I stopped my world yesterday. It was a simple thing. First, I started my day cooking a meal for my autistic son. Driving it to his apartment to the delight of his feasting eyes on homemade chicken tenders was so worth it. Shortly a new job coach arrived to Luke’s home. We are hoping to increase Luke’s structured employment or volunteer hours in the community. The meeting went well.
My autistic son Luke was discharged recently after a month in a Washington State King County Evaluation and Treatment Center. My understanding is these treatment centers are partially funded by the State of Washington. They do short-stay commitments for clients who present with severe mental illness. Luke has now returned to voluntary placement, although with extreme changes that include living in a hotel!
On 3/1/18, my autistic son Luke was placed in a group home. Luke is 25 years old and needed more support than his parents could sustain. I have shared past posts on my blog about Luke and his life. It is no small feat to navigate the Department of Social Services in matters of mental challenges and neurological disabilities.
(Disclaimer: Original post written 12/2012). When I was growing up, mental illness was shunned. We did not talk about it in my household. The first time I was exposed to the mentally ill was when I visited my two aunts at their job. They were nurses in a mental hospital for chronic patients in Kentucky. As a young girl of 17, I was immediately drawn into the strangeness of this new world. ( Today a person would not be allowed to visit like I was able).
Having an adult son with autism has hard and complicating challenges. My first time hearing Luke’s diagnosis in 1994 made me numb. It did not seem real.
Convinced it’s finished, we find excuses. Lots of them. It is never done. Conflict comes and goes. We can be on a crash course that promises to be the collision of a lifetime. No one said life is fair.
Happy Birthday to the best guy ever. Autism does not define you my son. What I see in you is amazing love that others can not even come close to realizing in their own lives. You have no understanding of lusting for money or materialism. You may live in a world made of your own design, but it is better in many ways to the cruel world the rest of us live in.
I hope and pray for you and want what is always best for you. You have family all over the country and they have missed out on getting to know you. I am grateful to the family you have in your friends.
You are 24 years old. You have a dad and mom who will love you for as long as we are here on earth with you . I know you love God and He will always have you until you meet Him in person .
It’s inevitable . Don’t count yourself out. No one wins in this battle.
She called me and voiced her concern. I said, “what’s the matter?”
“He asked me again how old I am.” Repeat. Rewind. Move forward. It was the advice I gave.
Memory issues are ever present in my own devised, messy life. As a brain tumor survivor, I decided to do life as my will determines it to be. That can be complicated as well as simple. Never boring.
Then there is my autistic son . He has real issues remembering everyday life sequences. I try to make life fun for him. It really helps.
The problem I see with care takers is the isolation brought on by the inability to be out in society as much. My idea is we all need to help each other. Forgiving those that are losing their memory also is probably not what a care provider or family member wants to hear, but it’s the only way one can be.
For example, Caring for my son was days without sleep turning into countless years with sleep deprivation. My son turns 24 next week, 22 years I was the main provider. I had several helpers throughout the years and his dad was awesome, but most weighed heavy on my shoulders.
Routine also needs to be kept constant. I did not realize it until my son was born. I am mostly a spontaneous person and do not care for everything being the same day in and day out. Spontaneity was needed because my RN job caused me to have to document everything very closely by the clock. I sure did not want to do that with my personal life!
Written in memory of those who lost their battle with dementia.
We need to learn to let go. We hold onto things way too long that needs to be released. I decided recently I need to start judging. Yep. You heard right. Judge.
After carefully thinking through this, I am judging it all. How you taste inside me? What drew me to you? Where this will take me? It is true good or bad and now I am OK with judging. Watch out. I may prematurely put you to the test.
Brain injury awareness month was the last thing on my mind ( no pun intended) as I scoped through my home last week looking for an important document. I was getting mad at myself.
Many of my rooms are partially empty. There are a few reasons for this. Without blaming my autistic son too much, I am convinced he has wanted me to redo rooms for quite sometime. ( He breaks things. I guess we all need hobbies. This one is very expensive ).
I have had a brain tumor and some form of TBI ( traumatic brain injury) and like my surroundings well controlled. My inability to find that document drove me crazy. I finally called someone who assisted me! Thank God.
Without boring my readers, I was working through authorizations , etc with my health needs. This alone can drive anyone nuts.
Surgery again tomorrow and another overnight stay is enough to think about, but my mind has trouble staying focused at times. I do not care if I am labeled with a monkey on my back. Maybe the monkey gets the attention for a cause that may be way worse in others than my case.
Greatest Mom Ever (ask my sons)
Kidney Cancer Survivor
Brain Tumor Survivor