Monday, February 4, 2019

My Hero

My Dad was a huge fan of my blog.  He didn't have social media accounts so I would have to send him a separate email with the link when I posted a new blog.  He ALWAYS sent me a response back.  Here are some comments:
  • Love you....
  • I re-read it. You should send a copy to the local chamber of commerce AND the Mayors office.... [on our trip to South Carolina]
  • You are AWESOME. Outstanding.... Love, Dad
  • This one was the BEST so far! By the way, unhook your hose in the back yard, drain it and put it in the garage. If you don’t the water will turn to ice and break it. Love , Dad
  • What a wonderful reflection on your babies. Extremely proud of you. Love, Dad 
  • Good job honey. I love you,  Dad 
  • Awesome honey.  You are GREAT. And Luke and Kate are lucky to have you and John as parents, but most importantly,  his advocates....
  • A very smart person told me something. He said, "God will never challenge you with something that you cannot handle". Love, Dad....

I'm struggling how to make this blog live up to the legacy of my father.  He suddenly passed away from "natural causes" at the age of 64 almost two weeks ago.  The shock has lifted but I'm still struggling with the grief.  When everyone goes to work and school I get to grieve but when my kids come home and my wonderful husband rolls in from a long day at work, I try to pull it together.  

My children are young so the grieving process is a little different.  Kate doesn't want to talk about it.  She knows.  She started to cry when I talked to her about Grandpa passing away at home.  I was satisfied with that because there had been no mention of his death from her after that awful night.  Luke grieved harder.  He's a year older than Kate, and he and my Dad were buddies.  I ended up picking Luke up early from school the Monday after his funeral.  He was having an aggressive day, so we left school, got a smoothie, and watched movies.  Every day got a little better for him.

My Dad was totally ecstatic when we told him he was having a grandson. He grew up with two sisters and had three daughters. It was time!  When we received the diagnosis, Dad and I were both in denial. It was rough for us. Dad eventually came around, as did I. Then he went to work - building that relationship with Luke. 

My Dad retired and started helping me out with some appointments with the kids. Sometimes he would just come visit since he lived two hours away until a year and a half ago.   Then he started coming with me to visit Luke’s school.  He sat in on a meeting with the director of the autism school where Luke attended as a preschooler.  He asked questions.  He came to speech therapy and watched him get treatment.

There was a bigger shift when my parents moved here with my sister, Joanne, in 2017. Dad hung out during ABA in our home.  He got to know the therapists. He chased Luke into his treehouse swing.  He met his teachers and played trains and watched gymnastics practices.  They rode in the truck together and Dad made Luke give him a hug every time he saw him.  Every. Time.

I am completely broken hearted that my hero left us too soon.  He lived a completely full life in 64 years.  He died a happy man.  He said a few weeks ago, "I'm not afraid to die.  I'm ready to go whenever God calls me."

I didn't want him to die.  I miss him every minute of every day.  We all do.  He left behind my mom, my two sisters, our spouses, grandchildren, granddogs, sisters, family members, and countless friends.

He built relationships - all different kinds of relationships - in different ways. The different kinds of people from all walks of his life who came to his services or sent their love in many ways proves that. He focused on the person that he connected with and related his life to theirs. I know this is vague but if you knew him, you know what I mean.

I am grateful for my father’s guidance in life. He always told me “he’ll be fine”, referring to Luke. “Of course he will”, I would say. 

I love you, Dad.  See you in Heaven.

Friday, January 4, 2019

An Ode to Rasha

Rasha came into our home during a rough transition.  She was the second replacement after Anna.  The first therapist after Anna left the company after being with us for just a few weeks.  I knew what ABA could be like in our home, because Anna had worked such wonders with Luke.  She transformed him - and I was really nervous, but certainly open hearted to our next therapist.

Rasha walked in with a big smile and a warm heart.  Exactly what Luke - and I - needed.  

During a normal session, I purged information on Rasha for about 15 - 20 minutes.  Up until recently, we have had sessions three days a week.  During the summer, in the mornings and after school all of the rest of the time.  These sessions range from 1.5 - 3 hours long.  We talk about his day, what went right, what didn't, how he was feeling, activities going on, sleeping - you name it.  I sound crazy - but really all of this sets the tone for the session.  If he had a great day, she would push him harder, try teaching him something new, hold back a preferred item until he would answer a question, etc.  If he wasn't having a great day, she might really give him some physical input, play, but still allow him to grow through some kind of teaching or settling in his brain.  She can center him.  Allow him some options to get himself calm.  Like, doing a puzzle or pulling out his favorite trains.  Give his brain something to focus on.

I don't think people in general realize the amount of abuse that therapists take.  Rasha some how can build this amazing relationship with Luke, but was still bitten, drooled on, pushed, squeezed and sneezed on.  Not once did it phase her.  And not once did she make Luke feel bad about it.  
Rough day.  These cards were difficult. We also worked on shoe tying that day and that didn't go well either.
Rasha also has the ability to recognize what isn't working and how we can change the pace.  For example, she understood that teaching Luke something at the kitchen table wasn't the best place.  He does NOT like the kitchen table.  He prefers to eat all meals at our island in his "spot".  Rasha moved session to his spot at the island.  When he didn't want to work there, she moved to the floor with trains.  If a goal (like shoe tying) was too hard, we worked on changing it to a new, more achievable goal.

Rasha also spent time with Kate during Luke's break time.  She embraced Kate as part of our team.  Kate is quite the therapist - and Rasha used her all the time during session.  In turn, Rasha would make sure Kate was included in the fun stuff - like slime play or a new game of Uno.  Rasha also dressed up with us for Halloween!  The three of us girls went as fruit, and Luke went as a SWAT team member!  

We also went on tons of adventures.  We met at the Science Museum, went out for ice cream, and went to a splash pad.  All of these kinds of activities are important for learning to function in the community.  It helps that she is a blast to hang out with, and loves to try new things.  When Luke did something super exciting, like doing something new on the playground or finally embracing the splash pad, her excitement was at the same level as mine.  

She is a fabulous advocate for Luke, recognizing that he has so much potential and tapping into his brain.  She is someone I can confide in and trust.  She has been nothing short of wonderful for us and we will miss her.  I will miss her.

Rasha, all the best in graduate school.  We are so proud of you.  I cannot wait to see what roads you will take in life.  I hope one of those roads is to Gelati Celesti to meet us for a treat before you get too busy <3

Tuesday, January 1, 2019

The Unknown Meltdown

I’m not sure if I’ve ever specifically talked about how John and I handle non-verbal meltdowns.  Tonight, we put Luke down to bed.  About 20 minutes later, I’m carrying laundry up to my bedroom and heard Luke.  Lately, he has been singing a lot, so I thought maybe he was just belting it out.  He’s been signing an unknown song with the word “YYYYOOOOUUUUU” really loud and off key.  I have no idea what it is.

I realized that he wasn’t signing and he was in fact sobbing.  I opened his door to find his sheets wet and his blankets all on the floor.  I went over and held him for a minute.  The sheets weren’t soaked but he had been crying and drooling.  I couldn’t get him calmed down for a few minutes, and John heard him from downstairs so he came up to see what was going on.

Luke doesn’t have major meltdowns like this over nothing.  He’s actually been pretty good about going to bed.  John went around to the other side of his bed to help me strip his sheets, and noticed that his beloved stuffed cats, all five of them, had “somehow” been wedged between the wall and the bed, and had become very difficult to get out.

John saved the cats, one by one, then we got fresh sheets and pillow cases.  We piled in four pillows, three fleece blankets, one knitted blanket, one weighted blanket, five stuffed cats and a sweet, tired Luke back into bed.  John gave Luke a hug after he calmed down.  I turned on his sound machine with lullaby music and  I opened an old school Sesame Street book.  We talked about Grover, Ernie, and Bert.  Luke told me he was “all done” and closed the book.  I left the night light on and kissed him goodnight.

About 15 minutes later I checked on him with our Ring camera and he was laughing about something.  Back to his old self.  He finally drifted off just a few minutes ago.

It helps that we know things that comfort Luke.  We know his favorite snacks, shows, puzzles, stuffed animals and blankets.  The hardest part is getting him to calm down after everything is better.  It’s  like he has to retell the story in his own “words”.  Tonight, he calmed down quicker than normal.  I was surprised he didn’t get back out of bed or want to snuggle with Dad while he was watching the recorded Capitals  game from today.

The unknown meltdowns are difficult but we try to assess what the typical situation is and why it might be different now.  Sometimes I take the treehouse swing down and that can cause an issue because he doesn’t have his little “safe” space.  Sometimes we try something different for lunch and he doesn’t eat much and then he is really hungry later and just asks for junk.  

One of our goals for 2019 is to get Luke to learn to type.  He has a device currently with icons but he doesn’t like using it and it can be especially difficult to get him to use it when he is in a state.

I hope your year is low on meltdowns, and high on calm nights.