where Motherhood and Christianity collide

Yesterday was a difficult day for me...in my mind.

You see...Yesterday was Youth Day at the congregation where we attend.  A day that celebrated our youth by letting them take over the worship duties of singing, speaking, praying, leading singing...
It was a beautiful thing!

So, you are probably wondering what could be wrong with that.

Well, I've been getting into my own head lately.  Sometimes I simply think too much.

As I watched those precious young people making their parents so proud, I felt a twinge of loss.

I was active in church from a very early age.  I led youth services as the regular teacher before I graduated high school.  I attended a Christian college.  I worked as a youth/children's director for awhile.  I was the one planning VBS, Christian convention trips, dramatic programs, concert trips, youth rallies, youth days and all sorts of activities for the youth of my home congregation.  Working with kids was something that was natural to me and filled my heart.  As I got older, I dreamed of sharing these activities with my own kids.

Unfortunately, when my oldest daughter was a teenager, the opportunities didn't exist.  Fortunately, I had shared memories (such as teen conventions) earlier in her life because I took her with me everywhere I went.

Then my youngest daughter came along.  With several years between the two girls, things were different.  We were no longer attending services at my home congregation.  We had a new home. :)

At first I struggled to find a place.  Then I taught the transitional (between classes and worship) children's lesson.  I had found something that I could do.  I found something that made me feel like I was working for the Lord not just warming a pew.
However, my joy was dampened after awhile by the fact that my sweet daughter wasn't bonding with the other children.  She didn't seem happy.  I struggled to balance my joy and love of teaching children with my concern over my own child.  My mounting concerns eventually took their toll and I resigned my position in order to focus on being a Christian mom to my own child who I could see was struggling.

I encouraged her to participate in youth activities.  I worked to help her feel more comfortable.  I was failing.
Not only was I now not involved or bonding with the youth of our congregation, I wasn't even bonding with my own child.  I felt like a total and complete failure on all levels.

Then my research led me to autism spectrum disorder...specifically, Asperger's syndrome.
Using techniques that I had learned from a doctor and researching like crazy, I began to develop that bond with my daughter that I was missing.  I was thrilled!  There are always ups and downs but I try to concentrate on the positive no matter what.

Back to Youth Day...
Today as I watched the youth, I felt a twinge of loss...a loss of that dream that I had of being that amazing Christian mom who sang specials with my daughters, chaperoned youth trips, shared my love of drama through skits, etc.  I wanted that dream.  I wanted to be that mom who knew the joy of sharing in their child's adventures in Christianity the conventional way I had pictured in my head...But wait!

Here is where my motherhood and Christianity collide.  Here is where the idea in my head meets the reality of where I am.  Here is where I wonder what it would have felt like to live my dream.  Here is where I realize that I'm not following the pattern in my head but rather I'm blazing a new path seeking Him!  (Ok...Maybe "blazing" is too strong of a word but it sounds more powerful than "stumbling through"...and "blazing" certainly lifts my spirits more. :) )  It wasn't that I was feeling loss in the sense of not having something but rather I was feeling lost in that I wondered where we fit in.

I may not be THAT mom (the one in my head), but I am still a Mom who loves Christ.  I am still a Mom who desires to set that good example for my kids.  I am still a Mom who loves, prays for and teaches my kids what is right.  I'm the Mom who loses sleep so I can make sure that my family is safely tucked in before I close my eyes.  I am the Mom who sacrificed my dreams of a photography career in order to be a special education home school teacher.  I am the Mom who has studied so hard (and continues to study) to help my child that sometimes I feel that I should have an extra college degree!  I am the Mom who doesn't give up trying to explain spiritual things to a child who sees everything so literal.  I am the Mom who will keep looking to find opportunities where I can share Christian activities with my child in a way that lets her be who she is so that I don't turn her away from Him. 

I am the Mom who worked for weeks preparing my daughter for VBS this summer.  

For a period of time I got to see this smile...

and my girl participating in activities (and even winning a game of balloon toss)...

Before I saw my girl, go back into herself...

And I realized how much effort that she had put into that day...

I am the Mom who will keep trying.

I am the Mom who will keep celebrating the victories.
I am the Mom who prays that her twinge of loss can be used 
as a spark to be more creative.  
I am the Mom who will keep supporting, loving and giving.

I am the Mom who is so proud of her girl!

I am that Mom!

So, please forgive me when I sometimes am struck with a feeling of loss and don't misunderstand my feelings as anything negative.  I absolutely wouldn't trade my life now for what was my dream.  It isn't that I've lost anything...I've gained so much!  It's just that sometimes in some ways I am still searching to find my place and from time to time I feel a little lost.

Tears, Prayers and Memories

In the early morning hours, waiting on my darling daughter to fall asleep...as has become our lifestyle (thanks to chronic insomnia which even medicines haven't been able to control but that's another story)...I stumbled upon a blog post shared by someone on social media.  The post was about a family facing the birth of a child asking for continued prayers.  As I dug deeper, I found that the family was facing the birth of a child with an extremely low chance of survival according to the "experts."  My heart ached for this young family as they sought to see God's will in their struggles and faced them with prayer.

Then tears and memories came rushing in like crashing waves. 
I remembered carrying the child over which I was now losing sleep.
I remembered her being a night owl even in the womb.  (Her kicks and twists becoming more aggressive while I was trying to rest for the night.)
I remembered choosing her middle name, Hope, for several reasons but mostly because that was what I was holding onto as I carried her during a difficult time in the pregnancy.
I remembered ER visits.
I remembered her early arrival.
I remembered hearing the word "STAT" from the doctor as my warm newborn was hastily put on my stomach so the doctor could deal with complications.
I remembered watching her struggle to breathe before being rushed away by ambulance to NICU at a bigger hospital.
I remembered the compassion of the doctor as he released me reluctantly to be with my baby instead of keeping me to have the blood transfusion as he preferred.
I remembered visiting her in NICU...a machine helping keep her lungs inflated, machines monitoring her, lights helping with jaundice.
I remembered our first Mother's Day...only getting to visit her during visiting hours.
I remembered all the struggles that we both faced with our health issues over the next several months.
I remembered that once I could hold her...I never wanted to let her go.

And, in that moment, with tears flooding my eyes, I said another prayer of thanks.

My daughter started off life struggling just to breathe.  Her life has been a continual line of hurdles to overcome.  However, she isn't alone.  We face each challenge as a family...a praying family.

We have so much for which we are so thankful and I say another prayer of thanks every time I reminded of that fact.

Couldn't Say No

Fifteen years ago, a handsome young man nervously approached me after a Sunday morning worship service. For approximately the next month, I was treated to short conversations with this intriguing gentleman every Sunday and Wednesday. (Unknown to me, the minister had encouraged members to make my mom and I feel welcome...which was just the push this kind stranger needed to talk to me.)

My mom teased that this fine country boy was working up to asking for a date. I quickly dismissed the idea. Even if he was, I wasn't interested in a relationship. As a single mom, I already had my hands full. I didn't need the complications of dating. I was just fine the way I was.
In addition, this good-looking guy wasn't my type at all. He was a country boy. I dated conservatives or musicians (yeah, two ends of the scale). I wasn't into the country scene.
Then there was the issue of him being too young. I was a single mom with a painful past. Why would I young man be interested in that?
I informed my mom that if he did ask, the answer was "no." (I wasn't interested in putting my heart out there just to be broken again.)

On June 21, 2000, after Wednesday night Bible study, the good-looking young man found the courage to ask for that date. He asked to take me and my daughter to the movies. As I opened my mouth to say "no," I heard my voice saying, "yes!" And, as I jotted down my phone number on a scrap of paper, my inner voice was screaming for an explanation of what just happened. (It was like something out of a comedy movie going on in my head.)

One June 23, 2000, we went on a date to see Chicken Run...all three of us.

~ Summer 2000 ~

When he called for a second date, my "no" again turned into a "yes." By this time, I was curious about why I couldn't say no to this new adventure and I opened my mind to seeing where this would lead. From then on, we've been almost inseparable.

I quickly discovered that his attractive exterior covered an even more attractive heart. He was kind, patient, compassionate, understanding, honest, generous, loving and really loved the Lord...just to name a few qualities. I let go of my hang-ups, so (with nothing to hold me back) I fell fast and hard. My heart was overcome with a love that I'd never known. My stomach danced (and still does) with butterflies when I saw him. My eyes twinkled with the look of love (which I'm told they still do. :) )

I felt understood. I felt safe. I felt loved!

I hear women dating losers give the excuse that they don't want to miss Mr. Right. Well, in my experience, I have to say that if you truly follow after God and seek Him above all, He won't let you miss Mr. Right...even if you try. ;)   (But, be honest...Look for Mr. Right not Mr. Fixer-Upper.)

I know what it means to have someone who loves me even when I don't always love myself. I've told him numerous times that I'd rather be poor with him than rich with anyone else...and I mean it! Love is a priceless treasure...a value beyond measure.

I heard someone this past week say that they didn't believe in soulmates. Well, they are welcome to believe what they want, but as for me "...I found him whom my soul loveth..." (Song of Solomon 3:4 KJV)

Faith and Family...My Foundation....

I want my kids to learn from my failure

You’ve probably heard adults speak about what a good example their successes are for their children.

I want to not only be a good example in my successes but in my failures.
That’s right.  I want to be an example to my kids in my failures.

I’ve had various levels of success in my life.  However, I feel that the failures define who I am as much (if not more) as the successes.

One of the most recent failures comes to mind.  After working for many years to have a photography business (working, learning, practicing, etc), I realized that it was time to let go of that pursuit. 

I had to realize that the dream I had wasn’t consistent with the life I was living.  No matter how hard I worked, it wasn’t happening for me on a level that could be considered financially successful.  Life would consider that a failure.  In fact, in some ways, I consider that a failure.  I couldn’t find the success that I was looking to find. 


What could be a positive lesson from that?

1.  Don’t let dreams keep you from happiness.  Sometimes we focus so hard on attaining a dream that we fail to see the happiness that is already surrounding us.  Bottom line: I was chasing my dream and missing out on the happiness that was already mine.

2.  Quitting isn’t always a bad thing.  It is a much greater failure to continue on a path that isn’t good for you.

3.  There are some things more valuable than the world’s view of success.  I have refused to compromise my morals, principles or values to achieve success.  I have refused to compromise who I was to get where I wanted.  Getting where I wanted wouldn’t have been a reward if I had given up who I am.

4.  Sometimes what you want isn’t what is best.  Many times in life I’ve faced what looked like failure only to find out that it was just an obstacle removed in order for me to achieve something better.

5.  Hard work isn’t always the answer.  The world would tell you that if you work hard for something you will get it.  Some “religious” leaders would tell you the same.  If you don’t get it, then you aren’t working hard enough.  I don’t believe that.  Sometimes things just weren’t meant to be.  You might not see the reason at the time but you’ll probably be able to look back in the future and see the benefit.  I’ve been let down in my life by not having a door opened that I worked hard to open only to find out that the next door was something that I hadn’t even thought of and was even better!

6.  Everything costs something.  What are you willing to pay?  I’ve had opportunities where I could have pursued success more vigorously.  However, that would have meant giving up something that I wasn’t willing to give up.  One of the big things to me is family.  I wasn’t going to kill myself pursuing a business only to discover that I had lost all the quality time (weekends, evenings) with my family that could never be recovered. 

7.  Sometimes your plate is too full.  I found myself trying to be successful at so many things that I wasn’t able to give my best to all of them.  Teaching homeschool (with special circumstances), photography, theater, church obligations, studying/learning my daughter’s special needs and how to help by myself, being mom/wife/sister/daughter….It all became too much.  You need to know your limits.  In order to be good at anything, I couldn’t do it all.  I had to retire my Super Woman cape.  And I had to realize that was OK.  Being a better me was better for me.

8.  Always trust God.  When God leads you, go.  He always leads you the right way…even if you don’t understand where you are going.  He will give you the strength/skills/etc. to do what He needs you to do…and sometimes that isn’t what we are trying to do.


So, there it is. 

I was hoping that this post would sound more profound.  But it’s pretty simple. 

I want my children to learn that what looks like failure might be success and what looks like success might really be failure.

If I give up my family for personal success, I’ve failed.
My goal in life is happiness.  I’ve spent my entire life searching for happiness.  It just so happens that happiness to me is probably more simple than happiness to others. 
I don’t have to have the fancy cars, the expensive purses, the designer clothing or a big house.  I don’t have to have the titles after my name or the big paycheck.

I want love.  I want happiness.  I want to give my family the best of me…not what’s left over.  I want to be myself and be accepted for who I am. 

I value God, love, happiness, family and who I am.

If I can’t have these things, I will never have a success that is worth it. 

….And not one of those things can be purchased with money. 

Church and Special Needs: a personal perspective

I don't want anyone to get the impression that this is a "woe is me" post.  I wrote this to be educational.  I wrote this to be open.  I wrote this to give others a peek into my world.  I wrote this to make people think (because this has been on my mind a lot). 


-My Background-
I started attending Church services as a newborn (about 2 weeks old). I sung my first solo in worship services at age three. My sister and I were making regular appearances at local singings before the age of ten. I was leading our children's services by the age of sixteen.

Yes, I "grew up in the Church." Unlike a lot of teenagers/young adults, I didn't rebel. I didn't mind being a "good girl." I knew that having fun and being a Christian were not exclusive of each other.

That doesn't mean that my life has been easy. Far from it. I have had to face horrible trials and I've survived. But that's not the purpose of this writing.

I grew up with my Church family practically inseparable from my biological family.

I met my husband at Church. The first time he spoke to me was after a Sunday worship service...The first time he asked me out was after a Wednesday night Bible study. :)
(Side note: I was also a blonde for the only time in my life at the time...but that's whole 'nother story...lol!)

I said all that to set the tone that God has always been an essential part of my life.

-Something Different-
We noticed that there was something different about our youngest daughter from a young age...but then again, I'm different. Before she entered school, the learning differences surfaced. We struggled to find out what we could do to make things better for her. We went to doctors, had testing/evaluations and ended up discouraged. We picked ourselves up and took control. Learning ourselves (reading books, talking to parents, talking to educators)...Finding any open door that we could find for every door that closed. We've had to trust in God to guide us through this journey because we know that He can and we aren't finding any help elsewhere yet.

Ironically, the one area still seems to allude us to an extent is somewhat considering our situation.  We've always wanted to be involved.  Warming a pew has never been our style.  However, when we gave up our "working" roles to deal with our family needs, we found ourselves feeling lost. 

-Church and Special Needs-
I've been researching the Church and special needs families. Did you know that a large percentage of special needs families do not even attempt to go to Church services? There are serveral reasons for their absence. I'm not going to give you my researched reasons. I'm going to write from the heart. I looked for answers and I haven't found them yet. So, I'm going to share some of the struggles that you don't see.

*Church services are very hard for my child to understand. My child is very literal. My dad once made the comment that he was ready to "hunt down" some food. My daughter was quick to inform him that she didn't want to go hunting. Familiar figurative language make no sense to her.

*My child doesn't understand social graces. We've tried to teach her but with limited opportunies to practice, it's hard. Since it's difficult for her, which means it's difficult for others...hardly anyone tries.

*My child doesn't play well with others. Actually, that isn't fair. She doesn't NOT get along with others...she just needs them to come into her world. And most people don't. When she was little, I felt judged by other parents. I felt that they were judging the way that my daughter didn't participate in certain activities. I felt that they might feel that I was the keeping my child from participating. The truth is that I tried to include her. I tried to help her find a place. When she can't find a place, she'll come to (or stay in) her safe place...Me.

*My child doesn't shake hands. It gets tiring to explain some of her "quirks" like the fact that she doesn't touch hands with people outside of family. That seems simple enough but it's very uncomfortable for us to constantly explain. We don't want others to think that our daughter is being rude...so we keep explaining. (And, thank you to those who have learned and don't try to shake her hand! :) )

*My child doesn't pay attention like your child does. My child can hear without looking. Eye contact is difficult for her and that applies to staring at a speaker/preacher too. What we see as proper behavior is something uncomfortable for her. While we do work on eye contact, it really isn't necessary in her mind. Once again, we don't want our child to appear rude, but what makes sense to you doesn't make sense to her.

These are just a few of our small struggles.

-What I'd like you to know-
Now I'm going to tell I wish I could tell you.

*We are a normal family! While your version of normal is right for you, we live with our version of normal. We love...We laugh...We cheer each other on. We do things similar to what you do...just in a different way.

*We are friendly people so you can speak to us. Yes, people will sometimes look at us but never say a word. Yes, we may have our minds on keeping everything together but we don't mind if you interrupt. If anywhere we should feel the love at church services, but sometimes all I feel is lonely.

*Some days are better than others. Some days my daughter is more at ease than others. These days she will respond when spoken to and she may even carry on a conversation about something that she enjoys, like animals. Other days she won't even speak to us much at all and is almost totally withdrawn. These are the hard days. These are the days when I work to bring her out of her shell. (Sometimes it works. Sometimes it doesn't.) If you don't have contact with her, you'll never know the difference.

*We are parents too. We are proud of our daughter. We think she's one of the most beautiful people ever created. We see a side of our child that not everyone can see...and we know how great she is. We want our child to be appreciated for who she is! We go through parental ups and downs. Parenting a child with special needs doesn't make us simply a caregiver...We are still parents...And proud of it!! My child may not want to hop onstage and sing a song in front of the crowd but she has a heart that will show you an innocence and purity that makes my heart sing!

*We are people. We are individuals with individual interests and individual needs. Because most of our time is spent (especially mine) in dealing with our special life, that isn't all that I am. I enjoy creativity (photography, singing, acting). My daughter enjoys about anything to do with animals (particularly her animals, My Little Pony, Webkinz and last but certainly not least, Teenage Mutant Ninja Turtles). If you take the time to talk to us, you might find us to be nice people.

...which brings me to my next point...
*I'm not ignoring you. I just can't be "on" all the time. I am at a disadvantage in the first place being an introvert. I'm not accustomed to having to "lead" conversation. Add to that the fact that I spend most of my time living "in my daughter's world" in order to understand her, I feel somewhat lost in the real world sometimes. It means a lot when someone reaches out to me...so that I don't have to.

*I don't mind you asking questions. I'm guessing this one is something that differs in families but as for us, we don't mind the questions. The more you know the more comfortable you will be. I want you to be comfortable. I also want you to get to know the fabulous young lady who is my daughter. In order to see that, you have to find a "key." We had to work hard to find some of the keys but we are happy to share. It would be wonderful if the people around us could see what we see...but they can't without trying.

*Please don't pity us. Learning challenges are just that...learning challenges. Everybody has challenges in life. Ours may look different from yours but you have challenges too. When your mind is clouded with pity, you are focused on the negative. You can't see our happiness...our love...our victories...the beauty and innocence of a child who thinks differently. From a very personal standpoint, we consider ourselves blessed. While the challenges are difficult and quite often exhausting, the rewards are wonderful too. Unfortunately, few people get close enough to share these with us.


-MythBuster-
Now I'm going to destroy a myth...
The Myth: We want to be left alone.
I have been to events where I could count on one hand the number of people who spoke to me. Even though I was surrounded by a large group of people, I was only acknowledged by a few. It was almost as if they didn't want to interrupt. One instance was on a day when my daughter was having a withdrawn day. I was doing my best to get her involved with the activities but it wasn't working. I was struggling emotionally. Yet, almost everyone around me did nothing. I felt pretty much invisible (which is a horrible feeling by the way). I finally started walking and talking with my daughter away from the crowd allowing my hubby to socialize. After a short time, my hubby noticed and we ended up leaving early.
I get it. It was an awkward situation with everyone having fun and me intently trying to get my daughter to have some fun too (or at the very least, come out of "her world" for awhile). Yes, that meant that I wasn't paying attention to those around me because I had all I could handle at the moment. However, did anyone stop to consider that I might could have used a friend at that time? A kind word would have acknowledged my presence and let me escape my struggle even if only for a moment.

-Be Love-
It's normal for most humans to walk away from that which is different.  I've spent my entire life watching people walk away.
However, the Church  is called to be the messengers of God's Love on earth.  It amazes me how often the Church looks outside for opportunities to minister to others yet totally ignore the MANY needs of those in their own congregation.  Of all places, surrounded by God's people should feel like a blanket of support, understanding, love, caring...




I started this off about Church but a lot of this could apply in general. There are many special kids out there with special parents who give so much to make sure that these special kids have find their special places in life. In fact, EVERY child is special.  They all deserve LOVE!

Year End Review

[I’ve written something for this post several times.  Each time I end up trashing it.  Hopefully, this time will work for me.]

At the end of every year, I review the year…what went right…what went wrong.  So...Here goes... 

HEALTH
This year started off heavy.  The negativity of the past several years had gotten me into a very bad place.  My health was paying the price. 
Having PKD (polycystic kidney disease), stress is a major negative factor.  I’ve endured too much stress over the previous few years and my body was telling me.  When my health took a major downturn early in the year, my doctor had to increase my medicine dosage (keeping my blood pressure low normal to protect my kidneys from damage in that area) by four times!  That was a wake-up call for me.


LEARNING CHALLENGES
I’ve been very open about my youngest daughter’s challenges with learning.  In 2013, her social challenges began to be even more noticeable.  I was at the point once again where I had to find another key so that I didn’t lose my daughter to her world of isolation.  We became very educated in the area of Autism/Aspergers Syndrome.  Unfortunately, the medical community (except for a late night conversation with a wonderful doctor off-record) has been basically no help.  At the end of 2014, we still have even gotten an appointment for testing which we were told was requested in August...but I have educated myself and I am actually growing closer to my daughter. 

My youngest daughter on the day that she was recommended for testing in August.  We were given hope...

DIET
Next there was a photo.  I posed for a photo with my daughter before she left for the Father-Daughter Valentine’s dance.  I was sickened by what I saw.  Granted, I had no makeup, unfixed hair, sloppy clothes, the need of a shower and had just completed hours pampering my daughter to get her ready (in addition to a furiously fast moving photo shoot….her patience with the camera is short) but I looked awful!!  What I saw was a pale, unhealthy, unrecognizable version of me.  Not to mention that I felt bad.

One of the better photos of me that day.

That picture and my weight at the doctor’s office set me on the path of health low-fat diet, which helped me shed a few extra pounds and add some color to my face again.  In addition, I eliminated every stress that I could in order to get my body and mind in a better place.


PHOTOGRAPHY
I stopped doing photo sessions for others this year.  Even though we knew it would create a financial burden, I realized that I was working to much for too little.  As a business person, I knew that my dreams in photography were no longer a good investment of time/money.  Sometimes reality doesn’t agree with the heart.  :(

I briefly pursued stock photography.  However, I quickly discovered that I was not having success there.  So, I chalked that one up to an interesting failure.

THEATER
After finishing up 2013 on a theatrical high with SPAC’s production of The Best Christmas Pageant ever, I had to take a break from theater.  Unfortunately, financial and health reasons prevented me from doing what I love.  I have to admit I miss the stage!!!


RELIGION
God has always been a huge part of my life.  In 2014, we left the congregation that had been our home for years and visited a few other locations.  We were actually analyzing our daughter’s reaction to other places.  We hoped to confirm (or deny) whether or not our daughter’s social issues would change with location.  In the end,  she was consistent and she chose to go back to our original congregation.  We finished up 2014 doing the Christmas program together.

Christmas program (Strangers at the Inn) photo taken by my mom

FAMILY
I always enjoy family bonding time.  With so many distractions gone and working together to face the year’s challenges (financial, health, learning, social), we were able to nurture our family bond.

One from our Christmas card photo mini-shoot

When everyone else walks away, those who love you will be there!


HOMESCHOOL
We finished up 5th grade with better learning focus (which was a great thing!).  In August, we started 6th grade in our newly designated classroom.  Then we had a place for our school stuff that we could shut the door on and walk away.  It helped give us some separation.

I was a little overambitious as we started off the new school year but quickly noticed the issue and revamped our schedule.  My daughter reacted positively.  We ended this semester with some very good improvements!

One field trip was to see this WWII ship.

PETS
We lost our beloved 16 year old lab mix (my hubby’s dog before we were married).  That was tough.

"Saying Goodbye"

We added a rescued kitten to our household, Tinker Belle (or Tinker the stinker, as I like to refer to her…heehee).  I  can’t help but smile when I see her tongue-out happy face!

Tinker being Tinker :)

We gave lots of affection and received a lot in return.  Where friendships have gone away, our dogs are always there to make things better!

Halloween family pic

CONCLUSION

Well, there it is.  My year in review. 
While it was a rough year in some ways, it was a great year in other ways.

What made for a Merry Christmas for me ~ Loved ones all together...and having fun!

Here’s to saying goodbye to the negative parts of 2014 and adding to the positive ones in the new year.

The Monster that Haunts Me

It's been over three months since I once again was told that my daughter was recommended for special testing. Once again, I wait. You would think after over six years of this ongoing battle with the medical profession that I would be more used to things...but some days are harder than others...

Today, I reread her initial testing report...

Back in 2007, my daughter was given an evaluation which was done a few days before her sixth birthday. After a whole day of testing, the diagnosis was one that I knew was far from correct. I was disappointed beyond belief. I had reached out for help and had received an improper diagnosis with a recommendation for me to start my daughter on drugs. I had already been disappointed by the coldness (and, dare I say, bullying behavior) of the public school system. Now I was given a diagnosis that it didn't take a fancy degree to know was not correct. When I reread the initial testing report, I see many red flags in addition to pure inaccuracies. What horrible evaluators! How fortunate my hubby and I were to not just blindly accept what we were told.

I reread her initial testing report...
My daughter was disappearing before my eyes and this was the best they could do! I was mad. I was hurt. I was disappointed. I was disheartened. I asked for help and I got less than nothing!


I reread her initial testing report...
...for months. I was so blindsided by such a wrong diagnosis from the people who were supposed to be professionals. It took me months to finally present the report to my family physician. She was as confused as we were. She said that we were right not to act on that evaluation since it was absolutely not right. She introduced us to the world of dyslexia and recommended her for evaluation.


I reread her initial testing report...
...and then looked at dyslexia. I cried. I saw her symptoms all over the place. After weeks of trying to get her in for testing for dyslexia, we were unable to get an evaluation. The insurance didn't cover the cost and the testing was expensive in addition to hours away. We were unable to get the testing that she needed.


I reread her initial testing report...
...then put it away to concentrate on dyslexia. I learned everything I could get. I talked to parents and teachers of children with dyslexia. I took all the advice and knowledge. I confronted her challenges fiercely. I was not going to give up.


I reread her initial testing report...
Something still wasn't right. In fact, some things that had always seemed quirky were now becoming obsessive behavior. Why is she always so distant? Why doesn't she want to relate to others? Why doesn't she liked to be touched? Why am I being asked by people if I had considered autism?!



I reread her initial testing report...
I don't know why.  The feelings of anger, disappointment and everything else come rushing to the surface. It's always so raw.  Why do I do that?  Why didn't they see anything strange?  They were supposed to know.  But they didn't...


I reread her initial testing report...
I appease myself by noting that things have only gotten worse since her initial (and incorrect) diagnosis. Perhaps they needed it spelled out more clearly as it is now.  I remind myself that I have gotten no help at all so far.  I question whether or not to ask again.


I reread her initial testing report...
They were WRONG!  So why do I keep looking at this evaluation?!  I need answers!  I need the TRUTH!


I reread her initial testing report...
There is so much that is wrong with it.  I can see my daughter with my eyes.  I have researched enough that I am convinced that I know what we are facing now.  Should I say anything or not?


I reread her initial testing report...
Her evaluation is SO wrong that I need more answers.  I need to have something that is right.  I need to be able to work with a real diagnosis.  I need this.  I need help.


I reread her initial testing report...
I have been disappointed, yet again, by the medical profession.  My family doctor has recommended another evaluation. This time it's for ASD (autism spectrum disorder/aspergers syndrome). She seems taken aback by the symptoms that are now so glaring.  But that evaluation has yet to come.  It seems no one cares what is challenging my family.  I've given up my job, my hobbies, who I am, everything I can give up to devote myself to understanding her...yet the professionals continue to turn away.  This little girl that I have fought for so long is now becoming a young lady.  I want to enjoy my daughter instead of constantly fight on her behalf.  Sometimes I am mad that I have to do everything by myself.  I had to study her behavior, assess it, learn teaching skills to help her and apply them myself.  I know her so well at this point that I could disappear into her world and never come out...or so I feel some days.
My faith is shattered.  My trust is all but gone.


Today, I reread her initial testing report...
Why, oh why, do I torture myself!!!  The emotions are always the same.  The result is always the same.

I scold myself for reading it again.
I am disappointed in myself for letting it make me feel bad.
It's not that I can't do it by myself.  I have the inner strength to know that isn't true.  I am a force!
It's that I feel that it would be easier if someone with more experience would lead me.  Sometimes easier would be nice.

I want it to go away.
I want to know the joy of having the support of the medical community.
I want to feel that I'm part of the club not standing on the outside.
My silent cries for help unheard.
I want someone to hear my voice!!! 



Today, I reread her initial testing report...
I tuck it away.
I walk away.
I pour my feelings into this blog post.



I will not be controlled by that which I cannot change.
God has promised that He won't give me more than I can handle without his help.  Apparently, He's putting a lot of faith in me and Him!  I should too! :)

And, so, I go back to my life, put my trust in God and leave the nightmare behind me...once again.