Update to "Baby It's Cold Outside"

Well, I knew that the so called emergency with our pipes freezing was kind of an impossibility and it's quite comical.  When I got home, I immediately walked into the kitchen with Danielle, turned on the faucet and within less than 5 minutes the hot water came on.  I had to explain to her that right now it may take a little more time to warm up.  But I think it was her way of trying to get out of doing the dishes...and there lots of dishes.  But she got it all done today and she did an excellent job!

Moral of the story?  There isn't one, just teach with patience and a little laughter! :)

Baby It's Cold Outside...And Inside!

I have found it pretty interesting when my daughter is home, by herself during some kind of school vacation.  Of course this week finds our out due to Christmas and New Year's.  But I have noticed with a child/teen with FASD, that little matters turn into extreme volcanic eruptions and the situation has to be resolved NOW!  But since I am at work down in Salt Lake and she is 40 miles north of where I am...getting it down NOW is an impossibility!  She calls me all frantic saying that there is no hot or warm water coming from our facets...anywhere in the house!  She has tried getting a hold of our landlord and he's not home, in fact she has walked over there a few times.  I told her that the pipes are probably frozen and things will be fine.  But from her stand point, things aren't and won't be fine until the problem is resolved.  So I have reassured her that I will get it taken care of when I get home.  I just feel real bad when she gets that anxious and I'm not home...

And The Beat Goes On...

We've made it through the Christmas holidays in one piece?  Normally, and it did show this year, all the stress, activity, large family gatherings sets Danielle off.  She can't handle too much stimulis but for some unforseen reason, this year she did great.  There were a few episodes to where we were with family members and she had to talk louder and at the same time, this has been one of her coping mechanisms, that's when mom and/or dad, whoever she is with, kind of gently pulls her close and lets her know she is okay.  Christmas is always a fun time because of the little child she is within.  She may be a 15 year old but her mentality is around 10 years of age.  She still has the child-like innocence about her.  I made the mistake of giving her free reign of my glue gun.  She made everyone's gifts this year.  I will take a picture of mine when I get home and post it.  At least I know from family members that her gifts are always appreciated.  This year all she really wanted was music, music, music and then maybe a DVD.  Her room is always filled with some kind of sound coming out, but of course I have my rules of what is allowed and what isn't.  She is pretty respectful in that area.  Now I have to contend with the make-up issues.  I am blessed to have a Mary-Kay lady as my oldest daughter and she has sat down many times with Danielle about how to apply and color coordinate.  But Dani likes to take her tips from girls at school and she comes home with this heavy eye liner on.  OMGosh!  How do you get it through to an FASD teen that this is not right?  Persistence I think is the answer and lots of eye make-up remover.  But that is what I mean...and the beat goes on!

A 15 Year Old's Birthday...

Today is my Danielle's 15th Birthday.  Where has the time gone?  We have been through so much in her 15 years...but it has all been worth it.  To see where she is today.  Just a couple of weeks ago she started full time at her junior high.  No more transitional school.  She is only in two main stream classes, science and choir.  But her science teacher happens to be her resource reading teacher.  In choir are a lot of her friends.  She is so excited because on the 17th of December is her first choir performance.  First time ever performing with a group.  I am excited for her.  She is on the honor roll, and her new progress report just came home a couple of days ago and so far A's.  Right now, things are going good, but there are always going to be hick-ups and bumps, it's just the nature of the beast.  The beast being FASD.  Some days the beast is easily slain, some days it takes longer and I find I have to have a special plan.

But for now I will just tuck that plan in my pocket and enjoy each moment that comes.  She's 15 and that won't last too long. 

Thanksgiving...What I am Thankful For!

This holiday season finds me checking my list of what I am really thankful for.  First and foremost is having a physically healthy daughter...Danielle.  We may have challenges and disabilities, but she is healthy. Then the love I have for my husband and the love he has for us and how hard he works for his family.  Then my extended family, my daughters, their husbands, one of my daughter's fiance and my granddaughters. Then most of all is the love I have for my Savior and my big brother Jesus Christ and for His atoning sacrafice for me.  I know that He and my Heavenly Father loves me and knows me personally.  I know He doesn't give me any challenges I can't handle.

Part of our Thanksgiving tradition is to put up our Christmas tree and decorate it.  Along with having a simple dinner Thanksgiving night.  But this year was a little different.  First my wonderful husband bought me a new tree, one that already has the lights on it.  Our last tree was too difficult for me to put together and decorate. But the tree went up and Danielle and I decorated it. Then family came over for a wonderful Turkey dinner.  Brenna, Jason and my granddaughters came over and we played games. A wonderful time. Looking forward to the Christmas season.

Bully's. No place In My Life For Them!

I have to wonder why parents raise children who prey upon the weak or mentally ill or disabled.  My daughter is my hero!  For a teen with several things going against her, she has choosen to live her life by certain standards.  For instance, no smoking, no tattoos, no piercings, no "R" rated movies, good uplifting music, surrounds herself with uplifting friends, no swearing, this young lady has a love and testimony for our Lord.  Now, there is a girl at her school who herself suffers from mental illness, and who at one time was Danielle's friend, who decided to go down a different road.  Because of the choices that Dani has chosen she told this friend that she didn't want to be friends anymore.  Now this young lady taunts Dani and bully's her to no end.  I have gone to the school, I have emailed her teachers, at both schools and vice principle with no action as of yet.  I am keeping her home from school tomorrow because this other young lady yelled in my daughters face today that Dani was a "b---- and a whore along with being a black idiot".  Sorry but that is where I draw the line.  This taunting is making Danielle physically sick.  So, if I don't hear from the school tomorrow, I will go to the school district.  Again...why do parents raise children who prey upon the weak and disabled?  But I cheer for my daughter, she is my hero!

Parent/Teacher Conference

Tonight I had parent/teacher conference with Danielle's teachers and the transition school.  Her teachers say she is doing great, but she has this impulse to just constantly talk.  Something that a lot of the kids in her class love to do.  So that is one of the goals they are working on with her.  Then come January they are going to flip/flop her classes.  Go to junior high in the morning then the other school in the afternoon.  We will see if she can wake up that early for class work, so far it's been at 9:30 for class time, now it will be 8am.  Another transition.  But in the long run they are getting her ready for high school next year.

I don't know if I have any right in saying this but I have to put words to my feelings.  In one of my earlier posts I mentioned I went to a FASD seminar.  I sat towards the front and during this class, I was amazed at how many parents were struggling so much with their own situations that I actually felt, for the first time in a long time, how blessed I am to have already been down that road, that things are improving for the quality of life for my daughter.  But don't get me wrong, I know that there are many bumpy roads to travel but at this point in time...I can take a deep breath and exhale.  At least for right now.

Bragging Rights!!!!

Danielle called me while I was driving home from work, all excited because she got her report card.  She read it off to me so excited I had to wait until I got home to take a good look at it.  Here it is:  B, A, B, B+, A, A+...Honor Role Student!  I am so proud of her!   This was made possible because of a mom and dad fighting for what is right for her in her IEP meetings.  She is graded only on the work she does in class, she doesn't bring homework home because she would have meltdown after meltdown and that wasn't good for her or our family.  Dani is doing so good.  I had to brag for a minute!  We do have our moments but overall it's better than it was a little over a year ago.

FASD and Humor...We all Need It!

I went to a FASD seminar tonight that was hosted by the Utah Fetal Alcohol Coalition.  The speaker was from the SAMHSA FASD CEnter for Excellence out of Maryland.  So much information and knowledge about these kids that I came home with a different outlook on my daughter.  One of the things he said was to remember something funny about your child.  The last funny thing I remember happened just last week, on our way home from a doctors appointment.  During her appointment she was telling her doctor that she has many spurts of energy and she doesn't know what to do with it when it happens.  So on the way home she kept talking and talking and talking.  Never stopping.  I stopped her and asked her if her excessive talking was like one of those energey bursts she talks about with her doctor.  She stopped and looked at me sideways and said "No mom, it just comes naturally!".  She was so serious and proud of her proclamation that I laughed.  She started laughing with me, I don't think she understood why I was laughing but it was a precious moment.

Happy Halloween!

This is my favorite time of the year.  From this day forward because the leaves and changing colors, the air is crisp and it's the one night a year that my daughter gets real creative with her costume.  And yes, she does design what she is going as.  It's as much fun going shopping with her then watching her put it all together.  Some stuff she finds around the house, has saved over the years but she is very creative.  This year she chose being "Cleopatra".  One more thing I have to brag about is a goal she has just met.  She has always wanted her hair straight but because of my hands hurting all the time I couldn't work the iron very well.  Last week she accomplished her first goal to independence...she straightened her own hair.  And she did a great job too.  Here is a picture of us tonight!  Enjoy...being FAS and having other disabilities doesn't stop these kids from accomplishing what they want to do...you go girl!

Exhausted...

This time I am turning to you the reader for advice.  I would like to hear what you do for relaxation, what do you do to put balance into your life as the parent of a special child?  What is your dream for you?

I have dreams of going back to school someday, I have desires to be a nurse.  I want to go on a trip (short) without having to worry about my daughter or be interrupted by lots of phone calls.  There are so many days and nights I wish I could just check into a hotel and sleep, sleep, sleep.  Of course have room service, but more sleep. 

So...what is on your mind?

One Word..."GPS"

I just discovered the neatest toy or should I say invention?  I have been having some trust issues with my daughter about her being where she is suppose to be.  Usually it's not where she is suppose to be or where she has told mom or dad.  I struggled for along time of what to do.  I looked into baby monitors but the mile radius is not far and I needed something since I work abougt 40 miles away from home.  Then I asked my employer about me hooking up Skype so that at least I can see and hear her check in with me when she gets home.  They said no.  Then I talked with one of her teachers and she recommended GPS.  I thought, well I have to buy a gadget and she said "No, it's built into your phone".  So I called AT&T and low and behold, she was right.  All they had to do was flip a switch in all of our phones, go on AT&T Family Map, sign up our phone numbers and I can track her phone anytime.  Wow!  The best thing since sliced bread.  I even put it to the test today.  She called me after school saying she was going to be late because she had to go to the bathroom.  I immediately went on FamilyMap and found she was going the opposite direction of our home, the other side of school.  Boy did I feel empowered and I still do.  I confronted her on it when I got home and of course...she denied it, but I have technology on my side.  I even showed her the map that I printed out and she still denied it.  I know that the denying part is all part of the FASD, it's not her reality but at least I have some kind of comfort of mind to know where she is and that I have the ability to talk to her on the phone whenever I can.  I will keep these maps that I print out and someday it will come to a head, I know that, but at least I will be ready.  I was sitting here before typing this blog entry, thinking of the sweet little girl she use to be when she was small, before all the FASD affects started to rear it's ugly head and I started to get really MAD at her birth mom for doing all those things while she was pregnant with this sweet spirit.  The one person who was suppose to protect this child...didn't.  I became real sad but then within a brief moment, real glad I have her instead of where she could be today.

Mom's Stress Relief...Nintendo!

I just discovered a new stress relief for me.  I bought a Nintendo DS for Dani about a year ago so that Dani had something to do while she was traveling around the country with her dad (long haul trucker) and she didn't play with it much.  Well, it came out of the drawer yesterday, went and bought a new game...a game I wanted for me and now I sit and play with it, with my headphones on and zone out.  Of course after my daughter is in bed and it's my time to relax...ah, sweet relief.

What things do you do to relieve stress?  I am looking for new ideas, please feel free to share.  And when was the last time you did something just for you?

Crisis Plan...Do you Have One?

As parents, we feel many of the things about our child's mental illness are out of our control.  We are scared of the "worse case" stories about mental illness.  We struggle with the reality of our day-to-day life and wonder about the future.  We learn about the high rate of suicide attempts or suixide and feel over/whelmed with the fear we cannot protect our child from these dangers.  But, by making an effective crisis plan, we can have the tools we need to help our children in times of crisis.  Crisis happens in everyone's life, and no crisis plan ever written can keep a crisis from happening.  An important tool to help us deal with what may come is clear, well thought out crisis plan.
1)  Effective crisis plans anticipate crisis based on knowledge about the past.  The best predictor of future behavcior is past behavior.
2)  Great crisis plans assume the "worst case" scenario and plan accordingly.
3)  Effectivce plans incorporate individual and family outcomes as benchmarks or measures of when the crisis is over.
4)  Always build plans that "triage" for different levels of intensity, and severity of crisis events.
5)  Build a crisis plan for 24-hr response.  Crisis seldom occurs when it is convenient.

Ignorant People...Sad When it's Family Members!

Do you ever have those times were you are in a crowd of people and you hear ignorant statements about the mentally ill?  Do you ever want to just slap them?  I hear those statements all the time...of course they say they are just joking.  But when it comes from a family member, that is when my red-headedness comes out.  I have a step-son, who is very educated, due to graduate from college this coming April (congrats to you) that we are friends on FaceBook.  I can understand the frustration sometimes of life, especially when it comes to a class that may be a little bit harder than what he or she  can comprehend.  But this one day he made a comment of  "HATES MATH!!!! If math was a home less 8 year old with special needs, I would still punch him in the face.".  My reply to him was "That's really funny since you have a sister that has special needs..."  It's remarks like this and any reference to the special needs/disabilities/disabled that get my feathers ruffled.  These people have no idea how lucky and blessed they are to not be labled as "special needs".  They have no idea...

Standard Examiner/Ogden, Utah/ Article!

I co-teach a class every Wednesday for 6 weeks called "From Hope to Recovery".  Our local newspaper came to our first class last week and did this article for us.

Group helps families cope with mental illness
By Chris O'Nan
Created Oct 5 2009 - 10:42pm
Standard-Examiner Davis Bureau

CLEARFIELD -- Gary Smith stood before a group of family, friends, teachers and health professionals as they piled demands upon him in the form of cleaning supplies, pots, books and medicine bottles.

Each member of the group held one end of a piece of string and attached the other end to Smith to represent their ties to his daily life, all making demands and saying, "Is that too much to ask?"
Smith said he felt "strung up and weighed down."
The exercise was part of a From Hope to Recovery meeting that is helping people care for mentally ill children with support and information.

After the activity, the group discussed ways they could get help from others and eliminate some of their daily pressures.

Smith, of Washington Terrace, said he has dealt with mental illness within his family for most of his life and wants to share his experiences with others.

Karen Greenwell, program manager for Allies with Families, directed the program. Allies with Families is a nonprofit organization that provides support, education and advocacy for families who have children with mental illness. The organization is funded with federal, state, and local grants and contracts.

"Our goal is to have one From Hope to Recovery program every quarter in various areas of the state," she said.

During the meetings, volunteer program teachers Susan Seper and Diane Hess lead the group with PowerPoint study materials, discussions and activities.

The group focused on such areas as:

SBlt The impact mental illness has on family members, including siblings, and ways to cope with various situations.

SBlt Diagnosis of illnesses, such as bipolar disorder, ADHD, schizophrenia, depression, anxiety and eating disorders.

SBlt Navigating the mental health system.

SBlt Helping children with mental illness succeed in school.

SBlt Education about services provided for people with disabilities.

SBlt Self-care and coming to terms with a mental illness diagnosis and daily living.

"As a parent of a child with mental illness, I want to give other people hope so they can do more than just survive," Seper said.

"I took this program myself, and found coping techniques and support so we could be successful in dealing with day-to-day living."

She said as a single parent, every aspect of her child's treatment and life needed her close attention.

"I was the one who had to make every appointment and respond to every call from the school," she said. "Everything depended on me, and I had no help."

Seper said she learned through the program how to get help in the school and what services were offered for her son.

She said she also became better prepared to respond to medical professionals.

"I met other parents in similar situations," she said.

"We exchanged phone numbers and called each other and talked. It let me know that others were in the same situation, and I was not alone."

She said because of the help the program provided for her family, she decided to volunteer as a teacher to share with other people, so they could have the same experience.

"We still have our struggles, but I am better able to cope with things as they come up," Seper said, "and I can better explain our situation to others so we can get help."

A Tired/Worn Out Mom's Disclaimer!

I just want to put this out there on the table. Although my blog posts sound like I have it all together and I am handling things pretty good...I really am not.  One thing our mom's of FASD kids or kids with disabilities do is mask our true selfs.  We mask and cover up our frustrations, hurts, tears, nights of no sleep because we worry if our child is wondering around let alone leaving the house, all the times we sit down in front of the TV with a container of ice cream, hopefully to make ourselfs feel better about ourselfs...it doesn't work.  This is how I am.  There are so many hats that I wear in my family, and each of us are different, with the ability to wear different hats and how many but I know what my limitations are.  I run around feeling like I have a grip on things, I am happy, Dani is happy and doing good, then a stick of dynamite is set off and the cycle of madness begins.  Then my limitations are disrupted and I have to refigure things again.  I learned from a class I took a few year ago that it is okay to dislike your child, along with their disability.  There are those times I feel exactly that.  I come home form work, put myself in auto-pilot, go through the motions, go to bed and begin again.  Tonight is a good example, come home, do dishes, make sure dinner is ready, have my ice cream, blog and veg out. 

This is my disxlaimer, I am not perfect, I will never be, I will never have a decent nights sleep, I will constantly ache (Fibromyalgia), my hair will never have that rich luster, there will be times I feel like running away and not taking my phone with me, the rest of my disclaimer is that I am normal as a parent of a child with this NASTY disability!  (If this didn't make any sense, welcome to my world as of today)!

Do Mom's Really Get a Vacation?

Well, I took a small vacation as I explained before, went to California to visit my daughter and her fiance.  Thought I could get away from it all with the worries of what Dani is doing or getting into.  But here is the scenario.  I am sitting in the airport bright and early Friday morning, Dani had a friend spend the night so she wouldn't be alone (this friend also has some mental disabilities) but this friend decided to go home instead of going to school.  The next thing I realize is I am getting a phone call from her dad, saying that his daughter was complaining of hearing voices and my daughter took it upon herself to offer her one of her Serroquel.  Not a whole one but half a one.  He was more upset that his daughter took it and I immediatley called my daughter to explain things, calmly (ok, I tried to stay calm).  So with that episode over and gone, made some ground rules, no friends when mom is not home.  Visits with friends will be supervised by me or dad.  So all that was before I got on the plane.  Then on Saturday, there was the confusion about where she was suppose to be, either at home or at my oldest daughters house.  Some miscommuication took place but that was resolved after feelings were hurt and lots of crying took place...by me none the less.  Worked through some deep feelings with my daughter (who I was visiting) felt very good to get my pent up emotions off my chest.  Then the next day (Sunday) I get a call from my oldest daughter saying that Dani took a box of Mac and Cheese home to cook, without asking.  Now normally that would not have been a big deal but my daughter keeps a tight budget and has meals planned out, no room for missing food.  Trust was ruined and I had to tell Dani to go home and dig deep in her room for any missing change to pay her sister for that box or else.  Not much relaxation for me because of the phone calls back and forth.  Could not get away from the responsibilities, the worries, etc. it goes where ever I go, I couldn't leave it behind.

So...what can I do different next time I decided to run away?  I have no idea, maybe be more prepared, have her stay with someone different than family?  I don't have that answer yet.  But I know there will be a lot of times I will want to run away and think of me, take care of me, me, me, but until that next time, I will continue to search for answers and better ways. 

There is no VACATION from FASD, there is no VACATION from mental illness, we live with it day to day and those children who suffer with it...they never get a break.  But I believe it is up to us, as parents to help them do their best and know we still believe in them.

By the way, the first picture was taken at Shell Beach, California and the second picture is me and my daughter Ashley.  I did have a great time visiting with her...do it again in a heartbeat!

Vacation...I need a vacation!

Dani has made it through the first illness of the year.  By last Thursday she was so sick I took her back to the doctors and sure enough...she had the triple wammy.  Flu, Strep and Pnemonia.  But once she got on that Z-Pack she started bouncing right back.  She went back to school this past Monday and she is doing good.  But mom isn't.  I am so tired, cranky, irritable and yes, I got a cold while Dani was sick.  As mothers to these special kids, we are the last ones to take care of ourselfs, we are the caregivers to others but oh no, not us moms.  So...I haven't done this is years and I literally mean years, I am going away for four days...all by myself.  My sweet daughter in California has bought me a plane ticket out to visit her and sit on the beach, read, soak up the sun and do whatever I want to do or not.  I leave in just a few hours.  In fact I have my alarm set for 3am MST to get in the shower and head out.  I have been packed for two days, counting down the hours.  So Dani will be taken care of by her big sister and her family, which is good, she can help out with the kids since my daughter is pregnant with her third child.  While her husband is at work, Dani can at least play with the girls.

So if I have a message for you moms?...PLEASE TAKE CARE OF YOURSELFS!  By the way, this is me and my granddaughter KD at her first soccer game. 

Sorry Everyone...

I had to take Dani back to the doctor yesterday and she has the triple whammy.  The flu, strep and pnemonia.  She has never been this sick before and low and behold...I am sick now.  So I am taking just a couple of days off until I get my strength back up again.  I promise I will address the notebook that I have with pictures.

When a Child with FASD Gets Sick...

I have noticed in my household that when my child with FASD gets sick, the whole world falls apart. My daughter is a 14 year old with the maturity and mentality of a 9-10 yrs old, but when she is sick she is 6 years old. The whinning begins, all things taught to her about sneezing or coughing into her elbow, tissue, etc go right out the door and I have to keep reminding her those important things so that others don't catch what she has. I always question if she is really sick because with kids who are FASD have a tenency to lie about things and make things up for the attention and I thought this was one of those times. She went to bed early last night, moaned and groaned for a little bit, she did run a fever and when it was time to get up for church this morning, the headache, dizziness stuff came along. I thought she was pulling my leg again. There are those Sundays she doesn't want to go to church with her mom because she feels she is being teased, and I thought this was one of those Sundays. But lo and behold...she is really sick. Took her to the doctor's and she tested positive for the Flu A Virus. Then I come home feeling like a terrible mother, and this is where I get mad at Dani's birthmom for doing the alcohol/drugs while she was pregnant with my special daughter but then comes all the lessons and lectures about forgiveness. Thats when I take a few deep breaths and get back to the task of taking care of my sick daughter.

The Book...

I learned along time ago that there are a lot of papers, documents, test results, IEP records, etc when there is a child with disabilities in the household. So...I have a huge three-ring binder with certain sections divided off. But it is so important that in front of all the records you start off with positive things about your child. After all, like me,

I take this binder with me to all my meetings and I want whoever I am meeting with to know the good things about Danielle before we get into some possible negative areas.  In mine the front page is a picture of Danielle with one of her favorite scriptures.  Then maybe some artwork, or pictures, or in my case, as one of Dani's class projects a couple of years ago, each student was to write something positive about each child in that class.  I have Dani's in her notebook.  I have just a couple of pictures that I will include right now because my camera died...how tacky is that...but more of about my binder to come.  And in more detail.

Chore Chart!

For many years, I have been trying different chore charts, different ways to teach responsibility but also to teach consistency.  One thing I have learned with Danielle's FASD, is the way she learns is through consistent, repeating over and over what she is suppose to do.  She also has a hard time remembering the smallest of things so pictures work the best.  I found this one through my daughter.  She bought one for her own kids first and I like the layout of it.  So I bought this two weeks before school started and so began our getting use to the routine.

Favorite Picture of Mine!

I have to add this picture in here.  When Mike and I got married we started a trucking company called DMD Trucking (Danielle, Mike and Diane) and Dani and I would travel the US with Mike.  Well, Mike and I studied out the best homeschooling programs and found one that we were able to take with us on the road.  Mike and I would rotate driving and teaching.  This is when Dani had learned from her dad the art of visualization.  But I just love this picture of my sweet little girl doing her "road" work (not homework).

I have a huge notebook that I use for Danielle's history that I am going to be taking pictures of and posting them here, hoping to help someone organizae their paperwork.  Also some other ideas I am using here at home with Danielle.  So please stay tuned.

Talents...We All Have Them!

I do have to do some bragging on Danielle's behalf...she has an incredible talent for art.  It's funny...when I first married Mike (her dad) we use to travel the United States because Mike and I owned our own trucking company and we home-schooled Danielle in the back of our big-rig.  Well, one day she got frustrated because she could draw a simple flower.  Mike had me get behind the wheel and drive for a little bit while he sat with her.  He simple told her to "close your eyes and invision that flower.  Think about it for a few minutes and then when you open your eyes, draw what you saw".  Well, she did, she opened her eyes and drew a beautiful flower.  Since then she has a passion for drawing, coloring and yes...oil painting.  This has been one of her coping skills that she has been able to tap into when she feels like she is loosing her reality.  Another talent this young lady has is her poems.  She writes such poems that are so insiteful to her world and she has even put a few to music.  I believe with all of my heart that children and adults who have disabilities have amazing talents, whether it's in music, art, sports, whatever.  I have included a few of her artwork.  The oil painting of the Sunflower is my favorite.  She did this for me out of the blue after my accident, she said she wanted bring me some sunshine, especially since she knew that sunflowers are my favorite.

The Hard Days Sometimes Out Weighs the Good Days!

I have to be realistic here...even though my last few entries have been nothing but praise for the progress my daughter has made, for all the alcolades I can lavish on her...there are going to be those days where she is totally off her rocker...unreasonable...has a hard time focusing on reality...that was today. It started out good, even in the evening. I had come home from visiting some friends and discovered her chores were not complete when she had told me they were. Mainly the trash in the bathroom. She argued that it was emptied yesterday and someone used a lot of toilet paper today (when there is no one home during the day but our dog)but her voice started to rise, she started to get sarcastic and I am trying to keep my cool. Boy...thats hard to do. Danielle has a tendency to worry about what is going to happen in the future and worry about the past but not focusing on the present. When she gets stuck in this area it is hard for her to come out. Then it turns into a pity party and how I don't hear or listen to her and what kind of family we should, and tears, did I mention there were tears? Lots of them...very emotional. I just have to sit here and listen to her, that's it, just listen, even though she may repeat herself over and over, she has to get it out so she can go on. Right now, she is in the kitchen making us something to eat and things will be okay. It's extremely emotionally draining, things will be fine until the next melt down. The most important thing I have found to try and relate to her and teach her is "You made a mistake, learn from it, pay the consequence and go on. Tomorrow is a brand new day, a clean slate, nothing is written on it so make it the best you can. Yes you will slip and fall but pick yourself up and go!"

It Was Hair Day!

Today I took Danielle down to an ethnic salon in Salt Lake called "Ebony and Ivory". I thought it was time to learn for myself and have her learn how to take care of her hair. Being a white woman I had no idea what I was doing and I sure learned a lot. The process was interesting and I discovered I was doing a lot of things wrong. But Norma took us step by step on what to do. In a couple of weeks we are going back to have it relaxed. But I think she looks beautiful. Her smile says it all about how she feels about herself. With kids like her, well with any child, self esteem is so important. With kids that have disabilities, their self esteem is affected so much more because they already have bad feelings about themselfs. Feelings of inadequacy, they look differet, etc. But in looking at Danielle, she looks like that is all washed away. Money well spent.

Make a Smilebox slideshow

Make a Smilebox postcard

First Day of School!

Well we did it...we got past the first day of school...and success!!! I think I was more of a nervous wreck than she was. I had to leave for work before she was even ready so of course I worried if she was timing things right with her shower, getting dressed, eating breakfast. But smart mom here (being sarcastic) forgot to turn her cell phone on so I couldn't get a hold of her which made me worry more on my way to work. But as soon as I got to my desk, Danielle called and said everything was fine and she was ready. And the amazing thing is, she was. She did it, without mom, without mom fretting, without mom pushing her. She figured out. I am so proud of her! In talking with her during dinner, she had a great day, it was just going through rules and expectations in each class. No homework yet but we have started the new schedule at home. And here it is after 7pm and she is doing great. I know there will be those days when things aren't going so smoothly and I am expecting that but at least she is trying...in spite of her nervous mom! :)

When is it Enough?

As a general question...when is it enough? The word "enough" could mean anything, but for me "enough" means my limits. How and when can I say "enough" because I am at my breaking point. I have to admit though that this summer with Danielle home has been wonderful. No worries about hospital visits (even though we did have one and it was minor), but everything was workable. But there are those times where I just want to scream at the top of my lungs and swear, throw and real big adult tantrum because of the lack of respect that is shown to me as "mom". I can start out real calm in trying to teach Danielle some pointers to a cleaner kitchen but then she starts raising her voice, slamming kitchen cabinets and stomping around. My head starts pounding, I feel my blood pressure rising...then it's like Mt. Saint Helen's erupting. I just know that I need to send her to her room, which she refuses for a while, then she calms down, then goes to her room. There are so many times I want to throw in the towel and run away but when Dani calls me to read me a poem she wrote or a story, or how improved her reading is, then I move right back into my heart and soul. Like I said...it's an adult tantrum so somebody should put me in time out!

Spiritual Experiences!

In this land of the free, my family practices the religion of "Latter Day Saint" (Mormon) and tonight was our youth night, which we call Mutual. This is for girls ages 12-18. Tonight we all met in a loft over one of our friends garage to have a 24hr Read-A-Thon of the Book of Mormon. My little hyperative 14 year old daughter went prepared with a pillow, blanket and her scriptures. She is not the best reader or the best comprehender but I give her "A" for effort for trying and coming to that activity prepared and ready for a spiritual experience. I wish I could have stayed the night with her but I have to get up for work in the morning. But watching her try her hardest, she knew she was going slow, but she also knew it wasn't a race, I was deeply moved and humbled watching her. Wow...what an example she is to me! It was explained to me along time ago that because of Danielle's disabilities, she already has a seat in Heaven, it's up to her dad and I to get there with her.

Update...Update...Update!

Well, it's been a little while since my last post. A lot has happened this summer. First was Danielle's trip to Maryland to visit her sister and travel around. Then our family camp outs, my ATV accident where I broke some ribs. Now it's time to get ready for a new school year. I can't believe that this summer is almost over. Didn't really have anytime to enjoy it. Work all the time, come home eat, relax a bit then bed. Start over again the next day.

Summer has been good for Danielle. She has done amazing staying home by herself. I am blessed to have her sister who lives around the corner in case of an emergency. But we have registration on Wednesday...can't believe she is in 8th grade (Freshman). Where does the time go? So, next week starts a new chapter in our lifes. Transitions are not always fun or easy, they are more like a challenge, especially in our household. But we manage some how, don't know how but we do.

Cute Happenings! Made me Laugh!

This week has been a little stressful, not only getting my daughter Danielle ready for her trip to Maryland but my oldest daughter Brenna and her two daughters, Kaitlyn and Kyla were off on a trip of there own to California to visit Brenna's dad for a week. My children are everything to me, that includes my granddaughters. There isn't a day that goes by that I don't either talk to one of them, (mainly the out of state daughters) or see them. I can honestly say that I am addicted to my grandchildren. I know that sounds terrible, but they bring me such innocent and wonderful joy!

But anyway, last night (Thursday night) I had made up little bags for KD and Kyla with coloring books, crayons, cookies, my little ponies, juice, etc. And I made up one for Brenna too of course. This is something I did for my kids when they flew to California to visit my dad. Anyway, KD told me thank you but Kyla was asleep. Kyla (19 months old) called me this morning doing her jabbering to say I am sure, thank you grandma. Then Kaitlyn called me later in the morning, from the airport. She told me she was on the plane and she was excited. When I talked to Brenna she said they were waiting in line but KD called it the "plane port". I was tickled that she called me. Then later in the day after 2:30pm Kaitlyn called me again to make sure I knew she was there and safe. Those little calls and thoughts just warm my heart.

Then my sweet daughter Danielle. She is so excited to be going on her trip, she came home, got my big suit case, and piled her clothes in and zippered it...she was ready to go. So tonight I sat down with her in the livingroom and we went through what she had. Actually, she didn't do so bad. But in her backpack, she was trying to take too much with her. So we downsized, got her outfit together for her trip, went over basics, made sure I had her important documents together and I think we are ready. I did get a message from her sister Raelyn, in Maryland that they have reservations for the White House on Thursday. How exciting is that? But I worry about all this over loading her, but I have complete confidence in her sister (Raelyn) that she will be just fine. I am so excited for them both, to spend time together, do some fun things, etc. I am real jealous now.

One thing I have learned from this is to make sure she has a good supply of meds, anti-itch cream, plenty of batteries for her MP3 player, lots of crayons, her comfort blankie and her little dog she sleeps with. With those things, she is secure and ready.

Time to Travel...

Well...it's done! With the help of my older daughter Raelyn, I got Danielle's plane ticket purchased for her trip to Maryland. She is going to spend a wonderful two weeks with her sister and brother in law. I am so jealous!!! But I know she will have a wonderful time. It's funny though, years ago, Danielle was flying to California, all by herself (I think she was about 5-6 yrs old) and now that she is 14 I am having a harder time with her going. I have to ask myself is it because her disabilities are more prominant now? Her judgement not so keen? No...I don't think so, I think a lot of it is me, learning to let go. Knowing that Danielle is going to be just fine without me. I want her to have that autonomy away from mom, I want her to have a life. This is the first step, at least for me, in letting go. Danielle is going to spread her wings and fly and she will be great.

One of the exciting things about her trip is that she and her sister Raelyn and Mitch will be going on a tour of the White House. How cool is that. I have to remember to get her a camera.

"I Will"

I will never have the child I dreamed of adopting
But I do have the child
God planned for me to adopt.
So I will adopt new dreams
For my family and daughter.

I will never be able to be the mom I wanted to be.
But I am “her” mom
So I will be the mom she needs.

I will never have a “normal” day – one without meds,
Doctor appointments, therapy, IEP meetings.
But I do have normal moments.
So I will learn to savor the moments
And take each day as it comes.

I will never be able to assume my daughter can
Follow the simple rules, act appropriately, understand the
Consequences of her actions, or be safe.
But I can surround her with a support system
Who will think for her, remind her of the rules
And consequences, and keep her safe.
So I will be her external brain.


I will never know what my daughter could have been.
But I can celebrate the wonder of who she is and what she will
Become.
So I will give her all the love, support, encouragement
And the tools she will need
To become a productive adult.

I will never be able to change the fact that
The birth mother drank during her pregnancy.
But I can forgive.
So I will not condemn, pass judgment or hate her.

I will never know a bigger joy than watching my daughter master a new goal,
Remember a rule, or sleep thru the night.
But I can lower my expectations of them and myself.
So I will celebrate with my daughter every mountain climbed
And hurdle crossed.

I will never have a day that is not wholly consumed with the results of a
Woman who drank during pregnancy. But I can raise the community’s
Awareness, education and support of this totally preventable birth defect.

So I will…
So I will…

Please Stop the Merry-Go-Round!

Just when I think I have things figured out...I don't. Just when I feel comfortable with how things are going...something comes along to topple my world. With Dani's disabilities, she has a hard time distinguishing what is reality and what is not. She has a hard time also staying in the now. One of her problems she is working on with her counselor is staying in the now. She tends to worry about either the future or the past and not focus on what is happening now. But when I got home from work, she was telling me her sister in Maryland called saying how excited she was for Dani to come out for a visit in a few weeks. I checked the phone and there was no call from her sister. I asked her about it then she said she thought she was talking to a hispanic girl who had a cold. She had somehow gotten the two confused, I don't know how, the brain is such a tricky organ that I can just imagine how things get jumbled up. But even though the evidence was right there that Raelyn did not call, she stuck to her story true and true. Then she got frustrated, irritated, aggitated and just plain mad at me. This is about the time she should be practicing her coping skills, which I am proud to say...she did! That was the right step in the right direction. Now I understand where the saying of "Choose your battles wisely" comes into play.

Catch-Up Time!

Wow! I can't believe how long it's been since I updated this blog. Life sure has gotten away with me. So, let me catch you all up.

Danielle came home from the state hospital last October 08' and what a transformation she went through. I look at it as if she were in this cocoon and she came out this beautiful butterfly. She knew who she was, where she was coming from and where she is going. Once home, she started at a transitional school (Canyon View), to where she was full time, only small amount of kids her age, then she was transitioned into junior high by one class at a time. We are up to two classes in the afternoon, but that still has a way of stressing her out. We have discovered, by track record, that around February-March she starts getting worn out. Her Bipolar attributes come screaming out of her. By this time she had almost forgotten how to use her coping skills. I was feeling a little frantic on trying to help her remember but the more I tried, the more angry she got at me. We started back to counseling sessions and of course monthly visits with her psychiatrist. Her medications are good, she was on 4-5, now she is only on ONE! She doesn't hear the voices anymore, her self-esteem is up (fluctuates once in awhile, you know how girls are). She has tapped into her talents and skills. Danielle is a very creative young lady, not only does she draw and paint but I discovered she writes songs and poems.

Now she is at the age that I start worrying about her future. She is going to be 15 this year and I wonder what kind of quality of life she can have. I had a candid talk with her doctor today, she assured me that there are many programs, that once she hits 16-17, she can get involved with that will teach her survivial skills. She takes care of herself pretty well now and she does know how to cook, but it's the common sense things that worry me like how to catch a bus, how to get to your destination without getting lost, etc. As a mother, I want her to have a full life so she feels she doesn't always have to be with me.

There have been rough times since she has been home. Battle of wits between mom and daughter, chores, responsibilities, anger management, etc. There are times I have felt that she would have been better staying down at the hospital a little longer. You have no idea how often I have felt guilty over feeling that. But in a conversation with a friend of mine, who works with "Allies with Families", she said it is SO normal for a parent to feel that way and at times feel resentful. It's just that by the time I get home from working my full time job, I don't have the strength and energy to deal with the problems. I have my own health issues and I have a hard time taking care of myself. I have dedicated most of my time to Danielle and researching new things. But then I see the other side of her, she may be 14 but her disabilities have her marked at about a 12 year old, I see a little bit of Heaven in her. There is an innocence in her, that at times I don't see it because of my own problems.

But each day is progress, we can only go forward. We may fall back one step but she and I have a way of forgiving each other and going on. I know I have so much more to say, but its after midnight and I need some sleep. Love to you all!