Jesus snored. Really?!?

       Well, the Christmas music is playing non-stop at our house! We love the cozy feelings of family, friendships and the holidays (minus the stress)! I've certainly loved Christmas all my life and heard many versions of the holiday songs and carols.
       BUT, I was reminded of a Rachel "observation", from last year. We were listening to the "Do you hear what I hear?" song. I was just singing away... After the song was over, Rachel said "Jesus must have snored loudly"....Thinking, thinking....thinking some more...Then I asked why she said that? She reminded me, in the song "Do you hear what I hear? A child, a child, sleeping in the night..."! That's right, the only way we could hear Jesus sleep, was if He was snoring...loudly!
         Asperger's....they do have a point! Thought you might enjoy her observation!

You've gotta laugh!

      Many times, tooth brushing time is a struggle at our house! I think I have alluded to that before. But to refresh those "charming" memories, with sensory integration problems, it can be a nightmare. The gag reflex, the smell, the touch... you get the picture.. not fun. She sometimes gags just walking into the bathroom, before even touching her toothbrush. I must say, she does not actually throw up much, now! Woo Hoo, that has been such an improvement to the start of our days!
     OK, back to the topic...(it's just nice to appreciate the successes at our house)! So, this morning, Rachel was getting ready to brush & Rosebug (our dog) did something silly causing Rachel to laugh. I then started laughing, which caused Rachel to do her "fake" laugh. Of course that only made me laugh harder, because I was remembering back when... Rachel is 10, now, but about a year ago, she suddenly started laughing when she attempted to brush her teeth. I thought it a little odd, but have learned nothing is really odd, living with an Asperger's child!!! This continued for a while & I figured it was better than tears, so didn't think much more about it.
      It finally got to be time to head to the dentist again (now THAT, is a real nightmare!). On the way, she let me know what a good job she had been doing with her teeth.....She said she had "laughed" almost everytime she brushed...waiting...waiting....(you do a lot of that, trying to figure where their thoughts & words are going), waiting....FINALLY, she announced, "well, the dentist told me it was important to tickle my gums, everytime I brush!".     OH! you guessed it, she "had" to laugh to follow the dentists orders to "tickle" her gums! You've gotta laugh!  ;0)

Black Friday Rachelism

     So, today, we ventured out into the crazy world of Black Friday. I know that's nothing unusual, but, have you ever tried to shop with an Aspie? All we needed was a pair of solid black sneakers for Rachel's school's Honey Bears dance team. They have 3 parades to dance in, coming up in the next couple of weeks. Have you ever tried to find solid black sneakers, with NO logos, etc. for a girl?
     We were trying to avoid the Christmas crazies, seeing as how, Christmas is not really on my radar, yet. Anywho, thought you might enjoy this...Rachel asked if it was Halloween.?....Long pause...I asked why?...She was afraid of the beautifully dressed mannequins at Macy's. So, I waited a few more seconds...and asked why?  "Because someone cut their heads off!".  Yep, that's our Black Friday, but hey, think of all the money we will save, being unable to go in a mall!
    Happy Belated Thanksgiving! We all have so much to be thankful for...a.k.a. our sense of humor and our family & friends! I thank GOD, I am not in this world alone!

Thankful for Good Days/Times

     First, let me apologize for slacking on my blogging...these last few weeks have been particularly trying at our house & at Rachel's school. An Asperger's parent doesn't have the time or "luxury", if you will, to be sick or feel bad. (Which most often means illnesses drag out, due to little or no relief.)
     Rachel's aggression has reared its trying head! She has gotten into some "unacceptable" behavior at school. The difficulty with Aspie's (one of them) is their inability to interpret their peer's intentions, acceptance, feelings... you get the picture. The social ques are just not seen, to put it simply. This has resulted in Rachel getting into a "fight" at school. Needless to say, ughhhh.... It's so difficult to help them realize how other people feel & what other's expect...they have a very different interpretation, than the "norm", socially.
     She happened to have a Dr.'s appointment on Tuesday, which was good timing for us. Unfortunately, her Dr. is relocating, so we get to adjust to a new one...She was somewhat helpful, but gave some honest opinions of our situation. It is frightening thinking of the potential future, but that's where taking life one day/ or even one hour at a time will hopefully continue to help not getting & staying completely overwhelmed. And, there is nothing like prayer and faith. I cannot imagine facing this life without God's love & grace.
      The doctor brought up the subject of those "wonderful" hormones kicking in & basically said to expect things to get more trying. She's only 10 & I know her little body is changing, but yikes!! Worse?
     Asperger's  predominately affects boys. All of the people I know that have children with this diagnosis have sons. I would love to be able to talk to a parent of an Aspie girl. If you know one, please, send them my way, particularly if they have already survived this phase. Anywho... life has not been all bad...she continues having Rachelisms on a daily basis. I will share some with you soon.
   And, next week, her Nana, my mom, is coming to be with Rachel, while I escape to Chicago for a few days. THANK YOU MOM! Did I ever tell you, I have the best Mom & Dad in the world? Well, I just did & I mean that with all my heart. I am so blessed, which also means Rachel is so blessed. I know they will have a wonderful time of sharing. Rachel is sooooooo excited (So am I & thankful!)!!!
     Nana & Papa are an integral part of Rachel's village! Can't wait to have mom here!
   

Rachelism - Gift

     Today has been a difficult day. My good friends' brother died on Thursday, and it has knocked the wind right out of my sails. Ray was like an uncle to Rachel; we loved and adored him. So I've been a little/lot lost in my thoughts and not thinking, in, clearly, Asperger's ways.
      But I was brought back to literal thinking a few minutes ago. Rachel had gotten on the subject of Christmas and family gifts. I explained to her that the last 2 years, the Goodpasture family had drawn names at Thanksgiving for Christmas gifts. Silly, silly, me!
      Rachel disappeared into her bedroom for about two hours. She came out smiling and looked so proud. I asked her what she had been doing, so quietly for so long. She then held out a spiral notebook, filled with the names of everyone in the Goodpasture family, AND their dog's names (Scout, Trooper & Rosebug), "DRAWN" beautifully, for Christmas. Now, how did I not see that coming?
      It did make me smile. The purity of thought and innocence....I'm actually wishing Christmas was that simple. After all, she did spend time and energy, thinking of and creating for those we love so much! It was her creation of love!    ;0)

Priceless Friendship!

       It's said "A picture speaks a thousand words." So in this post, I want to share with you how Rachel views friendship, by way of pictures. 

This is from Rachel's school journal, September 13th of this year, "How to Become a friend". 

(I will go ahead a quote it, in case you have trouble seeing it:
"A good friend is truthful, shares, thoughtful, and stick together.
I did all these things to become Mollie's friend.
You can do it too.
Look at Mollie and me.
Drawing.
That's how you'll look with a friend.")


     Mollie is Rachel's BFF! They have "known each other since birth. Mollie was born 13 days after Rachel. Here is one of their earliest "friend" pictures including another of their friends, Melody.


Sharon with Melody, Me with Rachel & Carrie with Mollie

 Friends make life bearable. Aspies need and want friends, too. Much of the time, it is hard to tell about their actual feelings and interpret their social skills, but one thing I do know, is Rachel adores Mollie! Sometimes it can be a little different to have an Aspie for a friend, but I am thankful Mollie has been there for Rachel. Rachel went to home daycare at Miss Carrie's house. We went to church together. Last year, Mr. Enck (aka Mr. Tim-Mollie's dad) was Rachel's 3rd grade teacher. This year...Rachel is in the same home room, with Mollie! They enjoyed dance classes together with Miss Kristi, for about 6 years.



Rachel & Mollie at Dance Recital  May, 2008

 Friends are priceless. I am thankful for Mollie, her ability to love, as well as her whole family. We love you, all 4! Tim, Carrie, Michael & Mollie, our world is such a better place, because you are in it. These are some important people in the village "raising" Rachel! Thankful for God blessing us with these friendships!

Changes!?!

      Oh, the month of October... supposed to be a fun fall month...at the end of this month, comes "Halloween"...a time for bobbing for apples, hayrides, parties, trick-or-treating dress up fun...eating candy til you're stopped or just can't....
      At our house, it's a little different. Rachel looks forward to dressing up almost all year. That's the part she likes (costumes, as long as there are NO tags, only soft, "non-itchy" fabric, nothing binding...)  But when the big night comes, she FREAKS out. Now, I'm no fan of scary things, by far, but she is TERRIFIED of other people being dressed up, especially any kind of mask, not to mention actually frightening costume OR even decorations. So, we don't get passed a couple of doors before she is screaming & begging to go home.( Jim's been such a good sport & accompanied us several years, making it more fun for me.) The sad thing is, when we get home, she doesn't want to open the door for anyone in a costume.  (although last year, she watched Jim give out candy at his house!?) So we just crash at someone else's house, or come home and keep all the porch lights, etc. off, to keep trick-or-treaters away. I can't imagine how frustrating it is for her to be so excited about getting dressed up & then the reality of not being able to deal with the festivities.

   
This photo is from 4 years ago...once we made it home, she was happy being dressed up with Rosebug!

        So now, I pretty much just plan on comfortable costumes for her & the dog each year & try to not expect anything other than a dress-up night. After all, the holiday is supposed to be fun, NOT torture for the children OR parent! Changing my expectations has made a big difference in both of our happiness factors. Change is not bad, just different. I remind myself, of that, MANY times a day! I know change is easiER for me, but unbearable for those with Asperger's.
       The fears were brought to my attention in a big way, one day 2 weeks ago. We were at Michael's, shopping for things to decorate her hat for "Race for the Cure", coming up this weekend. I had not been thinking about Halloween decorations, etc. before entering the store. We picked up some pink paint for her hat & made it halfway through the store, BUT one of those movement sensored decorations went off. It was a gauzy-ghost creature moving, with eerie sounds... Rachel SHOT like a ROCKET, screaming down the aisle. I set the paint down & went to find her. NO Rachel. Pretty soon, several others were helping me look for her. I finally thought to check outside...that's right, she had screamed & run her way right out of the store. Needless to say, I had to go back for the paint another day without her. And by-the-way, have you noticed EVERY store this time of year has these types of "decorations"? I cannot go into the pharmacy, grocery, large chains, restaurants....at all with her, this month. But, November will be here before we know it.
      Change is NOT an option (for the most part) for Aspies, but a requirement for family and friends of those with Asperger's.

Part Hound?

      So, this morning we were heading out LPGA Blvd, west, toward Rachel's school. It suddenly looked EXTREMELY foggy.... or was it smokey?... it soon became evident it was smoke. After a bout of coughing and traveling a little further... I said "I wonder what is burning?". To which Rachel said "it smells like someone cooked their bacon too much". If it had ended there, I would not have gotten a big laugh. Next, she says: "I am positive it's coming from this side (she pointed right).....or else it's coming from that side (pointing left)." This is so typical. After we both laughed (she was laughing at me, laughing at her observation & prediction) I asked her why she said both places, to which she answered her obvious... "I have 2 nostrils, you know?"... By that point, her eyes were "leaking", as she calls tearing up, from laughing. (By the way, the smoke was actually blowing from the right.)
     This brought to mind one of her other "obvious" declarations. We were in the car one day and Rachel said she smelled water. We were quite puzzled, but couldn't resist asking what water smells like. She thought and thought and finally said..."it smells like ice". True enough. This was before she knew that frozen water is ice. This is just an example of how keen her senses are.   ;0)
      Sensory integration problems are common in Asperger's. When she was younger, and occasionally now, she would spit out, or even throw-up if there was/is a seed in her strawberry yogurt. She still has problems with brushing her teeth, as her gag reflex is so sensitive. There are times, when she gags just walking into the bathroom, before attempting to brush her teeth. For a long time, she would throw-up almost every time we attempted to brush. She has made some progress in that area, but still has problems with it. Unfortunately, it's not something that can be skipped.
     I write all this just to let you know how sensitive these children can be... whether it's to smell, taste, touch, sound, sight/light, temperature... I wish I had known what I know now, when she was much younger. When she was a baby & until recently, she would scream, like she was being scalded, every time she got a bath. We finally noticed she did better when the water was at room temperature or cooler. She is the same about her food, preferring room temperature to warm. I can't imagine what it's like to be so affected by everything in our world. And with more limited communication skills, the frustration of it all is pretty easy to understand.
     So, if you are in need of someone with a good "sniffer", don't bother calling for a hound, just call a Rachel!

Good News/Bad News

       If you think you know a lot.... spend some time with an Aspie. We know very little, but they are happy to fill in our gaps... even gaps we didn't know we had. I was "enlightened" over the weekend, while enjoying some football with Rachel.
       We were watching (had on) the Alabama/ Arkansas football game Saturday. Rachel asked if Bama was playing the "boats"... I said they are playing Arkansas...she said "arks are boats"! Asperger moment.
       Later, she informed me there are 2 kinds of "refs". Silly, silly me... I assumed she was thinking a football ref, a basketball ref, etc. But of course, that would be our logic...I questioned what her 2 refs were... "Obviously there's the kind that wear black and white and whistle, AND the kind that float on water...like in the pool". (ref/raft... all the same!?!)
    There, I just shared my new knowledge. And maybe I'm trying to think of the positives, instead of the reality of her student teacher walking her to my car, yesterday. I could tell from both of their faces that something was not right. Apparently, they had to physically remove the scissors from her during art class. She refused to stop & turn them in at the end of class. To us, she's not following the rules, but she sees it that she had not finished her job (art project).  Anyway... the teacher said "she (Rachel) got really upset & caused quite the scene, before & after they took her scissors".
    Well, it's another day... many opportunities for???? who knows????

Honest Prayerful Song- please listen!

     I'm still crying after listening to this honest song. Please take a few minutes and listen to the words. It was as if the writer read my mind. Just click on the link and it should come up. Don't forget your hankie, especially if you are a parent of a special child or love one (child &/or parent). May God continue giving us courage, energy, wisdom & close friendships. It can be a very lonely world for the caregivers...
 

Leisa A. Hammett : Autism/Disability

leisahammett.typepad.com

 

Thank you to the songwriter, as well as the brave friend that shared her soul to the writer! You speak/sing for so many!

Aunt Rachel

     Another week has come and gone, with a couple of treasures to share with you...Birthdays are different for Asperger's. Rachel looks forward to hers, as much as anybody, BUT....her concept of time is almost nonexistant, so far as measuring it.
      About 2 1/2 years ago, I asked her if she thought it would be fun to be an aunt. Emily and Sean had shared with me their exciting news of a baby on the way. Rachel's other sisters were very excited, but Rachel was VERY hesitant. I explained to her that Emily & Sean were going to have a baby, so I would become a grandmother (now, happily known as "YaYa"). That was somewhat confusing, but she was adamant about not wanting to be an aunt. After further conversation, and a couple of days of processing allowed and careful thought, I asked her again why she did  not want to be an aunt. She said she was ok being a girl, but didn't think she ever wanted to be a "bug". That's right, she thought she was going to turn into an ant, because Emily was having a baby. Once she understood that "Aunt" is just a title, she was completely on board and excited about Jakson's arrival!
      As a matter of fact, she was so excited, I almost regretted sharing the news with her. She continually asked me, if he was here yet. So, since her birthday is September 10th, I thought it might help her to know he was not due until after her birthday. That seemed to satisfy her, until....September 11th. I went in to get her up and she wanted to see Jakson. I told her he was not yet here and she was devastated, that I had "lied and promised he would be here after her birthday"...which of course meant one minute after midnight to her.  We had another anxiety filled week, before precious Jakson came into our world on September 18, 2008.

As you can see, Rachel is a proud Aunt to her beloved Jakson. The pix was taken in July, 2010.

We all adore him! Happy Birthday precious Jakson! Two is going to be great!

Happy 10th Birthday!

     Almost exactly 10 years ago, I held Rachel for the first time. She was born at 7:00 am. It is now 6:55, as I type and she's preparing for another day at school. In some ways, it is hard to believe she is turning 10.... in other ways it seems like she should be much older. It's been both a long and short time to me. The years are gone, but the days, sometimes, seem to last forever. If you love an Aspie (person with Asperger's), you understand.
     She just informed me she has a science test today. I asked her if she needed to work on it, and she replied "it's at school, not here." So I had to rephrase it, do you need to study to prepare for it?... she answered "I don't know.. I didn't write anything down about it". Some things get easier, other things don't seem to change, or even deteriorate... But we are in this together and God will see us through.

    Happy Birthday Precious Rachel! She's taking cupcakes for her classmates. Someday, I'll get brave and try to have a party for her. She has never had one...

FYI- Mayo's info on Asperger's

     Some have inquired about Asperger's, so I thought I would share a basic overview with you, from the Mayo clinic. It's symptoms & severity vary from person to person. And of course, other conditions affect/are affected by Asperger's. (Rachel has a seizure disorder, ADHD, OCD, IED, PANDA Syndrome.....along with Asperger's. Incidentally, it's not uncommon for these children to have more than one condition.)


                                Asperger's syndrome  via Mayo



Definition

Asperger's syndrome is a developmental disorder that affects a child's ability to socialize and communicate effectively with others. Children with Asperger's syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics.

Doctors group Asperger's syndrome with other conditions that are called autistic spectrum disorders or pervasive developmental disorders. These disorders all involve problems with social skills and communication. Asperger's syndrome is generally thought to be at the milder end of this spectrum.

While there's no cure for Asperger's syndrome, if your child has the condition treatment can help him or her learn how to interact more successfully in social situations.


Symptoms

Signs and symptoms of Asperger's syndrome include:


Engaging in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject

Displaying unusual nonverbal communication, such as lack of eye contact, few facial expressions, or awkward body postures and gestures

Showing an intense obsession with one or two specific, narrow subjects, such as baseball statistics, train schedules, weather or snakes

Appearing not to understand, empathize with or be sensitive to others' feelings

Having a hard time "reading" other people or understanding humor

Speaking in a voice that is monotonous, rigid or unusually fast

Moving clumsily, with poor coordination

Having an odd posture or a rigid gait

Missing in Action!

      So, it all got more serious over the summer... with age, comes new resposibility.... With Asperger's, not happenin' so easily! Rachel was enrolled in, NOT summer school, but the "politically correct":  CSI camp (aka summer school).  It is a different staff, and children from all over the county are her new classmates. Needless to say, she was not a happy camper. That dreaded word CHANGE! Like I warned you, CHANGE is a 4 letter word for Asperger's! One day, I get a call from the principal, letting me know that Rachel slipped out of class & had been missing for more than 15 minutes. They found her hiding in some bushes near the pick-up lane. Up to this point, she spent time crying and just blanking out when things were tough at school, then coming home and taking her frustrations out on me.
      Just a couple of weeks ago, she was not where she was supposed to be after Sunday School, before worship. I felt fairly sure she was ok, but my heart did react with that frightened drop, until we found her. She had gone with 2 other girls somewhere else in the building. I asked her why she didn't meet me at the usual point. She told me "two girls asked me to come with them". Of course I asked her why she went and she told me she "didn't know what to say to them". So we had ANOTHER conversation about saying NO! We've had it countless times, but obviously, it isn't working. Unfortunately common sense is not a trait of Asperger's. That is not a negative remark, it's simply stating a fact. It's a real problem, especially in this day and age! It's not Mayberry in this time & town. 
       So last Thursday, it was time for her muchly loved Lyrical Dance class. I almost always stay in the lobby just to keep tabs on her and in case she has a seizure. I was able to park right in front of the building. I told Rachel I might run an errand, but I would be back before class was over. (She has taken dance classes for 6 years, same South Daytona Park's building, same wonderful teacher, Miss Kristi, mostly the same students/parents. No changes, so it's very comfortable to her, and her favorite activity of the week.)
      I decided, since it was so pleasant, I would just read in the car. What could go wrong? I was right there. After classtime, I was waiting for her to come out, while watching the other students leaving with their parents/siblings. After a few minutes, I went in to pull her away from Miss Kristi. (We love Miss Kristi...will post on her blessing our lives later!) As I approached the building, Miss Kristi was on her way out the door when she found out Rachel had slipped over to the playground after class, instead of finding me or waiting in the lobby. Once again, my heart sank, blaming myself for not sitting in the lobby. We found her spinning on a gravitational spinning seat on the playground. Makes sense in that she loves to spin. But the park is not the safest area for a child like Rachel (or any child) to be alone. I had to physically stop her spinning and then the talk & questions began. I asked her if she saw me in the car, to which she said NO. Then I asked her if she had looked for me & she replied no, again. There is an innocent behavior with Asperger's, that can be extremely dangerous.
      The responsibility of parenting a child like this is overwhelming. Much of my energy and thought used to go to being an advocate for her and dealing with daily activities at home, doctors.... Now that she is getting older, looks like we've come to a new stage of simply protecting 24/7 along with the other responsibilities. If you see me looking a little weary....you can understand, I hope. I would love to hear, from anyone else, ways to make this journey easier. Simple things, like a childsitter are even near to impossible. To go to a "life-celebration" in NY this summer, I had to fly in Rachel's sister, Emily, from Texas. Sometimes, I long for a break! I miss Mayberry... We need a village!

More Rachelisms

      As I was growing up, and even now, we talked of the "old days", "long ago" or "back in the day" or something similar. It's all relative, of course, but that is just the way we refer to ...earlier. Rachel never uses that terminology. She is such a precise follower of language & rules, that she calls everything that we would call earlier, simply..... "PAST TENSE"! She reminded me that she "didn't like the 'past tense', because we didn't have Rosebug (our dog)."  Sometimes, many times, I think simpler is the clearest.
       Another of her unique perspectives came back at Christmastime. We were in Nashville with my parents (her beloved Nana & Papa). I had gone for my morning shower in their back bathroom. Rachel uses the "pink" bathroom off the hall. Mom said Rachel was kind of wandering the house before she stated: "Nana, mom must be in a 'non-room'."  She had looked in every room she knew of, & instead of saying she couldn't find me, she just noted I was in a non-room.
      And long before the I-phones, I-pads... Rachel used her original term "I-Plan" instead of either idea or plan, a simple combination of the two. She still refers to I-plans at times. Hey, maybe she is a future Bill Gates!  ;0)
       Yes, she keeps me on my toes! and helps broaden my thinking & language skills!
    

Rachel, the Teacher

      Two weeks into the new school year and the note comes home.... Teacher requests conference... I'm thinking what took so long? (longer than in years past).... Guessing the time & date will accompany her home, today. 
      Rachel's 4th grade teacher is an energetic, positive teacher, Ms. Adkins. AND, She has the most wonderful intervention teacher, Ms. Samar. If it weren't for her, my days would be much more complicated and stressful. Rachel ADORES Ms. Samar, as of course, so do I. Rachel gets out of the car, now, by herself in the mornings, not even in tears!
     Every single day until mid-year, last year, I've had to walk Rachel to her classroom. Her first grade teacher told me I was enabling Rachel's crying, etc, by walking her to class. I tried to explain to her that she would NOT get out of the car, if I didn't accompany her. By the end of the year, Mrs. Marshall understood Rachel better & even apologized. When we went back to see her the next year, Mrs. Marshall teared up, hugged Rachel & admitted she had learned more from Rachel than she ever had, from any other student & she was her fav. That's right, Rachel was the teacher. Yes, I stood there & cried. It had been a difficult entrance into the public school setting. We have been blessed with some wonderful teachers.
    One of the hardest things I've had to deal with, is the judgments and criticisms from some, even well meaning, people. I am constantly reminded to never judge anyone. I don't know what their walk has been, or what they are dealing with in their life, right now. Acceptance and a loving attitude mean so much to me. People used to think Rachel's toe-walking was cute... they would smile when they saw her on her toes...lately, those smiles have turned into harsh stares & pointing, as she is growing up and more is "expected" of her. (For those of you that don't know Rachel, she is a "toe-walker"...exactly as sounds..she walks high on her toes a majority of time.) I have noticed a plus for toe-walking... amazing calf muscles!  ;0)
     Thanks for letting me ramble... Off to Ballet this afternoon!

Amelia Bedelia a.k.a. Rachel

      Have you ever read the Amelia Bedelia book series? It's a fun series of books about a girl, named Amelia Bedelia, who is completely literal! The author is Herman Parish. When I read them with my 4 older daughters, we laughed and enjoyed them, thinking this "character" was charmingly naive.... When I started reading them to Rachel, she was as baffled as Amelia Bedelia, and did not get the word plays. I realized Rachel's thinking was quite similar & her interpretation (or lack thereof) of our language is quite different than most of ours.

      We now, lovingly, call some of her "interpretations" & ideas - Rachelisms. I occassionally, just phone one of her older sisters & tell them we have a new Rachelism. I procede to share with them her latest, new to us, way of looking at words, etc. that has prompted me to smiles & even laughter! I do wonder if the writer of Amelia Bedelia had someone close to him with Asperger's or a PDD of some sort. Their thinking is NOT wrong, but different. It's sometimes more accurate than what the "norm" is.

     For instance: In 2nd grade, the first day was filled with learning about their classmates, etc. They each made posters representing themselves. All the children wrote their eye color... blue, green, brown hazel, but Rachel wrote "wite". I questioned why she wrote that instead of blue. She simply pulled her lower eyelids down, to show me most of her eye is white, not blue.  True enough.

     I explained all of this to share her newest Rachelism. Yesterday, she was deep in thought about something when I picked her up from school. She said she had a note. My heart kind of dropped, not knowing what it might be. She said it was a good one. That "We are doing something FUN for our school. WE are having a race." I interpreted this to be a track meet or something similar. She said "I don't know what it is, it might be a race down the hall." I'm driving, trying to think what she could possibly be talking about, as she gets more & more frustrated with me. When we got home, she handed me the packet for her school's Fund Raiser", aka Rachel's Fun Racer. When I tried to explain it, she decided it was called a Fund Raiser because it is Fun. These things wear me out sometimes, but I can only imagine how confusing it is to her. I just nodded & told her maybe so. Some things are just too foreign to explain satisfactorally to her.

Once upon a time....

    Once upon a time.... (September 10, 2000), a beautiful, loved, baby girl was born. She had huge, blue eyes, that immediately seemed to be in search of something... She had extreme reactions to: TOUCH, TASTE, SOUND, SMELLS... She, actually, never took a bottle, thus requiring a feeding tube for nourishment....

      Time was spent in Arnold Palmer Hospital for Children....Her Doctors were somewhat baffled, but continued treating symptoms...Time spent in Halifax Medical Center...Time spent in Wolfson's Children's Hospital... Time spent in Nemour's.... Extreme Failure to Thrive... She spent very little time sleeping... most of her time was spent in apparent distress, manifested by unconsolable crying, screaming, kicking and hitting... As difficult as her symptoms were, she was/is still loved unconditionally...
    
    This is the first posting, I've ever written for a new blog. (Of course, it may seem obvious to you!  ;0)

     I am the priviledged mother of that precious, challenging blessing... my youngest daughter  - Rachel.  She is now, almost 10 years old. Over the past 10 years, I have gained a lot of knowledge regarding a variety of conditions & diagnosis', but still consider myself ignorant in many areas, with more questions than answers. Her diagnosis' have changed, been added too....I will share more at another time.

    What I plan on writing and sharing with you are (1)some of the highs & lows, (2)some of the successes & failures, (3)some  suggestions for those finding themselves in similar roles, as well as, requests for suggestions, (4)some things that lead me to tears & many things that lead me to smile...and even laugh out loud!

     Join me on this journey, will you?.... share with me as you feel like it... I'm hoping this will be a blessing to others, as well as therapeutic for me, a simple mom, that wants the best for my children! I pray this blog to be uplifting, but honest... We were chosen to care for a very special child. She is a gift from the Creator of All, GOD Almighty, and HE doesN'T make mistakes!