Stitched Together

These days, our time is more focused on E than on T, who, at 21, is living on his own and working full-time, not always doing what we wish he were doing, but doing it his way nonetheless. E, as I've described before, is very different than T and has never lived with us full time. In fact, he's lived in institutional settings for as long as we've known him, ranging from psychiatric group homes to juvenile detention facilities. In our early years with T, it was hard to get to know E; the boys had been separated by the foster care system many years before, and E moved so frequently and was so often in crisis, it was hard to even get permission to see him.

Eventually, he settled in a highly structured residential facility near our home. T no longer required daily parenting by this time, and we were able to work with the facility to establish a relationship. We started visiting E there every weekend, which led to eventually having him with us every weekend at our house.

E has suffered unimaginable trauma, abuse and neglect for his entire life. As a teenager, he's had many bouts of suicidal behavior, and it's not hard to imagine the desperation and rage he must feel and why. But he also has a rich, deep personality, a fantastic sense of humor, a real gift for music, and a lovely capacity for spontaneous affection. He and his brother couldn't be more different in nearly every aspect of their personalities and points of view. Very little that I learned in parenting T applied at all with E. I had long been intimidated by E's needs, and yet, when he started spending every weekend with us, we fell in love. He and Tim have a magical connection. They write music together, sing, laugh and even take little trips. Weekends with him came to feel like a totally normal part of our life, and the part we looked forward to the most.

And yet, however you want to describe it, E has formidable special needs. He is developmentally disabled, having suffered significant effects of prenatal drug and alcohol exposure, and he has had symptoms of mental illness throughout his adolescence. Since the age of 5, when he was removed from a relative's home, he has almost never lived or even spent much time in a regular home. In many ways, the environment of a regular family home, with its casual intimacy, lack of structure, and relative chaos is disorienting for him. I think being with us on the weekends and returning to his group home during the week was a good solution for him during this time. He could dip a toe in the water without having to fully rearrange how he is accustomed to navigating the world.

That sounds convincing, I'm sure, but I've had to work hard to convince myself to accept what feels like a partial commitment to him. Emotionally, I want him with us. His life often seems difficult and lonely. I struggle to trust the various professionals who help care for him, and often believe that Tim and I (and to some extent, his brother) know better. And recently, those feelings of mistrust intensified dramatically.

Over the summer, E turned 18. He elected to remain under extended foster care available until the age of 21, because he knew he still needed a lot of support. But the department of child and family services struggled to find appropriate services for him. His social worker was overworked and didn't know him well. The group homes that were appropriate to his needs only housed kids 18 and under. The  transition-aged-youth programs are all full, and transitional housing available to only 4% of the transition-aged-youth who need it in our county.

One day, during an outburst, E kicked a worker at his group home and they called the police and he spent a weekend in jail before pleading to a misdemeanor. We were all shocked at this turn of events, and realized that the world for a mentally ill young adult over the age of 18 is a place none of us were ready for. When he was released, he was forced to leave the group home, and his social worker moved him through two totally unsuitable environments, where he destabilized terribly. We spent part of every week managing various crises, including having him hospitalized on an involuntary psychiatric hold on one occasion. During this time his social worker never returned our calls.

Then, two months ago, the worst happened: he got in a fight in a group home, broke a window, threatened someone, and was charged with a felony. He was put in county jail in the ward for the mentally ill. It was awful. We visited him every weekend, and longed to "fix it", but bailing him out would extend the resolution of the charges against him, during which time he would be vulnerable to extra legal consequences should he be picked up again. It's a scenario that I've learned is all too familiar to many parents and families of mentally ill young adults.

Finally this week, it seemed we had reached an agreement with DCFS that he could live with us full time. We sent what we thought was a reasonable list of services we would require to meet his needs in our home: wrap-around services, independent living classes for him, help getting him medical and psychiatric care. We were shocked when we were told hat he would have to emancipate from foster care in order to live with us, and that would effectively cut him off from various social services that are vital to his well being, including independent living programs, job training programs, access to psychiatric care, and more. Then the criminal court revealed that because of his mental health status, they would only release him if, as a term of his deal, he went into some kind of mental health care facility, rendering our whole fight with DCFS a moot point.

In the end, the court transferred his case from DCFS to the department of mental health. If I look at the situation objectively, I'm hopeful. DMH workers have an average of seven simultaneous cases, we're told, whereas DCFS workers in our county can have as many as 50. DMH and their programs serve adults, so he will no longer be subject to the chaos of being a legal adult in a world organized around the custody of children.

And yet on a personal, emotional level, I'm sad. I'm sad that in his case love is not enough. I'm sad that our home, where, everyone admits, he is happiest and most stable, is nevertheless not structured or safe enough to protect him. I'm sad that Tim and I have to work during the day and can't attend to his needs. I'm scared that he'll be misunderstood and treated badly again by the people charged with helping him. I know that in order to have the greatest chance to survive and thrive, he needs more support that we can give him without the involvement of social services. Not even all the money in the world would change that - in my limited experience, the kind of support he needs isn't even available at a price. You have to jump into the cumbersome social services bureaucracy and just piece it together bit by bit and the process is sometimes rough and humiliating, no only for the recipient of the services, but also for the people who love him.

I wish I could get all of them to see the person we see in E: the funny, easy-going, double-jointed, artistic, warm-hearted, playful person he is. He stole my heart when I was, frankly, reluctant to give it because I was intimidated by his needs. If we could carry him with us and keep him safe, we gladly would. I hope that as he tries to find solace and safety with the cobbled-together network we've tried to help assemble for him, he carries with him the knowledge that we love him deeply and that he is much, much more than the sum of his circumstances to us.