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| Just say NO! |
Ugh. I will push through as I cannot go home during homework hour. I must stay here and endure the bad notes. Because if I go home while Liam's tutor is working with him, there are too many cooks in the kitchen. I will try to give him directions at the same time as the tutor and that just doesn't work so well. He is confused as to who he will talk back too!
Speaking of talking back, has your child ever had a seizure? (I couldn't think of a segue)
Well, mine has. And, it was incredibly scary.
I was not there, mind you. It happened at school one day. And, I got that call, that scary, scary call.
The nurse had called to say that he was acting really strange and placed his head in his aid's lap. He began slurring his words and seemed confused. The nurse looked him over and immediately called me. She also mentioned that his balance was off when he was trying to walk down the hall.
I began to cry. I didn't know what was happening to my precious little boy. He was in first grade. We had been through so much- now this??
We all decided it would be best to take him home for the rest of the day and let him lay low. I called Liam's neurologist and we scheduled an appointment the following week for an EEG.
The nurse called me the day before the appointment to give me the guidelines for the EEG. One little tidbit would be for him to stay up most of the night before his brain scan. She just "threw in" that he could only get about 3-4 hours of sleep.
Cool! I couldn't wait to attempt to keep an autistic 7 year old up basically all night.
I was also so nervous about how he would handle the actual procedure. How would he do with nodes all over his head? How would he act on no sleep?
God will provide in mysterious ways, I have found. I run around with a creative, musician crowd that loves to stay up all night. I had a group of guy friends that would take this challenge on with absolute enthusiasm. We decided we would take Liam and his brother bowling at the midnight bowling center.
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| Midnight bowling is the BEST for keeping little boys busy! |
Liam thought this was the greatest moment ever! These three guys met us at the bowling alley at 10:30 at night. We grabbed a bucket of beers, a few hot dogs, and made sure Liam and Walker were the stars of the show!
We left the bowling alley about 12:45am, and my goal was to keep Liam up until about 1am. This was no easy task. We decided to stay at a friend's house that was closer to the hospital in case Liam tried to fall asleep on the way in. (Did I mention this was not allowed?!)
We settled in until about 1:15am and crashed. I set my alarm for 5am, but our appointment was not until 8:30am. This was going to be the longest 3 1/2 hours of my life. I was alone with two boys- one of whom got to sleep in and one who was so confused and angry as to why I was getting him up at this ungodly hour. (I still think this when the bus for my high schooler comes at 6:50am. WHY, DEAR GOD, WHY??)
I pushed him into the shower with him crying, saying he didn't want to be here, I hate you mother, why are you my mother, etc, etc. So, I told him I would take him to get the BEST breakfast EVER! Still not winning points with him. He was groggy and tired, and so was I.
So, we went to the place where everyone comes alive and dreams really do come true- Cracker Barrel.
We all know that this is really just a glorified truck stop.
But, something about that familiar smell of grease and pancakes, a hot fire in the middle of June, and "Country with a 'K'" homestyle goodness that makes me feel right at home. I am from 'Bama, after all!
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| Kountry Goodness |
The drive to Cracker Barrel was a comedy show in itself as I was trying to maniacally keep Liam awake- listening to loud music, singing at the top of my lungs. He just stared at me with utter contempt. Normally, this would have been an all out fist fight with me on the receiving end, but the fight had left this little one's body about three hours before, so I had that at my advantage.
We sat down to eat when he began to freak out in his chair. I tried to explain to him what was going to happen, the schedule, all of my usual tactics, but he was pissed. He was angry that I had dragged him from his comfy sleep to a room full of lights and country music. I began to cry as well. I felt alone and heartbroken as I did not know how to make him understand how necessary it was to keep him awake. I didn't even really know how to explain it to myself since I'm not a neurologist. (could've fooled you, huh?)
After a stack of pancakes, bacon and eggs, an IV of coffee, and our hands on every piece of knick knack that Cracker Barrel had to offer, we left CB with still an hour and a half before our appointment. We went back to my friend's house and woke up Walker. He was not about to sleep through any more of our nightmare-he would be made to join in the fun!
So, we packed our bags and headed for the hospital. It's always interesting looking around at all the sick people in the waiting area. You're thinking, "What are these people in here for?" Some are more obvious if there's a disgusting hacking cough or tubes coming out everywhere, but then some are not. I was hoping that we were blending in, but Liam was insistent upon "stimming" on the wheels of the wheelchairs going by. He would look intently at them, like his life depended on it. I really didn't care at that point.
Our name was finally called after what seemed an eternity. Liam was thrilled to learn that this jaunt earned him a ride in the wheelchair up to the 5th floor. He could not contain himself!
We were greeted by the neurology department who gave us the run-down of the morning. Liam was placed in a bed and he sat patiently while the nurse placed nodes all over his head. I teared up looking at him. To see your son lying vulnerably with tubes connected all over him is not easy. But, he had the attitude of a champ!
He had to simulate hyperventilating by blowing on a pinwheel several times, then he had to watch a strobe light, and then...they asked us to fall asleep. The most glorious part! And, he went straight to sleep without any hesitation. And, don't you know we all did!!
When we woke up, we were told we could leave, but would have to visit his neurologist before to get her diagnosis of the problem. She did not see anything terribly unusual in his brain patterns. There was, however, something that 'blipped' while he was sleeping that was congruent with his diagnosis of autism, and was not uncommon, she said, to see in someone like him. She said it was more likely that he needed to stay on the seizure medicine for the rest of his life.
I wasn't sure how to take this. She was confident that the medicine would help him regulate and keep from having seizures, but she could not be totally sure. Part of me was devastated that I was staring down the barrel of a life with medications and possible seizure activity. And, part of me was relieved to know there was help.
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| See? It's not so scary! |
As with any part of autism, there is such a range of emotions. Sometimes you compare your lot with others and think, "well, it could be worse." And, then other times you just long for normal. You just want to have the 'normal' problems of having broken arms from tree climbing or stitches from falling down. No, with autism, you have all of that and much more to deal with. And, many times, the future is so hazy that you do not know at all what to expect.
But, what you can know is that, if you are aware enough, you will see the ways that God does provide in the moment. He provided my friends who were stoked to go bowling at midnight. He provided a breakfast place that was open early to house us and our need to waste a lot of time. He provided doctors and technology to help us get to the bottom of Liam's issues, and medicine to stop the seizures from happening. I forgot to say that while I was sitting in Cracker Barrel, I remember distinctly receiving several texts from friends as they were getting up saying that they were thinking and praying. That was God. He knew what I needed right then and there.
I am happy to report that Liam has (knock on wood) NOT had a seizure since that day. And, he is able to tolerate the generic brand of medicine so his meds are only about $6 per month as opposed to the almost $175 that the name brand was.
And, this experience was one of those that I can look back and see God's presence. He is not in the past and in the future. He is in the right now. And, when I am able to BE here- there is less fear and more trust. In these rare moments, I am able to accept and receive the grace of knowing that all is okay. That I will make it some way, some how. Even in the sadness, because nothing lasts forever.
There will be joy.
Even if it's in a pancake or a wheelchair ride. God is near nonetheless.
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