Coronavirus: Railroad Wife Edition (Day 66)

Someone asked me the other day, “when is Mark going to be on a “normal” Work schedule again?”  Oh if I had a dollar for every time I have been asked that in the last 18 months!  LOL.  I wish I had answer and knew.  Believe me...there is no one who wants that more than this girl right here.  I think the best answer I can give to that question is when I decide to go back to work as a teacher.  Even part time teaching would be enough money for Mark to work in the train yard instead of traveling on the trains.  The train yard equals a set schedule with set days off.  You see...I had this plan...we had this plan.  I have worked all school year on taking the necessary requirements to renew my teaching license.  I finally finished this past month and submitted all the necessary documentation to the state. But as we all know...the coronavirus is here and has disrupted all our lives.  They really aren’t hiring any teachers right now. Ive applied for a few jobs, but have heard nothing.  VIPKid has decided to cut teacher pay across the board starting August 1. Finally, I had enough bad news and called my mom yesterday and just let it all out (vented, cried, laughed...all the emotions).  Now...we just wait.  

What is it like to live an “on call” schedule with a family?  Mark works for the BNSF Railway as a train conductor.  He has been doing various positions within the company for the past almost 16 years.  My favorite position was when he mentored in Kalama, WA, and my least is him working the “road” or traveling with the train to Pasco and back.  

We have learned to exist in this place where we literally cannot plan anything ahead of time.  Everything, except for his vacation weeks, is done last minute.  Birthday parties, dates, meeting with friends, making appointments, holidays, school events, etc. is all decided last minute.  For example, last week was my birthday and mom is wanted to plan a BBQ.  Mark decided to take some personal leave days last week so we could make plans to celebrate my birthday, otherwise it would have been up to the railroad gods what would have happened.  Mom is great about being flexible and making things work too.  

Sometimes I am relaxed and go-with-the-flow and sometimes I HATE it so much.  It is difficult to not be able to plan, And it is also difficult to know exactly how long he has off between trips.  Mark gets a specific amount of “rest time” before they can call him again.  Sometimes Mark can predict when he will get his call for work, and sometimes he is way wrong.  The phone can ring at anytime day or night.  Many nights he kisses me goodbye at 2am, 4am etc.  We just never know.  

Mark and I are planners.  We want to plan.  We want to go out with friends.  But sometimes it just doesn’t work out.  Ive learned to be okay with it mostly, although some days it gets to me (like everyone else).  Ive learned to live in the space of the unknown and needing to be flexible.  When Mark leaves for a trip to Pasco he is usually gone 36 to 48 hours (occasionally sometimes more).  I am on my own.  I have learned to be more self-reliant.  I have fixed vacuums, rescued toddlers from locking themselves in bedrooms, repaired broken trains, fixed TVs, navigated tire rotation, emergency trips to the ER, and I am sure a zillion other little things.  I manage the house, the kids, the bills, the appointments and everything else. 

In the beginning of our marriage Mark worked for a high voltage electrical testing and maintenance company.  I would often spend days and weeks on my own as the company traveled to different work sites.  I think the longest trip apart we had was a little over one month.  He traveled to Texas and then Ohio.  I learned to be independent and self reliant.  It is more different now with kids.  I navigate the physical, emotional and now educational needs of these fabulous four kiddos.  Most days go by in a blur.  Me moving from one task to the next in a kind of choreographed dance.  From dressing, cooking, potty training, and Zoom meetings...to wiping floors, tables and sticky hands...to managing medicine, appointments and behavior...to cleaning toddlers and toilets, clothes and floors.  And before I know it finally to drop into bed at night only to rise in the morning and do it all over again.  

I am not really sure where I am going with this post only to say parenting is hard.  Whether single parenting or both partners together, foster parenting, grandparents raising kiddos...caretaking is hard work.  We all face our challenges, especially in this time of pandemic.  Carry on my fierce friends...we got this!

Life @ The Dahlhouse: When ADHD Makes Things Hard

Things have been hard...very hard.  The atmosphere around the house has been tense at times.  I could share pictures of my cute kids (which they are) and share all the funny things they say (which they have); however, life sometimes serves up hard times.  And things have been kind of messy around here.  No clear direct path to the answer.  And for my brain that is difficult.  I want resolution and solutions, and I want the problems fixed, and fixed yesterday.  I am not patient, and I want immediate results.  I don't want to wait.  

Being a special needs parent is tough.  There is no manual, there is no one telling me what to do, and what step to do next.  There is no one feeding me the answers so I don't make mistakes or mess up.  And I know I mess up.  My hearts longing is to make all the right decisions for my kids. But reality is that I am going to mess up.  And I do mess up.  I always worry that I am not doing enough, or that I am doing too much.  Or that I missed a specific therapy that we should have done, or done one that we should NOT have done.  Are they on the right meds?  Should they be on meds? Should they be eating that or NOT eating that?  Sugar...no sugar?  How much screen time...ahhhh the list goes on and on. 

And then their is the voice of guilt in my head...I hear it chastising me over choices made or not made.  Should we have gone gluten free? dairy free? sugar free?  Am I giving them too many choices or not enough choices? Are they going to end up in therapy someday because we didn't do sports, or after school activities?  No matter that our after school activities include trying to the loads of homework or appointments/therapies.  

Then there is the sadness and grief over how I wish my life was sometimes.  Not always do I look through that lens; but sometimes the waves are huge the surprise me and hit me out of no where.  A few weeks ago, I was shopping at Walmart.  Luke had outgrown all his pants seemingly overnight.  The printer had ran out of ink during the all important making of the science fair projects.  So off Luke and I ran to Walmart to pick up pants and ink.  While he was trying on a zillion pairs of pants, I caught sight of his shoes (which were worn).  After we had selected the appropriate pair of pants, we wandered the isles to the back of the store where they display the shoes.  I found a good looking sport shoe that would last until we could find something of better quality.  Shoe shopping with Luke has always been difficult.  Due to sensory needs, he prefers his shoes to feel and fit the exact correct way.  It tries my patience every single time.  I turned to show Luke the shoe, and found he had wandered to the end of the isle.  Right in front of the Velcro shoes.  "Mom I like these," he told me.  I eyed the shoes.  They were black with orange highlights and had three black Velcro bands that sat across the front of the shoe.  They were like the kind he wore when he was 4.  I thought about my words very carefully.  "Buddy, you are 15 years old.  You need to find some shoes that tie."  "But mom," he argued, "I can do these shoes.   They are easy and I don't need help."  I agreed with him in my mind.  "Yes", I told myself, "the kids at school will get one look at these and they will eat him up."  My heart literally broke in that moment.  My boy, not caring what people think wanted the shoes that he could do independently.  And here I am having that moment... that 15 year olds should want to wear NIKE's and not Velcro.  We ended up reaching a compromise, without him knowing any of my thoughts.  There were a pair of shoes that were Velcro but did not look like Velcro.  God bless the designer who made these.  After we returned home, I went up to my closet and cried.  I wish it wasn't so difficult for Luke to tie shoes.  I wish he could fit in with the other kids at school and not stand out.  I wish for so many different things.  I wish everything wasn't a challenge for him.

School this year has been very difficult.  Much more difficult than last year.  I am not sure why, and I have spent many hours wondering this.  Perhaps the kids have been tougher on him, or he has not matured as fast as the other boys, and they notice it.  It is so trying on my mama's heart to watch him go through the struggles, and see the tears, and hear the hurt.  On one particular difficult week, I stopped in to have lunch with him and play Yahtzee during his lunch recess time. I wanted him to know that someone cared, and was rooting for him.  Most of the teachers at Luke's school, understand his needs, and help encourage him.  Many times this year, I have been told by various teachers what a good heart Luke has, or how he helped them, or did something kind.  I use these moments to feel encouraged that I am doing something right as Luke's mom.  That his character is so much, much more important than his grades.  As a former teacher myself, it is difficult for me to do this, but I understand that each kiddo is different, learns different, and goals in life are different.  We have to celebrate the individual victories and triumphs that come along.  Luke is the kid that buys Gatorade for the kids sick on the DC trip, or carries boxes to a teacher's car after school, holds open the door for EVERYONE, and is the first to volunteer.  Gosh, I love him.

The school work has been very difficult too.  So much that has challenged him, angered him, frustrated him.  But somehow we have both banned together and worked our way through it.  I couldn't have done it without the help of tutor that comes to the house twice a week to help me carry the immense load of work.  Stress is a real thing for kiddos with special needs.  Luke feels it and deals with it in ways that he knows how (sometimes ways that are not very constructive).  ADHD is real.  And from my latest research and studies on this disorder, the main concept that continues to be shared by authors, doctors and articles is that ADHD is an executive functioning skills disorder.  At first I was like, "what the heck is executive functioning skills?"  But the more I researched, I found out that those skills are used in every part of our daily lives.  From organizing yourself to get up, get dressed and all the skills that go with that, to staying focused and attentive in class, keeping track of assignments and homework...it's all related to your executive functioning skills.  It is so so difficult for these kiddos with ADHD to be organized in any area.  I am learning, as Luke's mom and advocate, how I can help this summer to work on some of these skills.  As long as there is a breath in me, I will be continuing to educate myself, to educate Luke on how he can do more, be more and embrace the amazing human he is, and share his gifts with the world.  I will continue to build him up and encourage him, and to speak back to the voices that tell him "he can't".  To which I say, "yes you can!"  We need more Luke's in the world.  I am so very lucky to have him in my life.  

Week #26 & 27 @ The Dahlhouse

Summertime is in full swing at the Dahlhouse.  I am enjoying having a more relaxed schedule.  Even within the down time of summer, we continue to have a "schedule".   Monday's find us traveling to and fro from our little community library.  I finally found it!  It is the sweetest little library and perfect for my kiddos to peruse the aisles searching for the perfect book.  Bella calls it "book shopping" and cracks me up each time she says it. 

Water fills many of our hot days. 

Because this little one LOVES water sooo much, we have decided not to set up our big pool this summer.  Instead we have opted for a smaller pool that can be emptied when finished.

However, the size of the pool does not stop the big kiddos from joining in on the activities.  Pool is a pool.  LOL.  Grace is a joy!  She and Matthew have such a special bond and Grace is an excellent helper.  I can always count on her for Matthew help.  She is growing up.  Can't.even.believe.it!

Even though it is summer, the process of fighting and advocating for my kids does not take time off.  Even on a warm Monday, you can find us in the doctor's office with double appointments because this mama has a concern.  Man...I LOVE MY BOYS!  Luke is struggling...he is such a sweet, beautiful soul.  What a privilege to be his mama.  In the midst of Luke's of trials and hard stuff....I am crazy, deeply grateful for my amazing son!  He bring such joy and how I love him and the good God that brought us together.  Pray for him if you think of him.  We've had some very hard days around these parts. 

And oh Matthew...the little person I wished for that I didn't know that I needed!  Matthew is in Infant Toddler Early Intervention.  We have therapy for him for language delays.  He also is tip toe walking. I am concerned and needed the doctor to look at him.  After an exam and four xrays that left us both sweating and crying, he was referred for a pediatric therapy evaluation.  Knowledge is power.  We will be happy if he is fine, and happy to get help if he needs it. 

I finished this book in June.  Wow!  I knew it would be a hard read...and it was.   As a mama that has had both life and death within her...that has said goodbye to three little babies I never knew...my soul needed to read this.  I needed to feel it again.  I needed to grieve a bit more.  I needed to let myself go there.  And I did.  I cried the ugly cry more than once and surprised myself that even after 15, 14 and 12 years ago of losing my babies, the memories, the pain, the dreams and hopes for these little tiny humans were still there.  I allowed myself to feel it and talk about it.  And.it.was.good.  I am glad that I read this book. 

My photobook from Shutterfly arrived.  I designed one about our anniversary trip to Hawaii.  It turned out better than I expected and I highly recommend them.

My scar from my skin cancer is healing very well.  It is better than I could have imagined!  I am very happy. 

 Everyone needs a batman in their life!

 And a baby with a cat on their heads!  Thank you Facebook messenger!!!

 BBQing at Mimi and Papa's.

 Holding on to Hope while parenting on difficult days.

Bella had the opportunity to take a Mandarin lesson through a company called Lingo Bus.  It is a partner company with the one I work for VIPKID.  She loved it!  She is obsessed with Chinese culture.  She loves Panda's, Chinese food and learning people's names in Chinese.  I heart her so!

We've been selling pizza cards as a fundraiser for 4h.  This is our new mini rex rabbit.  She is super soft.

Papa and Mimi took Luke this last weekend for an overnight at their house.  They also took him golfing!  I am hoping that Luke will be able to join the high school golf team in a couple of years.  He really loves it and I think it would be very good for him.

Finally two of my kids promoted grades/classes on Sunday!  Bella moved up to the first grade class.  And Luke graduated out of children's church on Sunday mornings.  He is now going to be a helper for the younger kids classes.  Grace is excited as well because she gets to begin going to youth group.  Tonight is her first night!

An Open Letter to the Kids Bullying My Son

An open letter to the kids bullying my son,

I wish you knew the boy I do.  The one who wakes up every morning and is genuinely happy.  He’s been that way since he came to live with us at one years old.  He is a light to those around him.  In fact, his name, means “bringer of light”.  My son is logical, caring and loving.  He isn’t afraid to hug and kiss his mama in front of you, even though is now 13.  My son is great with younger kids. They adore him, but he understands his limitations relating to you and being accepted by you.  He tries so hard, but my son knows he falls short.  He knows you see him as different solely based on the way you treat him. 

My son was supposed to have attended his first middle school summer camp last weekend.  I am certain he would have had a wonderful time.  However, he was so overcome with worry and fear about being alone and bullied that he told me he couldn’t do it.  My heart broke.  I understood…he had no special friend to go with and no one to stand up for him. 

Truth is…while I see many of you hanging out, spending the night at each other’s houses, going to the movies, I see that my son doesn’t have any friends to do that with.  Last year when he was sick and couldn’t attend the sleep over with all the boys from the class, you reminded him for weeks over and over again what a loser he was for missing out.  My son still recalls this event and how much he wanted to participate.  And my heart breaks all over for him. 

I wish you knew the boy that I do.  The one that has overcome so much.  The young man that spent the first nine years of his life in some kind of therapy to help him.  My son has spent hundreds of hours in a combination of physical, occupational and counseling therapies.  He has worked hard to accomplish skills that come natural to you.  I have heard doctors tell me that my son might not hear, or read, or know how to understand money, or function independently.  Yet here he is proving every one of those doctors wrong.  My son has undergone several ear surgeries and heart surgery.  He has the diagnosis of ADHD, Tourette Syndrome and childhood onset glaucoma.  Yet none of these labels stop him from trying to keep up with you, relate to you and be friends with you despite how you have treated him. 

I know the boy you think you see.  The one who stands a little too close and doesn’t quite understand how that makes you feel uncomfortable.  The one whose eyes twitch and wink, or the boy who clears his throat over and over.  You see the boy who blurts out answers without being called on and has a hard time staying on task.  And one who forgets his homework and struggles with comprehension.  My son likes to be right, even if he is wrong and is often argumentative.  But he is quick to apologize and the first to check on you if you are hurt or upset.

Also, in his eagerness to participate in the classroom discussions, when called on, takes double or triple the time to complete a thought.  I understand how that might be irritating or frustrating.  However, it doesn’t excuse or make it ok to ask my son if he has taken his ADHD medication and then tell him he should take five more pills.  It doesn’t make it ok to tease him, or to take the food from his lunch box and eat it in front of him, or call him slow, dumb or stupid.  My son is anything but that! 

Please don’t ask him to stop his tics (eye winking, twitching, and clearing his throat).  My son has no control of his tics, and when you ask him to stop it only makes them worse.  He can’t stop.  Tourette syndrome is a neurological disorder that eventually one day he might outgrow.  You might see my son trip or run into things (including you).  He isn’t doing this to be funny or to upset you.  His peripheral vision is diminished on both sides (glaucoma) with the left side being worse than the right.  He has to take meds for this too.  He also needs to face the white board straight on.  

Don’t steal his things and then tease him.  He has enough difficulty keeping track of his belongings.  Please don’t make up games about him and provoke him.  Don’t pick him last or not include him on your sports teams.  Stop stealing his basketball and stop playing keep away from him.  Do not make fun of the fact he plays baseball on a special needs team and then tell him it is not real baseball.  You crushed his spirit when you did that.  Don’t sit around in a group and tell him how you all are not his friend and then when he has the courage to advocate for himself to an adult call him a tattletale.  Don't call him a "little sh*$" on the playground. Is there really nothing better to do with your time than to work on crushing the spirit of my son?  How difficult is it to shoot some baskets with him, or play card games, or chess or checkers?  Things he adores and is good at. 

You should know, this boy you bully, my son, is my hero.  Despite everything stacked against him, he is there, at school, fighting day in and day out.  He works so hard to keep himself together and try and keep up with you in the classroom.  You will always read faster, write better, and comprehend quicker.  Skills will come easier to you always.  You do not have to point it out to him every time he makes a mistake.  He already knows anyway.  My son is aware.  He tries to conceal how you make him feel.  But I see it.  I see the weariness in his eyes.  The defeat in his demeanor.  The tears that roll down his cheeks, the questions he asks me about why you say certain things or act a certain way.  About why he was made the way he is.  I build my son back up after you tear him down.  I put the pieces back together day after day after you rip him apart. 

I drop him off at school the next day and as my son springs out of the minivan, he is already yelling good morning to whichever classmate is in front of us.  You shrug him off, and I want to yell at you!  I want to scream, “Don’t treat my son that way!  Don’t you see what a gift he is giving you?  Yesterday you treated him like garbage and today he has totally forgiven you and is once again trying to befriend you.”  And I drive away with tears streaming down my face for the injustice of this world.  I say, “it’s not fair” over and over and over again, as if expecting someone to console me.  I know the universal truth that life is not fair.  And then I pray.  Because really that’s all that is left to do...Pray.

It is this mama’s hope and prayer that one of you…one of my son’s peers, sees him for who he is and befriends him.  That one of you, somewhere in my son’s life would choose to go against the crowd and see him for the amazing human he is.  My son is genuine and loyal.  He loves animals, especially dogs, Star Wars and reading.  He loves to fish and hunt with his dad and is an excellent marksmen.  It is difficult to show you how he excels in those areas within the four walls of a classroom.  He really is quite amazing.  Maybe if you quit trying to be “cool” you might get to experience the incredible gift of friendship my son has to offer. 

Updates...

It's the end of the month...time for updates!

Luke is so TALL!  Every time I hug the little guy, I swear he grows another inch!  During May he returned back to occupational therapy at Legacy Salmon Creek.  It is amazing how a month back on track has effected him in such a positive way.  He is cooperating more, sensory behaviors have lessened to some degree, he is wearing his compression shirt and is tolerating 15 minutes of iLs (our listening program) a day.  This a HUGE improvement from the boy who refused and threw a BIG fit if I put the headphones on him.  The month also brought an intake for counseling to help me and Luke at home.  He played several awesome baseball games, and he took a field trip to Fort Vancouver.  Luke is getting ready to earn his green belt in karate.  His eyes are stable for now.  We have another appointment at Casey Eye at the end of June.  The doctor is planning on giving him another visual field test sometime this summer. 

Grace is doing very well.  She is still enjoying her pierced ears, although I have to admit she loves to go through earrings. :)  She has been getting ready for her big ballet showcase in June.  Her dance class is tapping to the song "It takes two."  It should be really cute!  We just had her dance pictures taken yesterday.  Nothing like 12 girls in red lipstick :)  She is doing well in school and despite setbacks in reading she has been catching up to grade level.  I attended her 1st grade music performance in May and watched her sing her little heart out and twirled her ribbon.  She shinned!  Grace is anxiously awaiting the return of her speech therapist (who has been out on maternity leave) so she can attend therapy at the same time as Luke. 

 This little pixie has been acting "2"!!! This past month she has mastered the art of screaming at the top of her lungs when she doesn't get her way, throws her self on the floor and yells "it's not fair", and has eaten more fruit snacks than I can count.  She is picking up words so quickly and communicating with me all the time.  Her favorite activity this month so far has been going to the "mailbox" so she can open the box with the key.  This ususally goes on until I drag her screaming out of the post office. 

This month brought me a lot of appointments for the kids and myself.  There was not one week that did not include at least one medical and one therapy appointment.

I found out recently that Luke's teacher (whom I adore) will not be looping up to 4th grade (like everyone had been telling me she would be).  I was crushed and I cried.  I actually began thinking that this summer I could relax and not worry about what the next school year would hold for Luke.  I could enter a year and have the teacher know my son and my son know the teacher.  There would be a relationship established and the teaching and learning styles known.  The thought of having to introduce another teacher to Luke and begin the fight all over for his needs next fall is a daunting task for me.  I was looking forward to having a break from the "advocational" role this next school year, but it's not to be.  Sometimes the fighting is non-stop.  Today I just have a bad attitude and it doesn't seem fair.  I know life isn't fair, but today I just want it to be.

This has led to me having trouble sleeping.  I have a difficult time falling asleep when Mark is gone.  My sleeping patterns are way off.  He has been gone probably at least half the nights in the last month.  It gets lonely a lot.  I try and keep my kids as the sole focus and count my blessings to keep a positive attitude, but I must admit I don't always do this.  I am certain I yelled at the kids when the windows were open and the neighbors heard my sin.  Sometimes moms just yell.  I hate that.  I read that when you yell it only shows that "no one is in control."  I could use prayers and support.

Mark's activities consist of work, president of the deacon board at church, helping our neighbor build a room in their garage, hiking Dog Mountain, poker night.  I don't know how he does it.  But I am glad he is a better time manager than I.  I am working on it.  When everything boils down...I.just.miss.him.alot!!!

Devastated

Last night I received a call from Janell at Dynamic Learning Services (where Luke is doing his listen therapy). She said that our insurance decided they are NOT going to cover the therapy that Luke so desperately needs. I was shocked as I listened to her sweet voice tell me this. I had done ALL my homework and called the insurance company before we even proceeded with the first evaluation. They had also called and made sure our insurance would cover the therapy. We were both told they WOULD. Janell kindly told me that we had two options: pay for the therapy ourselves, or buy our own ILS (integrated listening system) and do the therapy with Luke ourselves. To take Luke for the 30 sessions to West Linn would cost us 3800 dollars for the 4 months plus gas on the hour commute 2 X per week. To purchase our own ILS and perform the therapy at home will cost 1800 dollars. Yes, the 1800 dollar machine won't be "as" good as Janell's, but they are both made from the same company with the same scientific research.

After she told me the devastating news, I cried for a half an hour. I WORKED so hard arranging all the commuting, fighting for the two different time slots, arranging with the teachers and staff at school, laminating all the speech sounds cards, etc. But mainly I cried for LUKE. WHY must everything be so difficult? I felt like a failure as a mother. "If I was a good mother, I would have the 825 dollars a month to take him." But the truth is I DON'T. So...after a good pity party (thank you Maryjane for reminding me it is ok), a talk from my MOM and MARK, and being reminded by my sweet SISTER that I am Luke's biggest ADVOCATE and a FIGHTER for him....following her lead....I AM GOING TO FIGHT! The health professionals have shown me his deficits, proven to me the auditory difficulties he has and have made the case for WHY this THERAPY is so important. The only thing they haven't done is made the therapy possible for mommy's like me. I don't why GOD would change the path...but here we go. We decided we need to raise the 1800 dollars to buy the machine for home use. Not only will Luke first benefit but Grace can go through it next, and Mark can use it for the Dyslexia he struggles with, and it will only be another tool for my career work in sped.

The TRUTH is...we can't do this alone. This is a time I am asking for HELP. I hate asking for help, but I need it. My sweet sister Katie decided to donate all the proceeds of her online store to Luke this month. I am blown away by her generosity and creativity. You can visit her site and purchase something and all the proceeds will go directly to Luke to help bring him this therapy. Her site is www.etsy.com/shop/slated If you would like to make a donation to Luke there is button posted at the top right hand side. If you can offer your prayers to partner with us that God will provide for Luke we would extremely appreciate that too. Thank you!