Spirit Week 2015

Spirit Week at the kids' school this week has been a lot of fun for us. I'm grateful for the help of a good friend to pull fifteen outfits together for the week. 
Monday was Team Day. Lane was least thrilled about Team Day because she doesn't have a favorite team. Alex was fine with the Packers and Gabriel had to wear his Raven's purple.

 

  

Tuesday was 80s day. Lane wanted to see photos of me in the 80s to make sure I really wore the bright colors we picked out for her. The kids wore their jelly bracelets and 80s buttons. It was a bright day in our house!

Mustache day was a great one day on Wednesday. The kids picked out large, colorful mustaches for their faces, Alex even added an orange mustache to his forehead. Apparently the kids were asked for their mustaches on their shirts and they shared them. They came home with less mustaches than they went to school with in the morning. 

Thursday was 50s day. Alex's teacher named him the Fonz. Gabriel picked out some cute 50s glasses to wear and Lane was adorable in her poodle skirt. 

Friday was Career day. Alex had a tough time choosing what he wanted to wear. He wants to invent a time machine and he wants to be the President also. Gabriel wants to be a veterinarian or a dog trainer. Lane wants to be a doctor.  Apparently they all have high aspirations right now.  You go Mai kids!!

Frostbite

When I was a senior in high school, a relative and I got into a huge argument. It was nothing new. This relative has an abusive, sad past. After smashing my photos in frames that hung on my bedroom wall, the relative told me to leave the house and I complied, though it wasn't willingly.
I had nylons on my feet and no shoes. We lived in the country, on a highway road. I didn't think to grab my car keys and just left the house, probably slamming the door on the way out.
Unfortunately, it was the end of December. The road was sheer ice and the temperatures were frigid. I walked to a neighbors house, which was a country span away from our home. My nylons froze to my feet as I walked, tears staining my face. My nose felt frozen shut as each breath was caught in the cold air.
It was black outside but the stars and bright moon lit the way as I trudged along on the icy highway. My feet began to burn but I didn't know where else to go. I had no money. I had no clothing or belongings with me.
Eventually one relative told the other one to get me. I was carried home but the damage was done. Physically and emotionally, I was damaged yet again.
I spent Christmas Eve in the ER getting crutches and pain medication for my frostbitten feet.

What is frostbite? According to Dr. John Wogan at the Greater Baltimore Medical Center: Frostbite is what happens when exposure to severe cold temperatures reduces blood flow and causes ice-crystals to form inside body tissues, leading to serious, even irreversible, damage. Frostbite can result in permanent nerve injury - primarily numbness or pain - and tissue destruction, even the loss of fingers or toes.
Are there long-term problems associated with frostbite?
Yes. You may develop numbness to the skin and sensitivity to the cold. Severe frostbite can cause loss of the involved body tissue, e.g., tips of the nose, ears, toes and fingers.

No one in the hospital questioned what happened. I don't even know if this would have been grounds to remove me from the home over twenty years ago but no one asked me how my feet were damaged.
I could barely walk due to the blisters covering my feet and I was told that I wasn't allowed to tell my relatives what happened. "Kids" at school whispered. I later learned that everyone believed I had sex in the snow and that's how I got frostbite on my feet. As if I would be so stupid as to have sex in the snow long enough to cause frostbite. Somehow the humiliation of that story was less humiliating than the truth, that I wasn't cherished enough to keep safe. That someone I loved and who was supposed to protect me, did not. The hurt and pain was confounded on my fronts.
Yet I survived, as most people do. I moved on but every year I remember what happened. It took me this long to share this truth. I remember every year because it is this time of year, when it is cold, that I can feel the same burn. My feet scream at me in pain and I have a difficult time walking until they stop the painful tingling.
I told my children this morning that I wasn't feeling well and I needed a little more time to get ready. The truth is, my feet burned with a lessor pain, but a similar one, of 23 years ago.
It still hurts 23 years later but I continue on. I wish I could say that this relative forever wanted to make this wrong better but that isn't the way this story has ended. From this, I know that I never want to be the person who causes this type of pain on someone, especially a relative. My family is loved and I work on showing them every day how wanted and appreciated they are, because they deserve it.

Letter From Mama Bear

A few weeks ago, Gabriel hit another child at school. I was so disappointed in his impulsive behavior and sad that he had to deal with the consequences of his behavior.
When I took Gabriel on his field trip to Epcot, he was thrilled to see two of his classmates, who happen to be twins. He ran up to them excitedly and said hello to them. The mother wasn't smiling and she was unapproachable. She asked me to repeat my son's name and I did. She then launched into a tirade about how much she didn't appreciate Gabriel hitting her son, completely taking me aback, due to the lack of consideration of our children and the inappropriateness of the conversation.
While I am grateful for honesty, a field trip was not an appropriate location for this type of conversation. The conversation then lead to a transitional meltdown for about an hour. Poor Gabriel's mood was dashed after this mother discussed a negative moment with me in front of him.
Gabriel was able to turn himself around for the rest of the day, but as we left, he saw the twins and the mother and had another long meltdown. He expressed his emotions well and it was clear that her comments were a direct cause of his discomfort.
As his Mama Bear, I wanted to yell at her and tell her what a bitch I thought she was for causing such overwhelming anxiety in my child. We all know that he shouldn't hit anyone. No one thinks that behavior is justified or acceptable but her comments weren't acceptable either.
Something softened my heart while I talked to Gabriel and comforted him. I looked at the other mother and she looked overwhelmed herself. I never saw her smile. Her expression was tense.
What she did was wrong but I don't know what is going on in her world. I decided to write a short letter to her in the hopes that she will learn another way to express her grievances. I am unsure if it will be received well but I can only try to reach out to her.

Thank you for voicing your concern regarding an incident that involving our children. I appreciate that you took time to talk to me. I am always available to discuss autism and how it affects my children. I can be reached at 407-764-8585. Please consider discussing issues with me without the children within ear's shot.

As you know, we both have to deal with autism and the issues it creates. We have added stressors as special needs parents. I hope we can work through these issues together and be on the same side. I believe it will make us all stronger. I look forward to discussing issues openly to create solutions.

A little background on Gabriel: He was in chronic, severe pain for a year. (or longer, we are unsure) This affected his behavior and impulse control. I sought specialists and begged for help. He had two brain surgeries this past summer and contracted bacterial meningitis. He was in the PICU for a span of five weeks. (my friend's daughter passed away from the same illness). It took months for him to return to his baseline.

Though this doesn't explain his behavior with your son in its entirety, I hope it sheds some light on what Gabriel has experienced. He has made incredible progress academically, behaviorally, and emotionally over the last six months.

We rarely experience aggressive behavior and we were upset that something occurred. (all I could imagine was another brain surgery and how your son felt) We addressed the situation at home. However, we do not know the antecedent and we were not at the school to witness it.

Thank you again for addressing your concerns.

Sincerely,

Jessica

Think Before You Speak (please)

I have two children with chronic medical conditions.  Their medical conditions affect them most days and it is at the forefront of our daily lives. Some days are more manageable than other days 

After our traumatic summer with Gabriel, we are now facing the same brain surgery for our little 8 year old son.  The ongoing stress and his issues from his medical conditions is a driving force in our lives.  

His behavior and focus are declining. His pain is evident.  He doesn't sleep well and cries often. He screams.  He has become a bigger challenge for his teacher   It is awful to watch and even worse to feel helpless as his parent. 

We continue to take him to specialists.  He tells his story to the specialists and almost begs the doctors to help him. He's 8.  Just 8 years old and suffers from chronic pain already.  We spend a lot of time figuring out medication and insurance coverage while finding the best doctors in our area. 

 I know that I have a few friends who can relate to this ongoing battle and trauma. I've been surprised by the kinds of comments I've heard from people and I'm unsure if they are well meaning or not.  The comments come across as insensitive yet I have to remember that at least these people are reaching out to me because some people don't reach out at all and that hurts   

One comment I heard was, "at least you know what to expect this time."  The positive side of this statement is yes, now I know what the surgery entails and what can go wrong. I also know the fear and anxiety. I also know that things can and do go wrong after surgery.  These complications can lead to fatality. It's a reality for us now, not a faraway possibility   I lived it and I don't want to jump back into the fire again. 

"You can plan better this time".  This was said by someone who didn't help us at all this past summer and that's fine.  However, this statement made me realize that she held what seemed like a lack of preparation against me.  I had less than two weeks to prepare for BRAIN surgery on my nine year old. A surgeon removed part of my son's skull and manipulated his brain. I was numb. I was paralyzed with fear.  Despite that, I think I organized and prepared well.   I think that I had amazing friends and relatives step forward to help us when four days in the hospital turned to five weeks.  No amount of preparation is ever enough for an unexpected five week stay at the hospital with a child that is full of unknowns and crisis 

"My child was in the NICU so I understand what you went through. " Lane was also in the NICU for 29 days (crazy, two of our children were in the hospital for a month). While the fear and anxiety of the two experiences are the same, nothing else is similar.  Newborns don't remember details.  Newborns can't talk about their experience.   They don't beg you to take them home.  Newborns can be left at the hospital overnight, even if it feels like you've left your right arm behind. Most newborns don't scream bloody murder when you take them back to the hospital because they don't remember their experience in its entirety.  My son with autism couldn't be left alone.  We couldn't leave his side.  It takes an enormous toll on a family. 

I know that the majority of people can not relate to our adventures and I am glad. I'm thankful this is not the norm.  I wouldn't wish these fears on anyone.   Please take a moment to think through comments said to a family who deals with chronic medical conditions.  Sometimes a well thought out comment can go a long way in supporting a family who is hanging by a thread daily.  

100 Days

Happy 100 days of school! We made shirts with thumb prints.  They said, " thumbs up! I'm 100 days smarter!"  

They had fun making their shirts.  

Un~relatable

 I'm sure many people dealing with chronic illness or trauma can relate to my unrelatable feeling.  The more I'm around a group of people, the less I feel like I can relate to anyone. I'm positive that it's due to the constant stress of chronic illness in our household. 

Recently I joined a group of friends for a fun adventure.  As they chatted about wristlets, I could not connect.  My world is full of acronyms and enormous Latin based medical terms.  I live in a world complicated by insurance battles, pediatric specialists, and ongoing educational wars.  These are things that the average person doesn't deal with every day, day in and day out. 

I've learned to put on that mask with the fake smile.  My head nods when I answer questions and state that everything is fine.  It's just fine because people don't want to hear about how my sons skull was removed surgically.  Or how I'm paralyzed with fear on a daily basis now that a second son faces the same surgery our first son had this summer.  

People don't want to hear about how I have to figure out how to get the boys into physical therapy and how to prove that therapy is educationally necessary. It would be awkward to remove my feet from the surface so I simply say that we are fine. 

We aren't fine at all.  I have a difficult time relating to a regular world with normal stressors.   I can be surrounded by people or those who are my friends and yet feel all alone. I am drowning in solitude when I keep my feet on the surface. 

I also don't want to bother anyone with our ongoing trauma.  It's difficult to be friends with someone who experiences ongoing trauma.  We are needy.  We can't give back much to other people.  It isn't that we aren't interested, we are tapped out.  We can barely see beyond our day, let alone make a committed plan with a friend.  

There it is - what it's like to be an unrelatable    We are here and we are screaming silently.  Love us.  Relate to us. But instead we will nod and say we are fine because even in our solitude, we want our friends