My first thoughts when I heard the word Autism…for my then almost 3 year old were ( 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 realty. Almost 5 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 1.5 year old, and he told me he knew *I knew* what I was dealing with. This is one instance where the 2nd time around is 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 through the years let their knowledge guide my decisions. It is my hope that the following recommendations I have learned through my own children, (my successes and failures), the wisdom of friends, and the reflections of parents I work with … will help your own family navigate through the emotions and the decisions after hearing those four words “Your child has Autism”.
1. Acknowledge your emotions. I personally was freaking out with the first Diagnosis and having a complete meltdown after the second. Some of it is a blur…and I definitely choked down my emotions. Your child was just diagnosed with Autism….. acknowledge your emotions, and the stages of those emotions. This is a heavy…and in the beginning your are trying to wrap your head around it all. Planning and reflection are two of your best tools. Revisit this one often…
2. Do not let the present state of your child’s condition deter you from believing in your child’s remediation. Do not let anyone take away the 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 options helped me to choose the best option 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 children with Autism, look at proven interventions based on child development. This involves becoming a detective to the different choices laid before you. 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 5 years from now and 10 years from now. Keep in mind a young adults quality of life includes friends, being sought after for a job, marriage if they choose, and the list goes on. I took a long hard look at what was standing in the way of reaching goals as a parent. 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 childrens brain to foster thinking, reflecting, perspective, and numerous other elements of dynamic intelligence.
4. The *gut* does matter! My older son did not have any apparent health issues that coincided with his Autism. My younger son however, 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 are no shortage of expenses when it comes to treating Autism. Since I did not have a money tree in the backyard, I had to either have a therapy funded or pay for it myself. Some options may be funded but that does not mean it is the best option for our kids. 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 would be 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 because of Autism. This relationship breaks down as our children gives 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, as a parent, understand the *why* of what I wanted to accomplish and effectively help my children. I also took another look at typically developing babies. I knew this information by intuition, as you do, but I needed to really break it down to make actions more deliberate for my sons **do over** in his development. I knew that whatever I choose, it needed to have a strong foundation in child development like psychologist pioneer Vygotsky. The role of intrinsic motivation, resilience, competency and thought as the building blocks for building our children’s minds is crucial. Google In comparison, behavioral conditioning , based on the work of Skinner, recognizing the role of behaviors to change behaviors as a compensation for lack of developmental milestones.
7. compensation is not the same as remediation. mental process can not be taught through rote repetition… Children are growing up smart in skills with no ability for friendship etc They were taught language and social skills as a scripted program, which eventually falls apart without the basic developmental milestones as the childs mind is expected to become more advanced in perspective taking,e tc Rule of thumb, start with development, and add compensative strategies as necessary. Raising the bar! Do not settle for rote skills and scripts as a replacement for true, Authentic Mindfulness!
8 . Video your child and video some interactions with yourself and your child. Generally speaking no one likes to video their children throwing a fit or crying, etc… but please video. These videos will be crucial to document progress. In addition, journal your thoughts and reflections as you start your journey. Video yourself interacting with your child and take note on how much work you are doing compared to your child to keep the interaction going. With a typical child there is a give and take with each person sharing each others perspective.
9 Once you have educated yourself, Help to educate any support family, friends, school districts, doctors, or therapists. This will help them know that you have carefully researched your options. Creating a community of support not only helps your family but will ultimate help other families starting this journey. That community of support, both in person and online, will some days be a saving grace for a bad day, or a place to scream progress from the mountaintop! Or a babysitter for some Non autism relaxation away from home!
10. As parents, we want our children to reach their potential. The very core of relationships is understanding perspectives, learning from experiences and being able to apply that knowledge to maintain friendships. This ability begins in the first 6 months of an infants life. the building blocks of understanding self and how others fit into the Basics of how we view the world continue to develop. Imagine if we could not reflect back on positive memories in our own lives, times when we borrowed perspective to form our own conclusions.
You may discovery as you review your options and resources that the best place to start will be a program rooted in relationships to restore dynamic intelligence. RDI ( relationship development intervention) will focus on restoring your child’s ability to be mindful of their experiences/memories with you along with being competent in their social interactions as you guide them, ultimately building their mind for success in the real world that is ever changing.