Today’s story of perseverance comes from Nicole Ure and her family’s experience having a child with autism.
Mom to Jonas (14 in July), Alyvia (11 going on 16), Anderson (8 in July), Charlee Kayt (4)
Briefly describe your experience raising a neurodivergent child, and how it might differ from raising a neurotypical child, and the struggles that they have experienced during their life.
Raising a neurodivergent child is a lot like the most thrilling, most terrifying roller coaster ride you've ever been on. And you want to be on it! It's so much fun-but also SO SO terrifying! In a lot of ways it's not much different than raising a neurotypical child. Neither of them come with an instruction manual! The biggest difference is that I am teaching him the same things over and over and over again. Everyday, I give Jonas prompts or reminders of what comes next, where we are going, who is coming to help him that day, what we are eating, take a shower, brush your teeth. Almost everything Jonas does requires a prompt and a brief explanation. In most cases I can't say-"get ready for school". I have to give one step instructions: make your bed with your blankets folded and your bedtime toys neat. Get dressed-with an explanation about the weather and a plea to wear clothing that is weather appropriate. Brush your teeth for 2 minutes (we have timers all over our house) be sure to brush the upstairs teeth and the downstairs teeth and front and back. It's a lot like having a toddler! A really freakishly strong, taller than me, voice is dropping, toddler. It requires a lot of patience, perseverance, and asking for forgiveness.
Who or what helped keep you grounded when you initially found out about the diagnosis? What about currently?
For sure my husband, Devin, has been the voice of reason and the level-headed parent in our journey. I am the one that wants to fight the bullies and set the people straight. I was devastated by Jonas's diagnosis. All of my hopes and dreams for him were shattered in one phrase: Autism Spectrum Disorder. I was SO mad at Jonas. I wanted him to just--pay attention! Focus! "C'mon you can beat this" kind of thing. My husband wisely said, "Babe, this doesn't change everything. Jonas is still our son. We still love him. We still get to teach him. It looks different-but there is so much hope ahead. So what if he is autistic?" It was about this time that I realized that what I was mourning were MY hopes and dreams for Jonas and not his own.
Having Jonas first has been a great teaching tool-in so many ways-but especially when it comes to letting kids be themselves. It's not my job to tell them who they are and what they like. It's my job to support them in those choices. It is not "normal" to take your 14 year old to visit a toy train museum-but if it makes him happy- why should I care if it's "normal" or not. This was a new concept for me. I grew up thinking it was appropriate and expected that I do what others told me was best for me. No one really said that to me specifically, but I feel it was implied. The idea of loving kids for who and what they were felt so refreshing! That's not to say kids don't need correcting, or a gentle nudge here and there.
We, as parents, see things they don't and we should point out their strengths to them. We should suggest things that push them a little to learn something new and develop a new talent or skill. I learned this from Jonas. He has a lot of anxiety-which doesn't present itself like it would in a neurotypical kid. Jonas just refuses to try new things and it comes from fear of failure. I have learned that what he (and all kids!) need is a cheerleader! A "you've got this, I believe in you, I am right here if you need me" kind of person. I love being that for my kids! I have learned so much by watching them learn-instead of forcing them to learn. There are great miracles where there is love and I have seen this as I have loved them for who they are. Devin is so, so great at doing this for our kids. I’m learning from him.
How did you balance the needs of your family and yourself while still allowing room for coping with this diagnosis?
I struggle with the concept of "self care". It looks pretty basic for me and I have misjudged the way that other women in my circles take time for themselves. I have a lot of fear and anxiety about leaving Jonas with other people, so I am not always good at recognizing when I need a time out. When Anderson was born, Jonas was in the thick of a period of night wakings. It was the hardest year for me! I was living on little to no sleep, trying to navigate autism, motherhood, do my church calling-and help my husband do his...it was so hard! I remember one time my mom flew out to visit me because she was so worried about my mental health.
Over the years, I have learned that taking time for yourself is important. It looks different for everyone. I am a better wife and mother if I just take a little time away. It doesn't always look like a day at the spa, or a shopping spree (although those things are great!). Sometimes it looks like a hot bath with the door locked, or taking the dog for a walk-alone. It has taken me a lot of years to see that the kids will be fine with a babysitter. The kids will adapt to how someone else makes their mac-and-cheese, or the way they read the bedtime stories.
What advice would you give to parents in a similar situation (or really any parent who is dealing with uncertain challenges)?
The best advice for any parent is to build a village of good people around you and then call on them for help. No new parent (or old one for that matter) knows all the answers. It isn't possible! Kids are all different. Some are just like us and others we cannot relate to or understand at all. I learned from a wise, older-than-me mom that there are just some things kids don't want to learn from their parents.
I have learned to look for talents and skills of other parents, and then ask them to share that skill with my child. For example: Our daughter really wanted to sew a blanket. I have very basic sewing skills. This is probably all she needed for this task, but I knew that she would learn better from someone else. So, I called a friend that has far more skills in sewing than I do and asked if she would help. She was so gracious and so kind to give her time to our daughter. She also gave my child other skills she will need: learning from another adult, skills of communicating with an adult when your mom or dad isn't there with you to facilitate the conversation, they formed a bond and friendship that I know will be a benefit in the years to come, she was encouraging and helpful, and offered an unbiased opinion.
The truth is we need other people to help us raise our children. It will surprise you what you can tell your kids time and time again and it doesn’t seem to sink in-but if the neighbor two doors down says it.....then it is the truth! And that's ok by me. I don't have to be the only one who teaches them all the things, because I know that I can't. Our children are loved by so many and in a lot of cases that is because we have reached out and asked them to be part of our village.
What has this experience taught you about resilience?
I don't know that I consider myself resilient. I feel like I fail more than I succeed-but I don’t give up. I pause a lot, but I don’t quit. Parenting would be really easy to just toss in the towel and call it all a loss-and sometimes you have to do that at the end of a long day. “Sure, have ice cream for dinner!” I think Autism has taught me about resilience because Jonas doesn’t give up. Sure, he resists, argues, drags his feet and often puts up a fight-but he also pushes through. Something so awesome about Jonas is he self-soothes through verbally coaching himself out loud. “You can do this, Jonas” or “you can handle this” are things he repeats to himself often. While he lacks confidence-he isn’t a quitter and that’s so inspirational to me!
What is something you wish others understood about having a neurodivergent child?
In general the world would benefit from society being more understanding and patient with one another-neurodivergent or not. Kids like Jonas want to be loved just like their typical peers. They just don’t seek it out or ask for it in the same ways so it can be tricky to see that actually they do want to be loved and accepted. They may not like physical touch or attention drawn to them. It may be that they want it on their own terms too. Sometimes Jonas asks for a hug or asks to squeeze my hand. Other times he acts like touching him will melt his skin off. I live my life largely on his terms. I’ve learned that pushing myself into his bubble isn’t effective. Now-he has no boundaries so he will push himself into anyones bubble.
I think kindness goes a long way. Be kind. Teach your kids to be kind. Being neurodivergent is much more prevalent these days. It’s our job as parents to help our kids see that every child wants to be loved and accepted by other people. For example, it drives me crazy when Jonas asks a stranger their name and they just stare at him. I don’t care if you tell him your name is Spider-Man-just answer the question. Just show some compassion and kindness. We need more acceptance and not just tolerance in the world. Accepting someone simply means you love them for who they are. This doesn’t mean you won’t disagree with them, or maybe get annoyed by them at times-it just means you’ll love them the best way you can.
I also wish people would stay in their lane. I’m doing the best I can and you (likely) have no idea what it’s like to be me or my child. If you have to say something to me when my child is melting down in Target, let it be uplifting and encouraging. I don’t need your dirty looks, judgemental expressions, or whispering as you walk by me. Truly, if you can’t say something nice, don’t say anything at all!
Update on your kids (you may want to include details about how having a neurodivergent child shapes your life or even how it affects parenting during a pandemic).
These days Jonas is preparing for his freshman year of highschool next year. I’m dying at this-but also so excited for him. Our high school curriculum for him looks a lot more like life skills and less academia. I think we will see him soar with confidence and watch the young man inside slowly emerge from the cocoon that is autism. I know it will be hard-awful, at times, but Jonas always surprises us. Always!
Alyvia is thriving as a pre-teen. She longs to have a busy social calendar and an endless wardrobe. She’s our right hand at home and while we walk the line of “too much responsibility” very finely-she always steps up to whatever is asked. Jonas prefers her over the other siblings and usually listens to her gentle nudges. She’s an amazing student, plays the violin, and much to my chagrin-does her own hair these days.
Anderson is our family clown. He likes to keep everyone laughing. He loves everything baseball and knows way more about the Dodgers than I ever will. He’s on the fast track to becoming a lawyer-at least that’s what I tell myself about all the arguing he likes to do. Anderson doesn’t always respect Jonas’s boundaries and thinks life isn’t fair when he looks at some of the privileges Jonas has. But, Anderson also steps up to help friends at school who struggle like Jonas. He is kind, patient, and understanding with friends who need an extra hand. Anderson has a really soft heart.
Charlee Kayt lives life as the youngest to the fullest extent. Her favorite pastimes are watching “Bluey”, playing with the neighborhood kids, tormenting our family dog, getting pizza and lemonade at Sam’s club, and stealing YouTube time from the big kids. She has excelled at preschool this year as the “class mother” according to her teacher. She loves to be silly and have fun-but also loves a good snuggle on the couch with mom or dad. Her red hair gives her a little more spit fire than we’d like sometimes-but we also recognize she can stand up for herself and she knows how to get what she wants.
As a family, we rally around each other when there are triumphs and when we hit our lows. We celebrate little things in a BIG way because We all love to be recognized for our achievements. We ask for forgiveness often. We yell, we scream, we fight, and then we laugh and start new the next day. Autism has taught us patience, love, acceptance, and to give thanks for all that we have. It’s not easy. Life isn’t easy! But the beautiful chaos is familiar and comfortable because there are miracles and love within it.