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.



Musings, Frustrations, and Joys...

Luke standing at the kitchen counter wondering where in the world his dinner is...

 

Musings-

I sometimes find my life to be a series of comical events that run together into random stories of adulthood. I have had years that I have titled, "The year of unfortunate events" or "The year of growth". Last year was a year of many unfortunate events that led into this amazing time of encouragement, growth, and peace. Professionally, I am now in a place where I feel like I am a perfect fit. I feel like I am finally in an environment where who I am is a perfect fit. I plan to grow where I have been planted. I give God the credit for this one, definitely. I come in contact with individuals who help me see that I am intelligent. It sounds weird, I know, but I have questioned my own intelligence, at times.

 

My marriage has grown and changed. Instead of two selfish people trying to do things on our own, we are allowing God to take control and letting go of our selfishness. We are falling in love again. As a result, we are becoming the parents God has called us to be. Our children are being blessed by what God is doing in our lives.

 

I have been concentrating on these great blessings. I choose to look at all the positives. What a great time in life!!! One thing that I have been avoiding is that issue of a diagnosis for Luke. I am loving all the positives that are happening and I am stupidly ignoring the elephant in the room.

 

Frustrations-

In the back of my mind, the diagnosis issue has been looming like a dark cloud. See, he has to have a diagnosis in order to get on the waiting list for APD (Association of persons with disabilities). The waiting list in years long. APD offers specific services to individuals who have aged out of school system benefits at age 22. Luke will need these services.

 

I am just desperately avoiding the fight. No one seems comfortable giving Luke a clear diagnosis because no one really knows what is going on with him. There are no clear answers. He does not fit the common mold. This uphill battle requires emotional and mental energy that I am just not sure that I have.

 

Sometimes I just want to scream! I know I am not alone in my fight, but I definitely feel alienated by my situation.

 

Joys-

I want to go back to thinking about the joy in my life. My husband and I are in love with each other. We have joined forces for the benefit of our children. We work as a team now. My children are involved in many great extracurricular activities; dance, golf, chorus, youth, etc. Luke has a great teacher and she is really helping him grow. Our little family has turned into a force of sorts. We are becoming fiercely loyal to each other.

 

So, I guess I am rambling. There is no real point. I just feel the need to get it all out. I am basically preparing myself for the next step. It is time to push for a diagnosis so that Luke can get the services he needs and deserves to have. It is time to push until there is a solution.

 

For now, I am going to get my little guy to bed. He is in my bed laughing and stimming himself silly. I also plan to write another blog on the subject of all items found to be "Stim Worthy".