In a hospital there is a job entitled Patient Care Coordinator. This person ensures that a medical facility is providing high quality care services. They work with administration, staff, and patients to reach health care goals and to keep the lines of communication open. When your child requires the support of special education, as the parent, it often feels as if that job description is synonymous with yours.
While all members of your team are committed to helping your child you are in fact the biggest stakeholder at the table. Sitting in this role can be incredibly overwhelming. At the school based TEAM meeting the parent concerns drive many of the decisions made and are an integral aspect to the development of the students vision statement. When in the doctors office discussing medication trials you are told “You can try mediation a, medication b or do nothing it’s really up to you.” When signing your child up for an extra curricular activity you do your best to match their preferred interest with the coach and/or instructor that will ultimately “get him” and “stick with him” through the more challenging moments.
When things are going well you feel a sense of calm and reassurance that it is all going to be ok. You’ve made the right decisions and can breathe easy. However, during those more challenging moments the weight of the world is on your shoulders. It feels as if you’re running through quicksand sinking a little deeper with each step but knowing you have to keep moving forward to get yourself and your child to solid ground again. It is an incredibly scary, frustrating, isolating, and exhausting experience.
Here’s what I’ve learned: Nothing lasts forever good or bad…As the ‘parent care coordinator’ your plan is to keep moving forward, asking questions, seeking support, and expressing your concerns. If you stick to this plan the world won’t seem quite so heavy and the quicksand loses its strength to pull you down.