Today, Friday, my sweet German boy's family is in town. I am hostessing them. In Scottsdale. My city. My state. My country. Plans changed like the wind all day. We were supposed to go out to dinner as two families...but that did not happen. We ended up in Scottsdale OLD town at 5 with a very hungry crowd (after they spent the afternoon getting their RV). We sat down to eat at Culinary Dropout and they all ordered huge meals. Nothing I could do to stop them. I ordered something light....so we could continue with our plan of going to CPK with my kids and Bill. At 7pm I called home and asked Bill to fix pizza for the kids...because we had changed plans. NO CPK tonight. Whah whah. Lexi was disappointed, but she was good and took it well (according to her texting me!). They had Pizza, we walked around Fashion Square and then arrived home at 8:30 just in time to meet the AYA rep Sherry. She had to do an exit interview with Michi. When I arrived home.....the dishes from Bill's dinner with the kids were piled next to the sink...as if....it. is. my. job. to. clean. up! Sheesh! SO, simple question: Why is it that I make dinner so MANY nights, almost every night....and still have to clean up after myself? Just asking...... WOW. It really hurts!
Saturday, May 26, 2012
Monday, May 14, 2012
Mother's Day
What is Mother’s
day all about? Growing up we celebrated
my mother all day, pampered her, did the dishes so she wouldn’t have to, made
dinner or went out to dinner so she didn’t have to cook....we showered her with
gifts. This included my father. My father was taught as a boy to respect
mothers. His mother was an amazing woman
and my father knew that in spades. SO,
when he married my mom and started having kids, he knew that she was the one
tirelessly and thanklessly raising his kids to be amazing people. He respected my mom with undying love and
when Mother’s Day rolled around...he made sure he celebrated her. He ALWAYS got her a present of some sort....a
card...some flowers....and made sure his kids helped out...afterall, my mom was
the mother of his children! This is NOT
the case with my husband. He doesn’t get
me a thing from himself. Yes, he makes
sure the kids pick out something to give me...but he gives me nothing to show
me how much he respects me as the mother of his children. He says (excuse) that I am not his
mother....but he truly misses the point!
I don’t need much.....even a card would be nice. A small token of appreciation (an added charm
to my charm bracelet would be so simple, not expensive, but such a heartwarming
gift to me)...to show ME how much he appreciates my tireless and thankless
energy....raising his kids. Last night
we went out to dinner with his mother (who was so alert last night...it made me
so happy!) and the kids. We went to our
favorite family restaurant, California Pizza Kitchen. It was great.
We went early (which was not my first choice)...but it was nice to get
home by 7 and have a couple of hours in a quiet house before putting the kids
to bed. Bill was asleep on the couch by
8. I was stuck cleaning up the dishes
from breakfast, making lunches, getting breakfast ready for the morning, laying
out medicines, etc. THEN, I was left to
put the kids to bed without support from my husband. ON MOTHER’S DAY! Our kids are to the point when putting them
to bed is not tough....but, Nicolas does still need help brushing his teeth,
making sure he goes to the bathroom, and taking his meds. Sure would have been nice to relax on
mother’s day...and don’t cha know on Father’s day Bill will expect it! While I was putting Nicolas to bed, Bill
arose from the couch and I assumed (incorrectly) that he went upstairs to put
Lexi to bed.....well...that was a bad assumption. Because when I went into my room at 11:30 to
go to bed, Lexi was still up in our bed....watching TV!!!!!!!!!!!!! WOW! Getting
Lexi up this morning was such a treat.....she struggled getting out of
bed!!! I was so upset....and it ended my
day with such disappointment. I really
find it difficult to kill ‘em with kindness....and be nice to Bill these
days. I wish I had more grace and
patience....I wish I could shower him with love so he could MAYBE find it in
his heart to respect me and enjoy life with me.
I know it is partly my problem...because I struggle wanting to talk to
him and treat him nicely. I am so short
with him...I am so frustrated with him....and I know that he is frustrated with
me because it is so difficult for me to be nice to him. It is a two-way street for sure, but 2 wrongs
DON’T make a right....and somebody has to rise to the occasion and apparently
it will NOT be Bill!
Sad MOM..
It's NEVER easy....
It’s never easy! SO, let go of those pre-conceived notions. So many of us with special needs kids
struggle with everyday challenges....school IEPs, how to involve our children
in everyday activities...neighborhood friends, birthday parties (really? In Nicolas’ 14 years he has NEVER been
invited to ONE! And Maggie does better one on one-- gee how conducive is that
to a PARTY?), what it will look like when you go to a friend’s house for a BBQ
or just go to the zoo or the children’s museum.
It is never predictable. It is
ALWAYS NEW. This is something families/friends
with “typical” kids will NEVER understand.
And, what is even more difficult is most of our friends will never be
able to sympathize with or grasp the concept of how difficult it is to just go
to the grocery store let alone try to enjoy a family outing to the zoo or a
water park with our children. The
park? Oh, yeah, that sounds like fun,
NOT necessarily with a special needs kid!
The vigilance, the watch, the fear that our child will, either; wander
off, freak out another child, or hit someone is constant. SO...what we special
needs parents need to do, is adapt and find that new “normal”. Not expect anything. Not want for anything you dreamed of. AND, most of all....not compare yourself to
anyone! This is NOT easy...believe
me. I have been doing this for 14 years
now...and I have to say...it’s easiER....but not EASY. When a friend has a
child diagnosed with cancer, nowadays more often than not, a curable
disease....it is almost enviable (shock factor!). What my children have is NOT curable. What we deal with is NOT curable. The blood draws, the fear, the
hospitalizations, the wilderness programs....they don’t cure....they just help
us figure out what to do next. Maggie is
brilliant but not capable of having normal relationships or understanding how
she impacts others. She is several years
behind figuring out how to engage in social activities. She has a LOT of catch up to do. It is very painful to look around and see
other girls her age who are poised, well coifed, and dating or going to a
prom. It is really difficult to keep
from wishing and wanting what my friends have with their beautiful
girls...graduating with honors and going off to the college of their
dreams. Maggie is doing well in this
Wilderness program....but needs so much more than what this program can do for
her. She needs the consistency of
trained professionals catching her in teachable moments and working with her to
improve her reactions. She needs
frequent interaction with peers to understand how she impacts others and to
understand how to effectively react to other’s suggestions and criticisms. Bottom line, she needs tools in her toolbox
in order to be a successful adult living in our complex social world. So here we are...in the next phase of her
life....wishing there were a way out of this decision but knowing that it is
the best possible chance for her to learn skills to be a more effective social
being in this very complex world we live in....we have had to let go of our vision of what we wanted
Maggie’s year to look like. We need to find
joy in simple pleasures...to look at the pictures of her and be happy for what
she is experiencing. We are happy that
Maggie is away from the complicated social pressures of FB, Twitter, and
Instagram. We are learning to allow
others to teach her what we desperately want her to learn. We are living each day thanking God that we
have resources and friends who lift us up and support us during this very
stressful time. We are working on not getting
hung up on the fact that we should be able to handle this on our own. We are breathing a lot and trying really hard
to work it out in our minds that it is best for all of us to let Maggie go on
this journey without us. Letting her go
is a GIFT to her (and to us)....but not one without regret or sadness. I have always tried, as a mother of special
needs kids, to find that balance of when to include the special needs child (as
a benefit to you and the child) and when it is not a benefit. Bringing them along, is not always the right
thing to do. We have reached that point
with Maggie.....she was not making progress in our home. Bringing her along was not working for her or
us. SO, now....as we move forward to the
next phase...we have to accept the new normal.
BUT, the new normal is not always easy to accept!
Thank you all for the
letters to our baby girl. The letters
are lifting her up and helping her!
BELIEVE me. We leave this
Wednesday evening to fly to Salt Lake so we can spend Thursday from 8:30-5 and
Friday from 8:30 to 5 with her. I can’t
begin to describe the excitement I feel in my heart to see my beautiful
Maggie. Again...if you have something
for me to give to her....let me know.
Monday, May 7, 2012
I wish I had written this!
Welcome to Holland
By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Wednesday, April 25, 2012
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 ~
Saturday, April 14, 2012
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
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