Stephanie C. Holmes, MA, BCCC, Certified Autism Specialist
As I was driving my oldest daughter to high school recently, I briefly reflected on those tumultuous years of elementary school. I was a slave to my cell phone, looking every five minutes to see if the school would be calling me to come pick up my daughter—AGAIN! Those were tough 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 an undergraduate degree in psychology, knowledge of the symptoms of a disorder does nothing to help one live with a life- long developmental disorder in your child. The thought was terrifying to me. The school system referred me to the TEACCH Autism Program, a program available to parents in North Carolina. TEACCH was instrumental in diagnosing not only my oldest daughter with Asperger’s and 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 giving 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.
I was told to call the North Carolina Autism Society (every state has one) for support and help in advocating for my daughter’s Individualized Education Plan (IEP) in the school system.“Why do I need help?” I thought. “I can do that on my own. I am an educated person.” I soon learned that nothing could be further from the truth.
Connect Families with Support and Resources
In working with special needs children and their families, one of the greatest things you can do is give special needs families’ permission to seek out support, then connect them with appropriate resources. Individual or family counseling alone will not be enough. Every state and community needs an organization like TEACCH. As a Christian counselor or caregiver, I encourage you to take time to get to know what is available in your area. If there are not many resources, support groups, and educational classes for parents, consider partnering with other clinicians to make these available. Pray about how God would use you to raise awareness and provide support to families in your community with a special needs child.
Reaching out for help is one of the best decisions I ever 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 my daughter as a “conduct disordered” child and toss her in a BED/BEH (behavior focused classroom) room. I was in over my head. I called the NC Autism Society, became a member, and sought out help and support. I have no idea why I was embarrassed to admit I needed help with a disorder 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/aid for my daughter. Not only that, the advocate also came and did a demonstration in my daughter’s class to help the students better understand my daughter’s autism and her sensory needs. This “normalized” some things for her classmates and helped them understand what was going on when they saw her act out, throw a fit or have a public meltdown.
The children who saw that demonstration never bullied my child again and seemed to give her grace when teachers and other adults could not. NC Autism Society helped me, supported me, and inspired me to advocate and speak up for other children. They helped empower me to do for others what they did for me.
As a counselor, I encourage you to tell your special needs’ families to reach out, because getting adequate support is crucial to the health of the entire family. Visit Autism Speaks for a directory of available resources in your state.
Encourage Screening and Early Diagnosis
Many times, parents notice Autistic-type behaviors, but say “we just don’t want to label her” or “we think he will grow out of it” or “we don’t want her to feel different from the other kids.” However, if a child is acting out at school or not excelling, the school system is already giving him a label of either “conduct issue” or “lazy.”
Why not get the appropriate evaluation and get the right label? The child in question already knows she is different, so why not celebrate that difference and get the proper label so that the child can get the help they need at school, as well as other treatments and therapies? These may include occupational therapy, speech therapy, physical therapy, specialized diets, chelation, hippotherapy, vitamins and supplements, and more. I admit, it can all be overwhelming, but early intervention and finding the right protocol for a child will be a worth-while investment.
Unfortunately, the school system is not always a child’s advocate, so parents must step up to the plate. Often, classes are overcrowded and teachers are overworked. However, there are programs in place to help special needs’ children…but parents must take the intiative to seek them out. With the help of advocates and support, my husband and I fought for what our daughter needed. Today, she is very successful in a mainstream class gifted program at our local public school.
Life in the Trenches
From our own experience as well as working with other families, I have three main pieces of advice:
The journey is not easy, by any means. That’s why no family should do it alone. My daughter went from an autism-secluded classroom to a mainstream class with a shadow/aid, to a behavior focused class, to home school, to a two-teacher team in mainstream, to a regular mainstream class.
There have been many struggles and trials along the way, but when I look at where she is now, I am eternally grateful for the people God placed in our life to educate us about autism, connect us with resources, and help us advocate for our daughter. Will you be that for someone else?
Stephanie C. Holmes, M.A., is an ordained minister and Licensed Christian Counselor with the Board of Examiners for Georgia Christian Counselors and Therapists and was formerly an LPC in North Carolina. She is a Board Certified Christian Counselor through the AACC’s Board of Christian Professional and Pastoral Counselors and a Certified Autism Specialist. Stephanie’s career path changed when her oldest daughter was diagnosed with Asperger’s Syndrome in 2004. She began to change her focus to the world of IEPs and 504 educational plans and understand how to help special needs students in the classroom. In addition, she also helps families deal with their frustrations and challenges having a special needs child. Stephanie practices counseling at her home church, Calvary Atlanta, and advocates for special needs families.