A Common Denominator

Today, I was downstairs on my couch watching a movie with my husband and trying to encourage my kids to clean up their Christmas toys by placing all their new items in a box to condense the aftermath of the holidays. Our oldest daughter was attempting to open her toy box next to our TV when the lid flipped and knocked over a glass of water onto our DVR and my husbands gaming console. Our immediate reaction was, “go upstairs.” My youngest began to cry and protest she didn’t do anything while my oldest continued to apologize over and over again, as she does when she immediately realizes she made a mistake or is about to get in trouble for something. “Go upstairs!” Again, from my husband.

While I understood the accident, I also understood the brooding anger coming from my husband. I too have felt a fury deriving from something that we didn’t have much control over. At this moment, I stood by my husbands side and although I felt there should be explanation for such anger, this was not the time to play good cop. Kailyn was lying on the couch, tired and ready for a nap when all of this happened. I hurried to clean up what was left of the toys while my husband quickly checked to make sure nothing was broken. I then sat down, my daughter lied down on my lap, and I began to hum her a lullaby.

During the time I sat on our couch, I made myself think about why things like this are so frustrating for parents and their reactions equally disappointing to our children. I tried to considered all sides. Our children are just children, they will make mistakes. And no matter the care in which we enforce during specific instances, there will still be accidents because they don’t understand the “why” behind everything, and even when they do try to understand, mom and dad can only play 50 questions so long before becoming annoyed. We know they are still growing and learning to control their functions and emotions, not to mention the whole “we are only human” thing.

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As for the parents, we place things in places we know our children can get to but then we are frustrated when the outcome is what we didn’t want to happen, yet knew was possible from the beginning. Like letting my girls paint there own nails then wanting to pull my hair out because there is nail polish on my carpet/walls. Yes, it’s happened.

I realized my patience, though better, is not perfect. My anxiety, though decreased, still has its moments. My children, though growing, aren’t perfect or willing to adapt to maturity as quickly as we’d like. But even if they did, we would be sad that they weren’t little and clumsy anymore. I concluded that we are always wishing for more in the moment and missing what we should really be focusing on. We let secondary emotions control us.

The better solution may have been to tell our children, “it’s okay. They are just things,” and allowed them to continue as they were while helping them understand why we need to be careful. But as we all know, we almost always think of what we should have said or done after something has happened rather than in the moment. Sometimes we get lucky and our brains stop us from the natural reaction to a situation where we can allow ourselves some time to sort a situation, but it’s most common that we don’t. However, we have to give ourselves some credit! We could have yelled and sought punishment for their error (which was an accident) and been angry, but we chose to have them go upstairs so we could sort our thoughts and emotions better in that moment. For that, I commend my husband. There have been times where we have reacted more quickly and less ideal. We are working on that every day. I like to believe we are getting better.

I was later able to explain this to my kids. I know they don’t fully understand but I felt they still deserved an explanation. And I do think they appreciated one.

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So what does this have to do with anything autism? Many don’t understand that our family still has many of the typical struggles of any other family. It doesn’t have to be so difficult and complex all the time. Some days are just days and some are better than others. We aren’t better, we aren’t worse, we just are. I will say this though, we wouldn’t wish it any other way. We are so grateful for what we have, who we have to love us and to be so loved. We still have common ground with other families. I’d like to believe that gives us hope for the future and what’s to come for our children.¬†With all mistakes and anomalies aside, we are your typical, not-so-typical family, if that makes sense. ūüėČ

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“She doesn’t look Autistic”

 

I’d like to start by asking, what does Autism “look like” to you?

Unfortunately, many people believe that there should be a look or “poster child” for those with Autism. I’m curious. Is this look supposed to be a human with their hair matted, clothes that reflect an abundant number of holes and/or stains as well as food covering their face? Is it expected that those with Autism aren’t cute or well dressed? I dress all my daughters the same, and while there are days that they have a stain or 2 on their shirt or a few sandwich crumbs on their face, I like to think that I do my best to have them bathed, hair brushed, clothes that match and cute hair ties. You will never see me take my children somewhere with me dressed better than them (with the exception of a difficult or active day at school/grandmas). So when I hear the statement, “She doesn’t look Autistic” my first impulse, as is most of ours, is to respond something along the lines of, “Well you don’t look ignorant either, yet here we are!” This statement really strikes a nerve with me.

Let me tell you a story of an experience my children and I had about 2  years ago. We went to a local splash pad on a hot summer day. Kailyn, who is on the spectrum, is obsessed with water and it seemed like a great idea for her and her sisters. She loves baths and pools. She is a little skeptical of sprinklers but is opening up to such experiences and this was the perfect opportunity to nudge her just outside of her comfort zone. I figured this could give her a little bit of a push, but also, maybe she would find enjoyment in the activity.

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After some time there, I was watching Kailyn as she decided to attempt to play with other children at the splash pad. By the way, this is a big deal for her as she keeps to herself often. They were playing with a soccer ball in the field aside from the splash pad and everything seemed fine until the mother of a few boys mentioned it was time for lunch. At this time, the children ran to their picnic area, ready to indulge in treats, and Kailyn continued to play with the ball. Here is where it gets interesting. The mother of the children walked up to Kailyn to request the soccer ball. Kailyn was just under 5 years old and didn’t respond to the woman (as she is developmentally delayed in speech) and tried to process what was happening. At this point, the woman became frustrated from being “ignored.” She pointed her finger about 3 inches from Kailyn’s face and began to yell at her and lecture her that it was her family’s ball and that she needed to give it back. Kailyn stood frozen.

Let me just start by saying this:

  1. Kailyn isn’t incompetent. In fact, she is one of the most intelligent people I know. Although she is verbally delayed in speech and has multiple sensory issues, she is still a human and, in fact, feels emotions. Sometimes it takes sensory input longer for her to register or to understand in the moment. It can take some time to understand why she is being reprimanded.
  2. Kailyn is kind. She shares. She was so excited that others would play with her and to show a common interest, she insisted on keeping the soccer ball in order to continue playing with the children.

At that point, I had never seen such a reaction from a mother, or any adult. No child should experience such exile. I picked up my then 2 year old daughter, Kamryn, and grabbed the hand of my then 5 year old, Kirstyn, and nearly ran toward this woman.

Let me mention that in addition to the circumstance, my children are “mixed kids,” meaning their race holds more than just one ethnicity. My children are 1 quarter Jamaican and 3 quarters a mixture of German, French, Hungarian, Irish and Cherokee. Here in Utah, skin color has proposed to be a big deal. Depending on your location, the way people treat you in general, can be unacceptable. Not to mention, we are not LDS and that rubs many people in Utah the wrong way.

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Regardless, my fury was escalating quite rapidly. I marched toward this woman and immediately said the one thing that I knew would make her back off. My mama bear came out. “She has Autism,” I explained sternly. The woman’s face immediately portrayed guilt. Good! You should be ashamed to talk to a child or any human with such ignorance and judgement, regardless of their temperament. However, when I enlightened her, she responded, “I am so so sorry. I had no idea! She doesn’t even look Autistic.” After imagining punching her in the face, the better part of me took over and I let it go to avoid the possibility of being charged with assault. I took Kailyn by the hand and we gathered our things and left. Not because can’t deal with confrontation, but because my daughter deserves better. The woman even tried to back out and say, “she can play with it!” Umm, no. Don’t feel sorry for my daughter or my family. All I ask is that you respect her the way you would want others to respect your children. I don’t think I had ever been so furious. How could she act so cowardly and mean toward a child? I’m sure she would¬†never put up with someone treating her children in such a way.

My conclusion here is autism does not have a “look.” Talk to any autism parent and they will tell you, if you know one person with autism, you know one person with autism.¬†It has been said that those with autism are harder to raise and live more difficult lifestyles due to their lack of physical features that indicate delays. Some say that because they don’t see a physical feature attributed to autism, they believe the child to be acting out and obviously that reflects on parenting and lack of the child’s self control. It is important for us to treat all as we wish to be treated, regardless of their personalities and traits. I don’t care if you are considered neurotypical or not, you are human. They are human.

To the mother who decided to reprimand my child, I wish you blessings. I pray you have changed and educated yourself. I pray your children grow to love everyone. I will never forget this experience, but I also have learned from this that anger doesn’t calm the the reaction of my daughter or others. Please know that ignorance is not bliss and that¬†all lives matter.¬†Bring out the best in others and help them understand so they too, can share their stories and advocate.

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I will end with this, Autism doesn’t define a person, it is merely an accessory of their personality. It is like having blonde hair or brown eyes. So many preach equality but don’t act on it. Ignorance is an epidemic. Please, find it in your heart to ask questions and show love to all. And for you mama and papa bears, remember, there was a time we didn’t know better. It’s okay to be angry. But as an advocate, show compassion and enlighten those who aren’t aware (I know this is easier said than done). You are strong. They are strong. And together, we can change the world.

 

*If you have any specific topics you would like me to cover or questions regarding Autism, please don’t hesitate to comment. I am happy to share what I have learned and hope to learn from you as well.*

 

The Beginning

I woke up this morning around 6:58 and found myself, not only still sick, but more curious than usual. I was on my husbands side of the bed, wishing he was home, but also love/hating that my 4 year old, Kamryn, was sleeping at a horizontal angle to my bed and digging into my side. At first, I thought it was Kailyn, my 6 year old. She fell asleep in my bed last night just after I migrated my 7 year old, Kirstyn, to her own bed whilst she slept. Its like playing musical chairs.

I’ll admit, it’s likely my fault that they feel so freely to fall asleep in my bed and that not a day passes where at least one of them isn’t crying because I try to enforce separate sleeping habits. However, as a mother, it is difficult for me to let my children out of my sight. I feel the urge to watch them grow, even when they sleep. I tell myself, I had children early in our marriage so I could put most of my time and energy into being a mom and raising these littles as best I can before exploring and discovering with my husband. We do some things, but our lives are very complex in ways that don’t allow us much time to indulge in each other. This was the choice we made and we are happy with that, with the exception of a few “What were we thinking” days. I think that is normal.

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Complex. I understand that any mom can say their lives are complex. They are! And in no way do I think my life is better or worse than others, it’s just different.

First there was Kirstyn. Ken and I had been married only a few days before I became pregnant. She was someone we were so excited to welcome into our lives. I was almost 22 and couldn’t wait to jump right in. My husband was gone on deployment to Korea for most of my pregnancy and returned home in September, just in time to watch the birth of our first daughter in early October. Not long after, we were visiting my husbands family for the holidays and found I was pregnant with our second daughter, on our 1 year anniversary! I was shocked! We both were! I was on birth control but didn’t know that antibiotics could cause an adverse effect. Regardless, this was a normal pregnancy, as was our first. We had special 3D ultrasounds to check for developmental issues just to be safe because my husband was born with multiple issues, including an underdeveloped esophagus.¬† Everything looked good. Then, wam – bam – thank you Ma’am, she arrived in our lives that August.

It was hard. I decided to leave my career as a military police officer when I neared the end of my first pregnancy and had been an at-home mom ever since. My husband was often gone with 24 hour CQ or training that took place hours away. When you work in the military, you don’t get the privileged of controlling your PTO or¬†even Paternity Leave. Everything is circumstantial. I was carrying around 2 car seats everywhere I went and Kailyn, our newest addition, had reflux and¬†was constantly fussy. More than Kirstyn. Thinking back on that time, I am not sure how I survived. I was tired so often and trying to start a new career in retail while maintaining a family life, my sanity and trying to become healthier and lose weight. It was pretty brutal.

As our children grew, we noticed a few things about Kailyn that were just different. We figured her big sister did a lot for her so maybe that was why she didn’t do certain things. We did all the typical military screenings and vaccinations as we were directed. We never felt reason for concern. In 2013, we moved out of Texas and into Utah to be closer to my parents because Ken had ended his term in the military. We lived with my parents for a while to try and get on our feet and my mom noticed a few things about Kailyn.

When she was nearing 18 months, and we were no longer living with my parents, my mom mentioned that she thought Kailyn might be hard of hearing. She wouldn’t respond when we said her name and covered here ears often, usually out of anxiety it seemed. She also babbled. There weren’t actual words but instead, sounds There was no “mom” or “dad” first words. But there were other things too, that were a bit odd. Her sleep cycles were completely off and she often squeezed herself into small spaces like under her bed or wedged¬†herself between her mattress and bed frame. She constantly walked on her toes and jumped, everywhere, all the time. At this point, I was upset with my mom for even considering that anything was “wrong” with my child. It took a lot of courage and thinking before I was I could resonate with the fact that the concern could impact the well being of my child. So Ken and I finally took her in to a pediatrician to address our concerns.

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They did a short questionnaire with us and a small screening that included her ability to make¬†eye contact and a hearing test (which was brutal for her). In the end, the pediatrician determined that her hearing was not a concern but recommended we contact early intervention. This was an eye opener. I was heartbroken. How could I, her mother, not have known to bring her in sooner? I felt guilty. What had I done to cause my child any type of delay? We still didn’t have a diagnosis but the pediatrician said to explore Autism. Autism!? I was broken. It took me at least 2 months to call and schedule an appointment. It took even longer for it all to sink in. We finally met with early intervention and after a 2 hour eval, we were told Kailyn has delays that land on the spectrum. However, because she was so young, they could not diagnose her. They would work with her on her fine motor skills and speech therapy. “Typically, a child should be able to do X at this age,” they said. This was very hard to watch and hear.

What happens now?! Will my daughter have friends? Will she find love? Will she ever talk? Will she have a fulfilling life? How will others treat her? How will she act? Is she going to feel emotional pain? Will she be able to drive a car, make her own food, or dress herself? The questions went on forever. As a mother, you fantasize about who your child will become and their potential and possibilities. I felt like that was being ripped out from under me.  I was terrified.

Fast forward to today, we now have 3 daughters. Kirstyn is 7, Kailyn is 6 and Kamryn, who is 4. I have learned so much within the last 7 years. My life is nothing I could have imagined. But I am also stronger than I thought. Wiser. More patient. I have many nights of “musical chairs” and waking up to my kids on top of me. I have equally as many 4am – 6am mornings because if I breath out loud, my children wake up. I swear they sense fear and pounce! I am grateful though, for the experiences and lessons I have learned.

That brings me here. This blog is meant to help strengthen those who are also going through similar struggles. Those who just found out that their life has been or¬†will be flipped upside-down. Those struggling to accept their lives as an “Auesome Mom” or “Auesome Dad”or even “Auesome Sibbling.”¬†I am here to answer questions. One thing I have found is that I love when others ask us questions. It’s good to seek understanding.¬†I will take that over judgement any day. I am here to advocate for these amazing humans and give a better understanding to the world. I am going to try to be vulnerable. Just a heads up, that is difficult for me. This is where you will read through my experiences and the experiences of my children, husband and sometime mother, as well.

I hope you find strength and courage in yourself and loved ones. I hope you can see them in the same light I see mine. So cheers, to the good, the bad and the ugly. To overcoming obstacles and all the good tears. May your adventures be enlightening and full of hope.

 

*If you have any specific topics you would like me to cover or questions regarding Autism, please don’t hesitate to comment. I am happy to share what I have learned and hope to learn from you as well.*

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