, I’m not a behavioral specialist but she probably has a form of Autism.” I remember the nurse bringing me a list of contacts for child development centers just as they were closing the ambulance doors. The ride seemed to take forever. It was THE absolute loneliest moment of my life. She was funny! She is a genius! Nothing is wrong with her. But I knew deep down that the doctor was right. I just never had anyone point it out so matter of factly.
Two months later, she was diagnosed with High Functioning Autism and Sensory Processing Disorder. She was three and a half years old. She needed to be placed in the school system and also occupational therapy, physical therapy, speech and behavioral therapy (also known as ABA).
How did I not see the signs? She was such a sponge on the big things that I didn’t notice the small, most important milestones. I hadn’t given a second thought that she didn’t start climbing things until almost 3 years old. Immediately, I was looking for something or someone to blame. Was it the environment? Was it the vaccinations? Was it passed on from me? Or the relatives on both sides that have schizophrenia? We participated in a chromosome testing in hopes it would provide some information on where it went wrong. Everything came back normal.
There are no instructions when you get a diagnosis for Autism. No person diagnosed has the same attributes or red flags. Experts know techniques to help out through forms of therapy but there is no cure and no clear path made for you by the diagnosis. Will she regress? Will she be able to live on her own when she’s an adult? Will she be a contributing citizen? Questions, questions and more questions. I knew I had to put on my big girl panties and do whatever it took.
My feelings when I left that office were of defeat and hopelessness. I was met with the same feeling with every phone call made to the insurance company when they would say that they don’t recognize Autism as a disorder needing the therapies that were recommended for her. We fought for 7 months to gain speech therapy and fought another 5 months for the behavioral therapy which starts later this month. Somehow, we still have not been able to obtain occupational therapy. I have taken classes offered by CARD (Center for Autism and Related Disabilities) services and I have made my own home into one giant daycare/visual therapy setting. A year later, the tantrums are less and she is thriving but I still feel that defeat and hopelessness at least a couple of times a day. I also find myself using the same calming techniques that we use with her. Breathing HELPS! "Smell the roses. Blow out the candles."
Bailey started school last April and within the first 3 days, she was speaking 8-10 word sentences. They weren’t perfect but they were coming from her tiny voice. We started having conversations that only lasted about 30 seconds at a time but she was speaking and no matter who I was talking to, I would immediately divert my attention to Bailey just to hear whatever beautiful message was coming out of her mouth.
Her brilliance continues to shine. She is currently 4 ½ and has been tested at a second grade education level. She still reads any book she can pick up, knows her continents, all of the states, most of the countries, more dinosaur names than I can even count just by looking at them, and is currently learning the periodic table of elements. She is extremely visual and has a fabulous sense of humor. However, she is still not even close to potty training. We are faced with the possibility that she may not move on to kindergarten if the potty training doesn’t take by next school year.
My husband travels at least 85% of the year and this leaves me to handle all of this alone for the majority of the time. Life gets lonely. You feel overwhelmed every single day. I know things could be worse. She could be nonverbal. She could be physically disabled. She just needs some potholes filled and she cannot do it on her own. Nor can I do it all on my own.
Holly shares her day-to-day concerns in the next post "What No One Tells You."