Life is not a sprint, it's a marathon

Here I sit in bed. It's 12:30 a.m. Hunter starts school tomorrow. Not just any school, high school...the final 4 years before real life begins. He is still awake too. I have gone into his room off and on for the past 2 hours since he went to bed to check on him. He is tossing and turning. I know he is nervous, and I feel helpless because I can't take away those first-day-of- school-jitters.

The entire summer, I have been in a state of denial that this whole high school thing was actually happening. Then, a few weeks ago, I started having this familiar, uneasy feeling. It was a gut wrenching, sick at my stomach feeling. Yesterday, I realized that the last time I had this same feeling was when Hunter started Kindergarten. It really woke me up to what was about to happen.

Just like the beginning of Kindergarten, I know we are starting a new journey full of beginnings and unexpected turns. I know Hunter doesn't always navigate those new experiences well. Many things are similar to the beginning of Kindergarten, but unlike 10 years ago, I know this is it. I won't be taking his nervous little hand and walking him into his classroom. Instead, he will be nervously walking himself into this new experience. I'm getting closer and closer to the end of my journey as his helper. Sure, I'll always be there for him, but in 3 years, he will be 18. In 4 years, he could potentially be going to college. What then?

I'm at the stage of this mothering journey where things are getting very real. Our path to get here has been very tough at times. It has been filled with therapies and IEP meetings; calls, notes, and emails to and from teachers; and hours upon hours of strenuous homework battles. The stress at times has seemed like more than I could bear. Now, I look into the future with more and more concern. These 4 years will determine his future. Will he go to a 4-year college, 2-year college or trade school? Will he ever be able to live on his own? The uncertainty is very scary.

Four years will come in the blink of an eye. I have a feeling it's going to be a bumpy ride, but we will ride it out together. In the end, I hope that whatever the next 4 years bring, they will end with Hunter being well rounded, happy, and excited for his amazing future. I have to keep reminding myself that at the beginning of Kindergarten, I was completely uncertain about what the future would bring, but look at him now!!  There is a lot more work to be done to get him where he needs to be, but look how far he's come. After all, life is not a sprint, it's a marathon, and right now all I can do is take this race one step at a time.

He is my teacher by guest blogger Jessica at My Extraordinary Child

At Sassy Aspie Mom, I'm about keeping things real. That's why I  love to share other bloggers who tell their stories in such an open and honest way. Today,  I am thrilled to have Jessica, from My Extraordinary child, as my guest blogger. You will truly enjoy reading her story below and make sure to visit her website http://www.myextraordinarychild.com/.



He is My Teacher

Yesterday was the kind of day that had brought so much emotion.  Maybe it had more so been the series of events leading up to it, but either way that is where I had arrived.  It was time for our night time routine and my son had earned a sleepover with me since he had enough stickers.  Now don't judge I am desperately trying out new things to encourage positive behaviors.  This is our new method.  Negative reinforcement just gets lost, there have been way too many treats given out, and this is what I have left.  Anyway, after spending over an hour trying to convince him to clean up all the money from Monopoly that covered my kitchen floor, it was most definitely time for bed.  

Every night I do our usual prayer and sayings and last night was so different.  I try to mix them up for a reason, but just trust me that this doesn't ever go unnoticed when I do so.  After we went through it all I decided to just lay with him until he fell asleep.  It's not that I don't or haven't had concern that my son has been diagnosed with ASD, it's that some days it just hits all over again.  As we lay there we talked about sounds of the house and why he couldn't sleep.  He mentioned sounds I hadn't even noticed.  As he communicates more it all becomes so much more clear to me.  I watched him as he went through all his stims.  First he made shapes with his fingers, put his fingers over his eyes, and made specific movements with his mouth. He did it all on repeat yet looked over and smiled at me in between.  He even said "I love you in Polish."  I was trying to teach him how to say I love you in polish earlier on yesterday, but he took it quite literally and now that is exactly what he says, "I love you in Polish."  My heart melted and in that moment I just felt tears streaming down my face slowly.  I just stayed there watching him try to sleep and was thinking about all he goes through each day, let alone all he battles just to fall asleep.  

At one point he looked back over at me, and as it became clear that he had no reaction to my tears, I cried even harder. There are days I worry for him and for those he will encounter along the way.  I know that he is simply an amazingly beautiful and brilliant child.  My worry at times is how the world will effect him?  Then I think about what he tells me. He tells me that he is teaching his therapists how to play with toys.  He probably does see it that way and wonder at times what is wrong with the rest of us?  Why are we doing such strange things?  Why do we not notice what he does?  Why don't we see what he does?  It makes me laugh when I think about it.  While I spend my days trying to teach him about the world, he has taught me far more in just three years than I could ever teach him.

I am so grateful to get the opportunity to raise such an incredible child.  If I had half his strength, point of view, or listening skills I would be far better person than I am today.  In moments like that, it's when it all clicks again.  He is my teacher.  While I may be helping him in some ways, what he has taught me is far more than I could ever teach him.  Times like this always repeat and they are needed. The truth is that today I am humbled and I will be one day again.  How did I ever get this lucky?  Sometimes it's clear that I don't need to ask how the world is going to affect him, I need to ask how he is going to effect the world.

Of course this blog called for one of my favorites.  A little JJ Heller.

She never gives up

Imitation: the assumption of behavior observed in other individuals.

 Examples: Children learn by imitation of adults.

 

Charles Caleb Colton said, "Imitation is the Sincerest Form of Flattery." Nothing can be more true than when the imitation comes from your child.

At school, for Mother's Day, Grant (my NT, 9 year-old son) was asked to write some things in a card to describe his Mom. He wrote many sweet things in this card about me cheering for him at baseball games, volunteering for the PTA, writing a blog, but the one thing he said that touched my heart was, "She never gives up." I actually cried as I read this handmade treasure.

Later, when it was just he and I together, I asked him what made him say that about me. He said, "Because when something is hard in life, you work and work until you figure out how to get it done right, and when things get hard with Hunter (my 14 year-old son with Asperger's), you keep going. You never give up on him."

This little boy never ceases to amaze me. I feel like he has endured so much, yet he is so happy. Living with an older brother on the spectrum is not always a cake walk, especially when Hunter is in his not-so-fun teenage years, and you are his younger brother i.e. punching bag. There are days Grant struggles with it, but most days, he takes it in stride. He has dealt with his dyslexia like a champ and moving from Indiana to Texas like he had done it a million times. Day in and day out, he has such a zest for life. He has a contagious belly laugh and an amazing intuitive gift for being able to make everyone around him feel better. I could learn so much from imitating him.

Grant was diagnosed with dyslexia in first grade. Last year, in second grade, he was struggling. He was a year into his diagnosis and frustrated. He was down on himself. He felt dumb. It saddened me to see him so broken. I would read to him everyday, and have him read to me. It wasn't always fun. He fought me tooth and nail most days. At the beginning of this school year, something changed. He wanted to read. He was actually getting in trouble at school for reading during class. His teachers were amazingly encouraging. His confidence peaked. The boy turned into an avid reader. By the end of this school year (3rd grade), he was reading at a fifth grade level... and once again I cried.

In June, we always go home for the "Sommerfest" in my home town in Indiana. On the Saturday morning of the 3-day event, there is a 5K walk/run. Our family always participates. In the past, Grant was just too small to walk that far, so he would do the much smaller run for the younger children. This was his last year to do that run, but when I went to sign him up, he said, "I want to do the walk with you guys this year." I warned him that he would need to get conditioned in order to walk that far since he's not used to doing it. He assured me he would, so we decided to start walking on Monday morning.

Sure enough, on Monday morning (the first day of summer break, no less), before I'd had my first cup of coffee, I was met with Grant in his running shoes. He had his sunglasses on and a water bottle in his hand. We started out slowly, with a mile. Then a mile and a half. We walked every morning until we left for our trip. On the morning of the walk, he was up and ready to go. He walked that 5K like a champ, and when he was all done, he looked at me and said, "I didn't give up."

Sometimes I wonder if I am making an impact on my kids lives. I worry that I am not doing enough to guide them in the right direction. I often wonder if I am equipping them with the right tools to maneuver this difficult world. After all, parenting doesn't come with a manual. Then, Grant finishes that walk, learns to read, and reaches his goals because he "didn't give up". I know I'm making a lot of mistakes along this journey, but I actually got this one right!

 

He did it!

He did it!!! He passed 8^th grade!!! As I waited for the ceremony to begin, I couldn’t help reflect on the difficulties we had been through in the past 9 months. As I mentioned in my previous post, this school year has been very difficult. We switched Hunter to a new school because the public school he was attending just wasn’t working. The kids were not loving and excepting of one another. He felt like he didn’t fit in with the other kids. He felt different. We knew we needed to make a change, so we did. The school we chose was much more academically challenging for him, which wasn’t great, but the kids at his knew school were amazing. When we toured the school, we noticed the commodorey between the students and teachers. The atmosphere of the school was refreshing.

The students at the new school loved Hunter from Day 1. He felt excepted. He knew he could be himself. As his Mom, it was amazing to watch him grow and not feel stifled by the typical middle school status quo. Throughout the year, he would yell at me for “doing this to him, " when the work was hard. I took it with a grain of salt because I saw an amazing change in him. Yes, the homework was difficult. He wasn’t able to keep up with every expectation the school had of him. It was frustrating at times. Through it all though, he was learning a much more important lesson. He was learning to love himself.

Tears welled in my eyes as they called his name. I watched him strut across that stage with a new found confidence to receive his diploma. The students cheered loudly, chanting his name. These students didn’t see my Hunter as a kid with Asperger’s. No, there was no label put next to his name.  Instead, they saw my Hunter as cool, quirky, funny, tall, and I’m guessing some of the girls found him pretty darned cute (I would totally be embarrassing him right now). Yes, the teacher, parents, and grandparents in that room had taught the young men and women many things, but at this moment , the students were teaching all of us so much more.

 

Sometimes you have to throw up the white flag and say “enough”!

The past few months have been really difficult around our house. Hunter has been shutting down, slowly but surely.  Things became much worse when we returned home from my Grandmother’s funeral in March. I don’t know if it was her death; the fact that it was around spring break; the extra week off because of our trip for the funeral; the break in his routine; or that  state standardized tests were the week we came back. I really don’t have any answers. I only know that he had given up.

He began eating sweetener and sugar by the truckload, which is his typical sign of distress. He began scavenging for any and every kind of food he could find in the house, whenever we weren’t looking. Then, he kicked out the windshield to my car. He kicked out the windshield because I asked him if he ate my M&M’s I had hidden in the cabinet (don’t judge, sometimes a girl needs chocolate to survive). That’s all I asked. That’s what caused him to take his size 14 shoe and kick it through the windshield of my car.

Does he have rage issues? No, not normally. He talks back quite often. He will push his brother sometimes. He might tear up a piece of paper if he gets mad or throw something, but cause destruction to this magnitude, this was a first. What caused this sudden burst of anger?  I don’t have any explanations, other than he was just at his breaking point.

I didn’t know what to do. I had fear. He is 6’ 5” tall and weighs what I do. Could he hurt me? Absolutely yes, he could seriously hurt me. Would he? I truly believed he wouldn’t, but I wasn’t going to take the chance.

I immediately spoke with his resource teacher, explained what was going on in our home, and basically told her I didn’t have anything left, and I wasn’t willing to take the chance of him hurting me or his brother in another fit of rage. I immediately gave up the nightly struggle of homework and trying to decipher if he was telling me the truth about his workload. I began asking him if he had homework and then taking him at his word, even though I knew he was being dishonest most of the time. I surrendered.

I let the feelings of inadequacy go. I had to for me, for him, and for our family. The nightly struggle wasn’t worth it anymore. He needed the break and so did I, so we took it. Meanwhile, I hoped and prayed that he would pass 8^th grade. I went through 8^th grade myself and now I felt like I was trying to pass for a second time. I didn’t have a third time in me. Guess what…he passed! WE did it!

I believe life is constantly teaching us something if we will just stop long enough to learn from it. What did I learn from this? I learned that there are times when it is okay to stop fighting. Sometimes you have to throw up the white flag and say “enough”! This time it was essential for my sanity and safety. It was also good for him. I tend to hold his hand and lead him through life, but sometimes it stifles him. I needed to step back in order for him to grow.

 I thought long and hard about sharing this story with all of you, but the truth is, this is our life. It is the never ending feeling of confusion, the constant feeling that the floor might drop out from under your feet at any given moment. Never knowing what is around the corner is mentally exhausting. Not having any answers or any true way to help your child cope with these emotions he has trapped inside is frustrating beyond belief. It is hard to know when to hold his feet to the fire and when to let things go; when to teach, and when to let him learn on his own. This time, I surrendered and the world did not  come to an end. Instead, I could breath again, and so could he. Another life lesson learned.

Be my guest...Jessica Nieminski from MY EXTRAORDINARY CHILD

Today I am thrilled to have Jessica Nieminski from MY EXTRAORDINARY CHILD as my Guest Blogger on Sassy Aspie Mom. Her story is sweet and inspiring. Make sure to visit her at http://www.myextraordinarychild.com/blog.

Superhero: a fictional hero having extraordinary or superhuman powers; an exceptionally skillful or successful person - Merriam-Webster Dictionary

When the time came for me to have children, there were a lot of options and situations that I knew I needed to be prepared for.  Though I have to admit, majority of my thoughts were about choosing nursery bedding and baby names.  Would I use cloth diapers or regular?  What stroller and diaper bag should I get?   While many things came to mind, it had never occurred to me that I needed to prepare myself to raise a real life superhero.  

When I see my son, I don't just see a child with Autism that needs help to be part of the world.  I see a superhero who can teach me and others far more about the world than I could ever teach him.  I see the most amazing, dedicated, triumphant child who has a unique skill set unlike any other.  I see a boy with the truest, honest, kindest heart that I've ever seen.  I see a boy with great passion for life and extraordinary interests.  He is a person with a special connection to extraordinary individuals and a trusting heart that doesn't judge.  I see so many magnificent qualities in him, but the reality is that it is not all cake and rainbows.  

The hardest part about raising a superhero is watching the battles that they encounter daily.  Watching them not only battle the outside forces in their environment, but the battle within their own body.  There is no way to truly document how that feels as a mother because it is indescribable.  However, watching your child discover the world in a way that most people could never imagine is the indescribable counterbalance to it all.  

Everyone has their own philosophy on how to raise a child on the spectrum and I respect that.  For me, the question often isn't about how to raise a child with autism.  It is how can I help foster his inner superhero?  How can I help him  build upon the wonderful foundation that he already has, and how can I help further develop the person that he is?  It is hard as an autism parent; mostly because there is a fine line between trying to help faciliate the kind of growth that will better prepare him for this world and how and when to let him soar and just be him.  I think many parents of children on the spectrum struggle trying to find exactly where that line is in a life full of therapists and interventions.  

You spend every day trying to live in what feels like the same world as your child.  You spend countless hours lovingly trying to bring him/her into your world and stay there.  A world that brings them extreme discomfort and pain.  In order to even make my first real connection with my son, I had to enter his world and I think that should really count for something.  I may be uncomfortable with his world because just like my world is to him, it brings me extreme discomfort.  With that said, he loves his world and I feel that has to count for a lot when deciding where that fine line is.  To be honest, I don't think that we really live in different worlds, we just see and feel things differently.

As a parent of a child with autism you need to go outside of your comfort zone and think more about when to step in and when to help foster the inner superhero inside of them.  You see, according to the dictionary a superhero is a fictional hero, but I don't agree. When I see my son, see what he can do, and see how he perceives and combats the world on a daily basis, it is clear to me that superheroes are indeed very real.  There is nothing fictitious about them, and I couldn't be prouder to be raising one.  

Today's blog is dedicated to all the real life superheroes and extraordinary children out there.  May we all feel the blessings of your presence and the amazing qualities that you possess and bring to our world.  Thank you for all that you do!
                                            

 

 

Jessica Nieminski
http://www.myextraordinarychild.com/blog

A loving mother who won't stop until this world presents more love and opportunity for all children.

Maybe my opinion does matter...at least a little

Several months ago, during a car ride home from school, Hunter informed me that my opinion didn't matter to him. This shouldn't come as a shock to me. He pretty much says that through his actions each and every day. After all, he is a teenager who also has Asperger's Syndrome. He tells me what he is thinking, no matter what! Those words shouldn't have surprised me, but they did. I should no longer be hurt by his stinging words, but I was. I held it together while we were in the car. When we got home, I went into my bathroom and cried. It felt like he had physically punched me in the gut.

I know I have many years left of him thinking I'm pretty darned stupid. I know that as long as I'm telling him what to do and not do, I will be labeled the "Worst Parent on the Face of the Earth" by him. He tells me that constantly. This was different. When he said my opinion didn't matter to him, I heard that I didn't matter to him. I heard that nothing I have taught him had stuck. I heard that I wasn't important to him. I can handle him being pissed off at me for being his parent. However, I couldn't imagine not meaning anything in the fabric of his life.

Then, a few weeks ago, he had his first real school dance. He had been to another dance, but it was a fun dance for groups of friends. This was different. Many of his friends had invited girls to this dance. He had not invited anyone as his "date", but I could tell he was feeling extra pressure to fit in and be one of the guys.

The theme of the dance was "Hollywood". The students were supposed to dress like they were on a red carpet. I asked Hunter what he was going to wear, and he said sweats. Well, that wasn't going to work. I told him we were going to have to do some shopping. He didn't argue. My boy, who hates to shop with every square inch of his very tall body, did not argue! He said, "Okay, when are we going?" My car was already headed to the mall.

When we got to the store, he told me he wanted to wear a bow tie  and jeans. I actually thought he would look very handsome and Hollywood-ish in that, so he picked out a bow tie and together we picked a shirt that would coordinate. He never once complained. He was actually excited.

That Friday night was his big "Hollywood Premiere". He got dressed in his bow tie, coordinating shirt, jeans, Sperry-like shoes and, of course, coordinating socks (Hunter's socks always have to coordinate...it's his thing). He asked me to fix his hair to look nice, so I did. He actually asked me to fix his hair..what??? He looked extremely handsome. Of course, I had to embarrass him with a million pictures. I wouldn't be fulfilling my role as "Worst Mother on the Face of the Earth." if I didn't. He just rolled his eyes at me. Then, as we were leaving the house to take him to the dance, something totally unexpected happened. He turned to me, looked me in the eyes, and said, "Thanks Mom for helping me with my new outfit and fixing my hair." I said, "You're welcome buddy." Then, I turned around as tears ran down my cheeks.

This role of parenting a teenager isn't easy. I know I'm making lots of mistakes as I go along. I know there are many days Hunter doesn't like me at all. This night also confirmed that he needs me at least in some small way. Even if he doesn't realize it, my opinion really does matter, at least a little. I do have an influence in his life. Somewhere deep down, he might even think I'm kind of cool...well, that might be a stretch!