Set Adrift

I have spoken with two Moms in ten days who are truly and completely at a loss as to what to do with their daughters. Both these Moms have multiple children and have a great deal of experience raising children with significant disabilities. They know the ‘systems’ that are in place to supposedly help their troubled children. They both have a wide support base in place, and they know where to go to find answers – most of the time. Yet both these Moms are now facing what I consider to be the singular most difficult decision in their lives – whether or not to ‘give up’ on their child with significant disabilities.

I’ve been where both these Moms currently are. I was forced to make a decision that most probably will have life-long effects on my daughter, myself, and my other children. Some of those effects may be positive and undoubtedly some will be negative. Yet, I was forced into my decision exactly the same way the two Moms are being forced into theirs – at the hands of people who should be helping to find more palatable options.

I adopted my daughter, Jessica, when she was nine years old. She had languished in the foster care system and had been physically, sexually, and emotionally abused along the way. Her way of coping with that abuse was to refuse to let herself trust or love anyone – ever. Once she joined my family, a family where love flourishes, she didn’t know how to live her life. On the surface, it appeared as if her struggles could finally be over, but deep down, she could never accept that. She had spent too many years accepting struggle as the only way of life. Her decisions then, and which continue now, were to reject our family before she believed we would reject her. Therapy, which would seem to be a logical step in helping Jessica learn that not all people in the world were like her foster families, was unsuccessful because of her moderate mental retardation. Traditional talk therapy won’t work when the ‘talkee’ doesn’t comprehend the ‘talker’. So Jessica’s options narrowed down to behavior modification (another technique that is made more difficult with mental retardation) or chemical control (medication). And like the Moms I mentioned above, I tried and tried to find the help that Jessica would need to believe that I loved her and wanted her to be happy. Unfortunately, I couldn’t.

Jessica had learned to protect herself, both physically and emotionally, in those early years, by becoming physically aggressive. She would make sure that no one ever tried to love her and leave her by making life so dangerous that the safety of everyone around her was compromised. After Jessica had been with me for four years, and after she had broken or destroyed most everything in her surroundings including two of my ribs, I had to make the most difficult decision of my life – I had to remove her from my home. Once again, Jessica had proven herself right – yet another family had rejected her. I was, however, fortunate, to find a solution that while not perfect was indeed better than some families can find.

Four years after becoming my daughter, Jessica moved to a group home for children with significant behavior issues. The fortunate part of all this is that the group home is only three miles from our family home. That means we can still play a very active role in Jessica’s life, but she doesn’t have to endure the closeness and intimacy that comes from living day to day with a family. She has adjusted quite well to the group home in part because there is a lot of coming and going of other residents and staff. She is not required to form strong bonds of attachments. She knows up front that all relationships are temporary, and unfortunately this fact is okay with Jessica. She has flourished in this group home. She is doing well in school and is well-liked by everyone whose path she crosses. She is allowed to be exactly what she is comfortable being – an island unto herself but an island with frequent ferry service to and from her family. I would like to think that one day she will finally accept our love and want to come home to us, but with each passing year the chances of that happening become fewer. But, she is safe and happy and the rest of the family is no longer being physically attacked. She is, in many ways, closer to us now than she has ever been. But, as I said earlier, we are very fortunate. Most families are not as lucky, especially the two Moms.

Mom1 has an adopted child very similar to Jessica, but this child’s aggressive behavior never ceases – no matter what environment she is in. She has been moved from school to school, inpatient treatment center to outpatient treatment center, residential treatment to therapeutic center – but the aggressive behaviors only escalate. Mom1 is no longer able to even have her daughter visit the family for fear of major injury to the rest of the family. And now, Mom1’s options appear to have run out. No more facilities seem to exist. Support organizations are scratching their heads and coming up with no more options. Mom1 is having to seriously consider relinquishing her daughter back into the foster care system. Her daughter is currently in limbo and will soon be ‘lost’ – the cycle of abandonment will go on. Mom1 knows this but seems to have no other options.

Mom2’s daughter is her birth daughter. This daughter was born severely disabled, including deafblindness. As I have talked about before in this blog, deafblindness is a very low-incidence disability. That means most people don’t understand or even know what types of supports to offer such a person. Unfortunately, most support organizations take, what is in my opinion, the easy way out. They try what they know works for people with other disabilities, and if that doesn’t work, they give up. The ‘system’ has given up on Mom2’s daughter. After moving her from school to school, residential ‘school’ to psychiatric ward, the ‘system’ has declared her a total loss. Rather than take any blame for not having educated this child for the past 15 years, they put the blame on the child and say there is no hope. The child is so frustrated at living in a dark, soundless world and not having anyone help show her a way out that she is hurting herself over and over, worse and worse. Her most recent facility has said they will no longer serve her as of June 14th, and that she will have to come home – home to a single mother raising other children in her family – home to continue to hurt herself to the point of needing emergency treatment. And no one, no organization is working to find a solution to this.

All three daughters were given up on by a system of so-called support. Three families are hurting and grieving because creativity has lost out to bureaucracy. Marriages end and people, including other children, are injured and money is given as one of the excuses. I’ve been hearing for years about the Lost Boys of the Sudan. The Lost Boys of Sudan, were a group of young orphaned refugees forced from their villages by war to trek hundreds of miles through African wilderness. Thousands died along the way — they drowned, were eaten by wild animals, shot by military forces or overcome by hunger, dehydration or fatigue. Thousands of others survived to tell the story. It is a story about the courage of these young refugees and the kindness of those who have helped them.

What about the lost children of America – the children we sacrifice because we can’t take the time to figure out how to help? America did not give up on the Lost Boys, and I find it appalling that this country is giving up on its own lost children.