A mother's desire to complete the Aspergers puzzle and connect with her beautiful son
Monday, February 25, 2013
Searching for Answers...and Finding Confidence
It happened yesterday.
It's been a while since it's happened. In fact, I'm not even sure I can tell you the last time. Which is great, considering it used to happen frequently and with much more fanfare.
Yes, my husband had to physically restrain Jacob while we were out and safely get him to the car.
Which means people were staring. I don't blame them. I'm sure they were curious as to why this child who appeared old enough to know better, was yelling in the store. I'm sure they were right there ready to intervene if needed, as he screamed, "No Daddy!" wondering if indeed Daddy was acting appropriately. I get it. But that doesn't mean I like it.
It used to be a nasty scene, of Jacob hitting, yelling, and just throwing an all out fit. When he was younger, we could simply scoop him up and carry him out of the store kicking and screaming, swiftly putting an end to the moment. We still got stares. Sometimes they were stares of disgust, an all-knowing look of "your kid is a brat". Other times it was a look of sympathy saying "I've been there". But as Jacob gets older the looks have changed, becoming less accepting, and getting him out of the situation is no where near as quick and easy.
I had a feeling yesterday as we pulled into the packed parking lot that it was not going to be a fun trip to the store. Our area had just been hit with a bad snowstorm, and another was looming, so the store was packed. So packed we had to park at the very end of the parking lot.
As always when something is out of the ordinary, I prepped Jacob for what to expect and what was expected of him. We went over how the store was very busy, how we were in a somewhat hurry as we were heading to church after running our errands, and how it was expected of him to stay by us and use walking feet in the store.
I always say that, but rarely does it happen.
We stepped into the store, a big box retailer, and Jacob was thrilled to spy a sample station up ahead. "Samples!" he yelled and took off in search of something yummy despite the fact that we had just finished lunch not ten minutes prior, and forgetting my request of "walking feet".
While I weaved through the mass of people making my way to the pharmacy, Jacob began to fill his tummy and strike up a conversation with the sample lady, an older woman who seemed pleased that this young boy was so interested in her product.
Sure enough after filling my prescription, I found Jacob standing in a packed aisle with the sample lady scouring the shelves for the last box of coconut chocolate energy bars at $5 a box. They found one, and Jacob began filling our cart with boxes of various flavors while the sample lady scurried around through the mess of people in search of coupons for me.
"We are not getting him energy bars!" my husband announced. "The last thing he needs is more energy, and they are $5 a box!"
I knew we weren't getting them. I had no intention of getting them for Jacob. But I also didn't want a meltdown right here in the middle of a packed aisle and with the sample lady there to witness it all. Instead we guided Jacob to the cereal bar aisle, and let him choose whatever he wanted. The aisle was still packed with people and Jacob was adding to the congestion as he went back and forth on what to choose. But in the end, he was happy, I was happy (at $1.50 a box who wouldn't be happy) and the energy bars were put aside.
We passed the sample lady and proceeded to the check out, meltdown squashed before it even started.
Ahh....but I shouldn't have been celebrating a victory so soon. As we stood in line waiting, Jacob noticed the CDs lining the endcap. "Mom, look. They have the NOW 45 CD," he told me. "I wonder if they have the NOW 43 CD here?" Jacob asked.
As I unloaded my items onto the conveyor belt, I notice that Jacob has politely pushed his way to the front of the line. The woman standing there graciously stepped aside as Jacob cuts in line, interrupting the conversation the cashier is having with the woman.
"Excuse me," Jacob says, "Do you have the NOW 43 CD?" he asks the cashier.
"Jacob, get back over here," I say and thankfully he obliges. The cashier clueless as to what my son had asked, continues on and the woman pays for her items.
"But mom! I just want to know if they have it!"
As the cashier begins our transaction, I explain to Jacob that the cashier couldn't possibly know if they have a certain CD in the store. And then opening my big mouth, I tell him that only the people working in electronics would know the answer.
Jacob was off.
He was heading for the electronics department, determined to get his answer to if they did in fact sell that CD. He had no money of his own, and he knew we don't just purchase items for him for no particular reason. But he had to know the answer, and he was off to find it.
My husband took off after him as I continued checking out. It wasn't long before they returned, my husband gently guiding Jacob toward the exit. As we moved as a family together, me pushing the cart with the baby sister in it, and my husband physically holding Jacob by the shoulders helping him walk, Jacob began to yell, "No Daddy! No!"
Of course people looked. Out of curiosity. Out of concern for this child. Out of judgment. They looked and stared, and my non-reactive husband did what he needed to do. He kept hold on my son for his own safety and walked him toward the door.
The stares don't bother me like they used to. For the most part I don't even notice anymore. When Jacob is having a moment my focus is on him and his safety. But for one moment as we passed the Starbucks located by the exit, I happened to look up, and I saw the sea of faces looking our way.
"Just get to the car," I kept thinking to myself. But we had an entire parking lot to walk, a parking lot full of impatient drivers trying to stock up for a snowstorm. None of those drivers were concerned about my son's safety. Their minds were filled with finding a parking spot, or their list of items needed if they happened to get snowed in for days. A child darting out of nowhere was not on their radar. But that was all that was on my mind.
In situations like this my husband and I both know how Jacob will react. He's a runner. And he wanted nothing more than to run back into the store to find his answer. And boy was he trying to get away from my husband.
"Daddy, let go!"
"No, Jacob, there are too many cars and I want you to be safe," my husband replied again not reacting.
"I promise I won't run, Daddy!" Jacob replied.
My husband wanting to trust our son loosened his grip slightly, just enough for Jacob to wiggle loose, and sure enough he darted out into traffic.
I screamed at my husband to grab Jacob. Thankfully he was fast enough and got hold of him again just as a car came barreling down the aisle.
I didn't care what people thought of us at that point. I didn't even know if anyone was looking at us. All I wanted was my son safely in the car so he couldn't bolt at a moments notice. I wanted him safe.
"Just get to the car, just get to the car..." I repeated in my mind.
We got there, finally, after more attempts at running, more yelling, and more chaos.
As my husband and I reflected on it later, we realized we handled it poorly. Sure we didn't react, not like we would have years ago pre-diagnosis when we were frustrated and unsure what was going on with our son. We've learned to keep our emotions in check when Jacob is upset. When we escalate, it only escalates the situation more. So we did a great job remaining calm despite how upset our son was about not finding the answer to his question.
In that regard we have come a long way. We've learned a lot on how to handle difficult moments with Jacob. With each meltdown, tantrum, or fit, as we dissect it after the fact, we realize what WE did wrong, and how to be better for next time.
What if we had simply let Jacob ask? What if we had waited those few extra minutes as he politely asked the electronics employee if they had the CD giving him his answer? Sure we may have been a few minutes late for our meeting at church, but Jacob would have been satisfied, and he would have walked out of the store on his own.
It wasn't Jacob's fault. He couldn't stop. He HAD to know the answer right at that moment. There was no reasoning, he was on a mission, and he needed to complete it. And we foiled his plan.
The silver lining in all this is, here is this sweet, polite boy who has enough confidence to ask the sample lady where her product is located. Confident enough to kindly ask the cashier for assistance. Confident enough to march over to the electronics department alone to find his answers. It doesn't matter where we are, the library, the store, a neighbor who happens to be outside, Jacob will not hesitate to strike up a conversation. It's times like this I am so proud of him. A boy who at seven struggles buttoning his pants, or opening a straw, yet believes in himself enough to seek out answers on his own.
So today I am joyful for my son's confidence. I am thankful for the great partner I have in parenting our son. And I am humbled in knowing that we will never have all the answers to parenting our son. And that is ok, as we continue to learn something new from Jacob every day in this journey as he searches for his own answers.
Saturday, February 16, 2013
Valentines Smalentines!
I dislike school parties.
The funny thing is, before my kids were in the school system, I had visions of me being the perfect room mom. It was totally my thing. I love to bake, crafts, games, all of it. As a kid, I had loved school parties filled with cupcakes with too much frosting and games of "Heads Up 7 Up".
But not anymore. I detest them.
Yesterday was Jacob's Valentine's Party at school. Of course, the first thing he asked when he knew about the party date was if I would be there. And of course, I said "yes" not wanting to disappoint my son or have him be one of the few kids without a parent there.
The party itself was fine, your typical school party with cookies, treats, and bags decorated with hearts and filled with Valentines. There was a craft that Jacob struggled with and didn't want to do, but finally he did glue two googly eyes on a heart and made a smile, a half hearted attempt at a Valentine for the baby sister. And there was a game, that again proved to be a challenge for Jacob where he was to suck through a straw and pick up conversation hearts. But as I looked around, I realized that Jacob was not the only one struggling with this, and it brought some relief.
But the real reason I dislike school parties is, it is quite apparent that Jacob is on the outskirts.
In October when I helped with the Halloween party, Jacob's teacher had announced that the everyone could shift their chairs around to sit near a friend for the party. As I watched Jacob trying to figure out where to go, my heart hurt. No one was calling out, "Jacob, Jacob, come sit by me!" He ended up scooting his chair closer to a group of girls in the back who thankfully seemed ok with it.
It's always been like this every year. Thankfully this year his classmates are much more tolerant and accepting of Jacob. In past years, I witnessed kids being just plain cruel to him at parties. Many times, they wouldn't hesitate to tell me that Jacob annoys them, or they would ask questions, "Why does he make that noise?" or "Why does he always talk about baseball?" The worst was when a boy in his class walked up and yelled as loud as possible in Jacob's ear, knowing how Jacob did not like loud noises.
So yes, it could be worse. Jacob's new school has been a good fit for him. And his classmates are good kids. But as a mom, that doesn't make it easier seeing the rest of the class connected, and your own child alone.
Oh, I try to connect with the other moms hoping that will help. But it seems like they are all connected as well. You can tell that they know each other outside of school from playdates, birthday parties, or sports. And as much as I try to connect, it just doesn't happen for whatever reason.
The thing is, Jacob either doesn't care, or doesn't notice, I'm not sure which one. On the way home from school after his party, I asked him who he liked spending time with in his class. He told me "no one really". He then changed his mind and named two girls that were nice. But the thing was, it didn't seem to bother him.
So I know it's my problem. It bothers me. It's hard to see and it just tears at my heartstrings for my son. Why? Because I think that is every humans desire, isn't it? To connect? So if it doesn't bother Jacob, and he doesn't seem lonely, and he seems happy, why can't I let it go?
Because I want that for my son. I want him to have those connections. Those true friendships. And I know the importance of friends.
We try to help Jacob socially. He doesn't always know how to interact with his peers. He wants to be their friend, but many times his intensity pushes them away. So my husband and I usually take on that role of helping him make that connection with other kids. But it's hard to know when to give that gentle push, and when to realize it is ok.
Yesterday afternoon, when we pulled up to our house, Jacob saw about 8 kids from the neighborhood playing basketball. He quickly exited the car and ran down to join them as fast as his legs could carry him. For the next hour off and on, I checked on him, finding him still enjoying himself playing basketball with the neighborhood boys.
But after about an hour, I looked outside to find Jacob in our front yard with his yellow plastic bat hitting whiffle balls across the street. I could tell he was deep into his own make believe baseball game, imagining he was all of his favorite MLB players.
As I looked down the street, there were all the neighborhood boys still playing their basketball game, while Jacob was doing his own thing.
Jacob finished his nine innings, and came loudly through the door. I asked him why he had stopped playing basketball with his friends.
He answered matter of factly, "Because I wanted to play baseball, Mom."
He had chosen to be on the outskirts. He had played with his buddies, but he was done. He wanted to be by himself doing what he loved most. He was ok with it.
Now I had to learn to be ok with it, too.
Monday, February 11, 2013
It Was Time
It's hard for me to believe it has been a year since I started my blog. Time goes so fast. No matter how hard you try to hold onto it, it slips away unnoticed.
I admit that a year ago, more days than not, I was wishing them away. We were in a bad place. Jacob's anxiety was at an all time high. Our life was in a tailspin and we were just barely staying above water.
As much as I would like to slow time down to remember each smile, laugh, and moment with my children, I can't say I would want to return to where we were a year ago. The days were long, the nights even longer. Time couldn't go fast enough. Every night was a meltdown filled with screaming, crying, hitting, and pure fear. Jacob was scared of everything at the time. I remember thinking, "Is this our normal? Is this going to be our everyday for the rest of our lives? Is this all our baby girl will know growing up as she observes her big brother?"
Last year, Jacob's meltdowns started coming more and more frequently and lasting for hours. The littlest things were setting him off. Nights were awful as Jacob's anxiety was at a peak. Every night he would cry sometimes for hours about things that scared him. And it seemed like new fears were popping up out of no where. It felt like our world was spinning out of control.
It was time.
As much as my husband and I were opposed to medicine for the longest time, we knew something had to be done. We had a prescription for anti anxiety medicine for Jacob before. We had even filled it, but after reading all the scary literature that comes with it, we opted to wait it out. But this time was different, something had to be done. Jacob's doctor had told us we would know when it was time. Our life was being upset daily at this point. It was defininetely time to give medicine a try.
No parent WANTS to give their child medicine, particularly one that could alter their personality and has tons of undesirable side effects. Jacob had never even had cough medicine in his life, and here I was going to give him something that came with a warning sheet from the pharmacy, which of course brought new worries for me.
Would it change my son including all the wonderful things I love about him? Would it make him sleepy as it suggested or change my energetic son who is always on the go? Would his tummy hurt like the pharmasist said to expect? Would my little boy no longer be the same from this day forward?
All those thoughts were racing through my head questioning if we were making the right decision as I helped my son with the syringe giving him his first dose.
That first day was hard. I was a wreck nervous for all the possible outcomes, referring back to the possible side effects sheet numorous times. But with each day it got a little easier to give my son his medicine, to where soon it became old hat.
And with each day, the meltdowns became less, the fears subsided, and my son's smile returned.
I'm not saying medicine is the solution for everyone. I still have a love hate relationship with medicine for my kids. Sure anti anxiety medicine changed our life for the good in so many ways, and I am grateful for that. But I am still leary about giving anything to my kids. In fact, we have a prescription for ADHD medicine that we have had for close to four months yet to be filled. We just can't do it, add another medicine to our child. I've read too many horror stories. Like our doctor told us before, we will know when it is time, and right now, it's not time.
But I know not to get too comfortable. I don't even let myself think, "Is this our new normal?". Instead I continue on the journey given to me enjoying each day and treasuring every moment while time continues to slip away.
And I thank God each day that we are in a good place, a much happier place than we were a year ago.
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