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.
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.
The church we attended at the time was meeting in an old building. My husband got Luke from Sunday School and I went to get our baby.
At some point, Luke wandered off and we went on a wild goose chase looking for him. I was panicked to say the least.
Everyone was leaving the church , except for a few concerned parishioners. It was the craziest feeling not knowing where our son disappeared to.
The church had an old attic that was used for sound checks. It was accessed by a pull out ladder. At some point it was shut, but we kept running around yelling, “Luke! Where are you?”It just did not make sense.
All of a sudden, I could hear a distant whimper. To say the least a mother knows her child’s sounds. I scurried to have someone open the drop down ladder and low and behold there was our sweet Luke sitting in the dark.
I had not thought of this event for quite some time until I was told recently of the little autistic boy who lost his life after wandering off from his family in PA. These stories are hard to fathom, and even more to swallow. Yet, we have to. We have to remember how vulnerable our cognitively challenged society can be especially our children. Searching for someone missing is a feeling I would not wish on anyone. Anytime a person vanishes-tragedy can be right around the corner.
I hope this story shows how easy life can change in a heartbeat. In this case, it was a quiet sound of a whimper from my precious son. It was just enough to help this mom find her beautiful little boy stuck in a dark, damp attic. My heart still pounds pondering this event.
Luke was held by me for many years until he learned to walk.
Sitting down next to my son, I gathered the rocks he was moving from one pile to another. Luke has always loved putting things in order. If it was not the rocks in one place all together, he was busily in the home putting all the chairs around the dining room table in perfect order. Pushing as hard as he could at times, he was bound and determined those chairs had to be just right.
“Luke, are you there?”
Moving to the computer room, Luke noticed the closet doors were not shut completely. From the corner of my eye, I watched Luke push the door shut until it was closed to his satisfaction. He pushed his body on the door and felt it to make sure it was exactly how his mind thought it needed to be. He was happy then.
“Luke, are you there?”
Luke looked up this time and he started coming rather rapidly toward my direction. He pressed his face and especially his nose into my hair. He took a deep sniff and inhales my aromas. These sniffs were not one or two times, but rather several until I said, “Luke, I know you are there and you can stop smelling my hair now.” He did.
“Thank you Luke.”
Luke does not seem to remember, but I remind him every time when he pushes too hard on my face or head that he is hurting mama. It takes a lot of reminders. I mean A LOT!!
In bringing these examples of some of Luke’s unusual autistic behaviors, I fail to describe too much of the damage that some of these strange motor movements can do to inanimate objects until he starting hurting me. It is because I want to make it clear that I want to see Luke showing me something HE CAN DO. It may not look pretty. In fact, a chair or table may get scratched up, and a closet door may get broken over and over as Luke believes he can fix it. That does not matter to me. As his mom, I am interested in seeing Luke just do. It is not being afraid to let go and bring a CAN DO spirit in my son. Autism does a lot to our children afflicted with this devastating neurological calamity, but we CAN DO a lot to show how proud we are of them even in the midst of quite possibly not understanding for ourselves what the behavior really means for the autistic mind.
“Thank you Luke for fixing my door and putting the chairs so nicely under the table. Mama is so proud of you. I love what you can do Luke. You are my best guy ever! You gorgeous boy.”
“Mama, Luke is your best guy ever and gorgeous.”
individuals with disabilities are able to
access basic services in their communities,
including education, work, healthcare, and
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 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 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 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.
After a few minutes I found who I was looking for and took the pictures I needed to take. After I was done, I began to talk with this woman. I realized a sadness in her face as I asked her if she was there visiting with someone. She said, “Yes, my husband. He committed suicide.” I said, “I am so sorry to hear this. When did he do that?” She replied, “In 2010.” It was at this point we began sharing back and forward about life and death situations. It was as if she was saying death was the best choice he saw for himself.
It was interesting having this chance meeting with her. I do not even know her name, but she did take me to her husband’s burial site. I paid my respects with her. This nicely dressed lady was from Korea and shared with me that he was depressed before he killed himself and had lost much of his business. He was a highly respected businessman and it sounded from her he had lost everything. She had begun to go to work at a department store to bring in some money.
As I took my time with her, we spoke of Korean traditions and how the husband’s role is so important in that culture. She spoke of going to work and what this might have felt like for her husband. You could see the sadness in her eyes as she discussed this with me and the clash of current culture with the culture and traditions of her home country. She shared that her home may be lost soon to foreclosure and she wondered about moving back to Korea. She now has grandchildren here that make her so happy. I offered her the only advice I knew when she told me she is now an American citizen, “Stay in America and be with your grandchildren no matter if you lose your house. They sound so lovely for you.” We smiled and said our goodbyes. I offered to take a photo of her husband’s grave site and email it to her. She was so happy for me to do that. I hope in some way it helps her.