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Saturday, January 18, 2014

Not Ready for Primetime

He may be legally an adult, but that doesn't mean he's ready for primetime adult life.  You know ...like when you are responsible for meeting your own basic, human needs like um...feeding yourself!

Red gets up 20 minutes before the bus arrives.  He rushes downstairs to grab a bowl of cereal.
Did he wash his face?
I don't know.
He did take a shower the night before.
Did he brush his teeth?
Probably not.  Most days he carries his toothbrush and paste with him because heaven knows, he doesn't have time to do it when he wakes up only 20 minutes before the bus!

Before he left, I asked if he took his medicine.

He said, "I'm taking it now."

He goes to his adult transition cooking class without the three dollars he is supposed to bring to contribute to the meal.  Therefore, he has the opportunity to shop for the meal, but not to eat, because he didn't contribute to the cost.

He comes home in-between his class and his volunteer job for an hour.  I leave immediately to go get my nails done.  He spends the hour alone at home singing in the mirror.  He calls me to make sure I would be picking him up from his job and to let me know that his ride was late.

I remind him to close and lock my front door so that we would still have our belongings when I got home.

3:30 p.m. he calls me from his volunteer job and says, "Please pick me up on time.  I'm so hungry!"

"Why are you so hungry?" I ask.
"Because I didn't get a chance to eat." he replies.
When I pick him up I ask,  "Why didn't you eat when you were at home."
"I was singing. Can you please stop and get me something to eat?  I will pay for it!"
You bet your ass you will pay for it. 

We get home he's acting kind of wild. I ask, "Did you take your medicine this morning?"
He looks in the container where it is distributed. There it is!  The medicine was never taken.

As a result, of not taking his medicine, he went all day without eating.  He was too busy singing and forgetting everything.

ADHD is still very much alive and well.

Will he ever move out of my house? 

Here he is casually singing as he loves to do.  I must say this about the kid ...when he's singing, he may be hungry, but at least he's happy!


Tuesday, January 14, 2014

There is Hope!

When we are in the the trenches of raising our Aspergers children, we run into difficult periods.  This can be said of raising any child, especially during the teen years.  As parents we wonder, will we EVER get through this? Will this child ever be a person I can stand to be around for more than 15 minutes?  Maybe that's just me.  It's probably you too if you're willing to admit it. It may sound terrible, but to be brutally honest, the teen years are rough.

There are times, when I just want to hide in my bathroom with the door locked, with my laptop and a glass of wine.  Yes. In the bathroom.  You see my bathroom is inside of my bedroom. I can lock my bedroom door and then lock the bathroom door for extra security.  I turn on the fan and wallah! I can't hear a thing. TMI? Oh well. 

Somedays, I don't have the energy for another fight.   Like when they are talking a million words per minute, without ceasing.  When they come across as rude, disrespectful,  know-it-alls.  I know it's not really about me.  It's about the pain that they are experiencing.  It's about what's going on inside their own heads.  But it feels like it's about me and it hurts.  Sometimes, the barrage of negativity and the woe is me, my life sucks, mentality is too much to deal with.

I'm in the throes of this with Blue.  Finally, in this 18th year of life I see in Red,  there is hope. Though he has a long way to go to really grow up ...geez he has come such a long way!

If you've been following my blog for a while, you got to know my friend and fellow Aspergers mama Kathleen when she wrote  "If You Really Knew Me" A guest Post  back in September of 2013. She is a mother of three handsome, amazingly unique young men with different abilities. They are ages, 13, 15, and 20. Her boys have an alphabet soup of diagnoses.

A few days ago, she wrote a lovingly honest update on her son 15 year-old son Jay who has Aspergers. I think is worthy of sharing with all of you.  Without further ado...here she is.

By Kathleen Johnson

I have been bragging on my 15 year-old son sooooooo much lately.  Seriously, things were soooo bad not that long ago and now they are sooo good now, that I can't help but be in a state of amazement. He is definitely growing up. I never thought I would be able to genuinely say, I enjoy his company, but I do! 

For me, with 3 boys, my favorite child changes from time to time. At any time I usually can't get enough of one of them and my Aspie is that one these days! He watches his shows with me in my room, he is chatty Kathy with me. He has been waking up on his own and in a super mood. 

I have been telling him for years his hands are super rough (like he works for a living with them). He is lotioning them regularly because he said he doesn't want his future wife to have to deal with it.  He has been brushing his teeth and showering regularly without being prompted.  His gross hygienic habits seem to be a thing of the past. He has been keeping his room clean and has been generally cooperative with me and his father.  This is very out of ordinary. He isn't as overbearing with his older brother. They can have a regular conversation without anyone flipping out. That's huge!

Also, I asked him if he plans on going to college. He said of course. When asked for what, he said homicide detective or forensic anthropologist. I told him with his mental health history, I'm  not sure of homicide detective is an option.  He told me he had spoken with the career counselor at school (his special needs school) and she said that should not prevent him.


I am so flippin happy for his growth I just can't begin to convey to you all how far he has come!!! There is hope! 

But I have to say this... it wasn't until after the worst of puberty was behind us and equally important, as I see it is that he has been off all pharmaceuticals since May 2013. On Amino Acid Therapy and orthomolecular medicine (supplements) only.

I feel like I can breathe...like the feeling you get when you put the hyperactive baby down for the nap and they actually fall asleep.



Jay
Editorial Note: Amino Acid and orthomolecular supplement therapy may not work for everyone.  I tried this recently with Blue and because he is in the middle of puberty, and with his body's current chemistry,  aminos alone did not work for him. I will say that it is definitely worth investigating.

I hope that Kathleen's update brings you hope for your child.

~Karen

Monday, January 6, 2014

Not That Girl

I've been married for nearly 20 years to the father of my children.  It's really unbelievable that two human beings who are so very different in so many ways, can actually stay married and most of the time happily, for that long.  I remember when the Pastor said till death do us part I thought to myself, Yeah right! No freakin' way!  When he said, love, honor and obey, I nearly choked.  Should have had that part taken out.  You got the wrong girl if you think I'm going to obey my husband.  I didn't even obey my parents! Hence the huge amount of Karma I'm receiving right now.

I was 29 years-old when we got married and even though that's not that young, I had no idea what the hell I was getting myself into.  I did know this ...I found a man who loved me.  He was honest and trustworthy.  He was honorable.  He had custody of his 5 year old son.  What man does that? Steps up to the plate and is the primary caregiver to his child.  A responsible, trustworthy one.  That's who.  He was everything that my father was not.

Our marriage has been through a lot of ups and downs.  Good moments and moments where we wanted to kill each other.  Moments when I couldn't imagine being married to him a moment longer.  Moments where we fell in love all over again.  Moments where we I'm sure we both regretted our decision to marry each other.  And then finally, moments where we learned to accept each other for exactly who we are, and not who we want the other person to be.

Over this weekend, hubby went up to Dallas with my young cousin, to meet 2 of my other cousins for the Cotton Bowl.  Mizzou vs. OSU.  My cousins are alumni of Mizzou.  I was happy for him to have the chance to go have a "guys" good time at the big game with the fellas.  It was basically a 27 hour trip up, from Austin, tailgate party, game, spend the night and back the following morning.  Mizzou won! A good time was had by all.  Great! Wonderful. Right? Right!

Handsome Hubs & My good looking Cousins
Mizzou vs. OSU 
Of course, I'm here holding down the fort with the boys.  Hubby comes home tired.  He takes a nap while I go out to grab a late lunch with my mom and Blue.  Next it's on to grocery shopping. Woo hoo! Fun right?  Towards the end of shopping, hubby texts me and says, I'm going to go out and grab myself a bite, maybe watch a little football.  Oh and by the way, at 9 there's this party for T.  (It's a guys version of a baby shower, with golf, no gifts and plenty of drinking.)

Really now? You just got back from the trip to see the big game and now you're going to a party the very next night?  Wow! Must be nice!  So yeah.  I was kind of pissed and I had to at least call him on it.  He felt guilty and by the time I got home from the store, he decided to play the martyr and not go. I insisted that he go ahead and go. I didn't want to be that girl -who holds on to her man like he's in high school and needs permission to do everything.

You see, when I was in my 20's I had a boyfriend.  He was my first love.  Our relationship lasted for several years until he moved away to go to medical school. I would freak out when he wanted to do things without me.  Ultimately, the relationship fell apart.  Was it the timing? We were too young?  I'll never know for sure.

From that experience, I decided, that once I got married, I am not going to be that girl.  The girl who is so insecure, that she falls apart every time her man wants to have fun that does not include her.  I want a man who wants to be with me because he wants to be, not because I insist.  An adult should not be treated like a cage bird. Everyone needs a little room to fly.

My thought once I got home from the grocery store was basically this ...if your first inclination is that you want to go out 2 nights in a row, take your ass right on out.  If home is not where you want to be ...I don't want you here.  I can do fine all by myself.  I will be here when you get back.  And when I get ready to go do my thing ...I will fly and I won't look back.

I trust my husband.  We have both been trustworthy in this marriage.  I'm not saying that he has been a perfect angel or at least flirted with, or looked at another woman ...in fact, I'm sure that he has.  I know that I have!  Flirting is in my DNA (thanks Dad).  But we always come home to each other -faithfully.

Should the day come, where he no longer wants to do that ...it will also be his choice.  I am not that girl who feels the need hold on tight.  I may rag him and give him a bit of a hard time, here and there.  He may do the same to me.  But the truth of the matter is ...if he wants to be with me ultimately, he will be.

For 20 years come this June, being this girl has worked.  

Wednesday, January 1, 2014

2013 It's a Wrap

It didn't always feel like it, but in 2013 Our family did manage to make a lot of progress.  Blue started high school and came through his first semester with a killer GPA, despite the fact that "teachers are mean and give him bad grades."

Red actually, completed high school his high school credits and turned into a legal adult.  He is now 18. He grew spiritually as he attended a two-week Christian camp for kids on the autism spectrum.  He returned home, a person who no longer choses to express himself by using curse words.  He's also fixated on Christianity and how come the rest of of us are not as hardcore into our faith as he is.  You gotta take the good with the ...not so good I guess.

I wrote some killer blogs in 2013.  The most popular blog by far was written in July after the Trayvon Martin/George Zimmerman verdict.  "On This Night" was about how I felt tucking my own African American boys into bed, the night to the verdict.

I was featured and published on several additional autism/parenting blogs and various media outlets, including an interview that I did for Facebook media relations after I wrote the blog, My Facebook Life .  The article I wrote about my online support groups was featured on She Knows.com 

I also had an essay accepted for publication in an upcoming book written about parenting kids with hidden disabilities.

I was featured on a Blog Talk Radio show, "Back to Us", where I discussed Special Education Advocacy for parents.

The online support private support group I created actually thrived and became a lifeline for so many parents raising kids on the spectrum.  As well, for those on the spectrum themselves or with someone in their lives with Aspergers.

Hubby did his usual working his ass off to make sure that financially all of these things were possible.  He turned the big 50 this year and we had a great party to celebrate it.  We then took a trip to L.A. for the Playboy Jazz Festival and visited with my family and some of our best friends.  This was one of the best 2 weeks of the year! I will always and forever be a California girl.

It has been an extremely rough year for Blue.  His hormones, anxiety and anger have been completely off the charts, especially since high school started.  To be honest, trying to get him figured out and emotionally balanced turned our lives completely upside down for a good part of the year.  We've been living in an explosive world.  There were countless phone calls from school, plenty of days, missed, and countless meetings held at school, in therapy and with his doctor to try to help him navigate through this tumultuous time.

Honestly, dealing with the changes Blue has been going through this year left me exhausted and exasperated.  We have all been living, walking on eggshells, waiting for the next anger-filled, volatile,  meltdown.

Where I wanted to rev up my writing this year and actually get started on writing a book, I was forced to take my writing down a notch.  Where I wanted to have a daily exercise routine, including yoga and Zumba, I was often too spent to leave the house to go work out after getting them off to school.  It's unbelievable how much energy it takes to juggle these two boys out the door in the mornings.  It's like playing a game of chess with pieces that explode if you make the wrong move.

I became pretty depressed.  There was hardly any time or energy for anything fun, or social.  There was little mental energy left for planning, and getting away to get much needed breaks, even though I needed them more than ever!

When things seemed to go from bad to worse with Blue, internally I blamed myself for not being able to figure out how to help him.  All kinds of fears and self-doubt seeped into my being.  The daily deluge of negativity, self-loathing, anxiety and fear became contagious in our house.  Many days I felt lower than low.

The luxury of hiding underneath the covers for months on end, was not on the table.  I had to press forward, try to put on the happy face, try to be loving and encouraging to both boys, while feeling like absolute crap myself.  Hours upon hours were spent driving them back an forth to therapy, doctors appointments, academic and social activities.  All while my personal and professional life was at a sad, pathetic, standstill.

During this dark period, I spent a lot of time wondering about friendships that seemed to have dissipated.  My closest girlfriends that live here in Texas seemed to almost completely disappear from my life.  Daily, in my depths of despair, fear and self-loathing, I wondered what I had done to bring these friendships to this place.  In the quiet moments I wondered, why doesn't she reach out to me anymore? I asked myself this over and over and over again.

Occasionally, I would muster up the courage to reach out to my girlfriends with a phone call or a text.  I would usually get a text back.  But never ...a phone call.  I experienced various emotions about what feels like a loss.  I had lots of internal dialog about it.  I attributed the gravity of my negative thoughts to my own depression.   It could be nothing.  It could just be my imagination. What could I do about it?  I didn't have the time or the energy to fix these broken-down relationships.

I am blessed with many true friends that I have had over most of my life.  It wasn't until having these children that I actually experienced the friends who simply moved on.  I guess that's an aspect of adulthood, especially adulthood when the day to day of your life requires so much time and attention because of the responsibility of raising my high-needs children.

Sometimes I wonder, if I were still in L.A. with friends that I've had for most of my life, would our friendships break down because of the demands of our adult lives? Hopefully, I will never know.  I am still in close contact with all of my L.A. friends.  Some now are in other parts of the country, but we always manage to connect and pick right back up where ever we leave off.  There is always reaching out, and it is NEVER one-sided.

In fact, when I'm in L.A. all of my girls make time for me.  They have me to their homes.  We lunch, we dinner, we spa together.  Several of them have come to Texas, or we've met for girls trips in various locations.  Most recently, my girlfriend Mary came to Houston for business.  Months ahead of time, she contacted me to make sure that we could get together while she was in town.  In November we met for a fabulous weekend get-away.  I also got to see one of my Asperger mommies while I was there for brunch.

At the same time all of this was going on,  I began to strengthen my online friendships with other moms like me.  Women who feel my pain, who I could be totally honest with because in many ways we live the same lives.

My friend Kathleen in Denver became a lifeline for me, not just online, but I could call her if I needed to talk.  Kathleen has 3 sons, just like I do, with a range of diagnosis from ADHD, to bi-polar, to Aspergers.  Not only can she feel my pain, she lives my pain.  Yet, she was always there to comfort and encourage me.  She is such a positive light and loving spirit.  I couldn't have made it through the year without her. She even wrote a very successful guest post for me titled "If You Really Knew Me".



Elena sharing a bottle of wine with me



My kindred sister and friend Elena, lives in Miami.  We have yet to meet in person. She too has 3 sons, with issues.  She writes these beautiful words of encouragement in a blog called "The Laid Back Cloud of Peace", which always speak directly to my heart. She also reaches out to me on the phone, and online almost daily.  She puts a smile in my heart and on my face.  I love and follow the stories of her 3 boys, as if they are my own.  Especially her youngest, we call G3.  All of her boys names start with the letter G.  She is crazy as all get out! Yet, she is brilliant, and has such a loving heart and spirit.  We drink together from across the miles.  I so look forward to the day when our paths will physically cross.  That's going to be a beautiful day.

Elena also wrote a guest post for me, titled "Hope".  You can get to know her story by reading it and/or checking out her blog.

Each friend crazier than the next, brings me to my friend Sam who lives in New York.  She had an extremely rough year, going through a divorce and temporarily losing custody of 2 of her children in the process.  Now part of me thought, I don't have the time or energy for that! But my heart said otherwise.  Helping her, being a support for her helped me.  The first time, I heard her sweet little New York, jewish voice on the phone, my heart melted and I fell in love with her.  Even though there were days she was at her lowest of lows, she still encouraged me, listened to me and I tried to do the same for her.
Sammy @ the Beach
Sam kept me going through the summer with her days at the beach.  She would always post pictures.  I would encourage her to get off the couch, and go out and enjoy life, even during this most difficult time.  It's funny how I can live vicariously through my friends and encourage them to do things that I couldn't even do myself.   Sammy is another lifeline that kept me going in 2013.

I am so blessed to have so many friends, both online, and across the miles,  so many that I can not mention them all in this post.  I value my friends like no other treasure on this earth. Some I have had for a lifetime, some for a short time.  I appreciate that our paths have crossed that you have loved me and I you.

Me and Jen
This summer also met my white sister Jen through one of my online blogging networks.  Jen lives in Ohio.  She actually came to Texas to visit her mom and we got the chance to meet.  I got to hang out with her girls, and her mom down near San Antonio.  We had a blast.

I have to give an honorable mention to my brother Jim of Just a Little Blog.  Jim also helps me run my private support group.  According to him, he does all the work, along with the 4 other Admins.  Many a day, he is my only reason for laughing.  His daily antics with something as simple as an apple or an orange, can have me in stitches.  He may never know how much his fruit means to me.  (Inside joke...sorry).

I can't go without mentioning my online support groups of parents, bloggers, and adults and teenagers with Aspergers that I have come to know and love this year.  How awesome is it, to be able to log in at anytime and get feedback and support from other people who really get it?

So even though I am sad about friendships that seem to have lost their way. I have to see it as perhaps it's just not the season for those relationships.  It's hard, and I feel so alone some days.  I pray that the season for them will come back around.  Until then, I can not worry about what I may have done, or not done to make things fall apart.  I know that I have a loving heart and that I am a person who does good in the world.  I am a friend you should want in your corner.  In fact, I'm the best.

Until things come around, or the seasons change, I will try to remain positive, continue to help my children through these difficult years, and count the blessings, the support systems, the friends and the family who walk through my life, and help keep me afloat.

I will fill my life with simple pleasures that make me feel something good about each and every day.  In 2014, I hope to be able to keep myself on the priority list.  To make strides in my writing.  To grow spiritually, and to take care of me.  I want to go back to my art lessons and make yoga and meditation a part of my daily life.

Even though everyday when I look in the mirror, I don't always see an awesome human being staring back at me.  Sometimes, I see ...Ugh! You again. How did you get so old? What happened to your skin?  How can you be so lame as to let these children completely take over you life?  

Deep inside I know that my heart is pure.  I am enough.  I am worthy.  I do do good things in this world and I am loved by many.

My apologies now, if I did not mention you personally.  However, please know that if you are reading this ...I love you.  I appreciate you.  I look forward to continuing this journey together in this new year.