A Spectrum of Identity: Autism and Gender/Sexuality

In the early hours of June 28, 1969, the police raided Stonewall Inn, a gay club in Greenwich Village.  Fueled by constant harassment and discrimination, bar patrons and neighborhood members refused to disperse, and the situation quickly devolved. A quick police raid sparked 6 days of protests and clashes that would then become the catalyst for political activism in the gay rights movement.  Numerous gay rights organizations were created as a result (for example: Human Rights Campaign, GLAAD, and PFLAG). Pride Month is celebrated every June in the United States to remember the Stonewall Uprising, celebrate LGBTQ individuals and their stories, and bring awareness to the struggles the community still faces today. Autistic Pride is celebrated every June 18^th. 

According to the Center for Disease Control, suicide is the 2^nd leading cause of death among young people.  LGBT youth are 4 times more likely to consider suicide, plan for suicide, and/or attempt suicide than their peers.  Another CDC report indicated that approximately 29% of LGBT youth had attempted suicide compared to 6% of their peers. The Trevor Project estimates that 1.8 million LGBTQ youth between the ages of 13-24 seriously consider suicide in the United States each year.

The Human Rights Campaign surveyed 10,000+ LGBT youth between the ages of 13-17 and found the following:

• 42% of LGBT youth indicated that the community that they were living in was not accepting of their gender identity or sexuality.
• LGBT youth were 2 times as likely as their peers to have been physically assaulted.
• 26% reported that the biggest problem that they faced was not feeling accepted by their family, trouble with bullying, or fear over coming or being out about their identity or sexuality.
• 73% of these youth felt they could be more honest about themselves online than in their face-to-face relationships.
• 92% reported hearing negative messages about being LGBT with the most common sources of those messages coming from school, the Internet, or their peers.

Although no particularly accurate number exists, a 2017 Gallup survey reported that 4.5% of Americans identify as LGBTQ.  The challenges for young people who feel unsupported by their families, peers, schools, and/or communities are evident.  I mentioned that June 18^th is Autistic Pride Day, but how prevalent is the intersection of the autism spectrum and the gender/sexuality spectrum?

According to a growing body of research, the autism diagnosis is far more common in the transgender population than the wider general population.  De Vries et al (2010) found that 7.8% of the trans population also had an autism diagnosis compared to .6-1% of the general population.  There has been some research that has looked at autism compared to conditions such as ADHD and neurodevelopmental disorders such as epilepsy and research that has theorized possible links between autism, autistic characteristics, and gender identity.   For example, in 2020, an article was published in Research in Autism Spectrum Disorders that examined the intersection between autism and transgender identity and the implications on mental health.  The trans community has high rates of depression and anxiety while depression and anxiety are also the two most common comorbidities with autism.

Consider that in one study of 372 adults with autism, 66% reported suicidal ideation, 31% reported depression, and 35% reported detailed plans for suicide or suicide attempts.  Now combine that with the statistics for the LGBTQ community.  The Research in Autism Spectrum Disorders research article concluded that while anxiety and depression scores were higher for both autistic individuals and trans individuals than their counterparts, the highest levels of depression and anxiety were found in those individuals who were both trans and autistic.

One potential explanation for the increased anxiety and depression is because having a diagnosis of autism can make accessing support very difficult for LGBTQ individuals. Many services for trans individuals require a gender dysphoria diagnosis; those unfamiliar or inexperienced with working with autistic clients may mistake explanations or communication difficulties. One gender identity therapist summarized the challenges by stating that a gender dysphoria diagnosis requires lots of transitions, flexibility, and self-advocacy, which may be the exact skills that are most challenging for an individual on the autism spectrum.  Those challenges, though, don’t negate the individual’s reality, which is why in 2017 several prominent psychologists published their clinical recommendations that:

• Children and adolescents presenting at gender clinics should be screened for autism spectrum disorders
• Individuals with autism spectrum disorders should be screened for gender identity concerns, such as gender dysphoria, which is the medical term for when one’s biological sex and perceived gender do not match. 

These clinical guidelines were made on the recommendation of 22 specialists including pediatricians, psychiatrists, and endocrinologists.  

What should a parent, family member, or friend do once someone expresses that they are on this double spectrum, the autism spectrum and the gender and/or sexuality spectrum?  In May 2020, a group of transgender autistic young people along with clinical experts released the following Nothing About Us Without Us recommendations:

• Help the individual build a community: for a positive self-identity it is crucial to be surrounded by and know others who are both transgender and autistic. 
• Find gender diverse role models and/or neurodiverse role models
• Gender style coaching may be crucial for individuals who are on the autism spectrum; these individuals can help navigate autism-related sensory sensitivities, and problems with planning and social understanding that are unique to the LGBTQ community that individuals on the ASD spectrum may miss or not understand.

Additionally, experts recommend that family and friends:

• Validate the individual’s disclosure with empathy and understanding.
• Ask what the individual needs or would like to do—don’t make assumptions.  The gender identity and sexuality spectrum is as individual and unique to each individual as the autism spectrum.
• Be an advocate for your child within your family, the healthcare system, the school, and your community. 
• Seek support from an expert who is versed in the intersection of neurodiversity and gender/sexuality.
• Be kind to yourself and recognize and admit that you will not have all the answers immediately. 

    Additional Resources

•      ASERT Resource Guide
•      Children's National
•      The Trevor Project
•      Twainbow 
•      Scholastic Book List
•      Welcoming Schools Book List

     

Bullying: What Conversations Are You Having Today?

Last Sunday we were on our way to try family pictures.  There were a lot of things to talk about: don’t argue with your siblings during the photo shoot, remember photographers sometimes say silly things to make us smile, please don’t correct the silly statements, yes you can have the iPads with dinner, remember no fighting, please don’t mess up your hair until after the pictures, remember what I said about arguing, yes you do have to pose with this family. And then the phone rang, and an email came in, and we got notifications that we had new text messages…all from the school’s alert system.  The kids were confused as the system is most commonly associated with winter weather announcements, but this time the middle school principal was letting families know that a secondary student in the district had unexpectedly passed away over the weekend. Counselors would be available if anyone needed to talk. It wasn’t the conversation that I wanted to have. 

Over the course of the week funeral arrangements were made and shared, an obituary was posted, and details made their way through our small community that a young life was lost as a result of suicide. As more students talked it became apparent that this young lady had been bullied.  She had tried so many things, but the bullying wouldn’t stop. Even in her memory, the bullying has continued as it as recently come to light that a cruel joke about her passing has been circulating throughout the school. Several of the perpetrators have been identified and the school has doled out punishments.  Explaining that her passing was at her own hand and then asking if they have heard the joke, wasn’t a conversation that I wanted to have with my children. 

Let me be perfectly clear, neither I nor my children know this student or her family; however,  that doesn’t keep me from being heart broken and physically sick. She was 13 years old--I have a child who is 13 years old.  She spent last summer raising money to help a litter of kittens--my oldest son spent last night having a sleepover in the family room with our most recent litter of kittens.  She was bullied--several of my children have experienced various degrees of bullying because they are or do things differently. I, like I’m sure this young lady’s family did, can tell my kids that fitting in isn’t all that important and that really everyone is born to stand out, but when you are in middle school, isn’t belonging really everything?  I’m years past my middle school days, but I still vividly remember the moments of belonging and those when I didn’t. Don’t you? She had siblings who adored her and I’m sure they are lost wondering what they could have done differently. For all the arguing that they do, I can’t fathom what my own children would do, think, or feel if they lost one of their siblings, particularly under these circumstances. That isn’t a conversation that I want to have with my children. 

I continue listing what our families have in common, but the bottom line is that this child could have easily been one of mine. Or she could have been one of my nieces or nephews. Or a neighbor’s child. Or a friend’s child.  Or someone that I did know more intimately than sharing a hometown address. Sadly, her experience isn’t unique: 

• In the past three years, teen suicide has increased 25% in adolescents ages 15-19
• Suicide is one of the leading causes of death for adolescents ages 10-24
• 1 in 100,000 children ages 10 to 14 die by suicide each year
• 7 in 100,000 youth ages 15 to 19 die by suicide each year.
• Bully victims are between 2 to 9 times more likely to consider suicide than non-victims, according to studies by Yale University

According to stopbullying.gov, in 2017 approximately 20% of students in the United States ages 12-18 reported experiencing bullying, and 19% of students in grades 9-12 reported being bullying on school grounds the previous school year. Almost 30% of students in the same study reported bullying others. Interestingly, the research found that when bystanders, staff or students intervene, the bullying stops within 10 seconds 57% of the time although the report didn’t mention if that was a temporary or long-term solution. 

When you look at the statistics, these children are or at least should have been our responsibility.  But that isn’t a conversation we want to have; it is too hard, too sad to think about, or bullies are just a fact of the world because after all they have always been around. But then one day the statistics get a little closer to home or they have a name and face that we recognize and we wonder why nobody did anything. But who do we think is going to do something if the something doesn’t start with us? I get that the problem is multi-faceted and there isn’t an easy solution.  Maybe instead of focusing on the big picture, we can look at the smaller solutions that often start with the conversations that we can have.  There is a big difference between normal kids-will-be-kids behavior and kids being bullies.  We also need to stop accepting bad behaviors from parents in the drop-off line at school, teachers in the classroom, aides in the lunchroom, and coaches on the practice field.  We need to label the behaviors what they are—bullying, and we need to demand that they stop. It’s time we have the conversations regardless if we want to or not because kids are dying. 

In the last 48 hours in my house, we’ve talked about what happened to this young lady, we’ve talked about feelings, and we’ve talked about how to ask for help if we aren’t okay.  We’ve talked about how to stand up for others even if it isn’t the popular thing to do. And we’ve talked about how to take yourself out of a situation even if literally running away from a situation is necessary to keep yourself physically and mentally healthy. There have been a lot of: “Mom I don’t want to have this conversation,” but we’re still having it.  

We’ve also been talking about how to check your behaviors to make sure that nothing you are doing is contributing to bullying.  And that has yielded a whole other round of mother I don’t want to have this conversation.  The conversations haven’t been fun and there have been tears on both sides.  If I’m completely honest it isn’t the conversation that I wanted to have either, but I’m in a battle to keep my kids alive despite the statistics so I will do what it takes. What conversations are you having today?

Elf's 7th Birthday

Dear Elf,

Yesterday was your 7^th birthday and without a doubt, I can tell you that we love you to the moon and back.

We were in Kentucky looking for a place to live when I got the phone call for our interview with 4 Paws For Ability which determined our eligibility to fundraise.  A few months later, we moved out-of-state, away from friends and family, and started the crazy fundraising journey.  Thinking back, I did not ever really focus on how much money we needed to raise. We were fortunate enough that the right people heard our story at the right time and decided to help us fundraise; a year later we were finished and waiting for the day that we would meet you.

Fun fact, we were supposed to be in a spring class but I decided to call 4 Paws and ask if we could have a summer class because of school and work and life.  Thankfully, we were early enough in the program that they did not have the same wait times that they do now and we were moved to a summer class.  Here is the thing, someone else had decided you were not the fit for their family and if we wouldn’t have delayed, I’m sure we would have had a super service dog but it wouldn’t have been Elf-super.

Honestly, I do not think we really knew what all you could or would do for our family.  We were scared and more than a bit desperate.  Words like tracking, tethering, and behavior disruption sounded useful and well it was all going to be packaged in a furry package so how could we possibly go wrong?

Then the email with your picture arrived and we were in love.  Your happy eyes and loveable face made us feel like we were truly on the right path and that you and Caden were going to do good things together.  However, the morning we met you, you were a bit more enthusiastic than we imagined and we were a little baffled as to how it would all work.  Turns out you were just super food motivated and frequently became Jeremy’s demonstration dog because you loved to do your work and be the center of attention.  Training was an emotional and tough process but it had nothing to do with you.  You knew exactly what to do, we were the ones who had so much to learn and I continue to be thankful that you were so patient with us.

The first night back at the hotel, you immediately looked for your boy when we put him in the bath.  I remember thinking wow, he does not even want Caden out of his sight, which was very true, but now I know you were also worried about what we were doing to your beloved boy by putting him in water.  You know the water, labs generally love, but you avoid at all costs?

Eventually we all settled into our routine.  You have gone to fairs and amusement parks with us, you have been subjected to cheer bows at dance competitions, and you have reluctantly sat on a boat with us. You have spent a great deal of time in the hospital and never complained about the long hours or late dinner.  You have gone to school, on vacation, been on television, and wow have you been thrown up on more times than I can count (sorry about that but your boy really loves you when he is not feeling well).  The other day someone asked me what services you provided and I am embarrassed to say it took me a few seconds to find the words tethering, behavior disruption, and tracking.  Don’t get me wrong, you do all of those things perfectly whenever asked but you have become so much more than that; you are Caden’s best friend.  And to be truthful, at one time or another, you have been a best friend to all of us when we needed you.

Last July we found a tiny painless bump on you and a quick trip to the vet confirmed our worst fears.  You had cancer.  You needed surgery and we would not know until after the biopsy came back what the prognosis was. Needing to tell Caden what was going on and just generally needing to cope with life until we had clear answers was next-to-impossible.  Thankfully, we were able to give Caden the best birthday present ever—the surgery worked and you were going to be okay.

Confronting the reality that you will not always be with us was one of the hardest thing I have had to do.  So much of who he is and what he has been able to accomplish is because of you.  You are there in the middle of the night when nightmares strike and you are there in the afternoon for much needed hugs and cuddles.  You are the first one on a bed and always in the middle of any celebration that we have.  You have been in our lives for so many moments; losing a parent, bringing a child home, moving, and more life decisions and heart breaks than I can count.  You have also just been there at the end of a long day and have never turned down snuggles.

When we started on our journey to you, I never imagined the impact that you would have on all of us and it certainly never crossed my mind that we would eventually need to say good-bye.  Intuitively I knew that because I have lost beloved pets over the years, but you are so much more than that.  Like any family member, no one will ever be able to fill the gap you will leave in our hearts. 

Until then we will continue to cherish every moment that we have with you and be thankful for every job that you do for or with Caden.   And when the time comes to say goodbye, I hope we can be as strong and comforting for you as you have been for us.  The loss will hurt but I will never regret our decision.  I will never regret you. 

If I could give you one thing on your birthday it would be for you to know that we love you to the extent and depth that you love our boy… all the way to the moon and back. 

Happy Birthday Elfie!

Dear Dad: A Memorial Letter to Gerald F Butler

Dear Dad,

Born May 7^th1937 in Weston, West Virginia you lived the transitions from black and white to color television and polaroid to Kodak to digital photography. You purchased one of the first microwave ovens that came on the market as well as one of the first dishwashers and smoke detectors for your first home in Philo, Ohio.  You gave me my first Commodore 64 computer, Sony Walkman, and you purchased me a video camera to help record memories after the birth of your first granddaughter in 2000. You also got mom a whole lot of kitchen gadgets that I'm pretty sure she still doesn't know what to do with.  On the plus side at least you only had to eat fish sticks the first year of your marriage. 

It is interesting the misconceptions that people have of only children; they often think that we grow up leading lonely lives. They would be wrong. When I wanted to learn to run track, you took me out behind the barns and taught me to run.  You took me to the lake to learn to swim.  Dang, life’s rough when your dad was a former frogmen/navy seal.  I decided to try out for basketball; you played basketball throughout your entire highschool career so you taught me to play. Sorry I didn’t make the team; I hope you weren’t too disappointed. I had more fun playing with you anyways. Oh yea, and we had that cool rope swing that you got the great idea to have swing over the huge embankment.  That was a lot of fun; the whole two swings we got in until mom caught us, and made you take the swing down.  I’m not entirely sure, but I think you got one of those talks that usually made you roll your eyes and grin at me. 

I’ll never forget the night you came home from work and told me that we were moving to Snortin’ Ridge.  I didn’t want to move; I had a best friend and a cool bedroom and a teacher that I really liked (even if she was the reason I was and am a vegetarian).  I also had a playhouse and cool neighbors.  You asked me to come over to sit on your lap.  I could never stay mad at you when I was sitting on your lap.  I always felt so safe and snuggly in your arms.  But you promised me a horse; my very own horse if I was okay with moving.  Okay?  Hand over the boxes, let’s go.  Best yet, a couple of months after we moved and were settled in, Gypsy came home and was the best horse ever.  A year or so later, Moochie came home and was the best pony ever.   I sure wish I would have realized to appreciate them more.  I’d give anything to have a horse and that time with you back.

I guess what I didn’t realize until now is that I was as much a daddy’s girl as Ry was a grandpa’s girl.  I followed you around as much as she did and reaped the benefits and rewards as much as she.  Of course, she like me also experienced the Butler "sense of humor."  We have pictorial evidence of the infamous lemonade tree that you convinced her was the source of her beloved drink but she should count herself lucky at least she didn’t go to high school and ask her science teacher about milking a pigeon like a certain unlucky daughter did.  She also didn’t come home from a date and have the porch light automatically turn on to find a scarecrow body swinging from the porch ceiling—I’m still convinced I got my first scare wrinkle that night. Then again at 16 she is convinced we have to leave Wisconsin and head back to Ohio to find really good cheese.  And in elementary school she was convinced she needed a plan just in case a band of wild high schoolers broke into our house—according to you and her, she was going to hide in the bear cave with her shot gun and some cheese until it was safe to come out.  Of course she would be wearing her boots just like grandpa—I think you got her her first pair well before she could walk but I think I also had my first pair before I could walk from your dad. Then again my dates were treated to being met at the door by Bandit, the rescued racoon, and having to feed her chicken, oreo cookies, and marshmellows if they wanted to get back into their cars. I suppose that that time Dan and I convinced Ryley we were going to leave her with the Medicine Man for a few months was kinda almost similar in an apple truly doesn’t fall far kinda way.

Everyone knows the love story between you and your girls, but what I don’t think most people realize is the connections you had with your boys.  You and Caden had a rocky start.  Caden didn’t respond to the usual Jerry Butler tactics—Caden marches to a different beat---we call that drum beat autism now but we didn’t know that at the time.  For the longest time he was terrified of the back of your head if you had a hat on and the front of your head  without a hat.  But he could tolerate and even enjoy your company if you wore a newspaper, so that’s what you did and in time you two worked out a pretty darn good relationship that didn’t even include newspapers.  He loved the stories about the weasels and eventually was even able to play along in the stories although he never quite knew if the weasel was real or not and honestly he didn’t want to know truth. The magic of the stories was in the not knowing.  His Butler skill is the ability to tell the same knock knock joke over and over a million times and ironically the millionth time he still finds it funny.  He is usually the only one, sound familiar?

He also got your heart dad.  Elf, his service dog, is your Tandy/Waggles/Squeaker/Teddy and every other dog you have ever loved.  He is fiercely loyal to his dogs and his cats.  He reminds me of the winter you were coming home from Western Freight and you heard the faint meowing.  You searched and searched in the bitter cold before finding a tiny kitten stuck in a phone booth.  You knew he wouldn’t last long so you kicked in the frozen door and brought Henry home.  Caden is destined to rescue the Henries of the world; I know you will be proud of him.  

Dad and Teddy Bug

Ryley and Sophie

Caden and Elf

 Butlers and Animals: Might be another one of those family traditions

Jenn, Willow, and Rascal

He told me that he isn’t sad that you are gone because he knows you are really happy where you are cause you can breathe better but he sure wishes you had email.  I agree with the sentiment but I’m much more selfish and miss you like crazy. Email would be nice though. 

Then there’s Sayre.  Sayre has your independence and although he’s only 4 he is going to be like you in that he’s going to be able to fix anything or at least tear apart anything that he decides to.  He also shares your love of anything with wheels.  I think if he was allowed he’d have a motorcycle but kinda like mom wouldn’t let you have another motorcycle after your really really really bad accident, I’m trying to prevent his dad from even letting him have a three wheeled scooter but......

  He has no fear just like you. Sayre talks about grandpa’s house and his tractors all the time.  You’ll always be his John Deere Green grandpa and I’m pretty sure that’s not a bad thing.  I'm also pretty sure he'll never read directions nor think he needs to and I'll withhold judgement on that one because just like you, he'll never listen anyway. 

I wish you could have met Emeri, but I promise she will know you dad.  I’m going to make books for the kids and pillows out of your flannel shirts for them.  Please don’t roll your eyes at me like that—I’m going to use my sewing maching so you and grandma Butler should be pretty happy at the moment, assuming I don’t sew myself into the shirts or anything ridiculous like that.  Just promise me that you’ll visit us dad and maybe help us in China because I’m nervous.  Emeri has had a really hard life and you were always so great with kids; we could really use your loving touch to make her feel safe.

As for mom, she misses you a lot but she's strong like you and she's going to be okay.  You two had a pretty amazing marriage.  You set the bar kinda high; I hope Dan and I are making a family that you are proud of.  I wish I would have known to appreciate and cherish time together sooner dad.  I wish I would have spent less time as a kid and young adult being selfish.  I wish my kids would have known to listen more.  But as I read at grandpa’s funeral, that’s the way of life, isn’t it.  And I know we had a good one.  I would do anything to be selfish and ask for just a little bit more time together but as you would say we get what we get and now it is time to just keep on truckin’ so I’m going to try dad.  I’m going to try to be the person that you would want me to be as a parent, as a wife, and as a daughter.  I’m going to try to take care of everyone dad.  I know I’ll make mistakes, because I’m just not as strong as you but I promise I’ll keep on truckin’.  Over and out rubber

May 7, 1937-January 19, 2017

duckie. 

Love,

Frog

A Guest Blog from Calormom: From Broken Dreams to Healing Hearts

My dad left when I was three years old. I saw him on and off throughout my childhood, but it has been 20 years since I have had any contact with him. Last week I received a phone call that changed everything. If you were here and I had the chance to say to you all the things I have wanted, this is what you need to know.

I have no memories of when you and mom were married. After the divorce you were supposed to have my brother and me every other weekend. It didn't take long before you would call mom and ask her if she could keep us on your weekend because you had a golf tournament or something else more important to you than us. Mom finally told you that she would be happy to have us all the time and you could just call if and when you wanted to see us. Needless to say for the majority of my childhood, the phone didn't ring too often and we only saw you once or twice a year. The weekends at your house were not fun because you married a woman that despised children. You would take my brother golfing and leave me behind where I was either bored or being told to be quiet. The only happy memories I have are the few trips we took to my grandmother's house. She lived in the woods where deer would walk right up to the house. She would cook and sing silly songs. She was a remarkable woman. As we got older and went to high school we barely saw you. The visits were always awkward because you never got to know who we were. They became more and more infrequent and then they stopped. We lost all contact with you and your side of the family. 

Despite the fact that I didn't know where you were for 20 years, it still came as a shock when I got the phone call that you had passed away. I still burst into tears as if you had mattered to me. As ridiculous as it sounds, I always held on to the smallest bit of hope that you would come back and apologize and want us in your life. The news shattered that hope. I felt empty and sad. My head was spinning with emotions and questions. It took the medical examiner four days to find my brother as next of kin because we meant nothing to you. There was no trace of us in your house. They gave us the phone number of your sister, our aunt. We both were so nervous to call her because we had no idea what she would say. She was so thrilled to hear from us and we found out so many things about you. However, most of them were bad, and she had no information that helped me understand why you didn't love us. She didn't understand either. She is nothing like you. I came to the conclusion that you didn't have the capacity to be a dad and love us.  You couldn't even love yourself. 

Over the years sometimes people would ask about you in casual conversation. I would tell them I didn't know where you were, and that I didn't care. But I realize now that was a lie I told myself. I did care. I always cared. I always wanted to have a dad that loved me. I have spent my whole life wondering why you didn't want a relationship with us. At every wedding I have ever been to, I would cry watching the father/daughter dance. On every Father's Day I would feel the void of what I wasn't celebrating. I often watched dads interact with their children and felt that twinge of pain. It didn't consume me, but there was always a nagging tug on my heart. In case you were wondering, my mom did an amazing job raising us. There were times she worked four jobs to make sure we had food to eat and clothes to wear. She always wanted to be a mom, so she made up for all that we didn't get with you. I guess you never wanted to be a dad. It was your loss and you missed out.  I grew up to be honest, loving, funny, empathetic, passionate, and respectful. I am a dedicated and amazing mom. I am everything you were not.

When I became a mom, I felt sorry for you. Now I had a child that you would be missing out on too. They say you don't know  real love until you have a child. I know you don't know what that felt like, but it's the best feeling in the world. My son is a piece of my heart that walks and talks and laughs. He constantly makes me a better person and I seriously don't know how I would go on if something happened to him. Maybe if you had spent time with us, you could have been a better person too. Children have a tendency to do that. I don't know how you went through every day knowing we were out in the world, yet acting like we weren't. My husband is a wonderful man and an amazing father. He will teach my son how to be a man.

When people have asked me how I am over the last two weeks, I just smiled and said "okay." How do I explain someone like you? How do I explain what you've done? It's a conversation I didn't want to have over and over again,  so I just pretended I was okay. I know I need to forgive you in order to heal myself, but it's going to take a little time. I won't share everything I found out about you, but I'm angry. You stole money from your own mother. Who does that?!  You lied to everyone. You told them you had a relationship with us when you didn't.  Every time they would ask you for our contact information you would tell them you would get it to them but you never did. I don't know how you looked at yourself in the mirror. Your choice to avoid us was yours, but you didn't have to keep us from the rest of your family. Your secret is out. We know the truth now and we will help each other move on. Did you feel guilty when your mom passed away and you knew we wouldn't be able to come say our goodbyes to her? Did you ever think twice before you lied to your family? Did you ever start an email to us and then change your mind? Did you ever care at all? I'll never get the answers I need, so I'm going to have to let it go. 

I have spent the past few days getting to know my aunt and my cousins. They are awesome and we are all so disappointed that you kept us from each other. But don't you worry, we will make up for lost time. We are already planning visits and we have been in touch every day.

After a few days of reflection on this loss, and so many emotions, I know eventually I will be okay. It will take time, but I will get there. I lost my childhood best friend to cancer at age 20 and a couple of other people that meant far more to me than you. This process is not new to me, it's just different this time. I am not mourning you, I am mourning who you should have been. What I have realized since that phone call is the only thing I lost was something I never had to begin with.  And what I have gained is more than I could ever hope for with the amazing family you left behind. I now have a new aunt, three new first cousins, and ten new second cousins. You took so many years from all of us.  I have closure knowing you can't ever take anything else from me again.

Please join me in thanking Tracy for sharing her experiences, feelings, and insights with us. 

Dear Elf

Dear Elf,

Happy Belated Birthday!

I don’t think it was a coincidence that you were born during autism awareness month.  If there was ever a blue-eyed boy with autism who desperately needed a friend to help him learn the ropes of the world, it was Caden.  Before we met you, leaving the house was hard—like really, really hard. Open spaces were overwhelming for Caden, and he usually resorted to flight in places such as parking lots or fields.  I lost count of the number of close calls that we had in parking lots.  When we did go out, we tried to keep him in his stroller at cheerleading competitions for his sister because the crowd sizes were so overwhelming for him.  The mall?  Well, that certainly wasn’t even a consideration.  Friends were nonexistent and transitions were a nightmare.  We won’t even mention sleep because it just wasn’t a thing in our household.

Then you came into our lives.  You wiggled and wagged and exuded so much energy that morning we first met you that I had a moment (and I’m embarrassed to say this now) where I wondered how in the world you were going to possibly offer any kind of calm or stability to our boy.  Our first night together at the hotel, though, you went into the bathroom to watch his bath and never hesitated to jump on his bed when he laid down.  And from the moment we drove home after 4 Paws graduation (and he threw up all over you---sorry about that) you two have been together.    

  

You have so kindly accepted all of our cats (even the ones who like to bathe you) and every dog we have brought into the house no matter how ill-mannered or undignified they act (seriously the puppy will one day mature…I think).  When your boy is doing well, you have provided much needed love for Caden’s sister and you have helped our youngest work his way through adoption trauma.  You haven’t hesitated to try to help a stranger in need in the doctor’s office, the school, or where ever you are and are needed.  And sometimes late at night before you retire to Caden’s room, you spend some time and kisses making sure that we are okay too.

You’ve been a pillow, an Ipad holder, a stuffed toy fetcher, a blanket, and a best friend.  You’ve helped Caden explore the world with you safely by his side, and when he’s wandered (that toy store incident was totally my fault because I misread your “get a clue lady, the kid is leaving” message for a “hey I’m a dog and gotta go potty message”..sorry about that) you have safely located him no matter the weather, the location, or the circumstances. 

Without a question you know everything you were trained to do and you do all of your tasks well.  I’m grateful for your ability to disrupt behaviors, ease transitions, provide sensory input, tether, and track.  And if that’s all you ever did, I would forever be thankful for you.  But you are so, so, so much more than that to Caden.  You are his best friend—you are the one who is with him in the middle of the night and he has a bad dream or first thing in the morning when he wakes up and is still disoriented from sleep.  You’ve walked into hospitals and educational settings when we couldn’t go with him.  You have loved him unconditionally and for that I will be eternally grateful for you. 

To be honest, I don’t much like thinking about your birthday because it means you are getting a year older.  But no matter how painful our final parting will be someday, I will never regret our decision to bring you into Caden’s life. 

If I could give you one thing on your birthday it would be for you to know that we love you to the extent and depth that you love our boy.  And that’s pretty much all the way to the moon and back.  Thank you for helping us write Caden’s tale.

Love,

Caden's mommy

Guest Blogger Tracy Miranda: Walk Beside Me, Be My Friend

You might know this guest blogger as Calormom on Twitter.  She is one of my best friends and I am so honored to be having Tracy Miranda sharing her son's experiences of living on the spectrum.  Tracy is a loving mother, wife, school employee, volunteer in her son's classroom, and consultant for Origami Owl.  

Don't walk behind me; I may not lead. Don't walk in front of me; I may not follow. Just walk beside me and be my friend.   ~Albert Camus

April is always a difficult month. Every year there is a new hope that the autism community will come together and shed new light on our cause. Yet, every year there just seems to be more fighting and less understanding. Pro vaccine vs anti vaccine, awareness vs acceptance and even fighting over the color blue and the puzzle piece. I wanted to write an inspiring piece about how we need to respect each other and how our opinions are our own. I have to believe that no matter who chooses to support what, at the end of the day each parent believes they are doing whatis best for their child. Who am I to argue? I decided instead to write about a different kind of inspiration. My son and his best friends who are changing minds about autism every day.
When we first received Conor's diagnosis it was the month before his third birthday. He had been in early intervention since he was 20 months old due to speech and fine/gross motor delays. He went five days a week for over a year before he received his diagnosis as he was getting ready to transfer into the school district. He was then in a pre-k class for a year and a half. He learned a lot and made big improvements. He spent the first year playing next to the other kids but didn't interact with them much. At recess he would walk the perimeter of the play yard and never try to play a game with other kids. When he became more verbal he could name the kids in his class, but didn't play with them much. There was one exception, a girl named Bella. They often stuck together and tried to play together on play dates. But she was a year older, a little more advanced, and it was obvious he didn't really know how to play yet. He followed her around a lot and it was the first time we saw a connection to another peer. They would hold hands, dance together, run, play and she would try to sneak a kiss now and then. Since she was older, she moved on to kindergarten and they saw less and less of each other. She has since moved out of state so they don't see each other, but they still love seeing each other's pictures and hearing stories about how they are doing.

He had made so much progress in his pre-k class that the next year he transferred to a special day class in our district specifically for high functioning kids with potential to mainstream. It was there that he met the friends that would change his life, Eli and Lilly. Eli had actually been in the same early intervention program as Conor for a few months. However, neither of them had the skills to be friends back then, so it was almost like they were meeting for the first time. After school when we picked the kids up, the other parents and I soon realized this was something special. We planned a couple play dates and the kids always had a blast. We used to marvel at their progress when we watched their friendship blossom. None of them had ever connected to other children like this before.



That first school year, they did so much together. We had more play dates than you can count. They went to the zoo, went on hikes, went to restaurants and went swimming. They went to the pumpkin patch, celebrated Hanukah, Christmas, birthdays and saw the the Easter bunny. All the while, sharing laughs and making memories. Last summer our families went on a weekend vacation together and the kids had the time of their lives. We stayed at a vacation home of a friend of mine. The kids had been talking about having a sleepover and we told them they were a little too young still. This was the best of both worlds. The kids got to dance in their pajamas together and have movie night, yet still sleep in their separate rooms. It was a magical trip.

This past September Conor and Lilly moved on to kindergarten and Eli just missed the age cut off. We were worried that Eli would be devastated that his friends wouldn't be in his class anymore but he has thrived. Conor and Lilly are trying to make new friends but they do struggle. They don't know what to say or how to act.  One of Conor's classmates came up to me one day and said "Conor's being mean." I told her that Conor doesn't really know how to be mean and asked what he had done to her.  As it turns out, she was upset because he told her she couldn't climb up something and, since she could, she didn't like his remark. All of them have some trouble connecting to their neurotypical peers. If he had said that to Lilly, she would have told him he was wrong, and then shown him. She wouldn't have thought another thing of it. The connection between these three friends is undeniable. There is a level of comfort and understanding they have with each other that can't be duplicated. They all have sweet dispositions and love to be silly. The three of them have made such memories that I know will last a lifetime (and not just because their autism gave them ridiculous memory skills). We still have play dates as often as possible and their bond has never been stronger. We recently went back to see the Easter bunny and it was the first time in a little while that all three of them had been together at the same time. They hugged each other, danced and played, and walked through the mall holding hands.

I wanted to share their story because I want to give hope to those who may need it. Here are three children on the spectrum who are proving people wrong. They have a bond like siblings; they fight and love like brothers and sister. They do love to push each other's buttons and can certainly make each other mad. None of them have siblings of their own, so we feel that's one of the reasons this friendship bond is so strong and important. They are learning that sometimes one of them needs a moment to be alone, and that's ok. They are learning to ask how to help each other when someone is hurt or when they are upset. They have empathy and genuine love for each other. They are learning to share, take turns and compromise. They are learning that time apart doesn't diminish their bond. They are proving that autism doesn't define them. The friendship they have is easy, when so many things in their lives are hard. I love Eli and Lilly as if they were my own kids. I hope this is the beginning of a lifelong friendship. I think they're off to a great start.

Guest Blogger Melissa: Best Friends--Actions Speak Louder Than Words

Today's guest blogger Melissa O'Connell Timmer is a beautiful and talented individual whom I have had the fortune of calling friend for many years.  She is a devoted wife and inspirational mother to son Brycen who is on the autism spectrum and daugher/dancing diva Aubree.  In her "free" time she volunteers at her kids' school and works hard year long to raise thousands of dollars for Autism awareness. 

Friends listen to what you say.    Best friends listen to what you don't say.   ~Author Unknown

 

April…the month of the year that many in the Autism community choose to refocus on what is our individual mission within this spectrum.  Some parents/individuals focus on raising awareness.  Some focus on acceptance.  Some want to go off the radar for a while.  Our family chooses to just continue what we do all year long!  Give our son the best life we can and help him gain the skills we feel is important for him to life his life to the fullest.

One of the skills we choose to focus on the most right now is building peer relationships and helping Brycen learn how to play & interact with his peers.  Brycen is blessed to attend a school that encourages integration between the children with special needs and their typical developing peers.  Brycen & I are even more blessed that the last couple years there is an amazing little girl at his school that has given him a boost in this area.

Brycen & Shealin met a couple years ago at the beginning of 1^st grade.  They were assigned to the same general education class.  Even though Brycen only spent part of his day in that classroom environment, it was obvious the relationship that was budding between the two of them.  As the year continued, the teachers/associates included Shealin more into Brycen’s day by encouraging her to be a “peer mentor” to him.  Brycen is nonverbal & uses a communication device throughout the day.  He also can be aggressive at times when he doesn’t know how to communicate or gets overwhelmed & overstimulated.  Shealin understood all of this at the tender age of 6 years old & accepted him for who he was.  It worked out so well for both, that at the end of the year the team unanimously decided it was best to put them in the same 2^nd grade class as well to help Brycen with the transition.  I don’t think any of us could foresee how this young friendship would grow into something even some adults don’t have in their life!

As 2^nd grade progressed, other students & teachers came to realize there was not a Brycen in the general education classes without a Shealin with him.  Two peas in a pod, the ying to his yang, etc.  When Brycen is upset, he tends to be aggressive to those he is most comfortable with.  Shealin is no exception to that.  Yet, she doesn’t get upset with him like many other peers & adults do.  She states how she feels when he hits her and moves on, never judging him, accepting that this is sometimes too hard for him to control.  Shealin knows how to work Brycen’s communication device almost as well as the teachers/associates with him.  She understands that he doesn’t play the way the other 2^nd graders will at recess, and is eager to run around with Brycen in the way he knows how to play.  She can tell the signs of when he is getting frustrated and immediately reaches in to hold his hand, give him a squeeze to help him through, or just whisper to him that it will be ok.

Their relationship has progressed outside of school as well.  Brycen & Shealin are the true definition of best friends.  Shealin is the friend that EVERY child deserves, whether they have a disability or not.  Shealin has a heart of gold, wisdom beyond her years, & never-ending patience.  When Brycen & Shealin are together, there isn’t “Autism” in the equation.  Shealin is an amazing young girl that many older children & adults should strive to be like.  She is not only Brycen’s hero during some very rough years of his development, but she is MY hero as well!



If you are reading this blog post, I hope & pray that your child can have the relationship of a lifetime like Brycen & Shealin have!  I encourage you to talk to your child’s school & discuss implementing a peer mentor program like we are working towards at Brycen’s school for all children with special needs.  Not only is it a benefit to your child…but it’s a benefit to the peers who will be taught acceptance & understanding of those who may be a little different than them.  Let’s move into a new mission and focus on our children!