Darla Stewart
I have lived in the same town for all but 10 years of my life. It is a small, rural community that during the ten years away changed a great deal. Some not for the better. During the 10 years away, I was in the Army, met & married my sons' father, had the two boys, and was divorced. Parent & Legal Guardian of two sons diagnosed with MPS VI. There are disabilities stemming from this diagnosis effecting all parts of the body. But not their loving, caring for others, compassion, humor, and faith except that they have nurtured and strengthened those areas.
I am also a Certified Lay Speaker in the LaMoine River District of the Illinois Great Rivers Conference of the United Methodist Church. I serve on the conference Committee on Disability Concerns. I am the "adopted mom" of 14 individuals (5 older then I am) with disabilities living in a group home. Two have attended church with my sons and I; and another regularly talks about his church-going with me when I visit. He was so excited the summer before last when he was baptized. His first words are regularly, "Jesus Loves Me".
I believe God is calling me to ordination and a missional church that is inclusive with those who have disabilities and to break the barriers of "normality" mindsets. Teaching Jesus's lessons with love, compassion, and not judgment because we are not perfect but are working toward it.
Posted in: A Virtual Misfits Club for Parents of Children with Disabilities?
I am a parent of two sons with disabilities from a VERY rare genetic syndrome MPSVI (Maroteaux-Lamy). We were in the "misfit" group without a diagnosis from 1983 when my oldest son was born to 2000 when the current geneticist did some world-wide research and entered us in a blind study in Australia. Both boys have similar and different disabilities associated with the syndrome. After the diagnosis, I was very lucky to find our MPS forum. This forum was started by a family whose child had another syndrome in the MPS family group (MPS diagnosis of 1 to 7 make up the group). We have separate discussion items within the forum ranging from "Day to Day"; "New Research"; Medical Treatments"; Education; Siblings-for the younger members of the families to talk to each other without the adults crashing; and a section that is only open to the families whose children have become angels. It is a great place for support, ideas, things that have worked, and those that the children have had problems with. We also have a group on facebook.
In terms of education, we also help the parents to advocate for their children's needs and rights in the schools IEP sessions and holding the schools accountable for following the IEPs.
When you are given a diagnosis that you have never heard of or experience a trauma that causes a disability you must do your own research because the "experts" will tell you the most common, the "textbook", and the most financially feasible for them-not neceesarily for the betterment of the situation for the individual. Our geneticist made a statement about our MPS diagnosis (and that is why he is still seen by us instead of being switched like three of the boys' cardiologists): MPS did not read the textbook. That is why the boys fit most of the textbook criteria but not all.
Forums can be a great source of support and information but they must be monitored as our family forum is. There are some cruel bullies out there that like to fake having a disability so that they can comment about individuals with disabilities in an emotional and mentally abusive way. We have had two or three try it on our forum and the four/five families that now monitor if have been able to delete the comments and ban the individuals shortly after the first abusive comments appeared.
God Bless