Wednesday, December 28, 2016

Epilepsy Too?!

A few months ago I was yanked from a deep sleep, early in the morning by my husband's panicked voice calling down to me from the floor above.

'Kristin! Kristin!'

I could tell by the tone that something was very wrong. The tone and the fact that he doesn't tend to wake me up by shouting my name.

I ran upstairs and down the hall to the room our older boys share. The light was on, Adam was up on the top bunk with Damek, and Damek was in the middle of a seizure. I had only seen one other seizure before in my life, but I knew without a doubt that that was what I was seeing.

'Call 911!'

I grabbed Adam's phone and dialed. It rang and rang and rang and no one picked up. I thought I had the wrong number so I looked at the phone. No, right number. I hung up and called again. This time, someone picked up. I calmly explained the situation, while saying good morning to Asher and Caedmon. I felt completely in control.

As I let the firemen, then the policeman, then the paramedics into my home pre-5am, with my pajamas on, my hair unbrushed, my home the obvious residence of young children, it was all totally normal. I was the hostess welcoming our guests.

Damek came out of the seizure and was completely confused with why there were all these strange people in his bedroom looking at him. I held him and chatted with him and our new friends. As they saw that he was pulling out of it and would be fine, they left, first the policeman, then the firemen, and finally the paramedics.

We were left looking at each other. Quite the exciting morning.

Adam packed a bag and headed to the ER at Children's with Damek. I got the other boys ready for the day and got them both to their schools. I waited for word from Adam but it didn't come for a while. I knew it would take a while. There are always a million questions to answer and possible tests run. But I hate being the one sitting at home, waiting.

Finally, Adam called as he was dropping Damek off at school.

'They think it's epilepsy. He has a sleep-deprivation study scheduled in a couple of weeks.'

Bam!

Epilepsy. Epilepsy? Epilepsy?!

Cue the guilt. Cue all the feelings of 'What is wrong with my body? How did I fail my kids? What is wrong with me?!'

I mean, one child with a disability or a difficulty of some kind a mother thinks, 'Maybe I ate something wrong or did/didn't do something'; two kids with disabilities/difficulties a mother thinks, 'What is going on here?'; all three children with disabilities/difficulties a mother thinks, 'My body has completely failed my family! How can this be?!'

I wonder sometimes what it is like to have normally developing children. What is that like? What is it like to just think a cold is a cold and nothing else or the flu is just the flu? What is it like to go to parent-teacher conferences and just have the parent and the teacher? What is it like not to have to visit a child's school multiple times throughout the day to care for your kid? What is it like to not have multiple medications to keep straight? What is it like to watch your children make typical progression on every chart at the doctor's office? What is it like to sit back and just watch your kids grow with little to know input from you?

I really didn't even stress out about the epilepsy, I just thought, 'Well, there's one more thing. Alright, what do we need to do about it?' It just seemed right. 'Yep, that sounds about right.'

The great news is that the doctors are pretty confident that this is a benign epilepsy, meaning Damek should outgrow it by the time he turns 15. And this particular type is one that normally strikes at night, while he is sleeping and typically acts like a tingle on one side of his face. Rarely does it move to other parts of the brain and cause a grand mal seizure, like we saw that early morning.

But I am left with the feeling of failure again. What is going on? With both Caedmon and Asher the genetics counselors reassured us that it was not a genetic issue, just some random, fluke thing. But sometimes, in my weak moments, I think they must be wrong. It must be me. It has to be.

And what good does that thinking do? Absolutely none. So I allow myself my 5 minutes of pity, cry my tears, pray my anguish, stay up way too late writing it all out so I can get it out of my brain. Then I sit up straight, dry the tears, thank the Lord for the good He does every moment, go kiss my boys as they sleep, and allow myself to get the rest I need for a new day tomorrow.

Wednesday, December 14, 2016

Refreshing

Once or twice a year Caedmon has to go in to get a medical device changed out. It has been such a source of anxiety for him that what should typically be a quick, in-office procedure turns into an OR visit involving anesthesia. This time around he was determined to be brave.

'Mom, I won't push the doctor's hands away this time. I promise. I will just lay still.'

The whole trip to the hospital, Caedmon kept repeating that he would be brave, that he would just let the doctor put in the device. The whole long wait in the examining room, he kept a courageous face and cheerfully chatted with the nurse. When the doctor was running late and the nurse let him play on an iPad while he waited he was chipper and chatty. When the doctor finally came in the room and began to explain what would happen and what she was going to do, he smiled. But you could see the tears starting to well up in his eyes and the look of terror behind the smile. When the time came to actually go through the procedure, he turned to Adam and started to cry. Adam asked if Caedmon wanted Adam to hold him and Caedmon agreed. Caedmon screamed and cried throughout the few, eternal moments it took to get the old device out and the new device in but he held as still as he could, much different from previous experiences.

As Caedmon and Adam drove to school after the procedure, Caedmon apologized for not being brave. Adam assured him he was so brave and Adam was so proud of him. Caedmon asked Adam not to tell me anything because he wanted to tell me all about it.

When I showed up at his school a short while later to help him in his daily needs, he told me how scared he had been and how hard he had tried not to put his hands out and push the doctor away. 'It hurt, Mom, a lot! But it was a refreshing pain.'

(Let me just clarify but saying, the procedure actually is not painful, even Caedmon admits this when he has had some time and space to process, it is the anxiety and fear that cause him to imagine this is going to be so painful.)

His words, 'refreshing pain', kept resonating around in my brain throughout the rest of the day. That boy! I thought of how many times I have had to work through some really painful, difficult things, things I have been putting off because I didn't want to have to deal with them, and when the hard work is finally done and the relief at facing it and being on a better path sinks in, I would probably say that the pain was refreshing, it refreshed me and made me better than I was before.

I also thought of how so many parents make it their purpose as a parent to keep their kids from any pain. I never had that option with Caedmon. He was born into pain, so to speak, surgery within the first hours of life. Has that taken away from him, though? Has that hampered his growth, his spirit, his character? I would argue, it has enriched him, and me, and the whole family. Walking through every painful experience has taken away the fear of pain and difficulty. It becomes part of life, as it should be, because it is part of life, for every one of us. Keeping our kids from pain doesn't make them better people, it merely puts off the inevitable and stunts their preparedness for the rest of life. Let your kids feel pain. Let them make mistakes. Let them try and fail. Let them stumble and fall. Then work together to learn something from the experience.

Pain is refreshing.

Thursday, December 8, 2016

Hard And Good Times

I know I've posted before about how difficult IEP meetings can be. The focus on what my child is failing in, short on, missing out on goes against every grain of my being. Tell me what he IS doing, let's celebrate that and leave it there.

Typically IEP meetings are scheduled several weeks and sometimes even months in advance. There's lots of time to prep for it, buy a little chocolate as an incentive to make it through without crying, and talk to mentors and friends about how best to proceed. Considering Asher's Kindergarten year is fast approaching, this is one of the more serious IEP meetings and includes the psychologist who just completed his psychological eval and IQ test. So, lots of preparation would make total sense.

Except I got an email late Sunday night telling me there had been a cancellation for THIS Tuesday and would I like to meet then? I was under the misunderstanding that this would be only a meeting with the psychologist and teacher, only to go over the eval and IQ. Since I had just done that for Caedmon a few months ago, I thought it would be no problem! And then I walked into a room full of therapists and the head teacher and realized, this isn't just a quick update.

No prep time, for brain or heart. Here we go!

I am not going to outline all the bad stuff. We know he has his own developmental curve, his own way of living life and accomplishing what he needs to accomplish. He is his own drum section. And it is working for him.

The first thing every person in the room told me was how much Asher was loved. How he was a kind, thoughtful, caring little gentleman and one of their favorite students. I know they could say that to every single parent that walked in the room, but it felt sincere and heartfelt and came from all of them.

His teacher said, 'Let me tell you a story that describes Asher in my mind.'

She proceeded to tell me of how one day, a number of months ago, the teachers and therapists had an early morning parent/teacher conference. Just before school was to start, the meeting was wrapping up, but it was very heavy in the room, the parent was in tears, and no one was sure just how to close up the meeting. Just at that moment, Asher came sauntering into the room, took in the scene, walked up to the person closest to him, reached out and shook their hand, holding the hand in both of his, looking them in the eye, smiling his irresistible smile, and saying a warm 'hello'. He continued on around the circle table, doing the same for every single person at the meeting. His teacher told me, 'He just instantly lightened the mood of the entire room. Where there were tears, there were now smiles. The mother told me, "That was just what I needed." She left with hope for her own child because of what she saw in Asher.' The mother was a parent of another child with Down syndrome. She had been very upset, wondering what the future would look like for her own kid.

As the teacher finished telling the story, several of the therapists smiled and said, 'Ah, Asher!'

I was in tears, thinking about the hopelessness of that mother, something all parents with kids with special needs feel from time to time, so thankful that my little boy could be a conduit for hope and joy in her heart at such a hard time.

Every person has a purpose in this world, to bring more light into it, more love. Not more money. Not more businesses. To those who doubt the worth of children with special needs, your priorities are obviously mixed up.

Today I was on my third day of a new part time job at a nearby elementary school. As I was dismissing students, a lady came up to me. 'Are you Asher's mom?' she asked out of the blue. I assured her I was. She told me that she worked part time at his school and part time at this school. 'I thought that's who you were,' she said. 'I just want you to know, I love Asher so much! Have a great day!'

Every person has a purpose.

Friday, August 19, 2016

Essential Asher

I have believed for a long time, since Asher was just a wee babe, that he is one of the most emotionally intelligent people I know. From an age when he couldn't really be expected to talk, even were he a typically developing kid, he would seem to sense when someone in the family was feeling upset and try to connect with them in some way: touching, holding hands, putting his face next to the upset person's face. 

Since he has begun to verbally communicate one of his first phrases was, 'You okay?' And it's not just a flippant, one time, perfunctory 'You okay?' when he senses someone is hurt or upset. He says it over and over, with the person's name if he needs to get their attention, until the person gives him a satisfactory answer. If the answer is, 'No', he is immediately there, hugging, consoling, possibly tackling (if it's a brother). If the answer is, 'Yes', he moves on with whatever task he was in the middle of.

This evening was a tough-on-patience kind of time. Every one of my boys, in their own unique way, was losing it, and I, in turn, was losing it. With Asher it came to a head surrounding his pottying or lack thereof. He has recently decided he needs privacy in the bathroom but we can't give it to him completely because he may throw something in the toilet or wander around the room or pee in a corner. So, we play this game of 'Mom/Dad will stand over here, you go potty.' Sometimes it works, sometimes it doesn't. Tonight it didn't. Even after throwing him in the tub and turning on the water, which works about 50% of the time, there was no pee. But he did decide to dribble on the hall carpet, and on his uncovered mattress (waiting to be made after an accident the night before). 

I felt so frustrated! And so defeated!

He smiled up at me and I did not have a ready smile back.

'You okay, Mom?'

'You okay?!'

'No, Asher. I'm not okay. I'm frustrated. Remember, potty is for the toilet.'

'Yeah! . . . You okay?'

This time closing in with a hug, 'You okay, Mama?'

'Asher, potty does not go in the hall or on your bed. It goes in the toilet.'

'Yep!'

Now putting his forehead against mine, 'You okay?'

I didn't have the energy to keep the grumpy face and broke into a big smile.

Big, slobbery kiss on my lips.

'You okay?'

'Yeah, Buddy, I'm okay.'

Huge bear hug. Any leftover tension just drained completely away.

What a gift this boy is.





Wednesday, June 15, 2016

Questions

We were blessed with a gorgeous evening! Asher and I went for a walk down some pathways through our neighborhood. The air was warm and clear and all the humidity of the last few days was blown away with the thunderstorms. There were huge patches of blue sky, covered by an occasional large fluffy cloud. We walked down a path I hadn't been on since fall and was awed at the number of wildflowers nodding at us in the clean evening light. I was contemplating how every single flower is a visible reminder of God's love for us, something I had spoken about at an event just a few weeks ago, and now here was a whole meadow that felt like it had been placed there just for me, just for tonight.

And then they passed.

A mom. Three boys.

Three boys roughly the same age as my three. All riding bikes, the mom bringing up the rear. They seemed so free, so at ease. The mom was completely relaxed. She knew her boys knew what to do and where to go. She had no fear that one of them might careen off in the wrong direction, most likely toward the busy street ahead.

And it hit me hard, as it does occasionally:

What is that like?

What is it like to be just a regular mom?

With regular kids?

With nothing that makes you stand out in a crowd?

What is it like to spontaneously go for a bike ride with all three of your children?

What is it like not to have to plan so much ahead that it never feels like a spontaneous decision?

What is it like not to have to hook up adaptive equipment?

To just let the kids hop on and ride?

What is it like to allow freedom to all of your children without concern for anyone's safety?

What is it like for all of your children to be able to use the restroom with little to no assistance from you?

What is it like not to have to do hand-over-hand cleaning of the bathroom floor for the bazillionth time that day because your child thinks it's fun to spray his pee everywhere? (Of course, she's the mom of boys so she may actually be doing that but not in my dream speculation.)

What is it like not to have your day rigidly scheduled with medical procedures, therapy exercises, and personal care activities?

What's it like not to deal with behaviors? Panic attacks? Spitting? Hitting? Kicking?

What is it like to be 'normal'?

I walked under my own personal storm cloud as I pondered that for most of the way home. Wouldn't it be nice, just once, to have that? But of course, I would still want my kids. I wouldn't want three other kids. I want MY boys, but without the struggles. But would they still be my boys? Would I even recognize them? How can you have the same of something if the things that make that something what it is disappear?

I can't. I can't have my boys, my family, without the things that make my boys what they are. All the difficulty, the trials, the slog are making a beautiful something that wouldn't exist without the tough. I don't even really know completely what that beautiful something is but I see it happening. I see it transforming us into better, more caring, more loving, more giving, more open people.

Thursday, June 9, 2016

Snapping Turtles And Predators

This morning as I went for a run something about the humidity in the air or the water along my route or the way the birds were singing reminded me of childhood times spending summer breaks at my grandparent's house which sat at the end of a canal off the Missouri River. I would spend whole days rowing my grandma's rowboat back and forth, jumping out of the boat when I got too hot, seeing how far down I could swim, never quite touching the bottom. My hair would bleach bright blond and my skin would turn golden brown in the sun. I would come into the house only to eat and then I would be back out again in the water. Whenever my grandpa caught sight of me he would warn me of all the dangers in the water.

'Watch out for snapping turtles! They're so big they can bite your big toe off!'

'Don't get too close to the river! The current will sweep you right out and we'll never see you again!'

'There are some big fish in there. Some of 'em have teeth and they'll think your fingers are worms!'

I would look appropriately serious at his warnings and then go jump back in the water.

One day my mom called me in. She and my grandma were headed to town for some grocery shopping and she wanted me to come with them. I dutifully put on some clothes over my swimsuit and followed them to the car. We collected the things they thought we'd need for a good dinner and, while they waited in the checkout line, I wandered around the front of the store, looking at the gumball machines, coin operated horse ride, bulletin board right next to the large front doors.

All of a sudden I was aware that a man was whispering in my ear. I whipped my head around, eyes huge, body tense. I knew I was in danger. It took a minute for my brain to realize what was happening. The man was dirty, greasy, disheveled. He reminded me of the homeless men our church would sometimes serve in downtown Denver. He was gone before it registered what he had said to me and what had happened.

'If you ever need a friend, call me,' the man said. I looked in my hand where a tiny scrap of paper sat with something scrawled on it. He had shoved it in my hand before he took off.

I was terrified. I made a bee-line to my mom. I let the paper fall to the floor as I ran. I spent the drive back to the house lying on the backseat, fearful that the man was following us and would find out where I was. I stayed awake late into the night, hearing every sound, positive that it was the man coming in through one of the open windows. But, and this is the saddest thing to me now as a mom myself, it never once crossed my mind that I should tell my mom what just happened. I don't even know why. Why wouldn't I have let her know? Why wouldn't I have asked to call the police? Why wouldn't I have shown someone that piece of paper?!

Because I was a little girl who had never had any conversations about what to do in that situation. My parents, my grandparents weren't bad. They just hoped that we lived in a world where I would need to know about snapping turtles but not about predators. They wanted to believe that their children and grandchildren would not be the ones targeted, would not cross paths with dangerous people who wanted to harm them.

There is something innate in children that causes them to clamp up when they should talk and the key to unlock that is adults who communicate in a way that doesn't cause more anxiety but informs. But we have to believe that our children will most likely meet people who are out to cause them harm, people they know, people they don't know. My story happened 30 years ago. I need to see that the world is not a safer place than it was then. It is horrible that these conversations are needed but they are.

I thought of the video of the mom in Florida whose daughter was grabbed and dragged toward the door by a would-be abductor. Thank God that woman was aware enough to jump into the fray immediately and save her daughter! If the man in my story had decided to be so bold, I would have been long gone before anyone realized what had happened. I was right next to the door. My mom was far away.

Give your children love today. And talk to them. Talk to them about what to do when they feel afraid. And be a safe place for them to run to when they are afraid. Teach them that when they feel nervous or scared of an adult it is okay and to respect those feelings. Most of all, don't be afraid to talk about every little thing they want to talk about.

We're going to get through this parenting thing and our kids are going to grow up to be amazing adults.

Wednesday, June 1, 2016

The Right Motivation

Asher is capable of doing a lot of things . . . if he feels like it. He loves to show his new skills as he develops, he feel so proud of himself. The smile is priceless.

The adventure begins after he has shown himself to be proficient at something and decides he's bored with it and doesn't want to do it anymore.

It happened with eating with utensils. 'Yeah, I know this Mom. I'm not interested anymore. You do it for me.'

It happened with picking up . . . anything. 'Yeah, your songs aren't doing it for me anymore. I'll sit over here and read a book while you pick up the gazillion cars I just dumped out everywhere.'

And now, it's happening with toilet training.

Two months, TWO, he had been completely dry. Night and day. He would go nearly every time we sat him on the toilet. It had been amazing and beautiful and so cost effective. Then, all of a sudden, we would set him on the potty and he would sign 'all done' about 2.9 seconds later. We would sit and we would wait. We would sing the potty song, we would cheer for the pee pee to come out, all things that used to work to get him to actually do the business we are there for. But, nothing.

We needed new motivation.

So, we started standing up to go, something new! That worked for about two weeks.

We started getting him excited about what he would do after he went to the bathroom, 'Do you want to watch a video?', 'Would you like a cookie?', 'How about going to the park?', 'Do you want to swing?' . . . 'Let's go potty first and then we will!' That worked for about three weeks.

There are days where we have to make-do with the bath treatment. It's impossible to continue holding it in when you are sitting in warm water, right? Yet, somehow he still does!

What is truly impressive is his determination and strength of will!

Does it frustrate me sometimes, that he is so set to do what he wants to do?

Oh yes!

But it is also a lesson to me. Kids' opinions in general often get overlooked. But I have noticed that children with mental disabilities are stereotyped into a category of 'easy' meaning they just go along with what you want them to do and don't express their own wishes. They are happy to do what others tell them to. They don't have the mental capacity to have thoughts of their own.

This is such a simplistic view! I am happy to say it is false. And I am happy to recognize the individuality of my own son. He is not a robot or a drone, he is himself. He has thoughts, opinions and preferences. He is a beautifully made human with all the uniqueness that comes with that territory. Please remember that the next time you see someone you think is just being difficult. Perhaps they are communicating and learning to control their own little corner of the world in the best way they know how.