Time goes by so fast, even at Christmas. But this year the Advent season and Christmas day itself went by so slowly. Actually, we are just at the beginning of Christmas, and there’s much more to enjoy. Every day we have enjoyed celebrating the season and have spent time in reflection. On Christmas day, the kids seemed to take their time and really enjoy their presents. It was so refreshing. Normally they’re ripping through it all in a split second. In years past, it has all gone by in a flash. But time stood still for a little bit this Christmas.
I think the kids have matured a lot and are understanding what this whole time of the year is truly about. And yet, I realized this year that while our kids keep growing taller and getting older, they’re still little and young at heart. They still believe in the magic of the holiday. They’re growing up but still childlike in their excitement and joy of the season. I saw them as my babies again, with an innocence that this world can’t take away. For a minute, you think, nothing and no one could ever steal their joy. It’s like that part of my daughter’s autism that keeps her blissfully unaware of the bad and constantly seeking all the good.
That’s part of the beauty of Christmas. You forget for a moment how the world is in such turmoil right now. It brings a certain peace, joy, love and hope like no other time of the year. At a time when there is so much chaos, Christmas reminds us what our world truly needs. There are so many lessons in it. The story itself shapes the very foundation and purpose of our lives. It takes us back to a simpler time in this world. A time when the worries were a little less and all people really needed was love and the basic necessities.
I wish I could freeze this moment, this Christmas. It is such a special time for our children. I’ve seen a change in both of them, but especially our daughter. The kids seem to be realizing they don’t need all the stuff. They just want to be surrounded by people who love them. Christmas is a time when that is exactly the case. Family and friends abound and they revel in the time spent with them. Recently, they’ve discovered that some people may not value them as they should. They have felt disregarded and they know the hurt it causes. I know they have questioned why they keep holding onto their good morals and principles in the face of pain. But they have come to understand that their worth is not found in those people or in any things. Christmas reminds them of that.
It’s just the fourth day of Christmas. We still have eight days to go. I hope we can take in all the moments and just be still sometimes during the rest of the season. It’s so nice to see them feel loved and safe within these walls and in our little bubble. There’s no denying our kids will keep growing and time will keep passing. But at least this Christmas, time stood still. This Christmas, my kids still feel the love, peace, joy and hope of the season in their hearts. At least this year, my littles are still littles, and they’re still keeping all the true magic alive.
Every year I try so hard to get in the Christmas spirit and I seem to come up short. I feel like I’m fighting the raging and completely commercialized Christmas machine, just like in the aptly named book Unplug The Christmas Machine by Jo Robinson & Jean Coppock Staeheli. When I was young, Christmas was this magical time, full of joy, celebration, and peace. Things were much simpler back then. These days it’s hard to find any peace in all the chaos. I was chatting with some friends about this yesterday and I realized it something many of us moms struggle with. I know I’m not the only mom that is just sitting here, waiting for her Christmas peace to arrive.
Year after year, I’ve tried to make my life easier during the holiday season. I’ve cut back on the Christmas cards. All the shopping is mostly done online. I even let go of many of our decorations so that I wasn’t spending hours placing them ever so perfectly around our home. We’ve majorly minimized our cookie baking to one or two of our favorite kinds. Our Elf does not stack marshmallows for our hot cocoa or hide candy canes around our house. The extent of my crafting this year was wrapping some twine around a few mini bottle brush trees and calling it garland. We’ve scaled back a lot, in my opinion, as far as all the extra unnecessary things go.
And yet, I still feel like it’s all whizzing by. It’s still not peaceful. My head is still reeling with all the things I still have to do. What are those things anyway? I have no clue! I’m counting the days I have left to get the things we need for people, instead of the experiences we had hoped to gift. The tree has been up since the day after Thanksgiving and it seems like we rarely get to sit in front of it and enjoy it. It all seems like such a hassle instead of a joy. When does that peace arrive?
If I thought we were focused on just the commercial holiday of Christmas, maybe I would understand the way I’ve been feeling. But this is the Advent season and it’s the most important part of this time of year in our family. We celebrate the birth and then the coming of Christ. Our traditions all start and end with the reason for the season. All the other stuff is extra and while it can be wonderful, it’s just a lot of noise sometimes. Noise is not peaceful.
I don’t have the answers except to continue to focus on what is really important and keep teaching our kids the true meaning of Christmas. That noise of the holidays can be so loud at times, that it drowns out the real magic. We’re struggling so much trying to be the creators of the magic, that we miss it happening before our eyes. And it’s not always big and showy. It’s in the little things that we fail to see right away. It’s in the things that are getting us closer to that peaceful place and we don’t even realize it’s happening.
As I look back on the last few weeks, I can now understand what magical things have been happening. I struggled to get my kids to write letters to Santa. When they finally sat down to do it the first time, they couldn’t think of one thing they wanted. When I asked my youngest what he wanted, no lie, he said he wanted love and to be with his family. Trust me, we have our moments as a family, so I kid you not. I cannot make this stuff up. They are less centered on the gifts and that brings me joy.
Another magical moment, my kids have been saying advent prayers every night and reading their action bibles. They fight over who will add the next symbol to our Jesse tree and who will light the pink candle for the third week of Advent. Now these fights, I can deal with. The kids want to sing songs about the season. They’re asking questions about their faith and this time of year. Now that’s something worth celebrating.
I’ve also noticed that even as much as I try to be in the moment, especially this time of year, they have learned to be more present than me. They’ll ask me to read a book with them, play a board game, or watch a Christmas movie. After we’ve done some things, they will give me some time to myself, even if it’s just a few minutes. They will go off and play together, quietly and peacefully, and for a minute I’ll forget that they seriously annoy each other and myself at times. I’ve had requests to bake with them. But probably the most special moments are the ones when they have asked me to talk to them about something important to them, whether it’s something they’re excited about or something that’s weighing on their hearts. It brings me peace to know they can talk to me about anything.
It’s not going to be a perfectly peaceful Christmas. Not the kind when there’s not a care in the world and zero stress. Does that even exist? And there will be gifts, because let’s face it, everyone enjoys opening at least one. It’s become part of the cherished holiday traditions we have maintained over the years.
But it’s the advent of my Christmas peace. The Christmas I remember having as a child. There were decorations, and gifts, and a lot of those bonus blessings, but there was also a slower pace, where we were mindful of the season and kept it front and center. A time where we focused more on spending time and less on spending money. I think this crazy Christmas machine will have to die down eventually. If we work hard on raising our kids to become people who see past all the unnecessary parts of the season and more on the true spirit of the season, they will bring Christmas back to what it once was. A magical time full of joy, celebration, and peace.
It’s coming. I look forward to it.
Joyous Advent to you all and may you find the peace that the true meaning of this season brings.
I’m about to finish this book by Lysa Terkeurst called Uninvited. I love a good, faith-based, inspirational read. It’s been so wonderfully honest and witty, which is refreshing. Reading about rejection isn’t easy, but if you’ve ever experienced it first hand, you know that anything that lifts you up is a blessing. This book ties it all in biblically, and nothing is a better guide for me more than God and scripture. Seeing rejection as projection as this book mentions, really makes a difference.
Rejection is tough to deal with, whether your a child or an adult. But it has its benefits. There’s a part of the book that talks about how rejection can be helpful to people. Now, I’m a special needs mom, so you know how I feel about rejection when it comes to my child. I know she faces it daily, but by saying rejection can be helpful, I’m in no way saying it’s ok to make someone feel less than. Not ever. But hear me out on how being rejected is almost always for our greater good.
We’ve all felt left out or alone at one time or another. As a woman and a mom, I’ve been on the receiving end of mean girls and mean moms more than I care to think about. Sometimes people don’t intend to make you feel disregarded. They honestly don’t give some people a second thought or they’re just busy in their own little world. But whether rejection is purposeful or unintentional, it can be painful. But what if we thought about that pain having a purpose?
I think that rejection actually serves as a defense for us. A lot of times in life, we have no clue what’s best for us. We think we have it all planned out. The right friends? We know how to pick them. A lifetime career? We know the best job for us. That love of our life? We’re sure of the right person for us. But many times we are rejected from our own plans and sent off on a new path, one we probably wouldn’t have chose for ourselves. Who knows what type of poor choice or what future hurt that rejection saved us from.
It’s not a coincidence when our plans don’t pan out. Some people and things are just not meant for us. Rejection protects our hearts from more hurt down the line. I like to think of it as God redirecting us in the way he had planned all along. So many times in life I’ve not understood why things and people have been removed from my life. I always thought I knew better than the master planner. Now that I have a daughter who deals with rejection sometimes daily, I understand that things were and are happening for my greater good. It pains me to see her dismissed so much, but I think about how much better she is or will be for not participating in a certain activity or for not being surrounded by certain individuals.
If we look at rejection as our protector, it’s much easier to realize that everything in this life isn’t always in the plan for us. This is a concept that is way harder for an eleven year old to grasp, but an important one nonetheless. Just like failure is part of success, rejection is necessary to fully appreciate and experience complete acceptance.
I’ll have to do my best to explain to our daughter that not everything is for her or serves the path she’s on. We will have to have a talk about mom’s rejections in life and how even when I was determined to have something my way, God saw fit to remove that something out of my life and protect me from more pain. He always knows better. I will have to tell her how hard it is going to be to deal with rejection and how often she will deal with it in her life, even more because of her special needs. But if she can learn sooner than I did that rejection is really something he allows for her protection, and for her greater good, she will be able to move on from those disappointments and changes of her life’s course that much easier.
To see rejection as our protection can be hard when it hurts so much. It’s even more painful to watch your child experience it over and over again. All we can do is pray that whatever is not for our betterment will be removed from our paths. We can pray for strong hearts that can withstand the heartache and the heartbreak to come. More than anything, we will keep our faith. We’ll do our best to remember and remind each other that we’re not in control, and smile through the tears, because that’s a good thing.
Inclusion is a pretty easy concept to grasp. Most people understand what the word means and yet, inclusion isn’t at the top of our society’s priority list. As a society, we’ve actually become experts on exclusion. If you’ve ever felt like you don’t belong, you understand why inclusion should be important to all of us.
This week is Inclusive Schools week, an opportunity for discussion in our schools on how to educate all students successfully. Have you heard of it? Probably not, as there is little to no mention of it. The schools are just one place where the worth and abilities of every child should be recognized. There’s a broader need for the idea of inclusion in our country that needs to be promoted across the board.
As a special needs mom, I’m quite familiar with the lack of inclusion. It’s impacted our daughter and our whole family. Yes, schools need to do a lot more, but they can’t without the support of families and communities. It starts with every single one of us. We have a responsibility as a community to help foster and sustain a sense of belonging for all people. We’re not lacking in an example of how to treat all people with equal respect and yet, we still struggle doing what’s right for all.
I’ve been thinking a lot during this Advent season about how God is always inviting us in and how he never excludes anyone. He never turns anyone away. Why would we? We’ve all excluded or ignored someone at one point or another. At some point, we’ve all felt like we don’t belong. But if we could all remember to commit to decency for our fellow humans, no one would ever have to feel uninvited. We all have different beliefs and backgrounds, but we can agree that avoiding others who are different or treating them less than ourselves is not inclusion of all people. Valuing and respecting our fellow man and woman is where inclusions really starts.
Let’s stop being so good at excluding and start making including a part of who we are and everything we do. Each of us are needed to make the changes in schools and in our communities toward inclusion of all people. Everyone needs to belong.
This past weekend our daughter turned eleven. It’s so hard to believe that eleven years have gone by since she was born. Before my husband and I even met, we named her. Grace means God’s blessing. Her life has blessed our family in more ways than I could have ever imagined. She is an amazing little human.
It’s hard to explain how uniquely special Grace is. It’s not something you can understand unless you spend some time with her and really get to know her. She has this profound way of seeing the good in every person she comes across. Her personality lights up a room and her joy is contagious. She is someone we want the world to know and at the same time, we sometimes wish we could keep her safe in our family’s little bubble.
Autism is so different in every person. Grace is no exception. I’m the first to say that while we have experienced daily challenges, there is always someone who has it much harder than us. But it’s still our hard. It does not diminish the struggles she has or how difficult it can be for our whole family. But it has also made us appreciate and celebrate her achievements that much more.
Since I realized her 11th birthday was approaching, I had been thinking a lot about all of the challenges she has faced over the years and all the things we’ve learned because of her. So many times, especially recently, I’ve been told that she doesn’t look like she has autism. Many people have told me that she seems “normal” to them. Sometimes they think so much comes easy to her. They are well meaning people, but they just don’t get it.
I’m sure it makes some people more comfortable to believe she’s a typical kid, but she’s not. I guess they think autism looks a certain way, but it doesn’t. More importantly, there’s nothing abnormal about her. She is different in some really amazing ways and as the saying goes, that doesn’t make her less. They see the result of eight years of hard work, multiple therapies, social skills groups, and a long list of other supports and intervention. None of that has come easy to her or any of us.
I try to share our experiences on here in the hopes that it may help another person with autism or a family living with autism to know they’re not alone. One day I hope she shares her own story here. My hope has always been that our story will resonate with someone else and inspire them to have faith, strength, and hope when things get hard. Today, in honor of her 11th birthday, I want to share how she amazes me, despite what she has endured.
Grace has a strong faith and belief in God. This is a concept that can be hard for typical children to grasp, let alone a child on the spectrum. Yet she asks the hard questions, reads her Bible to grow her knowledge, and even did the work to receive her sacraments. She tries to model her life after her beliefs. It is inspiring and amazing to me.
She is a kind, beautiful, and sweet soul. She’s been bullied and treated like she’s invisible, and yet she still treats the people who disregard her with kindness. Even at this young age, she’s learning forgiveness which most adults can’t even grasp. That’s truly amazing.
I’ve noticed she’s gotten really good at telling jokes and picking up on humor. She has the most contagious laugh! She’s even starting to grasp the concept of sarcasm. For someone who takes most things pretty literally, that is a huge accomplishment. Many times she’s actually the object of a joke or someone makes fun of her right in front of me. Sometimes she’s still blissfully unaware of how cruel people can be, but lately she’s been becoming more aware of how people react to her. I’m amazed at how funny and how strong she is.
I always marvel at how hard she works to make friends. Not only that, but the effort she puts forth to be a good friend. This from a kid who has played alone for years. A girl who instead of having playdates and activities, was participating in social skills groups. Over the years, her hard work has made for a few amazing friends.
When she was little, we couldn’t go into a bathroom with automatic flushers and dryers without her having a total meltdown and covering her ears. These days, she holds it together and even encourages me to use the dryers instead of paper towels because it’s more green. There was a time when she had a ton of vocabulary, but couldn’t put a sentence together that wasn’t scripted from a television show. Now she’s conversing about the history of baseball, players, and their stats and schooling me on being more eco-friendly. It’s amazing how far she’s come.
It’s amazing to see her excelling in so many things. She swims regularly and is growing in her sport, when organized sports never really worked out for her. She sings on her own, sings in choirs, plays piano by ear, and is learning to play other instruments. In the art of music, she’s very talented. Yet she was turned away from dance and we were told we shouldn’t try to include her in a regular class like that. She gets straight As, earns kid of character awards, and keeps it all together day in and day out, all while being in a gifted classroom. This from a kid who struggled with reading comprehension, testing, behaviors and sensory processing.
Grace participates in clubs at school and is even a safety patrol. She went from having trouble comprehending instructions to enforcing the rules. She’s working on her Girl Scout Junior Bronze Award and constantly wants to work on more badges. Her science, math, and leadership skills earned her the opportunity to attend a special STEM program at a university this summer. A couple weeks ago she won a pageant. It has been so wonderful to see her recognized for her amazing abilities instead of ignored because of her disability.
But with all she has accomplished, we know there will still be challenges ahead. We know there will still be people that won’t expect much from her and people that will pretend she doesn’t exist. She is a big dreamer and has worked hard to build confidence in herself. Every day she pushes herself to learn more, do better, and be better. I’m in awe of all she does and I witness the hard work she puts into every part of her life.
Most importantly, she is a wonderful daughter, sister, and grand-daughter. She has learned to communicate well and express feelings. Her empathy is so touching, especially when she use to not be able to read facial expressions or emotions. She really engages with our family and has even been able to make good eye contact, when she still sometimes struggles looking people in the eye. Grace has such a big heart and loves with such a light. After a long time of never saying it, she tells us all she loves us regularly. Knowing the effort she makes in every moment she interacts with all of us, makes the love she shares with us that much more amazing.
So, yes, our Grace is amazing. Just like every person with autism, she has her challenges. None of what she has achieved over the years has come easy. Much of it has come with a lot of heartbreak and a lot of isolation from others. But it’s all helped her grow into this beautiful young girl. What is most amazing is the blessing that God bestowed on us by putting her in our lives to love and protect. She has made the world more beautiful by just being in it. That is our amazing Grace.
Happy 11th birthday sweet girl. There are no limits to what you can do. Keep dreaming big. Go out and change our world for the better. You are beautifully, wonderfully made and loved beyond words.
Thanksgiving is tomorrow and it’s always been a special time for our family. We’re grateful to be able to spend it with our parents and our children. It’s definitely a time to concentrate on everything we have to be thankful for. But putting the spotlight on being grateful for a month or for one holiday has just never been enough, especially in our little autism world. Daily gratitude has changed the focus of our family. Even in the struggles, we are aware of how blessed we are. Actually, it is how we get through the hard times.
To that end, I’ve found that finding the positive in everything has helped. There are times when you wonder what possible good can be found in an experience. Some days, it’s much harder to find than others. But if we work to find what we’re thankful for in the moment, the angst fades.
I’ve been a glass half full girl for most of my life. So over the years, I’ve tried to stay optimistic in the tough times. But sometimes life just crushes you with sadness and despair. It’s hard to have a positive outlook when you’re sitting in the dark, with no light in sight. In those times, I feel like time is the only thing that has helped.
Given some time to process things, you are eventually able to see what good has come from the experience. They say time wounds all heals, but it really does heal all wounds. There’s always a scar there that hurts from time to time, but time does have a way of giving you perspective. A lot of times the good that comes from giving yourself time, is ironically that you are more grateful for everything.
When you go through hard things, you can decide how it will shape you. I know we’ve all had struggles.
I’ve experience a lot of loss in my life and I feel like it has allowed me to approach challenges with a grateful heart. Loss has a way of doing that. Autism is a kind of loss that is hard to explain if you haven’t lived with it. But it can feel like a loss of certain hopes or dreams. It’s a loss of what you thought would be or what you had planned. Gratitude for what is and faith in His plan and not ours has got me through the darkest of times.
Over a span of more than twenty years, I’ve been keeping a gratitude journal. I started it after a really difficult time in my life. Then I stopped again when things in my life were going smoothly. Then one day I picked it up again realizing that I needed to be more cognizant of everything I had to be grateful for.
Less than a year later, my father died and at the same time I had a miscarriage. In my mind, there was absolutely nothing to be grateful for. The years following I would make a few entries, but my gratitude wasn’t always a priority. After our daughter’s diagnosis, it became hard again for me to see the good in things. Those early years I wasn’t as grateful as I should of been and that made navigating autism that much harder. I acted like it was our entire life and like my cup wasn’t overflowing with blessings. Believe me, it was.
These days I write down ten things I’m grateful for every single day. It’s amazing how coming from a place of gratitude regularly changes your outlook on things. Daily gratitude has literally crushed autism struggles for us. When you’re focused on all your blessed with, there’s no room for ungratefulness. It’s hard to be bitter when you don’t have the space for it.
We try our best to have our children focus on daily gratitude. Our hope is that one day their faith and grateful hearts will get them through life’s toughest times. It’s guaranteed that they will have them.
What we have control of is how they will deal with them and if they will always see their glass as half full.
For our daughter, we know how much she struggles and how hard she works to overcome things. It may seem easy to outsiders, but what she has accomplished has happened because of a lot of hard work and a lot of heartbreak. We remind her and ourselves how grateful we are for it all, even what most may think is just small stuff and even the really tough stuff. She has learned how important her faith and daily gratitude has been in everything she goes through and grows through.
One day our daughter will be an adult. Struggles will be a part of her life, but I hope she will live in joy and never be bitter about them. More than that, I hope she will remember how much daily gratitude can help her get through the hard times and crush those struggles.
I hope she remembers what a blessing she is and how grateful we all are for her.
A few years ago we were introduced to the Miss ARC Broward pageant, a pageant for girls with disabilities. We had no idea the impact this unique event would have on our lives. I promise you it’s the best three hours you’ll ever spend. It’s the one special pageant this world truly needs!
About ARC Broward & The Miss ARC Broward Pageant
For over 60 years, ARC Broward has been changing the community’s perspective on people with developmental disabilities and other life challenges. They have made a huge difference in how these people are accepted and included.
When they started this pageant, they found a beautiful way to celebrate girls with disabilities. It brings attention to their abilities, empowers them, and highlights all the light they bring to the world.
Our Personal Experience With The Pageant
When our daughter first participated, she was just five years old. Right from the start we could tell the pageant was going to be a wonderful and unique experience. Everyone was so welcoming to her and all the other girls. The staff and volunteers were all so kind and engaging.
Our daughter made some wonderful friends over the years. She was just two years into her autism diagnosis when she first participated. It was a time when we felt very alone as a family. The ARC Broward pageant brought us together with so many families like ours. We were all so happy to be a part of something so special.
ARC Broward has so many amazing programs and events that embrace our special needs community. We’ve been so blessed to have the opportunity for our daughter to participate in three of the pageants. This is the sixth year of the pageant and every year it gets better!
The girls all have companies that sponsor them and they have their own cheer squads for the day of the event. The volunteers are amazing and create such a sweet bond with the girls. Throughout the whole process, the staff showers the participants with wonderful experiences and generosity.
This Year’s Miss ARC Broward and Little Miss ARC Broward
This year’s pageant was held this past Sunday, November 11th, at Parker Playhouse. There were were 21 young women with disabilities (ages 6-17) that participated. Their unique talents and personalities were showcased. The girls also performed an inspirational dance together to “This is Me” from The Greatest Showman. They also did interviews with Sheli Muniz and Kristin Sanchez from NBC6 as they showed off their evening wear.
We are so happy for our friend Mahogani Gibson, who was crowned Miss ARC Broward!
Mahogani is an eighteen year old teen with an intellectual disability and she is from Coral Springs. She performed a very inspiring dance to “This is Me“. Mahogani will be advocating for girls with disabilities in her role as Miss ARC Broward. We are so excited for her and her accomplishment!
We’re also excited that our daughter Grace was crowned Miss Little ARC Broward! Grace is ten years old and has autism. She performed “A Million Dreams” from The Greatest Showman. She sang while accompanying herself on keyboard. Her Dad also had the special pleasure of accompanying her performance on guitar. It was such an amazing moment for her and our family and friends!
Photo Credit: Cate Crehan
There are so many great ways you can get involved and help. ARC Broward is a non-profit organization that runs on grants and contributions from corporations and individuals. Your donation can do so much to help fund their programs and special events like the Miss ARC Broward pageant. You can click here to support the fund for ARC Proward.
Thank You Everyone
A special thank you to Jessica Rodriguez, Lenai Martinez, and all the staff and volunteers of ARC Broward who organize and run this event. We would also like to give a special thanks to Grace’s sponsor Lighthouse Point Yacht Club and especially to Jessica Orndoff. We are so grateful for their generosity, love, and support of our girl.
Our family would also like to thank everyone that helped us raise $520 for ARC Broward. Thank you to all the staff, volunteers, and judges. Also, a big thank you to all of our family, teachers, and friends who came out Sunday night to support Grace. It was a magical night!
Make sure you keep an eye out on the ARC Broward Facebook Page for next year’s event. You don’t want to miss it! It will move you beyond words, so bring your tissues. You won’t be able to keep from smiling during the whole show. It’s the one event I wish we could give everyone a ticket to because these girls show the world what it truly means to be brave, strong, and beautiful! So make sure to grab a ticket next year for this amazing event. The light, love, and girl power these young ladies bring will forever change you for the better!
I almost regularly remind my kids that they can do anything they set their minds to. I’m mindful of how important it is to help grow their confidence. Giving them challenges is good, but I also like to help them build on their strengths.
This becomes even more important when it involves my daughter. It’s a fine line I walk every day. Do I push her a bit more because it’s something I know she could be better at or do I sit back and let her only put a small bit of effort in and just chalk it up to a lack of interest? Every day it’s a struggle to know what’s best.
Lately, it’s been causing a bit of a struggle between her and I. She decided she wanted to perform in a pageant she’s participating in. I’m always surprised when she wants to put herself into a high pressure situation, given the anxiety she deals with. That’s the kind of thing that with my anxiety, I avoid like the plague. But she has no fear of trying things.
She decided she would sing a song. Then when she realized she could play some of it on the piano, she figured out she could accompany herself. Of course, I’m all about pumping her up and telling her she can do it no matter what the idea is because I’m a strong believer that there are no limits. But in this case, not only did I know she could do it, but I’d seen her do it on multiple occasions. So I figured this would be easy street and there would be no frustrating moments or resistance on her part.
Not the case. The resistance is in full force. I’m glad I encouraged her to pursue this performance because she’s ten times more talented than I ever was on the piano and I couldn’t sing if my life depended on it. Now her nerves and anxiety are taking control and the more I push her, the more kickback I’m experiencing and the less she feels like she can do it. I still worry about pushing too hard and then having it backfire and crush her confidence.
Sometimes it’s hard to remember that I’m dealing with autism. I have the same expectations of her as I do our son. But autism doesn’t allow her to have control of a lot of things. So understandably, on the regular, she’s trying to assess control on whatever and whomever she can. That includes whether or not she wants to follow my directions, having the last word every single time, saying the opposite of whatever I say, and of course, how much she wants to practice her performance.
I’ve heard all about the tweenager thing, so I get that some amount of push back is normal at this age. She’s not a spoiled brat or badly behaved. This is way more than that. For years now I’ve been dealing with this because it is part of the disorder. Even after so many years of struggle, stress, and tears, I sometimes forget that she is operating from a place of constant anxiety. Constantly trying to control things is how she navigates a world for her that can be sensory overload and unpredictable. It can’t be easy.
We should all be encouraging with our kids and support them in their efforts. If your child is on the spectrum, it’s particularly challenging to find that space where you’re praising them and helping to build their self-esteem without pushing them too hard. We know they are not limited in what they can achieve. It could be though that their anxiety is in the driver seat. It could be that they need to feel in control of something to feel safe.
More than anything, this is a reminder to me that while I’m helping to build our daughter’s confidence, I have to always keep in mind her struggle for control. What I might think are constructive or well meaning opinions meant to help, can backfire. To her it’s a sudden change in expectations that can cause her too much pressure. That leads to frustration on both our parts.
So, if you deal with something similar, you’re not alone whether you’re the caregiver or the person with autism. As a parent, I can say that every single day is a learning experience even after all these years. I will always tell my kid she can accomplish anything she sets her mind to and works hard for, but I know that I have to allow her the chance to feel like she’s driving. That’s what will help her to grow in confidence. I have to remember that very specified praise and patience will help her to work hard from a place of peace, instead of from anxiety. It’s a healthy balance we have to find between empathy and healthy encouragement.
This Sunday is her performance, so I want to tell my daughter a few things. You have a beautiful voice and you’re a great pianist. You’ve worked hard. You can do this. Do your best. You are perfect just the way you are. Your performance will be amazing. Everyone will be cheering you on because we all know the kind of courage it takes to do this. But also because you are so talented, uniquely you, and awesome. I love you so much and I’ll be cheering the loudest my sweet girl.
Halloween has always been a kind of therapy for our child with autism. That’s not to say it’s always easy. Just like therapy, it has it’s ups and downs. Some years have been harder than others. There have been years that she struggled and other years where she had progressed through some of her challenges. Now that she’s older, it’s wonderful to see how much more comfortable she is with this holiday.
Every child on the spectrum is unique and so each has different challenges. Halloween might be great for some and extremely difficult for others. We’ve experienced a few of the good and the bad. I’m sure I’ll be leaving a lot out, but here’s a few things to keep in mind when you’re welcoming children with autism to your doorstep this evening or even having them over for party.
Please don’t turn away the older kids. This may be there first Halloween even trick or treating. It’s a great opportunity to interact with people. Also, whether they are on the spectrum or not, they could be out doing far more crazier things.
Don’t expect that all kids will be able to look at you. Eye contact can be difficult for kids with autism. Our daughter still doesn’t always look directly at a person when saying hello or meeting someone for the first time. Please don’t tell the kid to look at you either. You have no idea how painful it can be for a kid if they have autism.
Let the kids take their time. It may take a lot for some of them to come up to you or your door, nevermind all the creepy and crazy decorations they may encounter along the way. They may also need direction, so if your rule is just one piece of candy, make sure to be specific. I know with our child if there are guidelines, she needs them spelled out and likes to follow them.
There might be a child that is not verbal and can’t say Trick or Treat. If it’s their first time, they may be learning what to do for Halloween which can be a daunting social event on many levels. Just tell them how great they look and give them candy for their bag. Help make their experience the best it can be.
On the flip side, you might get a kid like ours that will talk your head off and will ask you about all the types of candy you have, the quantity allowed, and she may even add some additional and possibly unrelated information. Just smile and say Happy Halloween. It’s an exciting night. Kids can be wound up and even over stimulated. So just show patience and good cheer.
Unless you are at Halloween Horror Nights or walking through an actual haunted house, chances are you probably don’t want to be scared out of your wits (maybe that’s just me). But I know my own children don’t always like the uber creepy stuff. So don’t go out of your way to traumatize a kid that comes to your home. Music and lights can be great, but it’s also nice to keep it all lower than a roar and not completely blinding, especially indoors.
Remember to be accepting of all the kids and whatever they’re wearing. You have no idea what it may have taken for that child to even put a costume on. The tags and material might be driving them batty and parts of the costume may end up being carried instead of worn. Maybe they don’t have a costume at all and that’s ok too. The important thing is to be welcoming to all the kids. Everyone will look different and everyone will be capable of different things.
It’s nice to offer a non-candy treat, especially for those who have allergies, but it’s also a nice option for kids who maybe don’t eat the gallon of candy they collect tonight. We end up taking all but ten pieces each to our dentist who buys it back. It doesn’t take much. The kids love fun pencils, stickers, or anything fun from the dollar store.
Don’t be surprised if some of us call it a night early. Many people like us have younger children with school the next day. If you have a kid on the spectrum, maybe they are a night owl and you’re in for a long night or maybe your kid is the one that asks to go to bed at 8pm like ours. If it’s the latter and you’re child is like ours and needs that sleep, understand if the parents have to dip out early. No one wants crabby children in the morning.
Finally, if you have to go in for the night a bit earlier and you still have candy, leave some out for the later trick or treaters. If you’re the one out and about late, make sure your kids are courteous and leave candy for others. If there are no lights on, no candy out, and it’s late, take into consideration that people might be down for the night and don’t knock or ring bells.
It’s not easy having a child with autism, but seeing them grow and progress is so rewarding. On Halloween, they really get a great opportunity to be exposed to a lot of new things and work on their social skills. I know it can be stressful for parents, but it is worth getting out there and at least giving it a try. It’s good practice for the kids and over the years, it’s possible for them to make great strides socially.
So Treat Halloween like therapy for your kid. Heck, it might even be therapeutic for you if you just chill and stay positive. You might be surprised how you and your kid could benefit by giving this holiday a whirl. Yes, it could get Tricky at times, but the real Treat will be seeing your child conquer their fears and maybe overcome challenges. Nothing could be sweeter.
I’ve prayed for peace a lot. When you have anxiety, you learn how to manage it and be more calm. Prayer is my favorite and most regularly used tool. If you’re a mom of a child with autism, I will pray for your peace too.
When I pray, I usually spend a lot of time in gratitude. It’s hard to worry about anything when you are being thankful for the present. If you’re in conflict with anything or anyone, you can’t be at peace. Anger is not a peaceful place to be. But sometimes, we’ve reached our limit and we’re angry. That was me yesterday and it got me thinking about all the things us autism moms go through and all the places we need to pray for peace.
You spend your days organizing IEPs, scheduling therapies, and attending day long seminars on inclusion. But you go to sleep at night wondering, will your kid ever be completely accepted and included? I get you and I will pray for your peace.
Did your child get out of school, where they are working hard to hold it all together, only to come home and have a Category 5 meltdown on you? Maybe you were perfectly happy, but then you became the target of their every frustration and it screwed up your whole day. Trust me, I’ve been there and I will pray for your peace.
Sometimes your kid is obsessing about one topic and they’re on repeat. It’s wearing on you and you can’t stay calm, no matter how hard you try. It’s impossible to ignore. The back and forth with your child gets you to a stress level they say is equal to that of someone in combat. You break and yell because you want it all to stop. I was there yesterday, and I stopped to pray for my peace. Today I will pray for yours.
There are days when your child is doing pretty well, and you don’t feel like you even have to mention autism. Then there are days when it helps you to explain it all so you feel required to divulge the information. It’s a love hate relationship with labels sometimes. I struggle too and I will pray for your peace.
Are friendships and isolation struggles for both you and your child? Maybe today you discovered a true friend who truly gets the struggles you face and maybe today you discovered a person masquerading as a friend. Do you dream of the day when your kid has that one true, real friend and not just the ones that feel obliged to be friendly because of your kid’s autism? I’ve been where you are many times and I will pray for your peace.
No matter what level of support your kid needs, assumptions are always made about their capabilities. When they’re struggling, most don’t understand. If they are progressing in some area or doing well, no one but you knows the hard work, heartache and tears it took to get them to that point. Chances are, at one point or another, someone has said something ignorant about your child’s abilities or struggles and you’ve probably wanted to tell them a thing or two. I will pray for your peace in that conversation.
Does the future keep you up at night because you don’t know how your kid will survive when you’re gone? Who will take care of them? Then there is the guilt you feel about their sibling and the burden it implies for them. I know how hard it is sometimes to have faith when you fear what will happen in their world, when as a parent, you aren’t here to fight for them. I don’t know how we find peace in this, but I will pray for yours and mine.
Autism mom, I don’t have any of the answers. I don’t know if it will get harder or better. I wish I could say that over the years it will get easier. It just changes. The challenges, the worries, the interactions, and the inevitable loneliness you will feel on this road is a constant. But there also real joys and amazing things to celebrate, that much of the rest of the world will take for granted. The one thing I know is that prayer works. In those moments when you feel like you don’t know how you can keep on the way things are, take a moment to be still and pray for your peace to get through it all. I will pray for your peace and I hope you will pray for mine too. If you need someone to pray with you, I’m here.