Down Syndrome and Autism
A friend recently asked for advice on when to seek a dual diagnosis. First, when you notice subtle, unexpected, regressive changes, evaluate options immediately. New unforseen challenges in life rarely work themselves out to be better than the previous state. And follow up your observations by asking family, teachers, and others, direct questions about what you are noticing. There are non-clinical level evaluation survey’s that can help you ask the right questions. I once used the M-CHAT, is it perfect? Doubtful, but it is a place to start a conversation. We printed out a few copies and had several of the above fill it out. The decision to pursue a diagnosis was obvious for us. Start the conversation. Lost time in relevant therapy is lost or delayed development.
What specifically concerned me? Loss of language/communication, changes in eye contact, different interest in toys. A new way of playing with old toys. Previously he played with toys in a somewhat predictable fashion. Once the autism activated in his brain he started to play with the same toys in new ways, let’s say ‘creative’. Meaning, in ways I would have never thought to use a given toy. Waving, rubbing, throwing, scraping, arrangement, etc. What else? New sensitivities to anything, light, noise, emotion, food, texture, temperature, routine, clothes. Really the list is endless… Look for unexpected, unexplained change.
In my experience it is important to define sensitivity and its transient nature. We can be overly sensitive, or under sensitive to ANY stimulus (input) to our body through the 5 senses. People with autism routinely experience this. Look back through your foto-stream on your phone and study engagement through body language, eyes, noise reaction, body reaction to others in the area… Try to relive the moment of the foto and the emotions and sensations of that time.
Putting it all together today is very easy for me. I can go back in my foto-stream and pinpoint within a couple weeks when his autism surfaced. He made a huge turn inward and stopped almost all engagement with everyone and became extremely particular (sensitive) about how he would accept what he required from us such as food. This all began around the age of 3 or 4.
An autism evaluation should be a multi-hour process, and somewhat challenging. It should be the goal of the evaluators to accurately assess. As a parent it is your job to help guide the evaluation team to look at the areas of concern. If you would like a short e-book by PDF on preparing for an Autism/Down Syndrome diagnosis email us: firstname.lastname@example.org.
The Power of Showing Up: Part II
As a tax paying citizen your presence is allowed at any government meeting. You have the ability to provide insight at wide range of meetings. Health District, state congress, City Council, School Board, Water/Sewer District, Electric, Parks, HOA, Public University and the list goes on! Most of the time nobody shows up to these meetings, and a lot of our daily lives are controlled from these. Find the mailing lists for each, submit public comment electronically! It is your right and the various government bodies are required, at minimum, to acknowledge public comment. Share your story, it is powerful! It also might help families like yours who communicate less, or didn’t have the ability to speak. We all have our challenges, if you can speak up, please do!
A Shift in Power
Most of us have experienced large change during the current situation. School has been altered, jobs have relocated out of the office, or eliminated. Daily routines have been completely flipped around…
Many of us have had some misgivings about the public schools for some time. Maybe it was the schedule, the curriculum, specific programs pushed down from the state or federal legislature, teachers unions, funding, or other issues.
It is really challenging right now to look forward with confidence, the emails change story daily from the school district. Families are unable to realistically plan for the future with school in a perpetual limbo. The old adage vividly comes to mind “When one door closes another opens”. We are in a prime moment to regain control of our school districts (and maybe more). During this coming ‘blended’ school year (what is this, a mixed drink?) we will for the first time in decades have the ability to control what our children see, hear, and are encouraged to support. If we find it inappropriate we can immediately intervene and teach our children. Yes, it is hard and different. My child does much better in school on his IEP tasks. Perhaps this will set him back some, and I’m working to mitigate that damage. It also allows me to focus on only teaching him things that really matter for his life. As we see and experience life in our community we can respond to what we observe and bring our children’s developing worldview in a way we see fit, not what a specific teacher, upper administrator, or congress deems appropriate.
School and the workplace will remain drastically different for the foreseeable future. We can choose to fight this adjustment, or we can take charge, embrace it, and find a way to thrive. I choose to thrive and continue creating the best life for my family based on my values and ideals.
Covid-19 and Masks
We all come from different backgrounds. If you are struggling with masks on your child and need a template to talk with your district for an exemption let me know at email@example.com. We are actively working on protecting IDEA right, sensory needs and family stability for those we don’t think masks are the most effective solution for their children!
The Power of Showing Up
Thank you to the friend who reminded me that politics is intentionally murky. In the USA if your tax dollars fund a system or program, like a school board, you have a legal right to show up, comment, and advocate for any relevant issue! Most people do not show up, when you do, your presence is noticed.
It is amazing how few people show up, and how powerful it is when they do. A few years ago I was having some challenges with my sons school and the execution of his IEP. I was hours away from calling an attorney with a strong case. I showed up to the school board meeting, and quickly realized that I was the ONLY person in the room not on the district payroll in some capacity. A few minutes before the meeting started the Superintendent approached me realizing that I was there because I was extremely frustrated by something and he wanted to know before I became a wild card in the meeting.
Showing up started the largely successful path towards resolving that struggle. In that example the superintendent intervened and assisted. With COVID-19 some battles may be harder. But if we stick together and advocate for our children; and the challenges they face which make masking and distancing unrealistic we can help our districts appropriately accommodate our children so they have access to their education and continue working to living their best, most awesome life!
Starting something new
The hardest part is letting go! We work so hard to help our children be awesome. Following is a document which helps the church, school, or group activity help ask the right questions to assist your child in engaging at the highest level they can. Your honesty is the most important part! Check out the following, let me know what I missed, or how your family was helped.
I’m so excited to have the opportunity to meet your family and engage with your child in the best awesome way possible for them. I would love to learn a little about your child, what makes them happy, or frustrated, and what you do to work with and through those emotions. Below, I’m going to list a few ways I might see your child. What I’d love to see you from you is a few brief words at each line explaining what the strength or challenge is and how you work through it, or how you would like me to work through it.
As our joint relationship develops, and your child matures and learns we can adapt but at the moment this gives your child a great building block to start from and helps me to engage them in a way that supports you and your child’s growth. My goal is to allow you to relax knowing I understand the basics of your child and that I will be an extension of what you are already doing to help your child continue to develop and learn.
If there are not enough blanks in any given category please add more lines as required! Your active feedback is appreciated and encouraged. Please be as specific as necessary, if something does not currently relate please leave it blank. The ultimate goal is to provide the most supportive and successful environment for your child. Please ask if anything was missed.
Behavior (challenges. expectations of the child and the caregiver, consequences).
Medical needs (challenges. expectations of the child and the caregiver, consequences)
Stimulation (challenges. expectations of the child and the caregiver, consequences)
Emotional (challenges. expectations of the child and the caregiver, consequences)
Physical (challenges. expectations of the child and the caregiver, consequences)
Sensory (general)(challenges. expectations of the child and the caregiver, consequences)
Auditory (challenges. expectations of the child and the caregiver, consequences)
Oral (challenges. expectations of the child and the caregiver, consequences)
Motor (Body movement) (challenges. expectations of the child and the caregiver, consequences)
Visual (challenges. expectations of the child and the caregiver, consequences)
Thanks for visiting!
Welcome!! Thank you for visiting! We are excited for the upcoming developments of the brand. Our goal and focus is always to raise awareness and advocacy for people with special health issues. Please inquire if you are looking for specific messaging! We have previously worked with many specialized groups and are able to create disability specific content!