Quarantined: Coronavirus Day 15

Thirty days ago, this was not even remotely a possibility in my mind.  Schools closing, non-essential business closing, people losing jobs, people getting sick, people dying.  Words such as “social distancing” and “covid-19” and “pandemic” were not apart of my vocabulary.  Yet, here we are...wearing masks and gloves to buy groceries and other essential items.  This is now my grocery shopping normal.  My reusable mask, with a pocket for the filters, is a staple when I leave my house now.  Along with disposable gloves, hand sanitizer and disinfectant wipes.  I find myself calculating the risk of leaving the house for groceries vs. staying home for another day.

However, today was a day I needed to get some things for my crew.  I left all the kiddos home with Mark and ventured to Costco, which is very well organized and I felt very safe shopping in their store.  Today they had a lot of toilet paper.  I bought one more pack to share with anyone who might need some.  That will be the last pack I purchase for awhile.  I was able to get paper towels for my mom and Roger, and other needed grocery items.  They had sugar and flour and Matthew’s all important Top Ramen in “beef” flavor.  

I continue my struggles with anxiety.  Currently, anxiety thinks it is a close friend, and has taken up residence again in my life.  Sometimes anxiety is a distant friend, who only will come around occasionally.  I am fighting the beast.  But it is everywhere (social media, news, computer, community, even in my dreams).  I can’t escape.  I am practicing as much self care as possible, but my normally heavy workload is even heavier.  I feel myself trying to balance and shift the ever increasing weight.  Thoughts bombard me constantly.  This is an example of what is floating around in my brain these days, “did Bella do a math lesson today? Did Luke feed the rabbits?  Is Grace in her room?  The dishwasher needs unloading.  Where is Grace? How is Luke doing on his health class?  I should sit with him more.  Is he out of medication yet? Maybe I should refill his prescriptions now.  Where is Matthew?  Why won’t he potty train?  What am I doing wrong?  He isn’t eating enough variety of foods.  Maybe we should go back to feeding therapy.  Wait...nothing is open right now.  I wonder how Mark is.  Is he tired?  Is he feeling okay? Did he pack enough food for the trip? The restaurant isn’t open right now.  I hope he can get enough to eat.  I hope he has enough cleaning supplies for everything.  I should look for some more disinfectant wipes.  Wipes.  I should probably wipe the counter off again and Lysol the bathrooms.  I need to remind kids again NO shoes in the house. Did someone just cough?  Who coughed? How are they each feeling?  Have the kids been on screens too long? Will the weather hold out long enough for a walk? I need some time alone without someone yelling “moooommmmm.”  What am I going to do with three kids doing distance learning next week and they ALL need me?  I don’t know how any teacher thinks I am capable of helping my kids do all the work that have assigned.  It just isn’t possible.  I am only one person trying to keep my kids healthy and safe during this time.  Truth is I don’t even care about school work right now.  Oh gosh I am a horrible teacher.”  

Tomorrow I will have my first telehealth counseling session with my therapist.  I am going to lock myself in the my office for one hour tomorrow and unload the weight of the world to my amazing therapist, and I know she will offer some advice and encouragement like she always does.  Self-care.  So thankful I don’t have to give that up.  I also decided I am going to start watching my favorite show “Gilmore Girls” from the beginning.  It always brings me such joy.  I tried to sneak a walk in tonight, just me, since Mark was home.  But I had a gaggle of kids that were anxious to join me and I couldn’t refuse.  They needed out as much as I did.  So I listened to them chatter away, about dogs and trees and playing and BBQs and parties.  Such sweet conversations.  Keep adjusting my friends.  I am still adjusting.  Adjusting my routine, my life, my expectations.  And give yourself grace...so much grace.  

An Award, Snow and Fighting Depression: Week Three

Mark is incredibly humble.  Do you know of anyone like that?  A person who is faithful, trustworthy and does the right thing.  Well...that describes my Mark.  He came home from one of his trips to Pasco, and gave his award to me.  He told me that he was presented this award for reporting a man he saw wandering on the tracks.  Because of his great description,and reporting right away to the police, the man was apprehended.  This man was actually a wanted fugitive.  I’m incredibly proud of his accomplishments with BNSF.  We celebrated by buying him a new railroad bag.  He has wanted this one for awhile and I am so happy that he bought it.

In week 3 we saw some snow!  It snowed off and on during the week.  The kids had a couple of late starts and one snow (rain) day.  Wasn’t quite sure why we had that off.  It has a been an incredibly mild winter this year so far.  

Isn’t preschool art the best?  I am LOVING all the art work that Matthew is bringing home these days.  It takes me back to my days as a Special Education Preschool Teacher.  

Seriously...how adorable is the snowflake?

Matthew has been very attached to Mark.  He cries and cries when Mark has to go to work.  “I want you to stay with me!”  He pleads.  It is so sad.  They are the best of friends.  However, as soon as he realizes Mark is now away at work, he is back glued to my side.

Bella and Matthew genuinely have a wonderful relationship. He adores and copies EVERYTHING she does and she LOVES calling all the shots.  Do any of your children have a special bond with a sibling?

If you wonder what Matthew has been up to these days, he is stamping all.the.things.  I have gotten more done while he stamps away on paper, and the counter, and quite possibly covering his hands.  Hey it’s sensory right?!?  

And we cannot forget my most feisty, crazy, up for a laugh, daughter of mine!  Gah....she literally has me crying from laughing so hard.  I’m telling you...God put her in my life for some comic relief, and to remember to not take myself so seriously.

And I need that little spit fire!  The end of week 3 found me struggling with depression.  Ahh.  It flairs it’s ugly head at the weirdest of moments.  Sometimes it comes out of nowhere, and other times I can feel it creeping it’s way up and over me.  Perhaps, it is because January is the longest month of the year and it has rained every.single.day of the month.  Or maybe because the load I am carrying at times feels too heavy to take another step.  But maybe because I am human, and realizing that sometimes it’s okay to not be okay.  I’m more gentle with myself now.  I have my therapist, and my peeps that I call and feel safe enough to share really, honestly, how I feel.  I have my meds and vitamin D, and trying to take walks outside between the downpours.  And I know it isn’t forever.  The sun will shine again.

Life @ The Dahlhouse: Special Needs & Finances

I turned 40 last week.  How in the world can I be 40 already? I still feel 20!  They say age is just a number.  Yet, as a kid, someone who was 40 seemed so old and grown up.  So, here I am 40, and I have to say this was a really hard birthday for me.   I never struggled with turning any other age, but this one threw me for a loop.  I spent  a lot of time reflecting on where I thought I should be vs. where I actually am.  

I thought at 40 I would be a well established teacher with a Master's degree and married with children.  Well...I got the married with children thing correct.  But the career and degree have never come to be.  I have worked at various schools over the years, but have never felt a niche or a place I belonged.  Currently, with Mark's work scheduled, I can't hold any job outside of the home because he works and "on call schedule".  All that to say...I would love to work a part time job outside of the house to help contribute to our families financial situation, but it isn't possible.  

Things have been tight financially for the last four months.  The railroad has been slower, and Mark has worked fewer trips to Pasco and back.  Which results in a smaller paycheck.  The slower railroad schedule has come because of President's Trumps trade war and taxes on import/export items from overseas.  This is what originally caused Mark to lose his mentorship position at BNSF, and had to go back to working the road with BNSF.  It is hard for me to not be angry, and I have really struggled with anger lately. I get angry really easy when it effects my kids. And these changes....Mark being gone all the time with an unpredictable schedule effects my kids greatly.  It seems no matter how hard we try...we can't get ahead.  I understand it is life, and we go through tough seasons, but this has been an unusually tough season for us.  Extra medical bills, the van needing new tires, Mark needing new glasses, and all the therapy copays has really taken a toll.

Bella has been in therapy since March for anxiety, which has been a huge answer to prayers.  It has really helped her as well, and I have gained new insight and education on the role our brains play in anxiety and how to help calm her.  Matthew has had bi monthly occupational therapy and I have had every other week therapy...because let's face it...I need someone to help me too.  

Last Friday, after Matthew's annual reevaluation for occupational therapy, I found out that he will need weekly feeding therapy again.  Feeding therapy is not something the school district will provide because feeding doesn't impact his education.  So for the next three months or so, Matthew needs weekly feeding therapy in addition to his regular bi-monthly occupational therapy for sensory processing disorder.  It means an additional $160 a month in co-pays in addition to the $240 co pays we spend on Bella and I.  I am trying to not feel defeated, but it's tough as a mama.  Of course we are going to get him the therapy.  He needs it, and he will get it.  But, it means sacrificing something to come up with the extra.  

So...I am starting back to teaching VIPKID again.  I taught a couple of classes last week, and have a few more this week as I slowly build up my students and schedule again.  I wish I could say I am enthused for this journey again, but I am not.  I know the sacrifice and the way my body feels in the late afternoons solo parenting after working so early.  But, I am a mom, and life is fluid, and sometimes we have to do what we have to do for our babies.  I'm trying to put on a brave face and have a good attitude about getting up early.  Truth...I am still working on that.  I need to teach 40 classes a month to cover all of the therapy co-pays.  So that is my goal.

Mark and I spent last week deciding ways we are cutting back to help overall.  One of the biggest changes will happened in September when all my kiddos will be students of Battle Ground School District.  After six years of paying for private school, we no longer can afford the ever increasing tuition rates.  Luke is just about to complete his freshman year at River Homelink and it has been an AMAZING program.  So this fall, Grace and Bella will join him at River Homelink, and Matthew will be next door at the elementary school in the special education preschool.  He will attend several days a week while he receives specialized instruction in the areas of adaptive and social/emotional/beahvioral skills.  

Other ways we have been cutting costs are: I have been menu planning and calculating all purchases carefully at grocery stores.  We used to eat out a lot for dinner, but now it is very rarely.  The grill and I have become close friends.  Our cell phone bill decreased because we finished paying off our phones and neither of us are getting the newest model, and our house payment decrease a bit due to taxes (which was a blessing).  Come January Grace's braces will be paid off and we will have a nice long stretch till Bella needs them. Its little things but will help us overall as we move towards winter.  I am also looking into what I would need to do become a tutor at our home for students with dyslexia. Perhaps I could make some additional money tutoring in our home.  I also run an Etsy shop (Dahlhouse Design) selling jewelry items and keychains/purse charms.  Sometimes we have to be creative.        

I know tight finances and special needs families are a common thread.  Needing a parent to be home and present all the time, the medical bills, and therapy costs, is another factor that effects the finances of special needs families.  I know most of us would work if it was logistically possible, even to get out of the house for a few hours a day.  Living on one-income is tough.  It is possible but some seasons of life are more challenging than others.  My faith is being stretched and I am desperately trying to see the light at the end of the tunnel.  The thing about seasons is that winter eventually becomes spring, but sometimes in the darkness of winter it is difficult to imagine the beauty of spring.  But we carry on bravely...because there is no other choice.  

Week # 5 & 6 @ The Dahlhouse: Schedule Changes, Rabbit Show & A Birthday Party

Weeks 5 & 6 are together for this update because my trusted, loved and well used PC decided to give me the "blue screen of death."  I have fiddled around with it for awhile; however, I have decided to let a good friend and computer genius have a go at it, and see if he can revive my good friend.  If not...{crying} I will be looking for a new PC. We've had our current one for 4 years, but I am not ready to part with it.  I love that computer.  But for the time being, I am currently attempting to make friends with my new laptop, which I have never really figured out.  Most of my pictures are all on the computer, so I have attempted to salvage a few from social media to make this update. 

Week 5 continued as normal.  It was mostly a quiet week.  Matthew had therapy, and continues to make progress on his speech.  He has begun to say a few phrases such as "play-it", "ready-set-doe", "bye-bye," "ba-ba," "puppies" (every animal is a puppies), "tank-u", "peeze," "nope", "daaaa-deee," "mommeee," waa-er," "beep-beeps," "bus," etc.  He has yet to really say a sentence or connect more than two words together.  Even the two words together is very far and few between.  I try not to worry too much and remind myself he is making progress.  I am still waiting for an occupational therapy evaluation.  His teacher therapist said that the waiting list is 4 months.  I've already been waiting 6 weeks.  I went this route because they told me it would be quicker.  Ha.  I have been thinking I am going to ask Matthew's pediatrician for a referral to Legacy for a "real" OT evaluation.  Like most things, you get what you pay for.  If I am going to pay for the therapy, I want it to be quality and I know it is at Legacy.

Yesterday our little Man Cub celebrated his 2nd birthday with a household of our family and very dear friends.  My heart was very full as I looked around the house at our friends and family.  What a blessing and support they are to me.  The theme for his bday was surprise..."Trucks".  I had fun decorating and coming up with ideas ( thank you Pinterest). 

Two weeks ago, Mark was asked to mentor in Longview/Kalama again.  We were shocked and overjoyed!! This position means a predictable schedule and set days off.  I can't explain how going from "no schedule" to a set schedule has changed my life.  It always does.  We had just completed 7 months of being essentially "on call" all the time to now having a schedule.  It's crazy.  The position is always temporary, mirroring the supply and demand of grain and other crops they need to ship through the port.  But I am believing for at least a few months of some peace and predictability.

Last weekend, two of the kiddos participated in a 4H rabbit show.  This was Luke's first time showing his rabbit as a senior.  This is the top class that Luke can compete in.  He was very nervous to say the least.  However, he did a fantastic job.  I had a very fun time hanging out and visiting with the other moms and taking a small break from the little 2 year old.  It was a great day.

Thursday's Therapy Tool: Weighted Compression Vest

For the next couple of months, on Thursdays, I would like to feature a therapy "tool" or activity we use in our home.  I know I have several readers of this blog that have kiddos with special needs or sensory needs just like mine.  Being a special needs mom and special educator, I thought I might dedicate Thursdays to blogging about some therapy "helps".

 

The first "tool" I would like to share about is Luke's "Weighted Compression Vest."  In the past we have used the weighted vest and compression shirts separately.  The weighted vest is grounding, while the compression shirt provides tight continuous pressure over his torso.  The "Weighted Vest" is an awesome combination of both the weights and pressure. 



This vest was generously given to us by an anonymous donor through Luke's occupational therapy center.  A grant was written by Luke's therapist and we were approved.  It was purchased through Fun and Function.  This is what Fun and Function wrote on their website to describe above vest:

 

"Our weighted compression vest is made to calm and provide steady pressure so your kids can focus and learn. Combined pressure and side weights function as a reassuring deep hug. Made of neoprene, the vests are designed for comfort with soft mesh material on the sides to increase air flow and overall comfort. Hook and loop closures on the sides allow for maximum comfort, easy sizing, and quick removal.

Weights are safely positioned in pockets inside the vest and can be added or removed. Vests include two 1/2 pound weights and four 1/4 pound weights for a total of 2 pounds (Except for xx-small which contains 4 1/4 pound weights.) Additional weights available- 1/2 lb weights fits all sizes and 1 lb weights fits sizes M-XL. Machine washable in cold water when weights are removed." 

 

Here is what the individual weights look like that are enclosed in pockets on the inside of the vest.  The weights are distributed evenly.

 



Here is the back view of Luke's Weighted Compression Vest.  It's hook and loop closures allow us to get the vest as tight as he wants it.  Luke is known to seek out this vest when his body is feeling out of control.  This last weekend for example, he was having a difficult time regulating his body and he went and grabbed the vest and put it on.  When he felt better, he removed it.  I have seen him do this numerous times.

Here is mister man happy in his vest!  We ordered the small.  Note that the vests run big and I recommend measuring the torso to find the exact fit.  This vest costs 52.99 and can be ordered by clicking here (Fun and Function's website).  We are so appreciative of the donor that allowed us to use this vest.  I highly recommend this product because of the combination of weight and pressure.  It also can be worn under clothes and not be too noticeable.   

MSP Meltdown

I am and educator and a mother and I will be the first to confess to you that I HATE state testing, especially for those sweeties that have special needs.  Whatever they have been putting in the water at Luke's school regarding the state testing MSP (Measurement of Student Progress) has really hyped him up.  He is wound up so tightly it hasn't taken much for him to blow up at any of us. 

 

His test anxiety has really been unlike anything I have seen from him before.  He just keeps saying, "I just want it to be over mom!"  His eyes fill with tears and I stand there helpless to fix it, make it better or help him succeed. 

 

I decided to call Anthony (Luke's therapist at Family Solutions) after Luke's first major meltdown this weekend regarding the ridiculous state testing.  Seriously...Anthony.is.amazing!  Hands down, perfect match for Luke.  Anthony understands Luke, and I was thanking my lucky stars he had lots of ideas to help his test anxiety.  A shout out of thanks!

 

First...we made a list of all Luke's worries regarding the MSP.  My heart sinks at what my sweet Luke thinks about this test. :(

 



Luke writes: I am worried I will get all the questions wrong.

I am worried I won't go to the 5th grade.

Worried I have to stay after school 30 minutes if I don't finish on time.

President going to get my test scores.

Talk during the test.

Held back.

Won't pass the test.

My fifth grade teacher will be cross with me (regarding poor test scores).

 

Seriously...my baby has so much worry over a stupid, stupid test!  I just want the makers of this testing to come spend some time with my son and decide if this test was in his best interest.  And while he does have accommodations, I don't know what they are really doing.  Are they really accommodating for him?  The way he needs to be?  It is these moments that I wonder am I doing the very best for my child?  Am I putting him in a situation that isn't good, but one that I think is good?  I am struggling with all this self doubt.

 

Anthony suggested we label Luke's worries into 3 categories (true, unsure, and false).  Most all of his worries were false.  I then had Luke erase them and told him he needs to erase those from his mind (because they are not true).

We made a step-by-step plan of his test day so he would know what to expect.  Luke is concrete.  He thrives on lists.

 

Finally Anthony suggested a positive statement that we can keep saying to Luke over and over so that he has something to repeat to himself.  Most of the statement was Anthony's idea but we tweaked it at the end with a little Luke language. 

 

I am just praying we survive the testing processes, I could careless if he passes the stupid tests or not! 

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! 



Miracle Baseball

It was my son's first baseball game ever.  There I was with my Nikon strapped around my neck, video camera on my hand, and my phone camera in my pocket, trying to keep track of my girls and crying all at the same time. 

You see this little boy has had the dream of playing baseball for a LONG time.  He has been asking for at least 3 years.  Well...begging is a more accurate description. 

Unfortunately a regular baseball league would not be possible for Luke.  His disabilities make the competition of regular play and social aspects of the game just too difficult...and while I understand that the regular leagues are just supposed to be fun...it wouldn't work for Luke.  His nature to challenge and question everything along with his limited attention span wouldn't work with his peers without special needs.

About 2 months ago, Luke came home with information on the Columbia River Miracle League from is OT at school.  Bless Ms. Kate for letting me know about this incredible program!  I promptly signed Luke up!  This league lets ANY child, no matter their disabilities play baseball.  The focus isn't on who can play first base, or who can throw the most accurate, or even what the score is (they don't keep score).  It is about FUN and giving kids the opportunity to experience playing on a field, running the bases, hitting the ball, wearing a uniform, while being ENCOURAGED by both teams! 

Today the mayor of Vancouver threw out the first pitch.  And the Evergreen High School Soccer team came to be buddies with the CUBS (Luke's team).  Each baseball player gets a buddy.  Luke's buddy today was Connor.  Connor did everything along side Luke.  He went up to bat with him, ran the bases with him, was along side Luke as he was fielding the ball (or every ball for that matter).  We need to work on the sharing aspect. :)  Personally my favorite play of the day was when Luke decided to run the ball to first base instead of throwing it.  Oh well...no one cared, and in fact told Luke "nice hustle Luke!" 

Imagine how my Luke must feel now... because today...when HE got up to bat...and HIT the ball...the crowd ERUPTED with CHEERING and CLAPPING because HE HIT THE BALL! "GO LUKE! RUN!!!" 

ALSO imagine how my Luke must feel because when he decided to get off first base to run over to me to excitedly tell me all about his "first" BIG hit, no one YELLED at him or told him NO or got UPSET.

NOPE..they CELEBRATED with him this huge VICTORY, which to LUKE is EVERYTHING and to anybody else wouldn't seem like much.   

Kids with disabilities are still "KIDS".  They have the SAME dreams as kids without disabilities.  Just..the road that they take to reach their dreams is different.  It may take the form of a 1 hour game where everyone bats each inning, everyone hits each inning and everyone makes a home run each inning.  The game is really 2 innings long.  No one worries about the score, or strategy or relief pitchers or even pitching from the mound for that matter.  I think Luke's biggest concern was what they were having for snack after the game....note to self...our snack turn is Sat. May 12. :)

It is true what they say..."it takes a village to raise a child".  I couldn't provide this "Miracle Baseball" experience for Luke even if I wanted to.  This was our neighborhood school reaching out to our family, connecting us with the community, so that Luke can have an experience like a "typical kid".  Because deep down...Luke is just a "typical kid" in an incredibly "special body".