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.