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.  

The Dahlhouse: Week #19~The Call No One Ever Wants to Get

Waiting for biopsy results,  is a nerve wracking experience.  So when the doctor's phone number flashed on my cell phone screen, I immediately knew this was not good news.  I got the call I had been terrified of getting for years.  The call that I have cancer.   He informed me that the mole I had removed off my arm was benign and one mole off my shoulder was Melanoma in situ.  In situ is classified as stage 0, meaning the cancer is sitting on the top of the skin.  It has not spread, and it is all in one place.  The treatment is surgery to remove more skin surrounding the melanoma and test for clear margins.  Once the margins are clear, the follow up treatment is more frequent skin checks.  In one five minute phone call, I found out I had cancer and was scheduled for surgery the following week.  My head was spinning.

I had a few days of a pretty good pity party.  I vacillated between being extremely thankful it was caught so early, and feeling angry and scared (mom to four kiddos). 

Tuesday, May 9, Mark and I went in for my surgery.  The doctor removed a lot more skin than I was expecting.  Here I am all marked up so the surgeon knows what is being removed.  They used a special light in marking up my skin.  My poor eyes, I had only had one break down in front of the doctor by this point. 

*NOTE: We choose not to tell our kids about my skin cancer at this point.  They know I have moles removed, as this has been happening since I was a teenager.  They knew I had have some additional skin removed but for the time being...they don't need to know.  Especially since I have two kiddos with anxiety disorders.  If you know our family personally, please do not mention this to them as they won't have any idea.  Thank you so much!

Here was my shoulder the night after the surgery.  Out of all the difficulties of this process, not being able to hold Matthew with my right arm has proved the most difficult challenge.  After the skin was removed...I found myself waiting again.  For pathology results.  Waiting to heal.  It has been a lot of waiting. 

I think that one of the most interesting lessons I have learned with all this is that life continues and moves on.  It didn't stop because I found out I have skin cancer.  I continued to teach classes, carry Matthew with one arm, go on a field trip, take the kids to a rabbit show, laugh, go out with friends. 

We even sold our Honda Odyssey during this time period as well. 

I celebrated Mother's day with this sweet girl and her class a few days after surgery.

The three olders and I went to a rabbit show at Clark County Fair Grounds. 

I even sported my 4H shirt and had a pretty good day being with my kids. 

At the end of week #19, I was still waiting on the edge of my chair to hear if things were "all clear" or if I was going to have to undergo another surgery. 

5 Things About Being A Speical Needs Mom Revisited

Out of every 5 households, 1 child will have special needs, which can be a physical, cognitive or medical disability.  That's about 10 million children in the US.

Luke is one of those kids.  Grace is one of those kids.

Luke has several disorders.  Early childhood onset glaucoma, microcephaly, ADHD, Tourette Syndrome, sensory integration difficulties and visual and auditory processing needs.  After many, many doctor's visits they have determined that there is no syndrome that links anything together, but that Luke kind of hit the lottery, so to speak, of congenital issues.

His disorders (or special needs) have caused medical and developmental problems.  He has been in physical, occupational and social therapies.  He has had 3 ear surgeries and heart surgery to close a hole in his heart, CAT scans to look at his small head, eye procedures, music therapies, and behavioral therapies.  He has been through more doctor specialists than I can count or remember.

Grace has obsessive compulsive disorder.  We have been through a lot of testing to rule out certain things.  She struggles with academics but gives her best effort.  At the onset of her diagnosis we went through two and half years of therapy to help her with the anxiety. 

Raising a special needs child, is a blessing and a challenge.  It is rewarding and trying.  It is inspiring and defeating.  It is like you can't have one without the other.  You take the good and the not so good.  I sometimes long to feel "normal" but have accepted that my "normal" is "not normal" and I am ok with that.  Many people will tell me what an excellent job I do with Luke and Grace, and how blessed they are to have parents "like us" but I often feel I am just so blessed to have them in my life.  I don't feel like I am anything special, and most days I feel that I am just "not good enough".  I yelled when I shouldn't have or didn't do enough activities with them.  I fail on so many levels, but I am human.  I am a mom.  A special needs mom.  Mainly though I just like to be known as...Luke's mom and Grace's mom and Bella's mom and Matthew's mom.  As a mom of children with special needs, I often feel a myriad of emotions.  I wrote a post like this one four years ago and I wanted to update where I am at now and share MY "real" honest thoughts about how I feel as a special needs mom.  Maybe you can gain some insight into how it is to be a special needs mom. :)

1.  I am tired...just being a mom is exhausting.  Especially to little ones.  However, parenting special needs children takes things to another level of being tired.  On top of the "normal" parenting things you do with your kiddos, you add therapies into your schedule.  While they may attend formal therapy once a week, there is practice and things to do at home several times a week.  We may visit doctors and specialists several times a month.  Sometimes I feel I live at the orthodontists office, especially now that Luke has braces.  As a kiddo with sensory issues, Luke often has a difficult time with all the weird stuff in his mouth.  Last month, we had a big check up on Luke's eyes at OHSU.  Matthew had a 9 month check up, and there were a slew of other doctor appointments including chest x-ray's for Bella.  If its not the medical needs it is the educational needs.  I have been fighting (what seems like a very long time) to re-instate Luke's IEP (Individual Educational Plan).  I finally have a meeting to begin the evaluation process on Monday.  I keep emailing, I keep advocating, I keep fighting even when there seems to be no fight left in me.  I am ALWAYS advocating for him and Grace and Bella in all realms of life and making sure each child receives what they deserve and need.  The NEW news is that Matthew is about to undergo a full developmental evaluation due to the fact he has some issues that have concerned me (I've only told Mark and my mom).  I took him to a screening and he is being referred on to the Infant Toddler Early Intervention Program.  And while I am thankful we live in a place that has such programs, I am concerned about the thought of added therapies.  The emotional toll of all I carry, causes me to be tired.  I am a worrier by nature and I spend many hours thinking about my kids and trying to come up with possible solutions, new therapies, researching, praying.  Some of my recent thoughts include: what new foods can I give Matthew to help with his sensory issues, what can I do to encourage him to try saying new sounds, how can I help Grace and Luke be more organized...(just to name a couple). 

 2.  I am jealous...I almost didn't put this one down...again.  You can read my post four years ago about what I was struggling with here.  I thought about this again, and sadly it is still SO true.  I don't want to admit that I am jealous, and I thought perhaps in the last four years I have grown and this no longer applies.  But I am being HONEST here.  I feel jealous of moms whose kids can play on typical sports teams, school sports teams or have children that don't always finish last with physical activity.  I feel jealous of moms who don't have sit beside there children and coax them to try their homework, and then don't have to email all their teachers to let them know what they didn't complete.   I feel jealous of moms that can go away for a weekend.  I tried to go away for two nights to an adoption retreat.  Oh how I needed it.  But, I made it one night before one of my children ended up in the ER and I came home.  I was so glad they were ok, but I cried for a couple days because I felt so disappointed that something I looked forward to for so long (the retreat) was over for another year.  I am jealous of moms that have a dozen babysitters on speed dial (or even one).  I get that we have four kids and it is a lot, but having a babysitter that was available would be amazing.  I keep praying about this.  My kids are so wonderful, but they can be difficult.  My mom has been very helpful watching the kids and offering to watch the kids (which I appreciate more than I can express), but she works full time and is tired and sometimes we need someone last minute.  In the last four years, I have also experienced jealousy of moms who still have there fathers.  I miss mine everyday.  Anytime I watch a father hug his daughter, it's there...jealousy.  I just plain miss mine.  He was always full of great insight, help and support.  I grieve still that he isn't here to have a relationship with his grandbabies.  He would have been and amazing grandpa.

3.  I feel alone...  Most days I spend completely alone (with my kids).  I am more comfortable in this role than I was four years ago, but I would still echo as a special needs mom I feel alone.  Mark works a weird schedule these days, so when he goes to work in the morning I don't have much contact with anyone who isn't a therapist, a school teacher, a doctor or specialist.  I try and visit a friend once a week, but it doesn't always happen.  I could use the support of other moms with children who have the same type of issues.  That is why the Called to Love Retreat has been so wonderful for me.  I can physically see that I am NOT the ONLY one who is walking this path.  We recently began attending a new church, and I am happy to report that there is another mama who is walking my same path at church. Which is an amazing blessing! I am hopeful that perhaps we can connect more because I could sure use her friendship.   

4. I am human...I am not a saint, even though well meaning people do try and tell me I am.  I have bad days, off days, days I feel like I am failing and think I am not doing a good job.  Being a special needs mom has really re-shaped my life in many, many good ways.  Luke and Grace have helped me discover who I really am.  I have realized that I am a lot stronger than what I thought.  I have learned to be pushy, confrontational when I need to be, how to fight, speak and advocate for those who cannot.  In the past four years, I have also learned that I have limitations, and it is ok to admit when you need help.  I am in therapy currently for anxiety/depression, and I sought out the help of a doctor and I am on medication.  I am human.  And I am ok with it.  Both therapy and medication have helped me in a huge way.  I no longer spend everyday crying, I don't feel like I am the verge of a breakdown, I am not in a constant state of worry, and I am not over analyzing every weird twinge or symptom in my body.  I still have dreams of things I would like to accomplish, but for now I would settle for reading a book, painting or going to the spa. (A mom can dream right?)

5. I am scared...This one is difficult to admit too...still.  While I don't dwell on this thought too often, it is part of raising children with special needs.  I am scared that I won't do something or find the right therapy for them.  I am scared Luke is going to be blind someday due to his glaucoma.  I am scared I won't know the right things to say when we talk about their adoptions or know how to answers their questions?  I am scared I am not doing enough or that I am doing too much?  I am scared when Luke goes to school that other kids are mean to him, or he doesn't eat his lunch cause he talks too much, or that he isn't following the rules.  I worry Grace isn't turning her work in or she is distracted.   I am scared that time is going by too quickly...moments are passing I won't ever get back.  Have I been enough? done enough? loved enough? advocated enough? taught enough? played enough?

My life is forever changed (for the better) by raising Luke and Grace (and Bella and Matthew too).  They bless me in ways that I can't explain.  When I look into Luke and Grace's eyes, and I see how happy they are, and then I think of the alternative (which I can't describe), I am blessed....a hundred times blessed...to call them all mine.  Every time I break up an argument, model appropriate behavior, remind him "he is not the parent", ask her to "finish the job," tell them "no" or the million other things I do, I remember that God according to His plan choose us for them.  I don't take that lightly.  I was called to this "position"...to take up my weapon and fight for those who cannot.  I know that the mere existence of Luke and Grace is a promise that God has a BIG plan for their lives.  I really believe it.  So even though it may not look so pretty in the trenches, I am there, I am fighting.  I am real.  I am THEIR mom. 

Letter To Myself About Depression

Dear Carissa...I know you are in there somewhere.  In the mist of the crazies of life, the day-to-day kayos, errands, chores and the endless to-do lists of things that must be accomplished...I know you are there.  That twenty-something person who was so independent, creative, courageous and strong.  Yes, you know her...the one that used to rock climb, write children's books and curriculum and take risks.  The one who didn't worry so much about life.  The one that wasn't overburdened by the weight of the world.  She's there...deep down...somewhere.

I want you to know that you are much too judgmental of yourself.  Your perfectionism is draining you.  It will be your greatest undoing.  You do not demand or expect perfection of anyone else...only yourself.  Truth...no one is perfect (not even you)...so STOP!  STOP IT! REALLY!  Stop setting impossible standards for yourself.  Remember to breathe, drop your shoulders, look people in the eye...heck just look up and smile more than you do now.  Except the fact that your house is never going to look like a magazine picture, the laundry is rarely going to be finished, and the bathrooms will not always be sparkly.  It's ok.  I give you permission to let baskets of dirty clothes sit in the laundry room, to not constantly wipe up sticky finger prints that mark the mirrors, and to leave some dishes in the sink yet to be done.  Life will continue. 

I get it.  I know you feel lost right now.  The world seems so mixed up and upside down.  You feel...dare I say it..."depressed" and it is difficult to accurately describe what it is that you are even depressed about.  And I know you...so I know that you feel ashamed that you are depressed.  Because you are supposed to be "perfect", and not have problems and look like you got it all together.  But the truth is you don't.  You feel that depression is a sign of weakness, or ungratefulness, or lack of faith.  It's taboo.  Talking about the "d" word with others is tough.  It's not a comfortable topic.  You wish they would hear you.  Really "hear" you.  You look around and feel trapped.  Wall surround you.  There are no easy answers or solutions or quick fixes.  You see the destination of where you want to go, but doubt if you will ever end up there. 

Sometimes you don't feel anything at all.  You stuff your emotions away deep inside.  If things are going badly, you are reminded to be thankful that you don't have it worse because others do.  And while you concur and recognize that fact, you feel invalidated that you aren't allowed to have any type of emotion because you are "blessed."  And I understand that your heart aches.  I see the frustration you feel.  I would just encourage you to "don't stop feeling."  Even if the feelings are sadness and hurt and dare I say the "d" word.  Because Carissa they are real.  What you feel is real, and valid and true.  You are the only one that can live your life...so have the courage to really live!  And part of life my dear is all the crazy emotions that go along with it.  And...I'll let you in on a little secret...those emotions don't make you weak or broken...they just make you human!

The voices you hear (and yes everyone has internal voices and dialog that bounce around in their brains)...the chatter around you...it's loud and distracting.  The voices that say you aren't good enough, you are a failure, you are nothing...they are never going to go away.  But...you have the power to STOP them.  To shut them up.  To be in control.  You have in in you to make choices for you!  And not choices to please anyone else.  Let the voices fade into the background.  Let them go!  Have the courage to follow you heart and your gut and anything else that is telling you something.  Listen to those feelings, because they are almost always right.  The decisions in your life that really matter...the ones that will be forever linked with you...you went against the crowd, and against what was popular and easy and YOU WERE RIGHT!  Because you trusted you.  You had faith.  You had courage to take a stand even if you stood by yourself.  And guess what? You have that same faith, and that same courage in you now!

Carissa...as Grandy would say "this too shall pass".  So today if you feel depressed, or tired, or weak, or sad...acknowledge the feeling, it's ok.  Your feelings do not define who you are.  You define who you are.  You won't feel this way forever.  You are processing and working it through.  Trust yourself.  Think outside the box, dare to live, laugh out loud, embrace you children,  love your husband.  You've wasted far too much time already worried about what others think.  You are able to think for yourself, and have confidence that you are capable and able to make the best decisions for you.  Love yourself a little or a whole lot because you are worthy of being loved.

Oh...and one more thing...raising kids is tough.  Raising typical developing kids is tough enough, but raising special needs kids is a whole other ball game.  Cut yourself some slack.  You do a very, very good job with your kids.  Remember...you can't ever be the "perfect" mother, it's not possible, so accept it and move on. You don't have a "manual" on how to do this and unfortunately you don't really have very many example of adoptive mom's raising special needs kids.  So you do the very best you can.  Accept the fact that sometime you are going to screw up, and keep walking forward.  Trust the process.  Love more, let more things go.   Remember... the days are long , but the years are short, and you will NEVER, NEVER, EVER get MORE TIME.  You have your allotment of time and that's it.  Make good use of it.  Slow down and watch, look and listen. There is wisdom in the depths of your children.  There is magic in childhood.  There will come a day he won't ask you to play cards anymore, you will be the one asking.  There will come a day where she won't stick play-doh in little glass flower vases, and then the day will come where there won't be any play doh at all.   There will come a day where there will not be any pretend dance shows...so remember that fact when you think about saying "not right now."  Instead say "YES".  You won't ever regret saying "YES".  Yes to them, yes to him, yes to life.

*I wrote this letter to myself as part of my assignment in therapy.  I've been in weekly therapy for several months to learn how to recognize and respond to anxiety and depression.  This one was difficult for me to share as there is a vulnerability to it.  But I really wanted to address that depression is real, should be talked about more and can happen to anyone.