Summer Silence

The Summer break has come and gone….I survived!  I would have liked to blog during the Summer however the computers were usually taken and I was too busy planning places to go and things to do…oh…and breaking up fights.  So, the Summer got away from me and seemed to be very silent but it in no way was it quiet.

My main focus of the Summer was putting Will on a gluten free/msg free diet.  It was overwhelming at first but I have many friends who specialize in these kinds of things and they were very helpful.  Will has suffered with gut issues for several years as well as hive breakouts when he eats certain foods.  He was having more frequent allergy attacks and I knew we had to stop putting this poison into his body.  He was resistant at first but he now sees how much better he feels and he loves not having the attacks.  Will also started wearing contacts so that has been an interesting thing to tackle… along with the diet… before starting Middle School.

Joshua enjoyed his Summer as long as we stayed busy.  He begged every day to go to his favorite store and when I said no it would start World War 3.  He has a very hard time accepting that we are going to swim instead of shop.  If it were up to Josh he would shop every minute of every day.  He loves to walk in and out of stores, talk to the salesclerks like he knows them and he often enjoys just smelling the air of our local mall.  Oh…and he likes to spend money when he’s shopping…which starts another battle when I refuse to buy a 1987 video game to sit on his dresser.

Zach loved swimming this Summer and probably would have lived at the pool if it were possible.  He played Army almost every day with his friend Eli and stirred the pot with his brothers…causing many fights.  He cut his own hair….which I only noticed when I found the scissors and cut hair in the bathtub.  You may wonder how I didn’t know he cut his own hair? Well…I’m sure I was cleaning up a mess or breaking up a fight.  Zach enjoyed going to the Library and participating in the Summer Reading Program…even though he didn’t read one book.  All in all Zach was a very active 6 year old boy!

All boys are back in school now.  Joshua is struggling to fit into 8th grade but hopefully it will come. Will has almost finished his first week of 6th grade and seems to be doing well.  Zach started 1st grade and he’s up and ready by 5:30am.  He loves school and loves being with his friends.  I’m hoping for a great school year for all 3 and a time of healing for myself.  So…here’s to Summer of 2013!  Now on to greener pastures…

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On The Day You Were Born…

I was so excited when I found out I was pregnant for the second time.  I think a lot of people thought I was nuts because I had such a hard pregnancy with Josh.  I also was at the true beginning of Josh’s issues…he was two years old and already very demanding with his special needs.  However, I knew I wanted Joshua to have a sibling…hopefully a brother…and my hopes became true on June 17, 2002.

My pregnancy was wonderful…no sickness…no bed rest.  My labor was just as great…easy as pie.  William Campbell weighed 8lbs 4oz and was beautiful.  He looked like a true live baby doll.  I call Will my “best baby” because he was.  He only cried when he was hungry and I could lay him down awake and he would smile then drift off to sleep.  I truly feel that God made him that way because of the stress I had with Joshua.  He was like this little angel that came to show me love that I had not quite experienced before.  He was my first “typical” child.

I often feel guilty because I can’t remember a lot of Will’s younger days.  We were in deep with Josh and his soon to be Asperger’s diagnosis.  Will basically lived on my hip while I chased Josh everywhere and he had to go with me to all of Josh’s Dr. appointments.  Thank goodness I could just open my purse and he was happy.  It was overwhelming at times but the good outweighed the bad.

As Will has grown older he has had to endure a lot being a sibling to Josh.  He has been yelled at, hit and been the receiver of “Your Mom’s favorite!” many many times. I have often worried about him because he is my sensitive one…and has been hurt many times.  I always try to find time to talk to him about our crazy life and make sure he is ok.  Cliff and I try to spend a lot of alone time with him because he seems to need it the most.

Will was diagnosed with ADD and ODD several years ago so he too can be a handful.  I call him my lawyer because he can argue his point of view until he finally breaks you.  He can dish out things that totally upset Josh and many times I find myself between the two of them…my own Cain and Abel.  I do pray that one day their relationship will be better…

Happy Birthday Will….You are my heart and I pray that God will use you to touch others for him as you have touched me.

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Tired…

Summertime should be a wonderful experience for everyone.  I mean you get to be more relaxed, enjoy summer activities,etc.  I truly love not having to worry about homework and especially love not waking up at 5:45… however I miss my down time.  Having Josh home since December took away my down time…I know that makes me seem very selfish but my down time is crucial if I want to be an effective Mom…especially to my special needs kiddos.

Everyday I try to have a planned activity for us to go and do.  I do this for many reasons…mainly because if we stay home I have to break up fight after fight.  It is exhausting.  Yesterday Josh wanted to go to his new obsession…2nd In Charles.  This is a second hand store for video games, books and lots of other stuff.  Josh loves going there because they have lots of “retro” games and gaming systems that he wants to collect.  We usually go once a week if he has had a descent week with his behavior. It was a rainy day and we couldn’t go swimming so we headed to this favorite store.

As we walked through the door Josh took off toward the display case.  Now this usually means that he is “looking” for something …usually a “retro” gaming system.  He begins shouting “Mom! They have it! They have it!”  Before I knew it he had a sales clerk over at the counter pulling out a gaming system…a Nintendo system from the ’80’s.  I walked over to where he was and told him that I was not buying a gaming system.  “It’s only $35.00 Mom!”  Now this statement was not in a “speaking voice” it was a very loud voice…an embarrassing loud voice…

I told the salesclerk that we were not going to buy the product and she kindly put it back into the case.  Well…that’s when the “fun” began.  Josh began ranting to anyone that would listen …”My Mom is cheap!”  “My Mom will never buy me anything!”  “My Mom is the most selfish person I know!”  I truly wanted to run and hide.  I wanted to get into my car and drive as far away from Josh as I could.  I wanted to disappear….

As Josh was ranting he was getting looks from strangers…looks that were again…embarrassing.  I wanted to yell “He has Asperger’s!! It’s a form of Autism!! He has behavior that is beyond unbearable at times!! Someone rescue me!!”..but I didn’t.  Instead I walked around the corner and collected myself.  I walked over to him and told him to stop.  I told him that everyone was looking at him and he was acting crazy.  I told him we would never come back if he didn’t stop this screaming….

Ten minutes later he was apologizing…which he does every time after he has been super ugly to me.  It’s hard for me to accept his apology because deep inside I really do not think he understands…or means it…but because he’s my child I tell him I accept his apology and I try to erase what has just happened…but it’s hard.

I’m just really tired…mentally, emotionally and physically.  I’m tired of Asperger’s…I’m tired of not having a “typical” Mom experience….I’m jealous that other women have what I don’t have….I’m mad that everyday I have to use my brain constantly without a break…I’m just plain ole exhausted.

I know that today is a new day and I’m so thankful that there is night time….at least then I don’t have to think about Asperger’s …It’s a time to recharge my body, mind and spirit.  It’s my alone time…which I so desperately seek.

I know this post is not very encouraging but it’s honesty…it’s being “real”…which I hope I always convey…. It’s my life with Asperger’s….It’s my journey…good or bad.

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Summer…2013

Every year at the end of May I begin to panic.  I panic because I will soon have all 3 boys at home…ALL Summer…ALL day long.  In my Mother mind I begin to question my Mother skills and wonder how in the world I’m going to make it.  I question if I will be able to survive the fights, the meltdowns, the “never getting a quiet moment to myself” days and just the the plain ole Summer heat itself.  I realize that satan is attacking my thoughts and causing me to doubt myself and my God that will strengthen me for the job of Summer…but honestly sometimes satan wins…and I hate that!

I wish in my Mother’s heart that my boys would like each other.  Notice that I didn’t say “love”…although I wish that too.  I would just like for them to get along.  Sometimes I do feel like I’m raising Cain and Able…and their sidekick.   All of my boys are very different which makes for a very interesting Summer trying to keep them involved and active.  Josh of course is my Aspie…always wanting to do what he wants to do…never what anyone else wants to do.  Will is my quiet one.  He loves the computer and will play games all day long if I let him.  Zach is my active one.  Always ready to go and do…he’s up early and stays up late.  Busy… busy…busy.

So as a Mom I try to find the common denominator with all three.  For now, it’s swimming but I’m not sure how long that will last.  They usually do well in June but by July they are tired of the pool.  Then the Summer gets really interesting! This Summer I’m noticing a lot of differences too because of their ages.  My older ones look at me like I’m crazy when I mention the Library activities like Dino Man and Mr. Mac….and Zach gets excited.  I guess when they were little the age didn’t really matter but now that I have a teenager and one on the verge of teen years it’s getting more complicated.  Next Summer should be even more interesting…but I’m not going there yet!  Praying that God will give me strength each day for each battle …and I know he will.

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The Loneliness of Motherhood

In March of 1999 I became a Mother for the first time.  As I held my baby for the first time I didn’t know a whole lot…except that I loved him.  Cliff and I stayed awake the whole first night in the hospital watching him.  It was as if the adrenaline from “life” was just gushing through our veins.  It was the most wonderful and special time.  It was three of us now…ready to tackle life and enjoy every minute of being a family.

Over the past 9 months I had envisioned what my life as a Mommy would be like.  I thought about the late night and early morning feedings, the bubble baths, the birthday parties, the friends he would have, the Mommy and Me classes, the Library story times…the possibilities with my baby were endless…and then October of 1999 happened.

We went to our first play date at a friend’s house.  She had also had a little boy close to Josh’s age and my other friend had a little girl around the same time.  I was so excited to be with other girls and their babies because I had spent a lot of time alone with Josh.  I was a true first time Mom.  Josh was on a strict baby routine and he never missed his three naps…. Not even for Mommy social time.  At my friend’s house was the first time I saw Josh terrified by loud noises.  By loud noises I mean just typical baby noises.  Any time one of the other babies would squeal, cry or baby talk Josh would scream.  He screamed like he was being beaten…or hurt in a scary sort of way.  On the outside I tried to be calm and “pretend” that he was just tired.  I decided we would leave when he wouldn’t stop screaming.  I remember hating to leave because I so wanted to be with other Moms..but I had to. Once in the car Josh was fine.  Once he was removed from the noises and unfamiliarity he was happy.  I remember looking at him through my rear view mirror as he sat quietly….I remember crying because I knew something was wrong with my baby.  Motherhood was hard.

As the years went by loneliness settled in.  Due to Josh’s sensory issues I pretty much removed myself from the living.  It seemed like everything I tried to do or get involved in failed.  Library time, Mommy and Me classes, Women’s Bible studies, Play groups and even Church became a failure.  My “ideas” of Motherhood were not playing out as I wanted them to.  I often felt discouraged and alone.  I wondered if this was how my life as a Mom was always going to be.

In June of 2002 I held my second baby in my arms…and on January 2007 I held my third baby…the last baby for the Tullis family.  Through these two other lives God gave me a new glimpse of Motherhood…new experiences and opportunities of being a Mom that I’ve always wanted and desired.  God knew what I needed to make me the Mom he wanted me to be.  He took the lonely times I experienced and drew me closer to him.  He was my constant friend and was always ready and willing to listen.  God grew me into the person I am today through my tears, discouragement, depression, stress and all other emotions I carried..and still carry… during the lonely times.

I am thankful at the opportunity God has given me to be a Mom.  My three boys rock my world just about every day.  I am thankful for the different experiences that I’ve had being a Mom to the Sons of Thunder…the “typical” and not so “typical” experiences.  Motherhood ….it’s not for the weary!

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Same But Different

Lately I have been watching a boy named Chad on an MTV show called World Of Jenks.  Chad is 21 years old and has been diagnosed with Autism/Asperger’s.  As you watch Chad one cannot help but fall in love with this big guy and find amusement in how he handles life situations.  The last episode I watched was about his “girlfriend” who also has special needs.  He is seeking the advice of Andrew Jenks, the one who follows Chad’s life, on how to  talk to his girl about her love for Justin Bieber and the Disney Chanel.  I truly thought I was going to hyperventilate because these are two subjects that my son talks about a lot.  Chad’s thought process was so similar to Josh that I found it quite scary…in a funny sort of way.  I became more amazed when Chad started using the same words and phrasing that my son used to describe the two subjects.  Two young guys, with Asperger’s, struggling with a jealousy of the Bieb… speechless.

I have also connected with the Mom on the show.  Even though I do not know her I feel like I’m watching myself on tv.  In a different episode Chad is faced with a diagnosis of diabetes.  He becomes very upset and tells Jenks that he cannot believe this has happened to him.  Jenks goes on to sit down with Chad’s mom and talk about Chad’s love for food.  This is another area where I can deeply relate.  She goes on to say that she knows their choices with food has not been a good or healthy one.  She then talks about Chad and how he can argue with you all day until you finally cave in…he “wins” because your exhausted.  Wow! This too is our life with Josh.  He is overweight and I worry a lot about his future and overall well being.  I know many people wonder how I could let my son eat and drink the things that he does.  Until you have lived with someone with Asperger’s you cannot understand.  Every meal is a battle…every tv show has a food commercial to trigger your child’s obsession…..  One time I had to threaten Josh that I was going to call the police if he didn’t get up from the road.  He had chosen to lay in the street and get hit by a car if I didn’t talk him to Subway.  That is the extreme my Aspie goes to for food…

This family lives many miles away from our family and they probably have a different set of beliefs from us but the common bond is Asperger’s Syndrome…living with the good and the bad.  I hope that during Autism Awareness month you can try to understand the child affected as well as the family that is affected.  Believe me…when there is a diagnosis for a family member the whole family receives the diagnosis as well.  Try not to judge or voice what you would do in a given situation because believe me …none of us know anything until we’ve traveled the same road.  Give encouragement to families of special needs children when you can.  Tell them what a great job their doing…because believe me at some time or another they have felt like a failure.  Above all…be aware.  Raising awareness about my son is a mission of mine…whether it be through laughter or tears.  Asperger’s has forever changed me and my family.  Awareness can change the world….

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Strength…

Lately I have been reading books upon books about the survivors of the Holocaust.  There is something so inspiring about the strength the survivors possessed.  A strength that could only come from God…and God alone.  I read a story about a family that dug a hole into the earth and created a living space where they would stay for 2 years!! They had a German friend who would bring them food when possible…sometimes they would go days without…worried that their friend would not return…worried that their fate would end in death.  The strength these Polish Jews had to survive…their will to live…is why I find myself in awe of  them and their spirit.  It saddens me, however, to know that many Jewish souls are lost and still haven’t recognized Jesus as their Savior.  It cripples my heart to think about it….

Hans Asperger was a Viennese Pediatrician.  In the 1940’s he did serve in the German Army …toward the end.  There is controversy whether or not Dr. Asperger was a Nazi…I like to think that he was not.  According to the Northwest Center for Holocaust, Genocide and Ethnocide Education 80,000 adults with special needs perished in the Holocaust.  5,000 children with disabilities are thought to have died as the result of the Nazi plan to kill people with disabilities.  Dr. Asperger is who founded the term Asperger’s Syndrome and introduced many to a world they knew nothing about.  A world of the child’s own.  I’m sure many children with Asperger’s and forms of Autism perished in an unimaginable way during the Holocaust…I think of my son.

This month is Autism Awareness and as a Mom of an Asperger’s child I do want the world to understand my son and those all around us that are different.  “Different”  is what makes the world go round…right?  When I think about the  strength that special needs children possess…it is rare.  Most of them are fighters with strong wills.  I know God gave them these assets to help them further their lives ….their dreams.  Their strength, like the Jewish people I have been reading about,  truly comes from God alone.  He is the one who created them and knows everything about them…even the number of hairs on their head.  

I pray today for strength, widom and grace in raising an Aspie child.  I pray that I would also be strong when the storms hit…no matter how hard and challenging life can be.  I pray for our children…typical and not…that they will accept one another’s differences …and make the world go round …beautifully.

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