I have strabismus and have enjoyed the pleasure of having an eye turn for my entire life. But guess what? I am extremely confident and it hasn’t held me back, in fact I feel like it has given me a leg up in many ways. Why did I come through this experience with confidence and determination? I give credit to my amazing parents who handled my condition with zero drama and a whole lot of love. Let me share their secrets with you!
So what is the best way to talk to your child about their lazy eye or strabismus? Start by making sure your head is in a healthy place about their condition. Do you have limiting beliefs about strabismus that are causing you to show up in a way that isn’t really helping? After you have yourself sorted out, bring on the science and cut out the drama. Decide a course of treatment and then move on with the rest of life. When life throws hurdles, use our dialogue suggestions to help yourself and your child navigate difficult situations.
Your child will feed off of your emotions, opinions and overall attitude about their eye condition whether it’s amblyopia, strabismus, or a host of other issues. If you are scared or embarrassed, they will feel the same way. If you aren’t concerned, they won’t be either. Let’s take a look inside the brain of a strabismus parent and learn how to clean up those thoughts.
Look Inside Your Brain and Clean it Up
March 25, 1986, the perfect baby girl was born. (too far?) She rarely cried, loved listening to her mom play the piano and pleasantly sat while the chaos of her 3 older siblings happened around her.
After a few months, it became apparent that her eyes were severely crossed. After finding specialists, and learning that their perfect daughter (sorry, I can’t help myself) had strabismus, the discouragement and questioning settled in.
“This is so hard, I can’t put my baby through surgery!”
“Keeping the patch and glasses on her is so hard!”
“Will she have a normal life?”
“Will her eyes always look like this?”
“This is terrible, this will be so hard for her for her whole life.”
Then something terribly sad happened that changed everything for them. A neighbor, and good friend had a two year old diagnosed with a rare disease that would ultimately lead to blindness over the course of life.
Immediately, their feelings about strabismus changed in a few important ways.
- Their disappointment was replaced with gratitude.
- The drama was replaced with “This is fixable”
- Their thoughts went from “This is terrible and challenging” to “This is no big deal.”
It is amazing what a shift in thought patterns will change.
When a parent believes that their child’s challenge is terrible, they find evidence that it is. Perhaps they go on the strabismus support group on Facebook and find adults who claim that getting married or finding a job when “cursed” with strabismus is impossible. They could go down a rabbit hole of depressing facts and statistics and all the evidence would be there.
But a different parent, with the same child could choose, instead, to find evidence that their child’s vision problem is actually not a problem. And all the evidence would be there! Thousands born with strabismus are able to successfully treat it and live 1000% normal lives.
So How Do You Get To a Healthy Place About Your Child’s Diagnosis?
If you are struggling with negative thoughts about your child’s vision problems, consider this: Are you willing to consider the possibility that you are wrong? Here are a few thoughts that you could try on.
- Strabismus (Lazy Eye) is treatable. There are so many treatments available that professions fight over which one is the right one. How lucky are we! Many people are plagued with dysfunctions with no treatment. We’ve got this.
- This is figure-outable. I can easily do the research and I will know what to do to help my child.
- I would choose non-life threatening disease over life-threatening every time. We get to grow and learn, without worrying about life or death decisions.
- I am the perfect parent to help my child navigate this. Look at me, I’m doing my research right now. I’ve got this.
- This could potentially be hard for my child, and that is 100% okay. Going through hard things is what is going to shape them into the amazing adult they are destined to be. “Good timber does not grow with ease; the stronger the wind, the stronger the trees”
Practice those thoughts, and if those ones don’t ring true, I challenge you to set aside an hour of your life and do a little self coaching.
- Do a brain dump: write down all of your thoughts and feelings about what is happening. Let it all out, even if it’s insignificant, embarrassing or immature.
- Pick out the thought or feeling that is creating the biggest problem for you.
- Challenge that thought. Is it really true? Is it possible that someone in your exact situation could think about it in a different way? Are you willing to consider the possibility that you could be wrong?
- If you’re ready, pick a new thought and then practice thinking it.
If you would like more help with this I would love to schedule a zoom meeting with you and help coach you through it! Contact me at email@example.com.
Once you have your head in the right place, your child will completely feed off of you and conversations about their vision will be more effortless and natural. I promise, this doesn’t need to be a big deal!
Once my parents had their heads in the right place, they learned everything they needed to about strabismus, found me an amazing ophthalmologist and were 100% dedicated to getting me the treatment I needed, whether it was surgery, glasses or patching. The attitude was always, your eyes need the ____________(surgery, patch, glasses) to stay strong and work together. That was 35 years ago, a lot has changed since then! There are so many more options now, let’s take a look at them.
Do Your Research and Choose a Treatment Plan
I am not going to tell you what to do, because only you are equipped to make that decision for your specific circumstances, but I do want to share some options and possibilities with you. For a deeper dive into choosing treatment plans for strabismus, check out my post all about it over here. You can also take a free quiz here that has some brilliant ideas to consider, if I do say so myself.
Before choosing, I want you to empower yourself. You have a choice, you are not a victim. Optometrists and Doctors may feel free to tell you what you “should” or “should not” do. You may even feel that they are bullying you or using scare tactics. None of this forces you to do anything. You are in charge. Look at the facts, look at the science, not your emotions!
These options are mainly focused on children with strabismus, or amblyopia or both.
Choosing to do nothing about your child’s eye condition is absolutely an option. This is the case for thousands (maybe more) of people with strabismus or lazy eye (amblyopia) all over the world every single day and the world keeps on turning. You may decide to let your child make their own treatment decisions when they are an adult.
Some consequences to consider:
- Getting the visual system to the point where both eyes are working together consistently is easier for young brains that haven’t formed as many habits. The results also stick better when done earlier.
- Your child may completely loose vision in one eye
- Your child will probably develop an eye turn in an effort to avoid double vision
- Your child may be challenged by reading or writing if they can’t see or have double vision
- Your child may blame your choices for every problem in their entire adult life, but this is likely to happen either way so I wouldn’t allow it to sway your decision.
After considering the facts, you may choose to look for solutions, it’s totally up to you, but whatever way you choose to go, embrace it.
Find a Doctor
If your child has binocular vision problems, such as a severely weak eye, double vision or an eye turn. Find specialists that work with those types of eye conditions everyday. I promise, will you trust me? As someone who has been doing this for 35 years, this is the thing I wish I had done differently! I spent years going to a traditional optometrist and I spent years hearing that nothing can be done and that my eyes see very well.
I recommend going to an Optometrist who specializes in vision therapy, they can be found at covd.org. Even if your child doesn’t need therapy, they understand the condition in a different way and will help keep the long-term goal of binocular vision in the forefront of treatment suggestions.
Finding a pediatric ophthalmologist is also important. They specialize in strabismus surgery, but are also excellent with finding the perfect glasses to hopefully help your child learn to use both eyes. Surgery may be needed, and it is better if they are able to see the patient from the beginning to understand their case better.
Even though I am the biggest advocate of vision therapy ever, I definitely still go to an ophthalmologist once a year. I appreciate the different perspective and ideas that he has to offer.
Glasses should be considered the first line of defense. Many cases of lazy eye can be resolved with the correct prescription. Once the eyes are able to see clearly, the brain may just straighten them out and use them both seamlessly.
Patching is often used to help strengthen a weak eye. Patching alone isn’t going to make the eyes straight in most cases, but it will even out the acuity in the eyes making it easier for the brain to use them both. One downside of patching is that it teaches the eyes to work independently of each other instead of together. Ultimately, the goal is to have two strong eyes that work together.
Consider using a red lens patch to make it more effective. The red lens patch keeps both eyes engaged, but forces the weaker eye to be turned “on.” You can read more about it over here.
DIY Vision Therapy
Vision therapy is designed to teach both eyes to work together. It is expensive and can take months or even years for severe cases or old people like me.
Can you do your own therapy at home? This is a question I get asked quite a bit.
Yes, of course you can.
You can also do your own physical therapy, teach your children calculus, or give yourself a tattoo as well, but depending on your experience or expertise, it might not give you the results that you want.
I did my own vision therapy for about 8 months. I purchased a vision therapy textbook and studied it, scoured the internet for exercises, asked millions of questions and worked incredibly hard.
I discovered that my case was really severe and more complicated than I was equipped to handle alone. I didn’t have the right tools or knowledge and reading that textbook was like staring at a foreign language.
Others might have stereo vision, but simply want to strengthen it. Or maybe both eyes work together but one is weaker. They may have more success with different DIY activities to strengthen the eyes.
In office vision therapy is another option to consider. Working with a professional who understands the dysfunctions on a deep level and can tailor a plan for your child based on years of education and experience might be slightly more effective than you can be on your own, but maybe not. Booking a consultation is a great way to find out and see if vision therapy is a good option for your or your child.
In strabismus surgery, the muscles are cut and rearranged to make the eyes more straight. Perfect alignment is rarely possible to achieve because strabismus is such a complicated beast, but it can generally get the patient pretty close. The results are quick, but don’t usually last long. Most people have 2-3 surgeries as a young child and then maintenance surgeries every 10-15 years. Cosmetically, surgery is successful about 70% of the time. Surgery results in binocular vision (both eyes working together) much less often, my surgeon told me for adults it’s less then 2%!
Make Your Decision
Meet with the professionals, do your own research, discuss with someone who has been through it and then make your choice and don’t look back. You may end up using all of these options over the years and that’s okay too. There is no perfect recipe for success in fixing a lazy eye or strabismus, but don’t worry about second guessing your decisions because it will only slow you down.
Dialogue Ideas For Talking to Your Child About Their Eye Turn
No matter what treatment option you choose, there is one guarentee: YOU WILL MEET RESISTANCE. Don’t be surprised when your child doesn’t like glasses, patching, VT or surgery. They most likely won’t and they won’t be afraid to let you know. Resistance doesn’t mean that you made the wrong choice, it means that you are a human having a human experience.
Knowing your child and understanding them is my best tip for you. I can give ideas that might be the magic ticket for one child and a terrible idea for another. I LOVE the book, “The Child Whisperer” by Carrol Tuttle (Amazon link). She talks about four different personality types in kids and great ways to communicate and interact with them in meaningful ways. I use the principles from that book every single day with my four kids. I parent and talk to them in different ways because they are all so different.
Some of these scenarios might tempt you think, “this is hard” or “this is awkward” or I don’t know how to talk about this.” Consider changing your thoughts to, “this is figure out-able,” or “I know exactly how to help my child navigate this situation,” or “this is no big deal.” When you are coming from that place, your child will be much more receptive and they will feed off of you.
With that said, here are some suggestions to get you moving in the right direction when “challenging” topics come up.
When They are Scared of Getting Surgery
Child: “I am scared to have surgery.” “Will I have to get a shot?” “What if my eyes are glued shut forever” (that was one of my actual concerns as a 7 year old)
“It’s okay to feel scared. Your brain is trying to protect you from danger, it wants to keep you alive, you are lucky to have such an amazing brain. But sometimes our brains get a little over excited and they don’t know what’s best. We know that surgery is going to help you long term, even though short term it might hurt and be a little scary. Your doctor is brilliant and has done this surgery hundreds of times. Tell your brain, ‘I know you’re scared, and that’s okay, but this is going to make our eyes work better so we can see! We can do hard things!’ “
For a Big Time Worrier, going through the step-by-step process from the time you leave the driveway until the moment you return to it can also be super helpful! I just experienced this with my anxiety stricken 9 year old when she had to have her appendix removed. She was in full panic mode and couldn’t eat or sleep until I finally decided to call the nurse. We discussed and mapped out the minute by minute plan. After that, Eloise was able to calm down immensely.
For The Rest of Kids you can have them help you come up with ideas.
“What can we do to make this more fun?” (listening to favorite music, dying their hair, practical jokes, let them help here, they will have great ideas).
“What are you going to love about having surgery?” (cards, screen time, special visitors, treats, skipping school)
Talk about how surgery is going to help their eyes work together and be strong much stronger.
When Vision Therapy is Hard
Child: “Can I just be done with Vision Therapy, it isn’t helping and I hate it!” (direct quote from my 11 year old boy with convergence insufficiency)
Parent: “I love you too much to let you stop doing something that is going to help your eyes and brain for the rest of your life.” or “I know the exercises can seem repetitive, what can we do to make this more fun?” or if you’re a sarcastic parent like me, you might say, “You are lucky to have someone with a fully developed brain helping you make these decisions with long lasting consequences, you’re welcome.”
Some ideas to make the exercises more fun:
- Do the exercises with your child and let them “beat” you and teach you
- Play music in the background
- Do it first thing in the morning- trust me
- Use creativity to change the exercises so that they accomplish the same thing but give a break from the monotony.
- If they like competition, let it be a competition
- Other kids might enjoy making a detailed minute by minute plan and following it
- SMILE- You slapping a smile on your face changes everything.
Sometimes vision therapy is hard because of the side effects. Being aware of this as a parent is so important. Some of the side effects can be:
- brain fog
I rarely experience these from day to day with home exercises (I did in the beginning!), but I consistently feel almost all of these symptoms after my appointments. Don’t be surprised when your child struggles with following directions, staying focused or being a reasonable human being after VT appointments. Caffeine does seem to help. I give myself the same pep talk after each appointment:
“I know you don’t feel good, of course you don’t! You are teaching your brain an entire new way of understanding the world and it isn’t easy. Don’t try to do more than you are capable of and instead of getting snappy, give yourself a 20 minute breather to close your eyes and regroup.”
Talk openly with your child about this. It’s just science. Just like doing squats will make your booty sore, eye exercises make your brain sore. Awareness goes SO far!
When They Can’t See the 3D Movie
Child: “I don’t see anything popping out like everyone else, this isn’t fair”
Adult: “3D doesn’t work for everyone, is that something you’d like to learn to see? It’s totally possible!” or “Let’s go see the real 3D world outside or watch a regular movie where we don’t need glasses.” or my personal favorite, “And aren’t you lucky that’s life’s not fair?? If life were fair you would be blind and not be able to see anything at all.”
My kids do not like that last one, but I think I’m hilarious when I say it. It is easy to get sucked into the drama and victim mentality, but you are the parent and you don’t have to jump in that boat. Stick to the facts, love your child, and model positive thinking.
When Someone Makes Fun of Their Eye Turn
You’re never going to believe this, but step one is to skip the drama and stick to the facts.
As a person with strabismus, I have had my feelings hurt multiple times when there was zero ill intent. Of course there are people out there who are mean, just to be mean, but it is much more rare.
Usually, people are confused, curious or uncomfortable, not conniving bullies. As I’ve dived into life coaching and really taken a look, I’ve realized that my thoughts about those interactions were the source of all of my pain and sadness, not the innocent questions of people unfamiliar with strabismus.
Here is a dialogue scenario:
Child: “Someone made fun of my eyes at school today”
Adult: “Oh really, what happened?”
Child: “Well, I was playing at recess with a new kid and they looked at me and didn’t even know where I was looking and they just thought I was so dumb, it was so embarrassing!”
This is the part where you get down to the facts. What are the words that were actually said? What action was taken. Did someone ask “Where is your eye looking?” or “Why aren’t you looking at me?” or “Are you talking to me?” They maybe said nothing, but looked behind them trying to see where they were looking.
Getting to the facts is important because as you and your child take the drama out you create so much awareness.
Adult: “What, exactly, did they say to you?”
Child: “I think it was something like, why aren’t both of your eyes looking at me?”
Adult: “Oh, why do you think he asked that?”…
Helping your child understand and sort out what their own thoughts and inferences were verses what the other person actually said can be life changing, at least it was for me. Instead of being stuck in the victim mode where I believed that the world might actually be conspiring against me, I was able to use my brain power to consider more effective ways to handle the situation in a way that I could be proud of.
The fact is, when both eyes aren’t pointing in the same direction, it can be really confusing, at first. People’s brains are frantically trying to understand and figure out this unusual situation. Sometimes this results in somewhat awkward reactions. In my post over here, I go through three specific scenarios that can happen that could be interpreted as “rude” and some helpful thoughts and responses that have worked great for me. It might be helpful to have an open conversation with your child about those ideas to help them.
Having strabismus can be a challenge, but everyone gets to have challenges. How do you want to show up in the world? Who do you want to be?
If you believe that your child’s vision problems are terrible, insurmountable and too hard, they will believe the same thing. If you can let go of those thoughts and stick to the facts, your child will learn to be empowered by their condition instead of stuck in victim land.
I believe that having strabismus is a gift. I have met amazing people, learned so much and become the best version of myself through the struggle, how did I get so lucky?
The same is possible for you and your child, go get em’.
If you are ready to tackle the thoughts and situations that are holding you back, I would love to help you on your journey. Contact me at firstname.lastname@example.org to set up a call with me.
Be awesome. Be you.