Special Needs And 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.  

I Have A Dream...

I have dreams for my children.  Big dreams.  I think all parents do.  One of my biggest dreams has been finding Luke a school.  A school that can meet Luke exactly where he is at, instead of him having to adapt and conform.  While I agree that learning to adapt and be flexible are important life skills, I have desired and educational opportunity for my son that would embrace his learning differences and give him skills to succeed in the world. 

I think I have been looking for "that" school since Luke was exiting special education preschool.  The special education preschool was the last school setting that I felt really met Luke where he was and helped him.  Each and EVERY summer, I examine every different kind of school opportunity there is for Luke and hope and believe I make the right choice.  Because they never really "fit" him.  Some school situations have come close; however he is always the square peg trying to fit into the circle slot.  He isn't built for the "traditional" classroom, and school presents numerous challenges. 

Maybe by chance, or luck, or divine meeting I saw and ad for Bridges Middle School.  It was a Sunday in June, and I had packed up all 4 kids and drove to urgent care so Bella could be seen.  She had a cough that had lingered too long.  We were ALL sitting in the waiting room and Luke picked up a magazine to read.  He noticed a friend from his baseball team on the front.  While he was reading the front, I was reading the back.  It was an advertisement for Bridges Middle School.  I had never heard of this middle school before, and I made a mental note of the website.  www.bridgesms.org 

It must have been later in the week when I was able to have a brief quiet moment.  I looked up the school online, and what I found was the school setting I have dreamed of for Luke.  I read every word of that website more than once.  I cried as I read about the teachers, and programs and kids and where they had come from.  I sniffled as I read about their homework policy, plans to help teach these kiddos organizational skills.  I wiped my eyes as I recounted how they spent their days learning social skills and academic skills equally.  I saw how they used animals in their curriculum and classroom, and how they cared about and spent time with kiddos like Luke.  I was sold. 

AND... then I saw the price tag.  And.I.Sobbed.  $22,000 per year.  Why is everything good and wonderful and helpful so expensive?  How come it is out of touch for us?  I felt like a fool for even considering how we could pay for this experience.  But, I decided to apply for financial aid through the school.  They offer some tuition assistance.  I figured it was worth a try.  I have yet to hear back.  I knew I would always wonder what if?  I am choosing to not live life with regrets.  So I have stepped out in faith. 

Most people who I have told about Bridges Middle School think it is great school and wonderful idea, but too much money.  It is difficult to describe to them why it would be worth it.  As a special needs mama, you go through so many emotions (sometimes simultaneously).  You spend a lot of time trying to find the very best for your kiddos.  You know what is worth it and what is not.  You know what helps and what doesn't.  You know how the impact of exceptional help and therapy can transform you child.  How it can build confidence and provide help.  Bridges Middle School, could totally change Luke's life.  And I find myself hoping, and praying and pleading that somehow this school would be an option for Luke. I am hoping for a miracle. 

After seven years of searching, I have found a school that would embrace Luke and all his learning struggles and ADHD and glaucoma and Tourettes, and meet him where he is at.  I am daring to dream big for my son. 

Decisions..Decisions...

The last couple of years, making any type of "major" decision has been very difficult for me.  I think I spend too much time making pro/con lists and trying to think of every issue or hiccup that could come up.  Because of that I talk myself into and out of things because I am afraid of "making a mistake."  No more has this ever been more true when it comes to decisions that revolve around "MY CHILDREN".  I often feel a HUGE amount of pressure to not make any mistakes with them because of their history/past and all the issues they are dealing with.  You have seen examples of my indecisiveness  in my posts especially regarding school choices for Luke and Grace.

Mark and I have finally come to a very long and difficult DECISION regarding the school placement for the kids for next year.  Both Luke and Grace will be attending our neighborhood public school.  It pains me to write it.  It means that I will turn down a $3600 dollar scholarship for them to attend private Christian School.  We were blessed to be given this scholarship through "His Helping Hands Foundation".  Even after the scholarship it will cost us almost $1000 dollars a month to have them attend Christian School (rest of tuition, gas, hot lunch, extras like photos or book orders).  The truth is....the DIFFICULT truth is....admitting we DO NOT have that money.

More TRUTH....it leaves me feeling like a FAILURE.  In my mind I think..."what is wrong with me that I can't give a Christian school education for my children? They deserve it.  They've been through so much...etc.  My parents provided a Christian Education for me."  The facts are really 2 things.   First, we just can't afford it. Second most private Christian Schools do not accept kids like Luke that have special needs.  Not because they are wrong...they just do not have the ability to meet their needs.

So...it's time to move FORWARD and to LET IT GO.  I have to accept now that this is our path, that GOD, the creator the universe, knows my children and their needs and will protect them and uphold them and put the right people in their paths that will help them in school.

I am reminded in the midst of our school decision, in the midst of unknowns about Luke's eyes and sight loss, in the midst of Grace's speech difficulties and every other issue running around in my head...that God is LEADING me..He hasn't FORGOTTEN me and HE  has me on his mind.

"Yet I will not forget you.  See, I have inscribed you on the palms of My hands." Isaiah 49

Worry

I wish I could shake this feeling of tiredness. I just feel so unsettled much of the time. I am pulled in too many directions and I feel not effective in any one area. It is frustrating. This month especially has been difficult. I think three of the five of us have been on antibiotics. I have filled more prescriptions that I can imagine and have managed 7 to 8 trips to various doctors. I wish I could have the luxury to just focus on the kids and the house. Gosh...it is a full time job in an of itself. With the medical and the therapies and the follow through it is so much. It seems any time Mark and I have together is a medical appointment for one of the kids. It's difficult to keep asking for someone to watch the kids after you feel like you ask them so much.

Can I be honest? I just feel like I am FAILING at EVERYTHING. I sit here in tears as my house lays in shambles because I can't seem to find the energy. Medical records need to be organized, the fridge cleaned out, carpets cleaned, bedding washed (again), etc., etc. It's hard to even unload the dishwasher when you have a baby that won't let you put her down. I took on a mentoring case through the Division of Children and Family Services this month for extra money and I have an interview with the Evergreen School District to work part-time at the Early Childhood Center (teacher special ed to 3 to 5 year olds, like I did with VECC). It is just a 2 month position. It sounds crazy, but financially we are treading water with some big expenses looming over our heads. We need a new roof, the car needs new tires, the van needs new tires and timing belt, Mark needs braces (not for cosmetic purposes but to help save his teeth from breaking down). I lay in bed at night and WORRY about where this is coming from and feel that it is my fault we are in this position because I chose not to return to work this last fall. So, I guess I take the responsibility on that I am the one that has to fix it. I don't know how it will all work. One sacrifice for another I guess. How do I make it all work? This is where I wish I could still call my dad on the phone and ask for help. He ALWAYS had an answer. Gosh I really miss him.

My HEART is with my KIDS and HOME. Luke requires so much. I am not complaining but stating a fact. There is NO manual that tells me how to raise him with MANY special needs. Currently with him I am managing 4 medications, glasses, a listening program (to help with sensory issues), glaucoma, tourette syndrome, adhd, microcephaly, his IEP re-eval, karate and OT. He needs extra help with homework and help being tutored with his handwriting. I LOVE being his mom. GRACE is doing well, but will be starting speech therapy on the 14th. She needs extra help with handwriting, needs extra attention. She is in ballet. ISABELLA, is on her third ear infection in 2 months, cut 4 molars, and needs my attention too. I haven't slept well in weeks.

I just want to feel like I can be successful in one area of my life instead of just "putting out fires". This was my day today...Left house at 8am to take Grace to school, got home took Bella to Albertson's to stock up on cereal and milk since they were having a great deal this week. Ran to post office to mail off World Vision Stuff, and mail off first part of adoption support re-negotiation for Luke. Paid PO Box fee. Luke went to the doctor for possible ear infection. Ran Bella home, handed her off to dad, changed clothes and went to MVCC for work teaching computers. Came home to an upset baby who proceeded to cry off an on till bed. Yesterday consisted of taking Grace to school, got home took Bella to 1 year check up. While visiting with doctor about Bella, talking about issues with Luke and getting some updates for him. Bella 4 shots and one iron check. Unhappy baby with an ear infection (still). Grabbed lunch on the way to pick up Grace from kindergarten. Got home took down some Valentine decorations, left to pick up Luke from school. Drove to Legacy Salmon Creek and participated with him in therapy. Bought him snacks when it was finished. Went to Target on way home to pick up Bella's prescription. Arrived home at 5:15pm, let Grandma go. Cooked dinner, 3 baths, homework, 3 medications and finally asleep kids. My question is where in the heck do I find time to squeeze more work into that. I could recap Wednesday, but it would be just as a crazy. Sigh. Maybe I am just venting. And thanks for reading if you have made it this far. My heart is torn and I am just looking for answers. I guess it is true when they say "No one can have it all". I just wish I could find a balance. I really wish we had a MONEY tree out back or I won the lottery. :)

I will keep praying that the State of Washington finds favor with my renegotiation for more adoption support. Maybe I can apply for disability for Luke? I don't know. I have been thinking about simplifying to help cut costs. We are also selling the truck. It will help cut gas expense and insurance. Any more IDEAS?