Tuesday, April 23, 2013

Finding rays of sunshine through the driving rain

I wrote this in my journal several weeks ago after dropping the kids off at school one morning:

Today while driving the kids to school the rain was pouring down. I was nervous because the roads were wet and I could barely see out of my windshield.  I could not wait to pull into the garage where it would be quiet and peaceful.  I could not wait for the rain to stop pounding against the metal of the car.  That is exactly how I feel about life right now.  I can't wait for the anxiety and worry to stop beating down on me and the peace to begin.  I crave that quiet.
It had been a tough morning. By the time I dropped Hunter off at school I felt like I had been to battle. I don't remember what the struggle was that morning, but once again, I felt defeated. That's the thing with raising a child on the spectrum. There are many days of that driving rain. There are many days when the rain just won't stop. It seems as if there is no hope for a brighter day. Those seemingly never ending days leave you feeling hopeless and scared, but then those occasional days with a ray of sunshine keep you going and holding on.

The rays of light come in many forms. They can be a breakthrough from your child; a shared bottle of wine with a friend; a surprise Facebook message from someone you miss; kind words from a stranger; words of encouragement or understanding from a friend or family member,there are so many small things that keep you going. Many times they seem too few and far between, but they are there. Sometimes, we just have to make our own rays of light by making plans for a girls night or a date night or planning a weekend getaway. Those things keep us going and make the noise from the pounding rain just a little quieter

The hardest part about raising a child with special needs is that you can't stop. This is one job you can't quit. You have no real options but to keep going and keep fighting. I think that is what makes the days so tough sometimes. It gets harder and harder to find that glimmer of hope through the driving rain.

Today, Hunter is in a good mood. We had an uneventful morning and the afternoon has been peaceful.  So for right now, in this minute of this day, I am going to grab onto the ray of sunshine and keep going.

Sunday, April 21, 2013

Feet in the sand and a margarita in my hand

These were my thoughts from my crazy day yesterday:

So today started like many other mornings. I woke up hopeful for the new day to start.  I was ready for my cup of coffee and to put my big girl panties on and kick some ass on this Saturday.  My hubby had the coffeepot ready and I was ready to go.

 Not long after, it began. The strife, the headache, the teeth hurting from clinching my jaw. Then came laundry; more fighting with Hunter;  cleaning the kitchen; more fighting with Hunter; trying to take a shower;  fighting with kids over video games; driving to a little league baseball game; fighting in the car between the kids. Now, my hubby and I are fighting over the fighting and well...I'm done. This mama needs some Calgon.

I try to keep my head up day after day, but sometimes it all just becomes too much.  I am trying to find little things to look forward to from day to day, but it is tough to keep my head up. Every day is the same. It has been for years, but since he turned twelve...yikes!!!  It is the same fighting over and over. I try to keep my voice low and calm because he keeps going and keeps fighting, but eventually I lose it!

He is constantly sneaking WII remote controls and IPods at night, so we now have a safe to keep them away from him. He is constantly sneaking food, so anything we need to keep away from him has to go in the safe.  We recently figured out he is watching inappropriate videos with his little brother about how to play a certain video game, so the parental controls are now on the IPods. His new fun is pitting my husband and I against each other to get what he wants, and it is all too fun when he calls me "bitch" under his breath or calls his little brother "stupid", "dumb", and every other condescending remark. It is now not only affecting me, but it is really hurting Grant's self-confidence, and a constant strain on my marriage.

It is even more fun when he gets in trouble and suddenly it is our fault. We are supposed to let him do whatever he want whenever he wants.  In what world should a child be able to do what he wants to when he want with no consequences....Hunter's world!

My husband keeps telling me we need to keep talking to him and eventually we will get through to him. I wish some of his optimism would wear off on me. I just don't know where to go from here. I'm just exhausted. I need a break! I need my feet in the sand and a margarita in my hand.

Thursday, April 18, 2013

Is it Aspergers or his age?

This is how my morning began...

Me: Hunter, you did not clean your room like I asked you to yesterday.

Hunter: I am tired of you pushing me around and telling me what to do!

Welcome to my daily struggle with my Aspergers kiddo. The struggle is not always over cleaning his room. It can be over the homework he constantly tries to avoid. It can be over any number of things I ask him to do or that are his responsibility. He is twelve, so the million dollar question is always, "Is it his age or the Aspergers?" To be honest, I don't know the answer, but I do know that it is exhausting!

I have been told that Aspergers is the "syndrome of laziness" by a school psychologist. At first I took real offense to this comment, but through the years, I have come to truly understand what this professional meant.

If you know one person with Aspergers, you only know one person with Aspergers. For my Aspergers son, life revolves around his wants and needs. He is very ego-centric. Anything that gets in the way of things he wants are out of the question in his opinion. We have trouble going out to eat, or going to the bank, or even to the movies or bowling if he has not had his video game time. The easy answer from everyone around us is to just take the electronic games away. It sounds sooo easy, right?

We have tried this and then the situation gets worse. He shuts down completely. He can't function. He suddenly can't clean himself in the shower. His already strong lack of desire to do homework becomes even worse. His dishonesty that is already constant becomes worse. Sneaking around becomes worse. Then, my husband and I just shake our heads. What now?

Our solution, for lack of any better ideas, has been to limit his game time to 1 1/2 hours a day on the weekend. He has to earn "computer time" through the week by being honest about his homework, keeping his grades up, and showing respect to his father and I. When "computer time" is over, we give him around 10 minutes warning to wrap it up. Once we tell him he must get off, we start deducting time from the next day. We have made these boundaries clear, and they seem to work better than many other ideas we have attempted.

The challenge with Hunter is that from day to day the challenges are a little different. His attitude can be completely different. His ability to reason things vary. Some days he actually seems somewhat willing to help in small ways. Other days, if I ask him to pick up his shoes, he tells me he hates me. The one constant is that feelings and emotions of others, especially those closest to him, don't really matter most days. This means many hurt feelings in our house. It means trying to reason the fact that, for him, it is not personal.

Is it Aspergers? Is it his age? My guess is that it is a mixture of both that creates an exhausted mom and dad; a sad little brother; and confused pre-teen boy that just wants us to all understand why he feels the way he feels.

After his words to me this morning, I took the time to talk to him in the car on the way to school (I do this often, as he is trapped and has to listen, he he). I told him I love him more than he will ever know. I told him he doesn't have to like me, but I need him to know I am always on his side and I will always be here to protect him. Then, I dropped him off at the door of the school, and he turned to me and said, "Well, hopefully SOMEBODY is in a better mood this afternoon!!" By the way, I wasn't! He was, though, and he did seem try to get along better this afternoon. Maybe he listened; maybe it was a coincidence; maybe he wanted something, but he was better this afternoon. For that, I am thankful and hopeful that my talk this morning touched a nerve, for a brief moment.

Wednesday, April 17, 2013

The time has arrived

Our appointment was at 4:00 yesterday afternoon. My husband, myself, Grant, and Hunter all walked into the psychologist's office. She said, "Hunter, do you know why you are here?" He said, "No..." Then, she looked at me and said, "Mom, why don't you start us off by telling him why we are here today. " My mind was churning and I was thinking, "Oh crap!!! What do I say now?" So I did what any loving wife should do, I said, "Jeff, you are better at this, why don't you start?" Yes, ladies and gentlemen, I threw my hubby under the bus in a big way!!!

Jeff did a wonderful job of starting the conversation. He said, "Hunter you have mentioned before that you feel weird sometimes." Hunter agreed. Then, the doctor began by explaining that when many people deal with similar characteristics, they are often given a name for the person who did the research. In this case, the characteristics are named for a man with the last name of Asperger.

Immediately, Grant and Hunter began laughing inappropriately! It did not take 5 seconds for the words "ass" and "burger" to come out of their mouths in a loud and embarassing way . Jeff and I just grinned and shook our heads.

The doctor went on to explain the many characteristics of Aspergers. She mentioned obsessions, trouble in social situations,etc ..... Then, she asked him if any of those seemed familiar to him. He kind of grinned and said a few odd remarks under his breath. I know he understood exactly what she was saying, but he was obviously very uncomfortable.

He then asked a very interesting question, "Will this affect my lifespan?" She said, "Do you mean will this kill you? No, this will not kill you. You will die with this because it is part of who you are, but it will not take your life." He seemed somewhat calmed by this fact.

She also explained to him that things like driving a car might happen later to him. I was relieved when she explained that Grant might do things at different ages. She said we might allow Grant to do things earlier and that did not show our love of Grant versus him. It only reflected our desire to keep him safe and respect where each of them were in their maturity level at the time.

We ended with asking him if he had any more questions. He seemed done and ready to get home. On the way out to the parking lot Jeff whishpered to me under his breath, "Were you surprised at how well he took it?" I replied, "No, he took it exactly how I thought he would. He already knew."

Last night he did not say a word about it. Life went on as usual. This morning we woke to a new day. Hunter is the same boy with the same worries and obsessions and difficulties. He is the same child that was diagnosed 7 years ago. Our tears flowed then. We dealt with it then. We mourned then. Now, he knows, and there is a clarity to the situation. There is a closure we all needed and life goes on as normal! (Well as normal as our life gets.)

Tuesday, April 16, 2013

Living in spite of the labels

Today is going to be an interesting day. Our family is meeting with Hunter's psychologist to tell Hunter he has Aspergers. We have never denied that Hunter is on the spectrum. We have always been honest with family and friends about it. We have always explained to Hunter that he has struggles that other people don't have. He struggles with fine motor skills and has since he was about three, so he has always been in occupational therapy. He has always struggled with his social skills, so he has been in behavioral therapies, both individual and group. We have always intended to tell him he has Aspergers, but it has just never been important to us to put a label on it.

I am sure that many people will disagree with our decision, but we have truly done it for his own good. This world will not modify for him. He will always have to adapt to survive in it! Therefore, I don't think the label is important. What is important is overcoming obstacles in life and living life to the best of your abilities.

I had an uncle who was severely handicapped. His wife was handicapped as well. The amazing thing about the both of them was that they did everything they could to exist in this world no matter what the circumstances. They were an inspiration to our entire family. They were an inspiration to our small community. Things were not always easy, and sometimes they had to ask for help, but they made it work. They started their own business. They lived on their own and functioned with a little help from their friends and family. We all loved them for who they were and never saw them for their struggles, but for their strengths. Many things in my life have taught me lessons throughout the years, but few things have taught me as much as the lives they lived.

Watching Hunter over the years, I have been concerned that if we told him the name of his syndrome he would say things like, " I can't clean my room because I have Aspegers." or "I can't do that homework because I have Aspergers." Instead we have explained to him that we all have struggles. Some people struggle with reading, others struggle with athletics, some have illness, but everyone has obstacles they have to overcome.

Recently, he has seemed very confused about everything. This age is just awful for every kid. So much change is going on with their bodies and hormones are raging. Bullying has really begun this year at school, and kids are starting to call him names. His therapists and schools have always agreed with our decision to not tell him, but now, it just seems like the right time.

Today, Hunter will walk out of the doctor's office with an entirely new outlook on his circumstance. It may come as a total shock to him. It may be a relief. No matter the outcome, we will assure him that nothing has really changed.


Monday, April 15, 2013

Unspeakable tragedy

My thoughts and prayers go out to everyone affected in Boston and around the country tonight. My heart aches for the parents of the 8 year-old boy who died today, and for those parents sitting by their children's hospital bed tonight dealing with unspeakable circumstances. I  pray for those Moms and Dads who won't be home tonight to tuck their children into bed because of some monster/monsters who committed such a horrific act.

I found out about the bombing today a few minutes before I left to pick up the boys from school. I suddenly felt numb and the events of  9/11 came rushing back to me. After we arrived home, the boys went outside to play, so I turned on the news. Hunter walked in and asked me what was going on, so I tried to explain it to him as simply as possible. I also tried to tell Grant, but struggled with how much to tell him. He is only 7!! It seems so unfair to have to tell my boys about something so senseless!!

A little later, Hunter came to me and said, "You know Mom, the person who did this must be a genius. I know he is evil, but he has to be really smart to plan something like this."

Grant said, "Why were the people running in the middle of the street towards the bomb?" I quickly realized he didn't know what a marathon was, so I explained that they were running towards the finish line, not the bomb.

I don't know what the kids were thinking as they laid their heads on their pillows tonight. I know I feel a deep sorrow in my heart. Sorrow for the immense pain our country is experiencing tonight and will experience for weeks and years to come. I grieve for our country that will no longer embrace my children with a of a feeling of safety and security.

Thursday, April 11, 2013

Life is messy

I am a perfectionist.  I have been that way since I was a very young child. My nature has always been to try my best at everything and never fail.  Failure has never been an option. Then, my autistic son came along and I discovered that "life is messy" and there is no such thing as true perfectionism.

Hunter is exhausting in ways I never thought possible.  He will beg for lasagna, but when I make it, it is too cheesy.  He will procrastinate homework but blame me when he has to spend his entire evening catching up.  He will lie to me or do something wrong but blame me for his punishment.  If he gets bad grades, it is the teacher's fault.  If he fails to get a basket in a game, it is the other team's fault.  The blame game is never ending.

When things are tough, people often say, "God never gives you more than you can handle." My canned response has always been, "Well, I think he has severely overestimated my capabilities."  I have criticized myself over and over at the failure I am as Hunter's mother.  Many days he makes me feel like I am an inadequate mother by his actions.  I have listened to others criticize our discipline of him, or try to give advice as to how to better parent him.  I have involuntarily put blame on myself and allowed others to put it on me.  I have worried about the judgment and criticism because I felt like it only shed light on my failure at motherhood.

Seven years into his diagnosis, I have come to the realization that maybe God didn't overestimate my capabilities at all.  Maybe he gave me Hunter as a learning tool. Maybe Hunter is my wake up call to just let some things go.  Things in life aren't going to be perfect. Not everyone is going to understand or agree with our parenting decisions.  I am not going to maneuver parenting a child on the spectrum (or off the spectrum) without failure.  I am going to lose it some days.  I am going to make colossal mistakes. I am going to get up the next day, brush off my boots, and give it another try!

The lessons of life tend to be learned by our failures. With each failure we climb a little higher on our ladder to understanding ourselves and each other.  I have a long way to go on that ladder, but now I look forward to the climb. It's always fun to see where it will take you!

Wednesday, April 10, 2013

Filling your happiness tank

Autism affects every family a little differently. Many families feel the financial strain from the many therapies, doctor appointments, and medications. Some feel the emotional stress brought on by the constant battles with the schools, doctors, and the children themselves.  Many siblings feel neglected by the amount of energy the parents give to the autistic child.

Our family has faced every one of these challenges.  Many days my husband and I feel totally exhausted and frustrated by the time we go to bed. Our discussions during our rare alone time are often filled with worry over the present circumstances of dealing with Hunter’s condition and the concerns for his future.

I was once told by a doctor that moms of children with autism actually have less serotonin in their bodies. That means that these kiddos actually strip away our happy hormones.  What does all of this mean? It means we have had to get creative and make happiness happen.  I have gone down the path of being depressed, but I have come back stronger! I have learned that I MUST put myself first or there is absolutely nothing left for everyone else!

For me, yoga has been a great stress relief. I find that when I am done, I feel a sense of peace. The exercise also helps me face the day with more energy. The problem is finding the time.

I love to set aside 15 minutes to just be alone in my thoughts. Many times I take this time to journal. I love to write, so I find that this helps to calm my nerves and focus my energy to more positive things.  Just taking the time out to breathe and refocus seems to help. Again, it is not always easy to find the time, but I make a concerted effort to do this as often as possible.

Finally, I have found that date nights with my husband really help keep us stay connected. The divorce rate amongst parents of children with autism is really high. It is so important to have that time for my hubby and I to just be “us” for a while. It also allows us to regroup and become a stronger unit to fight the daily struggles. We try to do this once a month, but don’t always make it.

On my journey I have found that these things really work for me. It is so important to find whatever makes you happy and use it to refill your happiness tank.  Simple things like manicures, massages, long walks, or reading can give you the break you need to recharge and come back stronger. The important thing for all moms is that we take care of ourselves. We have to have to stay healthy and happy so we can be there to fight for our children. 

Tuesday, April 9, 2013

Straightened out

This weekend marked another milestone in Hunter’s life. He now has braces. He has struggled with an overbite for several years, and it has been the source of a lot of harassing at school. Because of his sensory issues, I have delayed getting them. He chews on everything…pencils, school id, clothing, so I thought they would be a nightmare. Finally, we "bit the bullet" and did it!! He was so excited!!

While at the appointment, the receptionist and I were discussing how great it was that he would have them off before high school.  We were discussing how cruel children can be to one another. She made the comment that at least his teeth would be straight before he entered his freshman year. 

Suddenly, my mind rushed to everything else that would not be “straightened” by then, and a wave of panic came over me. His social issues will still be a challenge, school will still be a struggle, life will still be so uncertain. At that moment, my heart began to hurt. I wished with all my heart that the rest of his struggles could be fixed so easily. A few brackets and some adjustments seem so much easier than the pain and heartache my (not so little) boy will have to face to fit in with the rest of the world. 

While his teeth are shifting and changing over the next couple of years, I pray that Hunter does the same. There is no quick fix. There is no easy solution This constant and ever changing life will continue to throw obstacles for him to maneuver, but I hope he is able to grow and adapt right along with them. 

Friday, April 5, 2013

There are no roadmaps

I have been asked the question many times, “Will Hunter ever be able to live a ‘normal’ life?”  I have asked myself the same question, so I answer truthfully, “I don’t know.” All parents have concerns for our kids.  We all wonder if their lives will turn out as they wish.  We all want our children to be healthy and happy.  As a parent of a child on the spectrum, my worries are constant reminders of the long-term ramifications this disorder can have on his life.

I wonder daily if Hunter will ever drive a car, pass high school, get married or have children.  I wonder if he will ever be able to hold a long-term job.  I worry that he will never truly find happiness because his unrealistic expectations will never come true.  These worries are real and they are never ending.

I wake up every day and put on my “fix-it” hat. I take him to therapy.  I email constantly with his teachers.  I work through the grueling homework every single night.  I try to keep my calm and breathe through whatever obstacles each day will bring.  I do this every day with the hope that I am helping him, in some way, to reach his dreams and lead a “normal” life. 

The problem with every child is that there are no roadmaps; there are no GPS systems to tell you when you have taken the wrong road.  All you can do is try your best and hope and pray that you are on the right path. With a child on the spectrum, there are new roads popping up every day, and no GPS could keep up with the constant and every changing winding roads that are thrown your way.  

Will Hunter every lead a normal life?  I wish I had the perfect answer to that question. What I do know, is that I have hope and that will never be lost. I have days when I feel like this mountain is too steep, and I just can’t keep going, but truthfully, I know that is not an option.  I know that I have to keep working and praying. What I know is that someday, when I look back on this journey of raising him, I will know that I tried my very best.  Maybe my best will have been enough, I hope so!

Wednesday, April 3, 2013

A day at the park

Last week, my sweet Grant (who is 7, and non-Aspie) asked me to take him to the park. Hunter was at his tutoring session, and it was a beautiful spring day, so we grabbed a couple of drinks from Sonic and headed to the park. 

Earlier that day, I had received a call from the school counselor to inform me that she was concerned about him. During a class session, when she asked how full his cup was, he told her it was empty. She told me she holds these sessions with each class about once a month and each time he tells her the same thing. She also said he talks about his big brother all the time and worries about him. It broke my heart.

I call Grant my "cuddlebug". He is such a loving little boy and has such a big heart. I worry what the constant turmoil in his life will do to him long-term. I pray that it will make him strong and compassionate. I try to keep him active in sports and praise him for his straight A's and  hard work, but there is still this hole in his heart I can't seem to fill. He asks for so little, but has been given such a cross to bear. I worry about his little heart every single day. I want him to be happy and feel loved. Some days I just feel like my cup is too empty to give him all the love he deserves.

That day at the park, I watched my little boy play. I smiled and waved at him, so he knew I was there. For that few minutes, I knew he was happy. For that moment, my heart was truly full and I knew his was too! As Mom's, all we can do is take things moment by moment and do the best we can to show our kids we are there for them and love them. Those few moments were special, and I plan to try hard every day to create more of them.

Tuesday, April 2, 2013


Hunter and I were driving to school the other day when I saw this older gentleman in a sports car. The gentleman was sporting a shiny bald head. I mentioned that I really liked the car and Hunter said he like the “dudes” bald head. I said, “He must have waxed his head and car at the same time.” We both laughed. We laughed until we cried. It felt so good to laugh like that with him.

This seems like such a simple thing to most parents. We laugh with our children. We cry with our children. We get mad at our children. What I realized at that moment, was that I didn’t remember the last time I laughed with Hunter. I laugh with Grant all the time over silly things. But with Hunter, every day is such a struggle. Homework, baths, clothes, eating, it is all such a battle, that I am not able to enjoy just being his mom.

I dropped him off at school and wept the entire way home. I promised myself at that moment to try to make more of those moments.

Monday, April 1, 2013

Stop and smell the roses!

I love spring! Every year, I look forward to putting the spring wreath on the front door.  I love planting flowers and watching them grow (though my husband would tell you I’m not so great at watering them). I love the renewal of the trees as they bloom with color and the grass as it turns bright green once again. 

Yesterday was Easter, a renewal of the spirit. It was an absolutely beautiful day. My family and I went to church and then had a wonderful lunch together. We talked about the meaning of Easter and what it means in our lives. This year was different though, because for the first Easter, we were away from our extended family.

 I tried to make this holiday special for the boys and create our own family traditions. I made a Peeps cake and baked a ham.  We had Easter Baskets and an Easter Egg hunt for them in the backyard. I planned to watch Hop as a family and have togetherness.  Instead, the boys played with their friends outside, and Jeff and I watched National Lampoons Vacation on the sofa.

This year like every other Easter, did not go as expected. Every Easter morning with Hunter since he was three has been a struggle to get to church. Arguing over the shirt that doesn’t have the right texture, the pants that do not have an elastic waist, the shoes that are too tight or too loose.  Normally, by the time we get to church, we are exhausted, and the spirit of the holiday is gone!

What I have learned through the years since Hunter’s diagnosis is that I have to let some things roll off my back. It has been a struggle, but I believe I am finally getting there. It is a daily tug-of-war between my will to make things perfect and my will to be happy. 

In many ways, yesterday was different for me. I chose to be grateful for the fact that we made it to church!  I chose to focus on watching Grant sing "Allelujah" with a huge smile on his face. I focused on the joy on his face when he realized the Easter Bunny had delivered eggs in our backyard and dropped off Easter baskets. I chose to savor those moments that I know will be gone so quickly. I chose to let go of the things I could not control.

This spring, I am trying to renew myself. I am turning over a new leaf of happiness. I am going to make changes in this wonderful life I have been given.  I truly believe we are given many circumstances in life we can’t change, but what we can change are the choices we make in how we deal with these circumstances. This year, I am making the choice to love myself and give myself a break! I plan to take time “to stop and smell the roses!"