Greatest Hits Series featuring my own daughter with #Aspergers

As I began looking for the top posts (ones with the most page "hits"), I smiled when I saw my own daughter's up there in the Top 5. I'm so proud of her! So, for those who haven't met her, Here's Macey!

My life with Asperger Syndrome...

Do you ever feel different than everyone else?
 I'm sure you do, I'm  different too. 
 I have Asperger Syndrome. I think
 differently than others, when people  talk or
 whenever I'm reading something I always think in pictures, I don't 
 have to try and picture things in my mind, it just comes naturally.


That's why whenever my family talks to me they usually have to explain
 what  their saying to me. For example about a month ago my mom  
said to  me "I'm so busy I wish I could be cut into three pieces" and I
  just looked at her and said "What?!?" Having asperger Syndrome is 
good in some ways but there are also alot of things that are not good,
 and that I have to get help with due to me having Asperger  Syndrome.

People who have Asperger Syndrome have anger issues and get ticked
off VERY easy by others, it's not that we want or try to be mean,we truly
can't help it. Whenever I get mad at my older sister, I would normally
scream at her or throw something at her; my mother said that instead
of treating others with such behavior I need to tell them what they did
wrong, and why I didn't like it. The problem with me is I can't stand
when someone tells me what to do, and whenever I do something
wrong I'm usually very defensive, I've been seeing a counselor who
 helps those with Asperger Syndrome, his name is Charlie. I'm
learning how let my anger settle down alot and things I can do to
 help, It's not like count to ten and take deep breaths, it's I need
 to be in a room alone where I cannot be bothered at all by anyone,
sometimes I just need a brake from people, most of the time they
don't even do anything wrong I just get irritated by almost anything
 and it's not even funny. I can't stand when somebody constantly
 pokes me or taps my shoulder it makes me want to scream at
 them and say get your hand off me before I bite it off! I'm not
 trying to be funny while I tell you what I have to deal with, I truly
 hate having Asperger Syndrome. I get in trouble constantly and
 I normally have no clue what I did that was so bad/wrong, see
 that's the thing with Asperger's, I think differently than others
and I have seriously bad anger issues. I've matured alot in the
 past few years, but when I was younger, my family had no clue
 what Asperger Syndrome was and I'd be grounded almost every
 month. Now that I'm almost fifteen, you'd think my punishments
 would be much harsher, well think again I already have to deal
 with Asperger Syndrome for the rest of my life, and my mom
 understands, so she give me punishments that will not hurt me,
 but help me.

Since I have Asperger Syndrome I'm not really allowed to be eating
gluten  foods like wheat products because gluten foods, or foods
with gluten  in them make the disorder I have alot worse than it is already,
but the good news is, I can eat healthier because I'm not eating pizza,
white bread, or biscuits. Although I eat some wheat products I don't
eat alot and I rarely ever eat any at all.

The amazing thing about having Asperger Syndrome is, most people
who create such amazing things have Asperger Syndrome, I'm not
 lying but the world would be extremely boring if there were no
people with Asperger Syndrome. The man who created Facebook
 has Asperger Syndrome, and Temple Grandin who  is the most
 famous person with Autism created a machine for cows to go into
 when they get turned into yummy hamburgers. (Asperger Syndrome
 is form of Autism).

People who have Asperger Syndrome usually have something they
love to do more than anything else, it's something that calms you
down and just relaxes you, in my case I have two things, I love to
 sing and swing. I can be as mad or as sad as ever and if I do
 either one of these things all the feelings just vanish and it brings
happyness to me.

People who have Asperger Syndrome are extremely sensitive to
things not just emotionally but mainly physically, and their
imagination is so strong you never can tell if your dreaming
or if something is real, for example my old house was never
 haunted and isn't haunted now, but whenever I was alone,
and only when I was alone, I would hear my name and a
 tapping on my shoulder, it scared me to death cause I truly
 couldn't tell if it was real or not. I'm also very picky with
 texture I can't stand to wear tight clothes or anything ichy
 no matter how cute I thought it was. I also hate wearing pajama
 pants to sleep because I tend to move around ALOT in my sleep
 and I hate when my pajama pants go up to my thighs, so I sleep
 with pajama shorts instead, even in the cold winter. Since i'm so
 picky with texture, I can't stand quite alot of foods, I will not eat
anything sea food except some fish (Tilapia, Tuna, and Salmon)
and I dont really like the texture of that either. I won't eat anything
 if someone else touched it, even if it was my mom or my best friend.
 It's not anyone's fault that I refuse to eat after them that's just the
way Asperger Syndrome people are. About a month ago my little
 brother and his friend were over at our new house and he wouldn't
stop playing in my spaghetti, so I yelled at him, which is way nicer
 than what I wanted to do to him. Since I'm so sensitive to things,
it's impossible for me to swallow pills, I've tryed a million times and
it just won't go down.

This is the life of having Asperger Syndrome. My anger issues,
my sensitivity, my way of calming down, what I can and cannot do,
 and just everything that I have to deal with is not only hard for me
 to deal with but also my family. The best thing to have around a
person with Asperger Syndrome is patience. :)

Our Pearl Story (Part 6) #HopeChangesEverything #BlogParty2011

Thank you for sharing this journey with me and my Macey Girl. :-)

After leaving the meeting, I was tempted to just go home and have a good cry while researching what I could find about Asperger's Syndrome, but went ahead to work out. I figured maybe the exercise would help me balance the mental and emotional stress, and better enable me to hear the Father's voice over the noise of my own confusion and uncertainty. I am so glad I walked into that gym.

As soon as I got there, I bumped into a friend. As soon as she asked me "how are you?" the dam burst. Well, almost. I held it together enough to not drawn attention to myself, but began to tell her what had just happened at the IEP meeting. I said, "I'm not sure if you've ever heard of this, it has a strange name, but I think my daughter might have Asperger's Syndrome." I couldn't believe what she said next. "Oh yeah, I know all about it. In fact my mom has worked with kids with Asperger's Syndrome for years. I'm sure she'd love to talk with you." And right there, the journey to understanding my child better truly began.

From that conversation, God continued to lead me to people who either work with those who have Asperger's, to those who have Asperger's themselves. It was like they came out of hiding and into my life! I began devouring books and blogs and everything I could find so that I could learn everything I could learn. One thing led to another and we were able to find a psychologist to work with us, do some additional testing, and discover her diagnosis. I learned that girls with Asperger's are often not diagnosed until adolescence and even adulthood because it manifests itself so differently in girls than in boys.

As I began to understand better, I was beginning to get to know my Macey so much better. This has been SUCH a gift to our whole family! We have learned not to take things she says or does so personally. We realize she isn't being difficult when she says, "Turn that down, it hurts my ears," or when she insists on wearing comfortable clothes. It hasn't made life completely easy--not at all--but it has increased our peace and our appreciation for the unique ways the Creator chooses to fashion each and every one of us.

In June, Macey and I were headed somewhere by ourselves. Anyone who knows her knows that one of her major requests from me is that she have alone time with just me. She's been this way since she was very young, and continues to want this still. So, as we were riding along together, talking, she told me that she had done a project at school on the meaning of her name. She said she had a really hard time finding the meaning for "Macey." She asked me if I knew what it meant.

I can't begin to describe to you how significant that question was or the moments that followed. You see, Macey wasn't my first choice for her name. It was her dad's choice. I wasn't crazy about it at first, but it grew on me once I learned that one of the meanings for this name is "Pearl." Her dad was a jeweler at the time, and I thought that was pretty. On that warm day, driving along the road, talking to Macey, I realized that this was God's chosen name for Macey.

I asked her if she knew how pearls develop. When she said no, I began to tell her. "Macey, pearls don't just happen. Pearls take a lot of time--years even, for the most precious ones. A pearl develops in the secret, dark place inside of an oyster, and only when that oyster has had something outside of it--an irritation of some kind--enter into it. As that oyster just does what it was created to do--respond to the irritation--a coating is created over that piece of sand or whatever got into it, and over time, a beautiful, valuable pearl is created." She liked that story. And then it hit me. And I said, "Macey, I believe that God wanted you to know that He is writing your pearl story. I believe that long ago, He knew you were going to deal with more irritations than the rest of us. I think He wanted your name to be significant so that you would remember that every time you deal with something that bothers or upsets you--something that other people don't seem to be affected by--God is developing a beautiful, rare, priceless and wonderful pearl right inside of you. And maybe people don't see it right now, but one day, in His perfect timing, people are going to get to see that Pearl that He is creating in you right now."

She loved that. I loved that. We were both in tears. My child who thinks in pictures-- because her God didn't create her broken, just different, and designed her to think in pictures--was given a name that had a symbol attached to it: a Pearl.

Later that same day I gave her a simple little necklace with a pearl inside the pendant. It's kind of hidden inside, so you have to know it's there to see it. I gave it to her and told her she could wear it or hang it up somewhere or put it where she could be reminded that her Heavenly Father is writing her pearl story each and every day.

Later that day, I saw her wearing it. And I've rarely seen her without it since.

Soon after, something happened that really upset her. She was confused by someone's tone and facial expression. We talked about it for a few minutes and then she said, "Do you think this is part of my pearl story?" And I was so happy to say, "Absolutely, sweet girl, I do."

It's only been about two months since I used the term Asperger's Syndrome with Macey. I just felt that nudge of the Spirit that said, "It's time." I drew a picture of the Autism spectrum and explained some of the things I had learned. I wasn't sure how she would respond, but I wanted her to hear it from me, and not from anyone else. I knew, no matter how she responded, she would take it from me better than anyone else. It's just the way things are between us. Her response melted my heart. She said, "You mean that my brain doesn't work like other people's brains, and that it has some parts that might seem broken, but that God could use this in a really good way?" I wanted to jump up and do a happy dance. She got it. She doesn't have a defective or broken brain, her brain just works differently than mine does. Who knows, perhaps mine is the one that has the broken parts.

****************************************************************
As we continue this journey, I'm confident I'll share more about what I learn from my children, and how God uses Asperger's Syndrome specifically, in our family's journey. God seems to use my children more than any other relationship to help me embrace the truth that He really does love us all..."Equally, but uniquely," as my friend John Lynch has so eloquently said.

Thank you for your patience over this past week and I've shared just a glimpse into what this past year has held for me. I covet your prayers for wisdom in leading, not only a ministry to women, but in ministry first and foremost right here at home. Thank you!

****************************************************************
These "Pearl Story" posts were originally posted about a year ago. Since then, God has walked with us through another dark valley. He continues to bring healing and wholeness to our hearts as He reveals His gracious nature and trustworthy character to us --even through those experiences we wouldn't wish on any other soul. God is good. As a friend of mine says, "Life is hard. God is good. Don't confuse the two." Even when we don't understand His ways, we can fully trust His character.

Isn't she beautiful? :-)

My Life with Asperger's Syndrome, by Macey Pound

My life with Asperger Syndrome...

Do you ever feel different than everyone else? I'm sure you do, I'm
 different too.
 I have Asperger Syndrome. I think differently than others, when people
 talk or whenever I'm reading something I always think in pictures, I
don't  have to try and picture things in my mind, it just comes naturally.
That's why whenever my family talks to me they usually have to explain
 what  their saying to me. For example about a month ago my mom
 said to  me "I'm so busy I wish I could be cut into three pieces" and I
 just looked at her and said "What?!?" Having asperger Syndrome is
 good in some ways but there are also alot of things that are not
good, and that I have to get help with due to me having Asperger
 Syndrome.

People who have Asperger Syndrome have anger issues and get ticked
off VERY easy by others, it's not that we want or try to be mean,we truly
can't help it. Whenever I get mad at my older sister, I would normally
scream at her or throw something at her; my mother said that instead
of treating others with such behavior I need to tell them what they did
wrong, and why I didn't like it. The problem with me is I can't stand
when someone tells me what to do, and whenever I do something
wrong I'm usually very defensive, I've been seeing a counselor who
 helps those with Asperger Syndrome, his name is Charlie. I'm
learning how let my anger settle down alot and things I can do to
 help, It's not like count to ten and take deep breaths, it's I need
 to be in a room alone where I cannot be bothered at all by anyone,
sometimes I just need a brake from people, most of the time they
don't even do anything wrong I just get irritated by almost anything
 and it's not even funny. I can't stand when somebody constantly
 pokes me or taps my shoulder it makes me want to scream at
 them and say get your hand off me before I bite it off! I'm not
 trying to be funny while I tell you what I have to deal with, I truly
 hate having Asperger Syndrome. I get in trouble constantly and
 I normally have no clue what I did that was so bad/wrong, see
 that's the thing with Asperger's, I think differently than others
and I have seriously bad anger issues. I've matured alot in the
 past few years, but when I was younger, my family had no clue
 what Asperger Syndrome was and I'd be grounded almost every
 month. Now that I'm almost fifteen, you'd think my punishments
 would be much harsher, well think again I already have to deal
 with Asperger Syndrome for the rest of my life, and my mom
 understands, so she give me punishments that will not hurt me,
 but help me.

Since I have Asperger Syndrome I'm not really allowed to be eating
gluten  foods like wheat products because gluten foods, or foods
with gluten  in them make the disorder I have alot worse than it is already,
but the good news is, I can eat healthier because I'm not eating pizza,
white bread, or biscuits. Although I eat some wheat products I don't
eat alot and I rarely ever eat any at all.

The amazing thing about having Asperger Syndrome is, most people
who create such amazing things have Asperger Syndrome, I'm not
 lying but the world would be extremely boring if there were no
people with Asperger Syndrome. The man who created Facebook
 has Asperger Syndrome, and Temple Grandin who  is the most
 famous person with Autism created a machine for cows to go into
 when they get turned into yummy hamburgers. (Asperger Syndrome
 is form of Autism).

People who have Asperger Syndrome usually have something they
love to do more than anything else, it's something that calms you
down and just relaxes you, in my case I have two things, I love to
 sing and swing. I can be as mad or as sad as ever and if I do
 either one of these things all the feelings just vanish and it brings
happyness to me.

People who have Asperger Syndrome are extremely sensitive to
things not just emotionally but mainly physically, and their
imagination is so strong you never can tell if your dreaming
or if something is real, for example my old house was never
 haunted and isn't haunted now, but whenever I was alone,
and only when I was alone, I would hear my name and a
 tapping on my shoulder, it scared me to death cause I truly
 couldn't tell if it was real or not. I'm also very picky with
 texture I can't stand to wear tight clothes or anything ichy
 no matter how cute I thought it was. I also hate wearing pajama
 pants to sleep because I tend to move around ALOT in my sleep
 and I hate when my pajama pants go up to my thighs, so I sleep
 with pajama shorts instead, even in the cold winter. Since i'm so
 picky with texture, I can't stand quite alot of foods, I will not eat
anything sea food except some fish (Tilapia, Tuna, and Salmon)
and I dont really like the texture of that either. I won't eat anything
 if someone else touched it, even if it was my mom or my best friend.
 It's not anyone's fault that I refuse to eat after them that's just the
way Asperger Syndrome people are. About a month ago my little
 brother and his friend were over at our new house and he wouldn't
stop playing in my spaghetti, so I yelled at him, which is way nicer
 than what I wanted to do to him. Since I'm so sensitive to things,
it's impossible for me to swallow pills, I've tryed a million times and
it just won't go down.

This is the life of having Asperger Syndrome. My anger issues,
my sensitivity, my way of calming down, what I can and cannot do,
 and just everything that I have to deal with is not only hard for me
 to deal with but also my family. The best thing to have around a
person with Asperger Syndrome is patience. :)

Pears...(Part 5)

Well, we're almost there...just a couple of posts to go...but even these are still just the beginning for those of us walking this journey with our Macey-girl.

After the whole nightmarish episode with DFACS, I spoke with Macey about how big of a deal this was. She had no idea. She was just telling her friend about her "food shelf," then the friend told a teacher who thought it sounded awful. The teacher told the counselor. The counselor called DFACS. I still would have appreciated a call to us first--this would have really cleared things up; but I'm thankful that we were able to get it all dealt with in a timely and fairly non-traumatic way.

I asked Macey to think about how she felt about what had happened and she said, "You know when you're washing dishes and you have that one dish that doesn't want to get clean; and no matter how hard you scrub, there's this place on it that won't scrub off?" I said, "yes," and she replied, "I feel like that dirty dish."

For 13 years I was getting to know Macey to the best of my ability, but I really didn't know why she acted the way she did or why things would anger her so much or why she could experience the exact same situation as the rest of us in the family, but be affected by it and remember it completely differently than the rest of us. Again, I was praying for God to redeem her filter so she wouldn't have a wrong view of the world, of God, of her family and friends, or of herself.

Around Macey's 13th birthday, my sister sent me an email sending me to a link about a form of Autism called "Asperger's Syndrome." I can't believe I had never heard of it before then. With all the info out there and as much as I study and read, I can only surmise that for some reason, God withheld that information until He knew we were ready to receive it. Up to that point, I had always thought I was just dealing with a strong-willed child who also had a hearing impairment--which would explain some of what life was like with Macey, but still did not give us the clearest picture.

I began to research Asperger's Syndrome, which also typically includes Sensory Perception Disorder, and as I researched it, some of it seemed to fit Macey, but not all of it. I talked to one of Macey's teachers who insisted she knew all about Asperger's and that it was her belief that Macey did not have this. So, I shelfed the topic, and went on with life--struggling with Macey's perceptions, reactions and confusing behavior...until this past spring.

I was meeting with Macey's teachers for her annual IEP (Individualized Education Plan), which she has had since preschool due to her hearing impairment. As the teachers, counselors, and I discussed Macey's struggles and the desire we all had to help her to the best of our abilities, we agreed to do some more testing for possible learning disabilities.

As I left that meeting, I headed to the gym, and fell apart in the car. I wept for my child who I wanted (and want) so desperately to be equipped to love her life and to find success in relationships. I teach my children that if you can be successful in relationships, you'll be successful in life. But if you never learn to be successful in relationships, you'll never be successful in life. I'm so far less concerned with the grades on a report card than I am with how my children learn to relate to other people. And, Macey was struggling with both.

I had not thought about Autism or Asperger's Syndrome in months. And, honestly, out of nowhere, the terms came to my mind. I began on that drive to the gym to talk to God about this possibility, and asked that He show me if this is truly what we were dealing with. After all, He created her, so He would know, right? :)

Stay tuned....more tomorrow...

(Thank you for reading and sharing this journey!)