When in doubt, blame Autism

I have tried to step away from the news today. Reading about the senseless death of children once is more than enough. I didn't need to read over and over about how 20 children would not be coming home from school. I didn't need to see the pictures of terrified children holding hands as they vacated the school. Instead, I was going to spend the night curled up on the couch with my kids and giving them every ounce of love I could.

That will come, but first I must get the anger out of me. This anger is not towards the gunman (I will not use his name, he doesn't deserve to be recognized). I got that anger out while my children were at school. This is a new anger, an anger directed at the media. News reports are now saying the shooter  had "Autism symptoms" as if that was a contributing factor.

This is not the first time an Autism Spectrum Disorder has been the focus after a mass shooting. After the Aurora cinema shooting, Joe Scarborough alleged that the shooter had Asperger's. I was unable to find anything to substantiate that claim. It may be out there, I am a horrific Googler and I may have missed a million articles on the subject. But in the articles that I did see, it was all one man's beliefs about another man he had never met before.

I do not know anything about either shooters, aside from the fact that they hurt an unimaginable number of people with their actions. What I do know is that people coming out and placing the blame on Autism/Asperger's/PDD-NOS is not the way to go. We cannot lump the actions of a few men and use that to define a group.

I am fortunate to be a parent to a child with Autism. He has a hard time expressing his feelings and is often in his own world, but then there are moments, moments like the video below, where you can see the person deep down inside. You can see the caring and gentle person inside.

I ask that you remember that people are more than just a diagnosis. My son is more than just his Autism and his actions are not solely because of his diagnosis. Just as the actions of the gunmen in Aurora and in Newton are not defined by "Autism characteristics."

Well shit!

I am super awesome at three things. I can make awesome mashed potatoes. My Grandpa Pat taught me the secret and no, I won't share it. I have mad crafting skills and can do MacGyver type crafting. Give me some hot glue, 3 inches of felt and a Bedazzler and I can make a functioning boat. No lie. Lastly, I have mastered denial and have made it into an art form.

I did just a bit of research on Chiari Malformation over the last week. I try not to Google things when it comes to my kids. Mostly because I am horrible at internet searches and would come across a website stating all their symptoms point to Antarctic Swine Polio. In the limited Googling I did do, these are the Chiari symptoms I came across:

1. Headache
2. Progressive scoliosis
3. Cerebellar dysfunction (difficulty with balance, low muscle tone)
4. Alteration of voice
5. Frequent respiratory tract infections.
6. Suspended alteration of sensation (arms are affected, but not legs)
7. Spasticity

Red Flag symptoms:
1. Severe swallowing problems
2. Tachyarrythmias
3. Severe nausea
4. Central Sleep apnea

All of the bolded symptoms are ones Josie has. Even with that, I was still able to deny that this was her issue. If this was her issue, she would need major surgery. On her head. No, in her head. So even though they found a Chiari Malformation, in no way was it severe enough to cause her symptoms, there must be something much less scary to blame.

I was able to tell myself that until today when the MRI results came in the mail. I searched the page hoping to find the words "Sorry, we made a mistake. Not only does everything look awesome, but she also has a tiny unicorn living in her skull." Unfortunately those words weren't on the page. Instead words like "below the level of the foramen magnum of approximately 12mm" and "small CSF flow" were in their place.

Even I can't deny that. Shit.

One a high note, only thing I am great at (great, not awesome) is finding a silver lining. The silver lining to this is patients with a 12mm Cerebellar Tonsil always have symptoms. So there is a high chance this will explain everything.  Now I just need to find a magical fairy that can wave her wand and put Josie's brain where it should be. Maybe she can even put that tiny unicorn in there too.

So close I can almost taste it!

I never thought we would hear the words "that may explain Josephine’s symptoms." After years of false hope, I had basically resigned myself to the fact that we may never our explanation. Today was really no different. I went into Josie's MRI thinking "this will be another test that leaves us with more questions than answers" and wondering why I was putting either of us through it.

Because Josie had to fast before the blood work, we left early for the procedure so she didn't have to watch as the other two kids ate. We went to an indoor play area and spent a few hours laughing and playing. There is something about a water pump and pretty rocks that takes her mind off being hungry.

The MRI went very smoothly. I went with as she went under anesthesia. In the past, she has gone under swinging, today it was peaceful. That peace carried through the long wait for her to be done and into her waking up. Everything when smoothy until Josie started yelling at her nurse for shooting her while she slept. I kept trying to tell her that giving her an IV is not the same as shooting her, but there was no changing Josie's mind. She continued to complain about being shot even as we were leaving the hospital.

I was prepared to have to wait over the weekend for the results, but as we were pulling in to get our customary donut I got an email from Dr. Randy. The MRI showed a Chiari Malformation. Basically, the the area where Josie's skull meets her spine isn't wide enough and puts pressure in places where there shouldn't be pressure. A Chiari Malformation would explain all the symptoms, BUT because of how common it is, it may just be that she has this plus something else. If that is the case, you will be able to find me completely drunk in my back yard.

The next week weeks will be crazy. Dr. Randy wants Josie to meet with a neurosurgeon and wants Teague and Hailey to get in for an MRI. The one good thing is that Hailey and Teague get to bypass all the other tests and go straight to the MRI.

Hailey's garden update

Each evening, Hailey goes out to water and weed her little plot of vegetables, careful not to harm any of the plants and reports back just how much they have grown since the day before. I was a bit worried that the novelty of a garden would wear off, but she is grows more proud of it with each day.

The sixth delivery of vegetables was made today. So far Hailey has helped a disabled Vet, a young couple and a woman who is obviously struggling. In true Hailey fashion, she is able to find the beauty in each person she helps. Today was no different. We met a woman outside the super market that had the look of someone that had been using meth for some time. She was missing her teeth and scratched violently at her arms as she rocked on a bench, but as we walked away Hailey said "did you see how her eyes sparkled when she smiled?" 

When this little journey started, I figured it would be a good lesson to Hailey about how plants grow and maybe a bit about helping others.  We would spend hours discussing the different plants, giggle about how much dirt we had under our nails, and maybe make a delivery or two of veggies. While we did talk about the plants and giggle about dirt under our nails, I never imagined how much time we would spend talking with the people we brought the food to. I think this is what has made Hailey so determined to make her garden successful. She is no longer growing the food for a stranger, she is growing them for her new friends.

So far Hailey has been able to pick peas, beans, carrots (side note: carrots don't like to be transplanted), spinach and a handful of cherry tomatoes. The peas yielded more than I thought they would. The six plants were able to fill eight sandwich bags. I am not sure if that is a lot for a pea plant. I was not blessed with a green thumb so I just assumed they would die after giving us a pea or two.

Since summer finally started to grace Washington, Hailey's tomatoes, peppers and cucumbers may have a chance to grow. Let me rephrase, maybe the fruit will grow on the tomato plants. The tomato plants are ridiculously tall.

I will need to stand on the fence to get the tomatoes from the top

Hailey and I have already started talking about which veggies we will plant in the fall. I think we will try carrots again but this time I won't touch them. 

Religion, homosexuality and a very curious six year old

I am very blessed to have people in my life that are different races, religions and economic statuses. I am even more blessed to have these people in my children's lives. Because of the different perspectives, it has opened up the door to some wonderful conversations with the kids.

Anyone that knows me knows that I am not a religious person so when the topic of religion was brought up I struggled to come up with a way to explain it without letting my feelings get in the way. In the end, the kids were told that religion is like having a favorite color. You love that color and feel with every fiber of your being that it is the best color. My children have come to learn that their "color" may not be the same as their friend's "color" and that is ok. It is ok to have a different "color" and be proud of that "color," but you should never force your "color" on someone or put down someone or their "color." The girls understand that it is all these different colors and all the different beliefs that make the world such an amazing place and it would be a dull world if everyone had the same favorite "color."

Hailey is one of those children that asks questions from the minute she wakes up until well after she should be in bed. It is one of my favorite qualities in her, but it often leads to topics being brought up that I wouldn't expect to talk about with a six year old. Naturally one day she asked why we don't like the other "colors" and this led to the topic of heaven, hell and homosexuality. I am often amazed at the things that come out of Hailey's mouth as she is wise beyond her years. When I explained that many people disagree with two men or two women getting married her response was "if they don't agree with it, then they shouldn't do it. But really, how does it affect them?" I wish I had an answer to that question. She asked me it days ago (and a few times since) and I honestly do not know how it affects others.

Over the last few days I have read hurtful messages in response to Gay marriage from both sides. I do not understand how as adults this is considered ok. Religion is such a personal experience and should be about a relationship between you and your God, not about degrading other human beings. Like I said, I am not a religious person, but everything I have read about God and what I have heard from friends is that God is about loving your fellow man regardless of their sins. I say be proud of your "color" but realize that not everyone feels the same and that is ok.

Tinker

Tuesdays are my favorite day of the week during the summer. We don't have any therapies or dance classes and it is Farmer's Market day. I am not like most people. I don't go to the Farmer's Market for the produce or handmade scarves, I go for cupcakes. In my mind, cupcakes are more healthy at the market because they are always next to a produce stand. Don't ask me why that helps, but it does.

Usually the kids and I spend about 10 minutes walking around and looking at things, grab our cupcakes, play at the park for a bit and then head back to see the rest of the market. Teague is generally not a fan of the crowds, so we keep it short and sweet. The second trip through is when I buy some veggies, but that is only because I feel guilty about eating a cupcake before 10am. I know I said they are healthier at the market due to their proximity to produce, but I never said healthy, hence the guilt.

Today the kids and I did our usual routine. We smelled the flowers, shot the shit with the man selling plants and then made our way to the cupcakes. They never ask what flavor any of the cupcakes are, they pick based on what is on top or what color it is. There are usually a dozen or so flavors to pick from, but the girls always discuss which one looks best and they both pick that one.

After getting our cupcakes, we made our way to the park. We were almost there when Josie fell and dropped her cupcake. Of course it landed frosting down on the sidewalk. Josie was more than a little upset and before I had a chance to say a word, Hailey piped in and said "Here Josie, why don't we trade. I don't really want frosting on mine." The girls swapped cupcakes and we made it to the park without any more tears.When we got home Hailey told me that she really did want the frosting, but wanted a happy sister more.

The other day I was talking with someone about the kids. I told her that Hailey had this incredible ability to sense what others need without being told and help them. She can calm down Teague faster than I can when he gets upset by picking up on little clues that I often over look. The woman is very Irish and was telling me that the Irish have a word for people like that. They call them a Tinker. Often it refers to people who fix objects, but it can also be used to describe people who fix problems. I don't think I could ever sum up Hailey in one word, but if I needed to, I think "tinker" is perfect.

The jingle of doom

I know the exact time the ice cream man makes his loop around our cul-da-sac. Just after 2:00 every Wednesday, Saturday and Sunday the jingle from the truck fills our home, so does the sound of Josie crying and Hailey getting angry. For the last three years, that jingle has been a reminder that the kids are different. It not only reminds me, it reminds them as well. Having Dysphagia means they can't run out to the ice cream truck on a hot day like all the other kids. That is, until this year.

A few weeks ago we heard the ice cream truck coming down the street and both Josie and Hailey reacted as they usually do. Hailey said "It isn't fair. Why can't they carry ice cream that we can eat?" That sparked something in me. She was right, why couldn't they carry ice cream for my kids?

After a few phone calls, I was able to get a hold of the man that owns the ice cream truck on base. We talked for some time and he finally agreed to keep ice cream for the kids as long as I provided it. No biggie. I did say that we would basically pay him rent in his freezer. I want the kids to have a normal experience with buying ice cream, which includes giving the man money.

I spent hours and hours searching for the perfect recipe. I didn't want it to be too boring for the girls, or too different tasting for Teague and they all had to be the same. I went with a caramel frozen custard. I did add some xanthan gum to make sure that when it thaws it is still thick enough.

Today, at 2:07, after 3 years of tears every time the truck drove by, my kids got to buy ice cream from the ice cream man.

 It was rainy and cold, but it was still the perfect day for ice cream.