Transparent

Tuesday I will add a new title to the many "hats" I wear.  I admit that I didn't plan on EVER wearing this hat.  But keeping in step with all the life changing things that happen to me...it CHOSE me.  Tuesday I will become a HOMESCHOOLING mom.  Mark and I were really praying about and researching homeschooling for Grace beginning next fall, but situations be as they may...a change was needed now.  So...here we go into uncharted territory.  Truthfully I am nervous.  Not that I can't teach her.  She loves the work, and will sit with me until I need a break.  Just nervous to catch her up.  To make up lost ground.  To reteach and make progress at the same time.  She is a year behind in her classwork and reading.  Grace is also struggling with symptoms of her obsessive compulsive disorder.  Once things settle regarding her schooling, I am going to pursue art therapy for her as recommended by Luke's therapist.

Grace will be attending a 2nd grade classroom for two half days a week at our school districts alternative learning school called Evergreen Flex Academy.  She could stay the full day (twice a week), but she just isn't ready for that yet.  We will see where she is next fall.

My heart breaks for how much she has been struggling in school.  I am also disappointed that staff never told us about her struggles until we questioned them.  We spent time talking with Grace's teacher, and she agreed that Grace needed more help.  I have had Grace tested for special education services but she was not low enough to qualify for any extra help.  Luke and Grace have reported that several other staff members (neither of them work with Grace) at the school questioning them about our decision to home school her.  I find that very unprofessional as Luke and Grace do not know the full reasoning surrounding the decision.  I promptly informed those staff members that if they have any questions regarding our decision to home school that they could please contact me and then gave them my cell phone number.  I would be happy to discuss it with them.  I think that shut them up, as I haven't heard from them.

As an educator myself, I understand how some teachers feel about home school and public school.  What I have learned as a mom and a teacher is that not every student is going to learn the same way.  Not every child's education is going to look the same way.  Our decision to home school is based strictly on what Grace needs, our desire to see her experience academic success and thrive in an environment that supports her. 

Here is the transparent part of this post...I feel that I have too much going on in my life.  That I am being pulled in too many directions.  That I am wearing too many "hats".  This leads me to feel not effective in anything.  I am on the brink of burnout.  The last month I have really had to take a step back and figure out what is most important, because what I have realized is that I CAN'T have it all like I thought (see previous post).  I've learned and am still learning some really difficult lessons. 

I have issues with needing "titles" to feel like I have value.  Stupid...I know.  It's just the truth.  We've probably kept our foster license too long because I didn't want to "give up the title".  I went to work this school year for a lot of reasons but one was for the "title" and the badge.  In a way, looking at my picture on my badge that said "staff" made me feel like my schooling and hard work had value.  That I had accomplished something.  I went back to WSU because I wanted the "title" that goes with the finished the product. In hind sight all these "titles" have cost me too much.

In this past month we decided that we are handing in our foster license.  We will NOT renew.  It is time to "let go".  This has been a difficult decision for me to process.  I wrote notes to each of my favorite social workers Peggy and Beth telling them our decision.  Both of these women were instrumental in helping me become a mother.  How to you thank them for that?  I tried.  I admire them and the challenging work they do.  They loved my children before I did.   They changed my world.  I hope they know how much I love them and miss working with them.

I stopped teaching the preschool class at church.  Too much preschool can wear a girl down.  I said no.  I may or may not continue with WSU.  I am still thinking about that one. 

And on to work...hind sight is 20/20 right?  I probably knew I shouldn't have decided to work on August 24th, 2012.  This was the day I found out Bella had delays and was going to need therapy.  My heart felt like it was ripping from my body.  I knew that she would be with her dad, but here I was going to go off to work to help special needs children and my own baby was diagnosed with special needs.  I ended up in the ER that day hooked up to the heart monitor because I was having heart palpitations.  I was stressed, anxious and I hadn't even started working yet.

When I started working I found out that my 20 hours a week job really was going to take more time (25 hours a week) plus my hour commute, plus all the time working on things at home.  It was more than I planned on.  We have made adjustments, but I have a VERY high stress job, and a high stress job with my own children.  There has been a lot of stress!  Things have become clearer to me as Mark and I process them.  My first priority is my sweet little family.  They are a full time job.  My heart is with them.  For me...I have a difficult time balancing be a special needs mom and a special needs teacher.  I know there are many out there that do both and they have my admiration because anytime I try to both...I fail.  I am committed to finishing this school year and then re-evaluating.

The Honest Truth about Special Needs Parenting

I have cried more tears in this past week than in the last six months combined.  My heart is heavy.  Maybe I am just emotional, hormonal or overly sensitive, but I am concerned for my sweet Grace who struggles off and on with symptoms of obsessive compulsive disorder.  Her symptoms first appeared upon her entering kindergarten and have come and gone in waves over the last several years as stress and anxiety affect her.  Unfortunately, I believe this latest set of compulsive behaviors was triggered by my own personal stress and anxiety.  My kids are very "in tune" with how I am feeling and I have been "off" for awhile now. 

I have tried to pinpoint why I have been "off" why my stress is higher, etc., however, I look back and see no defining event.  Mainly I feel it is trying to manage everything, deal with everything  and hold it together for too long.  I feel burnt out.  I am run down.  I am tired.  I am depressed and anxious all at the same time.  I really believed that I could "have it all".  I remember saying multiple times as I began working my part time job, "I will have the best of both worlds."  Only what I have realized is it is NOT true.  We want our cake and to eat it too.  And I know that is me.  I took on too much.  I can't give 100% to my kids and I can't give 100% to my job and I can't give 100% to my marriage.  I am not excelling in anything...just treading water.  Enough to get by.  This is so frustrating for me.  I thought this job would be the answer to everything that burdened me last year.  It has only caused different burdens.  The job is stressful.   There are students with high needs.  I have been bit, scratched, hit, kicked, hair pulled out, things thrown at me, and have had both my cheek bones bruised.  I take on the responsibility everyday of attempting to keep all my students safe.  It is a big task.  I don't always win.  I have a huge feeling of defeat when someone gets hurt. It is a stressful environment.

This is one of those difficult life lessons to learn.  I was reminded of what my therapist said to me in the beginning stages of therapy in my post partum state.  She said, "you can do anything for five months and then you hit a brick wall.  You can push yourself for five months and then you have to make changes."  Mostly this was talking about my sleep deprivation but I found it to be true.  I added up the amount of time I had been working...yep...five months.  Five months of trying to convince myself that this is what I am supposed to do.  Five months trying to be happy imagining myself working in that classroom for the next 20 years.  Five months kissing my 2 year old goodbye hearing her say "no classroom mommy.  Stay me."  Five months telling myself she would be ok only to feel like my heart was being ripped out and my arm severed from my body.  Five months.  Now...brick wall.  But Mark and I are walking this hand in hand and praying about what the answer is.   

Grace's latest trials have caused Mark and I to re-evaluate her placement in school.  She is struggling academically and socially.  She understands that she is behind in areas, her peers understand that she is behind and they make sure to remind her any chance they get.  Grace feels beat down, unhappy and self conscious.  It is interesting to me how just a month ago I spent all this time researching school options for Luke, but now I am using all that information for Grace.  I am glad that I did my homework.  Grace's last day at her school will be on Thursday.  She will be switching to our school district's alternative learning program.  She will go 2 days a week in a small classroom and 3 days a week at home with Mark and I.  We will also be looking into some art therapy for her, as recommended by Luke's therapist.  The last thing I need is another appointment, but Grace needs it and so do I.  I honestly do not know how I am going to juggle even more.  My plate is already so full that things are dangling from it.  I think back...probably shouldn't have gone back to school, probably shouldn't have taken on a lot of things. 

So honestly...special needs parenting of three special needs kiddos is rough.  It is not pretty.  There is no magic over here.  I am not a saint and fail daily.  It is ugly at times as far as the pain, sadness, grief and feelings of being so alone.  There are triumphs too, but right now I am in the trenches of some really intense parenting and it is difficult to see anything.  I think of Dory in Finding Nemo....just keep swimming, just keep swimming, just keep swimming, because my friends all I am really doing right now is swimming...somewhat.

Processing

"The most consistent predictor of a child's success is the active involvement of his parents." ~Christine Yoshinaga-Hana

My kitchen is in shambles, the floor need a good sweeping, laundry folded and put away, lunches packed...but here I am typing because I need to PROCESS.  It has been another whirlwind weekend.  But like always... I am trying desperately to keep up, or just keep my head above water.  I am trying to PROCESS what schooling options for next year are available for my kids, specifically Luke. 

In response to the school districts latest IEP for Luke, Mark and I have decided that instead of "fighting" the system, we believe that there must be a better schooling option for Luke, and Grace for that matter. We feel like we have been fighting the school system for several years, and it really isn't worth the effort.  We.are.done. 

My whole way of thinking is challenged.  I had faith in a system, in a process that I believed would help my baby boy.  The system that would "get him the help and services that he needs", or so I was promised by special education staff in late 2010.  I don't know if I was so exhausted from a new baby and all these new symptoms and NO explanation (2011 was my year of discovering all of Luke's new medical issues) BUT I believed the special education staff at BBC.  AND the part that made me feel secure was the fact I was trained as a special education teacher.  I figured they would want to make the "special education teacher parent" happy and Luke would be "taken care of".  This has not been the case.at.all. 

My sweet little Grace falls into another great place in public education. Do you hear my sarcasm??? She is low enough in subject areas to be behind, but not low ENOUGH for them to do anything about it.  As an educator this is the most dangerous place for a student to be in, and it is the easiest for teachers to overlook and not "address."  I feel as though I have been fighting for anyone to pay attention to her and her needs since she was two. 

Ok...so enough pity party.  Mark always tells me 10% on the problem and 90% on the solution.  SO....here we go.  As I see it...I have 3 options for schooling Luke and Grace.  First private school, second homeschooling with community programs/classes and third transferring to a different school with the school district.  Here is where I am at with the different options:

PRIVATE SCHOOL...I have currently toured 3 different private schools. I just want to say these are all great schools with great programs.  However, when looking at these schools, curriculum and academic programs, I am parent looking for something DIFFERENT than most of their families that attend these schools. And that is ok.  Luke really does not "fit" the typical student mold at all.  My main questions are about accommodations, how the school handles bullying, curriculum used, modified homework assignments, their policy for a student missing some school due to medical and therapeutic appointments.  The first school I looked at is very academic and I feel wouldn't be the best fit for Luke or Grace.  I think it is excellent to push kids and achieve great academic success, but that is just not where my kids are. 

Another school told me that I would NOT be ALLOWED to register Luke at their school until I provide a copy of his IEP and have their support teacher review it.  After the review, they would let me know if Luke was ACCEPTED or REJECTED.  This left a bitter taste in my mouth.  They call themselves a Christian school yet only allow in CERTAIN students.  I do understand it...well sort of.  Some accommodations may be too difficult for teachers to make.  Yet...here is Luke...a child that would benefit from a Christian environment yet he has to be deemed "ACCEPTED" to their standard.  Doesn't seem quite right.  Here I am pleading with them, begging them to let me pay 5,000 plus dollars a year for him to be in their school and "they will get back to me in a couple of weeks."  The tears rolled down my cheeks ALL THE WAY HOME.  I was praying "God, why does this have to be so difficult and painful.  You created Luke, you gave Luke to us.  I am trying my best to raise him according to Proverbs 22.  Train up a child in the way they should go...Lord, the Christian school doesn't even seem like they want OUR Luke."  Sadness followed by anger followed by grief followed by clearing my head because the next day I had ANOTHER school to look at.  There was no issue with this school accepting Grace.  I could register her if I wanted.

The third school was opposite in almost every way to the previous school.  It felt homey and welcoming.  As the tour proceeded I began to open up about Luke and Grace and our life.  While I was talking with the gal giving the tour, I noticed a boy (about Luke's age) working with a one-on-one in a large room.  From my background I could tell he had special needs.  I thought this was VERY interesting.  I LOVED that they were including kids with special needs.  I saw the small class sizes, the kiddos interacting with the teachers and extra parent help. They run background checks on all the parents so they can all help.  I talked with her extensively about Luke.  It was a breath of fresh air to hear that they would accept Luke without needing to see his IEP.  They believe in individualized instruction for all their students and that students grow and learn at their own rate.    YES...YES I thought to myself.  When I got home I began reading the school handbook.  I will have to be doing some emailing tomorrow to clarify a few things.  Not certain how flexible they will be on their rules.

This week I will be looking at the homeschooling community/classes in the area.  More specifically Evergreen Flex Academy and River HomeLink.  This will give me an idea of programs available should we decide to go down that route.  My main concern regarding homeschooling Luke or Grace is the fact that I would need a break somewhere in the week.  I LOVE them so much, but being a good mom means I have to meet my needs too.  Whether it was visiting Grandma or fun classes or sports etc. there would have to be a built in break for me each week.  Just being honest. Also, if we chose to homeschool one child we would send the other to private school because we have learned we HAVE to keep the peace.

The final option would be to transfer the kids to another school within the school district.  I would have to apply for a boundary exception and wait to see if we were approved.  Maybe a new school with a new special education staff would be more invested in Luke.

My final thought in this whole school debate is preschool.  I thought for sure I wanted Bella to go to preschool but now I am not so sure.  There is no written rule that says she has to go to preschool at 3 years old.  Just not sure of anything anymore.  :(

Anyway...the reason for all this school talk believe it or not is that registration for all these schools (private and preschool) begin in Feb.  CRAZY!  If you want your kids to have a spot you have to register SOON. 

Praying for direction and having faith in the journey,
Carissa :)

A Day In The Life Of....

Today is Wednesday.  It is possibly the most difficult day of the week for me.  Wednesday is a LONG day.  My largest group of students come to class on Wednesday.  Our special education staff weekly team meeting is after class, so I remain late at work.  Luke and Grace get home early because of early release, then therapy, then the nightly routine (homework, dinner, bath, bed time).  Mark works on Wednesdays so I am solo.

My class begins at 8:30am, but my day began much earlier than that.  The clock read 5:47am when I heard the cries of an almost three year old.  I can barely manage to write that she is almost three years old.  I am living in denial!  Except for a slight creak in the floor boards, the house is silent as I tip toe into the the girls soft pink and blue room.  My almost three year old baby is standing up in her crib, hair tousled about, her fluffy pink blanket in hand, sucking on her pink binky (yep she still has her binky, cause I am a good mom like that). 

"I need you," she whines to me in the dark.  "I need you too", I whisper back.  I plop her into bed with Mark and I, situating her right in the middle, hoping I can rest my eyes for another 30 minutes.  She instantly rolls over resting her head next to mine and patting me on the arm.  Her little cartoon character voice exclaims, "I need apple juice, now!"  My groggy voice corrects her, "I need apple juice PLEASE," I say with an emphasis on the PLEASE.  Mark is snoring unaware of my early wake-up call.  I try and rest as I watch the minutes tick by on our digital clock all the while being kicked and pushed by an alert toddler.  I am up by 6:15am getting ready for another day at work.  By 6:30am, Luke has made his way out of bed and attempts to startle me like he does every morning while I am putting on my make-up.  7:00am rolls around, and I wake-up Mark and our sleeping princess Grace, who mumbles something and rolls over with the covers over her head.  I hand out clothes, pack Luke's snack and quickly fix the girls hair and say my goodbyes.

By 7:30am, I am in the van driving to work.  I commute 30 minutes each way to work.  I don't mind the drive though.  It is quiet.  The road is mostly freeway and there is NEVER any traffic. 

I enjoy the hour solitude 4 days per week, and I have recently discovered books on CD at the library.  I remember as a young elementary school girl enjoying when the teachers would read aloud from a chapter book in class.  I would always feel a twinge of disappointment when they would put the book down.  The books on CD are much the same way.  I think I could listen until the entire story was complete, but the day must go on.  Right now I am listening to The Help.  It is 15 CD's long.

When I arrive in my classroom at 8:00am, I know the half hour prep I have will be over quickly.  I begin by taking down the chairs, setting out entrance activities, turning on classical music.  I head to the office, which is a walk through the buildings (my classroom is in a portable) to check my box and say good morning to the office staff.  There is the usual chatter from teachers in the staff lounge and smell of warm coffee.  As always I check the counter area that is designated for free things teachers are giving away.  Nothing of interest today.  I have acquired a few posters and couple of books.  The principal is in the office this morning and I say a quick hello.  When I return to the classroom, I open the sensory table, scan the classroom to make sure I am satisfied and conclude by putting the baby gate up at my desk.  Ahhh!  The world of special needs preschoolers.  They have curious minds and most of them want to play on my computer.  The gate does a great job of keeping little hands from reprogramming. 



Our day is filled with the same schedule we repeat over and over.  I always feel blessed when we are able to go outside.  Even though it was cold today, I promptly had their coats on for our 10:00 date with the playground.  I enjoy watching them run, swing and play.

Later that morning the students work at the table.  Today our skill practice was cutting and gluing.  I was feeling particularly brave today allowing them to use the white glue and not the glue sticks (less mess).  I have learned that sometimes the mess is good.  The learning is really in the process and not the product.   There were many puddles of glue in our process today. 

There is ALWAYS a mess of toys EVERYDAY in the classroom!  This picture shows the mess 9 kiddos can make.  Gina, my instructional assistant and I pick up this mess Tuesday through Thursday.  We should earn an award!  We laugh a lot.  You have to, or you wouldn't make it through the day.  Gina says, "We need a new piece of tape for the light switch." To that statement I reply, "OK, I will get a fresh piece."  We both laugh at that exchange of conversation.  Who says things like that in their job?  Well I guess we do!





  

I can't conclude my day at work without mentioning how tough the work is, but how rewarding it is also.  Just looking at this little one reminds me how far we have come, and how much farther we have to go.  

After class is over, we hurry to pick everything up.  Gina blazes through clean up, while I am a bit slower.  My mind now turns to our team meeting we are about to have.  Usually it is held in the conference room, but not today.  It is being held in my classroom.  The team begins to arrive (school psychologist, occupational therapist, other special education teachers) and I once again apologize for the smallness of the chairs (preschool).  The meeting ends at 1:15 and I quickly email a parent.  It is 1:25 and I am finally headed home.    

Luke and Grace are already home by the time I walk through the door.  Wednesday is their school's early release day.  I quickly switch gears from teacher back to mom.  I survey the house, kids and Mark.  I make mental notes.  Grace still has that nasty cough. I don't think she is going to school tomorrow.  Bella needs a bath, dishes need to be done.  Thoughts run through my head: there isn't enough time in the day, why can't I be more on top of things. I am tired and I still have half the day to go.  At 3:30pm we head out to the van.  I drive to downtown Vancouver and escort Luke to therapy.  Family Solutions is the name of the counseling center.  I park the van happy that I remembered to bring parking money for the meter.  Luke and Grace fight about who gets to feed the meter.  They each get a coin.  We walk to the building and take the elevator to floor 2.  Mr. M greets us and I explain that with Grace's cough we are going to wait in the van and not the waiting area.  

  There is a cute organic tea shop next door and the girls and I pop in for something warm to drink.  Grace chooses a hot chocolate.  I scan over all the tea choices wishing I had the luxury to really read about them all.  I quickly pick "orange blossom" because I don't want Bella to get into everything.  Bella finds a juice and they each pick out a cookie.  I order a cookie for Luke too because he would insist "it wasn't fair" if he didn't get one.   



At five to five we pick up Luke and walk back to the van.  I buckle up Bella in her car seat, walk around to the driver's seat, turn the car on and blast the heat.  It.is.cold.  I take a different way home to go past the library.  I have a couple of books to return.  We finally pull into the driveway at 5:30pm.  I walk into the kitchen and begin preparing dinner.  The kids start their homework. It is loud in the kitchen.  Kids are arguing over something, Bella is whining for juice or fruit snacks or a banana.  She will just keep asking till I give her something.   

   Dinner is over and the homework is done.  The kids put there pj's on after the sixth time I ask them.  I pour two medicine cups of children's cough and cold medicine.  Bella throws herself on the floor because she didn't get any.  Luke gets out his eye drops and they both pick a snack.  They are finally in their beds.  Prayers are said, hugs and kisses given and their eye lids are heavy.  So are mine.  In just a few short hours this crazy will all start all over again.  And you know what? I am exhausted.

  

Sight

Luke had an eye appointment this past week.  We have been through so many of these appointments I have since "let go" of the worry that occupied my mind preceding each Casey Eye appointment.  Previously I spent a year gripped with worry and fear over "what exactly is wrong with Luke's eyes."  I wanted an answer, a definite diagnosis, and a three step plan on we were going to fix it.  None of my wishes ever came to be.  The only answer given was Luke has "childhood onset glaucoma".  There was no explanation of why he was losing his sight so rapidly. Test after test would come back with no explanation.  Meanwhile, I would become more anxious and fearful. I was "willing" there to be an answer, anything concrete that I could hold on to, google and fix. No answer would come.  In the last 18 months, I have learned to exist with an unknown. 

 

This past week he had ANOTHER series of tests.  Eye pressures, digital photography, dilation of eyes, visual fields...the whole gamut.  The doctor was so pleased with the results of all said tests and claimed Luke's successful appointment a "late Christmas present" in her Australian accent.  In the last 18 months, Luke has NOT lost any more vision!!!  His eyes remain STABLE!  Victory for this mama.  An everyday MIRACLE nonetheless.  Luke is a RARE case and therefore despite the INCREDIBLE news, will continue to be followed VERY closely.  More eye drops, more appointments, more eye pressures, more of the same course we are on.  But I walk on, with this victory under my belt, a smile on my face and the realization that I am holding hands with a MIRACLE!

Fourteen!

 Dear Mr. Dahl,
It is difficult for me to believe that we were this young when we got engaged (you...19....me just barely 19)!  We were practially babies!  I thought I loved you the most a person could love someone then.  Ahh but now...that love, that young love we had, has grown into a deeper love.  A love that only time, triumphs, and trial can grow.

 And oh how we have had our share of experiences, life adventures, triumphs and tragedies.  Life has not left us untouched.

 14 years ago this was us...saying "I do" and uniting together, to take on the world...so to speak.  Oh the places we have been and the places I am sure we will go.

 How I wish our 14th was celebrated here....

 but more than Disney...celebrated here....together...

Someday our time for celebrating anniversaries sans children will come, but not today...not our 14th.  It was marked by work, therapy, dinner, baths and Wii Just Dance performed by 3 children (which remains to be the funniest thing I have seen in a LONG time).  14 was celebrated by delighting in caring for the 3 little people that we were incredibly and undeserving of.  Happy 14th Anniversary Mr. Dahl!

I love you more today than 14 years ago!
Simply stated you are my everything.
God math...1+1=1 
Celebrating 14 years of markissa.
Love you,
Me

Pain & Tragedy

At 7:30 Wednesday morning, Mark and I were deep in conversation with our two oldest.  We knew they would be going to school.  We knew that others would be "talking about it."  We just wanted them to hear it from us first.  "Remember the mall that has the Disney Store?  Remember the mall where we go to dad's favorite store REI? Remember where we get the yummy lemonade and the pretzels?  Something really awful happened there yesterday.  A man with a gun went into that mall, into the food court and started shooting his gun.  He killed 2 people and himself.  It is very sad.  I just wanted you to know because kids at school will be talking about it and we want you to know from mom and dad." 

Growing up...I never heard a conversation like that from my parents.  My kids are growing up in a completely different world than I did.  It is scary.  I worry.  There are more questions than I have answers to.  Days like today, I feel deflated and defeated.  I feel that once again the "world" has left an imprint on their hearts and I am unable to erase it. 

Tonight...after the kids were tucked in bed and the house was quiet, I plugged in my ipod and started washing dishes.  And.I.cried.  The tears came and I let them as I recounted my day, my week, my last couple of months.  I AM TIRED!  Physically, emotionally, mentally...TIRED.  5 therapy appointments this week!  5!  In my mind I see three pairs of eyes that are looking at me.  I sometimes feel no matter how hard I try, no matter how hard I fight, it.isn't.enough.  And I so wish it was!

Luke had a therapy appointment tonight, and at the end of the session he gave me a paper about how he is feeling.  He would read a statement and then circle how it related to him (not at all, sometimes, often and all the time.)  The honesty and realness of my little boys' heart is amazing.  I read it sitting in the therapists office and bit my lower lip.  It was all I could do to keep from crying.  But with 3 little pairs of eyes looking to me, I held it together.  Can anyone answer me this....why is the world so cruel?  Why are kids so mean?  Why do they constantly pick on those that are different? smaller?  less than them?  It PAINS me on the inside that Luke now realizes this.  He knows he is different.  He knows he is not like everyone else.  He KNOWS the very things I have tried to protect him from.  I FAILED.  I have seen his classmates in action and it is not nice.  There is little the school does these days.  Sure they have their little cute programs and rhymes about how to solve problems, but let's face it they are not holding students accountable for how they treat others. 

Grace feels the PAIN too.  She knows the things she struggles with.  She is already attempting to "fit in" so to speak.  She often will tell me everyone is mean to her at school.  She wants to wear her hair a certain way and her clothes a certain way and she is SEVEN!  I don't remember caring about anything like that at seven years old.  But the are constantly surrounded by it (TV, media, stores, the mall).  It is almost impossible to escape. 

Shortly after beginning this post, we heard of the shootings in Connecticut, at the elementary school.  Mark and I sat on the couch and cried.  This tragedy has moved me and has shook me to the core.  I told my mom it is like a double whammy for someone like me.  First as a mother of young children.  Some of the victims were seven years old.  Grace is 7.  It took everything in me not to go and pick them up from school on Friday.  Oh...and letting them go to school on Monday...that was even more difficult.  Then I am a teacher, at an elementary school.  I sobbed Sunday night to Mark that I was scared.  I am trusted with the precious lives of preschoolers.  It is an scary feeling to walk into the office or past the Principal's office or past the first grade classrooms without thinking about "what it must have been like."  It.is.horrible to have those thoughts in your place of work.  But I am reminded that we cannot live our lives in fear.  We cannot cower away from living our lives, of going to school, of shopping in a mall.  We must remember how precious this life is, to reach out more, to connect with others more, to hug our children a little tighter and a little longer and to pray for PEACE for those that have suffered such unexplainable loss.

Down Syndrome

Raising special needs kids is a whirlwind, a roller coaster, a journey.  I am learning more and more that it is an adventure that will most likely never have an ending point.  I will never come to a time where I say "this is it!  I have figured it out!"  This past week was no exception to that thought.  It was a ROLLER COASTER!  I am always "attempting" to find some sort of balance, peace, fairness,...unfortunately in a world that is not fair, or peaceful and at times very unbalanced. 

It was a typical Wednesday before Thanksgiving...last minute meal prep, a trip to Fred Meyer, a 2 year old that wanted nothing more than to be held.  A 7 year old that marches to the beat of her own drum, and a 9 year old that we attempt to keep on some sort of schedule during "non" school days. 

That afternoon I went out to the mailbox and was greeted by a letter from the Division of Developmental Disabilities.  As part of Bella's IFSP, they had me sign paperwork to apply for DDD services because she has a documented developmental delay.  I was shocked that the letter said that she was eligible because her delays are not that severe.  I read further into the letter and it said that she qualified based on the fact that she had Down Syndrome.  That is was documented by a physician.  It further stated that her syndrome was so severe that she couldn't participate in an evaluation and that she qualified for "Intensive Medical Home Care."  Basically nursing services.  Two thoughts ran through my head.  1) Some sweet baby with Down Syndrome got their paperwork mixed up with hers or 2) that the Infant Toddler Early Intervention is scamming a way to get more money.  I hope the first is correct.  Of course, on Wednesday before the holiday there was nothing I could do.  Even though I know that it is not true...to see her name at the top of this paperwork was really difficult for me.  I wanted nothing more than for it to reflect the truth.  I know in time it will all get sorted out, but in the meantime it was something that I just had to "let go". 

The next event that occurred was more personal for myself.  It reflects the challenges and struggles of being a mother of special needs children.  If you haven't read my honest thoughts on what it feels like to be a special needs mom read it here 5 Things About Being a Special Needs Mom. 

Church has been a difficult subject for me since my father passed away.  My entire life he was a pastor.  The Rev. Neal L. Nyhoff.  I imagined my entire life in his church.  My kids growing up, myself growing up.  But it was a dream that would never come to be.  Since 2005, we have been at Mountain View Christian Center.  It has been a good place to be.  My kids enjoy it and we have found a home.  I know though that it will never be what it once was in my dad's church. 

For two and half years, I have been with Bella at church.  She has been the only baby in nursery.  Her and I have spent almost every Sunday since she was born together in church.  One because the church is small, and two because of her social delays and intense fear of being left by me.  It has been a good time together, but especially lately, it would be nice to drop her off in the preschool class and be a grown up for an hour.  I have been sensitive to her needs though, and have not pushed her too far.  This has meant that aside from me teaching her class one time a month, I do not have a ministry in the church.  This is difficult for me because in the past I have been very involved. 

I had talked with Mark about seeing how he felt about me being involved with the music ministry at our church once a month.  I was really excited about the possibility of ministering through music and getting a break from nursery duty. I didn't even care in what avenue I was used...piano, additional singer, special number...it didn't matter.  I stepped out and put myself out there...only to be disappointed.  They didn't need any help currently.  

Things are planned and I understand that.  I can only imagine that I don't look very committed to anyone at church.  They rarely see me.  But I am there.  I am sitting on the floor in nursery or preschool playing ball, or dolls with a 2 year old that has social and sensory delays.  Or I am sitting in the van with one of my older children that refused to wear their shoes, or had a melt down previous to coming to church. 

I know that I am not punctual for church most of the time.  We often blow through the door 5 minutes after church begins.  And I can see how anyone can think "hey...if they can't make it to church on time...I can't count on them for ____________(insert anything here.)  What they don't see is the intense choreographed dance of getting my kiddos dressed, eating, hair combed and out the door.  Any of those 3 things can send them into a sensory break down. 

So...yes...I can see how I look...uncommitted, and unable to count on me.  I have to admit and be honest that I was disappointed not to be able to minister through music at our church currently.  As a mom of special needs kids...I could really use an outlet like that.  Something that doesn't involve kids at all...for an hour once a month. 

My wish is that people would see my unwavering commitment to my children.  They would watch me as I balance 5 therapies in a week, never missing a beat.  Cry with their therapists, strive for the next intervention, never giving up...never wavering.  They would view my stability as I manage a home, therapies, medical appointments, a family.  As I serve...day after day after day.  Looking inside our home to see that the very existence of our house is a place that meets the diverse needs of our children.  That our living room is now a therapy space.  That the blankets on my son's bed are special ordered to meet his needs.  My commit is unmovable.  My faith unshakable to the point that I raised 2000 dollars for a therapy intervention for my children.  To know that whatever happens... my children are my heart, my life.  They would watch as I never miss a medical appointment, advocate for financial help so that I don't have to work full time, and pray over my kids constantly.  So...you may not see me in the sanctuary at church, or singing or playing the piano with the music team, but I am there.  I am committed and I am ministering to the 3 little people God has given me. 

After the initial disappointment, Mark and I talked...my ministry is not confined to 1 hour a month, but my ministry is 24 hours a day, 7 days a week. It is the ministry I took on, when I said "yes" to a 13 month old Luke, and a 13 month old Grace, and when I heard Bella cry for the first time.  I was thinking this weekend as I have been processing this news.  I was reminded of something my youth pastor, Luke Gillock taught me so many years ago.  He shared a quote that has stuck with me and comes to mind in times like these....

"It is not the critic who counts: not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better.  The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly; who errs and comes short again and again; because there is not effort without error and shortcomings; but who does actually strive to do the deed; who knows the great enthusiasms, the great devotion, who spends himself in a worthy cause, who at the best knows in the end the triumph of high achievement and who at the worst, if he fails, at least he fails while daring greatly.  So that his place shall never be with those cold and timid souls who know neither victory or defeat." ~Theodore Roosevelt

Blessing

An unexpected blessing found its way into my kitchen this weekend.  It was a happy surprise that has left me smiling all weekend.  Every once in awhile, on this crazy journey of "life" a blessing comes along that reminds me that God cares about the "little" things.  I am so thankful today for an ice maker!  I know....I know...that sounds crazy but for the past 5 years I have been either making ice or buying the bags and dumping it into the ice bin "pretending" that the ice maker really worked!  So this weekend, every time I heard the ice maker drop ice into the bin, or the water line fill up the ice cube trays I danced in the kitchen, much to my kiddos delight...who thought I was absolutely hysterical, laughed and then joined with me dancing in the kitchen.  Who would have thought ice would bring such JOY? 

Currently I have 2 refrigerators sitting in my kitchen.  Mark and I talked about what to do with our old Kitchenaid refrigerator.  We decided that we wanted to give it away to someone who needed a refrigerator.  Besides the broken ice maker, it works/runs great.  I took pictures of it and posted it on Facebook.  It lasted 2 minutes before there was a reply...actually there were several replies.  I was humbled by how many people could use a refrigerator and humbled by how unbelievable it seemed to others that we would give it away. 

Luke was sitting on my lap tonight and we were talking about the refrigerators.  I was saying what an awesome blessing it was to get the new refrigerator.  He wanted to know how much it cost.  I told him it was a gift so it cost no money.  He said "score!"  I told him the family that would be getting our white refrigerator (he knows them).  I told him that since we were blessed with a new refrigerator that mommy and daddy wanted to bless someone else.  We talked about how life sometimes is not about money or how much we have.  Sometimes the greater reward is in doing something generous or kind.  Luke then proceeded to tell me that we needed give money away to others.  He has incredibly kind heart!  It was a great conversation and a great weekend!  Thanksgiving can come in the shape of a refrigerator. 

Fight

Sometimes it feels like all I do is fight.  Me.against.the.world.  Fighting for Luke's needs to met in the classroom, fighting to make sure he has the meds he needs, fighting to make certain he experiences success, and me fighting against the insurance companies right now.  Ugh.  I hate that one little phone call from Luke's occupational therapy center can send my head spinning and my stomach turning.  I wish I did a better job of just not worrying about things.  Last Wednesday, after making sure the new referral for therapy was sent over from his primary care (so he could continue), they called to say that Luke's 30 annual visits for OT were expiring and that he had met his yearly max.  He has secondary insurance, but they went on to say that it has only been covering half of all clients lately and that we were "ultimately responsible" for paying for therapy sessions if they were no covered by anyone.  GREAT!  Like we have 350.00 per session just sitting around. 

Conversations like those leave me feeling 2 ways. First...upset that Luke would have to miss therapy because apparently having 2 health insurances are NOT enough.  And second...it makes me angry!  Angry that we are once again fighting tooth and nail for what Luke needs and deserves!   I work really hard to make sure that little boy gets what he needs.  I made a promise to get him the best medical care and I have full intentions of keeping my promise! 

After 2 phone calls and countless conversations, I was able to work it out with our primary insurance.  Pending their approval, they will accept or reject our petition for more therapy sessions. 

I was talking to Mark about how it is scary to think about a world that wouldn't include therapy for Luke. Not only does Luke count on the therapists in his life, I have come to rely on the support I receive that offer me an outlet (be that a minute or two) to discuss any questions or help.  I have realized I have come to count on "village" to help meet all of Luke's needs.  When and insurance company threatens to take that away...it becomes personal! 



Here

I know...I know...I have been absent for awhile.  To be honest, I have been so incredibly busy that blogging has been low on the priority list.  Then, the times I have sat down to write, I have been experiencing a bit of writers block.  Life is still happening around here, but I haven't seemed to be able to find the right words. 

Last month was full of our traditional "fall" activities.  There were 2 visits to the pumpkin patch, school picture days, school conferences, Halloween fun and many therapies and appointments.

I have finally adjusted well to work.  It took a good 8 weeks.  I finally feel comfortable in my position and confident in the work I am doing with my students and families.  I was BLESSED to be able to rearrange my schedule to have Fridays off now.  I traded my hours on Friday for my hours on Monday.  It has made a BIG difference in my outlook and I get to have a whole day to just be mommy.  My heart is very HAPPY!

Mark excepted a "mentor" position at work.  He was chosen for his ability to teach, lead and relate to others.  I am very proud of him.  He is soooo HAPPY working a "normal" predictable schedule again.  So am I!

The 3 kiddos are doing well.  Luke is doing well in school.  He is still attending his therapies and his medical appointments at Casey Eye OHSU.  His eyes continue to be stable.  He will have a BIG appointment this coming January.  They will track his peripherally vision to see if he has lost anything in this past year.  Nervous.  Grace is doing well.  She has graduated from speech therapy and is still getting some help in reading.  She keeps me on my toes, but is a really great help to me around the house.   And she is funny!  Bella is doing therapy now in our home.  I am not too sure how I feel about it yet.  It is the new model that they just switched too.  I am so used to going somewhere so it is a bit weird to get used to having different people in and out of the house.  She is trying to exert her authority over our home with screeching and yelling.  She is hysterical these days too.  Right now her favorite thing to say is "so terrible mommy."  Cracks.me.up! 

More to come soon (including pictures from Halloween!)