As the parent of a complex special needs child, you fight everyday for your son or daughter. At times, it feels like a war zone with many battlefields; at home, school, and in the community. You may be treated like “only the dumb parent” when you explain your child needs to others.
Care and services to disabled children and adults is generally provided by diagnosis. Diagnosing a child with developmental disabilities is not always simple and clear. Autism, for just one example, is a spectrum disorder with many levels in the spectrum. Thus, a diagnosis of Autism could mean many things. Other children may experience symptoms of multiple diagnoses including various developmental disabilities, Autism, behavior disorders, a combination of mental illness and developmental disability diagnoses.
Some children are so complex they stump parents and professionals alike. Finding solutions based on diagnosis is often frustrating for the child, parents and professionals. These complex children are often described by the professionals involved in their care as "one of the most challenging patients that I've ever worked with". They may not respond to traditional programs or treatments. Individual solutions are required.
The battlefields are not only for parents of severely developmentally disabled children and adults. Parents of high functioning Autistic, Down syndrome and all types of disabilities experience struggles to get services for their children.
Services to disabled children and adults are often managed by the team concept. I recently bought a mug that read “I survived an IEP”. Most of us can identify with that slogan. IEP (Individualized Education Plan) or ISP (Individualized Service Plan) meetings can definitely be a battlefield. Once the conflict begins, nothing really gets accomplished. The victim can be your child.
There is a scene in the movie As Good As It Gets where Jack Nicholson’s character asks a psychiatrist waiting room full of patients “what if this is as good as it gets?” During frustrating periods for your child you ask yourself what if this is as good as it gets. Is there nothing you can do to make things better for your child and his family? If the medical, educational and social work professionals have no answers how can you find the answers for your child?
I struggled to understand my son better so that I could advocate for him with medical, educational and governmental professionals. I tried many approaches at home to find his comfort levels and strengths. As I knew him better, I learned how to adapt traditional procedures to workable solutions for him. I developed a documentation system to demonstrate his strengths, weaknesses and needs to the professionals involved in a way they could easily absorb. As I was able to communicate him, as he is, to the professionals involved in his life, educational and medical approaches became informed recommendations and not another gamble.
One goal of Parenting Your Complex Child is to be a peace plan aimed at helping you reduce the conflict surrounding you and your child. You will note I said “reduce” the conflict. There will always be hurdles to climb. To me, advocating does not mean drawing battle lines and digging in for a fight to the finish. I believe that advocating becomes easier when you are able to communicate and demonstrate how your child really is rather than arguing or becoming a skilled presenter. It is about team building and mutual understanding of a child’s needs.
No one knows your child the way you do. That knowledge is the most important key to unlock your child’s future. We talk in my book, Parenting Your Complex Child, my blog and this website about how you can use your knowledge to create a life that works for your child and his family. We will not tell you what your child needs. You are the expert in your child.
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
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