Tuesday, April 29, 2014
I recently met another autism mom. Her child had recently been diagnosed. I could see the sadness in her eyes. I could hear the fear in her voice. I could feel the hurt in her heart. I understood. I recognized it all. I remembered so well, all of those emotions. I tried to comfort her. I tried to give her words of encouragement. I knew that no matter what I said, only her own journey would lead her to the comfort she needed. Truthfully, my words could only help sooth the pain she felt. The only remedy to cure her heart would be experience. As a person, on my own journey, I could only offer hope for the road she has yet to travel, because I have already been there. Lucky for us both, many parents have gone before us, paving the road, searching for answers, fighting the battles to help all others who would follow.
After meeting this mom, I began to reflect upon my own experience. I remember being scared, and confused, and feeling hopeless at times. I remember looking for many answers I could not find. I remember feeling a loss for what I wanted for my child. I knew that life would be tough for him and it hurt. I knew that my job as a parent would be vastly different than I had imagined. I remember watching my husband question “why?” in anguish as he went through so many emotions. He fought with denial, and pain, and anger. I fought with trying to fix it all and heal the pain we were feeling.
I wish I could go back 8 years and tell myself so many things. First, I would tell myself to breath and take it all in. Enjoy your little boy for everything he is right now because he will only be little once. I would tell myself that life will be hard so many days, but there will be some great days along the way, so take it all in stride. Soak up all the knowledge you can from other parents who have already gone through it. Their information will help more that any text book or doctor ever could. Most importantly, I would tell me to stop being so hard on myself because I was doing the best I could. Don’t listen to the criticism. Only listen to the voice in your heart telling you to keep going. In the end, it would all be okay. It won’t be easy, but it will be worth it.
Autism can be a lonely place. It can be a place of judgment, full of criticism and unacceptance. I see it every day with my Hunter. I see him struggling in a world in which he does not always fit. I feel his desperate need to feel better about himself. I see the pain in his eyes. As his mom, it hurts to see this, not knowing if he will ever really find a place where he feels safe.
We were fortunate to be able go home for Easter this year. We have been blessed with great family and friends who love us. Hunter thrives in this existence. He feels secure. He feels happy. He can be himself. It was so wonderful to watch him interact with his aunts, uncles, and cousins. It was as if an entire weight had been lifted off of his shoulders. He did not have to put a wall up or wish to be anyone but himself. It makes me want to wrap him in this cocoon of safety every day. It makes me so grateful for those around us who truly love him for all the quirkiness and brilliance that encompasses my beautiful son.
I know that I will never be able to protect him completely from this world. Life will not always be easy for him. I do believe that he has been given a special gift. The gift of love, encouragment, and strength of his amazing family. No matter what anyone says to him; no matter what difficulties he faces; they will always surround him with an armor made of loyalty and love passed down through the years. Yes, no matter the challenges he faces, he has been blessed! I am forever thankful!
Monday, April 7, 2014
So here’s how I really feel…standardized tests suck! That’s right, I said it!! Whether they are called ISTEP or STAAR or any other acronym, they are absolutely, positively insane. I am sure that many of you out there disagree with me, and that is perfectly fine. From the week I’ve had due to the stress of this test, my opinion is pretty much set in stone. From the number of articles I have read and Facebook posts I have seen this week, I know I am not alone.
The STAAR testing craziness started a few weeks ago for us. Hunter had been acting differently. We were trying to figure out what has changed in his diet. We were wondering if he was staying up at night or beginning to get sick, because he just wasn’t acting the same. He had a blank stare, his speech was slurred, his attitude was absolutely awful. Something was seriously wrong.
Then, the day before the tests began, he came home completely covered in ink. He had written all over himself. There were grids drawn all over his arms and legs. He told us he did it because he was nervous about the tests the next day! There it was, the mystery was solved!
It only takes a quick look at the new statistics that came out last week to see how much things are changing. Currently, 1 in 68 children have autism. A staggering 1 in 42 boys are being diagnosed. This means that we have an entire new generation of Einstein’s and Bill Gate's currently going through our school systems. These students don’t necessarily fit into a perfect box in the way they learn. They think about things differently. They learn differently. However, we are judging them (and their teachers) according to how well they do on a test that absolutely does not show what they actually know. We are not testing them on their brilliance, but on a made-up set of standards.
These tests cause crazy changes to their daily school schedules, when change is not good for kiddos on the spectrum. We are asking them standardized questions, when they don’t think in a standard way. We are telling them over and over the importance of doing well, which only increases their anxiety levels. We are basically telling them that societies gage of how well they are doing in school is all based on how well they do on a test that is more than difficult for them. It does not test them the way they learn.
Things have to change. Our way of thinking has to change. We are raising an entire generation that is filled with children on the spectrum, and unfortunately, those numbers are showing no signs of slowing down anytime soon. We need to start teaching them the way they learn, instead of trying to make them fit into a certain “learning” box that has been created.
I don’t claim to have all the answers. I’m sure that there are many statistics from the powers that be that show how important these tests are to the education of our children. I am just a mom who sees that my son is missing out on learning because these tests don’t meet him where he is. Unfortunately, I think that many children are in the same boat.
In my humble opinion, making changes will only benefit all children (on the spectrum and off). We are teaching in order for them to take a test, instead of teaching them the gift of loving to learn! We are stripping our kids of so much. We are teaching them that these tests mean so much in their lives, when in reality, they don’t mean anything. We are putting undo pressure on them. What happened to the importance of learning basic skills, letting each child be an individual who had their own set of talents, and allowing our teachers to do just that…teach!!!
Wednesday, April 2, 2014
“You don’t know me at all.” That is his new catch phrase.
“Hunter, please go clean your room.”
“You don’t know me at all.”
“Hunter, I know you have homework. Please do not lie to me.”
“You don’t know me at all!”
He is trying to be hurtful. He is a teenager. He wants to put me in my place because I am the one available. I just ignore him and continue with my message to do his homework or clean his room or explain why he can’t continue to lie to me, but the truth is I want to say so much more!
I want to yell at the top of my lungs…
I know you better than you may ever know yourself. I know that you are amazingly intelligent. I know that you knew every NFL football team before you were 3 years-old, including players, their numbers, their positions, and the college team they played for before going to the pros. You know more about history than I could ever know. I don’t have any idea how you are able to retain all of that information.
I know you have an amazing connection with animals. You seem to speak to them on a different level. Sometimes I think it is easier for you to connect with them than people. It is like you have your own language.
I know that no matter how much you hate me for doing it, I must make you clean your room, brush your teeth, take a shower, and use your table manners.
I know that when you strut around like you are so confident, you are actually really scared and unsure. The whole world awaits you, but so much of it seems like a puzzle. It is exciting and scary, really scary to you. Even though you think I don’t know anything, I know you lean on me for the best advice I can give. Unfortunately, I know sometimes I fall short, but I’m giving it my best buddy.
I know you like girls with pale skin and blond hair (this mom really didn’t need to hear this quite yet)! I know that you don’t quite understand the dynamic of the whole guy/girl thing, but you are learning. It just might take you a while longer for you to get there.
I know that you love your Dad. You look at him with those admiring eyes. I hope you will grow into the kind and loyal man he is someday. He may never say the words to you enough, but he loves you more than words could every say, and he would give anything for you to never hurt or struggle.
I know that I will never stop telling you how much you can achieve in your life. You have been given amazing talents. I can’t stop pushing you to set your goals and give it your all.
I know you hate schoolwork. I know it is not easy. I know some of the concepts are so tough for you to understand. I know that there are so many other things going on in your mind and it is hard to shut down in order to focus.
I know that no matter how hard this life gets and no matter how many times you fall down, I will be there to help you back up. When you are unsure, I will try to help you understand. When you want to quit, I won’t let you.
Hunter, Hunter, Hunter, I know you all right. I have known you since the first time I looked into those big brown eyes and knew my purpose for being. I look forward to knowing you more as you grow on this journey of life. There will be ups and down and there will be struggles, but in the end, that is what make life so much sweeter. I love you!
Tuesday, April 1, 2014
As he left the car and walked into school, I couldn’t help but think about how far we have come and how much further we have to go. He had a field trip that day, and he had put his own outfit together. This in itself, was amazing. A year ago, he would have thrown on whatever he found on the floor or whatever I had laid out for him, but not today. Today, he had put on his favorite football jersey, “flat-billed” hat, perfectly matching “Elite” socks and “Nike” socks. He had even sprayed himself with cologne. He strutted into the school feeling good, dare I say “cool”.
In my mind, I couldn’t help but reminisce about the many years I had hoped desperately for easier times as he timidly walked into school, a place of insecurity and unacceptance. A place he hated.
Now, in these treacherous years of middle school, he is somehow finding his way. No, these years are not the easiest. Most days at home are tough. His hormones are raging; his voice is changing; he’s growing at a rapid pace, but he has found comfort amongst friends he has made at school. He feels like part of something.
Sometimes I fear that his safety is false. I know that many of the friendships he has may not be true blue friendships. Middle school can be brutal. I contemplate how hurt he might be if or when he finds out that these kids are using him or making fun of him behind his back. For now, however, he feels like “one of the guys” and that is important.
I have not fallen prey to the idea that some cools socks, shoes, and hats will help him fit in with the other kids. I am not naive enough to think that these things will help them overlook the social clues he misses or the other ways he does not fit the mold. I just pray that in these years of turmoil, when he is fighting and clawing his way out of childhood into the changes the teen years and adulthood will bring, he will glide right through without a scratch.
I know I am fighting a never ending battle. I will fight the battles as they come. On this day, my battle was to make sure he was excited about the field trip and that he felt good about himself. From the strut he had walking into school, I would say we won this battle!