Special Needs Parenting :: Keeping Records

None of us go into parenthood thinking that our child may have Special Needs. Growing up, we may never have known anyone with a disability but these days it’s more common. Nonetheless, we never think it will happen to us but sometimes, it does.

It’s true that every child develops differently but we, as parents, often know when something is amiss. Milestones may be missed, there may be too many ear infections or speech and language may not develop like it has for other children around us or even for our own children at the same age.

From the very first time you realize something doesn’t seem right with your child’s development and you begin searching for answers, one of the best things you can do is take notes. Starting a notebook and noting each illness, each fine motor difficulty and every clue that you’re seeing will be an invaluable help to the professionals you see now and in the future. It’s much easier for a doctor or therapist to diagnose and treat when there’s a written history available. Plus, it will enable trends to be spotted, especially those that don’t at first seem relevant or related.

As your child grows older, you’ll find tremendous benefits of good record keeping. Keep track of everyone you talk with and each professional you see along with recaps of the conversation. This will enable you to refer back to earlier conversations and know the name and number of the people you encounter. For those of us who have walked through the maze of Special Needs services for some time, it’s apparent how hard it is sometimes to keep track of what we’re told and by whom. We have to become our own detectives at times as well as expert researchers. Having accurate and thorough records of our own makes it easier to find the pathways that will most benefit our children. Plus, you’re more likely to get the answers you need if you start every conversation asking for the name and direct number of the person you’ve called.

We’ve created a Letter of Intent about our daughter which contains information on education, banking, social, doctors and therapists, insurance as well as sections on our daughter’s diagnoses, skills and even the soap and detergent she uses. It is an enormously comprehensive look at every aspect of her past and current life and our goals for her for the future. It’s designed so her successor guardian(s) can immediately step in and take care of her.

The more information you can record in your notebook, the better it will be as time goes on. You may even want to keep separate sections for Medical, Government, Diagnoses, Education, Legal, etc. so you can quickly find the information you need at any time. While you may have many years of diagnoses, treatment and planning for your child’s future, keeping detailed records will make things easier as you move forward on this journey.

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