Saturday, April 2, 2016

Our Special Needs Journey: Part 28 - Healing, Health, Birthdays, and Bullies



The last couple months have been VERY long.  Here's an update on each kiddo, what we've been up to, and how we're all coping.
-------------------------- JULIA ---------------------------


Don't be put off by how discouraging Julia's update is - the rest of our updates are pretty good. I'm just getting the not-as-good news out of the way first.  Because Julia is older now I am trying to be more judicious with what I share about her (& Taylor).  Even then I will overstep the boundaries I'm sure. It is fair to say she is where most of my special needs struggle lies.

Above is a photo of her in the hospital this week.  She was the first of the kids to get sick. After several days of high fever we thought she was on the mend after her temp lowered.  While walking down the hallway she abruptly fell to the floor.  She fainted 4 times in about 3 minutes with no recollection of what was happening.  Elijah helped me pick her up when she fell and I called the Pediatrician.



They said dehydration and fever alone was unlikely to cause fainting and it could be more serious like a blood infection or heart condition.  Since Dean does have a heart defect we've had the other kids tested already but we took her in to the ER as we were instructed.  The good news is it wasn't something worse - final verdict was severe dehydration with febral seizures brought on by the fevers.

 There has been some intense cyber bullying.  Multiple fake Facebook profiles were created to harass her (yes, despite privacy settings). They had very crass words for not only Julia but for Dan and myself in messenger.  Eventually they stole her profile photo and used it to create another fake profile to bully her from.  They captioned the photo "this bitch ugly as fuck and be diggin in her vagina."  Yup.

I share a SMALL amount of what was said to really drive home the impact of how hurtful cyber bullying is and how far reaching its affect can be.  Yes, we reported many things to Facebook but overall they did not care.

This led way into a conversation about bullying when she was in 1st grade and attending public school.  The short story is that the older boys convinced her to take off her pants and underwear on the playground.  They said they were going to kiss her crotch but the recess monitor stepped in.  She still retains hurt from this incident and recalls the events easily from memory.

In which my heart aches for my little girl. Seriously, who are these cruel people? How badly must they be hurting themselves to be causing others so much hurt? As the recipient of bullying many times I know how deep and long lasting the impact is.

There are many, many wonderful qualities she possesses but they have not been shining bright lately. I know she's struggling; even so, this is hard on the rest of us.  She's been mean (to her sister, parents, PCAs, therapists, etc).  Especially if I ask her to brush her hair or wash her hands.

She shuts down completely.  She made so little progress in her individual therapy that the therapist almost GAVE UP until I suggested I attend sessions with her.  We are struggling to help her.  I am having a difficult time with finding the balance between accepting her limitations and having high expectations.

Take a particularly miserable swimsuit shopping trip (here's where I won't share all the details) where her sensory issues, rigidity, anger, and autism were on full display.  Even her therapist and I at the end of the session were unable to find a solution.  I've been so discouraged. Her Day Treatment therapist seems to be breaking down some walls though!

Julia had her repeat sleep study done a few weeks ago.  She wore the atigraphy watch for 2 weeks followed by an overnight sleep study and a nap study the entire next day.  Dan said she was ripping the wires off as they would put them on her and refuse to wear them so it took FOUR HOURS to get all her wires on before bed.  Total hell.  It was worth it for the results! They were able to rule out narcolepsy (still has sleep apnea)!!


---------------------- BRUCE -----------------------
February is bookended by the boys' birthdays.  We celebrated Bruce's 3rd birthday (on Feb 2nd) with a party at Gramma's, complete with a Spiderman cake and a visit from the hero himself (Uncle Robert)!


This has been an eventful couple months for Bruce! Birthday boy shows off his cupcake.

He's been progressing SO much! He speaks so much now, his expressive language is developmentally on track and we are working more on the articulation piece of it.  Another OT session was added to his week at Fraser BUT in his in-home behavioral therapy we will be decreasing to biweekly soon. So, there's a good balance there.  It's encouraging.

He was approved for PCA hours as well!! I had no idea he would qualify but the nurse said he would and to set up an intake and find out.  He did! So, that's pretty neat. I am grateful DAILY for the support I have in my life.  We are a lucky family to have so many people who love us helping raise the kiddos.

Side note: To the "friends" that says I do not have special needs children but rather am just a shitty mom and make things up -- you do not get services such as PCAs and therapies if the EXPERTS do not allow it. So let it go. Quit wasting time being hurtful and trashing me. You know who you are. (Like the passive aggressive thing I did there?)



I digress. The other highlight of Bruce's month was his stitches.  This daredevil was bound to need them at some point; these were the result of running and tripping in the hallway.  He was a total trooper about them! He did insist on wearing a bandaid for a few weeks though.


Me: WHAT happened? Who drew on you?!
Bruce: Me did it.  I have a ustash (mustache).
Me: That better not be PERMANENT marker!
Bruce: It is! It is pemem ar-ar Mom!
"I did it right, Mom!"


Here's Papa and Dean riding the Pepsi Streak coaster at Nick U for Bruce's birthday. 

Bruce on rides at Nickelodeon Universe.

-------------------------- DEAN ----------------------



We celebrated 7 years of having the kid with the infectious smile in our lives with a rainbow cake (of course) at G&Gs.  Dan also took Dean and the girls to the Waterpark of America for his birthday.  Dean wanted nothing more and asked about it for months! I scored a great Groupon deal and they spent the whole day there.

Dean's birthday collage. 


Dean, along with the other first graders in Sunday School, received his very own Bible! He's been successfully memorizing verses for Awana! There has been a little regression at church with me doing the drop off more often (now that I am not too sick to).  It's to be expected I'm sure. 

On the encouraging side: He is meeting some of his therapy goals and moving on to new ones.  His social skills have been improving.  There is a ways to go, yes, but that does not diminish how far we have come! Another OT session was added to our collection of weekly Fraser appointments.  

He was finally willing to let us cut his hair so we took advantage and buzzed it all off.  He quit cooperating so it looked a bit like Gollum at first, but it's evening out now.  I LOVE how he is playing WITH Bruce.  Not alongside him but interacting with him, playing imaginary games with reciprocal back and forth play!  

Keeping his attention for long and transitioning him into his school day remain the most difficult elements of homeschooling for me.  So glad he catches on quickly and gets involved once we're set on the right track. 

He's currently on the outs with a high fever.  Whatever he's sick with has been cycling through the household.  Julia's currently on the mend after a very scary ER visit.  He's also had seizures the past couple of nights. So I'm watching him closely and he's not looking good.   

-------------------- OLIVER --------------------

Not all of February's birthdays were joyous occasions. Oliver Joseph Krube was born into God's hands on February 20th, 2016.  After a healthy and promising (albeit painful and anxiety ridden) pregnancy we learned he had passed away at almost 18 weeks due to the umbilical cord being wrapped around his neck.  If you want to read more of his beautiful story, visit this post.



In my few precious hours with Baby Oliver I held him close - I had carried him every moment of his life.  I held him in this blanket and was given this stuffed bunny to bring home when I had to leave Oliver behind.  I LOVE how attached Bruce has gotten to the bunny in the weeks since his passing. 

--------------------- HEALING -------------------------

First post-pregnancy date. It's a really important part of taking care of you marriage after miscarriage. 

A way we healed our grief together as a couple was to add to our tattoos.  Bentlee was our stillborn daughter and we had her name and pink feet done 5 years ago.  We couldn't NOT add Oliver's name! I included 11 butterflies to represent our 11 angel babies - as the butterfly is the universal symbol for pregnancy loss.  I'll add sunshines for my living kiddos when I have recovered from the pain of this one!  Admittedly the pain was somewhat therapeutic.  Once a cutter, always the struggle is there.


Dan's was more elaborate as Bentlee's name went over his entire forearm and only adding Oliver's name looked a bit off.  So he went for a half sleeve look and covered the entire lower arm.  Oliver's name and a blue baby foot were added as well as 9 more baby feet.  He has always wanted a lion (sorta like Daniel in the lions den) so our friend who designed & did the tattoos made a daddy lion, a mommy lion, and 4 baby cubs playing (our living children).  


In an effort to find a healthy outlet for my grief over losing Oliver (in addition to blogging about it) I've been working out each day.  Pushing myself a little further and longer each day.  I'm so out of shape and my body is just broken from back to back pregnancies (miscarriages) with hyperemesis (major morning sickness), shots, & surgeries.  So it was rough going at first but a month in I'm up to 175 crunches and 90 minute exercise sessions! 

I also scheduled Sugar & Spice photos for May to give me something to look forward to (since I won't be having a baby).  {BTW: Most fun ever.  Hair, makeup, sexy photo shoot.  Several of my photos are even featured on their website from my last session.} This is an added incentive to keep working out (since they are nude photos and all), eat healthier, not self harm, and to care for myself and my physical and mental health.  Great healthy outlets that are really working! I'm doing really well. I should thank my huge support system for that too! {Thank you for all the cards and meals!}

Speaking of my mental health, I'm starting a new group therapy class next week.  I've done individual therapy for years and was in a DBT skills group class. This is a next level Processing group. Living well with any mental health disorder requires maintenance.  Not leaving myself vulnerable but rather held accountable.  

I want to break the silence on mental health disorders.  Christians DO suffer from depression and other issues.  Getting help shows STRENGTH, not humiliation or weakness. Be a warrior - speak out, get help! It can be very embarrassing for me to be this vulnerable and open (with strangers AND those I know) but I know it is important to speak out.  If you wonder why I share so freely it is that I pray others are positively impacted by my life.  

I'm in a great place now but I have also shared times when I WASN'T doing so well - but was confident I'd make it to the other side because I have a great, big God who is always in control. And I did. Every time. 



Healing as a family simply involves moving forward with life.  Not stuck in The Dark Place.  Our life is a pretty great one, albeit a little busy.  We still have a couple dozen appointments each week plus running to youth group, karate, and getting our schoolwork done.

These photos are from Tech Fest at The Works Museum. 


The superhero photo booth was a big hit with the kids!

It had been a couple months since I was well enough to take the kids to the zoo!


Bruce had such a good time at the Science Museum he was asleep before our snapshot in front of Rexy.  


-------------------------- TAYLOR ---------------------


 Her attention, spaceyness, moving slowly (& other ADHD symptoms) continue to be a challenge for both her and me but is otherwise showing major improvements!  She has even graduated from her group social skills therapy!! Her therapist and I had a very encouraging conversation about her progress and further areas of need. She had a friend sleepover recently AND went on a weekend long Winter Retreat with her church group.  A lot of big steps and age appropriate behaviors!!

She's also currently sick and has also been having very painful cramps.  We will need to go in to the doctor to look into that - a follow up for her PCOS was needed anyway.  She continues to have some pretty epic panic attacks that we are working through together - they continue to be mommy daughter bonding moments.

 --------------------- THE REST ----------------------

 After 7 years of faithful service to our family (and 7 more prior to that with my parents) we said goodbye to our Little Engine That Could and HELLO to my new-to-me Honda Odyssey.  It was our entire tax refund but my van was days from death and we needed to make the investment.

In addition to our arm tattoos Dan and I got matching wedding ring ink! The cross where the 2 hearts intersect symbolize Christ at the center of our marriage.  How else could 2 teenagers make it 15 years?!

Easter grass, surprise eggs, and Easter-themed colored pasta in our sensory bin.


 Oh, and I rearranged the schoolroom to include the futon.  I'm proud, so check it out: