This popped up yesterday from 3 years ago and it really struck me how our current system can underserve our children. Up to this point the school had not even been willing to assess EJ for the use of AAC (Augmentative and Alternative Communication) which can be anything other than standard methods like speaking. So for instance, letterboards, iPad apps and dedicated devices are all part of AAC. We were lucky…he showed us he could read by matching pictures to words just a few months before this video. This was the day when I realized he could break down words into letters and type them. Looking back it seems nuts that I doubted that for even a millisecond but we were told he was just gonna learn life skills and probably would not be able to read or write.
Also yesterday I was commenting with a mom whose son started spelling to communicate with her by using his magnetic alphabet letters on the fridge. It reminded me of EJ showing us glimpses like this (it also reminds me a bit of Stranger Things, hence my blog title). These children were all able to find a path to show they were in there. Some…many children may not have those opportunities or motor skills so the current system just labels them severe and low functioning. It is us that need to function better to find the different ways to help people communicate and access everything the world has to offer. We need to stop setting expectations so low and to presume the best in ALL. We must do better.
Here’s my response to the mom whose child was able to show he could communicate by using magnetic letters…
“First, can I tell you how my heart just leapt for joy at the fact he started communicating through spelling to you on a magnetic board! He found a way to show you his intelligence at such a young age! My son loves letters and would trace them on signs etc but many in the current system wrote this off to OCD. I met another boy whose mom was told to stop sending him to school with the alphabet flash cards he loved because “he won’t be learning to read or write so they are just a distraction” (SMH) I am by no means an expert because we were able to pull my son out and homeschool him when we saw how detrimental our school options were. But my thoughts would be for you to train or bring a trained IA who can help with the regulation piece. Remind the school that it’s the SENSORY REGULATION part that will need a carefully thought out plan and not the ACADEMIC SKILLS or INTELLIGENCE part. Try to impress on everyone who has the honor of working with him that respecting his intelligence and speaking to him in a calm manner will help to build his confidence in them. It’s so critical to build that relationship and environment of not only awareness and acceptance but EMBRACING and ENGAGING confidence. With homeschooling we were able to cut out the non helpful ones along the way but you’ll have to be vigilant since he’ll be at school. It’ll go a long way that he knows YOU know his capabilities. Reach out to this community often. Best people on the planet IMHO “
Thanks for reading! Next post will be more EJ writings. I just did this one after bedtime so I wasn’t able to get his help.
Some of you remember that just about 3 months ago we discovered EJ could read. Today we got to see him type independently for the first time! Thank you #wapadh and Darlene Hanson for making this wonderful communication workshop available. I can't wait to put together events with you at #werockthespectrumwhittier
Posted by Sabrina Lu on Saturday, February 7, 2015
Looking back on the last incredible 2 years from being considered “a non-verbal, low functioning autistic child” to the point where EJ is planning retreats for spellers/typers and being asked to put together a book. We truly hope that by sharing our story we help encourage others to follow their gut and if nothing else expose ALL people to the wonders of an engaging education. Even for those who believe there are kids who “can’t learn” (a completely false assumption) why not just read interesting material instead of preschool readers. If they aren’t learning anyway at least their aides will be less bored. And maybe just maybe they’ll start to engage and realize there are MUCH better ways to teach MUCH more interesting material. (steps off soap box)
OK, so EJ is now typing and spelling purposefully & fluently with pretty much any well-trained communication and regulation partner, but as this blog is going to jump back and forth thru the journey here is a clip from 2 years ago just after returning from our first camp with Soma Mukhopadhyay.
It’s cringe-worthy for me to see this because I have learned SOOOOO much and I see all the things I could be doing better, but I’m hoping that showing some of these early lessons will be helpful to others. We would love to help others to identify the best and most effective ways to teach. -Sabrina
WOW, OUR LESSONS LOOK VERY DIFFERENT NOW. I LOOK FORWARD TO HELPING WITH THIS (blog). I WAS ALWAYS LISTENING BUT NEEDED HELP TO GET IT OUT PROPERLY. IT HAS MADE MY LIFE MORE FULL. – EJ
Penguins and Christian's age
Here's a little lesson where he's a bit distracted and it's late but I'm so proud that he's trying and actually at 21:40 he does 11 for Christian's age…of course he also ends up saying he's 11 but then again I gave a choice of 2 & 9 so he may have added it and I also actually say, "pick 1" meaning one number but he picks the number 1…any progress with numbers is progress! #teamEJ #mommyis1 #helovesgoogle
Posted by Sabrina Lu on Monday, January 25, 2016
So we’re back to this blog with great news from the communication front. It’s an interesting perspective that we hope will be helpful to others at any stage of this journey. Today seemed like a great day to look back at the incredible journey of the last 2 years. From goals of the alphabet and the numbers 1-20 to being assessed at grade level in math (5th) and 7th grade level in language arts. I kept up with our journey on facebook so often I will link back to the videos there. My hope is to offer insights and updates on our current achievements while also looking back at the steps along the way. EJs hard work and dedication have been super inspiring and kept us all in awe. It was 2 years ago today we headed to Austin, TX and our true RPM journey began.
We had just started homeschooling and something in my gut said, “we gotta see Soma”. I was prepared to just end up wrestling with him on the floor while trying to absorb her wisdom and then lo and behold he just sat with her and went at it. At some point she breezily asked him what airline we flew to get there and he pointed to S-O-U-… after I picked up my jaw from the floor I thought, “now we have got some work to do” We’ve all learned so much these last 2 years (huge understatement). We still use TouchChat for basics but as a wise fellow Speller once said, “(with an AAC app) I could order a cheeseburger, now I can write the menu” ❤️
And we're off. #EJandMommyGoToAustin
Posted by Sabrina Lu on Monday, January 11, 2016
YMCA lessons use a learn–to-swim progression from water orientation to stroke development that meets the needs of swimmers at all levels. Participants learn water safety skills and stroke development in a fun and supportive environment that emphasizes character development and physical fitness. Lessons provided on a first-come, first-serve basis.
- Children ages 3-14 years old impacted by autism.
- 2:1 Swimmer to Instructor ratio
- 30 minute lessons once a week
Founded in 1969, the Whittier Area Parents’ Association for the Developmentally Handicapped (WAPADH) is a private, non-profit organization that supports individuals with a variety of lifelong disabilities including Cerebral Palsy, Autism, Down’s syndrome and related medical and/or behavioral disorders.
Our history of achievements is the result of strong community and family support and an organizational culture that continually seeks to remove barriers and change the limiting cultural stereotypes long associated with this population. WAPADH currently serves people in the Southeast Los Angeles, San Gabriel Valley and North Orange County areas.
Achieve Beyond Pediatric Therapy and Autism Services California provides pediatric therapy to help children reach their full potential. Education, therapy, and family support services are provided throughout the greater Los Angeles area. Located in Whittier, CA, we offer initial screenings, parent or school consultations, comprehensive evaluations and assessments.
Our professional and licensed staff is committed to serving special needs children with physical and developmental disabilities/delays or children, who might need some extra assistance. Services are provided in their home, school or community environments. We accept many major insurance providers including, but not limited to, Blue Cross/Blue Shield and Aetna. Private pay services are also available.
Pediatric Services Offered:
Progressive Resources delivers innovative programs for autism spectrum and developmental challenges. What makes us unique is including the whole family in a multi-modality treatment model. Our goal is to expand and enrich the lives of our clients through outstanding service.
Utilizing a strengths-based approach, PR’s methods are as varied as the needs and challenges each client presents – all drawn from “best practice” within multiple disciplines. Our COMMONSENSE™ framework provides a holistic approach to identify and treat complex challenges in children and adults.
The YMCA of Greater Whittier is an association of all people united in a common effort to put Judeo-Christian principles into daily practice and to enrich the quality of spiritual, mental, physical, and social life of their families, their community, and themselves.
Come and experience the YMCA difference, where you will find something for everyone in your family to enjoy. Discover the wide variety of programs and services that will help you renew your spirit, increase your energy, develop new friendships, build new skills, reconnect with your family and be involved in your community.
PCDA is a multi-disciplinary agency that provides a wide range of services to children with special needs, from birth to 21 years of age. All services at PCDA follow the DIRFloortime philosophy, which emphasizes social-emotional development and relationships.
Services include speech therapy, occupational therapy, physical therapy, feeding services, music therapy, adapted music lessons, counseling, sibling support, early intervention, SEDI-Floortime for 3-12 year olds, Teen Club 12-18 year olds, Young Adult Program 18-21 year old, Social Skills groups, Adoption Support, Traumatic Brain Injury, developmental screenings and assessments, and other specialized services. PCDA was established in 1997 and provides services over a wide geographic area, as well as their clinic in Pasadena. For more information call 626 793-7350 or email firstname.lastname@example.org.
For over a decade, Family Focus Resource Center (FFRC) has been providing parent-to-parent support, education and information to parents and caregivers of children with special needs and the professionals who serve them. They are one of 47 Family Resource Centers and one of 14 Family Empowerment Centers in California.
They are a sponsored program of California State University, Northridge. Some of their services include Parent to Parent Mentoring, Parent Education and Training, IEP/IFSP Services, Parent Support Groups (English & Spanish), Referral to Community Agencies, Lending Library (Books and DVDs), Community Outreach and Education, Monthly Newsletter, and Special Events. They offer a variety of workshops and serve families whose children are eligible for Early Start, Family Empowerment, Prevention Resource & Referral Services (PRRS) and Parent Links (a program to empower parents of Deaf and Hard of Hearing infants and toddlers). For more information call Theresa Quary, Coordinator of the FFRC office (CSUN location) at (818) 677-6854 or visit their website at http://familyfocusresourcecenter.org
Dr. Danis is a medical doctor trained as a general Pediatrician, with over 20 years of experience caring for children. She has additional specialty training and experience in Developmental and Behavioral Pediatrics, and has devoted the last fifteen years of her practice to working with children with a variety of special needs. She provides diagnostic evaluations, counseling and treatment for children and their families with a range of developmental and behavioral difficulties.
Some of the problems that Dr. Danis can help with include:
- Diagnosis, treatment planning, and medical treatment for autism spectrum disorders
- Diagnosis and treatment referrals for learning disabilities
- Diagnosis and medical treatment for Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder
- Diagnosis and treatment for tics and habit disorders
- Diagnosis and treatment planning for developmental delays, cerebral palsy, and mental retardation
- Diagnosis and treatment recommendations for a range of developmental and behavioral problems complicating pediatric chronic illness
- Diagnosis and treatment for regulatory disorders, including sleep problems, feeding problems, discipline issues, enuresis, and encopresis
Dr. Danis’ mission is to help children achieve their full potential physically, socially, emotionally, and intellectually. As a Developmental and Behavioral Pediatrician, Dr. Danis understands that a child’s unique development and consequent behavior happens mostly in the context of the family, yet school and community are important too. Dr. Danis works with the children in her practice, their families, schools and other resources in the community to produce the best possible future for each child in her practice.