There can not be enough said about getting support when raising children with disabilities. Everyone in the family needs it: the child with the disability, the parents, the siblings, the caregivers, everyone.
The obstacle with EB is that most people have never heard of it and have no idea what it is like to live with it. For children with a psychiatric disorder, many may have heard of the diagnosis but unless you have personally lived with someone that suffers from it, few really understand what it is like parent a child with the disorder.
Having moved to a huge medical community in the last year, we immediately benefited from the good medical care available. Developing a local support system that understands the demands placed upon us is taking more time. I've found that most people are supportive when they recognize we are caring for a child with a physical disorder. They may think we are a bit crazy to have voluntarily decided to do it (adoption) but none the less they view it as an Ok thing.
On the opposite end of the spectrum is the response to caring for children with psychiatric disorders. We have found this to be a very different experience. It is often the family that is blamed for many of the children's behaviors that are (in reality) a direct symptom of their medical condition. I can go from one department in a major medical clinic where I am seen as a gifted saint for caring for a child with EB, to another department that questions every parenting skill that I have. The huge swing in treatment can be very frustrating.
I understand that treating a child with a physical disease such as EB means finding a medical procedure that will alleviate the pain and suffering. Many of the interventions may not work but there are interventions to try and the medical community derives a sense of "treatment" because they are actively doing something. In dealing with a mental health disorder, medication will play a part but behavioral interventions become the primary key. This brings into play a whole host of ideas and every practitioner has their own set. To further complicate this, outcomes are very difficult to measure as there are few clear physical indicators. If clear progress is not seen, it is far too easy for the medical provider to find fault with the family.
I spoke with a friend this past week that is working really hard to parent her mentally challenged child without focusing all her time defending her parenting. The practitioners that work with her child are quick to find fault with the parent because the practitioner's interventions were not successful. How confusing from the way we treat a patient that is suffering from pain (such as in EB). In treating pain, if the medication does not alleviate the suffering, we look to another medication or another form of treatment to bring relief. How can it be that in treating a child with a mental health disability, when the first line of treatment does not bring quick results, the family is questioned to be at fault? How does that help treat the child's disorder and how does that support the family?
I find myself advocating for those families that suffer in silence due to their adverse treatment resulting from caring for children with psychotic disorders. Some of those families will simply quit treatment until a medical emergency pushes them back into the system again. This is so frustrating and painful to watch. These families need our support. They need someone to "hear" what they are saying. They need to be treated with respect.
If you know someone today that is caring for a child with a disability; tell them that you will pray for them and then follow through and pray. Listen to their story even if you can't relate. Ask them if there is anything that you can do to help lighten their load or surprise them by doing something special for them. Realize that the need may not be time away from their child but rather encouragement and support so that they can joyfully continue their care giving.
We have had a great Christmas with extra family here. It's a treat to have our older children around. Here are some of my favorite photos:
Enjoy the last of 2010 as we anticipate a blessed 2011.