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Wednesday, October 15, 2014

A-U-T-I-S-M


The story of how I found out about Hunter’s autism is kind of amusing. Well, it is amusing now, but it wasn’t so much then. Now, it is just another leg in our journey.

I was pregnant with my little guy. We were in the car on our way back from one of Hunter’s t-ball games and my hubby said to me, “Hunter’s pre-school director called and they think he might have A-U-T-I-S-M.”

Apparently the school, knowing I was pregnant, had called my husband as not to upset me. Yep, they didn’t want to upset me, so they left it to him to spell it out to me in the car with my 4 year-old in the backseat.  I remember staring at the road in front of us and thinking, “Now what?” and “What is Autism” and “What does this mean for our lives?”

When we first received the news, it was tough. I hit the ground running right away. I made appointments with doctors. I did tons of Internet research. I spoke with teachers I knew about what to expect and what they had observed in their students with Autism. Still, I struggled. I struggled with the opinions of others. I struggled with the “Why us?” and the “Why not us?” questions. I fought the schools. I questioned the doctors. I went into “fixit” mode.

From the moment my hubby spelled the news to me, he had a fear in his eyes. Actually, he had anger in his eyes that was a well-placed cover-up for the fear he was actually feeling. This was not what he had expected. This was his first child. This was his first son. This was everything he had hoped for and dreamed of for many years. The tears in his eyes when Hunter was born were there because of pure joy for this life we had brought into this world. Now, he was scared that the life of this beautiful little boy was going to be hard and scary. He went into denial for a while. He fought the good fight that nothing was “wrong” with our little boy.

Then, one day, not long after, he took my hand and we began this scary, uphill, and amazing journey together. We have had many fights. We have had many struggles. We have had way too many tears to count. We still have all of those.

A lot has changed since that night in the car when neither of us really knew what “A-U-T-I-S-M” was or where it would take us. We have learned a lot as a couple. We have learned how to work together. We have learned how to pull each other up when we are down (and there are lots of those times). We have learned how to parent by trial and error because sometimes that’s all you can do. By trial and error, we discovered that I am “bad cop” and he is “good cop, “so we work that to our advantage whenever possible.
The research shows that divorce rates are high among parents of autistic kiddos. I get it! Trust me, we’ve been there many times. For us, this journey just works better as a team, and that’s how we will stay! Following this A-U-T-I-S-M path one day at a time.

Thursday, September 18, 2014

The way-to-cool-to-talk-to-mom-until-trapped-in-a-car, teenager

I love the rides to school in the morning. Well, I should say, I love some rides to school on some mornings. Others are filled with a lot of loudness and craziness from a couple of boys in a vehicle way to small for a mom who hasn't had a sip of coffee.

Anyway, back to the story...I really do enjoy most mornings in the car, especially once I drop my little guy off, because it is just me and the teenager. The way-to-cool-to-talk-to-mom-until-trapped-in-a-car, teenager. Yes, this is my time to have deep discussions about girls, life, school, mean kids, nice kids, hopes, dreams, you name it, and he can do NOTHING about it (insert evil laugh)!!!

This morning, our morning discussion was about school. It is his fourth week, and he is already behind. Year after year, we have had the same issues with school. He has had trouble staying organized, he has struggled to keep up with his homework, he has lied almost every night about the amount of homework he has. Schoolwork has always been one, big, constant stressor for our family.

This year, my fears are magnified due to the fact that he is an 8th grader. This is it!! If he can't get his organization figured out by the end of this year, how will he ever handle high school! If he can't understand the importance of homework, how is he ever going to pass high school and move on to college.

During our 15 minute discussion this morning about his grades, I made the comment to him that when he lies to me about homework and doesn't turn his assignments in on time, he is only hurting himself. He looked at me and said, "You don't understand me at all! It is not that I don't want to do my homework, it is that my brain just can't take any more. It is tired and exhausted just can't do anymore!"

Suddenly, it smacked me in the face! Why did I not comprehend this before?? My son has ADHD. His brain is moving at a much faster pace than mine will ever go. It is going non-stop until he goes to sleep at night.  My son has Asperger's syndrome. His brain is having to work double-time just to process things that come easily to others. He is starting at 7a.m. By 3, 4, or 5 o'clock, his brain has to be exhausted. I can't even imagine what it must feel like to be him. Then, I am asking him what homework he has, and his mind is saying "I can't do this", and his mouth his speaking the words, "I don't have any."

For the first time ever, I feel like I understand his struggles with school. I would love to say that I feel so much better now, but I don't. Actually, I am even more fearful of how hard life is going to be for him. How is he ever going to handle college or a job or doing homework with his own children, if his brain just can't keep up?? I can only hope and pray that eventually, it clicks. Somehow, someway, he will figure out how to make this all work to his advantage. I hope that this all happens sooner than later.

I don't have all the answers, but for now, I am just thankful for those 15 minutes of a trapped teenager in a car. My son, who I love so much and understand just a little better.

Monday, September 8, 2014

The invisible shield


This was a journal entry of mine from last week.

I look into his eyes. I feel his pain. I see the fear. I hear the words of hate that spill from his mouth with an eerie ease. I know the words are not truly meant for me. Instead, he says them to me as a way of disguising everything he feels inside.

I put up my shield...the invisible shield that is meant to protect me from the pain and hurt his words cause. The shield is dented and damaged. It still does its best to protect me, but it is not as strong as it once was.

God, Your love never fails, it never gives up on me.

It is so hard to explain the pain of watching my child with Asperger's struggle to find himself. The stage between childhood and adulthood is steep and treacherous, and for him there are so many more obstacles in the way.

I am "Mom". I am the one he trusts. I am the one he speaks to about his thoughts and fears. I am the one he turns to when no one else is around. I am the one at whom he screams and yells. I am the one who he blames for all of life's woes. I am the one who he knows with certainty will always love him.

I am "Mom". I am the one whose heart stings constantly from watching his pain . Who never wants to see him hurt. Who wants to teach him right from wrong. Who wants to teach him to respect but doesn't know how. The one whose feelings are hurt so often, but whose love is never ending.

Some days there are no right answers. Sometimes on those days when he is struggling and his words flow from his mouth like venom, my conscious, my head, my heart and my anger all mixed together in one large melting pot. Sometimes I struggle to keep that shield to my heart in place.

I struggle with whether the things he says are his personality or Asperger's. Does it matter?
How do I keep him from hurting others with his words? How do I keep him from losing important relationships because he does not know the right things to say? Does anything I say actually stick? Currently, my list of questions seems much longer than my list of answers.

There are very few things I am sure of these days, but I am sure that it is my job, as his mother, to turn him into a respectful young man. A young man that will one day turn into a wonderful husband, father, and friend. I am sure that my love for him, although not without mistakes, will never give up on my beautiful son.






Wednesday, August 13, 2014

My thank you note to Robin Williams



My husband called me on Monday evening. He said, “Hey where are you?” I started rambling about my day, and suddenly he said, “Are you sitting down?” His voice was different. It was soft and concerned.  I immediately walked out onto the patio and sat down. “Robin Williams is dead. They found him this afternoon. He killed himself, “ he said softly.
Suddenly, I felt like someone had shot me in the heart. I had this overwhelming emotion.  I felt silly.I didn’t know him. He wasn’t a family member. He was just a man I had grown up watching on TV and movies. Why was I crying?  Why was I sobbing?
Grant walked out onto the patio. “Mom, are you okay? What’s wrong?”
I assured him I was fine. I told him Robin Williams had died today and I was sad about it. “Who’s that, “ he asked?
Then I said, “You know the guy from “Night at the Museum, “ Teddy Roosevelt?”
“Oh yeah, he was funny!!” was all he had to say. Then he gave me a gentle rub on the back and walked back into the house.
I sat for quite a while.  I didn’t really have a choice. I felt like my legs just wouldn’t work right. As with all deaths, the finality was real. The fact that I would never see him do one of his crazy interviews again or watch him act in another move was too much to take.
Robin Williams has been one of my all-time favorites for as long as I can remember.  I have had his joke CD in my car for 10 years.  Anytime I was having a bad day (and the kids weren’t in the car), I would turn it on and feel instantly better.  My favorite skit was about Jesus’s brother Joe. I would just crack up! Somehow, after Monday, unlike the many times before, this CD won’t bring me the same happiness.  Sure, I will laugh, but it won’t be the same.
I thing that has always been so endearing to me about Robin Williams was his immense vulnerability. Sure he had a crazy potty mouth, but under it all was this amazing childlike quality. I always felt like I somehow wanted to give him a hug.
Monday night was hard. My girlfriend and I were sending text messages back and forth that only said his movies.  We could have gone all night with that game. His body of work seems endless.  Amazingly, so did my tears.  I capped my evening off with a big milkshake to ease the pain.
The next morning, my Facebook and Twitter were blowing up with the amazing tributes.  A few more tears flowed. One of the Autism websites I follow posted an article about celebrities who have Autism.  There was his picture. I clicked on it and the article explained that he was thought to have had ADHD and Asperger’s (the same diagnosis as my Hunter). I’m not one to believe in diagnosing other people.  I have no idea if Robin Williams had Asperger’s Syndrome (although the ADHD seems pretty much a given).
 I never really noticed symptoms of Autism in him.  However, this article made me have a better understanding of why my emotions were so high.  I loved this man’s humor.  I loved how he could turn my mood around in a second.  He seemed like a generous, amazing soul.  Most of all, I think I felt a connection to him in a special way. He was different, just like my Hunter.  He rambled on about one topic after another, seemingly having no direction (yep, that seems pretty familiar too).  Somehow, though, it didn’t matter. He was loved and admired because he had special gifts that no one else had. He was able to take his special talents and give them back to the world in the form of an amazing body of work.  I hope the same for my son and the many kiddos like him.
Robin Williams will be missed by so many.  He obviously had pain and ultimately it was too much for him to bear, but I choose not to dwell on that today. Today, I just want to thank him for the years of joy  and laughter he brought to my life.  I want to thank him for breaking down those walls for my son, and showing the world that it is okay to be different.  Actually, he showed the world that it is amazing to be different!!!
Thank you! Thank you! Thank you!!!



Thursday, July 24, 2014

There is no "3 strikes your out" rule in parenting

It is hard to explain how hard it is to be the sibling of someone with Autism. I do my best to help my Grant get by unscathed. I know I am failing horribly. He is constantly in the midst of breakdowns, appointments, arguments over homework, and major attitude. Even though the attention Hunter gets is not always good attention, it is still attention. Some days it is an exhausting, never ending, feeling hopeless kind of attention, but it is attention nonetheless.

Yes, this thing called "Asperger's Syndrome" has robbed him of so much. It is not a thief in the night, it is a constant loss of everything important to him. It is his IPOD case that is chewed up because of sensory issues. It is not getting a book read to him because I am so exhausted I fall asleep before it happens. It is my voice being raised at him for nothing he did, just my own pent up feelings. It is him wanting to look up to his brother so badly, but knowing he can't follow his path.

I try not to think of the pain in his heart because it hurts my heart too much! I try to give him extra hugs, extra laughs, and extra time. I try to tell him how proud I am of him. I try to let him know that he is an amazing person. I know it is not enough, but it is all I have.

I love car rides with Granster. It is just me and him.  No video games are getting his attention. No army guys or Hot Wheels cars are in sight. This is my time to lay it all out on the table. Normally, car rides are my time to teach him. This week, during one of those little car rides, he taught me.

He has been attending a camp this week. He has had a great time. He has played with amazing friends. He has had tons of activities. Most importantly, he has had time away. He has had a break from the craziness in this house. God knows he needs it.

I picked him up from camp on Tuesday. It is a short ride home, so I always start the conversation early. How was your day? Did you learn anything? What was the best part/worst part of your day?

There is "3 strikes your out" rule at camp for the kiddos who are struggling with their behaviors.
 I typically don't have these problems with Granster, so I said to him jokingly, "So, how many strikes did you get today?"

Him: "None!! But some kids got strikes for not listening and running around!"

Me: "I knew you wouldn't get any. You are such a good boy and make good choices!"

Him: "Yeah, well, I try to make good choices, but sometimes I don't. You know my emotions just get to me sometimes. I get depressed...I get sad...and sometimes I don't do the right things, but usually I try make good choices."

Me (driving the car trying to hide the tears streaming down my cheeks): "Buddy, I was just joking with you! I knew you would be good today! I didn't have any doubts at all! I know it is hard sometimes, but you do the best you can!!"

For a moment, he revealed a part of himself that he doesn't feel safe to reveal most days. He let himself be vulnerable. He spoke his truth. Yes, sometimes he has outbursts. He is in pain. He doesn't make the right decisions at the right times, but he is trying!

If I was living by the "3 strikes your out" rule, I would have been kicked out of the parenting gig a long time ago. I make bad choices. I lose it sometimes. I fall asleep before reading his book. I say things I don't mean, but I am trying! I am trying with all my might to raise two great men.

I want with every fiber of my being for them to know how much I love them. I want them to know that no matter what mistakes they make, I will be here to pick them up. I know that my hugs don't always make the pain better. My words don't always fix things that are broken. All I can do is try every day, and when I fail, get up and try again. There is no "3 strikes rule". There is just me loving my kiddos, making mistakes, trying my best, losing my mind, feeling lost, hugging with all my might some days, yelling with all my might others and doing the best I can!

Wednesday, July 16, 2014

Sometimes the things that make us "weird" in school make us awesome in life!




He came in and sat down across from me. He had a serious look on his face. I put the checkbook and bills down and listened intently. It looked like we might be here a while.
He said, “I have something I need to tell you.”
“Ok, I’m listening. What’s going on, “I asked softly?
“I am not popular. I have not been telling you the truth. Actually, I hang around the kids who are considered weird. I just wanted you to know.”

Let me rewind this story...
 I have heard over and over from him how popular he is. He has told the therapist that he is one of the popular kids because he wears cool socks. He has told my husband and I that he only hangs around the “cool” kids. He has told his Grandparents the same story.  We have talked to the teachers during teachers conferences and they have said that he is very liked by the other kids at school and he is very social. Sometimes he is a little too social and obsessed with one topic, but overall he is kind to everyone and well liked. My hubby and I were pleased with that answer.
We have often wondered how many of these friends he spoke of were real and how many were made up. We have wondered if they were “popular” kids being nice to him for the wrong reasons, which concerned us. We have often worried, as parents do, about his feelings being hurt.
We had come to the conclusion that as long as he was happy, we would just let it go. We would just keep an eye on things and keep asking questions about his friends. We would monitor texts and phone calls. We had a feeling that he was not fitting in socially and the other kiddos probably realized he was different, but we just thought he hadn’t figured it all out yet. We would just be careful and let him keep believing whatever made him happy.
Now, as I sat here looking at those big brown eyes and trembling lips I realized that he had known all along.
I asked, “Why have you been telling us you were popular?”
He answered, “I didn’t want to disappoint you.”
I felt this of wave emotion come over me. It was a mixed bag of feeling blessed that he was coming to talk to me and sad that he ever had to feel pain like this. I hated that he was feeling such doubt about himself and how we felt about him.
“Hunter, I am not disappointed in you. As long as you are trying your best at everything you do and being kind to others that is all I can ask of you!!” Then, I smiled at him and said, “Thank you for being honest with me. Now, can I be honest with you?

“Yes, “he responded shyly.
“I’ve know all along that you probably weren’t “popular”. I didn’t know why it was so important to you that I thought you were, but the truth is…I don’t care.  I wasn’t popular either. I would rather you not be popular at all because many times that can cause so much trouble in your life. I am much more concerned about you being happy, really happy. I want you to surround yourself with friends that care about you and who you can depend on no matter what life throws your way. I would much rather you have a few real friends than a lot of friends who aren’t good to you. That is how I live my life and it makes things so much better.“
He looked a little shocked. He kind of grinned at me. Then he said, “Please don’t tell dad, ok”
I smiled at him and said, “He already knows, sweetie.”
He said, “Grant told him didn’t he? I told him last year that I wasn’t really popular and I knew he couldn’t keep a secret.”
I chuckled inside at the thought that he thought his dad and I had to be told by his 8 year-old brother that he wasn’t really popular, but I said, “Nope, he did not say a word to us. I promise. We just always had a feeling that you were not as popular as you were letting on, but honestly, he doesn’t care either. Neither one of us do. We just love you for you.”
He doesn’t?”
“No buddy, he really just wants you to be happy!  Can I let you in on a little secret that you will find out for yourself in a few years?”
“Uh-huh.”
“Right now, this seems like the most important thing in the world. It seems like if you don’t fit in with that crowd, no one wants to be your friend. I understand that because I was your age once too. The real truth is that in middle school it feels like that, by high school there is still a little of that but you know yourself a little better. In five years, when you are done with high school, you will move on to college and it won’t matter who your friends were in high school. You will find friends with your same interests through classes you are in or clubs you join or dorms you live in, and suddenly, these people who didn’t want to be your friends will just be a distant memory. They won’t matter a bit. I promise it doesn’t seem like it now, but that is exactly what will happen. “
He looked at me like he thought I knew what I was talking about (at least somewhat) which is a rare occurrence these days. I went on to try to explain how I was not popular in school and girl in particular was really mean to me. I ran into her a few weeks ago, and the pain she used to cause me wasn’t there anymore. I had moved on. “I promise you that one day you won’t care about these people either, “ I said.
He got ready to get up and I said, “One more thing…you know the characters on Big Bang Theory?”
“Yes”
“Well, I know they are just fictional characters, but there are a lot of people out there just like them. Do you think they would have been considered "cool kids" in school?”
“No, “ he chuckled.
“Nope, probably not. Guess what? Who cares!! They went on to be so much more successful than the people who would have made fun of them in school, right?”
“Yes!”
“Yep, you can do the same thing! Sometimes the things that make us stand out as “weird or different” in school make us awesome in life!”
He stood up to go back to his game of Minecraft. He didn’t say a word. He just walked away in quiet contemplation. I just sat and thought a while about how no matter how many words I speak now or in the future, I will never take away his pain or insecurities. All I can do is try my best to let him know that he is so special to me, his family, and in this world.







Thursday, July 10, 2014

Sassy Aspieisms (courtesy of my 13 year-old)



Leaving orthodontist appointment...

Me: I need to run by the grocery store to pick up some things for a salad for dinner tonight.

Him: I don't want to go to the store. Anyway, why do you keep making salads for dinner? I can't put on weight only eating salads.

Me: Well, we are not having only a salad. Salads are just a good way to get the 5 servings of fruits and vegetables a day we need. I am just trying to keep our bodies healthy.

Him: Five servings of fruits and vegetables a day...where do you get this stuff? Where did you read that crazy fact?

Me: Well, just about everywhere!
Sassy Aspieisms (courtesy of my 13 year-old)

 

 

Me: We have to start limiting the amount of time you are on the computer and other electronics.

Him: Whining…where did you hear that?

Me: Your doctor says it is not good for your brain to have too much game time.

Him: I don’t believe it. I think it is a conspiracy theory. I will not believe everything I hear.

Me: It is not a conspiracy theory. Studies have been done showing the effects on children’s brains.

Him: I think it is just a way for doctors and scientists to make money.

Me: Well…I think they would make more money supporting the companies that make these games than going against them. It really doesn’t matter because you only get 2 hours.

 
 
Sassy Aspieisms (courtesy of my 13 year-old)

 

 

Driving down the road in the car…

Him: You are mean to me, bordering on abusive.

Me: Really…and why is that?

Him: You feed me too healthy. It is your fault I am this skinny!

Me: Yep, you must be right. It sure couldn’t be genetics or anything.

Saturday, July 5, 2014

Pillars of strength


 
Yesterday was the 4th of July. We went to a presidential library. In that library stood beams from the twin towers. The beams were not burnt, but rather showed the impact of the planes. The beams were bent, slightly mangled, but had withstood the tragedy with amazing strength.

As I stood there looking at the beams and watching videos that accounted for the horrifying tragedies of September 11, 2001, I could not help but reflect. I thought about the amazing human spirit that lives within all of us. Like those beams, when dealt a blow, we do not falter, but rather keep going. Like the amazing first responders on that day and the survivors who helped others by carrying them down 60 flights of stairs or using their shirts as a tourniquets, we rise to the occasion when there is a need.

Parents of children with special needs have to be beams of strength every day. Many days we have to pull from the depths of our souls and show amazing resolve to keep going.  My Grandmother and Grandfather raised 8 children. Their first child was born with a condition called Osteogenesis.  They were told very early on that he would not survive.  He defied the odds. He had numerous surgeries. He broke his bones more times than I can even count, but when he died at the age of 59, he had lived an amazingly full life. He could not play baseball, so he coached. He could not ride a bike, so he rode a lawnmower. He could not do many jobs, but he went through jeweler school and started his own business. He married. He had friends.  He lived life to the fullest. He did all of that with the support of his parents and his family. He was a sweet man with an infectious laugh who made everyone happy when he was around.

I often wonder, as the mother of a child with special needs, how often my Grandmother felt like bending. I contemplate how she managed to keep her strength. How did she continued to be the pillar of strength for him and seven other children, especially when I feel like I am breaking so many times in my own situation? I am amazed at her strength.

Today, I am thankful to live in a country, where like my uncle, my son has the opportunity to defy the odds. I am also thankful for the many special needs mothers, like my Grandmother, who have paved the way.  I am thankful for the mothers, many whom I consider friends, who I watch every day be the unbending beams for their children. Those moms who pull strength from the depths of their souls and keep going for their children.

 

 

 

Monday, May 12, 2014

Sometimes being a Mom is just about showing up!


This weekend was Mother’s Day. My gift from my hubby and my boys was to go horseback riding on Saturday. I can’t describe the feeling I have riding horses with my family. It is an amazing connection between all of us. There are no TV’s or video games, no chores and no work. It is just us, supporting each other and loving each other. Hunter feels at peace and is happy and more connected there than any place else I know. It is truly amazing how the disconnect from the rest of the world connects us with one another.

On Sunday morning, I woke up to Hunter’s smiling face in the doorway saying, “Happy Mother’s Day.” It made me smile. Soon, I was surprised with Starbucks coffee, muffins, hugs from my boys and sweet cards and treasured homemade gifts.  You know, those sweet gifts that are like gold to the melting hearts of moms everywhere. Grant had drawn a picture with his handprints inside and had made a picture frame for me. In the picture frame was a picture of him holding a sign that said, “She cheers for me at baseball games.” I began to tear up. He hugged me. I’m sure he thought I was weepy because of the picture frame. Well, that is partially true…

Sometimes I feel so badly for my Granster. He is eight and Hunter is pretty tough on him. Some days are indescribably hard. I know some days he feels beaten down. Some days as much as Hunter loves him, he unknowingly makes him feel unworthy and unloved. As much as I try to explain to Grant why things are the way they are, some days I know that words are not enough to console him. Sometimes I feel like nothing I can do will ever be enough.

I can’t make many of his days easier. I can only try to protect him and teach him how to deal with the many hard things that are thrown his way.   I feel many days like I can’t hug him, cuddle him, or tell him how much I love him quite enough to make up for the hurt he has inside. Sometimes I feel like nothing I can do will ever be enough.

On this day, Mother’s Day, my little boy taught me a very, very important lesson. Sometimes in life, it is all about showing up. It is all about cheering the loudest at the game. It is about sitting at the table as they struggle through the homework. It is about being there to wipe their tears when they cry and put band aids on their hurt knees.

This picture frame meant more to me than he will ever know. Those tears flowed from a place deep inside that he will probably never understand. That little plastic picture frame with a picture of him holding a sign, taught me that I am doing enough.

 On the days that I am struggling and tired and I just can’t take any more, I just have to show up with all I have left. On those days, when my love is overflowing for both of my boys so much that it hurts, but my energy is gone, just being their Mom and loving them is enough.

What an important lesson for all of the Moms (and Dads) out there to remember. We don’t have to be perfect. We might expect it from ourselves, but our kids don’t expect it from us. They already love us. We already love them. That is the most important thing! All that is left is showing up!!

 

The results of the IEP meeting...


After debating and emailing back and forth with Hunter’s resource teacher, I found out that Hunter had to be in the  IEP meeting to go over his goals for the future. After that, many of the students leave the meeting and go back to class, but Hunter had requested to stay for the entire meeting. His resource teacher really thought it was a good idea. I was not so sure, but decided we should give it a try.

I was so nervous before Hunter’s IEP meeting. I am always a little apprehensive, but knowing he was going to be there for the first time had me on edge. I was concerned as to how he would react to hearing things about himself. I know he does not take any kind of criticism well, so I thought it could be interesting.

The morning of his IEP meeting, he put on a polo shirt. My child who fights like Rambo to not wear any kind of collared shirt put on a polo shirt all by himself.( He wore basketball shorts with it,  but I’m not complaining…baby steps!) He said he wanted to look nice for the meeting.  I was a little shocked.

My hubby and I arrived a few minutes before the meeting. We watched as the teachers filed into the conference room. Then, Hunter walked into the office. He didn’t seem nervous or unsure. He was all smiles! He seemed excited!

The meeting followed normal protocol, but this time they addressed Hunter more than Jeff and I. They told him his rights, they told us our privacy rights. Then, the teachers introduced themselves and we introduced ourselves.

Each teacher began to tell their positive thoughts and concerns for Hunter.  One by one they said how sweet he is. Each one said that he is so smart and funny. We heard over and over that he is a great kid! They genuinely seemed to like my boy and it was an awesome feeling. They talked about how happy he seems and how much more comfortable he seems this year compared to last year. Wow, what a sharp contrast one year can make!

One of the main concerns was his socialization. No, not that he is not social, but a little too social. Apparently, my boy is quite the talker. In typical Asperger’s form, his main problem is knowing when to talk at the appropriate time, so we will continue to work on that.

They are also concerned about his handwriting and speeding through his work, which has been an issue with Hunter since his first day of school. I am pretty sure his handwriting is a thing of the past. I figured out a long time ago that his penmanship was never going to be legible, and I’m okay with that. Thank God for computers! We just have to get him to slow down when he is doing his work. We have our work cut out for us on that one.

I looked over at him as the teachers complimented him and talked about their concerns. He just smiled and took it all in stride. He threw a few one-liners in every once in a while (not always at the appropriate time), and we all chuckled. He was genuinely a part of the meeting.

They talked with him about what he would like to be when he is an adult. He told them a professional athlete. The room kind of fell silent. Every kid has the right to dream, so we will leave it at that!

He has graduated from speech for the first time since he was 3. He is now on a consult basis. He felt really good about achieving that goal. He will still have a resource teacher next year to help him stay organized. He still needs accommodations like more test taking time, shorter assignments, and a few small things to help him along the way, but it is amazing how many strides he has made!

Hunter did a great job during the meeting. I don’t think it was a bad thing for him to be a part of it. I did feel like I had to suppress some of my questions or concerns because I just didn’t want to bring them up in front of him or embarrass him. None of it was earth shattering, so if need be, I can bring those things up as they arise.

I was proud of him! I am proud of the young man he is becoming. I am happy that he stepped up and wanted to be part of his education, and I am glad that we made the decision to have him in the meeting. I believe it gave him a new level of confidence. I am always telling him how important his education will be for his future, and maybe somewhere along the way he heard me…maybe!

Saturday, May 3, 2014

I wish I could Google, “How to raise a child with Asperger’s syndrome without screwing up.”




Next week is Hunter’s IEP meeting for 8th grade. He asked me yesterday if he could sit in on the meeting. I told him “NO” at first. I don’t know why. It was my first instinct. He took me off guard. Then he said, “This meeting is about me. I should be allowed to be there. I have to be there for my 8th grade IEP meeting anyway, so what is the difference.” Then I started to questions my spontaneous answer.
So why did I  react so strongly to him asking to be there? I don’t honestly know. I guess it is one of my last ditch efforts to protect him. Yes, he knows he has Asperger’s, but he has never sat in a room with a group of people telling him what he is doing differently from everyone else. I am so afraid that what might seem like a heavy dose of criticism would scar him for life. On the other hand, maybe it would be a good thing for him to feel like he is taking control of his own education. Maybe it would be a way of him taking responsibility for his own actions. Maybe I just need to let go and let him grow up a little.

These meetings have always been so hard for my husband and I. We both always leave feeling deflated. No matter how much we both understand the struggles that he faces, it just doesn’t seem to ever get easier to have it thrown at us all at once. It seems so hard to make decisions for him when his struggles change from day to day, and they vary from class to class. I just don’t want him to feel overwhelmed and defeated like we have so many times.
 I know I have to prepare him for this big world that faces him, but I just don’t know the right way to do it. I wish I could Google, “How to raise a child with Asperger’s syndrome without screwing up.” For that matter, I would pay a hefty penny for the App that tells me how to make the right decisions for my children because this parenting gig doesn’t seem to be getting any easier.
I guess the next few days will be filled with quiet contemplation. Then, we will do what every parent truly does with these kind of decisions, we will jump of the cliff with a hope and a prayer that we made the right decision.

 

 

 

 

 

Tuesday, April 29, 2014

It won't be easy, but it will be worth it



 
 
 
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.

Blessed




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

The insanity of standardized tests



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


 


“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

Finding his way




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!

Tuesday, February 25, 2014

Vulnerability


 
For me, being the mom of a son with Asperger’s has resulted in many emotions over the years. Around every corner there has been a new feeling. In the early years, soon after the diagnosis, my emotions were sadness, hopelessness, panic and lots of confusion. Then, my “mommy bear” side kicked in and I had hope, determination and amazing resilience. Sure, from week to week, these emotions have shifted. There have been so many moments of pride, joy, amazing love, exhaustion, despair and courage. On some days, these emotions have changed from hour to hour.
The teenage years have created an emotion I did not expect…vulnerability. I feel vulnerable around every turn. I wait for the insults that so easily fly out of his mouth. Yesterday, I was wearing new sunglasses and he looks at me and said, “You know those look ridiculous on you, right?” I am pretty aware at this point that I am not going to take fashion advice from my teen, but my feelings were still hurt.

During his therapy session yesterday, he made sure to remind me (and the therapist) of how clumsy I am. Of course, it is completely true, clumsy is my middle name. The real point is that it had nothing to do with anything she was asking him, so I realize that is his way of avoidance, but my feelings were still hurt.
After eating a meal I cooked for him the other night, he informed me that it was “average”! He ate every last bite and asked for seconds, so it wasn’t “too average”, but it still hurt my feelings!

He lies to me daily. I want to trust him so much it hurts! I want to know that he will make the right choices. I want to know that when he looks me in the eyes, he is telling me the truth. I try to make every day a new day and do my best to trust him, but it is hard. He lies about everything from doing his homework, to brushing his teeth or taking a shower, to events that happened (or didn’t happen) at school. Every time he lies, it hurts and leaves me, well….vulnerable.

He does it to the entire family. We have all been hurt from time to time. My hubby is not around it as much. He gets hurt, but he just doesn’t feel it as deeply. He is able to let things roll off his back and move on.

 My youngest son gets hurt so often because he has to balance the inability to believe and trust in his older brother (who is supposed to be there for him). It has really affected him deeply. It worries me and breaks my heart.

I love Hunter with every inch of my heart. I want the best for him in every way. I try every day to do the very best job I can at being his mom.  I feel that even when I am at the top of my game, it is not good enough for him. I  know that because he is the closest to me, I am an easy target, but it still hurts. It still makes me question myself and my ability as his mother.

I sometimes try to imagine into the future. How will I feel when he is 20, 30, 40? What new emotions will there be? I don’t know what the future holds, but I know that the only way to deal with the crazy emotions is to ride them out. There is something about raw emotions that makes the human spirit grow. I’ve learned who I am and what I am capable of doing! I have learned a thing or two about not judging others until you have walked in their shoes.  I have learned that there is no greater love than the love you have for your child, and you will go to the ends of the earth to protect them. No matter what life throws my way, I will keep on loving him through every twist, turn, and emotional bump in the road.

Monday, February 17, 2014

Fight the good fight


Here’s the truth about being an Autism Mom (or Dad)…some days we want to throw in the towel. Some days are just too hard. Sometimes the struggles are just too much to bear, but then something happens. Some magical yearning from deep within our belly pulls us out of bed, or off the sofa, or out of the slump we are dwelling within.  We get up and start all over again. No, it is not easy. Some days it would be so much easier to give up and throw the covers over our heads, but those sweet little faces look at us with a longing for love and acceptance. Those teenage eyes beg us for love, help and understanding for what they can’t understand themselves. We pull up our boot straps and we do it all for another day. We live to tell about it (but most of us don’t say a word). We don’t tell you about the tears that stream down our cheeks in the shower; or the nights we have cried ourselves to sleep; or the thousands of panic attacks we have had over making the right choices for our kids. What school should he go to? Should I homeschool? Should I let him play sports or will he be mistreated?  Are those friends REALLY being nice to him? Should I put him on the medications? Who can I trust? These, and many more things, are our daily struggles, but we choose to fight the good fight for our children!

Tuesday, January 14, 2014

Lessons from the day

On our way to Hunter's school yesterday morning, Hunter looked over at me, with sincerity and seriousness in his eyes, and said, "Mom, I am really nervous about today. Today is the new semester and I have new classes, and teachers, and new kids in the classes. You know I don't do well with change! What if I don't know anybody in any of my classes? What if they are hard?" My heart started breaking.


With our crazy Christmas break (more to come later) and trying to get back into the swing of things, it just hadn't registered yet. I usually gear up for these transitions. I usually try to prepare him. I usually try to prepare myself, but it had totally escaped me. The mommy guilt kicked in. All I knew to say was, "Sweetie, it will be fine. Things are always worse than they seem." All I could think was, "What a stupid, cliché answer!!!" Honestly, I just didn't know what to say. The truth is, just like all of us, he had to face his fears. For him, though, this is so much to take in. New faces, new subjects, new classrooms...change, change, change...for a person with autism, this is sensory overload. What could ever be the right answer for him?


I picked him up from school at the end of the day, and he told me they had had an assembly at school on bullying. He thought it was interesting. He looked at me and said, "You would have cried today. This dad was talking about his son committing suicide after he was bullied. It was so sad." I asked, "Did you cry?" I waited for a second, assuming the response was going to be a resounding "heck no I did not cry", but instead he looked down and said, "Yeah, I cried. It was hard to see the dad cry. You know, he was out of town when it happened, so he feels really bad!" Uggg...right to the heart. As a parent, those words are hard to hear. Spoken from your child, it just hits home even more. More than anything though, I was touched by his answers. I was astounded at the thought he had put into this poor father's speech.


When I asked him how the new classes were, he told me how many kids he knew in his classes. He told me about the new projects in his computer classes he was excited about. He was smiling and laughing as he talked about it. I guess my answer was right after all. "Things are always worse than they seem!!"


I try to learn a lesson from every day I am on earth. Yep, every day I look at my life and think, "What did life teach me today?"


The answers from yesterday:


Lesson # 1: No matter how old he gets, he still needs his mom. He might act like he doesn't, but he does!! He needs me to reassure him that everything will be ok, no matter how cliché my answer may be. He needs to know that no matter what life throws at him, no matter how hard the transition, I'm here. Tomorrow, he will be too big to need his Mom. That is what he will want me to believe, but I will resort back to Lesson #1


Lesson #2: My son with Aspergers syndrome has empathy. He has amazing, heartfelt empathy!!!! I was pretty sure he did, but the teenage years have put serious doubt into this theory. (I'm sure all of you parents with teenagers have empathy for me!!)


Lesson #3: I already knew this one, but I learned again today...this parenting gig his hard!! There are no right answers. There is just doing the best you can and hoping that your best is good enough.