Life @ The Dahlhouse: Week 2

Not surprising, I already find myself very behind on weekly updates!  This was a goal I had this year... to consistently update my blog so that I have record of the events.  Are you like me, already struggling with your new year's goals?  The struggle is real!  

Week 2 was CRAZY friends!  Monday came and BAM, 4 appointments that day.  Who does that?  I never plan on that happening, but sometimes, once in awhile, all the stars align.  LOL.  That Monday we had an orthodontist appointment, two doctors appointments in a row and a tutoring appointment.  I was wiped out.  And that little cherub spent a lot of time in waiting rooms that day.

Do you ever go through a season of life and you feel like it is a difficult one?  I am right there with you!  I told Mark the other day that we are in a tough season.  There is something BIG going on with everyone of my kiddos, and I am left feeling like I am just not ENOUGH most days.  How do you spread yourself out?  How do you make sure each one has there needs met?  Regardless, I get myself out of bed each morning and try again.

 #truth

Miss B has been REALLY struggling.  Anxiety has set up shop in her little mind.  I'm telling you, it is like looking at a childhood version of myself.  So many of her struggles I relate to so much!  Separating from me leaves her almost panicky.  I leave her in the classroom each day, and walk home in tears myself.  I never let her see me cry, but I fight everything to not scoop her up and take her home with me.  Does anyone have any suggestions that help kiddos with anxiety?  I am all ears!

 Some days are the perfect storm of organic applesauce and fast food chicken nuggets, while we sit in high school algebra class with the oldest.  I am not great at math.  I don't know much algebra.  But me showing up for him, that is the most important thing.  Even with a toddler in tow, who poops in the middle of class, we want Luke to know we are there for him.

*Luke goes to an AMAZING alternative learning school called River Homelink.  He attends class two full days a week and does classwork at home three days a week.  They are very parent welcoming and encourage parents to participate and even bring our pooping toddlers with us.  Haha!

Do you ever bribe your kiddos? If you do, you are MY people!! Confession, I bribe my kids!  To help Miss B get through the day, I promised her we would make cake pops.  So Friday night we made cake pops.  They are surprisingly easy to make.  They just take time, and make a slightly big mess, but WORTH it!

I ended the week at a VIPKID local meet up.  VIPKID is the online teaching company that I work for. It allows me to make extra income working around my schedule.  And as we know, I need a flexible work schedule (four appointments in one day). I teach English to Chinese students in a 1:1 environment.  I share more about my experience on the VIPKID page tab.

If you have ever wanted to teach online, ESL or work with VIPKID I would love to help you through the interview and hiring process.  Simply click this link VIPKID APPLY  .  Then send me an email misscarissa@hotmail.com, and let me know you applied and I will be in contact with you within 24 hours.

"Life is tough darling, but so are you."  ~Stephanie Bennett Henry~

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!

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.