Special Needs Advocate Power
There are many reasons to find our power, our special needs advocate power, so that we are able to advocate powerfully for our children and loved ones. Our priority is to ensure as best we can that they are capable of being fully functional and expressed people in their world. We want their world to be fulfilling and we want them to be safe. It does not matter what the special need and condition may be, whether it is autism, asperger’s syndrome, ADD/ADHD, having a sensory processing disorder, a central auditory processing disorder, being dyslexic or having any other learning disability, developing our personal power to stand up for what is needed for our children will be critical to their future successes.
Our power will come from a foundation we build by knowing and understanding the following:
- The laws; the legal aspects of being disabled and what is not allowed, not acceptable, not appropriate.
- The condition and challenges … what is the diagnosis
- Being able to comprehend how the challenges are affecting their interface with the world around them
Getting it right starts here. When you are striving for your loved one, talking with doctors, speaking with therapists, meeting with school staff on an IEP, conferencing with neurologists, social workers, anyone who has the alphabet behind their name it may feel overwhelming. No two ways around it…there is a lot to learn.
My goal is to be able to tweek our memories or guide our thoughts as we prepare to step up in on our child’s behalf. In order to ease this sometimes emotionally charged communication I’m developing a couple of downloadable documents. Their purpose will be to serve as a process guide for being a powerful advocate.
ELEMENTS FOR ‘ADVOCATE POWER’
Do Your HOMEWORK
Anytime you are told a specific diagnosis, well then, its time to dig into that diagnosis so you really ‘get it’. Developing understanding of what you have been told is … ‘going on’ … with your child is going to open up the first elements of your personal power. Just as a house foundation has concrete blocks that are the outline for where your house is going to set on your property, your power has to have an outline too. Your education in what conditions and challenges face your child will become this structure for being able to powerfully speak up.
One of the things that I am, as time permits, (and we all know how confining time can be with all we juggle) is to begin to learn more about the brain and how it works. Years ago I served as a licensed EMT and anatomy was my favorite subject. I’ve included a link here to a resource that will certainly be worth our time. Just take the time to go through the lessons as it is like going to school to learn the anatomy of the brain. Click Here! How cool is that!
KNOW WHAT YOU’RE FACING – Understand the diagnosis
You’ve gotta’ know everything you can reasonably absorb about their condition and challenges. This way you can ask for appropriate supportive services that will give your kiddo a ‘step up’ addressing their physical, mental, and emotional well-being. After all each child is going to have to get along in the world as they grow older. Granted this will look different for each one of them, so our job today is to give them what they need for that future day. Knowledge is the first element in your ‘power’ arsenal.
KEEP IN MIND
You are going to be advocating with professionals that are now, or will become, a part of your child’s life. This makes it important to know some of what they know, get a sense of their strengths, and what expectations they have to meet under the law. Inside this KNOWLEDGE foundation you create is where your floor will be poured, just like the cement foundation poured into a physical home that is built on land. You want your base, this poured in floor of knowledge to be ‘rock solid’.
Your HOMEWORK and UNDERSTANDING the diagnosis…this is your ‘rock solid’ foundation.
The link below will be helpful if you have a diagnosis or not. Specialists are the folks who will get the ball rolling to identify why and what is happening. Why isn’t he rolling over? Why doesn’t she wave bye-bye or shake her head. Why doesn’t he seem to mind when I leave or take much notice when I come back? What is your gut already telling you; that “somethings not right”? If your child is not meeting their age appropriate milestones this is likely a concern for their future. Time is of the essence! ACT on what your gut is telling you.
Use this link to help analyze:
This is a wonderful resource for assessing where your baby or child, ages infant to 5 years is developmentally. And as this federal guideline (checklist) makes clear, act early on getting services up and running for your kiddo. This is SO very important.
SECOND – Seek out and get SERVICES
Look…I know all to well that this takes time!!! And we all have a lot on our plates nowadays and time is in our world a precious commodity. But the time you invest could mean you are going to be ahead of the game, ahead of that curve ball, before things become 20 times more difficult. Keep in mind that when you see something is wrong, your pediatrician will refer you to specialists. If you are working a full-time job, balancing that with being a caretaker, my heart goes out to you.
Your Pediatrician’s Role
Keep ‘well baby’ appointments and be sure and talk about what is happening and what you are worried about. Take a list of the things you are observing. The link above can be used as an assessment tool that you can give to the health care professional (doctor, physician’s assistant, nurse, social worker, etc.). Keep in mind that when you see something is wrong, your pediatrician will refer you to the necessary specialists.
Good doctor’s listen to the parents, after all you are with your child 24/7 and will be the one who has observed how things are going.
Have something you’d like to share with me? Please comment below or send me an email to
There is a lot to think about here…so I hope you have found something helpful.