Reflections on amazing moments...

When we began our journey as Aspergers parents, it was very isolating. It was somewhat of a grieving process. Many people might not agree with using the word "grieving", but for my husband and I, it was a true feeling. The hopes and aspirations for our child's life had changed. The visions we had while he was growing in my stomach suddenly changed. The new visions for his life were not bad, just different and unknown. The old visions just weren't realistic anymore. We had to give ourselves permission to feel all of this and not feel guilty. Then, we had to move on and turn the page to our new and unexpected venture.

There have many bumps along the way, but with the bumps have been many amazing moments of accomplishment. There have been many times when we've thought we couldn't go on anymore, but that wasn't a choice. Through the storms, we have become stronger. Somewhere in the midst of it all, through the struggles, he has had amazing breakthroughs and we have found hope.

In my little hiatus from writing, Hunter has gone through some amazing moments. In my next few blog posts, I will share them with you. If you are a parent just starting out on your journey, I hope to give you some encouragement. You are not alone. It does get better! Find joy in the little things and out of those will come more than you ever imagined.

I have to confess...

I have to confess…I took a nap today. Not any old 15 minute refresher nap, but a 3 hour, settle in for a long winters nap, nap! I’d like to say I feel guilty about it, but that would be a lie. It was wonderful!!!

Hunter went back to school on Monday, so Granster and I spent the day building Legos and going to a nice lunch together. It was great, quality time that I just don’t get to spend with him. Honestly, he is just easier to parent most days. It is hard to admit, but he often gets neglected in the attention department, not by choice, but by lack of time and energy.

Anyway, after 2 weeks of Christmas Break with the hubby and kiddos, I couldn’t wait to finally get them off to work and school. It finally happened. This morning, at 8:15, I poured a nice hot mug of coffee, sat on the sofa watching a little mindless television, and breathed a sigh of relief.

After the coffee excitement wore off, I headed straight for my nice comfy bed. I know it was a luxury. Trust me, it doesn’t happen often. I knew it meant I was neglecting 100’s of other things I needed to be doing, but I was completely okay with that fact.

As you may, or may not have noticed, I have been absent for a while. My life, since my last blog post in October, has been a little crazy. Life somehow got away from me. Other things have been a priority, so writing has been on the back burner. Here’s the problem, writing is my therapy. It is sometimes, my only way to reach out to others who are dealing with the same issues. By putting my writing on hold, I in turn, put myself on hold. I lost part of myself, my hopes, and my dreams, and that’s not okay.

I’m not a big fan of New Year’s Resolutions. They just come and go, and have never seemed to work for me. I am, however, a huge fan of setting life goals. I turn 40 this year (man that hurts to type), and I have a set a few new goals for myself. I believe they will make me a better person as I turn over this new decade of life.

1. I am going to take more time for me. I am not sure what that means exactly, maybe exercise (doubtful) or reading or sitting in my car listening to the. radio or the occasional nap. It may mean different things for different weeks, months, or years, but I am going to do it. I have to recharge my own battery every once in a while!! I have really learned that in the past few months.

2. My time is precious, so I’m going to make it more of a priority to accomplish my hopes and dreams. This means I’m going to have to block off time in my schedule (and maybe turn my phone off every once in a while.) There is no time like the present!

3. Say no!!! Yes, I am a total people pleaser. I can’t say "no" to anyone. However, in my older and wiser years, I’m going to say NO to many more things that don’t make life a little sweeter!

4. What people think of me doesn’t really matter. What truly matters is what I think of myself. I am only going to surround myself with those who lift me up and make me a better person. People who will be open, honest, and supportive. Those are truly the only opinions that matter anyway.

5. I’m going to start living in the moment. Life is a gift, but it doesn’t last forever, so I had better start living it!

I have been writing about many of the things that have happened in my life over the past few months. Unfortunately, I just haven’t had time to get them posted. However, with my new say “NO” motto and blocks of “me time”, I hope to be able to share these moments with all of you! I can’t wait to make 2015 an amazing year! Happy New Year to all of you!!

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.

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.

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.

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.

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!!!

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!