Ask Little Four Eyes: looking for others with a child with Brown syndrome

This community is amazing and has a wealth of experience between all of us.  So “Ask Little Four Eyes” is your chance to ask the full community.  If you have a children’s glasses or vision-related question, submit it here and I’ll post it to the blog as well as the facebook page and group.  I’ll collect the responses and update the post with those responses.  – Ann Z.

This is from Melanie:  My 2 year old son had been diagnosed with Brown Syndrome. I was wondering if you know anyone in the same boat/that has dealt with it before  you can put me in touch with?

There’s a post from 2009 asking the exact same thing, and there’s still an active comments section there from parents with children with Brown Syndrome.  I would love to hear from other parents, too, who are dealing with this!

Ask Little Four Eyes: surgery for

This community is amazing and has a wealth of experience between all of us.  So “Ask Little Four Eyes” is your chance to ask the full community.  If you have a children’s glasses or vision-related question, submit it here and I’ll post it to the blog as well as the facebook page and group.  I’ll collect the responses and update the post with those responses.  – Ann Z.

 

I posted here before when i first found out my daughter has accomodative esotropia and needed glasses , that was 3 months ago. She is now 23 months and 3 weeks old. It was totally devastating for me at first, i spent so many days crying about it,  but still im glad we found about it early,.. anyway at first she screamed and threw it away every time I tried to put them on for her (thank goodness I bought the flexible type or she would have broken several glasses), and with lots of patience (and showing her kids wearing glasses in tv shows and several youtube videos) she started wearing them much longer than before, she takes them off several times a day but they are on most of the time.

Anyway, i still feel sad that she has to wear them at her age  (some people commenting that she is sooo young to wear glasses makes me feel upset) but I keep focusing on the main goal and that is glasses will make her vision improve.. slowly but surely.

The thing that bothers me is that when she started wearing her glasses her eye is moving inwards more than before when she takes them off, and I’ve read that it’s normal but I still wonder if I could get her to make an operation before becoming 10 yrs old to adjust the esotropia and keep wearing the glasses till fully healed? Anyone did that before? I just don’t want her to be subjected to anyone commenting on her esotropia when she enters school or hurting her feelings.

I’ll start by saying that I understand the desire to protect your daughter from unkind comments.  From your question, it sounds like the times your daughter crosses her eyes is when her glasses are off.  In my understanding, with those cases, surgery is not recommended.  She crosses her eyes to focus through her farsightedness.  If she had muscle surgery, it would mean that her eyes are over corrected when she wears glasses (which she’ll need to correct her farsightedness).  In our experience, as Zoe got older, she’s been able to hold her eyes straight, even when her glasses are off.

Others who have experience with this, please chime in… 

 

Ask Little Four Eyes: how to keep lenses from fogging up

This community is amazing and has a wealth of experience between all of us.  So “Ask Little Four Eyes” is your chance to ask the full community.  If you have a children’s glasses or vision-related question, submit it here and I’ll post it to the blog as well as the facebook page and group.  I’ll collect the responses and update the post with those responses.  – Ann Z.

My 9 month old daughter has just started wearing her miraflex glasses but they keep fogging up! Do you have any suggestions to stop this from happening? Thank you!!

Guest post: Activities to distract, entertain, or encourage patching and new glasses wearers

Distraction can be key to successful introduction to glasses as well as patching.  A huge thanks to Shannon for putting together a fantastic list of activities that are a fun way to distract and entertain kids who need to wear glasses or patches. – Ann Z

Activities to distract, entertain, or encourage patching and new glasses wearers

Or, a list of fun things to do with any child. I have separated the list into age categories, however, most ages can do all of the activities. I have also included links and recipes to the activities. Younger children like to help around the house. They love to see how proud their parents are and be big helpers. They like to do a lot of those household chores us parents groan over. Kids also love to cook and garden. Including them in making their food also encourages reading, following instructions, and healthy eating. The best thing I have done is give my son a choice on patches. Even if the colors and shapes are the same, he gets to pick out which patch he will wear from the box. Giving him a choice in something he doesn’t typically enjoy allows him to feel power over his situation.

0-2 years

  • Folding towels. Kids this age truly love to help fold laundry. Hand towels, kitchen towels, and wash cloths tend to be a favorite. They also are excellent at putting them away.
  • Brushing the dog or cat. If you have a patient pup, as we do, kids love to help brush their dogs.
  • Water play. Simply filling a tub with water and giving them a few cups and spoons will keep them busy for some time.  Add soap bubbles rice, pasta, lentils, or sand, to the tub (with or without water) and you have another activity for another day.
  • Blowing bubbles.
  • This age loves to dip. Make a ranch dressing together and serve with easily chewed veggies.
  • Mega blocks are perfect. You can also stack old sour cream tubs, empty cereal boxes, old cups… This doesn’t have to cost money.
  • Volley ball with a balloon.
  • Make jell-o or pudding. Add fresh or canned fruit, as desired.

2-4 years

  • Finger painting. The cleanest way is to put the paint in a gallon sized (preferably freezer) and remove all of the air. Zip closed. Tape a piece of white paper to the table and tape the bag to the paper. You can reuse the baggies. This is also a great activity for mixing colors.  Instructions for mess-free fingerpainting.
  • Bean tubs can be any size. Plastic shoe box to under the bed tub are equally great. Add multiple beans to the tub. Add multiple colored buttons to encourage sorting and focusing on a specific activity. Look for all of the red, yellow, wood or blue buttons. The bigger tubs are great for children. Be sure to keep a blanket or sheet under the tub for easy clean up. You can also use rice, noodles or sand. Included are recipes for dyeing rice.
  • This age is prefect for making dips and growing their own vegetables. Our kids love to eat the cucumbers and carrots they have grown. I have changed the powdered ranch dressing recipe and use half low fat Greek yogurt and half low fat sour cream.
  • Kids love to build things. Duplo and wooden blocks are a favorite.
  • Build a castle out of an old box. It won’t last long, but it’s a fun activity that usually lasts a couple of days. Kids can also “paint” it with water and watch the color change.
  • Felt pizza, felt Elmo, and felt hamburgers are so much fun. My older child helped me cut them out.  Instructions here.
  • Make an obstacle course in the living room. Even better, make one that extends through other parts of the house. This is an excellent physical thing to do indoors.
  • Side walk chalk or side walk paint. The paint in super easy to make, but should be used when your child is wearing older clothes. Here is one recipe.
  • Make your own play dough. We made Frozen dough with blue food coloring, glitter, and peppermint essential oil. Be sure to dye the water before adding it to the flour. Here is a recipe.
  • Create your own glasses using this link. Cardstock would be best, but printer paper would be fun too. Your child can wear them over their frames while patching. This is an excellent hand and eye exercise.

4-6 years

  • Our son and I have grown tomatoes every year. We add new vegetables and spices every year. Sweet potatoes and strawberries are very easy! This is the age that you can begin to experiment with different dirts, plant foods, and composting. We learned that Epsom salts were great on tomatoes.
  • Puzzles. Both homemade and store bought are great. We have made these popsicle stick puzzles. Tape the back and use the flattest sticks only. Sticks with knots will not work well.
  • Cooking is fun. Granola or breakfast balls are okay to eat prior to baking and healthy. I tend to look at three or four recipes and make my own with what I have on hand. We are a peanut and milk free home, so I add wheat germ, Wow butter (fake peanut butter), and flax seeds. Other things to add: soy nuts, dried fruit, rice crispy cereal, and chocolate. The best batch has been almond joy. I added slivered almond, shredded coconut, and vegan dark chocolate. Packing the balls tightly or the granola tightly into the pan will help to keep it solid. Here is a recipe I have consulted.
  • Moon sand is so much fun to play with. Our son’s preschool teacher made an entire water table of it and the kids loved it! She included the children in making the sand. Here’s a recipe.
  • Legos are a winner for both boys and girls.
  • Scarf making sounds difficult, but here is an easier way. We went to the store and bought remnants on clearance and laid out on the living room floor to make them.  Instructions are here.
  • Soap clouds! We have done this before. I’ll add that you should add essential oils or colors to the soap, if you decide to do the activity at the end. The essential oils sort of competed with the scent of ivory, and no one won the battle. Also, I tend to avoid adding colors to our kids’ skin if possible.  Instructions are here.
  • Make a rag rug. A boy or girl can do this and it’s a great fine motor activity. They can help pick the colors at the fabric shop and, depending on age, can help cut the strips.  Instructions are here.
  • Floam can be bought or homemade. Here is the recipe.
  • Slime
  • Baggie ice cream. I’ve included a link with the recipe. I have learned not to add chocolate or anything else until the end, unless it is already frozen. Otherwise, it will slow the freeze time.
    baggieicecream

So, what activities have worked well for your kids?

Ask Little Four Eyes: strabismus after a fall?

This community is amazing and has a wealth of experience between all of us.  So “Ask Little Four Eyes” is your chance to ask the full community.  If you have a children’s glasses or vision-related question, submit it here and I’ll post it to the blog as well as the facebook page and group.  I’ll collect the responses and update the post with those responses.  – Ann Z.

My son was examined at his one year old appointment and they used the new eye scanner machine. They detected absolutely no abnormalities. In the last month I have started to notice one eye crossing in more and more. I took him back today and they did the scan again and found enough that they said we definitely need to go see an eyedoctor specifically relating to strabismus (but maybe more that they did not say). He’s now 17 months and falls (A LOT) and has definitely bumped his head multiple times (both front and back). Has anyone had strabismus or other eye issues show up in relation to falls or am I over thinking this? Thanks!

3,102

3,102.

That is the approximate number of patches used if you patch every day for 8 and a half years.  (Give or take a few….)

9,307.

That is the approximate number of hours spent wearing a patch for 3 or more hours a day for that time.

Can’t put a number on tears, or courage, or effort,  Those you just live through, and support and marvel.

At long last, after all these years, we have arrived.  We’ve arrived at today, August 3rd 2015.  Just about an hour or so ago our son, Nicky, put on what was (fingers crossed) his last patch ever.

Through it all…shifting vision and eye surgery, changing prescriptions and coke bottle lenses, through broken frames and the occasional stitches, and yes…many, many, many patches.  We’re proud to say…he did it.

Just a few hours from now he’ll take it off, and we believe, keep it off.  I haven’t been active here on L4E as often as I used to, but I did want to share the success.  Because without the words of wisdom, and encouragement, and support of people going through similar challenges, I think this time passed would have been much harder than it was. (Especially you Ann!! Glad I found you and this site.)

So for my part, thanks. And if you are ever feeling discouraged, or think you can’t get through.  Be sure to come here to L4E.  Cause you can, and you will.

So we’re off (methinks to a patch burning party later on today..) having come in not knowing and full of worry, and looking forward knowing that no effort is wasted effort. Because the the payoff is just that important.

Ask Little Four Eyes: question post-strabismus surgery

This community is amazing and has a wealth of experience between all of us.  So “Ask Little Four Eyes” is your chance to ask the full community.  If you have a children’s glasses or vision-related question, submit it here and I’ll post it to the blog as well as the facebook page and group.  I’ll collect the responses and update the post with those responses.  – Ann Z.

My son Max had surgery at the end of May for esotropia. We were told we would find out if the surgery worked in 3 months. Why such a long wait? If we see his eye still go in slightly does it mean it didn’t work?

I’ll note that this is a perfect question to ask your child’s eye care provider, as they’ll know the most about your child’s case.  But, if others would like to share stories of their child’s recovery and when they knew whether or not it was successful, that would be great.  In Zoe’s case, she had a follow-up appointment 8 weeks after her surgery, and she did have a prescription change.  Before her follow-up, her eyes started moving apart.  Her new prescription was lowered and her eyes were once again straight.

The Steve Harvey Show is looking for families who need glasses for their child

Stephanie from the Steve Harvey Show contacted me and asked me to pass this along.  They are looking for families whose child needs glasses (from the USA only):

Does your child need new glasses? Or, are they getting glasses for the first time? Is your child afraid to get their first pair of glasses? Are you tired of replacing your child’s glasses because they always break them? Is the cost of replacing these glasses becoming overwhelming? If your little one could use a new set of eye glasses, Steve is here to help you out! Please email Stephanie at: Stephanie.richey@steveharveytv.com or call at 312.836.4840.

All those crazy swirling emotions when you find out your child needs glasses

I’ve been meaning to write this post for a while now.  One of the most common things I hear from parents whose child has just gotten glasses is that they’re surprised by the intensity of their emotions, and often they feel bad for feeling bad (which doesn’t really help anyone feel better).  I know I felt similarly, I was filled with worry and was a bit upset, but more than anything felt guilty for feeling upset.  And on top of it all, a lot of parents feel like they must be the only ones who feel that way.  So just to put that to rest, here’s a sample of some posts I’ve seen on our facebook group…

Am I a bad parent that I’m sad to have learned my child needs glasses?…

Am I a bad parent that I’m sad to have learned my child needs glasses?…

Is it just me or was anyone else really upset when they were told their toddler needed glasses full time?…

I am really struggling with blaming myself for not realizing my child couldn’t see well before now…

I was so upset when we learned my child needed glasses, but then felt better the next day.  Now I’m back to feeling sad.  Is that normal?…

I feel so lost and overwhelmed…

I feel weird because I wasn’t upset or heart broken when my child was put in glasses…

girls with glasses (I'm looking at the camera's viewfinder in the mirror)
I was worried and upset when I first learned Zoe would need glasses, too.

So here’s what I want everyone to know: your feelings are your feelings – they aren’t good or bad or weird, they simply are.  If you’re anything like me, there are a whole lot of thoughts going through your head when you get news like this, and it is perfectly reasonable to feel some (or even all) of the following:

  • sadness that they don’t have perfect vision
  • concern about what that means for their future
  • worry about whether your child will wear their glasses
  • sadness that the glasses will change your child’s appearance
  • guilty for feeling bad when the problem is minor compared to other problems out there
  • worry that you might have done something to cause your child’s vision problems (it is almost certain that you did not do anything to cause your child’s problems, by the way)
  • fear that your child will be teased about their glasses or that people will only notice their glasses and not other things about them
  • confusion about all the different terms and concepts around vision issues and glasses
  • relief that their vision can likely be improved or anger if it can’t
  • excitement for their glasses to come in and for your child to start seeing better

It’s normal to feel sad or worried or upset, it’s also completely normal to feel relieved, excited, or even not much of anything at all.  But please let go of any guilt for how you are feeling — there will always be people who have it harder than you do, and perspective is a helpful thing, but this is not a competition for who has it the worst, and someone else going through a difficult time doesn’t automatically make what you’re facing easier.  You are still allowed to feel scared or upset.  Again, how you feel is how you feel.  The important thing is what you do next to get your child the help they need.  If your feelings are getting in the way of moving forward with glasses or other treatments, then acknowledge your feelings, share them if that would help (you can leave a comment here, or join the facebook group and post there if you’re looking for a safe place to share), and then take a deep breath and move forward.

Musings on the video of the baby getting glasses

There’s a video getting a lot of attention of a baby getting glasses for the first time.  In the off-chance you haven’t seen it (it’s got over 30,000,000 views), take a look.  It’s a wonderful and sweet video!    According to her parents in this article, the baby, Piper, has glasses due to extreme farsightedness.

Click the photo to see the video
Click the photo to see the video

I love videos like this that show a baby or young child getting glasses and then reacting to being able to see.  That video has been the subject of a whole lot of articles and news stories now, but I wanted to add some of my own thoughts.

What a great response to some of those questions we get so often about babies in glasses

Does a baby really even need glasses?  It’s not like they have to drive or read a black board.

Take a look at that smile as she discovers even more of the world around her.  So much of our learning is visual, and that includes all of the learning that happens early in life before a child can read.

How on earth can you keep glasses on a baby?

Well, it’s not so hard to keep their glasses on when the glasses help them see.  (Not to say that it’s always smooth sailing all the time.  Baby Piper’s parents mention in an interview with ABC News that she takes them off some times to chew on them still.  That’s something I know a lot of us who have been through this can totally relate to.)

Not all babies who need glasses have that same reaction

These videos are wonderful to watch, and I could watch them over and over again, but I worry that they can set up unrealistic expectations, as not every child responds the same way to their first time in glasses.  If your child doesn’t immediately love their glasses, know that you’re not alone!  Prescriptions can take time to get used to as does having new equipment sitting on your face.  If you’re having trouble introducing your child to glasses, take a look at some of our tips.

Vision issues in very young children are not all that rare.  Have your child’s vision checked!

What I really wish was emphasized in the stories about this video is how important it is to have your child’s vision checked.  Most people don’t realize how many kids should be in glasses based on prescribing guidelines.  One study of 533 children under the age of 2 found that 1-2% of the children met the prescribing guidelines for glasses (read the study here, table 7 has the percentages of children who should have glasses).

InfantSEE is a fantastic program in the US that provides free infant eye exams to babies 6-12 months old.  Also, while pediatricians and schools often do vision screenings throughout childhood, those screenings can sometimes miss vision problems.  If you ever suspect your child might have vision problems, please get them in to see an eye doctor who specializes in young children.

And finally, if you just want to watch a few more videos like the one above, check out our collection!

video featured image

Ask Little Four Eyes: doll with an eye patch

Our second edition of “Ask Little Four Eyes”.  This community is amazing and has a wealth of experience between all of us.  So “Ask Little Four Eyes” is your chance to ask the full community.  If you have a children’s glasses or vision-related question, submit it here and I’ll post it to the blog as well as the facebook page and group.  I’ll collect the responses and update the post with those responses.  – Ann Z.

This question comes from Andrea.  Her 2.5 year old daughter just started wearing a patch.  She’s looking for suggestions of where to find a doll with an eye patch.

In our case, Zoe decorated and cut out “patches” from construction paper and would tape them to various dolls and stuffed animals when she was patching.

Ok, so now it’s your turn to weigh in!  Leave a comment with your thoughts here, and I’ll be back in a few days with update with collected responses.

Ask Little Four Eyes: Robust frames for an 8 year old

I’ve decided to start a new feature: “Ask Little Four Eyes”.  If you have a children’s glasses or vision-related question, submit it here and I’ll post it to the blog as well as the facebook page and group.  I’ll collect the responses and update the post with those responses.  – Ann Z

Our first ever “Ask Little Four Eyes” question comes from Jim.  He’s looking for thoughts or recommendations on a robust glasses frame for a child.  His 8 year has a tendency to express anger destructively, most recently turning his glasses in to a four piece set.

broken frames

They’re working through behavior issues, including aggression, via Applied Behavior Analysis (ABA), and the behaviorist is already aware of the tendency to have anger and frustration come out destructively.  They’ve alerted the team to the latest round of destruction.  What Jim is looking for is recommendations for “life-proof” frames.

Ok, so now it’s your turn to weigh in!  I know that even the most robust frames can be broken by a determinedly destructive child, but I’d love to hear your recommendations – as would Jim. Leave a comment with your thoughts here, and I’ll be back in a few days with update with collected responses.

A 4 year old’s logic and glasses

Becca posted this in the Little Four Eyes facebook group, and it made me laugh, so I had to share (with her permission).  I love the logic of 4 year olds!  – Ann Z

IMG_4935Sophia (4 yrs old): Momma, can I take off my glasses?

Momma: No honey, we need to keep them on today.

Sophia: But Momma, I think my glasses don’t agree with my face. I told them it was okay to disagree, but they really want to have a time out and visit their home the case. They decided they are friends but don’t really want to play together. But they will try again tomorrow.

Becca followed up to let us know that her daughter did wear her glasses for the rest of the day, even if they were disagreeing with her face. 

What’s the craziest thing your child has said about their glasses?

 

Your stories: Lucky Duck

Huge thanks to Tarsha for sharing this lovely letter that she wrote to her youngest son.  He has albinism, is legally blind with esotropia and nystagmus. As she said, “Sometimes I think it’s harder on us than them.” – Ann Z

My Dear Sweet JoJo (or Joseph as you prefer these days),

Our days are swirling by in a whirlwind of chuggington, chicken nuggets, playdates with Cub Cadets, and afternoons of Uno and Candyland. I find myself longing to spend every possible moment with you and your brother. You started coming into our room at night to sleep in our bed. We sent you back to your room at first. Then it dawned on me, the days of your cheek hugs and tight, around the neck squeezes are limited. It breaks my heart to even think of the day when I can no longer cuddle you nose to nose, forehead to forehead, your chubby little hands holding mine. So right now, you sleep in our bed most nights, sleepovers I will cherish for the rest of my life.

jojoToday, a picture of you at the circus of the senses was on the cover of the metro section of The Boston Globe. Our friends and family have been calling and sending messages all day long. Our adoring neighbors, Pat and Jim, brought the paper over so you could have your own copy.

I need you to understand how magical you are. From the moment you arrived, you have spread joy everywhere you go. When we make trips to Market Basket, the post office, to get gas, or even to a doctor’s appointment, you greet everyone we meet with your wonderful smile and a pleasant question. “Hello, how are you? What’s your name? ” For a very long time when you were three, you engaged everyone with, “what kind of car do you drive?” What is so magical about this you ask? The answer is your interaction with others, your jolly personality, your raspy little voice, your gigantic cheeks and most scrumptious dimple ever, your round glasses, the way you use your hands when you talk or casually cross your legs, your inquisitive way of questioning everyone and everything.

All of you, Joseph, this is the magic.

You stop people in their tracks as you confidently take on everything this world has to offer. You do not shy away from experiences. Can’t see? So what. Riddled with anxiety? So what! Headache from the sun? So what. Sensory dysfunction screwing with you? So what! You have this grit, this determination to learn, to do things on your own. We are all in awe of you.

You’re interested in things the doctors said you wouldn’t be able to do. You don’t know what the doctors said. We never told you. Sports, you love sports, basketball, soccer, hockey, gymnastics, all of it. I know it is scary for you at times. I know because I am your Mom, I know because of the way you chew your nails, and because of the way you worry. Scary or not, you forge ahead, unwilling to let anything get in your way.

Joseph, you amaze me. I couldn’t be more proud of your spirit. You started reading and writing when you were just over two years old. It isn’t easy for you. You use glasses, magnifiers, ipads, and anything that will help you. When you get stuck you will not move on until you figure it out. You are stubborn! Thank God!

At first when Daddy and I saw your picture with the cane we felt sad, thinking, “Poor Joe”. Then you came home, bursting with excitement, laughter, and information about your day in the city, on the subway, and meeting all the animals. YOU did not feel sad about the cane. Not one bit.

In those moments I learned so much from you. Life is not about the struggles or stresses we encounter, but rather about the way people use them as either a crutch or as motivation. It was then that I realized that you do not let anything get in your way, you choose to be motivated. You choose to be happy. It was then that I sat down to write you this letter. So that, when you are older you can read about your magical four year old self.

You say things like, “I’m a lucky duck!” and you mean it. Joseph, I am the lucky duck, because I get to be your Mommy!

Great Glasses Play Day 2015 coming up soon!

I apologize for not posting much recently.  There’s been news recently in understanding some of the underlying causes of the increase in myopia, and in the treatment of amblyopia that I would love to write about some time soon.  But I’ve been focused — pun intended — on planning for the 2015 Great Glasses Play Day, which is coming up in just a week (ack!!!).

playday

This year, we have more locations than ever and talking with the organizers is super exciting.  Take a look at our map of locations and see if there’s something near you.  We would love to have you join us – there are a lot of fun games and crafts and activities are planned, plus it’s a great chance to meet other families who are also dealing with vision issues and trade stories and tips.  I’ll be at the Twin Cities, MN event.   All events are free and open to the public.

online

For those that aren’t near an event, we have a lot of other ways for you to participate.  We’ve posted fun activities and crafts for you to do with your child at home, and ideas of ways to spread the word about the importance of early detection and treatment of vision issues in kids.

about

Want more information?  You can find out more on the Great Glasses Play Day website, or you can follow the Great Glasses Play Day on facebook.

Let’s celebrate!!!