Parenting

Watching your child get diagnosed with a health condition and adjusting to the new realities of life with a child with a medical condition can feel overwhelming and frightening.  If your child just received a diagnosis, you may worry about what the future holds or seek out a sense of hope that everything will be OK.  Here are five gentle reminders for anyone whose child was just diagnosed with a disability or chronic illness. 1. Your child is still the same child you’ve always loved. When your child receives a new diagnosis, it may be easy to view them through the lens of their medical condition, especially if you’re constantly worried about their future.  Your child, though, may not know the difference between life before and after their diagnosis and might not remember this moment later with the same emotional weight you do.  Your child is the same incredible child you’ve always known and loved — you just happen to have a name for the symptoms you’ve observed in them.  Loving your child the same way you always have can help you process that a disability or chronic illness likely won’t change who your child is and may also quell some of your fears about what’s to come in your child’s medical life. 2. You can share your child’s diagnosis on your own time. You may feel pressure to immediately open up to your loved ones about your child’s diagnosis, even if you don’t yet feel ready to share.  On the contrary, you may feel like you shouldn’t share your child’s diagnosis and might worry about how and when others will find out.  As a parent to a child with a new diagnosis, you have every right to share about your child’s medical condition on your own time.  If you need to grieve your child’s diagnosis before you share or feel like you’re just not ready, take your time.  If you’d prefer that others know about your child’s health immediately, update your loved ones as soon as you want.  How and when you choose to share about your child’s chronic condition is your decision and no one else’s — and there’s no wrong way to go about it. 3. You will figure out how to adjust to the realities of a new diagnosis. A new diagnosis for your child can come with a myriad of extra responsibilities and commitments, and at first, you may wonder how you’ll juggle it all.  Learning new terminology at specialist appointments, taking your child in for therapies, and researching procedures that could help your child may leave you feeling completely overwhelmed and afraid that you aren’t a good enough parent to your child.  With time, though, you will likely adjust to the realities of parenting a child with a disability, feel more comfortable in medical settings, and even feel compelled to help other parents who are navigating the same emotions you’re feeling now.  The raw emotions you feel today won’t last forever, and you’ll settle into this new life as time goes on. 4. Even if your loved ones pull away, you’ll find others who will stay. As you begin to share news of your child’s health condition with family and friends, you may find that some of your loved ones feel hesitant or distant when you need them the most.  You may wonder if you did anything “wrong” to push them away or if your relationships will ever feel as natural as they did before your child’s diagnosis.  If you notice that your family or friends don’t seem to understand your life as a parent of a child with a disability, try not to give up hope.  The people who will stay by your side on their journey will likely genuinely want to understand your child’s condition and needs, and they may even become closer friends than ever.  You may also find plenty of other parents of children with disabilities who will understand your rapidly changing life and the challenges you and your child face — and those are the bonds that can last a lifetime. 5. Your child will continue to amaze you. After you receive your child’s diagnosis, you may feel like all of your future hopes and dreams for your child are dashed, but even if you need to adjust some of your goals for your child, your child is no less incredible.  Parenting a child with a disability may help you notice milestones other parents may not fully appreciate, and those moments might just remind you how incredible your child is.  Even if you have to put some parenting dreams on hold because of your child’s condition, your child may constantly surprise you, surpass expectations and show you just how capable they’ve always been.  Your child’s diagnosis may set them on a new life trajectory, but they will still give you new reasons to celebrate how amazing they are every day.

I was at a baby shower recently. When asked whether she hoped for a boy or a girl, the young mother-to-be put her hand protectively on her belly and replied serenely, “All that matters is the baby is healthy.” At which point all heads turned in my direction and then quickly looked away. Yes, my child has a rare disease. It is genetic. No, we didn’t know we were carriers. It is not contagious. And, yes, I did notice right when things got awkward. One thing I have learned in the years since I was young, hopeful and pregnant for the first time, is when it comes to being a mother, health really doesn’t matter all that much. I love my daughter fiercely, neither more nor less than I love her “typically” developing sibling. Health, like gender, is just part of her individual makeup. It might surprise my shower-going friends to learn that I don’t mourn the loss of the healthy child I was naively anticipating when I was pregnant. To me, there is no sense in grieving a fantasy, especially when the reality is wonderful in its own way. My daughter is perfect, just as she is. Don’t misunderstand. I am very, very sad sometimes — sad my daughter has had to face daunting medical odds, physical pain, hours of procedures and days in the hospital. Do I wish she didn’t have to endure that? Of course I do. But from the first moment I held her, I knew there was nothing to be gained, and much to be lost by wishing she was different. In spite of, or maybe because of, her medical issues, my daughter is amazingly, unabashedly, uniquely herself. It’s hard to explain how much she adds to my life and the lives of those who are fortunate enough to get to know her. She can be insightful, giving and demanding, childishly innocent and wickedly funny. She is a human being, not a diagnosis. She draws out in me a mother I didn’t know I could be. She makes me a better person – not because of her disease, but because of exactly who she is and everything she adds to the life of our family. So by all means, my sweet young friend, wish and hope and pray for health of the precious life growing inside of you. But don’t look away from me out of pity. I am not embarrassed by my daughter’s medical condition, and there is no need for you to spare my feelings. I wish health upon your baby as well. My experiences have taught me sometimes things do turn out differently than we expect. And if that happens, know joy can be found there, too. Your baby will be perfect, and you will love that little person, him or her, healthy or unhealthy. You will love that child with every ounce of your soul. And that truly is all that matters. The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

Don’t you just love when a medical professional spends seven minutes with your child in an unfamiliar office and suddenly knows everything about them?  Me too. (Enter sarcasm.) No education, degree, continuing education or journal article could have made me the kind of clinician I am today like Hank and Gus have. Hank and Gus are not my crotchety neighbor men who sit on the front porch and kill flies with a can of Raid.  They are my kids. I don’t give birth to babies; I give birth to old men. There was a time in my life I knew everything about your child. I knew what they should be playing with, who should be working with them, what they should be eating and how much they should be sleeping. I know none of these things anymore. I know how to help them talk and eat, and I know how to help you help them do these things. That is all I know. Let’s get real here. My own kids never sleep. Hank prefers to play with fly swatters, and Gus’s favorite toy is a tiny fake bale of hay.  Hank had cereal and fruit snacks for breakfast. Gus had breast milk and chased it with some residual chocolate on the remote. I am in no place to tell you what you should be doing with your own kid. I was only qualified to do that before I had kids. I was recently helping out in a clinic with an amazing developmental pediatrician. He was calm and patient, warm and kind. I was quite sure he knew the secrets of the universe. We finished the evaluation and met with the parents. I was ready. I had my legal pad and my pen. I was going to write down everything he said. He was surely going to tell these parents exactly how to raise a child. I couldn’t wait. He was going to change my life. And what did he tell them? He said, “I was a general pediatrician before I became a developmental pediatrician. I have been practicing for a very long time. However, you are the only person with a Ph.D. in your child.” What? No. I needed more. I needed him to hand me the key to perfect parenting. He was supposed to tell this family exactly how to raise a child and I was going to write down everything he said. Turns out he gave me (and those parents) something more. He gave me a moment away from the panic of “I have no idea what I’m doing.” He validated my feeling that I know more about my child than any pediatrician, therapist or educator. Don’t get me wrong. I need those people to guide me in the development of my children. However, at the end of the day I am the one with the Ph.D. in Hank and Gus. If your pediatrician, educator, daycare provider or therapist thinks they know your child better than you do – fire them. If you are looking for someone who knows everything about raising a child, well I have a brother without kids. I can get you his number. The Mighty is asking the following: What’s the best thing a medical professional has said to you related to your (or a loved one’s) disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

I remember the day I finally got the answers I needed about my 4-year-old son’s behavior. April 1, 2016. That day I took him to have his evaluation done, thinking he would be diagnosed with attention-deficit/hyperactivity disorder (ADHD), like his 9-year-old sister. As I gave his therapist all the information she needed, I saw a light turn on in her head. After doing a few tests of his response to touch, she turned to me and said, “He does not have ADHD. He has sensory processing disorder (SPD), and it looks like he might be on the autism spectrum.” My head was spinning. Surely I would have noticed if my son had these diagnoses, right? She explained to me how sensory disorders often look like symptoms of ADHD. My mind jumped back to the day I made the appointment. I was checking my 9-year-old out of school, my son and my 2-year-old in tow. My son started to cry and throw a fit while we stood in the bricked hallway of the school. The secretary came out of the office and instructed me to wait outside, since my child was being a disruption. I walked outside with my head down to wait. After this three-hour evaluation and the diagnoses, I went home and straight to Google to research what sensory disorders are all about. Within 30 minutes, my son’s entire life made sense to me. All four years of it — the reason why he rarely slept, or why he likes to wears his Halloween spandex costume or long sleeve shirts. That day at the school made sense. The noises in the hallway bouncing off the bricks and making it sound distorted had hurt my son and caused him to have a meltdown. He changes his clothes a thousand times a day. It made sense! Finally, I knew how to help my child. I knew exactly what to watch for and what to expect. I was relieved to have answers. I was also upset and confused because all this time I thought I was parenting “wrong.” “Maybe these people whispering about my parenting skills in public places were right,” I often thought. No, it had nothing to do with bad parenting — but everything to do with being unaware of something I couldn’t see. On the Monday following that appointment, I had my own appointment for the OB/GYN. My husband couldn’t take off work, so I took my son and 2-year-old with me. I was confident in my newfound knowledge and had sensory items packed to try and make it easier. I sat down in a seat with another row of seats behind it connected at the back. My son had my phone watching YouTube with headphones in his ears to block out background noise. Then the phone froze. He could hear everyone around him and began to have a meltdown. I frantically rushed to get YouTube playing. When it did, his muscles relaxed. No major meltdown! However, an older lady sitting behind me decided to “whisper” to her daughter, “Would you like to move? I can’t stand parents who can’t control their kids.” It was loud enough for me to hear. I politely turn around and responded: ” Actually, I do have control of my kid. He has a sensory disorder and is autistic. Since the month of April is Autism awareness month, you might want to look into the statistics for both. Possibly educate yourself on what they consist of. One day you might be the person having to defend your grandchild against people’s hurtful words.” The lady got quiet and moved with a look of embarrassment on her face. For the first time, I felt proud of myself and confident with the answers I needed for so long. I can hold my head high and free my mind of any worry  I once had that I was a “bad” parent. I explain to people who make rude comments towards me or my child exactly the reason why my child is having a meltdown. I no longer feel embarrassed when I have to sit in the entrance of a store, swaddling my son, calming him from a meltdown because all the race car carts are gone and he doesn’t like the texture of the regular cart. As people walk in the store staring, I just let them stare. It makes no difference to me. I am parenting, and every child requires different parenting. Knowing is the most empowering tool a parent of a child with disabilities can have. When all the pieces fit, life is easier. 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. Check out our Submit a Story page for more about our submission guidelines.

Some people might look on as we parent kids with disabilities and think our lives must be hard.Parenting is hard. So hard. Kids don’t come with manuals and you just try to do the best you can. And if your child has a disability, it is true at times “hard” can turn into  I-have-no-idea-how-to-do-this-and-I feel-like-I’m-drowning.Maybe you’ve seen us out in public on one of the hard days — when our kids are overstimulated or when we’re frazzled to the tips.But even though there are hard days and hard moments and hard hours, they do not steer our lives. What really matters — what is most important — is love.There are beautiful and perfect moments. There is the good, there is the joy, there is the pride we feel for our kids. There is the excitement of even the smallest accomplishments. And always, always the unending love.If you ever see a child with a disability and think you could never do it, yes, yes you could do it. Because of love.So next time you see a parent of a child with a disability, rather than thinking of how hard you imagine it could be, I hope you think about what matters most. I hope you see the love. I hope you think of this: And this: Our kids, like all kids, like to play with their favorite toys. They brighten our days and make us smile. And we go on adventures together, making adaptations when necessary. We have a deep connection with our kids. And we can say “I love you” without having to use words. Our kids are involved in activities, even if those look different from the norm. We feel so much pride in their accomplishments. We hold them tight. We feel protective of our kids. They make us smile with their unique personalities and sense of humor. We walk with them hand-by-hand through life. Our families are not that different from yours. And as our children grow, so does our bond. When our children need us, we are there. And we delight in these precious kids we get to call our own. Our travel buddies. Our mischief partners. We enjoy sunny days. Laughs with dad. How precious they are when they sleep. And even as the years pass and our roles look different from other parents’, as our kids become adults, that love only grows. And our grown kids sometimes take care of us, too. Sometimes we ride roller coasters. We are smitten by our beautiful kids. We splash in love. We take family selfies. We ride planes and travel far. We are happy recipients of kisses. And we love s’mores. We are family. We are together. We are not so different from you. This is life.Full.Rich.Beautiful.Ours.Overflowing with love. Thank you to our Mighty community for these photo submissions.

I knew eventually I would find myself asking fellow parents who have been in our shoes this very question. However, I never thought it would be so soon. My son, Carter, is currently 9 years old and he’s pretty medically complex. Over the past year and a half since COVID started, Carter has been in home hospital. This is a program districts in California offer for children who may be immune-suppressed or their doctor believes they are too high-risk to be attending in-person school. Legally, as required by the state, we are to get a teacher to come to our home five hours a week and the allotted therapy time in his IEP. When we first came to the district, Carter was 3 years old and accepted into their special day class under other health impairment (OHI) due to chronic pancreatitis. At that time, we were focused on getting our boy back to an average level of speech and skills so that he might be able to join a typical class. We had no idea a new diagnosis was to come and days before his fourth birthday, we were shocked by receiving the diagnosis of Sanfilippo syndrome. This new diagnosis gave us answers to exactly why he had a speech delay, developmental delay, along with so many other things. We quickly realized the goals we had set out for him were unrealistic and geared up to make achievable goals. Home hospital is excellent theoretically. We heard of it when the district first suggested the possibility when Carter had a new central line placed around four and a half. As you can imagine, the Sanfilippo diagnosis completely turned our world upside down, and it opened our eyes to the fact that something we won’t have with our son is a lot of time. We were tempted to put him on home hospital then; however, socializing with his peers was more important. We had to take a step back and realize although we would love nothing but more time with him at home, it was best to send him to school. Fast forward to today – we’ve officially been on home hospital since August 2020. Unfortunately, the district could not bring someone into our home for in-person services until this summer; four months after they brought all students back on campus, to be exact. Over the last year and a half, Carter had about 150 words to now maybe having 20. He has lost many skills and abilities, and we’ll never know if it was the progression of the Sanfilippo or if it’s the lack of support and services that many, if not most, children with disabilities are seeing due to COVID. If I had to guess, though, I would say it was the second. In last year’s IEP, I had a complete breakdown. I remember begging the district for help, assistance, ideas, anything; I just needed help! At that time, they had already brought his special day class back on campus for in-person learning. I was met with — nothing we can do at this time but only offer virtual therapy. I remember sobbing as I abruptly left the meeting shouting, “You say no child left behind, what about my son? That’s exactly what you’re doing. You’re leaving him behind!” Of course, as any parent would, I fought. I fought for my son and his rights. I fought for them to do the right thing, not just to let him slip under the radar. This was not fair by any means, and this was not the first time I would go head to head with the district over it. Speaking with other parents I know we’re going though the same thing the one thing we all collectively saw was a lack of support and services for our children. The people in charge say, “don’t worry we’ll make it up later in the school year.”  But what about those children who will not be able to make it up?  What about those children who have already lost and will not be able to regain those skills? Fast forward to today; we’re still waiting on getting a teacher for him to come into our home for the five hours a week. We’ve finally scheduled speech and occupational therapy weekly, only a month after school has started. Our goals have drastically changed from socializing with peers and gaining skills to now focusing on maintaining his current skills and abilities. However, if I am honest, he’s not getting much, if anything, from our therapy sessions from the district. In a typical session, I am blocking his behaviors for the entire session, so the therapists do not get hurt and end with them just giving me ideas on things to work on throughout the week, which I am grateful for, but it’s not the same. And if I am candid, I think I am really just keeping therapy going, so he is not just seeing and socializing with our family all the time. Knowing that we don’t have a lot of time with Carter, I want to pull him from school to make as many memories with him as possible. I know I can find other ways to incorporate therapies and keep him stimulated and moving, but I also know that’s also not fair to him. I am not a a certified therapists, just a mom. I am just tired and at a loss. I fought for something he deserves, something he needs, and now, I am not sure if he’d even benefit from it at all because there has been such a significant regression in various areas. And with that, I am left constantly asking myself, when do you know it’s time to pull your child from school?