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.