by RDI Consultant, Kathy Darrow
My first thought when I heard the word autism…for my then almost three year old…was (with a ~sigh~), now what? Like most parents who hear those words, I was dealing with my own emotions and the emotions of others around me, all the while secretly hoping that the neurologist would say, “No your son is fine”. Before my appointment, I knew there was something not quite right. The appointment was just a confirmation of my fears. Once the words were uttered by a doctor, I knew there was no escaping my new reality. Almost five years later, I would have another trip to that same doctor, but with a different child. I told him what I saw in my (then) 18-month old, and he told me that he knew what I was dealing with. This was one instance where the second time around was NOT easier.
With those years behind me (my children’s autism remediated) and wisdom gained, I enjoy being in the same company of many “been there, done that” parents. There is something to learn from each and every one, and I have let their knowledge guide my decisions through the years. It is my hope that the following recommendations (learned through my successes and failures with my own children, the wisdom of friends, and the reflections of parents I work with), will help your family navigate the emotions and the decisions after hearing the words, “Your child has autism”.
1. Acknowledge your emotions. I personally was freaked out with the first diagnosis and had a complete meltdown after the second. Some of it is a blur…and I definitely choked down my emotions. When your child is just diagnosed with autism, acknowledge your emotions and the stages of those emotions. This can be heavy…and in the beginning you are simply trying to wrap your head around it all. Planning and reflection are two of your best tools. Revisit these often.
2. Do not let the present state of your child’s condition deter you from believing in his/her remediation. Do not let anyone take away your hope of believing in your child. Truth be told, this took some time for me to truly understand. I spent a lot of time reacting. I eventually realized that I needed to be the one who knew exactly what I was doing…and WHY! Fine tune *your* expert for your child and family. Being educated on all the options helped me to choose the best ones for my family. It is crucial to prioritize the goals. The diagnosis itself made me feel incompetent, but working through those emotions helped me gain that competence back!! We are definitely warriors when it comes to our children!
3. Because of what we know, and because we are raising the bar for our children with autism, look at proven interventions based on child development. This involves becoming a detective to the different choices that are available. My mantra was *raising the bar*, and to do this, I looked at what I wanted for my boys’ future. I recommend writing a mission statement for your child for five years from now and 10 years from now. Keep in mind that a young adult’s quality of life includes friends, being sought after for a job, and marriage (if they choose). The list goes on. As a parent, I took a long hard look at what was standing in the way of their ability to reach these goals. What did my children with autism need from me to get them to the end point? In essence, I was looking ahead to get back! That getting back is rebuilding….restoring my children’s brains to foster thinking, reflecting, perspective and numerous other elements of dynamic intelligence.
4. The *gut* mattered! My older son did not have any apparent health issues that coincided with his autism. However my younger son, in addition to autism, presented with a host of other conditions that reflected his lack of body awareness and allergies/digestive issues. This is where I learned that our community really pays attention to poop!! We can no longer ignore the body brain connection with regards to the gut, digestion and movement (reflexes). Addressing these and any other health issues alongside developmental milestones is the one two punch that many children need for a strong foundation of steady progress.
5. More is not always better. There is no shortage of expenses when it comes to treating autism. Since I do not have a money tree in the backyard, I must either have a therapy funded or pay for it myself. But just because an option is funded, does not mean it is the best thing for our kids. Initially, understanding the underlying tone of the goal of each therapy helped me to understand that I needed to address foundational understanding in my children. I knew I had to restore the guiding relationship that typical development shows us! Simply trying to get my children to act a certain way without the foundations in place was building a house of cards when it came to their long term progress. An example of this is language. I so wanted to hear my child talk to me! He learned to use words before he knew the reason for communication. When I knew better, I did better. With my second son, I fostered the many channels of true communication that need to be in place before *words*. What a huge difference!
6. For these foundations, begin with restoring the fundamental guiding relationship that was missed the first time around because of autism. This relationship breaks down as our children give less feedback…we do more to try and get that feedback. Before we know it, we are doing all the work in an interaction. We are prompting and ultimately thinking for them. As a result, they become controlling just to stay safe in a world that is constantly changing. It is a vicious cycle. Looking at the history of the cognitive revolution helped me to understand the *why* of what I wanted to accomplish to effectively help my children. I also took another look at how babies typically develop. I knew this information by intuition, as you do, but I needed to break it down to make my actions more deliberate for my sons **do over**. I knew that whatever I chose needed to have a strong foundation in child development like the work of pioneer psychologist, Vygotsky. The role of intrinsic motivation, resilience, competency and thought as the building blocks for building our children’s minds is crucial. In comparison, Google behavioral conditioning, based on the work of Skinner, recognizes the role of behaviors to change behaviors as compensation for lack of developmental milestones.
7. Compensation is not the same as remediation. Mental process cannot be taught through rote repetition. Children can grow up smart in skills with no ability for friendships. If they are taught language and social skills as a scripted program, it eventually falls apart without the basic developmental milestones. As the child’s mind is expected to become more advanced in perspective taking, start with development, and add compensation strategies as needed. Raise the bar! Do not settle for rote skills and scripts as a replacement for true, authentic mindfulness! You may discover as you review your options and resources that the best place to start will be a program rooted in relationships . RDI will focus on restoring your child’s ability to be mindful of their experiences with you, along with being competent in their social interactions as you guide them, ultimately building the mind for success in the real world that is ever changing
