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
If you read this, it will change your life…
Luke has a rather severe case of autism. It is coupled with Bipolar. He can rage at a moments notice. If you are in his way, the chances of you getting physically hurt are high.
I had just returned home from a trip to Hawaii ( yes I have a life) when I had my son over for a few nights. While finishing supper with Luke, he was his usual hyper self. What happened next was 5 hours of pure nightmare.
Luke ran upstairs to his room and began hitting the back of his head into the wall. He has made several holes in the drywall, but it had been 5 years. I caught only one bang of his head visually by the time I got to him.
While physically injuring himself, Luke was crying loudly and a hematoma was developing on his cranium. I was able to ice his head, give him meds, and get him in a bath tub to calm down. The pills kicked in, but the crying and other bad behaviors were persistent. Five hours later he was asleep from pure exhaustion. I did not sleep at all that night.
You may wonder why I did not call 911. I want to tell you why. Here is what conversations took place from this incident. It was almost exact to what I had heard a few years ago when I reached out for help. One day I fear I will be unconscious and can not even make these calls. Luke did make me bleed. I am fine though:
1. I called the crisis hotline and left a message. That’s right I got a voicemail.
2. I received a call in 30 minutes from a man who called himself a social worker who triaged the hotline. He said my son would be restrained if anyone came to my home. He put a referral in for me, although I said my son doesn’t need restraining.
3. The referral call came an hour later and she was a social worker too. She stated to me almost verbatim what the first man said. She added one bit of information by saying we have nothing good for adults with autism and our community is 20 years behind .
4. I talked with Luke’s medicine management provider. He stated Luke was more than he could handle and refused to see him in his office the next day if he was aggressive. He said call 911. I believe this is a cop out by providers and lame. I think providers need to see the patients how they can be and not all calm. I worked for 30 years as a nurse. I understand the hazards.
5. I spoke with a RN friend who works as a mental health nurse on the largest psych unit in Seattle . She knows Luke personally and said again to me: “Luke would be restrained. Please try not to bring him or call 911.” She knew my pain and our predicament.
6. I called Luke’s case manager and met with him. Luke is being placed back on a list for a special home. Will there ever be one found ? We have been down this road before and three homes refused to take him.
Rewind : Will society ever do what’s right for folks as Luke?
Luke is better right now, but I wanted all my readers to know we have a crisis in mental health. Again, will we ever get this right? I will not call 911 for my son to be handcuffed.