What I have learned from our Autism Spectrum experience so far is that there is a huge potential to affect change and create improvements.
It’s hard at first, but we dug it out and pushed that plow. After seeing how far we could go, we started to apply the same principles that got us to those successes and we have been able to continue to replicate that success.
Being an Autism Parent is such a full time job that never ends. Here is a short list of factors that helped to propel us to success.
1. YOU AS THE PARENT ADVOCATE HAVE TO ACCEPT TOTAL RESPONSIBILITY TO BE IN THE DRIVER’S SEAT.
Buckle in and take the wheel. Yes, the experts are there to guide you, but you have to take ownership of the decisions and find what works best for your child. No one knows your child like you do. If something is not working, shout it out, change course. If you think your child can do more, RAISE EVERYONE’S expectation on the TEAM.
2. YOU HAVE TO BE ORGANIZED.
Find a system and schedule that works for you. Keep all the reports from every member of the TEAM (Doctors, Teachers, & Therapists). Review the status regularly. Read the reports and compare the current progress of your child with both the past and expected progress. Steady, consistent, and organized.
3. WEAR THE HATS…ALL OF THEM.
It’s just the way it is. Accept it and move on. You need to establish a knowledge base in Speech Therapy, Behavioral/ABA Therapy, Sensory Issues (Occupational & Physical Therapy), Stimming, Early Intervention, FAPE , IEP, Standards Based IEP, Common Core, Accommodation, Modification,Learning Disorders (Dyslexia, Dyspraxia, Dyscalcula, Dysgraphia, Attention Disorders, Executive Functioning Issues), Anxiety, and Nutrition/Diet. And there are always more. At first it’s just the cliff notes version. You will be overwhelmed, but you will start to wade into deeper waters and feel more confident.
4. DATA IS YOUR NEW BEST FRIEND. DATA DOESN’T LIE. REQUIRE DATA.
Do not accept or rely on anecdotal stories and descriptions of your child’s progress. If you want to change their treatment or education plan, ask for data. Request and schedule meetings to review your child’s program. If the TEAM wants to change treatment or an education plan…ask for data. Even if you are unsure of what is being suggested, REQUIRE DATA. DATA, DATA, DATA. Did I mention DATA?
5. STAY ENGAGED. TUNE INTO CURRENT PROGRESS, BUT PROJECT TO NEXT YEAR.
There is no idle time. There is no complacency. You have to keep moving. Purge your fears or stress, whoop up your success, and then. . . PUSH FORWARD. This is the mindset that drives growth and increased potential.The journey never stops. You have to keep moving and thinking ahead. The challenges get accomplished and evolve into new challenges. It’s like riding the wave, taking a deep breath, and getting ready for the next set.
6. BE HIGHLY INVOLVED & ENGAGED WITH THERAPISTS AND TEACHERS.
Stick it out and stay the course. Talk, talk, talk, until you get a free-flow of communication. I use the analogy of being in a marriage with zero ability for a divorce. Follow up and follow through. Know the grade level standards and find a way to get your child to that level. Challenge the TEAM to do it too. Meet regularly to evaluate progress of IEP. Don’t just have the annual IEP and leave it at that. Meet towards the end of the year and inventory of progress. Discuss what is and is not working and challenge the TEAM to do more.
Stay agile, stay innovative, and integrative in your thinking. Each child needs highly personal and individualized support to achieve. You can get them there.