Being a MAC in a PC World

Sometimes this journey is amazing and beautiful. Sometimes it is sad and lonely. Sometimes this journey has no words to explain what it is. Yet, we all do what we have to do, press on.

My heart broke this week for a family I adore. Mom and I have such similar thought processes and are raising our girls to be strong in spite of what the world throws at them, including ignorance.

Her little girl is 9 and while they are working on getting her what she needs she is still working on who she is. I love that she is creative and unique. Yet, someone told their child that they couldn’t play with this girl… because of her autism. There are still people out there that think autism is … contagious and you can catch it from someone with autism.

It’s frustrating to think that we still are dealing with the stigma of don’t touch that person because you might catch their disease. When in fact… autism isn’t even a disease. It’s a mental health issue caused by the brain being wired differently and processing differently. Like the world is a PC world and people with autism are MACs. They can interface and work together but it takes time and work to get to that point. Some software and technicians to get there.

We are those technicians to teach the software to help them work together.

Autism is NOT contagious. But the smile of those kids on the spectrum IS.

J, tell R that Em and I love her just the way she is and will stand by her (and you) to the moon and back.

 

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The Role of Acting

I wish I could share more photos than this one. We’ve opened our lives up to you but other families haven’t. So I will share this photo from this weekend’s performance of Aladdin.I can’t even begin to tell you what it’s like to see the bond these kids make in a week that lasts over time other than it is precious and wonderful. These kids who audition together and act together but cheer each other on. They get excited to see each other and keep in touch. For Em, it’s a dream come true. To fit in. To belong. To be wanted.

Em never smiles like she does when she’s with people who understand her and refuse to pass judgement. They see beyond the diagnosis of Autism and the rest. Here… They see Emelie. Nothing More. Nothing Less. She feels free to be herself and finds people care about who she is. Not just who she is but also helping her learn her strengths and overcome struggles. 

Thank you for this program Missoula Children’s Theatre. Once again the traveling directors were amazing. Thomson and Jas connected with Em. I felt horrible one day though because all the time Em (the girl who normally advocates for herself) made me tell them she has Autism, they were so concerned. BUT it was FOR her. What did she need FROM them. What they didn’t realize, she’d already told them all that, just hadn’t told them why.

When I went to clear it up later, they were so gracious and kind. And Em loved them as much as she loved the ones from before.

The thing she loves best, she can be herself. There is no judgement. There is only acceptance and the fact that they believe in her ability. They don’t see what holds her back. Only what makes her shine. And when she does struggle, they don’t let it define who she is. Sometimes they may not even be aware of it.

If your community doesn’t bring them in, it’s worth looking into. If they do, support them and the organizations that sponsor the events. While they can’t include every child who tries out or they encounter, they ALWAYS build them up.

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Em in Aladdin as Cassim
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Em in Wiz of the West this summer.

We Are All Broken

We are all broken in some way. It’s how we handle our brokenness that separates us.

I want you to think about that for a moment. Before you read where this is coming from and what I’m about to say. Read that one more time. We are all broken. We are all broken in some way. It’s how we handle our brokenness that separates us.

We were driving home the other night and having a great conversation. During that conversation though, Em says she’s broken. She is awesome but broken. So this blog is an open letter to her. The message is so important that I wanted to share it with you. I just hope that the message resonates.

 

My Dear Emelie,

This week you told me how you feel broken. You continued on with how you are broken because of your challenges and autism. My gut instinct was to tell you how you aren’t broken, but then I realized we all are broken. We all feel there is something “wrong” with us. There is something all of us dread or wish we could change. We all have scars and wounds. Some of them are visible but often times the brokenness we have, we hide from the world. We all have things that will break us too along our journey through life.

That’s what makes you so special Emelie. You choose to embrace what you feel gives you that “broken” feeling and make it so much more. You don’t let it define who you are. You understand it’s a part of who you are but not your definition. There will be times in your life where you will feel even more broken. The hardest thing in life is to manage our broken times and brokenness without letting it rule over us and who we are.

Some of us embrace our brokenness. Some of us hide it. Some of us hide our brokenness better than others. We all have to learn to deal with it and cope with it no matter what we choose. Those who learn to embrace it and allow it become part of who we are without allowing it to take over have a strength that cannot be matched. Although, that doesn’t mean there won’t be times that you struggle to be who you need to be or want to be.

As you learn to mold yourself into someone you can be proud of being, you allow others into your journey. You still deal with the harder stuff on your terms but overall you carry a beacon of hope for others who feel broken, even if they are feeling broken for other reasons. While some of us deal with it in the middle of night alone when it’s dark and quiet and others it shows on the surface you have found a balance in how you deal with it.

I love to think of all of us as pottery that has been put back together. Not with a clear invisible superglue but rather veins of gold and silver. Very much like the Japanese practice and philosophy of Kintsugi. It shows off that broken history with a beauty that is unique to each piece of pottery. After all, no two things will ever break exactly the same way. Just like when you fix it, it will never fix perfectly.

You, my dear one, are a rare joy to watch. Reminding me daily that none of us are perfect and that is perfect in itself. Life would be boring if we all were exactly the same. This brokenness you speak of adds to your beauty, grace and personality. It doesn’t define it. The fact you embrace it just shows your ability to be strong in your weaknesses.

Brokenness really shouldn’t be about the flaws. It’s about the beauty and grace in which we carry our brokenness. In the process we heal. We are whole. We are perfectly imperfect.

I love you.

Love,

Mom

For more information on Kintsugi:  http://www.washingtonpost.com/wp-dyn/content/article/2009/03/02/AR2009030202723.html

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The Art of Friendshiping

Once upon a time, I heard Em described as both a social butterfly and a shy little girl. In a way both were true. I watched her try so hard to figure herself out. Throughout those struggles, there was never quite a dominant character when it came to those two descriptions. It’s only been in more recent times that she’s found that balance.

Emelie didn’t always have a clear understanding in how to interact with others. It was the hardest struggle for her when it came to friendship. She was so confused on perceptions and expectations. There was a perplexing nature that both intrigued her and challenged all she was. She didn’t understand how to read people’s body language or facial expressions.

There were and still are times that she misinterprets how things are meant or what someone is saying. Communication is so complicated yet everyday she makes the effort to try and understand more of how it works. She prefers written dialog and artwork because she can pause and consider every aspect of what she is saying or what is being said. She is learning how to read people through body language and expressions. Reading between what is being said and how someone acts is still very foreign to her, but she does make an effort.

So friendships for Emelie have always been a challenge. Young children tend to be open to others around them but when a new person comes into a cohesive group sometimes they accept them with open arms and other times it takes awhile to fit in. However as kids get older they tend to be more apprehensive to new individuals and if you don’t “fit in” or what they see as “different” sometimes it makes those transitions difficult and isolating.

Em struggled to make connections. However, early on there was a girl, prior to Em’s autism diagnosis, who got her and could pull her out and into a world that was confusing and daunting to Em. As long as M had her hand though, Emelie was brave and while cautious still stepped out of her comfort zone. It may not have stopped the tears or struggles but it gave her the strength to push on. She was making progress. Then we both moved.

In this place she’s always had people that reached out to her but she didn’t know what to do or how to respond. She was unsure of herself and the expectations of what friendships entailed. She felt awkward and overwhelmed. Yet, the kids were always there. She may not have gotten invited to do things outside of school but they were there. They also seemed unsure how to approach her or how to “help” her.

Friendships are confusing for Emelie. That’s it in a nutshell but she’s better than she used to be. She has a group she now hangs out with at school; a core group who gets her quirks and understands her. Tater started her down that path last year. She encouraged these connections and friendships. She fostered that dialog of how friendships worked and how Em worked.

She gets Em. That was evident when Tater took a girl that felt overwhelmed and lonely and gave her the courage to stick with it and not give up on people. She coaxed Em to come out of that shell and let people see the “real” Emelie. She wanted Em to let them get to know her and be her friend. She took one year to get that ball rolling and did what no one else had been able to since M.

While Tater no longer goes to school with Em, she is still that friend that can go without seeing Em for a long time and pick right up where they left off when they get together. She still is reaching out and is holding Em’s hand from a short distance. She encourages Em. She defends Em. She protects Em. She’s fiercely loyal. We all need those friends.

We sometimes even get to be those friends. You see, now Em is that friend. She’s loyal to begin with. And she is very protective of those she cares about. She learnt what being a friend is through examples, patience, and most of all through kindness. In the process, friendship became a little less confusing and more inviting and welcoming.

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Tater and Emelie Being Silly Girls

Hope Is Our Journey

We choose to share our story. We choose to share many aspects of our lives. Sometimes it seems like our journey is a piece of cake; no big deal. There are parts of our lives we don’t share though. There is a dark side to our journey too.

Autism isn’t pretty. It’s not all rainbows and sparkles. There is a weight that comes with it. We find there is pressure and frustration from every angle and direction that we try to cope and contend with. The mental and physical exhaustion lead to moments where you collapse in on yourself. The tears that come when you least need them and expect them. Then there is the balancing of keeping your child safe; from physical self harm to the lashing out in a meltdown to the fear of elopement and knowing where your child is and is not.

Yet, while we feel it’s important to share some of that story, that’s not the side of the journey Em wants to share. She’s slowing letting others in on that dark side but she has a very good reason behind her request of the journey we share. She wants others to walk away from our journey with HOPE for theirs. Hope is why she is starting to share where she’s been and how she got to where she is today. She has made hope our journey.

Em is starting to also understand that sometimes we need to learn to pause and reflect before we react. I didn’t realize how much she was getting that message until last week. She wrote this post for Em’s Journey on Facebook. I think it shows amazing growth and maturity for her to realize this now at fourteen and a half. Some people twice her age and more struggle with this exact concept.

She wrote:

HI its Em here. I wanna post this about what’s going on with me! Well I’ve been relisting (*realising) I’ve been letting life get to me to easy and I’ve gotta let go a bit! I have stopped mentally beating myself up! I’m still having a hard time not taking what people say to serious but serious enough to understand what they mean. well that’s all for this week BIA  Em!

Hope! Cling to it. I’m a firm believer in the fact that nothing set in stone as to what their future holds. I’m learning to let her show me where she is going and holding onto hope that she’ll overcome anything in her way.

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Great Power; Great Responsibility

Conundrum by definition means something confusing or puzzling. Let’s be honest for a second, there is a lot of confusion and apprehension associated with “labeling” a child with a diagnosis and telling others about it. It’s a tough call. I’ll just scratch the surface a bit in this blog. My personal take on the “labels” depends it’s on how and why the “labels” are used. We have so many children who fall through the cracks for such a variety of reasons and yet if they had that “label” they could get resources, therapies and treatments that are specifically geared for that particular type of child. While other children fall through the cracks because of the “label” we have being used to define who they are and what they are capable of. It’s a doubled edged sword.

“Labels” can be useful. However, they needed to be exercised with great responsibility and caution. I liken it to what Uncle Ben told Spiderman’s alter ego Peter Parker, “Remember, with great power, comes great responsibility.” Those “labels” that we give our children while necessary are also very powerful and if used improperly can lead to more harm than good. It’s also a fine line that can easily be crossed if we aren’t maintaining constant vigilance. Why I say that is because even if we choose to use the “labels” appropriately, others may not. That includes the ones that the “label” was meant to help.

Those “labels” are helpful in obtaining therapies and resources. Often, without that attachment we are struggling to get others to understand some of the obstacles and challenges our children may face. Yet, if presented in the wrong manner, that is all people will see; the “labels” and challenges looming overhead like a storm cloud. The true benefit of a “label” happens when people realize that a “label” doesn’t define the individual and uses it as a resource to give tools to work through those challenges to those individuals.

Another drawback to a “label” is the fact that often it brings about a blanketed idea of what is being dealt with. When you get that diagnosis it’s often because you met so many criterions. It’s not that you are all identical in how it presents itself. Every person is unique in how something manifests itself. Take the autism spectrum and how vast and wide it is and see how different each case is to understand that point. Not everyone will have the same challenges or obstacles. That “label” is a guideline as to narrow down the roadways on a map in what may help someone.

We also have to be willing to educate and stand up to those who will use it as an excuse or crutch rather than an explanation of what might be going on with an individual. Including the ones that the “labels” are there to protect and help. We need people to learn to see a big picture no matter the diagnosis. They need to look and see both strengths and weaknesses. To find the assets of individuals and help them build upon those strengths as well as to learn their deficits and find ways to help them rise above those weaknesses. No matter what we see on the surface or find in the blanket definition of a “label”, everyone has strong points and weak points that they can learn from. The best place to start is to encourage them to not let a “label” define who they are and to challenge them to find out who they are. Teach them that they get to choose who they become. They don’t have to be a victim of their circumstances, unless we allow them to be.

It’s a challenge sometimes knowing where that line is and when the explanation becomes the excuse. The key is to be willing to have consequences for actions. While others may challenge the severity or levity of a consequence for an action, it ultimately comes to us to determine what will be understood and not derail progresses made. We can start by teaching our children that they can raise above the sum of their diagnosis and “label” by reminding them it doesn’t define them. We can use these “labels” as tools to help them navigate life.

This is what we are as parents, caregivers, educators and emotional/physical/health providers are suppose to be doing. Sometimes we are walking blind without having an understanding of what the child needs. Often the only way to get the information of what that child may be dealing with is to have that “label”. It’s not there to say that someone is defective or not “normal”. Normal isn’t even a setting on a dryer anymore. There is no such thing as normal. That “label” is there to say stop and proceed knowing what roadwork may be on that path.

Once you get past that sucker punch a “label” and diagnosis can give you, you start to process you next move; like in a game of chess. You observe the moves you need to counter in order to overcome the other side. Once you understand that hope remains that there will be options. The hope is that those obstacles will not be roadblocks. We cling to the hope that they can still choose their path in life with a few more obstacles to overcome to get there.

I know for some people it is very scary to think of their child with a “label”. Sometimes it happens because people just aren’t ready for a diagnosis; they are still in denial. When it happens though once the realization of what it means begins to sink in that “label” can be the most valuable tool that they have. It’s the start of understanding what that child’s needs may be. Along with that though begins the challenge of separating a “label” from a human being that has feelings and needs. A “label” is neither their name nor who they are or will become. Be kind. Everyone is fighting some kind of battle you may never know anything about.

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Open Letter To Parents

Every year I try to post at least one time an updated letter for parents of newly diagnosed children on the spectrum; things that I wish I might have known or heard from others at the start of our journey. It started as a project I joined and I’ve just kept doing this since. I think it’s also a good reminder of things for parents who’ve been on this journey awhile as well. Here is this year’s letter.

Dear Autism Mom and Autism Dad,

I’m writing you this letter to bring you both hope and tell you things I wish I’d heard when Em first had her diagnosis; if I knew then what I know now kind of thing. To be honest, I wish I knew a lot of things when our journey first began. Emelie received her diagnosis late and there are times I have struggle wondering if I had pushed harder, would her diagnosis have come sooner? Would we have been able to better her cope with life sooner if she’d had the therapies to help her function in environments that stressed her out? How different would her life be now had we did all the early interventions then. At the end of the day, all the questioning in the world won’t change the fact that here we are, a little over three and a half years later. She’s fourteen and a half years old and living and loving life most days.

She has a diagnosis of ADHD, ASD (Autism Spectrum Disorder), Anxiety, and Sensory Processing Disorder. She also deals with vitamin D deficiencies and has asthma, seasonal allergies and scoliosis. She takes a balance of supplements, medications and therapies to get a healthy balance in life. She loves solitude and quiet. She loves acting in plays and musicals. She loves animals and anime. She will spend all her time either drawing or on her computer. She has many common interests with her peers. She struggles with communication and reading body language so social interactions are limited and can be challenging. However, there is absolute hope for her future.

I saw all the signs and all the “red” flags but I didn’t push it or follow my gut instinct. As she went through her therapies and found “grounding” in life and how to cope in situations life has gotten better for all of us. We learned to communicate better as a family. We slowed down. We planned our life out a little more purpose driven. And yes, there were times we felt alone; but we also found support in unexpected places. The struggle was to learn to value our roles and appreciate it each other, but in time as we learned about each other’s needs we realized how much we need each other.

She’s one of the girls with autism that fell into the crack. She doesn’t fit this stereotypical ideal that society seems to imagine when they hear autism. Emelie is social. She can hold appropriate conversations, when she chooses to. She wants friends. She doesn’t like groups and while she fixates on things, they change like the wind sometimes. She can problem solve some days. While she still struggles with communication, she has found ways to share her needs. It didn’t all happen overnight. She still has to pace herself but she is using her coping skills to get herself through tough situations; things that used to be dynamite on a fire for a meltdown are now sparklers blowing in the wind. It bothers her but it isn’t the end of the world.

I wish someone would have told me that it’s going to be ok. Take time to grieve your expectations for her but please realize it isn’t the end of the world. She will live life more than you can imagine. She will do everything with her whole heart. That’s more than most of us can say. She will struggle but with some encouragement and time, she will get back up and press on. She will succeed at whatever she sets out to do, just maybe not success in the way that you think.

Right now confusion, guilt and trepidation are running through your mind. Emotions are taking over and the future seems overwhelming and you want to know where to begin. First, it’s not the end of the world even though it may feel like it. Take each day as it comes. Follow your gut and if something doesn’t feel like it is right or there is a therapy you think will benefit your child don’t be afraid to fight for it and be heard. This road won’t be easy but the blessings and joy are worth the time. It may not always seem that way, but you’ll get there someday. And don’t beat yourself up over the bad days. You’ll find that this journey is a lot like a cha-cha. You may take 1 step forward and 2 steps back one day and the next take 4 steps forward and 1 step back.

As a parent, don’t dwell on would have, could have or should haves. Focus on the here and now and do your best to plan for the future. Take mini moments for yourself. Don’t feel guilty for allowing your child to have time with a preferred activity. Learn to pick your battles. Some battles aren’t worth the energy. One of the best pieces of advice I can give is to be consistent and learn that fluid routines will help. If your child has a food aversion, feed them what they will eat today because tomorrow it may be a struggle to find one food they will eat.

As for taking care of yourself, let go of the guilt or anger. Focus on things for yourself, a cd or book that you can unwind with. Take moments to yourself; even if that moment is shopping for groceries by yourself or locking yourself in the bathroom with a book. I need you to know, love yourself above all. They do hear and observe us even if you don’t think they are. They may not be able to tell us they love us, hug us or look at us but they do love us in their own way.

Above all else, cling to the successes, happiness and love when they are screaming or yelling that they hate us for taking and making them do a non-preferred activity. It’s OK to get frustrated and want to walk away. It’s OK to pause, take a few deep breaths and regroup. I used to tell Em that mommy just needed a timeout. Just remember to come back. If you don’t fight for them or be there for them, who will? Just like everyone else traversing similar paths, you will find your way too.

Each day is a new day and when you least expect it your child may blow you away when they overcome an obstacle. A diagnosis doesn’t define who your child is; they do. Above all else, love them.

Love,

Jennifer

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