Monday, August 29, 2016

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. 

Friday, June 10, 2016

Would I Have Said Yes?

There is a saying in the adoption community that it is much more difficult to ignore orphans once you have seen their faces and know their names.  I remember sitting in China with a mom who had already adopted several times and she said “you’ll be back here again.”  I kinda laughed and said, “oh I don’t really see that happening,” and she just nodded her head and said, “okay, we’ll see.”

Since coming home from China, we have visited and revisited the idea of adoption multiple times.  We have had some heated discussions while I kept sending my husband link after link after link of children who were available for adoption and that I was convinced were the one.  Thankfully, he was able to see that I was stuck on the idea of adoption, but wasn’t necessarily focused on the child or what was best for all involved.  Finally, one night he said that while he wouldn’t rule out adopting again, it would have to be a one-in-a-million kind of situation. 

Alrighty then, challenge accepted.  I was on a mission to find that one-in-a-million situation.  We sat through orientation for foster-to-adopt programs and spoke with agencies who specialized in second chance-type adoptions.  Every path was met with a barrier, and nothing really felt like it was the right path.  All were delightful paths, but they weren’t the right path for us.

A month or so ago, a social worker sent us an email saying that they had received the file of a little girl who had albinism, and she wondered if we wanted to take a look.  Our immediate reaction was no because that seemed too scary, too difficult, too unknown to us.  But for some reason, we said “sure send us the file,” and we saw “Cora’s” picture and read her story.  We were drawn to her, but the unknowns were just too big.  But once you see their face and know their name….

I emailed another adoptive mom and said we are looking at this file, but her needs seem to be so great.  Individuals with albinism tend to have some level of vision impairment and there was no way I could figure out how that would happen in our house with hurricane giggle monster and the littlest little on the loose.  Before she could respond, though, I was struck with a thought that literally forced me to the ground. 

What if I would have been given the choice to say yes or no before the biggest little and the giggle monster were born?  Would I have said yes to common variable immune deficiency or autism or dysautonomia or asthma after I heard phrases like incurable, failure to thrive, nonverbal, learning disability, chronic pain, and uncertain future?  I wish I could pretend that I would have without a doubt said yes, but I don’t know that I would have.  Those sound so, so, so very scary when you put the words and all of their implications down on paper, and yet in day to day life they are just a part of our tale, a part of our way of living.  Don’t get me wrong, not every day is easy.  This past week we have learned how difficult a combination of autism and concussions are (free tip of the day: a child who is literal will take the name of a product like slip ‘n slide very literally and may end up with a concussion and neck injury), and I haven’t handled all of the frustrations perfectly.  Last month the giggle monster and I both cried at a dance recital because it was hard (I should note that he didn’t do anything wrong; the failures of that day were all my own and I have apologized multiple times to him for the way mommy didn’t handle her feelings and expectations correctly).  Some days are dirty and messy and ugly, but at the end of the day there isn’t any place I’d rather be than with my family. 

I’m blown away by the possibility that if given a choice, I might not have said yes to my children.  That conviction along with more signs from the universe than you want to read about, led us to say yes to “Cora.”  Trust in the plan is the only thing that is going to get us through this process.  We haven’t had years to save money nor do we have funds to draw from this time like we did for the first adoption journey.  We are going to have to put ourselves out there, ask for help, and work our tails off to make this tale end happily ever after.  I don’t know what the next few months look like, but I do know that I am so thankful that I had the chance to be reminded that once you start living life, you rarely have the time to be afraid.  Fear comes in the thinking about and talking about life, not in the actual living.  There have been some stutters and re-starts, but “Cora” it looks like we are on our way to making you a part of our tale!
An invisible red thread connects those who are destined to meet regardless of time, place or circumstance. The thread may stretch or tangle, but it will never break.
~Chinese proverb

Monday, April 25, 2016


C got a new nerf water gun today.  Being an excited 9 year old, he did what any 9 year old boy with or without autism does.  He took it a few houses down the street to show his friends.  I could write an entire post about my wonderment at his ability to walk down the street and back and all of the work that went into making that a reality for him, but that isn’t what this particular blog is about. 

Instead, it is about the fact that after he left, I started to think about a child who was shot by the police because he was carrying a toy gun in a park.  I wondered if I was worried about C carrying the watergun around, but then I soon realized that I wasn’t concerned over the neon orange water blaster.  What I was really forcing myself to think about was the scenario of what C would do if he were stopped by the police for any reason. 

I can see the squad car with flashing lights, maybe the sirens are still on, and the police officer is telling C to stop for some reason or another.  I then see one of three things happening.  C tries to walk to the police officer thinking that he or she is like the officer who comes every month to check his Project Lifesaver bracelet, and it is viewed as an aggressive movement.  Or maybe C immediately drops to the ground in the turtle huddle that he does when the world has become too overwhelming, and the behavior is viewed as an uncooperative movement.  Or maybe C takes off running because he is absolutely terrified of “mad” voices, and he is suddenly viewed as fleeing.  None of these scenarios end well in my mind.  If I’m honest, I can imagine the phone call or the knock on the door where someone is telling me one of my worst nightmares has come true.  I could go on because the details are that vivid in my mind, but that really isn’t what this blog is about.

I need to be really, really clear here—this blog isn’t about the police either.  They don’t know my giggle monster or how beautiful his soul is.  They don’t know he has autism or sensory issues.  They just see a tall kid who could be a danger or a threat, and he isn’t listening to what they are telling him to do. 

This is about my realization that we as parents can’t take for granted that C knows how to interact with the police in a dangerous situation any more than he knew how to ask a question or express an emotion.  Those interactions all require an ability to read and quickly interpret verbal and nonverbal cues in a fast moving environment.  Realistically, that isn’t a skill that naturally comes to a literal thinker.  And if we are really going to do our jobs as parents trying to prepare C for the world, then we need to teach him how to react in those situations.

When the older kids were younger, we played the stop game.  Initially, we played the game with Ry when we were going hiking in the mountains when bears had the potential to be active.  Later we played the game before going to the Badlands where we knew there would be a lot of poisonous snakes and we needed to know that the kids could respond to a frantic NO or STOP if necessary.  I think we’ll do something similar and maybe we’ll even ask a few of our local police officers if they will practice the game with us. 

I’m haunted by the images that my mind created for me tonight, and I’m sure I will revisit those images and that mental knock on the door for days, weeks, even months to come.  I also wonder what else we are forgetting to teach him about the world, and I worry that we don’t have enough time to fully prepare him for everything he will face in life.  I wonder who will be there to think of these things when we are gone.  I wonder if the world will change its definition of normal enough that these concerns won’t even be an issue in another decade or two.  I wonder….I wonder so, so, so many more things than I can possibly articulate.

Of course maybe all the wonderings is my brain’s way of reminding me that we can’t make assumptions; we can’t assume skills or behaviors any more than we could when C was younger. Autism is growing up with him and the challenges don’t stop.  They just change, and it is our job to prepare him to the best of our ability.  I don’t even know if our efforts will be successful or if somehow we will inadvertently create a new phobia or fear of the police that we will have to overcome, but I also know that we can’t do nothing because the images, the sounds, the feelings in my heart and brain are too raw…too real…too painful to just ignore.  

Saturday, April 9, 2016

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.


Caden's mommy

Saturday, April 2, 2016

April: The Candles and Colors of Autism

Last night I lit a candle* to remind myself and others that "children with ASD are eight times more likely to elope** between the age of 7 and 10 than their typically-developing siblings. 48% of children with ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings.***" Last night I lit a candle to remember those individuals who lost their lives in 2015 due to autism related elopement and the devastated families they left behind. 

Tonight I will light a candle to remind myself and others that one 2015 study found that "autistic adults with a learning disability are 40 times more likely to die prematurely from a neurological condition such as epilepsy."  I will light a candle to constantly remind myself and others that the same 2015 study articulated that suicide is now the leading cause of early adults in autism who do not have a learning disability."

Tomorrow I will light a candle to remind myself and others that individuals with autism die every year as a result of malpractice or outright murder. The news stories often forget to focus on the autistic individual who has lost their life. 

Light a candle or chose a color to shine but at the end of the day make sure you have taken the time to start a conversation about autism.  I promise you that someone somewhere--maybe a teen struggling to be themselves, maybe a parent trying to do the best that they can, or maybe a teacher desperate to reach a student that they have been told doesn't have a future--needs to hear your story about yesterday, today, and tomorrow

*Learn more about Jill Smo's candlight vigil event on Facebook
**Elopement (ICD-9-CM V40.31) wandering (aka Flight Risk)
***NAA Autism & Safety Facts
IAN research on Wandering and Autism
Project Lifesaver