5 Ways to Support Your Kids, From a Special Needs Sibling

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Parents of kids with special needs kids often ask my advice on how to support their typically developing kids. My younger sister has CHARGE syndrome, so sibling issues have always been a priority for me, and my work as a disability researcher has really shaped my thinking. What can parents do to help their kids understand the role of disability in their families and build healthy, positive relationships with their brothers or sisters?

Think of the strategies below as ongoing approaches you can incorporate into your everyday lives. This is a blueprint, not a checklist, that can change and grow with your family over time. And don’t forget to ask your kids if they have anything to add!

1) Listen – It sounds so simple, but even parents with the best intentions stumble on this one. Ask what’s on your child’s mind and just listen to what they say. Be mindful not to make assumptions or interpret their own feelings in terms of yours. Do not interrupt or assume they are angry/sad/confused/____ unless they use those words themselves. It is perfectly possible they don’t feel any of those things. The fastest way to shut down these important conversations is to put words into your child’s mouth. Simply ask how they feel or if anything is on their mind. And listen. If they don’t want to talk to you, don’t take it personally or force the issue. Just let them know you’re there.

2) Let Them Be Kids – Typical sibs of special needs kids often seem grown up for their age. They can seem a little too mature and articulate. Why? I’ll use myself as an example. By second grade, I’d already tagged along to countless appointments with physical therapists, speech therapists, ophthalmologists, audiologists, developmental pediatricians and special educators. In the process, I picked up a vocabulary that was unusual among my peers. I also spent lots of time with these adult professionals, I knew my family was dealing with some big issues, and I was asking my own questions about my sister. Combine all of this with the task of explaining our situation to my classmates and teachers, and I was an “expert” by age 7. But I was still 7. Forget about the idea that age is more than a number and don’t let your child’s seemingly mature nature fool you. Let your children be their number whenever they can. Embrace it.

3) Don’t Make Your Struggles Their Struggles – Sibs grow up with disability in a way that most parents don’t. Disability is typical for typically developing siblings. But did you know that parents are often the main factor in shaping how sibs experience disability in the family, regardless of diagnosis? We follow your cues, so modeling is key. Avoid the temptation to share your darker thoughts or anxieties. But my child is so mature and we need to be honest, you might be thinking. But be careful: your kids will remember any fears you share with them long after the conversation is over. Find a different outlet for yourself; let your children have their own struggles, and support them along that journey.

4) Be There, Even if They Say They Don’t Need You – Find a way to be there for your child. If they play basketball, have one parent go to each game. Call in help from relatives so you can both make it to graduation. Never listen when they say “It’s OK, you don’t have to go” to a honors ceremony. Why? Because you do have to be there if it’s at all possible. Sibs are strong and they can handle it, but they shouldn’t have to. They might not notice your absence when they’re young, but I guarantee they’ll remember it once they’re older and looking back. One of my parents was always there, and it couldn’t have been easy. I didn’t appreciate it until many years later, but I’ll never forget their presence.

5) Encourage Them to Find Themselves – Do not let your children define themselves solely by your family. Encourage them to find their own interests and explore their talents. Soccer, art, singing, band, math team – whatever! The important thing is that they find something they enjoy and can take pride in. They’ll thank you for it one day. At the same time, be sure they have opportunities to connect with other sibs. This can be through a local sib group or workshop, or an online community. No matter how much your child excels at sports or school, there might be times when he feels like nobody shares his experiences. Exposure to other sibs will reassure him that he’s part of a broader community – one made up of a diverse and talented group of brothers and sisters whose lives have been touched in similar ways.

Follow this journey on Disability Fieldnotes.

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A Doctor’s 3 Words Reassured Me When I Questioned If My Son Has Too Much Therapy

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My son’s neurologist has always been one of his greatest cheerleaders. I will never forget what she said to me that made me realize she is also one of mine.

Our son has PMM2-CDG (also known as congenital disorder of glycosylation type 1a), a rare genetic condition that affects him from his head to his toes. He has a myriad of secondary issues that are a result of his primary diagnosis.

At an appointment with his neurologist, we were catching up and going through his day. We went over his weekly private therapy schedule and early intervention home visits. She asked me what we do at home, and I proceeded to tell her all he does to increase his strength and cognition. I told her he was standing in his stander for close to an hour and a half, tolerating the Bronco for about 25 minutes, sitting in a floor sitter and holding his head up for an entire episode of “Bubble Guppies” (thank you, Nickelodeon!), wearing wrist weights for part of the day, laying on a wedge, looking at books and even turning pages, choosing objects when asked to, and so much more. I told her we would soon be heading across the country for him to have intensive therapy for four weeks where he’ll have 80 hours of therapy.

She kept writing her notes on her paper as I sighed and said, “I know it’s a lot, poor kid.”

She lifted her head and looked me right in the face and said, “No. Lucky kid.”

She continued to say how lucky he is that he is being pushed to achieve more, pushed to accomplish all that he can. She said we have a wonderful team of specialists, and we are doing an extraordinary job ensuring he achieves his full potential.

Before this conversation, I’m not sure I would have used the term “lucky” when it comes to our son. Not lucky to eventually have no cerebellum left, heart, kidney and liver abnormalities, a blood disorder, hearing loss, vision issues, extremely low muscle tone, hospitalizations from a common cold and so much more.

boy lying on stomach wearing plaid shirt
Melissa’s son

He may not have been “lucky” to inherit a rare metabolic condition, but he certainly is lucky to be ours.

That moment, those three small words, made me realize not only does his neurologist believe in him but she believes in me, too. There are so many days when I question myself as a parent of a child with special needs. There are times when I wonder if I’m doing enough and there are moments when I question if I’m doing too much. I research therapies, look for new ways to help our son with communication or strength, and vow to try no matter what.

No one is telling us he can’t or won’t, so we will continue to believe he will. And as luck would have it, he has a mom who will never, ever give up.

Follow this journey on Team Christopher S.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When Leaving My Medically Fragile Son Is Difficult

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As a mom of a very young medically fragile child, I have a hard time kissing his face and leaving for the night. I know it would be good for me, and I’m positive it will be fun. I’ve been told numerous times I need to get out more often or that I need to do things for myself. Alone. Friends tell me to “let go” a little. They tell me not to worry and that my little guy will be fine without me for a night. I realize all of this, but to tell you the truth, this is extremely hard for me. Is it hard for you, too?

I was at a birthday party and a man observed me caring for our son over the course of the party. We didn’t do anything special. I played with him on the floor, I snuggled him, I fed him — all the usual things I always do. After the party, I was told something extremely touching I’ll never forget. I kept this comment hidden in my heart for quite awhile. I tucked it away and wanted it all to myself. It moves me to tears when I say it aloud and I feel it perfectly sums up why leaving our son is difficult. The man observing me told his daughter that caring for my son is “like breathing” to me. Like breathing. It’s automatic. Natural. A part of my very existence.

woman with her young son
Melissa and her son.

I could never pinpoint exactly why I don’t particularly like to leave him. Yes, I’ll admit I’m a bit controlling. Yes, I like to make sure I know exactly what’s going on with his care. I could also give you all of the “usual” scenarios that go through my mind when I make the decision to leave. But those words from a stranger are the only way I can describe why I don’t choose to put someone else in charge and don’t “let go” very often.

I know him like no other. For almost three years, I have been deciphering his cries, reading his expressions and making decisions based off of intuition and instinct. Yes, it can be exhausting. Yes, I could “let go” a little. Yes, there may be others who are capable of caring for him — but they aren’t that.

I know him, but what you also need to understand is he knows me, too. He knows I will come to him when he needs it. He knows that no matter what, we’re in this together. When I leave him, I am leaving part of me. A part of me that is fragile. A part of me that is complicated. A part of me that is hard to understand.

It won’t always be like this. I think. I hope. I know the comments telling me to “enjoy myself” and “stop worrying, he’ll be fine” are well-meaning. I’ll try. I’ll get better at taking a deep breath and doing more for me, but right now I’m caring for the best parts of me.

Follow this journey on Team Christopher S.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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I Used to Be Upset My Son Doesn’t Have ‘Friends.’ Here’s Why I’m Not Anymore.

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black and white photo of mom in sunglasses and her son. She has her head on her son's shoulder.

My son, Ethan, doesn’t have “friends” like you or I might, and this used to upset me — but not so much anymore. This took a long time for me to come to terms with. You see, I wanted friends for Ethan, but I wasn’t sure if Ethan really cared.

Ethan is a friendly little boy. He loves nothing more than grabbing, hugging and kissing people, and just as quickly he can punch, cry, kick and bite the same people he loved on a few moments ago. These behaviors led me to become a “helicopter” mom. Yes, I’m open and proud to be that mom!

Ethan doesn’t always maintain personal space, which makes making friends with his peers difficult for all involved. Ethan gets so excited that he will shove, kick, bite and laugh due to the sensory overload of just being around people. He is happiest around people; he is the most hyped-up, overexcited kid when he’s around people, especially people his own age. Ethan stands at under four feet tall. His level of understanding is that of an 18-month-old. He is 13 but goes straight to 4- to 5-year-olds because he believes they are his peers. Every child is approachable to Ethan, which has helped me perfect my “helicopter” mom moves!

Ethan has attended two schools for children with special needs. In his first school, he made no friends. His current school is a better fit, but still no friends (as such). He has a few classmates who I am pretty sure get along with him, as I have not had many calls since he started this school regarding his behavior toward his classmates.

Ethan has no friends who call for him. Ethan has never had a friend over for a playdate, nor has Ethan gone to someone else’s house for a playdate. And that’s OK.

Ethan does, however, have a family support worker who’s been his buddy for nearly five years now. They go out once a week together for two or three hours and do whatever Ethan happens to be interested in for that week. It is a form of respite for us. Ethan loves him, and he adores him right back. It is a friendship, a very important one to all involved. He has coffee with me every week and has become a part of our little family.

Ethan also has a home nurse. We have only known her for a year, but to be honest, it feels like she has always been part of our family. Ethan absolutely loves her. She finds it hard to get her work done as he insists on sitting on her lap, kissing and hugging her. She has yet to refuse Ethan anything he asks of her. She and Ethan have a wonderful friendship.

One of my best friends lives near me and spends a great deal of time in our home. She is an amazing friend to me and my family — all three boys and my husband. Ethan adores her. She is able to read him and engage with him; she is his friend.

Ethan has two younger brothers who both play, engage and have fun with Ethan when Ethan initiates it. They also know when Ethan is close to a meltdown or a sensory overload. They know when to back away and leave Ethan to regulate himself, which he does rather well.

Ethan doesn’t have friends like you or I might, but that’s OK. Ethan has plenty of people who genuinely love him, understand him and enjoy seeing him. He has people in respite who enjoy him, people at school who laugh with him and he has us.

He will always have us.

A version of this post originally appeared on Autism Awareness.

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When You and Your Child Live in the Shadow of Her Next Doctor’s Appointment

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I was talking to my husband about how I feel like we walk around with the looming threat of surgery over us all the time.

At any appointment we have for our daughter, it seems there is always the possibility of some surgery. Eye surgery, ear tubes, tonsillectomy and adenoidectomy, frontal orbital advancement and posterior cranial vault distraction, or midface advancement distraction, or possibly a foot surgery, other bone surgeries, spine surgery, dental surgeries — and there may be more we haven’t even got to yet.

The thing is, no doctor has told us that she definitely doesn’t need a surgery — whatever the surgery of the day is. And I don’t think they ever will.

So insert the word “wait.”

Leading up to a doctor’s appointment, I find myself holding my breath and anticipating the appointment when we hear she does have to go through another surgery. And every time I hear the word “wait,” I can breathe again. We’ve bought some more time.

The funny thing about time is that it is covered by this cloud of waiting. The looming threat, always hovering over us as a reminder of a potential storm that may come. So we find ourselves living our lives in the shadow of the next doctor’s appointment. We make all our plans based on the possibility of surgery.

“Vacation? That’s funny! But what if she never gets to see the ocean?”

All our conversations, all our decisions, all our plans have something to do with doctor’s appointments and the threat of surgery.

But I realized the real threat is letting the possibility of what could happen make us put our lives on hold.

Saethre-Chotzen syndrome isn’t going away. Our daughter is likely to have doctors appointments for the next 20 years. What if we get lucky enough to hear the word “wait” at every appointment?

“Wait” is the best word we can hear at the doctor’s office. But we have to leave it there. We can’t put our life on hold as we wait for the next appointment, the next report, the next outcome.

What if we took our daughter to the beach and she still didn’t have a surgery? What if we took her to the beach and she did end up having a surgery?

What if, in the “wait,” we lived like the outcome of a day two months from now didn’t matter at all? What if we lived life today?

I think if we can figure out how to do that, then we are close to mastering this thing. And it’s hard! It’s a learning process. And I know we will have better days, better years, than others.

But I want to step out from underneath the cloud. I want to walk in the sun. My daughter deserves the sun.

girl with boy on head held by mom
Aimee and her daughter.

A version of this post first appeared on My Brave Joy.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The One Thing I Wish All Parents of Kids With Extraordinary Needs Realized

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My son’s neurologist said something to me at a recent appointment that I will never forget. We were going over everything we do to try to help him make developmental progress and increase his strength. He has weekly physical, occupational and speech therapy appointments. He has multiple pieces of equipment at home, and almost every second of playtime is a learning experience. We have been working diligently to achieve any degree of progress.

Melissa's son lying on the floor on a yellow blanket
Melissa’s son lying on the floor on a yellow blanket

Our son has PMM2-CDG (congenital disorder of glycosylation, formerly known as CDG 1a), and nearly every body system is affected by this genetic condition. He is severely developmentally delayed with low muscle tone. He will be 3 years old in April and is still trying his hardest to sit unassisted. He is fed with a feeding tube 24 hours a day and sees multiple specialists to monitor his disorder. Just when I feel like we are understanding him and making progress, something else comes up.

After going through his long list of tasks and updates, his neurologist said, “He’s climbing Mount Everest.”

I’ve been thinking about this recently, and one thing I wish all parents with children with extraordinary needs realized is that we are all climbing a mountain. Every single one of us has our very own Mount Everest. You can’t compare or say your trip up the mountain is worse or better because it’s your trip only, no one else’s.

I have ended friendships because of the comparison game or the “one up” constant battle. Can’t we all lend a hand along the journey instead of comparing? Can’t we all encourage each other to take the next step up to the summit? There will be steep slopes and there will be gentle slopes, but what is gentle to one may not be gentle to another. What is steep to me may not be steep to you. You know why? It’s my Mount Everest.

No matter what you are struggling with, it’s yours and yours only. For some of us, the trip up the mountain may take longer, and some of us may never see the view from the top. But if you’re like me, I know I won’t give up until I get there.

I know there are days when it feels like the top is too far and too hard to reach. I know there are days where we stumble and take a few steps back. There are days where we are simply at a standstill. But we’ll keep climbing because the view at the top is going to be extraordinary. So to all parents, keep climbing, and try to remember that the view at the top will be much more enjoyable holding hands. We’re all climbing.

Follow this journey on Team Christopher S.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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