For the love of EO's

Christmas 2014

Mommy and Lukie Jan 2015

 

This past year has been a whirlwind of stress and craziness. I finished my Master's Degree in Special Education with a specialization in Applied Behavior Analysis in December 2014. 2014 was a year full of stress and tears for me. I pushed myself beyond what I thought I was capable of. I achieved what I thought I was incapable of and discovered that I am actually smarter than I thought. Luke, and my other three children, provided the inspiration needed to push myself.

 

Even with all the stress there were so many things that gave me strength. My husband, for one, provided inspiration. I came up with the idea to build a miniature cabin for Luke. Marty made my idea a reality. Here is the cabin...

 

 

 

Marty built this thing with God-given intellect and talent. He put so much work into this thing. Luke LOVES it. Marty breathed life into my idea. This is not the only thing he has created to meet the needs of our precious child. He has created more. I will share when I get the pictures downloaded on my computer. My sister Rhonda provided the soft blanket for Luke to lay on while in his cabin.`

 

 

While sitting by a fire the other night...

 



 

 

I couldn't help but thank God for where I am. I worked so hard during the year of 2014. I pushed and cried and learned and succeeded. I caught a vision of what God put me on this earth for. I gained the understanding of why I am here on this earth. In 2015, I would take a huge exam that would give me the power to do what God wants me to do. I would take the board certification test for behavior analysis and I would also take steps to serve in my local community.

 

 

AND EO's??? EO's are essential oils. When my mom introduced me to essential oils, I was actually quite skeptical. What in the world could essential oils do for me??!! I thought it was so ridiculous. Then... I tried them! Within 2 weeks of using them, I was sold. Lavender helped me with anxiety caused by pursuing my Master's and having children and having a job. Lemon added a fresh, sweet taste to my water. InTune helped me focus on the task at hand. Honestly, I truly believe that my faith in God and my use of essential oils got me through 2014. Silly, I know. True, non-the-less.

 

 

I am looking forward to posting more in the near future. God is good and essential oils give sanity to a crazy life. 



Emotions. Stupidity.

I cannot seem to focus for the life of me. I am in a funk. It's almost as if I am going through the stages of grief again with Luke's situation. I am floating somewhere between sad and angry. I guess I am overwhelmed. I spend all day, every day, taking care of other people. These people need love and care and dedication from me. I do not receive anything back. I try not to expect to get anything in return for my dedication and work. I just find myself feeling completely worn out and desperate for... well, honestly, I don't even know what I am desperate for. I guess I can say I need TLC.

So, we now have a complete diagnosis. The diagnosis is really three separate, but linked, disabilities- 1. chromosomal deletion syndrome, 2. Intellectual Disability, and 3. ASD (Autism Spectrum Disorder). I am happy with the diagnosis and I feel that it will meet the needs for gaining specific services. So, now Luke is eligible to receive ABA services, but our insurance company does not cover ABA services... yet. This totally pisses me off (excuse the strong language). BCBS state-level covers therapy. BCBS federal does not. I have seen children who were at the same developmental stage as Luke make great gains with ABA therapy. So, yet another wall. Stupidity. I saw something that said that raising a child with autism will cost approximately 2.1 million dollars over the child's lifetime. That is the reason that insurance companies are resisting providing coverage. I would like to calculate how much an average person pays out to insurance companies each month during their lifetime compared to how much an average person costs. I am just curious. I bet there is some data out there on that. I will google it :)

It's been a while since I just wrote out everything I am thinking and feeling. I have just been burying it. I have been too busy to allow myself to process my own thoughts and feelings. Now, I just really don't have a choice. Emotions are starting to overflow, so I need to bring myself down to earth.

The biggest challenge I am dealing with right now is how lonely I feel. Family life is busy. The three older kids are all going in different directions and need a lot of parental guidance while in their tweens. Marty works two jobs and is gone at least 60 hours a week. I am working 30 hours a week, but with drive time and everything, I am gone 40-50 hours a week. Marty and I have not had alone time in almost a year and it is causing some issues in our marriage. We feel so distant from each other. I feel like I am fighting the Luke thing alone. Marty and I both have a lot brewing on the inside and we basically don't communicate anymore. It's really a tough time right now. We are desperate for alone time, but see no relief in sight. Money is tight, time is at a premium.

The second issue with my feeling of loneliness is that I feel scared to develop friendships. For one, ladies my age have children. Like the ladies in my Sunday school class have children- beautiful, neurotypical children. It truly is impossible for them to understand how I feel as a parent. I am totally understanding of this. I don't know. I just have a problem accepting the challenges that I face. I guess that is why I am so comfortable with the population I work with. I understand what challenges each family face. I live the life. I don't have to be faced with what I could have- an almost 7 year old boy who walks and talks and does boy stuff. I grieve for that.

I may need to write more later.

Some updates...

Here are some pictures that have been taken over the past couple of months...

 

Easter 2014

 

New Skills...

 

New Favorite Outdoor Activity

 

The lining up of his favorite objects... Yet another sign

 

The first five months of this year has certainly flown by...

 

Several months ago Luke's doctor ordered some blood work for genetics. This time the results showed a microdeletion. "An approximately 413 kb loss of 4q25 was detected". Deletions in the fourth chromosome typically go along with cardiac arrhythmia syndrome. We had a 2 day EKG. Luke's heart is completely normal and he has no arrhythmia (Praise God!).

 

On May 20th, Marty and I took Luke to Mobile to see a genetics doctor. This doctor was amazing. For the first time, we met with a specialist who didn't view Luke's disability as something negative. Most would kind of scratch their head and talk about Luke's "dysmorphic traits". This doctor said that Luke is unique, as are many children with genetic disabilities. He didn't have any answers, and that is completely ok. He recommended that Marty and I have some genetic blood work done to see if the genetic issue runs in the family.

 

So, there is no specific diagnosis. I am thinking that their never will be one. I guess the information we have is ok in order to get Luke on the APD waiting list for services after he is 22. The problem we are faced with is that Luke needs services now. He already receives speech/language therapy, occupational therapy, and physical therapy. One therapy that he desperately needs is ABA therapy. In order for insurance to cover this therapy, Luke needs and autism spectrum disorder diagnosis. This is where I have met resistance. I have a personal relationship with his doctor. This doctor does not want to give this diagnosis. This is sad because Luke cannot receive the therapy he needs as a result of this. So, now I will have to push. I don't want to, but I am Luke's advocate first. I need to do what it takes for him to receive this therapy. God help me.



Pushing for a Diagnosis... Again.

Luke is growing and making developmental leaps! 2014 Pictures so far...

 

Mr. Peadon is one of the best barbers around

 He has a grandchild with a disability and he knows how to work with Luke

 Luke and his Daddy watching the Superbowl at the church

Luke climbs in and out of tub frequently. He enjoys the tub, even when there is no water in it :)

 

Diagnosis- Back to the drawing board

 

It has been at least two years since I last pushed for a diagnosis. It was just a couple weeks ago that I finally felt that I had the emotional strength to push forward. I met with Luke's pediatrician last week to discuss where he is in his development. It felt good to be able to brag on my little man. His doctor decided the first thing that we needed to do is to have some bloodwork done. Apparently there is a new chromosomal genetic test that came out about three years ago that is able to show even minor deletions. Marty took Luke to have his blood drawn last Friday. I am not sure how long it will take to come back.

 

I still feel that pushing for autism to be part of the diagnosis is important. I am quite sure he in on the spectrum somewhere, so an autism spectrum disorder (ASD) diagnosis would be appropriate and would allow us to seek Applied Behavior Analysis (ABA) services for Luke in the future. As far as a possible syndrome, we will see where that leads. Maybe this new genetic study will show something. None-the-less, I am ready for the fight.

 

Props to the Doc

 

(I am purposeful when I do not use name and do not use gender identifying words.)I have known Luke's doctor for quite some time. I have a high level of respect for his doctor. I have watched this doctor's behavior in our community and in the profession. This individual truly understands me and truly understands how heartbreaking my situation can be. As a result of my observations and personal experience with this individual, I totally trust the opinion that this individual shares with me.

 

I don't think this individual realizes how much encouragement I received in our last meeting. 



 



The End of Another Year... Bye Bye 2013!

December Happenings...

 

 

THE STRAW:

Luke learned how to drink from a straw! Yay!

 



The look of concentration and focus...

 

He is also beginning to drink out of regular cups with small regular straws. He is also beginning to try to drink out of a regular cup like a big boy! His teacher (and her staff) worked so hard with him to achieve this. I am so thankful!

 

 

Christmas 2013

 

 

As you can see, Luke was fairly uninterested in Christmas. His siblings did help him become more involved...

 

 

 

Luke's gift... The SnugglePod

 

 

A cocoon shaped swing type chair. It hangs from the ceiling in his room. It is not really a swing, but it rocks back and forth. He loves it!

 

 

2013 in Review

 

 

This year just flew by! So many great things happened. Our family has grown closer and we are continuing to blend. Luke is a great part of our family. He fits in. While his disability causes him to be dependent on his parents, he is able to be flexible and flow with the needs of his older siblings.

 

Luke is walking stronger. He now can hold on to someone's shirt and walk. He pulls up to counters and goes around the kitchen on his two feet while holding onto the counters. He grabs things off of the tables and counters (this is actually a good thing!). He stands at the table and will vocalize while looking at me (or Marty) in order to let us know that he is hungry. He has started vocalizing in ways that sound like he is saying approximations of words. He vocally imitates sounds that Marty makes. He will sometimes try to kiss and hug me. He laughs at some things that are age and gender appropriate (i.e., burps, passing gas aloud, etc.). He has grown taller and gained some weight. He is in kindergarten and seems to be among the higher functioning students in his class. He is drinking from a straw and trying to drink from a regular cup (without a lid). He has stopped trying to climb out of his carseat. He has learned how to push the button to roll the car window down.  He opens up the drawer under the stove to access cookie sheets to bang on the floor. He LOVES music and will move his head to the beat of the music. I am sure there is much more, but I am tired and cannot remember.

 

So, while there are some challenges with Luke, we are all focusing on all the growth he has made this year. He truly is a living testimony to the greatness of God. I cannot wait to see what 2014 brings!!!









Precious

 

Moments of Pure Bliss

 

There are so many worries that try to crowd our minds when it comes to our little guy. Our faith is strong, yet we can't help but wonder what the future holds. Just when we think there is no real hope, moments of pure bliss occur where we feel a dramatic connection with Luke. This picture is a great illustration of what these moments are like. There is joy and laughter. Luke snaps out of his little world and engages the people around him. We live for these times. They are happening more often and that keeps our hope alive.

Is it "Stim-worthy"?

 

After knowing many children with sensory-related disabilities, such as autism spectrum disorders, I came up with the phrase "Stim-worthy". This is an explanation of my choice of words;

 

 According to Wikipedia, "Stimming is a repetitive body movement, such as hand flapping. The term is shorthand for self-stimulation. Repetitive movement, or stereotypy, is often referred to as stimming under the hypothesis that it has a function related to sensory input.

 

In many situations, an item is chosen that provides needed sensory input to an individual with sensory differences. I came up with the phrase, "Stim-worthy" after taking note of which items my son "stims" on. My son licks as a form of self-stimulation. Below are pictures of Luke with items that he finds "Stim-worthy";

 

 

 Luke will climb to great heights in order to gain access to baskets. He studies them and licks them repeatedly.

 Luke's love of the cd player is two fold- He enjoys the vibration of the music when it is playing. He also likes to lick the speakers.

 This is another basket that Luke enjoys. He fell asleep with this one on his head.

 Luke's most favored items are shoes. He will go to great lengths to find shoes to scratch and lick.

 Music is stimulating in itself. Luke will often pick one or two notes to play over and over again.

Luke enjoyed the metal box top he has in his hand. He took it everywhere until he left it on the bus. He then moved on to other "stim-worthy" objects. They are listed below;

 

-light up toys that spin

-toys that produce music

-metal objects

-my curly hair

-solo cups

-paper plates

-cardboard

-plastic bags or crinkly plastic

-mini-crates

-plastic container lids

-CD's and their cases

-computer keyboard

-The Pirate Song by the Backyardigans

-spinning in an office chair

-plastic tires on toys

-sippie cup

 

 

There are many other items that I am sure I am missing. Each child with  sensory-related disabilities has a very specific list of "stim-worthy" items. As a therapist, it is my job to know these items. They provide motivation for behaviors the therapist is wanting to teach.

 

 

So, tell me your opinion-

What do you think of my choice phrase?

Do you understand?

I welcome comments and criticism.