God is at Cracker Barrel

Many times I will head down to this awesome coffee shop down the road to work on my blog. Today was no different and I was horrified to discover an accordion player noodling away not as just a starving musician on the sidewalk, but as hired ENTERTAINMENT! 

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. 

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! 

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. 

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.

Homework Helper

I thought this day was going to be such a good day! So far, all had gone the way I wanted it to- laundry was up to date, my paper for school was moving along nicely, and I even got to share a cup of coffee with my bestie at her house this particular afternoon.

All illusions of perfection were dashed when I saw the babysitter calling...

Uh-oh. 

There are two phone numbers I do not like to see come up on caller id- babysitters and the school. Nine times out of ten, these calls are not going to be good. 

I love all of my sitters! I have been blessed to have great girls that love Liam and are super understanding of his diagnosis- even when he is less than stellar or moody blues! This particular sitter has been a Godsend. She is one of those that just picks up on things that need to be done around the house. She doesn't use the down time as a time to get caught up on Facebook (because that's what I totally would've done if I was a babysitter nowadays). She texts me to ask me if I want my whites washed or if she can get dinner started. Brings a tear to the ole eye!! 

But, this was not a good call. As soon as I picked up the phone, I could hear her trying to hold back tears. (not a good sign)

"Are you coming home soon?"

"Yes, but I'm still another 20 minutes away! What happened? What did he do?" 

It turns out Liam got violent this day, something that he hadn't done in a while. 

Having a tutor helps me.

My sitter comes a few times per week to do homework with Liam. If she did not do this, someone would be hurt in my house- me or my children. Not sure which. Homework is NOT my strong suit. Which is why the Bota Box wine is nicknamed the "Homework Helper". Sadly, I have to get my high school freshman to work out math problems with my 5th grader because...well, the problems are too hard for me. Needless to say, my sitter is an integral part of my week. WE ALL NOTICE WHEN SHE IS NOT AROUND!

It seems my sitter asked Liam to recite his vocabulary words one too many times and he decided he needed to give her a swift kick to prove his point. I do not make light of this because I have been on the receiving end of this kick and it is painful. And, even more than pain, it is traumatic. 

The trauma of having a child tantrum and assault you is tough. You cannot know this until it happens to you. And, when it does, it catches you off guard, and you feel exposed and vulnerable. 

I have had to restrain him before because he was violently throwing things and was going to hurt himself and/or others. It has gotten so much better over the past few years. If it had not, I don't think I would have the emotional energy to even write this blog. 

Thankfully, my sitter handled it the best way she knew how. I told her to go ahead and leave my 14 year old in charge until I could get there in a few minutes. 

So, what do YOU do in times like these? 

I choose to turn the tv on and check out.... 

***sigh***

No, that's what I wish I could do in these moments. 

These are tough times. You are mortified as a parent that your child is capable of hurting another human being. You are stressed for the sitter and wondering if they know what to do. You are sad because you thought you had dealt with this before- you thought this part was over. Or, at least, that's what you wanted.

Thankfully, I have an older child that can take over, if need be. In this instance, it was best that my sitter get out of the line of fire, assess for safety issues, and get out of dodge! 

But, not every one has an older child capable of stepping in. And, not all autistic families have good help available to them. 

In the past, I have placed ads on the online bulletin boards of colleges to get help for Liam. I am a single parent, so having reliable, competent help is paramount in my life. But, looking for someone who has had experience with autism is really helpful- especially if that person will be a significant part in your child's week. 

There is nothing more traumatic than an autistic outburst!

Having a behavior therapist on call is also helpful. My girl, Hunter, has been my go-to person when I have had to go out of town for any amount of time. I have her phone number plastered on the fridge in case the family member or sitter that is keeping Liam has any issues. Hunter is kind enough to do that. Not everyone would be so generous with their cell phone. But, she is committed to seeing her families through some of the most difficult times in their lives. 

Also, having a 'safety' plan in place is key for those times when things are not going so swift. 

Admittedly, I am not the best at warning my sitters of worst-case scenario. Who wants to tell their fresh-faced college student that they should wear a helmet in case a blunt object could potentially come flying in their face?? I like to do the slow fade approach. Win them over with Liam's precious smile and antics, and then cross my fingers nothing bad happens or sets him off. **sheepishly** "tee hee!"

And, honestly, his behavior has gotten increasingly better with age and maturity. So, many times, I simply forget.

 [But, one could ask themselves if it is my unconscious (Freudian) "forgetting", and really I am just hoping someone stays on to help me with my kid. Not sure. I'll tackle that in my next therapy session.]

Safety plans really could be as simple as locking the child in a room that is child-proof, calling for help, and sitting outside of that room until help arrives. Another idea is putting the rest of the family in the car and locking it while the parent or person in charge goes to deal with the child. 

Getting the child to a safe place and calmed down is really the first order of business. We have worked so tirelessly on getting Liam to self soothe that the strategies are finally paying off. In this instance this week, he put himself in his room (albeit while slamming the door) and got himself out of the hostility. It takes training and a lot of patience and consistency to get these kids there, but it can be done. DON'T GIVE UP!

When I finally got home, I was calm and collected (after turning on rock music extremely loud and banging the drums on my steering wheel for the remaining 15 minute drive) because the last thing you want to do is seem flustered with your child. They smell weakness and they have 'won' when you show signs of being upset. (This is very hard to do- I have TMJ problems from clenching my jaws.) I gave him his sentence- he was going straight to bed (at 6:45pm) and no technology for the next two days. 

I did not get the empathetic apology I was hoping for. It was forced and he was still trying to justify his actions with, "well, she was making me do homework too long." I still made him write the apology note. As an older friend said to me one time, "You teach your kids to say please, thank you, and I am sorry. Eventually, it will catch up with their hearts."

Yesterday, he got off the bus as usual.

"Liam, I made you your favorite snack."

"Thank you, mom!!!"

This thank you came out on his own. I didn't even have to ask for it.

Baby steps.