Last month, Devin turned 18! Yes, a milestone but not in the way that most people look at turning 18. In my world, Devin turning 18 makes the reality of his autism even more apparent!
Devin’s 18 is different from that of many
As most young people turn 18, their lives are full of social activities and plans for the future: boyfriends and girlfriends; attending proms; having senior portraits taken; visiting college or post-secondary schools; deciding on a major area of study; sometimes engagements, weddings and starting a family. Primarily, most 18-year-olds are focusing on establishing their independence and entering society as adults.
For Devin, turning 18 means an entirely different type of reality — not only for him, but also for me! It means it is time to face the reality of what his adulthood will look like and planning accordingly.
School until age 21
Every student who is receiving special education services in the United States is required to be evaluated every 3 years to determine whether they still qualify for the services. According to the tests included in this evaluation, in some areas Devin functions the same as a “normal” 4-year-old and in other areas his level is at the age of a “normal” 10-year-old. But in no area does he function as one would anticipate an 18-year-old would.
Because of this, Devin will receive educational services until the age of 21. Although these services will be administered through a regular school, his goals will focus more on developing independent Devinliving skills and skills needed to obtain and hold a job. At the age of 21, he will receive a certicate of completion for his studies.
Six years ago, I had to make the heart-wrenching decision to put Devin in a residential care facility due to safety concerns. When he becomes agitated or upset about things, he has a tendency to become very explosive and aggressive. Many times he does not remember things that he has done during these periods. I had been walking around with bruises, bite marks and scratches for a long time when I finally decided that I needed to something not only to keep myself safe, but also to keep Devin from landing in a juvenile detention facility. When I made the decision, I was convinced that several months to a year of residential treatment would help him learn how to cope instead of exploding — although everyone has tried very hard to make that a reality, it is not going to happen.
I have had to come to terms with the fact that my son needs more supervision and structure than what could be provided in a regular home setting. He needs one-on-one attention most of the time to keep himself safe from his impulsive actions and to keep others safe as well. He will need this type of environment for the rest of his life!
An example of the need for constant supervision occurred just a couple of weeks ago. Devin told one of the staff members at the home he lives in that he wanted a cup of tea. He filled a tea kettle with water and put it on the stove and turned the burner on. After a few minutes, he told the staff member that was supervising him that he should probably check to see how hot the water was. As the staff member started to ask Devin how he was going to do that, Devin promptly leaned over and touched the end of his nose to the hot tea kettle — faster than anyone could stop him! But if he had not been supervised, I cannot imagine what could have possibly happened!
Devin’s residential care facility is located 3 hours away from where I live — living in the rural Midwest, there are not a lot of options for a juvenile who requires this type of care. We have been fortunate that over the past 6 years I have been able to visit at least once a month and most of the time twice a month, so we have been able to maintain the bond that we have. And we have been very fortunate to have a very good rapport with the staff there, who are so good about sending me photos of him accomplishing goals or making something creative!
Because of Devin’s inability to care for himself and make sound decisions, the other big reality is that I have to apply to the courts to be named Devin’s guardian. Yes, I am legally his mother but once he reaches the age of 18 he is legally considered to be an adult and could leave the residential facility without anyone’s consent. By establishing guardianship, I will still be able to advocate for him as well as make important decisions regarding his care and safety.
When I started the process of establishing guardianship, it did not seem like such a big deal because I knew that it needed to be done. However, as the 18th birthday approached, my conversations with Devin have made me realize that although he might function like a younger child, his mind knows what turning 18 normally means. On a recent visit, one of the staff members and myself found ourselves trying to defend the fact that I would not let him start smoking. His argument was “once I turn 18, I should be able to do whatever I want to”. Yes, in a perfect world he would have a valid point — but autism has robbed him of that independence!
When Devin joined our family at the age of 4, we had high hopes of providing him with a stable home that would enable him to have a “normal” and productive life. Little did we know the reality of what turning 18 would mean for Devin. But at the same time, I often wonder about a couple of other things. 1) Would his life be different if he had received the interventions and therapies for the autism at an earlier age? and 2) Because of us bringing him to our family, is his life and reality better than it otherwise might have been?
I will never know the answers to those questions — and I probably do not want to know either! Instead, I will focus on the fact that I have a son who loves me unconditionally and who has a wonderful artistic talent that I have never had! In fact, the photos on this page are actual creations of Devin or photos of some of his accomplishments as a teenager! He may not have grown into the adult son that I once envisioned, but he is my son and I am so grateful that I have had him in my life to make me appreciate things that other people tend to take for granted!
I would love to hear from others who have had children with autism transition into adulthood and what feelings you have had as this has happened! Please feel free to leave your experience or comments on this post in the space below.