I 'met' Shannon just recently through another friend, and I was immediately impressed because of her advocating know-how.  I asked her to write up an article for JourneyFEST, and she kindly obliged.  Shannon lives in New Mexico, but her ideas are still applicable to Texas!  Thank you for your wonderful article, Shannon!

My Experience as an “Amateur Advocate”
By Shannon L. Nissen

My story starts off just like any story, I had a very precocious toddler who was smart as a whip and had a terrible temper. I like any other mom thought it was the “terrible twos” that happened to go into the terrible three’s and four’s. What I didn’t realize at the time is that my Son was “Twice Exceptional.” What this is for those of you who are new to the term, is a child who not only is “Gifted” or with a higher than average IQ, but also presents neurobiological disorders. My son has a laundry list that affects him daily; including Sensory Integration, ADHD, Tic Disorder, and other varying diagnosis. There were many problems with the Public Education system and the Special Education testing that I had requested for him. In fact, the first time he was tested, he didn’t qualify based on his test scores in first grade. Because I am the type of person who follows her gut instinct, I knew that the school system was wrong and I needed to find a way around them and their testing results and to get my son the help he needed in order to have a positive school experience. What I found that gave me a sense of safety when dealing with the school administration and school district officials, was an Advocacy Agency to help me navigate the IDEA Act and what the Schools can and cannot do to my son, I still use them to this day and will continue to until he has graduated High School. I also found a fabulous family physician who, was not only a “Gifted” individual but also had some of the same struggles with her daughter going through the Public Education system here in Albuquerque, New Mexico. She suggested that we do ALL the necessary testing to see what was actually going on with my son. He had a battery of tests including being seen by a neurologist, a neuro-psyche evaluation, and a sleep apnea test, just to name a few. He also saw a private OT who was highly recommended by counselors and physicians for 3 years.

Generally, an Advocacy Agency is a non-profit organization who specializes in making sure that the rights of a group of individuals are not infringed on; and in my case this group was for children who struggled with behaviors issues due to neurobiological disorders, and that were no fault of their own. During my time with my first advocacy agency, I learned a great deal. In fact, I learned that my son’s disabilities could actually be affecting his IQ, causing it to be lower than it actually is because of his Sensory Integration issues as well as the impulsivity brought on by the ADHD. After learning this, my son was re-tested for Special Education and qualified as “Gifted with Factors.” Some testing will allow extra points to be considered for those kids who have learning disabilities, or other neurobiological disorders that affect their cognitive abilities. This opened up a whole new world for us. We had to provide our specialist and private evaluations and took these with us to every meeting at the school in order to show that my son was just not acting out in anger because he wanted to, but to show that he indeed has a disability that causes the behaviors he was exhibiting. In the school systems because he was now considered a “Special Education” student, he had more protection surrounding him and his angry outbursts. The school now had to listen to us and our medical experts that had seen our son, because I had these things and kept a 3” Binder organized with all his IEP (Individualized Education Plans), BIP (Behavior Intervention Plans), etc. The school now HAD to take action and try to use strategies that would help my son calm down and try to self-regulate when a blow-up or melt-down occurred. We have been through several re-iterations of IEP’s and BIP’s, every year; but I never give in and if something that the school is not working for Scott then we go back to the drawing board. Their final say is never final. I wish I could say that my story ended here and everything was perfect, in reality though; it was far from it, and we continue to struggle today and my son is in 6th grade. 

My tips for being the best advocate you can for your child, no matter what their needs are, is to first find a supportive physician who will listen to you and your concerns for your child. If you don’t want to rush to put them on medication, take some time and find out about the medications the Dr. is suggesting and do research, check what they are, what they treat, how they work; then go back and ask questions, get answers and voice your concerns. If you can’t find a Dr. that will take you seriously and has good solid advice, then find another until you are happy. Your peace of mind and the welfare of your child to the highest of standards is what you are entitled too as a parent. Second, find an organization that can help you navigate through the “red tape.” I am not an expert in the IDEA Act, nor do I have time to become one, as I work full time as an Accountant. Trust the experts, either become one yourself or find someone who is. Without the support of my Advocate, I would not be where I am today with my son. Third, search out others in your community who are dealing with the same issues. Search for agencies on the internet in your area, call those agencies, and ask for help finding the right spot for your situation if you don’t fit within their organization. Ask all the agencies about support groups for your situation. The more people you tell about your story, the more people you will find to share your experiences with and who can provide insight for you. Don’t be ashamed of your parenting skills or feel like your child’s behavior is a reflection of your parenting, they can’t help it. When other people are staring and being judgmental, just remember that they have never walked a day in your shoes and have not felt the pain, the guilt, the shame, the joy, the love, and the determination that you have when it comes to your child(ren). Once you are on a path to getting diagnosis, research, research, research because you know your child(ren) and their needs better than anyone else. I did amazing amounts of research the minute ADHD was mentioned, treatments of, medications, etc. I knew more when I went to the Psychiatrist’s office then she knew what to do with. I was informed and then I could make informed decisions with her guidance. I didn’t let them make the decisions for me and then feel pressured to go with what they thought. After you have a diagnosis, don’t be afraid to ask for what you need. If you are somewhere where the PT or OT, keeps changing, then cite that your child is not getting stable treatment, and those changes are affecting her and limiting her progress. If you ask and they say “No” then you are right back where you started. I have found that the squeaky wheel gets the grease. So be a little squeaky when it comes to the care your child deserves. Finally, once you start receiving information back from Doctors, Clinicians, Testing, and Schools put it in a binder and organize it. Take everything with you including reports from other specialists, research you have done, questions you have, and anything pertinent to your child’s situation so that the person who is assessing what is needed by your child is aware of everything that they experienced already. 

Knowledge is power, the more you are informed about everything from your child’s diagnosis, what the manifestations of the diagnosis, the medications used to treat, the therapies used to treat, and if you have someone by your side who can steer you in the right direction like an advocacy agency, you will become the best protection your child can have.

Advocacy: My Experience as an Amateur Advocate