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Light in dark places

It is so easy to become consumed by all the things that my children are not able to do, because of their autism. I’m constantly reminded by social media, doctors, teachers, and simply meeting typical children that Max and Dempsey are different. Unfortunately for me, this has been the source of immense despair, anxiety, and depression. There are days, and have been weeks, when I cannot bring myself to leave the house. I am paralyzed with fear and uncertainty not just about their long-term futures, but even about day-to-day tasks requiring me to take them in public. I feel an immense amount of pressure sometimes, that I am the only one who can understand them. My own body tried to protect me the only way it knew how and I gained 20 pounds. Part of me knows that all of these emotions are irrational, but anyone who has experienced this dark, advesarial power knows it is very real. The irony is that Max and Dempsey are oblivious. They are innocent. They have no awareness whatsoever of the attitudes, judgements, or lonliness that swirls about them. I have no doubt that they are protected.

In the midst of this darkness, there is so much love. The steady devotion of a loving spouse. Friends who followed promptings to text or call me to come out. Family who quietly served me and my children. I began reading the Book of Mormon and heard the voice of the Lord speaking to me that I was not alone in the darkness. I recieved Preisthood blessings that offered peace and guidance. I went to the Holy Temple and felt for the first time in months that the darkness was subsiding.

Nothing about my circumstances has changed. It’s still hard. I still don’t know what the future will hold.  But as I do those things that I know keep the darkness at bay, there are more happy days than hard days. I am able to see my children as the Lord sees them and not as the world sees them.
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Everyday Max is becoming more and more my little man. He is a such a good-hearted soul. He tries so hard to understand and listen when I am giving him instructions. He has an immense fascination with phonics and loves to over-emphasize the sounds of letters and words. He is not conversational and does not call me Mom or address anyone by name, however, he loves to do funny voices. He is our little parrot and Adam and I get the biggest kick out of making him imitate funny lines from shows and movies. He just laughs at us trying so hard to get him to do it. He LOVES hats. He sees one he has to put it on, then have Adam put it on and go back and forth over and over. He likes to look in the mirror at himself with different hairstyles and hats on and listen to himself talk. Lately his has become very emotional. It’s all appropriate responses to situations, yet it breaks my heart, because I know there is so much unnecessary frustration because he doesn’t have the words tell me what he needs and wants. He is generally happy and loves to tease and laugh. He loves when Dad comes home from work everyday and chases him around the house. He repeats what Adam says to him “Imma-catchoo”(I’m gonna get you) so that Adam will chase him. We love Maximus so much!
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Dempsey is living up to her namesake of being a fighter(have I mentioned this before?).  At any rate, she is a very determined little spirit. There were about 3 weeks in January where there was no living with her. Nothing we could do would make her happy. Tantrums consumed most of her awake time. It was exhausting mentally and emotionally on all of us. Lately though, she seems to have turned a bit of a corner. She appears to be understanding a little bit more language.  She is not so quick to fly off the handle if I say no, or if she isn’t being understood immediately. She doesn’t use language to communicate at all, but she has learned that she can lead us by the hand and help us understand.  She has these moments during the day when she can sit on my lap for a whole five minutes and just engage with me.  You don’t know how special that is to me. She’ll touch my face, giggle, want to play little teasing games, she LOVES when I mimic sounds that she is making. It’s almost like I get to go into her world for a brief moment…but then just like someone shuts off a light, she’s done, gone, and I wait for the next time she lets me in.  We have begun to hear her little voice. She has started to memorize some songs and the alphabet and sometimes singing is our only way of talking to her. Love that little spitfire, I could burst!
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I love how they both put their blankets over their heads when they go to sleep. I love how they both still need their baby blankets even though they are 3 & 4.  I love(& don’t love) how Dempsey drags the bar stool all over the house so she can reach things. I love Max’s wicked dance moves when he hears some music he loves. I love how Dempsey always has to have something in each hand…two toys, two snacks, two crayons. I love that even though they have never called me Mommy, they still cry when I leave them, miss me when I’m gone, and are happy when they see me again.  I love being their mom.
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March 8, 2014 - 2:18 pm

Briana - You are such a powerful writer. You have a beautiful family. I love your strength, your insight and testimony and I love you!

February 20, 2014 - 5:49 am

Kandice Searle - Beautiful post. It made me cry…it made me cry for you because you are my friend and I feel bad I can’t do more to help. it made me cry thinking of the tears I have shed in the past at similar situations. It made me cry because of what happens in a negative way daily in our home as well as the uncertainty of the future.
I spent a good 2 weeks in bed after my surgery the past few weeks …not because I had complications, but because I was so mentally exhausted I couldn’t function.
Thank you for sharing. I’d love to blog more…I have the words but I would love some real life vivid images of my true life…we need to chat more about maybe capturing some images of my life….and chat and vent and have a shoulder to cry on :)

February 20, 2014 - 4:49 am

Bonnie Lillywhite - In some ways I can surely identify with you. Thanks for your insights. It is always good to have reminders from people who understand in some way what life is like with a not so ordinary family member who you love and want to connect with. So thankful for so many wonderful people who show their love to him and us.

February 20, 2014 - 4:08 am

Whitney - I love your beautiful kiddos!

Identity Crisis

Here’s a serious throwback for you all– taken with my phone from my yearbooks 8th grade through senior year–such a baby face.
Apparently, I only wore polos, was particular about my bangs, and went a little crazy with the eyebrow plucking.

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I don’t ever remember having big dreams for myself when I was a kid. I’m sure I had delusions of being a vet or something just because I liked our family dog, but as I became a preteen and teen I put myself on the fast track to mediocrity.  Don’t get me wrong, I got straight A’s and scholarships, but I was so afraid of failure that I remember thinking early on that I would set my career expectations low so that I could be an over-achiever.

Sad.

I always had an interest in video. I mean, when I turned 16 and got my first job all the money I made went toward buying my very own video camera instead of my very own car.  I remember hanging out at the library(circa 1994 pre-internet in Vernal) and trying to read up on jobs that I could do in the film industry.  I would read the credits of movies and try to figure out what all those jobs were, and trust me, there were pretty much no books about that in the tiny county library! When I finally made it to college I was so incredibly intimidated by the world that I just started doing what came easy instead of what I loved and eventually ended up with a high school teaching degree. Ha! I have yet to set foot in a high school to teach aside for my student teaching.

Anyway, the point I’m trying to make is, I didn’t know who I wanted to be. I needed the feedback and praise of others to define me and that’s why I did what was expected or what came easy.  Once I had children, I was by default, defined as mother.  Ironically, my children don’t even call me mom, so that feedback that I had constantly relied on would take on a very non-traditional(and at times, non-existent) form.

I see people out in the world who are defined by their trials. Whatever thing they are fighting in their life seems to define who they are as a person whether it be their sexual orientation, race, political agenda, their job, their weight, illness, financial situation, etc.  I’m sure we can all list people we know and instead of naming them we say, “the gay guy, the black lady, the old democrat, the fat chick, the poor man with cancer, the wealthy guy…”. For some reason, we like to catagorize each other and ourselves. Perhaps it’s derogatory, or maybe as I have been learning about the brain it is just a natural tendency of the left brain to look for patterns and group things together.(i.e. the natural man)ic_0026

So it made me wonder how people speak of me and how do I think of myself?

Am I known as “the mom of two kids with autism”?

Now there are many schools of thought about the nature of Autism. Is it a disability? Is it just a different way of being? Can it or is it something to be cured?  I don’t know the answers to these questions, but what I do know is that what I am experiencing right now, as far as I’m concerned, is a trial.  Perhaps my children do have special abilities and ways of communicating that are not of this world, but for now they need to learn to survive in this world and unfortunately for them–and now 1 out of every 88 children born–we live in a talking, socializing world.  When my 4-year-old son hurts himself he runs to me crying. Like any mom, I automatically ask him questions, “are you okay? what happened?” I see clearly the pain in his eyes and how badly he wants to tell my what happened, but he has no words.  I see him looking at me sometimes when I ask him questions. He only echos the questions, but his gaze is so intense that I know he is trying to communicate something to me, but for some reason his brain won’t allow him any form of deliberate communication(signs, gestures, words of his own)ic_0029

Dempsey is even worse.

She understands maybe 10-20% of the words I am saying to her and speaks none.  She has no boundaries. Any food, toys, objects she sees are just an extension of herself and she feels every right to have them.  If I say no, immediate meltdown. In many ways, it is like having a 9-month-old in a 3-year-old bodyic_0025

Many times, and I don’t mean to be disrespectful to my children, but my husband and I have both said it, speaking to them is like trying to teach a dog to speak and understand English. The brain cannot be forced to learn something that it is not developmentally capable of…not to say they will never be capable, but if this is not a trial I certainly don’t know what is.ic_0027

All that being said, I don’t know if I want to be defined by my “trial”. There is a whole community out there of parents who are proud, who dive in and research, and go to all the conventions, and wear blue, have fundraisers, speak out about Autism every chance they get.  I get it. I know that there wouldn’t be as much awareness, information, and resources out there for me on my journey if it weren’t for those over-zealous parents, educators, and doctors.  God bless them for dedicating their lives and wanting to redefine how people view autism.

I guess that I get to decide how I want to be defined. My friend Mindy, always reminds me there is a season for everything. Perhaps some will always define me as “the mom of two kids with autism”, but even though I want to put my story out there and help those around me understand, I hope there are days ahead that I won’t be defined by my children, because I am also:

Joie, Adam’s wife
Joie, who likes photos/videos
Joie, who is sometimes a health nut
Joie, who is kinda funny
Joie, who likes to read/write
Joie, who knows Spanish
Joie, with a testimony of Christ

feel free to add more to my list–wink wink.:)

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February 21, 2014 - 10:13 pm

Melica - I loved the two posts I just read! The video of your kids is amazing! Your website looks great too. I wish you could help me with my website. I’m lost.
I had no idea your kids had autism. Bless you in your difficult journey. I hope things go well for you and for them.
Take care.
Love, Melica

February 21, 2014 - 2:42 pm

Janel - You write beautifully and I am glad that we can keep in touch this way. To me you have always been:

Joie, who is not afraid of doing hard things.
Joie, who is a good friend.
Joie, who is beautiful.
Joie, who is smart.
Joie, who is a good listener.
Joie, who is hilarious.
Joie, who always has cute clothes.
Joie, who always has good advice.
Joie, who is talented in so many ways.
Joie, who is incredible.
Joie, an example to me.
Joie, a good one :).

January 9, 2014 - 8:06 pm

Kandice Searle - Beautiful. Just beautiful. You definitely have a talent of putting your exact feelings to words. You are also excellent at capturing very candid photos that speak volumes of emotion. You have such talent!!! Beautiful post! :)

January 9, 2014 - 3:41 pm

Mindy - Joie, who speaks to my heart and makes me cry.
Joie, who is definitely funny.
Joie, who has an amazing sexy husky voice.
Joie, who really SEES others, and understands.
Joie, who makes me want to be a better person.
Joie, who is very smart, and is always willing to share knowledge.
Joie, who has gorgeous enviable hair.
Joie, who has exotic beautiful eyes.
Joie, who is my friend, and I am lucky because of it.

January 9, 2014 - 5:55 am

Tamara - I completely relate to the first part of your post, unfortunately. I never thought that I could do anything hard, so I never got a college degree, never even considered a mission, basically never did anything with my life until I married Ryan and started our family. I have always regretted that :(

I definitely think of you as stylish, funny, amazing photographer Joie who doesn’t mind answering my questions or letting me tag along on a photo shoot every now and then. Did I forget to mention that you are also a great cook (seriously, I still remember the mole you made when we visited you in cedar city) and interior decorator (I even copied you a little with our curtains, and someday I’m going to get that huge clock!)

Hanging out with you and Adam is always fun and my cheeks always hurt from laughing. Really wish we were a little closer.

January 9, 2014 - 4:10 am

Kristi - Joie, there are no words for how beautiful this entire post is!!
Your video was gorgeous and the music, perfect! Your yearbook pictures brought back memories, I remember the polos and the bangs.
I must be a left brained type person because I remember faces and categorize people far more than I should…. I rarely remember names. :( There must be something to be said then, because I could never categorize you. The way you look at the world is uniquely your own. I’m grateful that through your pictures and words I get a small glimpse. Because I know you I am a better person, so Joie, a Christlike example.

What’s old is new.

I’ve been horrible at blogging, which I regret because I love blogging. It is very cathardic for me. A release, a place to vent my frustrations, and just really put it all out there. So I apologize now if I offend anyone, I am really just trying to be honest.

So much has transpired in 3 months.

Max completed 12 weeks in the St. George Brain Balance Center

It was a huge undertaking and accomplishment for all of us! We saw him gain so much:

He is more aware of his body(which give me high hopes for potty training) and wants to climb, and pays more attention to people walking around him.

I can tell he is understanding language so much better.  He focuses on what I am saying, he studies my facial expressions, he searches to know what I am pointing at or asking him to do. It is truly amazing for me to watch him transform.

He is using what language he does have much more deliberately. It is still mostly one word at a time, but he does have some phrases under his belt as well. However, I think he uses them as one word even though they are 3(i.e. let’s go outside=lessgoside, I want some chicken=wansomchicken, I want to get down=wangetdown), but this mimicking and word association has much more complexity, so I consider that progress in the right direction.

85% of the time he responds immediately when I call his name. This is huge, because I can have him walk around with me in public and trust that he will listen and respond to my instructions. He seems to have gotten better control over his impulse to run toward what he wants and he periodically checks to see where I am at the park, although he still doesn’t have an understanding of danger or a sense of being lost.

He is associating a lot of language with social interaction and taking initiative to say it on his own without parroting!! I have heard him say “bye”, “goodnight”, and “hello” all in proper context without promptings from me. HUGE!! and to think a year ago at this time he couldn’t speak at ALL! I am astounded at the progress he has made in a year and I attribute much of it to Brain Balance.

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Dempsey loved playing in the Brain Balance lobby while we waited for Max to finish his session.

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Once, at one of his first sessions Max fell and hit his face and nose right on a grip of the climbing wall. He had a fat lip for about a week and I thought he wouldn’t want to go back, but once he calmed down he was fine. He loved going to his sessions so much. He was always so happy and excited to work with the girls there. You would never even know that it was therapy.  To this day, when he gets really upset he still has a little scar under his nose that turns red.
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Dempsey has come a long way, not only in the last 3 months, but just in the last 3 weeks!  Overall she has been a lot more challenging than Max. Up to this point she has been completely non-verbal. There is some parroting, but no meaningful verbal communication. She can go into a tantrum at the drop of a hat. She hates going to the grocery store, or any store for that matter. I’m pretty sure it is the fact that she is confined to a cart and I don’t allow her to explore. I immediately have to grab a bag of organic potato chips or GFCF cookies to keep her content for a short window while I grab a few things, and at the same time making sure Max isn’t wandering off or getting in other people’s way. It is very draining to take them anywhere by myself, and while I will do it, I try to avoid and have become somewhat of a hermit.  While Dempsey has many similarities to Max, many of her sensory issues are different. You’ll find her covering her eyes and ears a lot more when she gets over-stimulated. She still walks on her toes in order to engage her muscles and feel her body in space, but we know with more exercise she can over come that.  She seriously struggles with her palmer reflex. She can’t do “popcorn popping” or a bump-five hand motion, so in order for her to work through it I have her squeeze and smash playdough.

The past couple of weeks we got back to doing exercises with them, which we had neglected since our move to Vernal. This is Dempsey’s first experience with the exercises and I was so apprehensive about how she would do, because she is very strong-willed, resistant, and downright fiesty! I decided I needed to conquer my fear of my now 3-year-old daughter and just dive in, because I cannot go on letting her think that she is in control…
so I had Adam work with her first. hehe.

She actually responded better than we thought. It wasn’t perfect form and technique, but it was a start and we could see that with time and consistency she would be able to catch on and build the endurance and attention span. After just two weeks of working with both of them 2-3 times a day for about 20-30min sessions we can tell that they are just all around more calm and content. They are able to focus more during the day. I am trying my best to limit screen time and sugar. I can just tell a difference in Dempsey being more present.

She is understanding more of what I am saying to her(receptive language), which a huge precursor to her being able to speak back(expressive language).  I hear her singing Frosty the Snowman and Twinkle Twinkle Little Star, she loves music.  I see her slowly turning a corner with her language(we’re talking 2mph here–snails pace), but any change is good change! There have been times when I have been so frustrated with her, because I don’t know if her tantrum is something she can’t help developmentally or if it is purely frustration because she is really trying to tell me something and she can’t get it out.

 

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They both had their birthdays and turned 3 and 4.  I can’t believe how big they are getting.  It’s comes with excitement and a whole new set of challenges. I love seeing them grow, change and progress.  There are still so many things about them that are true to their age. However, I have been feeling lately as they are moving away from being toddlers, they cannot get away with immature behaviors seen as “cute” and “baby-like” before. I am beginning to encounter disgusted looks from strangers when they have tantrums in public and when I try to explain that they have autism I am starting to get those who find it necessary to give me unsolicited advice on how to control their behavior or teach them to talk. I have a slight realization that I will have to go through this at each stage of their life. There will be new challenges for them and me and I have to emotionally prepare myself.

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As I briefly mentioned above, we moved.
During the summer we found ourselves in a familiar place…at the end of our rope.
Adam had finished his MBA in an astonishing 6 months and then made the transition from blue collar to white collar and tried his hand at being a loan officer. Although we loved the company and they were very good to us, we just didn’t feel like our future was in St. George.  After a trip to visit my parents and talking with a few people in town, Adam told me that he really felt like moving back to my hometown what the right thing to do.
I bawled.

I had mixed emotions about moving back to Vernal. Of course, I wanted to be closer to my family, but I was scared to death that I would be isolated from the resources that Max and Dempsey needed. I also had some irrational fear that moving back to my hometown meant reverting back to the person I was 20 years ago and I didn’t want to face that.  Adam moved up first because he started a 9-month program in Petroleum Technology. I stayed behind in St. George for 6 weeks, because Max was right in the middle of his 12-week course at Brain Balance.  Luckily, I had Lindsay there to help me. It was tough being a single parent of 2 with autism.

We went at least 3 times a week to jumpin’ jacks, splash parks, the gym, preschool was 4 days a week hallelujah, and brain balance.

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I didn’t see Adam for a whole month and I finally got to see him for my birthday.  I tortured him and made him take me to a vegan restaurant, because I had been cleaning up my eating along with the kiddos and wanted to try it.  It was….ok.

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We’ve been in Vernal for about 2 month now.
I love having my family nearby.
I love being able to reach out to good friends more often and having a support system.
Our ward has been very understanding of Max and Dempsey.
Adam is doing great in his program and we see so much opportunity for the furture!

However,
It’s freezing and dreary.
Although the preschool here is doing a good job, I still miss the St. George system fiercely.
It is tough to find the food I need for their diets, it’s expensive, or I have just run into horrible service when trying to order through grocery stores.
There is an overall lack of activities for special needs kids in the community, be it public or private. The state preschool is pretty much it…

 

Phew…that has been the last 3 months in a nutshell.  Mostly the good, but some bad and ugly too.
Looking forward with optimism.

Part of their world.

I know. It’s been like a couple of months since I last posted.  Max only has like 2.5 weeks left in the Brain Balance program.  I have a lot to catch up on, but I don’t want to worry about that right now.  I just want to record something that happened and what it made me think about.

Today we were at the splash park.  We go to 1 of about 6 different splash parks at least a couple times a week.  It had been almost a week since we had last been and Max was getting really anxious to go.  He would keep saying “wador, wador” or “lessgoaside”(let’s go outside) and I knew it was time to blow off some steam.  On this particular day, I was constantly rerouting Dempsey away from other people’s snacks and she was getting very upset with me.  After about 20 minutes of this, I knew it must be time for lunch so I picked her up and went to go get Max out of the water.

I really didn’t want to go so soon. I just stood there with Dempsey screaming in my ear, but I just had to watch Max for a minute.  He was in a different world. He was laughing, running, giggling, and shrieking with pure joy as he let the water spray him in the face–totally oblivious to everyone.  When I called out his name and told him it was time to go, he immediately snapped out of his world and I could tell he was seriously trying to concentrate on what I was telling him.

As I reflected on this event, it occurred to me just how much of a verbal/language dependant world we live in.  Sometimes I try really hard to relate to what my children are going through.  I always think I have some idea because I learned a 2nd language(Spanish), but it’s not really the same experience as learning to communicate for the first time.  I had English to refer back to and I also had general social skills in which I could communicate with beyond language. However, my children have no basis for reference, they don’t understand gestures, expressions, or body language.  I sometimes wonder how frustrating it must be to live in a world where they are expected to put meaning to all the garbled sounds they hear all day long, when their tiny brains so clearly operate in an entirely different way.

As much as modern medicine has decided that they are “delayed” and somehow have a “disorder” I so desperately want to enter their world one day. It seems blissful.

I have no doubt that someday they will explain it to me.

Stay the Course

This past week was rough.  There has been some upheaval and stress in the background of our lives and even though I have tried my best to keep up on the kids’ routine, they can see straight through any kind of act I put on.  Their very countenance is a reflection of how I am feeling and they behave accordingly.  So, as much as I would like every post to be about sunshine and rainbows, the reality is, I also want to remember how the other 6 days of the week are. 😉

Max has not wanted to do his exercises lately. He has become stubborn, whiny, and just lays there.  They told us when we started BB, that as his brain started making connections that he would go through developmental stages that he has missed.  I am hoping that this is just a defiant stage and means that things are changing, or it could be perhaps he is just getting bored with the whole routine and needs a new challenge.  Either way, we are taking him into the center this week, so we are excited to start seeing the next round of changes.

The other hard thing is summer. I love summer, but the days are forever long and it’s been 105+ degrees all week.  I try to get creative with keeping them occupied, but this past week there was one too many movies watched, and they were climbing the walls by the end of the day.  By the time Sunday rolled around, Adam and I could clearly see that the lack of activity and abundance of screen time throughout the week had turned them into little beasts.  It was a great reminder and evidence that all the changes we have been making are working for them and we need to stay the course.

Yes. I’m the mom captures these kodak moments.