Category Archives: Neurological diseases

A Head’s Up

The irony of my title is fascinating on several levels. It reminds me perhaps most of having a sense of control.  With a head’s up on a situation that needs a thoughtful answer,  I can usually work on a responsible solution. When my autistic son Luke was hospitalized , I was out-of-state and felt out of control of the circumstances.   Fortunately I do not have a learned helplessness mentality.  My fighting spirit keeps me positive  and the idea of developing a problem-solving strategy to deal with life’s difficulties is no stranger to me.

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Autistic Son Discharged From Hospital

FullSizeRenderOn 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.

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Autism And Its Challenges

luke at ATPLuke’s autism is a story I have chronicled so you could see the challenges we face. This disorder comes with a big price and it takes much determination to succeed. Along with Luke’s disability, he has significant cognitive delay. His mental age in my opinion (his mom) is about four years old. The question by some may be, “How does one live like this?” The answer is, “It depends.” For example, many people have their own commentary of quality of life. We all have “our truths” about that subject. So do we impose our idea of quality of life on the one that is actually suffering, yet he does not even know it? My perspective is pretty simple. Life matters. No matter at what stage or age you are in. Life matters. Why are others quick to pull away from their responsibilities? See what you think of my example below as I describe a week in the life of a mom and her son trying to find medical help. Sorry medical professionals–you seem to get picked on by me a lot.
We have had quite a week dealing with Luke’s need for dental surgery. I spent undo precious time trying to find a doctor willing to do the surgery for Luke without giving him General Anesthesia. Finally I found an oral surgeon willing to take the chance to do the procedure in his surgical suite under IV sedation. I am very grateful that Luke was taken care of there and the surgery was a success ( no general needed!).
The post op journey has not been easy though, but I believe we may have made it through the worst of it. We make a third trip to the dental surgeon this week, and I hope that will be it except for routine cleanings! I think Luke would agree. I wonder how many people could go through the agony of hearing from one doctor’s office after another not willing to care for Luke.
I say Luke will endure and maybe Mom will too! I am glad sometimes he does not understand the discrimination he gets. So many are still ignorant that Luke is human and made physically just like them. Anyway, this is just one example of how autism impacts families and brings undo burdens that should not be there.
There are dentists who actually say: ” I don’t take care of that kind of medical issue (even though they do) because there are “others” who will. I wonder which dentists are the “others?” For now our other was Dr. Sorenson. He was great as well as his competent staff and front office. In the photo –you will see Luke is still smiling!!! He always will.

Adult Transition Programs

I spent this afternoon visiting my autistic son’s adult transition program. Any parent with a special needs student know the enormous assistance the school district does to assist families in the special needs arena. Some of us may be more fortunate than others to have a program that goes the extra mile to assist our special kids. I believe our district is one of those here in the greater Seattle area. Thank you North shore School District~! It is with fondness, I share with you the end of an era for Luke. One more month and Luke graduates from this school.
Today I brought cupcakes and ice cream for everyone to enjoy Luke’s extended birthday celebrations~! He wanted to have several birthday parties for his 21st! Luke loves to PARTY!!!

Risking It All For Our Children

Luke is a handsome young man looking to find a job. Luke is severely disabled with Autism.

Luke is a handsome young man looking to find a job. Luke is severely disabled with Autism.

BASIC FACT: According to the UN, only 2% of
individuals with disabilities are able to
access basic services in their communities,
including education, work, healthcare, and
basic necessities.
Now let me introduce you to my son:
Luke has Autism. He is 20 years old and has only 9 months left in the public school system. Luke is a very loving young man who needs ongoing assistance to function in the world and to communicate. This year the school is attempting to place Luke in a job. Job internship placements are extremely difficult and in some cases lacking. Participation in job exploration in Luke’s past have included working in the library, gardening, recycling, and cleaning tasks. These specially designed activities for Luke are successful only with strong support including a job coach.

Luke has Autism. He is the most precious young man a mother could ask for and yes he needs special help everyday and will need it for the rest of his life. Today I hosted a meeting with a group of individuals all working as a team to assist in Luke transitioning from the school world to the real world. What does a meeting like this look like? As the host, my part is to make sure everyone is on board planning for Luke’s future. Perhaps this may mean developing a personalized work training plan. It also means teaching Luke acceptable worker traits.

Luke's Team of Experts include his teacher, a vocational expert, a job coach, and a visionary who wants to chart out a plan for Luke for all of us to follow.

Luke’s Team of Experts include his teacher, a vocational expert, a job coach, and a visionary who wants to chart out a plan for Luke for all of us to follow.

Luke has Autism. He will always need 24 hours supervision as Luke can be violent and unpredictable at times. Yet, he is the most precious young man and son a mother could ever ask for and he is worth risking it all for to see him be successful. As his mother, it is important to build relationships with Adult Service Partners as I did today hosting a meeting to facilitate Luke’s adventure into the real world. It is my hope the school will work hard to show Luke a visual representation of work experiences. This means a parent must be a strong advocate.
Luke relaxing between jobs at home which include emptying the dishwasher!

Luke relaxing between jobs at home which include emptying the dishwasher!

Luke has Autism. What does success look like for Luke you might ask? First of all it means working with many agencies and coordinating meetings to ensure Luke has success in his future. Today was a day for doing just that. I had folks from Luke’s team meet at my house to discuss possible employment opportunities for Luke. Some of the jobs we brainstormed about included working in a warehouse, or possibly working to clean at a winery. I loved the idea of Luke working in a winery!

Luke has Autism. Who hires someone like Luke? This is a good question. There are not many employers who do. Finding accepting and workable business owners who are willing to go the extra mile to hire someone like my son can be a challenge. For you see Luke can probably only work one hour maybe twice a week. The good news is that Luke wants to work. He talks about it and is excited about it, but he is also nervous and stressed about it in his own way. He realizes his school days are coming to a close rapidly.

Luke has Autism. Luke is worth risking it all for and being there to see him succeed no matter what that success looks like. For now Luke is cleaning school buses, packing lunches, and recycling and carrying out the trash for the school district. It is our hope these jobs at school will translate to gainful employment by the end of the year.

Luke --my goofy son.  He is looking for a job.  Are you hiring?

Luke –my goofy son. He is looking for a job. Are you hiring?

Luke has Autism. He will be the best employee you can ever imagine. It is my hope his future boss will have a great imagination and see what I see. I see success for Luke. This vision is what I hope Luke’s future boss will see and that they see Luke as a great investment. Wouldn’t it be great if all folks with disabilities would be given more opportunities to step into the workforce. This mother knows her son will be a great employee. Why not? He has been an awesome son for 20 years.

Central Pain Syndrome

This photo was taken not long after my first brain tumor surgery.

This photo was taken not long after my first brain tumor surgery.

Having a brain tumor was the last thing on my mind (no pun intended) as I dealt with many symptoms leading up to that diagnosis. Apparently it was for the doctors too as they never entertained the thought even after carefully describing my symptoms 3 years earlier than my diagnosis. At least the initial doctor confessed he had “missed” it. I hold no animosity as a doctor that can be apologetic is better than the one who is an ass hole. You all know the type if you have had much medical treatment.
Over two years have gone by since my brain tumor was removed. In fact it is time for my annual MRI soon. I will keep you posted on the results. One of my most lasting and chronic problems I seem to present with these days is called central pain syndrome. It is one of several issues I have going on, but this one is tricky. Treatment for this is difficult. In fact the treatment can be worse than the pain. There is no cure. I hope to share more with you all as I can. I have some tough days and my focus is limited when I do not feel good. I take each moment and am thankful when I am not hurting.
I wanted to share with my readers a very important thing about the brain. Our brain is a vascular organ. If you can imagine your brain as a river with many creeks running through with purposeful directions than you have an idea how important all the blood vessels are in our head. No one knows for sure the cause and effect of certain disease processes that coexist and what may have to happen first for another disorder to occur. Much of medicine is a discovery just waiting to happen. When I had my brain tumor removed, I had a procedure called an embolectomy first than my crainiotomy the next day. It was soon after the embolectomy and being sent to the ICU that I had symptoms like a stroke patient. All the doctors like to deny that the cause of the stroke may have happened on their dime. No one knows for sure, but being a relatively young person ( ok I was in my 40’s when this happened) the most common cause of strokes is disease of the arteries in the brain. We all have heard of problems too that all of us can try to tame. One last thing readers, please work hard on those things you can change with a good doctor helping you: high blood pressure, high cholesterol, and physical inactivity.