Sweet, Sour, and Everything Between

image

My husband and I call our disabled child the “Sour Patch Kid.” If you have seen the commericals, you will know why. The slogan for the candy is, “sweet on one side, sour on the other” and their commercials usually show one of the little candy kids getting into trouble followed by a cute hug or something similar. I believe my son has studied these commercials in depth so he can perfect the art of the dual personality.

Typically he saves his sour behavior for home. From the time he started early education (at 4 months – he’s been working at it a long time) he was often praised for his good behavior while at school. My earliest memory of his “patchy” behavior began in the first year of early intervention. One of the biggest issues I saw at home would be him beating his head on the floor. I would take him to class and discuss the matter with the therapy staff and they could not believe he would exhibit that behavior. He would continue to do exceptionally at school and when we got home, he would be at it again. Even as he got older, he would have the staff wrapped around his finger and again when he got home, he’d do something like whack me. We have discipline in place and he sometimes ends up in time-out frequently. Most of the time it helps to curb his behavioral problems but he is continually testing the water with me. Today for example, we were waiting for his bus and it was running late. He was waiting inside dressed in his outerwear. I know it can be hard for him to understand why he has to wear it when he feels like he is going nowhere. He had taken off his gloves numerous times, threw his hat, jumped on his sister and other little things to show his displeasure of having to feel like a penguin. I sat him in time-out twice and the last time he sat he was working at taking his gloves off again. I reminded him that I wanted the gloves on his hands and he needed to behave. (I should mention the bus was a half-hour late). He didn’t like the whole morning and head-butted me in the face. I have a high tolerance for all kinds of ill behavior but getting hit in the face in any capacity is my least favorite. He got more time on the timer for hitting his mom. Shortly after, the bus finally arrived. He gets to the bus and out comes his sweet side. “Sigh.” Fast forward to this afternoon, the bus pulls up and he is happily calling for me. He waves goodbye to his friends and jumps in excitement as the bus pulls away. On the way back to the front door, he whacks me. “Really, little dude?”

This behavior has baffled us since he started showing signs of behavioral issues. We were assured it is normal but no one has any real advice. They refer to the period of time before the kids are ill behaved at school as a honeymoon phase because they eventually start the same problems at school. I am thankful that has not been the case with my little guy. He is still just as sweet as can be while he is at school and much more rotten for me. It is sad because I often feel like everyone else gets the best of him. The most frustrating thing is hearing from family how well he behaved he was until we walked in the door. That comment happens a lot and we always have the same answer as to why it happens. “We don’t know. We are just as lost as you.” We have no answers, just theories.

On top of trying to unravel his medical issues, we have the behavioral problems as the cherry on top. It’s daunting. Some days I feel like he is in time out three times more than the other children, but we have decided to be consistent as possible and require him to follow the same rules as the other children. Although he is allowed an additional warning or redirection of behavior. Nonetheless, he requires and demands a lot of attention, sometimes using the sweet and cuddly side or the sour side. I prefer the cuddly side and no matter his mood, I try to sneak a hug and kiss in, even if he doesn’t like it.

He recently started objecting to everything that happens around him. The staff at school have been trying to teach him how to use his voice to ask someone to stop bothering him (an issue because he is in a specialized classroom with other special needs children and he does get hit). That is all he does at home now. He understands the words, just not when he should use them.

I hug him. “Stop!”

I tell him, “I love you.”

“Quit it!”

One of the other kids sit next to him. “Knock it off, okay?!”

The baby cries. “Stop it, baby!”

He is learning what they are teaching very well. I just wish I could interact with him with less yelling.

My theory – he knows home as his soft place to fall. He is comfortable here and he knows he can take his frustrations to me, or slap them on me, whatever works. He has a gap of cognitive development that has slowed his language and prevents him from being able to communicate how he feels or what he wants. If I tell him that he can’t throw a ball in the house, I could explain why but he doesn’t understand. He has bad days where he is more tired or weak than usual and he is unable to convey that to me. He has no way of understanding why he feels that way. He has to be frustrated so he takes it out on the one person with whom he feels the most comfortable, me (or his dad when he’s home). I am stern with him and I have yelled. Every scream, hit, head-butt, and slap I take chips away at me. It is a crash course in patience every day.

Today when he came home, he crawled in his beanbag chair, covered up and fell asleep before I had time to ask about his day. It happens a lot. He comes home from school and crashes. Today he had a seizure at school so when he got here, maybe that smack was his way of telling me about that unpleasant event and how it bothered him or made him tired. He comes home and he feels like he can be himself and isn’t that what we all want? I don’t like his ill  behavior and we will continue to work on it but I know it’s something we just have to deal with. Maybe I will get lucky and he will let me off with just a “You be nice, Mom,”  as he pulls away from another one of my attempts to hug him. I will take what I can get and readily volunteer to be his safety net. Tonight he slept through the noise, dinner, baths and craziness of our evenings. It breaks my heart. His disease steals so much from him. It steals time with him away from me. My time with my little buddy is precious. People close to our family forget how sick he is. If he seems or looks okay than they think he is okay. The truth is, he has more going on than most people have to encounter in a lifetime and does pretty awesome. I wish more people would look past the sour patch and remember there is a little boy inside missing out on so much at the hands of his disease. I know I’d take any additional time with him I could get, sour patch and all.

*d*

Advertisements

A Hard Pill to Swallow

image

It’s hard to believe any of us ever catch on to the English language. It has a multitude of words with multiple meanings. For example, two of the many meanings of the word “trip” is journey and misstep. How do my children ever decipher what I mean if I were to ask, “Do you want to take a trip?” How do they know I am not getting ready to come knock them over? Or why are they not equally as confused after hearing ‘tennis match’? Is it a stick to burn a tennis racquet? Maybe a date between two tennis players? It is the frequent use of these words in real life that help us understand how we intend to use them. When that fails, out come the kid’s typical one hundred questions. Experience and knowledge help decipher the true meaning behind our words.

Words are very powerful. When the meaning behind a statement is misunderstood, it can cause havoc. When a statement is taken out of context, the same mess can occur. Then the problem would no longer lie with the person behind the words, rather with those who hear them. I get rather disgruntled when something I say is misconstrued or taken out of context so I try to make what I share verbally clear. That can be hard for a shy individual such as myself. I have to sometimes think very hard to make simple conversation, let alone a complex conversation that could change the way someone views me. Miscommunication can be a hard pill to swallow, or do I mean a pill that’s hard to swallow….. “Geesh.”

The only way we will ever know what others are trying to say is to ask questions and be knowledgeable. My biggest pet peeve is social media. There is no filter for the mess spread through social media. It is a great place to take one sentence of an entire forum and twist it to confirm the end of the world. People read, comment, or forward without finding out if there is truth behind what they are reading or sharing. I can laugh and pass off a good part of this, but when it comes down to respecting others, everyone should make an effort to find the facts and speak the truth. Maybe I am barking up the wrong tree, so to speak. Gossip isn’t a new problem and it has always spread like wildfire, long before the internet. Is it more important to form an opinion of someone based on what you want to believe about them or what you know? I know the easy answer, but what is the right one?

The solution is respect and love for eachother. Friendships should be based on what is inside and love above all. I may share my personal opinions on life with those around me but I do not anticipate them to change and follow my beliefs anymore than they can anticipate me to conform to theirs. It is mutual respect. Remember, when all else fails, the best advice is: BE KIND. Kindness goes a long way and it requires little or no understanding of another person’s beliefs so pass it on. It’s a shame when we miss out on the wonderful diversity of the human existance based on misinformation.

*d*

The Rose Colored Glasses

image

Beautiful is the view from rose colored glasses. The dreamy spectacles enchant the lackluster world. Nothing can spoil the view when the world is tinted in the hue of rose. Storms roll in and candy colored drops fall from the sky. Just open your arms wide to receive the gifts imparted from a world radiating a floral glow. All have worn them and all have felt immune to the world. The newly in love, the couple having their first child, or maybe newly acquired wealth. While in this transient state, nothing else matters. No words or advice can penetrate the feeling. I was there many times. It felt glorious and no one could change me. All was right with the world and I had all the answers. I only wanted to do as I wished and no one could challenge my flawed beliefs.

Time still passes when in possession of new and pretty things. The dust from the journey starts to tarnish the pretty rose glass, a few stumbles toss and scratch them, and over time, they aren’t as nice as they once were. Some people rigorously try to replace the feeling with a number of different things. Yet, time wears down beauty and life refuses to stay roseate. So when it comes, maybe it’s best to celebrate and relish in the feeling. Everyone has their time when the sun shines a little brighter, the road traveled is smooth, and the air smells as fresh as a new spring day. At this time, some plead for time to crawl. Or even stop. These are the moments that make up the most perfect of memories.  Remembering can flood you with emotions and feelings just as fresh as when it happened. When things don’t seem as splendid, these are the best moments to remember. They act as a glimmer of light when it has been too long since life looked rosy. I often like to remember a time before diagnoses, the days my children were born, or when my husband and I fell in love.

Looking back can certainly swell my heart with joy but it can also remind me of my own ignorance. I don’t like parts of the person I once was. There was a time I was so high on this feeling that I thought I had it all. I had all the answers and I didn’t need anyone’s help. I was ignorant to the people closest to me and that had to change. The only unacceptable ignorance is the ignorance that refuses to be changed and I was full of it. I thought I knew more than people with a lifetime of experience, I had strong opinions of many things with no personal experience , and the only things that mattered were the ones that surrounded my life. I allowed myself to boast but was unable to look past the end of my nose. I had fallen from my perch many times and usually walked away unscathed. I had to take a few big falls before I finally broke. There were times I couldn’t get up. I spent a lot of time kneeling at my broken life, trying to put the pieces back together. Some parts of it are still not put together.

A lot of people pass along wisdom during times of tribulation. Many people quote the saying, “God doesn’t give you more than you can handle.” The more hardships I experience, the less I like this quote. I know I have been given more than I have been able to handle. This quote has made me feel inadequate. Where was this strength equal to the turmoil I was facing? Why was it so hard to pick up the pieces of my rose colored life? I was broken down until I was folded over with my face resting on my dusty hands. There was nothing left but to lay down my ignorance and plead for help. I think we will all be given more than we can handle alone. There are times we must silence ourselves, kneel down, and ask for help. I have replaced this saying with one of my own, “God will give you more than you can handle because breaking you down is the only way He can get you to kneel.”

In those most dismal moments you can choose to desperately hold on to the beauty that is slipping away or you can kneel. You can cling to the ignorance that refuses to change or give up your turn peering through the glass and find something deeper. The only way I was going to learn was to be broken.  I wasn’t changing any other way. Something terrible would occur, I would reflect and realize I needed to change. Time would pass and I began to forget. I would forget the gifts suffering allowed me and went back to my old ways. I was stubborn and it took a lot to change me. I only wanted to be happy when I was peering through the rose colored glasses. It was easier that way. These days, I try to find happiness even when I am broken and dirty from the journey. I admit, it can sometimes take effort searching for a reason to be happy. That’s when relying on those reaching out to help and something bigger than yourself is worth it.

The world can give us many reasons to lose hope. Several years ago I wanted to change everything in my life. I wanted to move, find another job, and start over. I had lost hope in other people. My plans changed when my son was diagnosed. Those same people I thought I lost hope in began to reach out to my family. I found the love and compassion I had feared was lost in this world and it took my own devastation to see it. Disparity is not the end of happiness but possibly the best way to find it in the most unlikely way.

*d*

Electrified

electrified

I had an interview last Monday. I went into it feeling very confident and relaxed which is something that, as I’ve said, never happens unless I don’t really want the job. Except I did. The fellow had called me the week before and we’d chatted for something like a half-hour on the phone. He was very easy to talk to and everything he was describing about the position seemed to be exactly what I was looking for; it was the missing piece to fill a void I’d been unsuccessfully trying to cram other jobs into. He said he was excited to meet with me the following Monday and I could hear in his voice that he was. I was giddy when I hung up the phone, like a thirteen year old girl who’d just talked to the boy she liked.

I have this bad habit of putting all my eggs in one basket, as they say, and I kept trying to rein myself in. It didn’t work and I went to the interview feeling like I’d already gotten the job. We talked and talked—for over two hours. It didn’t feel like two hours and I was shocked when I left and saw the time. In closing, he’d said he was still interested if I was and of course I agreed. I asked if he had others to interview and he said yes. I asked that he let me know about the job either way and he said he would.

I was making dinner the following night when he called. Somehow, all the confidence I’d been exuding melted away when I saw his number on the caller ID. At the same time I was thinking that he couldn’t possibly have interviewed that many more people in one day, I was also considering that he’d had time to think about my interview and decided I wasn’t a good fit. As he spoke, I felt myself getting electrified. He offered me the job. What was more flattering was that he said he didn’t interview anyone else after he spoke with me. I thought I might spontaneously combust when I hung up the phone. I still feel like a live wire.

I start tomorrow. I feel really good about my chances of doing big things from here out. For so long, I’ve been spinning my wheels and getting nowhere. I wouldn’t know where to go even if I’d had traction. Now, at least I have a direction to go in, a path to cut and shape where previously there wasn’t one.

the path untraveled

~L~