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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Elopement and Emelie

Autism and elopement feel like they go hand in hand. I see so many reports about children on the spectrum wandering. Some of these reports have happy endings and brings a collective sigh of relief from autism parents everywhere. Others however have the ending many parents dread and have nightmares about. I feel for the parents in these situations and get frustrated by those who don’t understand our lives or theirs and try to pass judgment. These kids can be wicked fast and even if you are aware of their tendencies, it only takes a blink of an eye.

It’s the little things we don’t talk about or rarely see any longer. Em has been a wanderer, bolter, runner, eloper, whatever term you want to assign to it doesn’t change what she is capable of. As she’s gotten older, it’s has gotten better and is less about wandering and more about “escaping” situations in a fight or flight mode. I actually fought with one school over the fact they didn’t see that potential. We had a long discussion that ended in a stalemate. One thankfully that we didn’t have to come back to finish as we moved and she had a different school that understood my concerns.

When she was little we always had to keep a close eye on her. I remember staying in the house with her all the time. The screen latched with a hook and eye and the main doors closed, locked, dead bolted and at the one place chained in place. I felt like a prisoner but I was scared for my daughter. We used to think she was just prone to wandering. I’d be watching her like a hawk and yet I would get distracted by Christian, a knock on the door or a phone call and she would be gone. Thankfully never far but we implemented the doors locked at all times rule. It frustrated Christian to no end.

We lived near busy intersections and streets. There was river that flowed on the other side of one of those intersections. She loved to look at the water and was drawn to it. Fortunately, she never got more than a house or two away. She hated how grass felt on her feet so she never went through the backyard or cut through other yards. Our neighbors were always on the watch for her too. They were aware of her wandering. It was so nerve wracking that at one point we even considered whether or not to attach alarms to windows and doors when she got old enough to bypass our safety nets.

Outings were things I tried to avoid unless someone else was with me. We learned that if we took her to the store as long as someone had her hand and she had her blanket those trips would go smoother in regards to wandering. She hated stores anyway and we only took her if we had no other alternative. If they had a shopping cart, in she went. She would lie down and cover her head. If there wasn’t a cart, we said a quick prayer and made it in and out as quickly as we could. We’d still deal with sensory overload but we could get her home without losing her. Even as she got older, she would still crawl into a cart understanding that this was a safe place for her. She did that until she was about twelve. Thankfully she asked so she could curl into herself with her hood up shutting out the world. We got some odd stares but we learned to ignore them and the comments. Her safety was our concern.

Family functions were something we did and still avoid. Most of them happen in areas we grew up but as times have changes so has the area. We are less familiar with them than we’d like to be in case Em does have a moment of flight. For her that could be triggered by boredom or being overwhelmed by the relatives and the constant questions. I’ve seen her get agitated by too much noise or just feeling unease in the situation. Matt or I’ve always shadowed her or had Christian keep an eye on her.

Things were different a little once we moved here. We were terrified of what was going to happen. Before we moved, we lived far enough away from the school she had to be driven or take a school bus there. She had no sense of direction so she would hide in a corner. She didn’t know how to get home. She never tried to “escape” from that school. We did worry about the running from home. Since the school had never encountered it, when we wrote up her initial transitional IEP from a big elementary school to the intermediate school prior to our decision to move here, they weren’t worried about her running. I pointed out that we lived four blocks away from the intermediate school. Our church was across the street with our Pastor being close too. There were several busy streets and when she took off she never practiced good safety measures. They still weren’t worried. We argued on this point for almost an hour. I finally just let them think that conversation was done so we could move on knowing it was likely we were moving out of the area before school started anyway.

I lost hours of sleep over her safety. When we moved here we still didn’t have the Autism diagnosis. The school here is in a much quieter community with far less of the traffic we used to have, yet still has semis that drive the main road past the schools. The school was still close enough for her to “run” home if things in her mind caused her to elope. We did tell the school she was a runner but we weren’t sure how it would play out in a new environment. They seemed to understand our concerns and managed to keep her elopement and wandering to obscure corners inside school that year.

She only ran from home once that year. It was in October and Christian was afraid for her as he was supposed to walk her to school. She didn’t go far; the backyard. He managed to coax her back in the house and stay with her until I got home. We got him to school late. Em was so upset that I stayed with her at home that day. That happened just after we had gotten her autism diagnosis and were still learning what that meant.

That day when she calmed down we talked about why we were scared. Unlike so many kids like her, she was starting to be self-aware of the triggers of her wanting to “escape” or meltdown. She also could feel herself starting to “slip away” in those times. So she helped us established some ground rules. HOME = Safety. She can run through the whole house. She can find a room to be “safe” in but she is NOT to run away from home. She has to STAY INSIDE. I figured I had nothing to lose. She now tends to run to her room and slam the door shut. She’s been known to tell or rather scream at us on those days: I need space. Leave me alone. In time she is able to come down and discuss what happened as best as she can. It’s taken a long time for her to recognize the sign of when an imminent meltdown or the desire to “escape” and run is starting.

Unfortunately she employed that same technique at school. She’d run and “hide” in the school. They finally got her to understand she can’t do that there. She understood as much as you can tell/expect of a child on the spectrum to understand when they are in fight/flight. They gave her a few options. And up until the one field trip towards the end of the school one year, she followed those rules pretty good. However, the minute they took a safety net away in her eyes, it was no longer a “safe” environment, she was coming home. She ALMOST left the school grounds. She was outside the building. The school saw what we’d seen all along. Em has the potential during a sensory overload/meltdown to run. We’ve put new safety measures in place and while she occasionally will take off, she stays within the school and often the same areas. It’s not ideal to have an eloper take off but if they go to the same areas it’s easier to know they are safe.

Em has gotten better as she has gotten older. It has taken time and resolve. We’ve put so many safety nets in place to avoid the fight or flight urge and sensory overload meltdown that may trigger it. She is not out of the woods though. If she gets angry or frustrated there is always that possibility that I have to consider. We do our best. These kids are strong. They are smart. They are able to disappear of an eye. Even the most proactive parents and caregivers can have situations arise that can change everything in a heartbeat.

The lesson I take away from reflections like this are how things sometimes change yet still remain the same. Em still has the potential to be a runner. We still fear for her safety in those moments. As she gets older though, we cautiously observe to see how she handles situations and are ready to “jump in” if she needs us to; whether she likes it or not.

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Turning Point

No. Touch. Hurts. Those three words will forever haunt me. This image forever burned into my memory. The three words gasped by my daughter in the middle of a meltdown as she pushed us away. It was THE “AHA” moment. The look on her face that went with her physical pain. Her crumpled body huddled in a corner eyeing us warily as we tried to calm and console her. The first time she was able to tell us something she was feeling in a meltdown and it took every ounce of her concentration to do so. Then she was gone back into the abyss of a sensory overload meltdown.

All I could do was wait for her to come back. The more I tried to soothe and calm her with my words from a distance, the more she screamed and rocked and cried. Eventually I just sat there within arms distance hesitantly watching her. As her mom, I felt like I failed her. I failed to understand her. Here she was. Eleven and a half years old and everything I’d ever done in these situations actually caused her physical pain. I wanted to cry with her. Instead, I observed her.

What I noticed was as she was able to slowly regain control and regroup she had a different look; a look of sheer exhaustion and fatigue accompanied by a look of defeat. The rocking slowed as the sobs subsided. Until she was perfectly still and quiet and I didn’t know what to do. I just sat there watching her curled into a ball on the floor in a corner.

I waited for her. I waited for her to make the first move. Afraid that if I did it’d inflict more pain. I didn’t understand. I wanted to understand. I NEEDED to understand. I needed to know how to protect her so that I didn’t hurt her. That’s my job, to protect her. She was so exhausted. She could have slept in that corner all night. I would have let her.

She didn’t. She wearily crawled over to me and laid her head in my lap. She needed me. She wanted me. I didn’t know what to do, so I just did what I always did when she did that. I rubbed her back and brushed her hair back from her face. I didn’t speak first. I refused to speak first. I felt when the tension left her. She finally looked up at me, a fresh round of tears threatening to spillover and she told me she was sorry.

She thought she hurt me with her words. I was hurt but not by her words. We struggled to communicate through the conversation but eventually we both got to the same point. We learned so much that night; we learned that we had to let her regroup and calm down preferably alone in the dark however long it took.  Otherwise all the talking, soothing, hugs and touch, all of it would cause her physical pain. Some kids are like her. Some crave some or part of those things in that timeframe. Others may crave just the opposite.

Communication changed that moment. It took eleven and a half years but she found a way to break out of herself to communicate her need in that moment and it changed how we dealt with those moments. It was so intense but it led to other moments. Some quicker than others but we slowly learned what Em needed from us. It didn’t happen overnight. She still is telling us things to better help her.

She can verbalize her needs most of the time now. Using calming techniques she’s learned. Some of it is she has gotten older and matured. She occasionally gets stuck sometimes finding the words and has found that texting or messaging us is easier. She can type it out, read it, think through it and then either send it or edit it. Sometimes when she is talking to us you can see she’s trying to get an idea out. The clear look of determination and frustration is evident on her face as she struggles to get her meaning across. We used to try and help her by offering “ideas” of what we “think” she is trying to say. Often though, that ticks her off and frustrates her more. We are still learning to let her flesh it out as she goes.

The key for Em and many like her who have a form of Autism is finding a way to help them communicate.  Communication isn’t just about words and speaking aloud. It includes body language, sign language, using technology and adaptive devices. It means figuring out how to help them unlock their potential. Not all kids want to talk and communicate but we need to ensure that they have the tools to tell us what they can.

She still struggles and she may always struggle where communication is concerned. Yet, every day that she reaches out and communicates a need, I remember this particular day. I’m grateful for a moment that drove home that point of her needs are different and we need to figure them out. It was the keystone of how we changed parenting her and coming into her world. It also reminds me how little we actually understood her until she started to tell us about herself.

That was the night we realized she was struggling to come into our world and we would never know or fully understand all her needs until we came into her world and learned who Emelie was. So we came to her. We let her show us her world as she could. She’ll now come out of her world and shell, knowing that there are people who understand her and her view of the world. She also discovered she isn’t alone in her struggles and obstacles. Em has learned to embrace who she was, is and will be and while she still has some rough days, overall has learned to be content with that knowledge. We are here for her on the days she isn’t. It’s what we feel it means to be family. Baby steps and standing by each other.

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Letting Go of the Past

I’m ending the year letting go of the past. I’m starting the year with hope and new beginnings. One of the things though, I really need to address. It’s the one subject that I find difficult to talk about; how I didn’t follow my gut and PUSH harder or get second opinions when Em was little. We knew she was unique. We knew she had some delays and struggles ahead of her but until the day she “broke” all the professionals told us, she was “fine” and “normal”. We were silenced with the idea that we were “helicopter” parents who were overreacting.

When Em was a baby, I had a nagging feeling that something didn’t fit. I had a gut feeling my baby needed things she wasn’t getting. I even quit my full time job when she was a toddler to care for her better. Only to feel that feeling grow more intense and challenge everything I believed. Yet her doctor would tell me that it was me. I was “tired” or just “anxious” because Christian was such a mellow baby and child.

This child had some serious red flags. Yet because she was somewhat a social butterfly with her own language she managed to fall into the chasm of unrecognized autism. She chirped and squeaked. And Christian, Matt and I all became interpreters. She struggled with eye contact. She was a literal thinker. She didn’t sleep and when she did it was short and brief. Emelie had severe food aversions. It was more than being a picky eater. Yet, we were told she’d outgrow it and when she didn’t that it was just “her” normal. That we were great parents but needed to relax. I didn’t.

She stimmed. We didn’t see it as stimming. We didn’t think it was anything but looking back, she stimmed. She rocked and loved to bounce and swing. She couldn’t calm herself down and self sooth. She needed deep pressure. She didn’t hit her “milestones” on time and she was delayed. Yet, just as we ALMOST went ahead and got interventions, she started to hit them so we figured the doctors must be right and we just were seeing things not there because we so anxious and tired.

School started for her. I was beyond exhausted. Meltdowns were chalked up to “temper tantrums” and she was a “misbehaved” little girl. I cried every day. I thought I must be doing something wrong as a mom and started to slip into a depression. Little did I know that school was setting off the sensory overload and by the time she got to me, she was done and couldn’t take anymore outside stimuli.

She didn’t want to write, color, or work on reading. Yet, still, the experts kept telling us we were overreacting. Then something broke in our family. She broke. It was the best and worst day of my life. It was the worst because of the situation and backlash but the best because finally the doctors and professionals started to listen to us. It was all over chicken nuggets. Or at least at the time we thought it was. She was in sensory exhaustion. The go go go of her school that week and the anticipation of a fundraiser that night that the kids were participating in that was also go go go led to this sensory exhaustion. All she had wanted was chicken nuggets and I told her no. She snapped. She threw her shoe at me and started hitting me while I was driving.

I managed to not get into an accident and got her home. Once home I put her in her room after chewing her out about safety. Which led to more tears and she screamed more. After awhile she calmed down. We had to attend the event so we went ahead as promised. The night seemed to be going fine until right about time for us to go. She got hysterical. Like can’t see the person in front of her crying and screaming. Matt patted her face and she snapped out of it. She then just needed us to leave. Which we did and she slept hard for twelve hours.

Long story short, it ended up with a lot of phone calls and referrals and misunderstandings. Thankfully, people knew us. People knew this wasn’t the Em that they’d known. Yet, the doctors didn’t see Autism. They saw many things but always told me that she didn’t fit the criteria for a spectrum disorder. Even if I pointed out all the red flags every single appointment.

Now at one point, I’d worked with a couple of kids on the spectrum and kept asking because by now, I was trying to trust my gut and I couldn’t let it go. They always found reasons why she wasn’t. My gut kept telling me that she needed therapy. And she did get some occupational therapy but it wasn’t geared towards all the areas she needed assistance with; just some.

They loaded her up with meds that didn’t help her. One med out of ten meds did. She’s only on one original med. An ADHD med. The rest have all changed since her diagnosis changed. We felt so helpless and baffled. Changing meds. Upping doses. Having blood drawn, which was the wrestle mania event regularly for several years. Yet, something wasn’t right.

Teachers started to see it too. Not necessarily the autism but that the meds weren’t helping. More and more, my gut was telling me to look for a second opinion because after four years, Em was still struggling as bad, if not worse, than when we started. Something had to give or she was going to end up hospitalized. It was our nightmare.

We finally did get a second opinion. Em was just eleven and here this professional took me seriously. Looked at the big picture and said, I agree with you. She IS most definitely on the spectrum. I drove home from that appointment in tears. I felt vindicated. I felt Em was robbed of so much time to get therapies that could have benefitted her because she didn’t fit the stereotypical criteria that the other doctor used as her guide. This doctor looked at it from how girls present differently as her area of expertise was autism, bipolar and other youth mental health issues.

The emotions running through me were so overwhelming. Em thought she’d done something wrong. She’s always known her diagnosis. She hasn’t always understood it. And neither did we. But baby steps helped. Changing how we reacted and parented her was the key. Learning how to communicate as a family was where we started. There’s a lot of being patient knowing that we were and still are on a learning curve. Days that we still don’t feel adequate as parents. Sometimes wondering if we’ve “missed” something.

As we walk in this journey with Em one thing has remained constant; our love for her. We’ve never looked at her as less. Just different and unique. We had to learn to see beauty in her as she is not how we want her to be. We needed to come to her in her world and learn how she “works”. Every day is a new discovery. We embraced her autism and looked at it as both a challenge with the way it complicates her life but also as an integral part of her that we needed to accept.

We had to learn as a family to shut out the background chatter. Nod our heads at people who felt we were coddling her and do what was best for her. We had to let people leave our lives and inner circle that couldn’t handle us. We learned to pick our battles. We had to learn to balance. We had to learn what a lonely world it could be. We also learned what a wonderful world it can be when the right people show up in your lives. We’ve had ups. We’ve had some downs.

I liken it to a Cha-Cha. We’re constantly moving. Sometimes forward. Sometimes a step or several back. But we press on. We have to believe in her. Her resilience. Her determination. Her drive. We have to listen to her when she chooses to communicate. While she now can verbalize vocally quite effectively it’s not her preferred method. If given a choice it’s often by text and messenger because she can pause and think before she “speaks”. We have to encourage her interests. Sometimes we have to push her to reach her potential knowing that there is a fine line in the sand of being able to handle something. We also had to learn when it was best to let her regroup and walk away.

I will never have the daughter that I dreamed of. And I’m ok with that. I have the daughter that is better than anything I’ve dreamed of. She is so strong and delicate all at the same time. She’s become who is because of obstacles. She is more than a statistic. She is more than a number. She is more than a diagnosis. She is more than I ever imagined. She fights back when many would crumble and she crumbles when she can’t stand anymore. Only to reform herself into a person she can be proud of. Even if it isn’t right now, someday she can look back and reflect on her own abilities and see that.

She’s not afraid to cry and tell us she scared. She will scream her insecurities and fears out at the top of her lungs for the world to hear. She wears her true persona outwardly with very few masks. She may not have the confidence that the world imagines when hearing that word, but I see Emelie carrying a quiet confidence. Even when that confidence is nothing more than what her obstacles are and her determination to be who she is no matter what.

She’s got this. I’m just here with the safety net watching her learn to fly. Let this year end with the knowledge that we are letting go of the guilt and remorse of not “listening” to our parental instincts. No more what ifs or should haves or could haves. We are letting go of how she fell through the crack. Let this year begin with the knowledge that we are doing the best we can and learning a lot along the way. That we did what needed to be done and we support her as she learns to be Emelie and what that means.

Emelie gets to determine who Emelie was, is and will be. Not us. Not her teachers. Not a diagnosis. Not a label. The choices are hers to make. She gets to define herself.

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