Awareness at its Greatest

I'm dusting off the old blog and adding a new entry. Why the long pause in posts? It is only indicative of how well Harper has been doing. She has been trucking along with her weekly PT, OT and DT until the inevitable Askea news...we're moving. This time, to Hattiesburg, MS. As we began to break the news, a bit more slowly this time, we were met with some opposition however I believe it only to be out of genuine care and concern that Harper wouldn't receive the same top notch therapy and services as she had been in AR. My simple but thorough answer...God will never take us where He won't sustain us. See, God gave us this beautiful blessing and He was sending us to MS. There wasn't any doubt in my mind that He didn't know what He was doing and would only send us to a place full of possibilities and fulfillment for not only Miss Harper Faye, but the entire Askea family.

I will spare you all the intricate details of the move itself and fast forward to life for Harper in Hattiesburg. Even before our official move, we met some wonderful people, not by accident I am sure, who offered very beneficial information for services and programs for Harper and our family in the area. Hattiesburg is home to a local ARC, Association for the Rights of Citizens with Intellectual and Developmental Disabilities, chapter, www.hattiesburgarc.com/. One of the many programs offered by the ARC is a Mother's Day Out specifically designed for preschoolers with disabilities. It is staffed with a RN, retired special needs teachers and ample volunteers who just love being a part of these kiddos lives. Harper participated, for her first time, this past Thursday and LOVED it! The summer provides a fabulous program, the Abby Rogers Civitian Camp, a week long adventure for children and adults with significant disabilities, http://www.abbierogerscivitancamp.org/ We have met many of the volunteers who have raved about the experience. The University of Southern Mississippi is also home to varied programs for special needs children. The Children's Center for Communication and Development, www.usm.edu/childrenscenter, is housed on campus and the internationally renowned Dubard School for Language Disorders can also found there, www.usm.edu/dubard, which are all programs offered to Harper in the coming months/years.

The sentiment regarding Harper has been consistently echoed during our brief few weeks in Hattiesburg. Because of all this area has to offer children in the special needs community, there is a respect for and openness we haven't experienced so freely. The community is aware of these children and dotes on them every where we find ourselves; whether it be in the check out line at the local market or sitting in the waiting room at the doctor's office. People flock to Harper and have such kind and considerate things to say about her and children like her. I am refreshed by the warmth we have found here and the awareness the services provided has brought to Hattiesburg. We have, however, met one glitch in this mentality, which you will read about in the paragraphs to follow. There is always at least one exception to the rule.

 We were thrilled beyond belief Harper has been accepted into the Children's Center for Communication and Development, which provides an interdisciplinary team approach to the assessment and treatment of communicatively and developmentally delayed children, through the University of Southern Mississippi. The main difference with the CCDC, is they work closely with our school district to provide speech-language pathology, special education, audiology, physical therapy, occupational therapy, psychology, augmentative/alternate communication, at-risk followup, parent education, and a resource loan library, all with the common goal of incorporating Harper into Kindergarten at her appropriate time frame. I encourage you all to check out their website for a more detailed synopsis of what all they can offer Harper. There is also a link to their Facebook page as well.

The process of incorporating Harper into their therapy programs has been a bit more involved than when she began at Easter Seals AR, simply due to the extra layer of adding the school district into the process. We began with a meeting of a team including the CCDC director, therapists from CCDC, our service coordinator from First Steps, which is our local Early Intervention Program, and a representative from the school district. In a combination of their observation of Harper, a series of questions they all asked regarding her history and most recent status of therapy and my own list of goals I have for her through May 2012, they were able to compile the information and complete a comprehensive assessment team report. This report was submitted to the school district coordinator and then presented before a team to determine a diagnosis for Harper, which would serve as a guideline for her therapies. Two days ago, I received a phone call from the CCDC's director who not only gave me the IEP, Individualized Education Program, meeting date/time, but provided me with a bit of information to prepare me for what we may be facing during that meeting. It seems, the team from the school district has determined Harper's diagnosis to be one of an Educationally Mental Retardation rather than the most appropriate of Developmental Disability. I was asked how I felt about that diagnosis to which I responded, if the terms on paper meant nothing more to Harper than words on paper, I could look past the team's ignorance and accept it however, if the diagnosis would now or in the future have a negative impact on Harper's educational experience, I had a huge problem with it.

What is the difference in the diagnosis, you may be asking. The EMR diagnosis implies a child like Harper is NOT capable of learning. Simple as that. End of discussion. This would interfere severely with her opportunity to enroll her in the standard  public school system, as I understand it. I am shocked and saddened that this sort of backwards, barbaric thinking even still exists! Especially in an area so fluent in services aimed to tear down these types of stereotypes or absurd limitations. I can not speak for all Down syndrome children, but in reference to Harper, any one who has spent any time with her would surely tell you, she is most definitely capable of learning. Quite contrary, a diagnosis of Developmental or Cognitive Disability would imply Harper is very much capable of learning, only there may be a delay or a need for a different manner of learning, but she can and will learn.

I am calling on all of Harper's prayer warriors to pray for a corrective diagnosis to take place! During next Friday's meeting between the CCDC director, our school district's representative and myself, I will be given the opportunity to state whether I agree or disagree with the district's diagnosis. Although I have that opportunity, I have been prepared there very well may not be an alteration in such. I am believing and trusting God hasn't brought us this far and all the way to Hattiesburg, MS to allow any limits to be placed on Harper by any one person or team. God created this most amazing human being and has wonderful plans for her. It is my job, as her mother on this earth, not to allow any one or any thing stand in her way of the great works she will do! God doesn't make mistakes and we are all going to be surprised and in awe of Miss Harper Faye! I know I already am and this is just the beginning. As to how it happens exactly, I am leaving the details up to God as God is in the details. Whether it be a change of heart/mind by a member of the team before our meeting this week or through something I say during the meeting itself, I am trusting God to take care of it and handle it in His own way.

Will you please join me in prayer? We mustn't allow this type of thinking to persist. It is a very backwards mentality and I have already expressed, we are not about going backwards or meant to live in the past. It isn't just about Harper, but the many other children with Down syndrome who deserve the same, equal opportunities as any other child. To refer back to a former post, being an advocate for Down syndrome was born in me at the very same time Harper was born to me. Please make your friends, families, coworkers, pastors, congregations, etc aware that this is still a very real occurrence but it MUST end! I am asking you to pass this post along to any one who will join us as well. There is power in prayer and strength in numbers.

Thank you again from the bottom of my heart!