Becoming Your Own Advocate
In 2012, I applied to participate in PPMD’s Central Maryland LEADership training. The training was invaluable! It has provided so many opportunities for growth; networking opportunities with other parents, the acquisition of effective tools I now use in my community by way of outreach and training for other families. Not to mention, it’s helped to build my self-confidence as an essential member of my daughter’s IEP team. I now have a working knowledge about the special education process. Other community service opportunities have included; working with my church’s special needs ministry, talks at local schools, and a recent invitation to discuss the possibility of hosting PPMD’s mini IEP clinic for a local community counseling center in Catonsville, MD. Did I mention that PPMD even allowed me to co-present for one of the recent LEADership trainings? They did. It was scary, but for a first timer, I think I did okay. I cannot begin to measure the value of being an informed parent.
For our family, life after receiving our daughter’s diagnosis of Congenital Hydrocephalus, and all the “related disorders” that were secondary, has been a journey; one of pain, grief, denial, ultimate acceptance, resilience, and YES…faith. We have had to believe on so many levels for our precious Amanda. First, belief in the medical professionals that I like to call “our personal angels”, these folks guided us through some pretty rough days. And let’s not forget the home health aides that cared for us during the trying times, especially during Amanda’s post–surgical days. Finally there was the ultimate anchor; YES, you’ve guessed it…our belief in God (Queen 2014). We know that our road is a little less traveled than most, but that’s okay…we’ve got lots of good company, and the Parents’ Place of Maryland is at the top of our list of friends.
Advocating Beyond Your Child’s Needs
Parents’ Place of Maryland has made such a difference in our family’s life. I learned about them when our child was completing kindergarten and our funding for our home ABA therapy was ending. I was in desperate search of a way to continue our son’s therapy. I received an email that Parents’ Place was taking applications for a Health Leaders Class. This was exactly what I was looking for because at that time our health insurance did not cover ABA therapy. I immediately filled out the application and submitted it and was accepted. It was a weekend event. I learned so much about state government and how I could go and testify to support a bill. We were even taught how to share our stories with the legislature and was able to write our story and practice in front of a group.
That year there was a bill in the House that I went and testified for sharing my son’s story with the House of Delegates. The following year I testified in the Senate. I am very shy and was so afraid each time before I shared our story, but I just remembered that I represented all the children that need this therapy in the State of Maryland and that gave me the strength I needed. No one can share your story like you can. I could have never taken that step forward without the help, support, and education I received in the Health Leaders class from Parents’ Place. I will forever be grateful to them.
Creating Support Groups Within Your Community
My name is Uzoma. My wife, Cerue, and I have two children, Elinah who is 8 and Noah who is 3. Elinah was diagnosed with autism at the age of 4, while Noah was diagnosed at the age of 3. They have made a lot of progress since their diagnosis. Elinah still struggles with language, social skills, and loud noises. Noah has delays in the areas of receptive and expressive language, as well as sensitivities with touch, which can make activities like cleaning his face, combing his hair and brushing his teeth a challenge. Noah also has eating issues. He does not eat solid food, but generally drinks milk, apple sauce, pureed food and Cerelac (a wheat based cereal). They have the same pediatrician, who recommended they get evaluated to see what might be causing their developmental delays. We are grateful that their pediatrician encouraged us to seek help.
The Special Education LEADers Training Program has been a wonderful resource. I have participated in two workshop sessions and have learned a lot about different aspects of various disabilities, the IEP process, special education law, and the history of community healthcare as it relates to those in the special needs community. One of the most rewarding aspects of the training has been the opportunity to listen to the experiences of other participants as they shared their vision, strategies and intervention plans for their children. My wife and I are immensely grateful to the staff of the Parents’ Place of Maryland for organizing these workshops, and we look forward to participating in any future sessions. We are now better equipped to navigate through the education system with our children and serve more effectively as advocates for them. We have found the training helpful in supporting other families of children with special needs we encounter in our daily lives.
We also appreciate the books, handouts and outlines we were given, as well as the food. The Special Education LEADers Training Program equipped me to be an educated parent and a community advocate for my children and those in the special needs community. My wife and I have just started a support group at our church for parents and caregivers of children with special needs. I can say that the information I have learned from the Special Education LEADers Training Program was very helpful in this regard. We are happy to share the information and skills developed in the Special Education LEADers Training program. Thank you very much for all you do.