I saw this article on Facebook from Huffington Post Parents. As I read it, I smiled at the many things that were spot on. Sometimes a perfect stranger can explain to you exactly how you are feeling, what you’re thinking, and how you’ve been acting. I hope this article helps some of my devoted readers who are raising children with special needs — and those who aren’t.
As you read this, see if anything comes to mind that you can do to help a friend or parent in need. It doesn’t have to be a grand jester — a simple phone call, text, or email saying that you’re thinking of them; a date for coffee; or even sharing a cocktail on the front step at the end of the day.
Maria Lin has written for publications such as Real Simple, New York magazine, Time Out New York, and has appeared in The Washington Post, ABC News, Fox Business News, The Wall Street Journal, and the BBC. She is the co-founder of cult lifestyle site UrbanDaddy, and is currently an associate creative director of writing for Apple. She graduated from Swarthmore College and Berkeley Law School, and attended the Columbia Graduate School of Journalism. She lives in Northern California with her son. www.marialin.com
7 Things You Don’t Know About A Special Needs Parent
About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum’s daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We’ve been in and out of hospitals and doctors’ offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don’t know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don’t share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding. I don’t claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I’ve missed any, please leave a comment below.
1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I’ve gotten a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors’ visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
2. I am jealous. It’s a hard one for me to come out and say, but it’s true. When I see a 1-year-old baby do what my son can’t at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend’s kids. Sometimes, I just mourn inside for Jacob, “It’s not fair.” Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob’s rare condition. It sounds petty, and it doesn’t diminish all my joy and pride in my son’s accomplishments. But often it’s very hard for me to be around typical kids with him. Which leads me to the next point…
3. I feel alone. It’s lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it’s so not what my world looks like. It’s been a sanity saver to connect with other special needs moms, with whom it’s not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob’s unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.
4. I am scared. I worry that I’m not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob’s future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being “different” in what’s often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob’s disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob’s future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.
5. I wish you would stop saying, “retarded,” “short bus,” “as long as it’s healthy… “ I know people usually don’t mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It’s disrespectful and hurtful to those who love and raise the kids you’re mocking (not to mention the kids themselves). As for the last comment, “as long as it’s healthy,” I hear a lot of pregnant women say this. Don’t get me wrong, I understand and share their wishes for healthy babies in every birth, but it’s become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. “And what if it’s not healthy?” I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
6. I am human. I have been challenged and pushed beyond my limits in raising my son. I’ve grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I’m just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it’s nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it’s because it can be hard to talk about my son. Which leads me to the final point…
7. I want to talk about my son/It’s hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I’m having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don’t often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn’t mean that I don’t want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like “How did Jacob like the zoo?” or “How’s Jacob’s sign language coming along?” rather than a more generalized “How’s Jacob?” which can make me feel so overwhelmed that I usually just respond, “Good.” Starting with the small things gives me a chance to start sharing. And if I’m not sharing, don’t think that there isn’t a lot going on underneath, or that I don’t want to.
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I’d come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary “performance” difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is — no matter how they stack up against what “should be.” Raising a special needs child shatters all the “should bes” that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don’t know about a special needs parent… I may have it tough, but in many ways I feel really blessed.
If you’ve read our book, you know that Tony is famous in our house for creating his own expressions and language.
He’s been at the top of his game lately.
He’s had a cough for a few days now and I’m pumping him with vitamins and minerals. He’s not always thrilled with swallowing pills, but he always does it anyway with a few choice words included. He knows they make him “stronger and wiser”, as I always tell him.
So here’s how our conversation went last night:
“Bad cough”, Tony proclaimed out of the blue.
“I know, honey. But it’s getting better, right? ” I answer.
“I need orange!” he shouts as if I’m on the other side of the house. Which I’m not. I’m standing a couple of inches from him. Literally.
“I’ll get you some more Activate-C, honey,” I respond with a huge smile on my face, referring to a natural immune system support drink, which he just started drinking this week.
–> side note: This is the first time he’s EVER drank something other than water since he was about 4 years old. We stopped all juices – especially apple – and milk when we learned he was highly allergic to mold and dairy at the time. His immune system was completely broken down back then. Once we stopped, we couldn’t get him to start again due to many things, including sensory issues. No bubbled water or drinks ever. No milk. No juice. He’s only drank water since. Lots and lots of water. And lots of vitamins and minerals. And he’s very healthy now and strong as an ox. BUT this is an orange flavor and he’s drinking it!! BREAKTHROUGH!
How does your nose feel?” I answer.
“Not working,” he replies.
(Pause for a giggle.) He’s so literal and it just cracks me up sometimes.
“Oh… I hate it when the nose isn’t working too. It will start working again soon. I promise”, I said.
“I need an iPhone!” he shouts. “The head hurts!”
An iPhone? What? OH!!! (Pause again for an even louder giggle)
“You need an ibuprofen?” I ask.
“YES!” he shouts. “The head hurts! … but how ’bout iPhone?”
Asking now to use my phone as a mini computer, since the subject came up. Stay with us. Our mini conversations jump all over the place.
“Let’s concentrate on getting you better. You need to rest,” I suggest.
“Fine!” he shouts as he plops down on his bed. “How about warm rub?”
“I’ll be right in with the Pain-a-Trate”, I answered. It’s a pain relieving cream that also helps with stuffy noses and chest congestion — a safer alternative to Vicks.
Oh, Toneman! Keep ’em coming. Keep those mini conversations coming. I adore them!
–> another side note: Did I mention how long we’ve waited for back and forth conversation? Oh yeah. I did. Twenty years. You can see why I went to bed with a huge smile on my face. 🙂
Carry on —- and remember to keep the faith,
I’ve been waiting to write about this song for some time now. Paroosing the internet, as I typically do looking for inspiration on days that it’s badly needed, I happened upon this little blessing a few months ago.
Chelsea Stepp, is a 21-year old singer from Kentucky whose moving song inspired by her sister with autism became a huge hit on social media late last fall.
“Beautiful Blessing” is inspired by her sister Cammi – who at 13 continues to face major challenges with behavior, social development and communication but also has demonstrated a savant ability of knowing the day of the week of any date past, present or future – the song could be about “anybody with a disability who can’t exactly speak for themselves.”
She said she tried to convey how she thinks Cammi feels about her struggles in the lyrics and the chorus, “Beautiful Blessing, Beautiful Curse” because she knew that if she did, other people could relate to the song. “Just like the song says, it’s a blessing and a curse at the same time for Cammi and for the family as a whole because you have those moments where it’s really a struggle but just having her and being able to help her is the blessing of it all.”
Click the link below in red and watch. It’s well worth a few minutes of your time.
You mean what you say, just can’t say what you mean Bottled up inside your head, and bursting at the seams Trapped inside a world that’s all your own Your thoughts roll in like waves crashing on the shore Time is ticking, time is ticking, time to pace the floor Back and fourth to find the place where you belong
Beautiful blessing, beautiful curse Things could be better, but things could be worse Give me your heaven, give me your hurt Beautiful blessing, beautiful curse
Act like I understand, but if I told the truth I couldn’t stand as tall if I were in your shoes Everyone needs a hero, and here you are
Beautiful blessing, beautiful curse Things could be better, but things could be worse Give me your heaven, give me your hurt Beautiful blessing, beautiful curse
It’s all those things you’ve never had you’ll never miss But I would give anything if I could change this
Beautiful blessing, beautiful curse Things could be better, but things could be worse Give me your heaven, give me your hurt Beautiful blessing, beautiful curse Beautiful blessing, beautiful curse
Stepp’s album is available for download on Amazon and iTunes. You can also visit Stepp’s Facebook page to request a copy of the album at www.facebook.com/ChelseaSteppMusic.
Faith heals all wounds.
Keeping the faith,
What a beautiful story. Although they are much higher functioning than our Tony, it’s wonderful to see all the possibilities.
Please click the link below and watch a very special love story!
We will never give up hope that if Tony should ever want this… that he may someday have it.
Keep the faith,
I’ve been waiting to update you all on Tony’s new “internship” once he got a few days under his belt. The polar vortex has delayed things a bit. Yes, it’s been horrifically cold around here and they’ve even called off school due to wind chill’s in the negative 30’s-40’s. Seriously.
So his actual first day was last Monday. He’s delivering the mail at the district office with a job coach.
We’ve come a long way, baby!
And as you can see, he’s very proud. I think this will be a great step towards transitioning to a day program this summer. We’ve been talking a lot about graduation and what comes next. There will be a ton of changes this year. And we’re all pretty anxious, but excited at the same time.
Change is good.
Change is inevitable.
Change is changeable if things don’t work out, right?
I’m so proud of where Tony’s headed. But most importantly, I’m incredibly proud of how far he’s come.
Wishing you many blessings for a year that will make you proud.
And remember to keep the faith ~
Holiday cards are arriving daily and time is running out to get ready for Christmas. It’s been an amazing year for us as we’ve had many celebratory moments which included college graduation and of course our book release. My oldest son landed an amazing job full of opportunity; Tony has really grown and faces many changes in the coming year which I’m confident he can now handle; and my youngest son not only got his driver’s license this year, but celebrated with his high school football team by making it to the state semi playoffs. Such a fun-filled year it has been!
There’s been lots of joyful noise throughout this house. And I love it!
Christmas is a huge ordeal here (see post: Tony’s List) and we’ve been making lists, shopping, baking, wrapping presents and waiting, waiting, waiting. Tony’s handling his anxiety really good this year. So far. And I’m so proud of him. I can really see that he’s matured and is handling change so much better than in years past.
A couple of weeks ago he came home from school and handed me a letter — proud as could be! It was a letter from his “college” stating that he’d been chosen for an internship which will start after Christmas break.
We are so clever.
The program Tony attends (or “college” as we call it) is moving to a new location over break and we knew this would be a hard transition for Tony. So we had a meeting and created the next logical step: an internship, in a new building. This was at least a term he was familiar with from his older brother. He’s so close to graduating – which will happen this coming spring when he turns 21. I’m excited to see how this “internship” goes. 🙂
And then, after he turns 21, the real change happens. What’s next for him? What does that look like? A day program? We’ll tackle that when it’s time.
So anyway, as we sat down yesterday to do our annual Christmas cards, Tony was in full holiday attire including his Santa hat. Check out our Facebook page to see a picture. Click the link on the right of this page under ‘follow me’ –>
He did them all by himself. So, if you’re on our list, that explains why there’s nothing written on it. And maybe why Beau’s picture is facing front. And maybe why your envelope is empty (I hope not!! But I had more pictures left than envelopes.. so you do the math) And that’s maybe why the stamps, address labels and return address labels are all crooked.
But none of that matters.
See, this is the heart of Christmas to me. The traditions, the homemade ornaments from school, the notes and cards… And yes, the crooked labels
He was SO proud when I came back into the room (I didn’t know he had started without me, and I couldn’t interrupt because he had a clear, precise system going on) so I just watched and smiled and cheered him on.
I thought I’d share our picture with all of you too and thank you again for all of your continued support. This picture is from the wedding of Tony’s personal care attendant — and our niece, Kelly. He was SO proud that day (notice how he’s standing so tall) to be able to go to the wedding and wear his tuxedo t-shirt. It was a very hot day, but he did well. And he looked so good!! That’s why I love this picture so much. We were all laughing and holding our breath that he’d do okay at the ceremony and it turned out to be a great day. Blurry picture and all — it’s the best one of the year.
So Merry Christmas to all! And may 2014 be another year of joyful noise!
And of course, here’s the selfie of Beau on the back:
May you all experience the heart of Christmas and remember to keep the faith,
This is a copy of one of the radio interviews I did last month. I really think she asked great questions in helping me deliver the message as to why we wrote this book. Please click the link and listen:
Thank you all for helping me spread awareness in our own little way. I love that we’ve crossed the pond and even hit England — thanks to social media!
I continue to pray that this reaches the people it’s supposed to reach and that they will find familiarity, comfort, and possibly even joy as they learn and relate… realizing they are not alone on this journey.
Happy Holidays to all!
Keep the faith,
The holidays are in full swing and we are slowing turning our home in a winter wonderland. Traditions are not to be broken here — and Tony will make sure of that. The snow is falling this morning, the Christmas tree is up and the holiday music is playing throughout the house.
I always feel that the holidays bring out the best in people. Kindness is everywhere — if you look for it. People tend to stop and reflect this time of year, and I love that.
As Tony is taking year-end inventory in his room, I laugh as I pass by hearing him shuffle and stack videos, books and DVDs, making room for the new additions he’s anticipating. His new tradition is to donate some of his old “stash” so others can benefit from his treasures.
“Out with the old, in with the new”, he’s heard me say over the years. It’s just my way of sifting through his collections so he doesn’t become a full-fledged hoarder. He seems to like it. He organizes and memorizes, and when he’s ready to part with something it goes into the donation pile.
And that means a trip to the thrift store — which he loves!
So as I was reflecting this morning and Tony was upstairs shuffling and sorting, I ran across something worth sharing.
Here’s a story caught my attention out of North Richland Hills, TX. You know football is big in this family. This one hit close to home and touched my heart. Although our Tony has never played football, I’d like to believe he would have been an amazing lineman or wide receiver.
I can totally picture Tony stiff-arming players as he runs down the field, giggling.
He has incredible strength – sometimes freaky strong, like when he bent the metal on our rocking glider with his bare hands because he’d worn it out from excessive rocking. He literally bent the back rest in half and curled it down. We were baffled.
Or like when he broke my computer by smashing his fist into it. Or like when he cut through a computer power cord with only a crafting scissors.
Yeah like that. That’s strong. That’s big guy strong.
Tony likes to watch football games with his brothers — well, not with them, but at the same time as them in a separate room to control the remote and the noise level. But it’s a step in the right direction! It shows me that he’s aware of what his brothers’ interests are and that he wants to share that with them.
Either way, this is a great story about human kindness and kids accepting kids for their quirks and differences and finding a way to form a team.
Acts of kindness and acceptance are everywhere. Look for them.
“Teamwork is the secret that make common people achieve uncommon results.”
Click this link to see an example of a team going the extra mile:
As always, keep the faith,
Happy Thanksgiving everyone! I stumbled upon this video and wanted to share it with all of you. Such a cute – but important – message.
I am feeling so grateful for all the support and encouragement I’ve been getting since the book release. It’s beyond my wildest dreams and I pray this book continues to reach those who will learn from it and relate to it. Keep spreading the word.
Blessing to you all and enjoy time with family this holiday season!
Click the link below to watch video:
As always — Keep the faith,
We attended the MN Walk Now for Autism Speaks event a couple of weeks ago and I wanted to share some moments with you. Typically, large crowds, noises, humming lights, crying babies, sneezing, coughing, and, of course, loud laughter will send Tony right into a horrific meltdown.
But this time it didn’t.
This time, he did incredible. He hasn’t attended a walk since he was 15 years old – and before then very few times – when he painfully hid behind his jacket in a quiet snack section, after hiding in corners and screaming while holding his ears…
That was a difficult day.
We swore we’d never do that again. Ever.
But that was then.
This is now.
All at the Mall of America!
Morale of the story: This too shall pass.
Keep the faith!