Halloween 2015-The spooky year of transition into teenagerism

 

 

 

Halloween 2013

Halloween 2014

For many kiddos on the spectrum, Halloween can be very difficult. It is complete sensory overload. The costumes, candles, not to mention the sugar and food dyes galore...it can be an autism parent's worst nightmare. Early on, Hunter struggled with the candles in Jack 'o lanterns. Battery operated candles were an amazing thing for us because they didn't give him the same anxiety. Costumes were also stressful for him because he didn't like anything over his face, and they were uncomfortable. We were able to work around this by picking costumes accordingly.

Through the years, Halloween has become a very important holiday for our family. It has been a great source of fun and togetherness. It has been a great way of escaping stress and concentrating on creating memories. From the time Hunter was very young, we started having family costumes. Then, when Grant was born we continued the tradition. Since both boys were old enough to contribute, we have decided as a family on our yearly theme.

We dress our house up in Halloween silliness. I love witches hats and boots, lots of lights and candles (battery operated of course), and some sparkly skulls thrown in for good measure. In the past few years, I have added in some hanging ghouls a flying ghost, and a dancing skeleton to make things a little less "cute", per the boys' request. Everything from the costumes (including the dog's), the decorations, and the pumpkin carving is a family affair.

As Halloween approached this year, things were a little different. We had our family costume (eggs, bacon, a cook, and a waitress). The decorations inside and out were hung and lit up like a Christmas Tree. The candy was purchased. Halloween cookies (you know...the slice and bake kind) were baked over and over throughout the entire month of October. Everything was the same, except one thing...my teenage son was growing up.

For the first time ever, he mentioned going to a haunted house with his friends. I inwardly cringed. We have never really been the family who was into the scary stuff  (remember sparkly skulls). Sure we had added a few mildly scary things to our Halloween collection, but they were still fun and cute. I couldn't imagine how he would manage the over abundance of sensory nightmares that would come along with a haunted house. The darkness, loud noises, scary people...it just wasn't his cup of tea. He still hides his eyes at scary commercials. He mentioned it to me several times, and each time I would go along with his plan. I wasn't going to be the mom who kept him from trying something new. I knew I had to let him grow up and find some things out for himself.

Finally, the weekend came when his friends were going to the haunted house. On the way home from school on Friday, he asked if his dad or  I could take him. I said, "Sure...ummm...but are you sure you want to go. I mean, I was never into the haunted house stuff myself, but if you want to go, we will get you there. By the way, you know Grandma and Grandpa are going to be in town, so we might be doing something with them.  If you want to go with your friends, that's totally fine. Just let me know, and I will arrange things accordingly." Then, I took a deep breath. I wanted him to make the decision for himself. I knew he felt the pressure to be one of the cool guys. Now he had an out. He also had the ability to go if he wanted to...no pressure...

Later that evening, he came to me and said, "I don't think I'm going to the haunted house on Sunday. It's $30 and I don't want to spend that much to go. Plus, I'd rather just hang out with the family." I quietly thought to myself...I would have paid the $30, and did you just say you wanted to hang out with the family? Hath hell frozen over. Instead, I said, "OK buddy. Whatever you want to do. Just let me know if you change your mind, and we will work something out. I never heard about it again.

My hubby and I decided to have some of Hunter's buddies over the night before Halloween. He was so excited. We had the house all decorated like normal. We put black lights in every corner of the house to spook it up. We ordered pizza and stuffed them full of sugary soft drinks and candy. They watched a couple of scary movies and screamed their full heads off. Hunter isn't a fan of scary movies, but he wasn't about to tell them that. He was so excited to have his buddies around him, in his home, with dad in the room (for a little added protection haha). 

That night, after everyone had had left, he walked into our room and said, "Thanks so much for doing that for me tonight. Everyone really had fun." He couldn't wipe the smile off of his face. He slept with his light on that night, but he was so very happy!

Halloween night, he wore the bacon costume. He wasn't as excited as normal to put it on and run out the door to trick or treat, but he wore it and thought he was pretty cool. Late that night, Grant, Hunter, and my hubby had a candy lottery... otherwise known as my husband's way of stealing the kid's candy. I just left that between the boys, as I sat back and drank my glass of wine. Cheers to a Halloween that was a little scarier than normal, for many reasons, but also pretty amazing!

 

Halloween 2105

 

Finding strength through the struggle

 

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I saw this quote several months ago, and it hit me. It touched something in my soul. I immediately wrote it down in my journal, and then wrote my own words underneath.

 

This whole mothering thing is a tough job. It's a constant battle of knowing what to do and when to do it. When to say a lot and when to say a little. There is continuous doubt about whether we are doing it right. The amazing thing is that no matter how scared or unsure we are in ourselves, or how many times we "mess up",  we find the inner strength to keep going.

 



Then, I sat my pen and journal down and didn't picked it up again for months. Why? Because I wasn't sure what to say. I normally have my stuff together. Not now. Right now, I feel slightly defeated. I know that's not the a positive thing to say. That's part of the reason I haven't written for a while. I started writing this blog almost three years ago because I wanted to be a light to all of those moms (and dads) who needed it. I didn't want to write the sad posts about how hard this whole "Autism Mommy" gig really is because who really wants to hear that?

 

Last week I was determined to write again, so I sat down, grabbed my pen,  and this is what I wrote:

 

Struggle is the word of the day. As I sat down this morning with my journal and a cup of coffee in hand, all I could think about was my recent struggles to get my thoughts from my head to paper. As I started writing my rambling thoughts, there seemed to be one resounding theme..."Everything is a struggle." I struggle with how to parent. My oldest son is a being incredibly difficult most days. My youngest son is acting out. My confidence as a Mom has plummeted. My thoughts are foggy. How am I going to be a "Sassy Aspie Mom" when all I have are "Debbie Downer" thoughts?

As my oldest son with Aspergers enters this new stage, I just hope I am able to give him what he needs. Sometimes that seems like an impossible task. I find myself wanting to pull back and allow him to become his own man. I struggle with allowing him to fail. I struggle with knowing what my role actually is at this time of his life. Some days he still needs me a lot. Other days, he doesn't want me around at all. He is struggling to find his way. I am struggling to find my new role in his life. His new responsibilities on his path to become an adult are starting to overwhelm him, and I am struggling to help him navigate it all.

 



After I wrote those thoughts, I closed my journal and put my pen down. I sat and drank my coffee and then went about my day. Writing is normally my therapy, but lately, I just haven't had it in me. I haven't had the ability to give advice or even tell a great uplifting story because motherhood has truly been a struggle.

This morning, I grabbed my journal because I needed to write again. I wanted to get my thoughts on paper. Before I started to write, I looked back at my last few entries and realized that I had already written what I needed to say. My story was written in those small journal entries when I didn't have anything left to give. It wasn't uplifting or funny. It was just the true story of this "Sassy Aspie Mom's" life. Right now things are damn hard. Parenting a child with Aspergers through the teenage years is definitely a struggle, and my story is no exception.

The truth is, birth is about making strong competent, capable mothers, but strength isn't given to us. Rather, it is earned through pain and tears and  and fear and doubt and love and compassion and excepting our mistakes and loving ourselves despite it all. It is because of those struggle, not in spite of them, that we finally begin to trust ourselves and gain that amazing inner strength that makes motherhood such a gift.

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!

I will be his co-pilot

Last week I began designing an 8^th grade recognition ad for Hunter’s school yearbook. I wanted to put a baby picture of him in it, so I began searching through tons of old photos. I found my favorite picture of this sweet boy at the age of 18 months with bright eyes and a glowing smile. Then, I saw the pictures of him at 3 and beyond, and the light in his eyes was gone. It was as if something had been stripped from him.  I tried hard to recall what our life was like back then, but I realized that my memories of Hunter as a toddler were few and far between.

From the time of Hunter’s diagnosis, I think my mind just went on auto-pilot. I was so overwhelmed with what I needed to do for my little boy, that there just wasn’t enough room for any clutter. Every day I would read more, speak with more ”experts”,  work for his rights at school, manage tantrums, and try desperately to hold it all together. I was scared and unsure of how to do the right things for my little boy. It just felt like a crazy balancing act, but we made it day by day and year by year.

Every year since Hunter’s diagnosis has been challenging in different ways, but his eighth grade year has by far been the toughest. There have been many days and weeks, when I just didn’t think I had it in me anymore. I felt like one more night of sitting through hours of homework might just kill me. The hormones mixed with his need for independence mixed with the overall challenges of Asperger’s have been more than overwhelming. Now that he is 6 weeks from graduating from 8^th  grade, it is difficult for me to put into words the amount of struggles, hard work, tears and love that have gone into making sure he made it to this point.  I am just so very grateful to have made it.

Unfortunately, I look forward with an immense amount of apprehension. I thought by now he would understand the importance of school, but he just doesn’t. He may never get it. High school is going to be a whole new ballgame. I fear we could be heading towards our biggest struggle yet.

As he is entering a new stage of his life, I feel my role as his mother is changing. I once again feel the need to desperately hold it all together. I want so much to take away his struggles, but I am realizing that I can no longer do it all. He is going to have to take on some of this responsibility. He is going to have to figure it out for himself.  Once again, I feel scared and unsure of how to do the right thing. Only this time, it is for my 6’5”, not so little boy.

As I look back at how far we have come and look forward to the unknown, I hold one thing close to my heart. When I sat in the doctor’s office and he gave me Hunter’s diagnosis, my heart raced out of my chest with worry and concern and fear for the unknown. Now here I am years later with so many unanswered questions and aware that he has many struggles ahead, but this time, I enter this new phase with a little extra knowledge. I know that it has all worked out so far and it will again. Things are not going to be easy. Hunter is going to have some growing pains in the next several years; however, he will have me as his co-pilot.

 

 

 

   

Sassy Aspie Mom turns 2!

Sassy Aspie Mom turned 2 last week. It is hard to believe that it has been two years since I sat down at my desk with my lap top in front of me and a cup of hot tea in hand. I had no idea what was going to end up on the screen. .

It had been a really stressful few months. We had moved; I knew very few people; and Hunter's hormones had reached an all-time high. Things were bad. My life was crazy! I didn't know how to handle his attitude. He didn't know how to deal with his emotions. Our family had come to a few crossroads, and I was at my breaking point. My husband sweetly said to me, "Why don't you start writing..." The rest is history.

As I sat at that desk, staring at the computer, I knew I needed to write for my sanity. I needed to get my feelings out; like therapy, an escape, a release of negative energy. What I didn't realize was that it would ignite a passion in me. It would get my creative juices flowing. It would give me something of my own.

Writing has truly been a blessing in my life, but the best gift has been the feedback from other parents. Many parents have thanked me for being so open and honest about our journey. Some have reached out because their child has been newly diagnosed or just to post positive comments. Other Autism Parent Bloggers have been welcoming and encouraging to me along the way. It has truly been an amazing experience!

When I began writing this blog, I wasn't aware of how wonderful my new adventure would be. I only knew how alone I felt. It never occurred to me that others were feeling the same way. Now I know. Now I get that the one common bond that unites Autism moms, dad, brothers and sisters, is that we often feel isolated. We want to be surrounded by others who truly get it. It is wonderful to be understood, supported and inspired by those who are living in the trenches every day!

I certainly don't have all the answers. Most days I don't have any answers at all! I'm just a mom doing the very best I can. Some days I succeed and other days I fail miserably. I don't know what's around the corner for "Sassy Aspie Mom," but I can't wait to find out. My hope is that it makes a few people feel a little less alone, and on days when things are tough, it gives hope.

 

She believed in me...

My Grandmother died the morning of Wednesday, March 11^th. The entire day was surreal.  I knew it was coming. It was no surprise, yet it was hard to believe she was gone. All that was left were years of memories.

Within the hour of her passing, I began making phone calls for her final arrangements. Hunter was on spring break and was still sleeping when I received the call about her death. When he heard me on the phone discussing flowers, he looked at me with a confused stare. I slowly took the phone from my ear and said, “I’m so sorry sweetie, Mama passed away this morning.” His response was, “Are you kidding me?” I gently said, “No.” He stared at me blankly, as if he didn’t know how to react. Then, he started asking me about our plans. He wanted to know days and times for our travels and what we would be doing when we got there.  He feels more in control when he know the timing of our plans for everything including dinner, ballgames, and weekend events, so I guess this was his way of gaining control of the situation. Then, he went on with his day, but stayed very quiet and introverted. 

I spent the rest of the day on the phone trying to get everything perfectly organized for her funeral, which was my way of taking control of the situation. It was the only way I could emotionally deal with it all.

My hubby left work early to pick up Grant from school. When Grant got home, I sat next to him on the sofa and told him Mama had passed away. He seemed unsure of himself, like he didn’t know if it was okay to cry or if he was supposed to cry or whether he needed to comfort me, so I told him it was okay to cry…he did, as I held him.

The rest of the day and next few day before we left for home were odd. We would all have moments of quiet sadness and moments of laughter. We were busy trying to get everything ready for the trip. Laundry, phone calls and last minute shopping were welcomed distractions from the harsh reality.

On the way home, I tried to write some words about my Grandmother. In my heart, I felt like I needed to write her eulogy. I needed to be the one to speak about this woman who was so special to me. My Grandmother and I had always been very close. I was her only grandchild and I looked up to her. People always told me I was the “apple of her eye”.  I was definitely a complete pain in her ass. We were both stubborn. The apple didn’t fall far from the tree. Our relationship was a unique blend of love, respect and a complete battle of wills.

My Grandmother loved me. I never had any doubts, but she would not hesitate to call me out. I could say anything to her. She made me demand more from myself because she demanded it from me.  She believed in me completely and always reminded me that I could be anything I wanted. She taught me the value of hard work and that respect is earned. 

The thing that has struck me most about my Grandmother’s passing is the realization of how much her belief in me shaped my life. I didn’t really realize how much it bolstered my self-confidence and helped me to dream big, until she was gone. Now, I know the importance of doing the same thing for my boys. I know the importance of making sure they know that I believe in them;  I believe they can do great things in life; I believe they can set this world on fire. Hopefully, they will believe it too!

My Grandmother is gone. Those words are unbelievably hard for me to type. However, the life lessons she taught me are here, and will live forever in my heart. They are the principles that guide me daily. They are gifts that will live on because I am teaching those same ideas to my boys, and hopefully they will pass them onto their children.  Losing her is hard, but it is because of everything she taught me that I’ll be okay in this life without her.

 

 

With overwhelming love and respect, I spoke these words at my Grandmother’s funeral on March 17^,th:

 

I have been struggling for the past few days to find the perfect words to say about my Grandmother. It is so hard to describe what a person means to you when they are so intricately woven into your being. How do you put those feelings into words?

My husband said, just say what you have always told me. Tell them about your relationship with her; that you were with her almost every weekend growing up; how she taught you to do your best, speak your mind and always be honest.

Suddenly, I knew what to say…This woman I called “Mama” was not the baking cookies, sewing quilts kind of Grandmother. No, those were not her things. She was the drinking coffee, playing cards kind of Grandmother. She was hard working and a little hard headed but I learned so much from her.

Before I could write, she taught me how to use a typewriter. When I was in high school, she bought me a Franklin planner and showed me the importance of staying organized. I still use my planner every day and would be lost without it. From her, I learned the importance of reading and that surrounding yourself with great girlfriends will get you through almost anything in life. Most importantly, she told me I could be anything I wanted to be, and I believed it, because she believed in me.

My Grandmother was a tough nut to crack. Life wasn’t always easy for her, but she had an amazing resilience. She never complained. Instead, she just kept trudging through life with amazing strength and courage, living without regrets or apologies.

The weekend before she passed away, I held her hand and promised her I would be fine. I told her if she was too tired, she could let go because she had given me the tools I needed to be okay in this life. Then, I brought her hand up to my lips and softly kissed it…as I took her hand away, I felt a gentle tug as she brought my hand to her lips and gently kissed me back.

To tell you about my Grandmother means reflecting upon myself, because underneath it all, I am my Grandmother’s granddaughter, and for that I will be forever thankful.

                             

 

 

 

 

 

Being thankful for the wonderful gift her life has been to this world.

The past few weeks have been tough. I got a call on Valentine’s Day that my Grandmother’s time was limited. It’s funny how drastic life’s ups and downs can be; how quickly things can change from one minute to another; how much one phone call or conversation can change your entire world.              

Being a parent is a tough job, and it is made even tougher by moments of sorrow. The idea of telling your kiddos something that will break their hearts seems unnatural. We spend our entire lives protecting them from pain, and during these times, there is no choice but to hurt them.

The day I found out about my grandmother, I sat both boys down and my heart raced as I explained, “Mama’s body is tired and she is telling us that she is done. Her life has been long and full…” They seemed to understand the best they could. I marveled at how differently they reacted.

 Hunter (my 14 year-old with Asperger's Syndrome) said, “Well, I’m not surprised, I have been expecting this for a long time.” He said it in a way that showed his sadness and pain, but he was very direct with his words. I assured him that feeling that way was perfectly fine because he had probably been preparing himself.

Grant (my NT 9 year-old) began to analyze what this would mean in his life (he is definitely my son)! He began to speak about how this would be the first death of someone he loved and how he would always remember it. He was very sad and confused about his emotions. I just held him, unsure what words could help in that moment.

When you are losing a loved one, your heart has to decide how to deal with the pain. You have to really contemplate what you can do to find peace. Living fourteen hours away from my Grandmother,  I had to do a lot of soul searching about whether I needed to make the trip to see her one last time. I finally made the decision that I would only feel right if I saw her again. It was going to cause lots of travel headaches and school conflicts, but I needed to get home. It was the only way to have peace in my heart.

I wanted to give the boys the option to see her one last time. I figured they were old enough to make that decision for themselves. I told them there was no right or wrong decision, but they had the option to go home and see her one last time.  I was so proud of both of them. They immediately told me how they felt.

Hunter immediately said, “I don’t want to see her again. I don’t want to remember her that way.” I totally understood how he felt. I had the same fear. I was so impressed with his ability to be in touch with his feelings and express his emotions.

Grant emphatically said, “I want to see her!!!” I knew he felt the same way I did. His heartstrings were being pulled. He needed the closure.

We began making the travel arrangements. Unfortunately, the weather did not cooperate. The snow just started falling and it seemed like it would never stop. We decided we had to put our travels off for a week.

By this time, my Grandmother was losing weight at a rapid pace and her eating had severely declined. I called and told her we were coming home to see her. She didn’t seem to understand much of what I was saying, but when I told her I was coming home, she weakly said, “when”. I knew in my heart that she was waiting on me. I called her several days that week to assure her that I would be home soon. Each time, she would ask how long until I would be home.

Finally, I made it home. I walked into her room. She lifted her head slightly to look at me, but no words were spoken. I sat down on the bed next to her. Tears streamed down my cheeks as I said my final goodbyes. I held her thin, fragile hand and tried my best to smile through the tears. I had no way of knowing for sure that she knew what I was saying. I just knew with every last bit of my soul that I had to get it all out, for me and for what was left of my Grandmother’s spirit.

I softly spoke to her, “I love you and I’m so sorry you have to go through this. You are an amazingly strong woman and I know this is not what you want. I just want you to know that I’ll be okay. I will be okay because you taught me how to be strong. I don’t want to lose you for selfish reasons, but I love you too much to see you like this. I just want you to know that if you are too tired, it’s okay."

I brought her hand up to my lips and softly kissed it…as I took her hand away from my mouth, I felt her gentle tug as she brought my hand to her mouth and gently kissed me back.

Losing her is hard, but I know she would expect me to hold it all together. I am trying to focus on the positive memories we have shared and focus on the wonderful gift her life has been to this world.

 

 

 

 

Bonding over sushi

These days it seems to be getting harder and harder to connect with Hunter. I feel like a drill sergeant constantly telling him to do his homework, pick up his clothes and drop the attitude. However, on this day, in between a dentist and orthodontist appointment, we found time to do a quick shopping trip to the “cool” store (where all the guys shop) and have a little sushi together. Sushi is our thing. He and his dad have football and action movies. We have our bonding time over sushi.

When we sat down at the table, he casually grabbed the menu and commented on which sushi rolls we had ordered the time before. It was so sweet to watch him take control of the situation. He remembered what we liked and didn’t like the last time we were there. He grabbed the paper and marked the rolls we wanted to order and handed it to the waitress. I am still getting used to this new confidence he has acquired. I love it!

As he sat across the table from me smiling and happily eating what he had ordered, I found joy and warmth in my heart. During our lunch, he actually talked to me. He didn’t roll his eyes or call me names under his breath. He smiled and talked to me about the kids at school, his recent basketball season, and yes... girls!!!  He actually seemed to enjoy his time with me. As our lunch was coming to an end, he even asked me if he could have the last few pieces of sushi, and sweetly asked the waitress for more lemonade, “please”. He used his table manners…score!

For me, this time with him is  not about a delicious lunch but about overcoming the other struggles we face daily. These teenage years are not easy. I am trying with everything I've go to give him every tool to succeed in life, but he fighting me with everything he's got. There are days where I see no hope for a close relationship with him. My battle for him to function as an independent and functional member of society is my focus, and he is not really on board with that idea.

On this day, however, we had a breakthrough moment. For this brief period of time, he saw me for me, not a drill sergeant or the mean person making him do his homework, but just me... his mom. Tomorrow will be different. We will be back to the daily grind, but today I will...

Amazing moment #3-Acceptance

From the time Hunter started showing signs of being on the spectrum, I hoped he would one day find acceptance amongst his peers. I knew that I could love him and shelter him to a point, but eventually, he would have to face the wrath of the preteen and teenage years. We all know those years can be tough, but they are much harder for kids on the spectrum. I hoped that he would find his niche.

His first 2 years of middle school were very lonely. No one invited him over to their house or to birthday parties. He felt very isolated. Then, kids starting calling him names and pretending to be nice just to do mean things to him. I watched his demeanor change drastically. It broke my heart.

As I mentioned in my last post, we decided to switch schools for Hunter in November. It was a hard decision, but the turning point for us was seeing the attitudes of the students at the new school. They were smiling and kind to each other.  They were loving and supportive. The atmosphere was different. It seemed like a good fit,  and we prayed we were right.

A week into the switch, one of the other moms at school told me that the kids loved Hunter. They were really excited to have him at the school and he already had tons of friends. He apparently fit right in!

Hunter made the basketball team. He is 6’3” tall and an 8^th grader, so the coaches and players were ecstatic. He has played on many recreational teams through the years, but he has never had the ability to make the school teams. Now, at this small school, he made the team. He was one of the guys. He was so excited.

Then the most amazing thing happened…we got a call asking if Hunter would like to go hang out at the mall with some of the boys (and girls) and go see a movie on Friday night. Of course, we let him go! He had an amazing time!! The kids loved him. They were nice to him.  His confidence soared. My heart sang!

We are now 2 months into the switch and not everything is perfect. His schoolwork is much tougher, and that is a nightly struggle. However, my son is happy. He has friends who truly care about him. They have now gone to the mall several times. He has had a friend spend the night. These boys look out for him. They accept his quirkiness. For now, he has found his niche and that is my amazing moment #3!

 

 

Amazing moment #2-Finding his Pleasantville

One day in early October, when I picked Hunter up from school, he got into the car and said, "I'm not going to be a good person anymore." I replied, "Excuse me"! He said, "It doesn't pay to be a good person anymore, so I'm not going to be one."

My mommy radar went off. We preach loving one another in our house. Something was going on. He had to be learning this from school. I knew things were not good. I knew he was struggling. It was hard for him to communicate to me exactly what was happening, but it was obvious kids were not being kind to him. I had to do something... and soon!

Several people I knew had recently switched their kids to charter schools in the area. I had heard really good things from all of them, so I decided to give it a try. I called the local charter school first thing the next morning. I knew there was a waiting list for most of the charter schools in this area, so I thought I would go ahead and get his name on the list. Amazingly, the registrar said, "We actually have 2 openings in 8th grade right now." What? Jackpot!! I asked to set up a meeting to speak with their resource teachers and principal. They got us in the next week.

I had spoken with Hunter about switching schools. I knew the change was going to be tough. He surprised me when he told me he wanted to go tour the school. The next week, my hubby, Hunter and I met with 2 resource teachers and the principal to find our more information. During the meeting, they were speaking to him and asking him questions. Immediately, he was laughing and smiling and communicating in a different way.  It was amazing to watch. He was totally in the zone.

They told us that the curriculum there could be grueling. They really step up the academics at this school. It scared me to death. Hunter struggles in that area, not due to intelligence, but just the lack of being able to get information from his mind to paper. He also struggles with organization. I wasn't sure if he would be able to handle it!

Then, they took us on a tour of the school. It was different from anything I had seen. The kids were walking around the hallways with smiles on their faces. Their was a confidence in these kids that was just different. The principal knew them all by name. They were high-fiving each other in the hallway.
As we walked into the classrooms, you could tell that the teachers were happy too! They were smiling and joking with the kids, but the kids were still learning. It was amazing!

As we left the building, my husband and I were joking that it was like we had been in a scene from Pleasantville.  I asked Hunter what he thought of the school, and he said he really like it. I called the next morning to set up a day for him to come sit in on some classes.

About a week later, I took him to the school to observe for a half day. When I picked him up, he was all smiles! He was happy and laughing and talking about all the kids and calling them by name. He was acting like a different kid!

Over the next week or so, I would bring up the idea of switching schools sporadically. He was becoming more and more anxious about the idea of changing schools and leaving the familiarity of his other school behind. He kept telling me he was 50/50 on whether or not he wanted to go through with it. He really liked the new school, but he didn't want to leave his friends (there were really only a couple of acquaintances) behind. I was really torn with what to do. I really didn't want to put undue stress on him. I began to observe his behavior. Every day, when I picked him up, I didn't see the same smile he had on his face when he came out of the charter school.  It took a few weeks from that initial meeting, but my mommy instincts told me we needed to make the switch.

My hubby and I discussed it, agreed, and sat him down to tell him. His anxiety hit top level. Wow oh wow was he not happy. He yelled and screamed and cried and said he wasn't going to go. I felt so bad for him. I knew that deep down in side he really wanted to give it a try, but the change was just overwhelming! I struggled between the stress this was causing him and knowing this was the right choice for him.

It took a few days to get the transfer paperwork done, but by the Monday of the next week, he was starting his new adventure! He hated me for it. The entire weekend before, I think he called me every name he could think of under his breath. He was so angry and scared. I was so excited for him and scared for him at the same time.

Even though my husband and I had both decided this was the best decision for him, in typical form, he was only angry with me. My husband decided that he would take him to school every day the first week. I agreed that it would be better. It took everything I had to not take him on his first day. I had walked him into his first day of school since pre-school, but I knew it was for the best.

I picked him up that first day of school and he came out all smiles. The second day it was the same. By the end of the week, he knew all the kids by name, and parents were telling me how much the kids loved Hunter!!  The following Monday, he was up and ready to go before he needed to be (first time ever)!!! His attitude was completely different! He was happy! Truly happy!

About three weeks later, on the way home from school one day, he said, "Mom, you know how at my old school I didn't really fit in. I would have to try really hard to be like the other kids?" I nodded.
"Well, at this school, I don't have to try. They just like me for who I am. I fit in without really trying. They like me for me." I smiled and nodded as the tears welled in my eyes!

Amazing moment #1-My son the football player

When Hunter was around three, we put him in t-ball. His coordination wasn't the best, but we hoped that he would enjoy the sport, and it would help him with his socialization. I just really wanted him to have fun. Instead, the frustration of not being able to hit the ball was just exhausting for him. It was just too much. We tried for a few seasons, but it just wasn't getting any better, so his baseball playing days came to an end.

When he was around 4, we decided to try soccer. Because the hand/eye coordination was not as essential, we hoped that maybe soccer would be fun for him. I can still picture the first soccer game. The other kiddos were kicking the ball and running toward the goal. Our little guy was stemming 10 feet away from everyone else. He was having fun. In in mind, he was playing, but he wasn't really participating in the game. We decided that maybe soccer wasn't his thing.

Luckily, he is a very tall boy, so basketball seemed to be a better fit. Once he got into elementary school, we signed him up. What he lacked in motor skills, he made up for in height. All he had to do was put his arms in the air for a block and nothing was getting by him.

I knew the chances of him making the school teams were unlikely, so I kept him engaged in recreational basketball. Unfortunately, last year was his last year because he aged out. I knew that we would have to start finding more social activities.

At the beginning of the school year, he got in the car one day after school and said, "I want to join the football team." What? You are 6'2" and 130 lbs!!! My momma bear instincts stepped up and I said, "There is no way you are setting foot onto that field!!"

When my hubby got home, his response was very similar to mine. For the next several days, his unwillingness to give up wore us down, little by little. Apparently, the students didn't have to try out for football. He knew he would make the team. He really wanted to fit in with the other kids.

Finally, we gave in, and $200 later worth of extra padding, an extra big mouth guard, and any other safety equipment I could throw in the cart, my boy was a football player. Every day when I picked him up from practice, I would breathe a sigh of relief when he hopped into the car with no arms or legs broken and no major cuts or bruises.

The day of his first football game arrived, and I am sure I was more nervous than him. Butterflies were having a dance party in my stomach. My husband had taken our youngest to a little league game, so I sat in the stands by myself. Flashbacks were running through my head of my little boy on the baseball fields and soccer fields. I just wanted him to have fun. I wanted him to feel cool and fit in with the other guys. I wanted him to not get hurt. Instead, he never played in the game.

He was so defeated. He was so angry and down on himself. It was awful to watch him suffer. This was no longer little league or 4 year-old soccer. This was a teenage boy who already didn't feel cool enough to fit in with the other kids and now, it was worse.

I would love to say that this only happened once, but it happened three more times. My momma claws didn't have to come out because pappa bear stepped in and made a call to the coach. If you are going to let all the boys on the team and have them practice every day, then you have to give them a little playing time (especially when you are winning every game by a landslide)!!

Needless to say, they started putting him in the game. It was only for a play here or there, but it didn't matter, he was playing football. Every time he would step onto the field, we would reach for our phones and cameras and capture each and every moment. I would hold my breath. I would pray he wouldn't get hurt. He didn't. Instead, he would walk off the field with a little more swagger. He would hold his head up just a little higher.

When the final game of the season came, and he took his final step onto the field, I leaned over to my husband and whispered in his ear, "Take this moment in. You may never see this again, so take it in..." Tears welled in his eyes.

After the game, Hunter strutted off the field. He was so proud of himself. He felt good. We have the pictures to prove that he played middle school football. Man, was I glad he didn't get hurt. All of it was surreal.

After the game, as we were walking to the car, Grant (his younger brother) walked up to him, patted him on the back and said, "You were amazing Hunter!"....and the tears rolled down my cheeks.

Yes, raising a child with Aspergers Syndrome can be tough. There are days that it can rip your heart right out of your chest, but there are other days that your heart soars! Those are the days you don't forget.