From One Aspie Parent to Another: It is OK to reach out for help!!
As I was driving my oldest daughter to high school today, I briefly reflected on those tumultuous years of elementary school where I was a slave to my cell phone looking every 5 minutes to see if the school would be calling me to come pick up my daughter- AGAIN! Those were not the best of the years. I thought back to the day of her first expulsion from kindergarten and the sinking feeling, that this behavior I was seeing could be that thing I learned about in graduate school- Asperger’s Syndrome. Even though I held a graduate degree in counseling and undergraduate degree in psychology, knowledge of the symptoms of a disorder does nothing to help one deal with and live with a life- long developmental disorder in your child. The thought was terrifying to me. The school system referred me to TEACCH. TEACCH was instrumental in diagnosing not only my oldest daughter with Asperger’s with mild OCD, but later my youngest daughter with PDDNOS and mild ADHD. TEACCH was a wealth of information to me when I was overwhelmed and was trying to educate myself on what to do to help my children. One of the biggest things TEACCH did for me was give me “permission” to reach out for support. I am an independent soul who tries to conquer the world on my own and asking for help is not in my repertoire of tools for coping. They told me to call the NC Autism Society for support and help with my daughter’s advocacy in the school system for an Individualized Education Plan (IEP). Why do I need help? I can do that on my own? Wrong!
This was one of the best decisions I made. I realized quickly that the school system took advantage of my lack of knowledge of the laws concerning disabilities in school and simply wanted to label her as a “conduct disordered” child and toss her in a BED/BEH (behavior focused classroom) and lock the door and throw away the key- so to speak. I was in over my head. I called the NC Autism Society and became and member and reached out for help and support. I have no idea why I was embarrassed to admit I needed help with a syndrome I knew nothing about, but I was. An advocate came with me to a crucial IEP meeting, and as she spoke and quoted laws and mandates and advocated for my child. I was so glad she was on my side! I was impressed. She fought to keep my child out of the secluded behavior-focused classroom and fought for us to get a shadow for my daughter. Not only that, but she came and did a demonstration in my daughter’s class to help the students better understand my daughter’s autism and her sensory needs to “normalize” some things for them at their age level when they might see her act out or throw a fit or have a public meltdown. The children who saw that demonstration NEVER bullied my child and seemed to give her grace when teachers and other adults could not. I have publicly mentioned NC Autism Society when I speak on ASD but never really thanked them, so please see this article as a word of thanks! You helped me, you supported me, you inspired me to do what I do now. I am an advocate and speaker from crowds in the 100s to 900s, anywhere I can find a soap box to stand on, you helped empower me to do for others what you did for me. So, as an ASD mom, and autism advocate, let me give you the reader permission to reach out! There are those of us who have been in the trenches longer and we want to help you. TEACCH and Autism Societies are a wealth of information and support. Do not wait, getting support is crucial.
Another piece of advice from my life and working in the trenches now for 9 years. EARLY DIAGNOSIS is key! Many times parents notice behaviors and people mention the autism label and many parents say “we just don’t want to label them” or “we think he or she will grow out of it” or “we don’t want them to feel different from the other kids.” Guess what! If your child is acting out at school or not excelling the school system is already giving them a label of either “conduct issue” or “lazy” or “he or she just wants their way.” Why not get the evaluation and get the right label. Your child already knows he or she is different, so why not celebrate that difference and get the proper label so that your child can get the help they need at school and other treatments and therapies. Occupational therapy, speech therapy, physical therapy, specialized diets, chelation, hippotherapy, vitamins and supplements, it can all be overwhelming but early intervention and finding the right protocol for your child will be a worth while investment.
Trust me, the school system is not your child’s advocate. You have to be. They do not always do “the right thing” because it is the right thing. With the help of TEACCH and NC Autism Society we fought for what my daughter needed and she is very successful today in a mainstream class in the gifted program in the public school system. So my three pieces of advice from life in the trenches: 1. Reach out for help; 2. Early diagnosis and therapies is crucial; 3. Advocate for your child and help them be as successful as they can be at whatever level they are on the spectrum. My daughter went from autism secluded classroom to mainstream with a shadow, to a behavior focused class, to home school, to a 2 teacher team in mainstream to regular mainstream class. There have been many struggles and trials but when I look at where she is now, I am so glad I had someone like TEACCH and NC Autism Society to point me in the right direction early on in her life and it has made all the difference in the world!