Sep 16, 2011 0 Share

After High School

Apple on stack of books in front of blackboard.  "Learn" written on board.

It was during Cody’s senior year that we had to appear in court in order to get legal guardianship of him before he turned 18. Legal guardianship would ensure we could make crucial decisions regarding things like medical, financial and legal matters on his behalf. Even though Cody knows to call 911 in an emergency, panic, fear and distress would most likely override that decision-making ability. Communication issues prevent him from representing himself in a legal matter and also with regard to financial decisions.

After high school we struggled to get him enrolled in a program which could further help him become self-sufficient. But this presented a huge challenge. There are good programs here in the area but because Cody is not at immediate risk of losing his home (and won't be as long as I'm alive) and he is well provided for in the way of food, clothing, transportation and medical care, then he didn't meet the state of Missouri's criteria to be placed in these programs.

However, we were told that Cody could attend the program at one of the adult daycare services in the area. We began checking them and thought we had found one that had a structured program and an appropriate number of support staff. We later found this to be not true. Staff at the program allowed everyone to roam about freely throughout the day. There were no scheduled activities to participate in, only those which were initiated at random. The environment as a whole was loud and chaotic and completly overwhelming to Cody. He began acting out in a violent manner. He hit his head on numerous occasions. He broke a figurine which belonged to the director of the facility. We were told he was involved in an altercation with another program recipient there as well. It became clear to us that enrolling Cody in this program had been a horrible mistake. After only a few weeks, we decided to remove Cody from the daycare center.

But to meet the state’s criteria for other programs, a person had to be at risk in some physical way or have a profound intellectual disability. The irony was that the programs Cody needed were programs in which someone with severe ID could never thrive. It made absolutely no sense! And while my husband and I are able to provide love and all life essential needs, we cannot afford to pay for these programs out of pocket. So Cody remained on the state's waiting list from the time he was 18 until just a couple of months ago, when Missouri increased the availability of Medicaid monies.

Cody is now 25 years old and is beginning to come into his own in terms of interacting in the community. He continues to show growth in academic skills as well, improving in math, spelling, writing, and using appropriate sentence structure. This is the result of appropriate programming. In addition, for 12 hours per week, Cody is taught daily life skills such as housekeeping, cooking simple meals, answering the telephone and appropriate responses to give to a caller who asks for my husband or me, in the event we are not home or not available. Staff members also work on helping Cody know what is and is not an emergency, and the appropriate way to respond. He participates in group activities such as outings to parks, dances and other social functions. Once a week they do community outings that involve him ordering his own meal at a restaurant and paying for it, himself. When the group goes to the store it is his responsibility to shop for items on a list and pay the cashier. I cannot begin to express my gratitude and relief at finally seeing him able to get to learn and do these things. Not only does it bring me much joy, but it is also a monumental burden off my shoulders to see him become more and more self-sufficient every day.