Glasses Update!

It’s been many months now, and I wanted to give an update on Eli’s new Brainwear glasses from the Mind Eye Institute! First of all- these glasses have changed our lives and Eli’s trajectory in life. It is unbelievable and I want everyone to know about them! While there is no one solution to every problem, I would urge you to at least talk to Mind-Eye on the phone about your or your child’s struggles with sensory overload or anything vision-related. 

When I think of the differences between Eli today and Eli 9 months ago, it’s so amazing how far he’s come. He used to not even look at us and be in his own little world with his cars and now we have conversations and he tells me what he needs. In addition, generally, he would always be doing other therapies along with the glasses. People could always claim that it was the other therapies that made that difference. Well, since covid-19, we have been without other therapies, as we navigate the new normal, just like anyone else. And Eli has thrived! I credit these glasses with helping him to cope better and because he wasn’t so overwhelmed all the time, being able to take in more and learn all we were trying to teach him and help him with.

What has changed? Eli has never had a big all-out tantrum, ever since that first week of having the glasses- that is so huge for us! In fact, I can’t remember the last tantrum of any kind that he has had. He was able to go to school without any of the major problems he was having before (hitting, throwing, escaping and running away). Eli has gone to sleep without Melatonin for months! 

Besides all those things, which are MAJOR, it’s just so wonderful to have an actual conversation with my boy! I’d say the biggest difference is him being able to follow directions and tell us how he’s feeling and not get so upset over small things. He can just calm himself down and move on! He and his sister play imaginative play all day long, with only a few disputes. He is doing great with school and e-learning, making connections with his teachers and classmates and able to show his bright mind.

Is everything perfect? Of course not. :) We are still working on lengthening his attention span and helping him find the best ways to help himself if he needs a break or movement. Mind Eye helps us with brain exercises as well, to help his brain work better.

I am beyond happy with Mind Eye Institute! I’m so glad we found these glasses and the brilliant minds behind the science that helps so many people! Eli will be getting his third pair of glasses soon and we are excited by the new changes they will bring. I wish that everyone could experience these glasses!

Choosing therapies or helpful things

My main goal, after finding out my son was on the autism spectrum, has always been too help him to grow and be successful in life. I worry about him more than my extroverted daughter, who seems to be better than me at navigating social situations. :)

Many parents of kids with disabilities go through life, like we have, investigating, researching and discovering all the types of therapies available to help our children. There are many routes I haven’t gone down, and others I’ve felt offered extra hope. Why one thing over another? Maybe a trusted person recommended something. Sometimes I’ve read a book that has really resonated with me or I’ve connected with a therapist and trust them. Other times, I know something won’t work for our family- I have trouble keeping us all fed with relatively healthy meals as it is- any elaborate diets are just not a reasonable thing for our family. 

What is hard about all of this is that it feels like I have to do it all myself. Autism is something that has a lot of unknowns about it. There is no “cure”, but cutting-edge research being done all the time to help kids with autism make better sense of their world, see things differently, and grow and change as people. Maybe there are professionals out there that can give a run down on all the possible therapies available and recommend what might be good for my son, but from the number of things I’ve investigated, and knowing there are many things I haven’t investigated, I can’t imagine that any one person, Doctor, or clinic could keep up with it all. Most clinics will either stay with the tried and true Speech Therapy, OT and PT therapy model or they will specialize in one area- like behavior or nutrition. There are SO many places touting that they have “the answer,” to help your child, but I know by now that there is not just one thing that will help all the issues my child has. And while I want to help my child in any way possible, there is a limit to our time and money. We simply can’t do every therapy, even if we wanted to. 

Let’s look at it from the parents point of view- we are generally overwhelmed with dealing with problems our kids are having and so life is overwhelming. We have to work in order to afford the extra therapies, which even if covered by insurance, still require co-pays, deductibles or co-insurance. And many are not covered by insurance ever, while some are covered once you have a diagnosis. Getting a diagnosis itself is hard- when we wanted to get into a developmental pediatrician, there were only a handful available nearby and every one was booked 9 months out. I then can’t rely on a busy doctor to collaborate with and ask questions if I have to wait nearly a year between visits. I could investigate the top hospitals in the Chicago area, where I’m lucky to live, which has many experts. However, that would be an hour drive each way for any appointment, taking time from work or school. It’s a hard thing to commit to. These are the type of things I’ve struggled with over the years and what our time is spent on- therapies, reading, researching and investigating. In the end, the process I use to decide is a combination of expert’s advice (doctors, therapists, authors, research findings), polling other special needs parents and my own gut feelings.

In no particular order, here are some of the therapies we have investigated; this is not an exhaustive list, just some of the things that come to mind. In a future post, I’ll post about the ones we have felt have been most helpful. 

• Early intervention- speech, OT, developmental therapy
• Brushing/sensory protocol
• DIRFloortime
• Neurofeedback
• Vision therapy
• Sound therapy
• Music/Art therapy
• Massage therapy
• Therapy dogs/Reading to therapy dogs
• ABA 
• PECs/Visual communication systems
• Work systems
• LekoTek (toy lending library)
• Social Thinking (used in conjunction with speech therapy usually)
• Social Groups
• Son-Rise program
• Nurtured Heart Approach
• Collaborative & Problem Solving Approach by Ross Greene
• Anat Baniel method
• Feldenkrais method
• Nutritional supplements
• Many diets (gluten-free, casien-free, sugar-free, etc)
• Visual-auditory integration specialist
• Cold laser therapy
• Play therapy
• Therapeutic Horseback riding

Amazed

Today marks 10 days since we have gotten therapeutic glasses for Eli from The Mind-Eye Institute in Northbrook, IL. I was very excited about these glasses because I knew they were the next step in helping our little boy, 6 years old and on the autism spectrum. We have been dealing with my son’s struggles in school with behavior, and I thought these glasses could help. I was cautioned that it wouldn’t solve all the issues, but would help. I just wanted his world to be less confusing and thought that might help him to interact with his world and people better. As it turns out, these glasses have helped TREMENDOUSLY! :) Maybe I know my child so much that I can see the changes more than most people, but I’ve queried others and they’ve seen changes too! And in just 10 days- it gives me great hope that things will continue to improve and knowing his brain is growing and changing every minute of the day he wears these glasses really excites me! Here are some of the changes we have seen in this short time:

• Better eye contact (an outside person noticed that, too)
• Better at responding to questions
• Better interaction with others (today he told his sister he really wanted to play with her, when she is normally the one to pull him into playing)
• Extended play times with his sister and less fighting
• No incidents at school in one week!!!!!
• Participated in PE with no incidents for the first time at his new school, which he has been at for about a month!
• While he had a few issues towards the end of this week, he was able to calm and return independently to class. Even that is such progress!
• Easier with bedtime routine, him being able to follow the routine and us not having to repeat the steps to get him to do it (for example, we’ve asked him 20 times in one night to brush his teeth and he has done it with 1 time asking the last two nights)!
• Got dressed in PJs independently for the first time in about 6 months!
• Doesn’t need melatonin to fall asleep for the last 6 days!!! This had been a regular thing we needed to do for the last few months. 
• Got on the bus, for someone other than mom, for an entire week!
• No meltdowns for any reason!!
• Calms quicker when he is upset
• Seems easier to persuade to do things he doesn’t want to do
• Got on a big horse at horseback riding, which he was previously not willing to try!

I wanted to list all the things we’ve seen because it shows how amazing it really is. I never thought his sleep would be impacted (is his brain growing more and therefore tiring him out?). I hadn’t thought about how he would be less upset over things (has his overwhelm been reduced just enough that he can cope better with things that upset him?). I’m going to continue to monitor and see what things we notice. I’m in awe of these therapeutic glasses and keep telling everyone about them! :)

Mind-Eye Institute

One of the most fascinating things we have learned recently is that our little boy has a visual and auditory imbalance.  What does that mean?  Imagine if you have to go through life, seeing people like an out-of-sync YouTube video.  If what I am seeing doesn't match what I am hearing, how confusing would that be?  If you were in that situation, might you just stop looking at people and try to hear them instead, to see if it would be less confusing?  It makes me have such empathy for my child and how the things our special needs kids do are things they NEED to do, in order to cope in our world. 

We were fortunate to have been given the name Dr. Zelinksy, a brilliant doctor, who travels the world to help people with concussions, brain injuries and kids on the autism spectrum from the Mind-Eye Institute in Northbrook, IL.  Here we have learned about the latest fascinating neuroscience and how it is linked with the eyes and the ears.  Here are the most fascinating things I have learned about recently:

• Kids on the autism spectrum need help in getting both sides of their brain to fire, and such things as skipping and rhythmic patting or tapping can help.
• Your cornea is part of your brain.
• Special therapeutic glasses can help integrate the visual and auditory systems, affecting the cornea and literally CHANGE THE BRAIN.

We have been doing some exercises prescribed by Dr. Z, as well as using prism glasses twice a day to help our little boy's eyes be more balanced and I'm SO EXCITED that we get to try therapeutic glasses next, as soon as we get them in a few weeks.  I'm excited to help my little boy's world be less confusing to him and see what results from that and the changes his brain will make when his visual and auditory systems are more integrated!  

Listen to this radio interview Dr. Zelinsky had with Rudi Bakhtiar to understand it more and understand why we feel so blessed to live in the Chicagoland area with access to this type of expert! It's truly amazing and, I hope, life-changing.

What This Blog is About

My name is Becky and I’m the mom of a kid on the autism spectrum. I’m always reading and researching ways to help my little boy, who 6 years old. He is verbal and high-functioning and very intelligent; the sweetest little voice and the sweetest little kid. We’ve been on a journey, as all of us are on a journey in life, and it won’t stop anytime soon. :) There are times that I want to make a list of all the people, places, therapies, books, discussions, research, and websites that I’ve looked at over the past 4-5 years, when we started to realize our little boy was on the autism spectrum. So that is what this is- just a place for me to list all the resources I know about and all the things I’ve researched and all the things we have tried or are currently doing. Maybe this will help other parents of kids on the spectrum, maybe not, but I hope it will at least widen your knowledge of what is out there. Many thanks to all the moms, professionals, therapists, teachers, and family & friends who have helped us along our journey, picked us up, listened or were a shoulder to cry on when we needed it. We have such hope for what the future holds, because we see our little boy growing, learning, maturing and amazing us every day! :)