Husbands...well at least mine

Another story about bad spousal relationships.  I really think I am in a very dysfunctional marriage....with NO way out that is a good option.  The lesser of two evils is to stay with him and continue to hear his verbal abuse.  I am stronger than he is because I refuse to stoop to his level...most of the time.  This morning (like every morning) Bill woke up and started yelling for everyone to wake up.  I woke up....I went to the kitchen....I started putting my coffee on....and Bill is sitting at MY computer (AGAIN!) in the kitchen.  Most mornings I keep my mouth shut but this morning, I just couldn't.  SO, I said "you just want me to wake up so you don't have to do any work".  Because while I am working to get the kids breakfast (which Bill is perfectly capable of doing), packing their lunches, giving them their meds, etc.  He sits at MY computer on FaceBook eating his GD breakfast.  Well- As usual, Bill can't handle the truth and jumps up from his chair and towers over me with his shoulders back (imagine a bully on the playground- that's the visual) and says "I have to eat my breakfast, take a shower, and then take Michael".  By the way, I had turned away from him so I didn't have to see his bullying stance (It gets really old, you know).  I am sure that did not go over well in his mind.  I asked him why he had to be at my computer and not the other computer that I had put there for him.  He went back to the computer, unplugged the one I set up for him and said "well, I can take care of that!".  Sat down at MY computer again and continued eating his breakfast while on FaceBook.  REALLY?  How old are you?

He finished breakfast walks over to me, puts his hand on my shoulder (while I was cooking Lexi's eggs) and said "I know you don't think your comments hurt, but they do".  He walked off to take a shower.  Minutes go by and the phone rings.  It was Tanya asking if Michael is ready to go.  I had not even seen Michael yet.  He is usually sitting at the breakfast table at 7 eating his cereal.  Not this morning.  I called up and asked if he was ready and he said he wasn't and that they just texted him to ask if he wanted a ride.  I told Tanya he wasn't ready- she said she would have to leave then.  A couple of minutes later Bill walks in asking who was that?  I told him that it was Tanya (I should have lied!!!).  Yesterday Bill was really angry because I didn't tell him that Tanya was taking Michael (which I had NO clue about! yet Bill seems to think I keep it secret from him to annoy him!).  He went on and on about how I should tell him these things so he didn't have to rush around getting ready.  He would be able to enjoy his breakfast, etc.  SO, today....after I told him that Michael didn't go with Tanya because he wasn't ready....Bill said "So, you are going to take him then?".  I said no "you need to".  OH MAN....to make a long BILL RANT short- he said he would rather go in Lexi's direction (opposite direction from work-- yeah, that makes sense!).  He went on and on about how communication is important and it would be nice to be told when Michi is getting a ride....yada yada yada.  I am so bored with that speech....he is such a blame game guy!  He then says "Just to make myself clear" (after he ranted for 5 min--I think I got it!) and I said "I got it".  Bill's reply:  "That's what Maggie does!".  So I said "Ok, let me tell you what I heard"...at which point I summarized his rant.  Got it.  Check!  Off with Michi he went....poor Michi.  What an ASS Bill is!

Letter to Children's bells parents

I am going to be a bit bold here (to some of you that comes as no surprise).  First of all, I would like to put a disclaimer on this email and that is to say that none of my opinions have been endorsed by the church or discussed with anyone at church.  Also, it is meant as food for thought and not an attack on any one particular person.  I have been thinking about this over the last couple of days and just have to express my feelings.  So, here goes... on Sunday the kids played bells with several missing kids.  Some of those kids had been excused with very good reasons and some just decided to do something else, stay home, or whatever.  As you know, I play bells in the adult choir.  I can tell you, it is exceedingly difficult to play a piece with ONE person missing, let alone several.  I was very disappointed to see the amount of kids who were missing this past Sunday.  And the quality of the piece reflected the lack of children-- who had practiced the music in advance.  My children are expected to be an integral part of the church being servants of God and to the incredible community we have at Mountain View.  My girls have been expected to play bells and sing in the children's choir.  They are expected to use their talents and gifts or learn other gifts to share with the congregation to enrich the life of our church.  There have been times (and this past Sunday was one of them) that my children have begged me to let them miss a practice or not go play bells or sing in church.  Lexi was sick on Sunday morning, when she came to me that morning before church, she was pale, her glands were swollen, and she just looked like death warmed over.  I loaded her up with Tylenol and Advil and said "Lexi it is your duty to serve your church and it is your responsibility to play along with your friends in the bell choir.  I am sorry, but you will have to be there or you will disappoint Danya, your fellow bell ringers, and the church community.  It is one thing if you are part of a singing choir, but bells is another story".  She went, she played her bells and when there were missing practiced bell ringers, it messed her up.  She was disappointed but now understands how important it is for her to be there every time.  I am NOT meaning to toot my own horn here.  James Levie was also one who was not feeling well, yet he was there.  My point of bringing this up is not really about last Sunday.  It is about my disappointment in society and parents today in general.  The quote Steve had up on the screen Sunday morning is fitting for my preaching here (sorry...I am preaching and I am preaching to the choir for some).  "Never doubt that a small group of thoughtful, committed citizens can change the world.  Indeed, it is the only thing that ever has." ~ Margaret Mead ~  As parents, our role is to teach our children responsibility.  To teach them how to stick to commitments and how to prioritize (among other important qualities).  As Christian parents, our moral obligation is to teach our children about faithfully serving God in ways that will please Him and our church community.  Distractions that our children have these days makes it VERY difficult to be a parent...NO doubt.  Distractions make it tough for us to see the forest for the trees and to prioritize.  But next time you question whether or not your child should or shouldn't stick to a commitment, ask yourself "What would Jesus do?"  It's pretty simple, really.  

One last thing....I hope this email motivates you to be more a part of our wonderful church community and to teach your children to be thoughtful and committed citizens of our beautiful church and in our society.  I sincerely hope this email does not encourage you to have your child quit the bell choir.  Again, it is not meant to make anyone feel badly about themselves.  We NEED your children (in fact, we need MORE children to commit to bells).  We LOVE your children.  The Church WANTS your children to be up there playing their bells and serving God.  YOUR children bring smiles to every single person in that congregation when they play bells, sing in the choir, or perform in any youth activity.  The children keep our church alive with excitement!  If you have a problem with my email, PLEASE come speak with ME.  

Maggie's Community- A beautiful thing

Maggie update 4/24/12

It has been 5 weeks since we have seen or talked to Maggie.  Today we were able to speak with her.  Oh MY GOSH--It was so nice to hear her voice.  She sounds great.  She was a bit verklempt at first.  It was so sweet.  (I was surprised that I didn’t follow suit!)  However, she has a great attitude, she is learning new skills, working on her deficiencies and learning about her strengths.  I am so proud of her.  She has been on my mind for all these weeks but after talking to her today I was thinking about what could possibly be the reason she seems to be doing so well.  Frankly, I thought she would be struggling so much more.  Yes, she has her moments.  She says she gets very homesick.  She says she struggles with group dynamics and getting along with the girls.  She struggles with the obstacles such as hiking with a 50 lb pack on her back in 90-degree heat and enduring a long day of hiking to get to their destination.  But what keeps her going?  What motivates her to persevere?  What keeps her smiling? 

Parenting is tough.  Parenting comes with all kinds of distractions, especially these days.  Kids have SO many choices.  Kids have SO much more at their fingertips than I did when I was young.  Life was so much simpler then (yes, I am OLD!).  There’s FaceBook, iPods, iPads, computers, cell phones, texting, choices in afterschool activities (way more than I had), and SO MANY choices—PERIOD (just look at the shampoo aisle at the grocery store!).  How can you be an effective parent these days with all these distractions and choices?  I believe parenting is a very serious occupation.  It is met with all kinds of trials, whether you have a typical kid or a child with challenges.  It is a parent’s obligation to teach accountability, prioritization, commitment, responsibility, thoughtfulness, kindness, morality, respect, work ethic, independence, self-reliance, community awareness, and good citizenship.  That’s a LOT!  So, what is the secret to making all of that happen?  I truly believe it takes a village to raise a child.  I believe it is being part of a strong community.  In our case, it’s being a BIG part of our church.  Over the past few weeks, Maggie has been almost overwhelmed with letters (mostly from our church but also from other caring friends and family).  She has had people writing her some of whom she doesn’t know.  The church has been supporting her emotionally and prayerfully.  Her church family has held her up high.  AND, it is making a difference.  She said she has received so many letters and it makes her feel good.  It makes her feel loved.  It makes her want to work hard.  It helps her overall attitude.  For that I am eternally grateful!

I have worked hard as a parent to teach my children all these parental responsibilities.  I am a firm believer that being a good citizen is the basis for being a good person. My children are expected to be an integral part of our church and the community.  My children are expected to be servants of God and to the incredible community we have at Mountain View Presbyterian Church (even Nicolas).  My girls have been expected to play bells and sing in the children's choir.  They are expected to use their talents and gifts or learn other gifts to share with the congregation to enrich the life of our church.  There have been times (and this past Sunday was one of them) that my children have begged me to let them miss a practice or not go play bells or sing in church.  Lexi was sick on Sunday morning.  When she came to me that morning before church, she was pale, her glands were swollen, and she just looked like death warmed over.  I loaded her up with Tylenol and Advil and said, "Lexi it is your duty to serve your church and it is your responsibility to play along with your friends in the bell choir.  I am sorry, but you will have to be there or you will disappoint Danya, your fellow bell ringers, and the church community.  It is one thing if you are part of a singing choir, but bells is another story".  She went, she played her bells and when there were missing practiced bell ringers, it messed her up.  She was disappointed but now understands how important it is for her to be there every time.  I am NOT meaning to toot my own horn here.  But, it does illustrate the issues parents have today.  Distractions.  One child in the bell choir was allowed to go to a baseball game instead of playing his much needed bells.  REALLY?  I truly don’t understand how a parent could make that call.  Playing bells is more than a team sport.  It is the ultimate in group dynamics.  Without even ONE bell the melody is lost and other bell ringers make mistakes because they rely on the note before them to find their note and timing. 

To bring this back to the point of Maggie.....it makes me realize that the decision we made to send her on this journey was a pretty darn good one.  We were not making headway with her at home.  We needed more for her and from her.  She needs more than us.  She needs a community of people who can give her more than what we are able to give.  She needs to learn that without her efforts her team/group/family/church or whatever the case may be is weakened.  She needs to understand how important her efforts are to make her community better.  She needs to learn how to be part of a community without distractions.  Maggie is learning that she is part of a team and an integral part of that team.  She is learning that her community (her church family mostly) is important.  I really feel that the cards and letters from home are making a difference in her attitude.  I truly think she feels the support and she is motivated to excel and do her best because her team, her friends, her community is strong.  I am forever indebted to all of you who are supporting Maggie throughout this journey.  The quote of the week is:    "Never doubt that a small group of thoughtful, committed citizens can change the world.  Indeed, it is the only thing that ever has." ~ Margaret Mead ~

What ifs…

I have been thinking a lot lately about Maggie and how she is doing out there in the wilderness in Utah.  It has been a bit quiet around the house…and Easter Egg dying didn’t have the drama we usually have.  AND, I am trying to figure out what I should do with myself with all this free time!  It’s quite an adjustment...

I had a dream last night that I went to see her (we DO get to go see her May 10-11 for a Parent workshop!).  However, in my dream I wasn’t allowed to see her because she had not met the criteria for us to see one another face-to-face.  WOW….I don’t even know what that means. (Nobody knows what it means, its provocative…no its not--it gets the people going J -reminds me of her with her obsession with RAP!).  And I laugh a lot with her about that stuff….so, I miss her.

BUT….what if we had not sent her on this journey?  What if we had kept on going along…hoping we could make a difference?  Hoping we could just work that much harder, push her that much more, be more consistent, and not back down from her constant pushing/negotiating/arguing… the biggie…WHAT if…this program does NOTHING to help her?  What if this is all a scam…all a shot in the dark?  What if she leaves there after 10 weeks having made no progress?  Well…..for me it is simple.  I don’t spend too much time dwelling on all of that because it makes no sense to waste time thinking about it.  We made the decision and now it is up to her to OWN the experience (as Robert so wisely advised her to do).

As parents our responsibility is to give our children the tools to live independently, responsibly, and morally.  A parent’s job is to provide opportunities for our children learn how to make good choices.  It is our job to protect them.  However, we also need to know when to push them.  We need to make decisions that sometimes don’t have clear outcomes.  We need to make some TOUGH decisions.  Parenting is NOT easy and it comes with NO textbook.  Have you ever noticed that there is no book called Parenting for Dummies?  Maybe that’s because parents should not be dummies!  But I suspect it’s because there are too many variables.  No child, no parent is the same.  Kind of like snowflakes!

Nicolas is one of those snowflakes.  He has Williams Syndrome.  Williams Syndrome is a rare neurodevelopmental disorder characterized by a distinctive, "elfin" facial appearance, along with a low nasal bridge, an unusually cheerful demeanor and ease with strangers; developmental delay coupled with strong language skills; and cardiovascular problems, such as supra-valvular aortic stenosis and other cardiovascular anomalies.  Nicolas was born with a severe narrowing in his Aortic arch (called Coarctation of the aorta).  He had surgery to correct that when he was 5 weeks old.  In the “olden days” Nicolas would not have survived.  That surgery changed the course of his life and ours.  Nicolas has been in and out of the hospital.  He has had many surgeries and procedures.  He is fearful of hospitals and any time we go to a doctor he asks the questions “no shots?  No mask?  No surgery?”  When he knows for sure that the answer to all of those questions is no, he says with relief “phew!”  What IF he had not had that initial surgery?  How different our lives would be.  When Nicolas was 8, he was a ticking time bomb.  His blood pressure was 180/100.  He was on max doses of every class of blood pressure medicine.  He was on 9 blood pressure medicines!  When I went to pick up the medicine at the pharmacy the pharmacists would ask how old Nicolas was—is he 80?  Each night when I put Nicolas to bed I had tears in my eyes as I kissed him goodnight...wondering the unthinkable.  It was the most stressful time of my life.  I spent countless hours in doctor’s offices and on the phone asking if there was anything we could do for him.  I cried a LOT.  I had developed a DEEP love for my friendly and cheerful child and I would do ANYthing to help him.  EVEN if it meant doing an extremely rare and almost experimental surgery to “fix” his Aorta.  I had to make a decision that was very controversial.  As his parent I had to make the toughest decision anyone could ever imagine making.  Should I put him through surgery in HOPES that it would make a difference?  Do I go against all but one of his doctor’s recommendations?  One doctor asked me “What if he dies on the table?  Wouldn’t you rather have the opportunity to enjoy whatever life he has left in him?”  Wow....tough question.  However....I have a degree in nursing (thank God!) and I knew too much about the consequences of blood pressure in the ranges Nicolas was experiencing.  I was more fearful of that, than taking the chance that a skilled surgeon could make a difference.  I went forward confidently-- knowing that there was a 50-50 chance that Nicolas would die on the table.  I had to think positively.  I had to think how great it would be if this surgery “fixes” his problem.  I had to make that decision even though there was a BIG what if?  So, I was thinking—what if he survives and has a healthier life because of it?  I was willing to take that chance.  The way I saw it was that status quo was not pleasant.  I don’t “do” status quo well.  Ask anyone who knows me.  A teacher told me when Nicolas was 11 that he would never read.  He is reading because I fought the system.  Nicolas was not riding a bike when he was 12 despite all our efforts.  He is now riding a bike.  I can tell you that before I fought for all of these things, I had serious doubts that any of my efforts would make a difference. 

So here I am today with serious doubts that putting Maggie in a therapeutic program is going to make a difference.  After all, she has a fundamental reason for all of her idiosyncrasies.  She has Asperger’s.  Many people question WHY I would send her away from the security of her own home in HOPES that she would change her ways.  My question to them is WHAT IF I didn’t?  What if I kept things status quo?  What kind of adulthood would she have?  I am going with the same answer I had when I sent Nicolas into that operating room...what if she comes out on the other side of this with more effective coping mechanisms to handle life’s challenges?  What if she CAN modify her reactions to what society expects of her?  That’s where we are today......praying that it will have a positive outcome.  SO, next time YOU have a big what if question....think about the positive outcome and go with that!

Love and blessings!

Laura

Impact Letter for Vantage Point March 2012

Dear Maggie,

You have been in Utah for 9 or 10 days now and we wanted to give you more of an idea why we decided on sending you to this program.  Your behavior was having an impact on the family and it was very disruptive.  We would like you to understand exactly what we mean by giving you specific examples.

Dinner time--Most times when we sat down to eat as a family, you became irritated by minor noises, facial expressions, humming, whistling, movements or comments and glared or raised your voice to correct the offending person. If Lexi tried to talk, you would interrupt or criticize what she said.  If we asked you to stop glaring, talking, or criticizing, you reacted with anger and you argued or muttered insults until everyone at the table was frustrated with your behavior.  If/when we asked you to leave you would storm off screaming, yelling, and banging things on your way up the stairs.  This behavior scared Nicolas and Lexi and they would become very upset.

Entitlement of the living room-- You would sit down to watch a show or use your computer and if Lexi or Nicolas walked by or sat down you would protest that they were bothering you or it was YOUR show to watch alone.  You yelled at them and when we stepped in to say the room was for anyone’s use, you would make it agonizingly difficult to be in the room with you. 

Your overall sense of ownership and entitlement--We were frustrated by your lack of sharing when it came to anything.  Whether it was an old piece of clothing that you had grown out of, a bag of chips, a magazine, an ice cream drumstick, or a book…you failed to consider that these items were communal.  If you weren’t using an item and someone else wanted to use it, you would snatch it out of their hands.  Even if you hadn’t touched the item in over a year, you suddenly became interested in it because someone else wanted it.  Examples include the Tamagotchis, Kit the American Girl doll and The Hunger Games book. Rarely, if ever, did you share anything, yet you expected the rest of the family to share their items with you.

Complaining when asked to do your chores-- We expect everyone to contribute to the maintenance of the household, yet we felt like we had to walk on eggshells and choose which chores to give you for fear of the repercussions if you had a chore that overwhelmed you.  And, then when we asked you to do your chores you frequently said “it’s not my chore!” or “in a minute” or “can I do that later?”.   If we said no, you would argue, throw a tantrum (sit on the floor and cry), or slam things around. It was extremely rare for you to just do the chore when asked.  Your constant manipulation regarding chores made it extremely difficult for us to carry out family life.  It has appeared as though you have no respect for the responsibilities of being a part of a family unit. It has required so much emotional stamina to coerce you to do what is expected of you. We all became exhausted and impatient. The constant battle tended to “let you off the hook” because rather than force you to do what you should have done in the first place, we chose to keep the peace and let it go. Subsequently you took advantage of the system. This frustrated all the adults to no end. 

Constant negotiating-- Do I really need to go to diving tonight?  Why do we have to study Geometry tonight…I don’t have any homework in Geometry. Why can’t I do this chore tomorrow?  Can I switch chores with someone else?

Your Car behavior—you “owned” the radio, and if anyone sang to a song on the radio you would change the radio station.  It caused a lot of conflict and tension and made car rides MOST unpleasant. 

School work: You did the minimum studying for tests, doing geometry, doing your projects, and choosing your course-load.  You are a very bright young lady who should be taking at LEAST honors courses and yet you refuse to stretch yourself and do your best work in everything. 

Managing your daily life/grooming:  You don’t get yourself up for school (independently).  You can’t part and brush your own hair.  You don’t brush your teeth on a regular basis.  You eat your food with your fingers.  Your underwear is frequently showing; you are too lazy to put on a belt.  You have all kinds of wonderful jewelry and you refuse to wear it because it takes that extra minute to put it on.  You struggle with wearing pads or putting in a Tampax and then you bleed on your underwear and leave them lying around your room.

Diving…you tried to get out of going to diving when you knew your coach would ask you to do a dive you were scared to do.  You refuse to push yourself. 

Lack of Social interaction or initiative -- You were asked to join a club or two at school so you could get to know kids who share your same interests and become more involved in the social aspects of school.  You never even tried to go to a club.  You went to the library rather than branch out of your comfort zone.  You would frequently protest to go to youth group activities yet when you were made to go, you had a great time.

Possessiveness with relationships—You make it exceedingly difficult for friends and family members to have relationships with anyone other than yourself.  For example, you get your feelings hurt when mom has a close relationship with another person (i.e. Brittany, Michael, or any other caregiver in our lives).  You get very upset when Tanya does things without you or says she is too busy.  You take it personally rather than understand that others have their own lives.  Behaving this way toward Tanya has caused tension between you and Tanya.  You don’t seem to grasp that you have a part in this tension.  You blame her for not wanting to call you or talk to you rather than taking responsibility for your behaviors toward her.

We love you very much, Maggie.  We think of you often and hope you are taking advantage of this opportunity to grow and learn.  You have so many unique and wonderful qualities.  It is our hope that you develop your strengths and learn to manage your challenges.  We would like you to look at yourself, come to terms with why you are there, and take responsibility for your actions. We would like you to gain self-esteem and self-confidence so you can accept what has to be done and succeed. We want you to put forth effort and do your best in every situation, even if there is no immediate reward.  Often the most difficult challenges are the most rewarding to overcome, because the rewards don’t come easily.  If you can grasp this concept you will be on your way to a life of independence. 

Love and smiles,

Mom and Dad

Marathons

I am going to post something a bit controversial here.  Many of you are thinking…and what’s new with that?  I am always living on the edge.  J  I have never been one to be politically correct.  I have NO filter (so Bill says).

I was running the other day.  It was a beautiful day in Arizona (yes…a bit hot--almost 90!--for this time of the year, but the sun WAS shining- what’s bad about that in March?).  I was wearing my new pair of Vibrams that Ted talked me into buying and it was wonderful to be out there running again.  It felt fabulous!  I recently started running again because a friend challenged me (without knowing it).  There is one thing for sure, don’t challenge Laura Holgate.  Anyway, I haven’t run much in the past several years for a few reasons.  First, time just has not allowed me the luxury.  I stopped running when I had Nicolas.  Things have been just a tiny bit busy for me over the past 14 years.  I was busy with Nicolas in and out of the hospital, having my third child when Nicolas was not yet walking, Maggie being diagnosed with Asperger’s, to name a few distractions.  Secondly, my aging body just didn’t like it when I ran.  My body would scream “why are you doing this to me?”  I used to run 6-13 miles/day, I did Marathons, I did triathlons, I swam in the La Jolla cove, I did the Alcatraz triathlon when it wasn’t as well known as it is today (that was back in 1989!).  SO, I was quite active.  Running was a passion of mine.  I loved how I felt when I ran.  THEN came kids.  I didn’t need to run a marathon to get in shape.  I was in the best shape I have ever been in when Nicolas and Lexi were little.  I had a 5 year old, a 3 year old (who didn’t walk) and a baby!  I had two kids on either hip. One who was a toddler!  And I was ALWAYS on the go.  Honestly, I probably did 2 marathons per day…without getting a medal.  Which brings me to my point…and this is where it might strike a nerve…

I don’t understand what it is about running a Marathon like the New York or Boston or PF Chang that deserves accolades.  Ok…it’s great that you ran it….but does running the marathon deserve praise and adoration?  Or comments like “Wow, good for you”, “I am so impressed”, “I don’t know how you did that!”, or “you are such an inspiration to me”.  I have a hard time comparing running the PF Chang Marathon as an inspiration to someone who gets up in the morning, struggles to get their child out of bed and get them on a bus to go to school (all the while the child is screaming, kicking, and quite possibly hitting) and yet still has the energy to advocate and fight fights that are more difficult than any marathon I have ever done.  When I was running the other day I was struck with the fact that I am SO lucky to be running- it is a gift to be outdoors soaring along on my feet.  I am lucky to have the legs to run.  I was struck with the fact that I have friends who have children who will NEVER run.  I was thinking that my very good friend, Melissa, is struggling right now just to raise her right arm above her head.  Thinking of those early days of running my “mommie marathons” every day make me wonder how the heck I did it.  I am so impressed that I made it through those tough days (and I am still doing it!).  I look around at my friends with children who have challenges and think, wow….good for you!  Good for you that you fight for their rights, that you are doing your best to give your special needs children what they need and you don’t give up.  My friend, Jill, fights for her child who has Duchene’s muscular dystrophy…she frequently flies to Washington to bring awareness to congress and get her child the medical support he needs.  That is quite the marathon!  Having a child with autism/asperger’s is more exhausting than you can imagine.  Yet my friends—Ted, Marci, Julie, and Melissa—run that marathon everyday of their lives.  They humbly go about running their Marathons…they never ask for people to cheer them on!   Nobody is playing music while they run that marathon, nobody is standing there screaming “good job!”  “good for you”.  But, they do it because they know they have to and they want to do it for their children.  God is cheering them on!  And, that is good enough for them.

Running the PF Chang marathon or any other marathon is a self-imposed and chosen activity.  Running a marathon like that is most certainly not for anyone else but for the person who runs it- it is the ultimate in selfishness.  I KNOW, because I did them—it was for me…and me alone!  When I did those Marathons and triathlons I loved it.  I loved training for them.  I did them because I COULD!  I was so lucky to be able to run.  I will never forget my grandmother (who was in her 80’s) asking me….”so, WHY are you doing this Alcatraz Triathlon?”…my reply was “because I can”.  So, the next time you go out and run…think of your blessings.  Know you are running because you can.  Maggie is out there in the wilderness trying to find her Marathon legs.  She needs this training so she is prepared for her life of MANY Marathons.  I know God is cheering her on…..please join Him!

Amen and Thanks be to God!

Looking for Gifts in Asperger's

Looking for Gifts

A friend challenged me tonight--Maggie’s gifts need to be posted.  I will admit….having a child with Asperger’s it is sometimes difficult to see gifts regarding this diagnosis.  BUT, I also admit…I am a “tell-it-like-it-is” kind of gal.  I don’t sugar coat much.  I am NOT a rose-colored glasses kind of person (that’s Bill’s job).  In fact, I would say….I am, to a fault, WAY too honest and realistic.  I tend to offend some people because I am this way.  My best friends have learned that they can come to me to get the honest truth.  They know they can come to me and they will get the straight answer…not the answer they “want” to hear.  So, that last post was probably too negative for some….but it is reality.  HOWEVER, having Asperger’s does come with benefits!  These are some things Asperger kids have in common:

·      Drinking and doing drugs is illegal…therefore, you shouldn’t drink or do drugs

·      Obey laws/rules at any cost….even if it means you get bullied because you are a goodie two shoes

·      Wearing make-up is over-rated, who cares what you look like?

·      What do you mean it took you an hour to get dressed?  Why?

·      Being brilliant is just part of having Asperger’s.

·      Lying is wrong (lying by omission is ok).

·      Texting while out with a friend is wrong.  You should have complete attention paid to your friend.

Those are a few….I challenge you to share your thoughts specifically about Maggie and your observations of her.

Laura

Asperger's

Asperger’s

What does Asperger’s mean to you?  What emotion (if any) does it evoke?  I would venture to guess….most people who hear that word have no emotion attached to it.  It evokes a response such as “yeah…ok…I have no idea what that means” and most people just leave it at that and move on with their day.  I, on the other hand, am deeply affected by Asperger’s.  I live with it everyday.  I have a daughter with Asperger’s.  And, there is no cure.  She will live with it the rest of her life.  I can’t take her to the hospital and do surgery to take it out.  I can’t take her to a clinic and give her radiation or chemotherapy to eradicate the “bad cells” making her “sick”.  She has NO chance for cure.  SO, the only thing we can do is give her tools to help her manage it.  We can help her find coping mechanisms to be a successful member of society.  All of this takes patience, true grit, perseverance, and compassion. 

Asperger’s characteristics are as follows:

·      Insistence on sameness/fairness: easily overwhelmed by minimal changes in routines, sensitive to environmental
stressors, preference for rituals.

·      Impairment in social interactions: difficulty understanding the “rules” of interaction, poor comprehension of
jokes and metaphor, pedantic speaking style.

·      Restricted range of social competence: preoccupation with singular topics, asking repetitive questions, obsessively collecting items.

·      Inattention: poor organizational skills, easily distracted, focused on irrelevant stimuli, difficulty learning in group
contexts.

·      Poor motor coordination: slow clerical speed, clumsy gait, unsuccessful in games involving motor skills.

·      Academic difficulties: restricted problem solving skills, literal thinking, and deficiencies with abstract reasoning.  Easily overwhelmed by homework assignments, tests, etc.

·      Emotional vulnerability: low self-esteem, easily overwhelmed, poor coping with stressors, self-critical.  High anxiety, easily overwhelmed and tipped to a fight or flight response.  Meltdowns/tantrums are a common occurrence, even in older kids.

·      Behavior serves a function, is related to context, and is a form of             communication.

·      Maturity is delayed.  Most Asperger’s are about 3 years behind typical maturity levels.

Next question you might ask:  Why do you want to change someone with Asperger’s.  My answer is why not do your best to help someone with a disability so they can have the best chance possible for a life of independence?  I am not proposing changing them (as I said before there is no cure), I am proposing giving them tools to assimilate into society to their best potential. Why do we do surgery on a child with a heart problem (for example my son).  Why do we cure someone with Cancer?  Why do I work so hard to give Nicolas skills such as reading, riding a bike, and counting money?  Why don’t we accept things the way they are?  Because we want the best for our children.  I see Maggie struggle on a daily basis.  She has a very difficult time getting along with others and understanding her behaviors and how they affect others.  She struggles with close friendships.  She struggles being in a room with a lot of noise.  She has told me that hearing me whistle sounds shrill and piercing, that it feels almost painful.  She insists on fairness; which causes conflict with others.  She struggles with doing tasks that seem overwhelming.  She doesn’t read social cues well and therefore gets bullied on a regular basis.  She spends 95% of her weekend evenings in her room alone.  NOT normal for a teenager.  She doesn’t like it.  She cries because she sees her friends on Facebook out and about doing social things…and she is never invited.  She doesn’t know how to initiate friendships.  She is shy and insecure.  She is awkward and unaware of how she appears to others.  She is immature.  She has meltdowns and tantrums on a regular basis at home, causing conflict and tension.  In turn, it erodes her self-esteem.  What kind of life is this?  It’s lonely and it is unhappy.  I want to help her figure out how to cope with all of this in a healthy way.  I want her to understand herself and learn how to recognize when she is feeling overwhelmed and anxious and then have a repertoire of tools to fall back on to overcome that anxiety so she can “fit in” to our social norms as best as she POSSIBLY can.  I don’t think that is expecting too much for her.  In fact, I think it is being a responsible parent who is doing what a parent should do.  Our job as parents is to prepare our children to be independent adults who are capable of holding a job, having healthy relationships, and managing their affairs (and I don’t mean relational affairs!)

My Story

My Story

Many of my friends have been asking….what happened?  Maggie looks so normal.  Some have even added, have you lost your mind?  All teenagers are difficult and all children go through what you are dealing with.  Teenagers are lazy, teenagers are emotional, teenagers are crazy!  Don’t you think you are expecting too much from her?  Can’t you accept her the way she  is and stop expecting her to be what you want her to be?  OK, OK….Ok….I am going to get this down in print for the first time ever.  Not that anyone could ever appreciate what we have lived over the years.  It’s a doozy of a story.

First, people have always told me I should write a book about my family and my experiences but I have never been able to sit long enough to get the words out (can you say ADHD?) and I am NOT a clever writer like some people I know (Melissa, Britty!-jealous!!).  I am just a tell-it-like-it-is kinda gal!  SO, in the interest of just getting it down….I will do my best to write eloquently.  Just like I have done my best (but most certainly not perfectly) with raising my children…I will most assuredly not be able to write perfectly either.  However, what IS perfect?

I am going to go out on a limb here….I don’t have the kind of faith that two of my beautiful friends , Julie & Melissa, have.  MY family didn’t raise me attending church every weekend (though, don’t get me wrong…I did attend and when I did, I loved it!).  In fact (and I know I am digressing a bit here but there IS a point)…when I lived in Europe my mother was so turned off by the catholic churches and their ostentatiousness and the money the poor people were guilted into giving to the church “so Bishops and Popes could live high on the hog”….that she turned away from God and became an Atheist.  I have had MANY trials in my life and turning it over to God would have certainly helped me through those times.  I have always looked at deeply faithful people (the ones like Melissa and Julie) who have such deep and beautiful faith and love that pours out of every pore-- and wished I had what they have.  I attend church.  I sing in the choir (AND I LOVE IT!).  I believe in the power of prayer (I read studies in Nursing school about it).  I believe in Godly moments.  I see others going through tough times handling things with such grace because of their faith…But something tugs me away from having COMPLETE faith that God is helping me through tough times (I have had my share!) or helping me make decisions.  It’s kinda like how can you believe in God….if there is no Santa Claus, tooth fairy, or Easter Bunny?  But I see God in so many things—the sunset, the view from the top of a mountain, the crystal white snow in the Colorado Mountains, etc (you get it).  AND I see Him in so MANY of my friends.  Lately I have become involved in a special needs mom’s group (MacGyver moms) and I have never felt so much love and support EVER.  The lessons Kirk is giving us on a monthly basis have really touched me deeply.  I wish I had had this group all my motherhood.  I think by now I would have been a more evolved Christian.  I love the teachings of the Bible, I love listening to sermons, but in no way could I ever quote ONE scripture.  Heck, I don’t even know one book from the other.  I don’t even know how Jona got into the whale!  I have never read the bible…because I have a reading and comprehension disability.  It’s difficult for me to read a baby book!  J  Anyway….over the years I have wanted that faith and that connection to God.  This week I sent my daughter off to the wilderness.  The only thing helping me was seeing God holding her in His arms because I can’t.  The only thing letting me see the light was seeing her walking along side angels like my beautiful friend Julie told me.  The only thing getting me through those GUT wrenching visuals of what she might be doing or thinking…is that there IS a God telling her that he loves her because I can’t.  I miss her more than I thought I would.  I started crying my eyes out during a double baptism this weekend because Steve said to the congregation….those children aren’t the parents’ children…they are children of God.  OH GOD….I pray you are taking care of your child and helping her get through this.  Please tell her I love her!!!!

I wish I could leave this on a funny note like Melissa….but again…I wasn’t given the gift of writing.  I have OTHER incredible gifts.  And, my close friends know what they are!

Love,

Laura