Within a few hours of his birth, "Team Quinn" began to take shape. From the pediatrician who first broke the surprising news, to the cardiologist who pronounced his beating heart to be "perfect" and "strong", to the hospital social worker who set in motion the wave of support from the existing Down Syndrome community, our team was already forming before we stepped foot out of the hospital.
So far in this journey we have been fortunate to have had team members who are kind, skilled & knowledgeable, each bringing their own set of expectations & goals for Quinn. We have seen time and again what a huge difference it makes when the person working with him knows what they are doing, how to manage his stubborn nature, and how to elicit the best from Quinn. When we began this school year in a new program, with a new teacher, the bar had already been set high. Sparing actual details, let's just say that unfortunately this new setting was not a good match for us. On paper this program sounded great. The reality left much to be desired. As it so often does, theory trumped practice.
Emergency IEP meetings were called and my own education on "how things work" began with a fury. I studied, I wrote letters & meeting notes and undertook learning a whole new language. One that contains magic phrases like "most appropriate setting" and "least restrictive environment." We rallied the troops & had our very own parent advocate by our side keeping us out of the emotional swirl & focused on the task at hand... finding the best place for Quinn to learn.
In the end, we got what we asked for... Quinn started back at his old school this past week with a new teacher. We still have some growing pains to address, but are so pleased to say that our team is once again falling into place.
I often say how much I wish that every parent had such a team available as their child enters the world & grows through different stages. If there were only a fraction of the support we have had with Quinn, I am quite certain that this world would be a much happier place.
Day six. STILL ALIVE.
10 hours ago