Friday, March 30, 2012

Up We Grow

Two new developments in the little life of Liam ….

Lately learning to walk (at 9 ½ months yeah!!!) is not the only new thing Liam has learned to do. Though walking at such an early age was the biggest, there are a few smaller things that I have such joy in watching him do. First off, I have always wanted to teach my children sign language. I have known sign language since the second grade when my best friend Bree taught me so that I could communicate with my new friend Amanda who was deaf. Over time, I became very fluent in sign language and took extra classes in college just to get a GPA boost with the easy A. I grew up wanting to work with deaf children at the school for the deaf in Little Rock (little did I know I would have a son who landed me right across the street at the school for the blind instead…love how God works!), but I first I wanted to teach sign language to my own children. After finding out about Liam’s eye condition I thought this might prove to be much more difficult a task than I had hoped, but this week he amazed us all when, after weeks of me signing “more” to him when I gave him bites of food, he finally signed it back! Since the first time he signed it and we all started applauding for him, he has not stopped yet! The best part is that he only uses it in the correct context. If his bottle is empty, if I stop giving him bites of banana, if he gives you kisses and you pull away too soon, all these things and several others will get the same reaction out of him… “more” he signs silently. Then he will smack his little hands together clapping proudly for himself. Next sign, the word “please”, and if I can I will be sure to snap a picture of my little show off.
The second major development we have started to notice recently is that Liam is obsessed with lights. We do not know where this comes from since logically with OA the light should/does hurt his eyes to a degree but apparently he is comfortable with indoor lights enough to always want to be lifted up to touch them briefly. His sitter Rosa noticed a few weeks ago that he was often staring in amazement or just curiosity at the lights and fans on the ceilings in her home so she started informing him, in Spanish, of what these objects where with a simple “la luz Papi”, and she would point to the light he was staring at. Eventually, as she carried him around the house, he would point to the lights himself and she would respond with “la luz” and he would drop his hand. This week Liam has started to do this himself when we ask him “donde la luz Liam?” (where is the light?) he will tilt his head back and scan until he finds the closest light and point a waving finger in it’s direction. If more than one light is in the room he will continue pointing to each one as you ask him “donde la luz Liam,” and we can even repeat the Spanish with the English “where is the light Liam?”, and he will still point to the lights for us. It’s such a small gesture but we love it all the same. We keep trying to get him to point to Mama, to Dada, to Gigi with the same question in English and Spanish and he is working hard at this too. Both these new developments have come so fast and I’m sure the next ones will come faster and faster as he continues to grow. They are constant reminders that my little sweet baby is not so much a baby anymore and that soon his one year birthday that has been slowly creeping up on us will be here making him officially a toddler. Ready or not here it comes!!

Thursday, March 29, 2012

My "Not So Much A Birthmark" Birthmark

When I was a little girl I remember my parents always explaining the white patch that covers my right palm and wrist as my “birthmark”, unique to only me, they said there was none just like it. They were right at least about half of that statement. To this day, I have never seen one quite like it, snow white with cloud-like edges it shines even brighter when I tan in the summer and tends to blend in to my pale skin in the winter months. It never tans and never changes shape or size. The part they were wrong about was the term they used…. “birthmark”. Yes, they were correct it is a mark and I was born with it, and I am sure the doctors told them, upon their questioning of it, that it was “just a birthmark and nothing more” but they too were very, very wrong. Dozens of people have commented on it throughout the years with things such as “did you burn your arm?” and I would answer “no it’s just a birthmark” (not that anyone’s burn marks ever look like this I don’t know why so many people assumed that), and to my knowledge I was not lying just repeating what I was told. If it had not been for Liam I would have never even questioned my “birthmark”. Then one day last week I made a shocking discovery.

While researching my son’s Ocular Albinism condition, I found a site which explained that even though the condition is inherited from the mother, the mother will not show any signs or symptoms to know that she is a carrier of the condition except to a trained ophthalmologist who would notice the mottling on the back of her eyes if any is present. Then it explained the exception….. Apparently sometimes the mother will show outward signs of mottling on her skin though very rare. (Mottling, they say, is any discoloration or lack of pigment/coloring in the skin.) The site specifically states that a mother who is an OA carrier can rarely have a patch or several patches of skin that appear completely “snow white” from the lack of pigment. Well now that explains it!! My so called “birthmark” was not a birthmark at all; it was and is a sign that I am an OA carrier. I may or may not have mottling present on the back of my eyes but I do have a clear indicator of the gene right in front of me every day.

If I had known that from the start I don’t think Liam’s diagnosis would have shocked us near as much as it did, but all the same I am sure growing up the best way I could have possibly explained it even had I know would have been “oh it’s just my birthmark” and I would have left it at that. Now to me it is no longer my birthmark, though it is a mark and I was born with it, it is now a tie, a tie that binds me and Liam and makes us both unique together. We carry the same mark, me on my wrist and he on his eyes, and though I won’t be telling him that it is just a birthmark he has on his eyes, at least I can tell him he is not alone. He, in one way, one very unique way, is just like his Mommie.

Wednesday, March 28, 2012

The Fairy God-Mother Syndrome

 Have you ever heard of the “Fairy God-Mother Syndrome”? Apparently it is a syndrome blind children can form when they begin to think that their toys magically appear and disappear without their having any control over this; so they do not try to get them for themselves but instead wait to have them handed to them and when they are removed they are just “gone”. Studies show that instead of taking a toy away from them or placing it in their hands you should rattle or bang the toy a few inches away from them allowing them to focus in on where the object is at using their hearing and feel for it to find it for themselves.  Doing this when giving them toys and taking them away allows them to attain them for themselves when a toy falls out of reach or when they want to find a toy to play with.  This encourages them that they have control over getting their toy themselves instead of it “magically appearing or disappearing” when you remove it.  They also suggest that if you are going to give them the toys instead of sitting them down and allowing them to feel around for them, to make a certain noise when you are bringing the toy up and placing it in their hand so that each time they hear the noise they know a toy is coming.  Some children have been known to mimic the noise to tell the parent that they want the toy.  Since Liam is not completely blind and he is able to see his toys pretty well when his glasses are on we do not have to make noises when giving them to him. We do however have to watch when we give him things from his right side since he has a slight blind spot/zone on that side he tends to lose things in that vision field. We also make sure we surround his area with different textured toys so that he can find and attain for himself the one he wants without us giving them directly to him. If a toy falls out of his sight and we can see that he is searching for it we try to use the toy to make noise so that he will follow the noise to the toy himself rather than giving it right back to him.  This has definitely improved Liam’s self-help skills and I thought this was good advice for parents of any time of visually impaired or non-visually impaired child to know so I thought I’d share.

Tuesday, March 27, 2012

Sensory Overload

Recently, I read an article on raising a blind child that talked about the sensory issues that blind children often have in various degrees.  I read this article just days after we were faced with the fact that the nursery at our church could no longer handle our “special” child.  Each Sunday, like clock work, 10-20 minutes after we have dropped Liam off in the nursery someone beeps us or finds us to let us know our child is crying inconsolably.  The issue was not with the amount of light in the room, but the amount of noise.  Children with visual disturbances are on high alert with their other senses, their hearing being the main way they can tell where mom, dad, or a familiar person is located and also how they navigate a room to find people and things that they want.  If the noise level is to chaotic for them to discern the individual sounds they begin to get overwhelmed and panic causing them to cry or react negatively in some way.  For Liam, he would be fine in our church nursery until there were five or so kids crying or squawking all at once, and then he would begin to cry until someone he recognized came to his aid.  As a mom, you do not want to sit and let your child cry the entire hour and a half that you are only two rooms away, so each week Brian and I take turns walking around the church with him while the other sits in on the service.  Some Sundays we are able to alternate with grandparents keeping him so that we can both go on to service but, needless to say, our Sundays are very hectic. When I found the article, which is from a parent of a child who is completely blind, I had to share it with our vision therapist.  It stated that children develop their other senses to compensate for the lack of vision and do not handle sensory overload very well.  He gave a few examples that matched Liam to a tee! I had not noticed until reading the article that Liam did not like for us to hold his hands for more than just a few seconds at a time.  (He typically shakes them loose from your grasp immediately unless he is sleepy.) This is because for blind children their hands are their eyes (just like their ears).  They spend a lot of time listening and feeling things out to explore their surroundings, which they cannot do if you are holding their hands or the room is very loud. It was like a light bulb came on! So we mentioned these things to Liam’s vision therapist at Pediatrics Plus to see if she could help with these things and she feels confident that she can do some sensory exercises with him to teach him to relax in these type situations and handle them better.  She said we may have to increase his time in therapy to more often than once a month but that is definitely a sacrifice we are willing to make.  At his first therapy session she said we will work on helping him find his body in proportion to where he is at in space and time (yes I know it sounded hokey to me too at first) so that he has better balance and grace in his movements. At first I was not sure how she would do any of this until I researched it on my own and it turns out that the reason blind children sometimes stomp or knock things over is because they do not know the distance to their feet or of their arms so they appear clumsy but they are truly not.  If we can teach Liam to be aware of where he is proportionally then hopefully he will not be as bad at depth perception or balance as they say he will. (If you are having trouble understanding this then try imagining the game where you put your forehead on a baseball bat and spin around then try walking afterwards… the world would be unsteady and feel unbalanced.  The idea behind the therapy is to teach Liam not to be either of these things by showing him how to time when his feet will hit the ground and how far it is from him to the cup sitting on the table, etc.) Some studies even suggest to teach them about space, such as from their head to the ceiling so they do not feel like they have to duck when entering a room, to hold them up above your head and let them touch the ceiling or doorframes so they can learn how far up it is, not how far up it looks to them. (Remember his depth perception makes him unable to tell how close or how far away/up something is such as stairs, steps, doorways, fans, etc.) Hopefully with lots of research between us and Liam’s vision therapist we will be able to find more helpful sensory activities to do with him to help with his tolerance of sensory overload. I am very anxious to see what ideas she will have for us from her research at his next session! I hope by the time Liam turns 1 (just a two months away now!) that we will be able to make it through an entire church service without interruption! We shall see!

Sunday, March 25, 2012

Window Tinting for OA

Our family currently resides in the state of Arkansas which, like most states, has a tinting law for vehicles. Each state has different limits for different types of vehicles on how much light has to be allowed into the vehicle to make it legally tinted. Some are enforced more strongly than others and some not at all, but the grid HERE will give you an idea of each states tinting degree allowed. In Arkansas, for a car, windows must allow more than 25% of light to come in the front windows, with the back window allowing 10% of light in. For an SUV in Arkansas, the front windows are at 25% with the back passenger windows and rear window at 10%. If you are ever in our car or have a child with Ocular Albinism you will notice quickly they do not react well to the sun in their eyes. It is very painful for people with OA to have constant light in their eyes and for children who do not know to turn away and cannot change positions in their car seats this can mean for very hectic and loud car rides. Since Liam has grown and can now pull blanket coverings off the top of his car seat, we have had a hard time keeping enough shades in the car to shield his sensitive eyes. After much research we found out that in Arkansas there is an exception to the tinting law that specifically names albinism as one of the few exceptions.
27-37-306 Arkansas Tint Law
**“(e) (1) – a motorist shall be exempt from this section if the motorist is diagnosed by a physician as having a disease or disorder, including, but not limited to, albinism or lupus, for which the physician determines it is in the best interest of the motorist to be exempt from the requirements of this section. The motorist shall carry in his or her motor vehicle a physician’s certification. **

When we got in touch with the state police department they gave us a link on where to find a copy of this law and its exception so that we could keep copies of it in our vehicles with a certification letter from Liam’s pediatrician. We called around to different window tinting companies to find out what they would require the letters state and then had our pediatrician type up a signed certification for us. It simply states that due to Liam’s diagnosis of Ocular Albinism, he requires tinting beyond the legal limits of the state of Arkansas and to please contact them with any concerns or questions. (Several tinting services were very specific about “of the state of Arkansas” if they were going to do the tinting so if you require this service make sure to call the one you plan to use before hand.) We keep all the documents in an envelope in our cars so that if we get pulled over due to our dark tint we will be able to show the police officer and be on our way. We are scheduled to have our vehicles tinted in three weeks so we have yet to have to put this to the test but I am sure we will have to at some point. In some states there are special stickers that you have to put on the back of your vehicle to let the officers know that the vehicle requires/is allowed the illegal tinting so that they do not waste time in pulling you over at all but unfortunately Arkansas is not one of them. We have recently thought about organizing a petition to have a sticker for vehicles that qualify under this exception in our state so if you have any feedback on this we would love to hear it!

Tuesday, March 20, 2012

Mirror Mirror On The Wall

If you read up on your growth milestones for infants like I do, most sites will rank “Begins to identify self in a mirror's reflection” as a milestone that should be reached by the end of nine months of age. This is a start for the child to eventually become self aware which usually happens around 18 months old. As the child ages they say you can test to see if the child is self-aware (knows themselves to be a separate person with their own personality separate from mom and dads) by drawing or sticking something on the child’s head or face and then showing it to them in the mirror. If the child reacts by touching the doodle or sticker on themselves and not the mirror image they are considered self-aware. For children with any form of vision loss they say this may come a little late but I was so proud of Liam when, right on track at 9½ months, he started patting and babbling to his reflection in the mirror. It is a great indicator that we are on the right track and that he is not falling behind in that area. By the time he is 18 months old I am sure he will be reacting to doodles on his forehead like any other sighted child. Now if I could just get him out from in front of my make-up mirror in the mornings! Here are some pics from my mirror sorry they look so blurry!

What Does An Infant See?

Here is a small glimpse at what a healthy new born baby can see when he looks at the world.  (Borrowed it from the clinic I work at and yes I underlined healthy because if the child has any conditions like Liam’s or other medical issues they will see less or worse than this card can illustrate.) Scary to see how little they actually see when we first meet them, no wonder they rely so much on familiar sounds like our voices and things!

Thursday, March 15, 2012

If You Can't Find It, Make It!

Since I was a little girl I have always known that I wanted to be a writer. I had dreams of growing up to write children’s books but was unsure of how children learned best or what they would want to read about.  I never thought “what happens if the child has trouble even seeing the book?”  I sat in Liam’s room one night after he was diagnosed, going through our basket of books people had given him, slowly realizing that some of these small print books filled with chaotic images and busy patterns were never going to help him learn to enjoy reading. I flew to my computer and began a week long search for books that would be suitable for my son’s needs.  I quickly found that the hardest books to find are the ones for visually impaired children, not for BLIND children, but visually impaired.  Liam does not need Braille books; he just needs bigger, bolder, and brighter, high contrast books. The only problem is that few people make these books.  There are several authors, such as Eric Carle whose books I have mentioned before, that focus more towards large brightly colored books with high contrast images but their font is not always large also. It is not enough to just see the images on a page I want Liam to be able to read it also.  Yes there are many devices that increase the size of the font if you can get your little one to look through the magnifying screen on the device but what happens when you cannot? I have slowly developed a passion (more of a mission) for making books for the visually impaired and I am starting with some for Liam.  It started out as making flash cards for teaching him his alphabet and numbers one day and then grew from there. One day I hope to be able to work with a publishing company and illustrator to create books specially made for visually impaired children but for now I am content just crafting them for my little one.  I may even send some out to some friends with visually impaired kids older than Liam to get some feedback. Once I finish getting a few together for Liam I’ll post some photos.   Fingers crossed he may love to read one day just like his Mommie!

Wednesday, March 14, 2012

New and Improved Nursery Rhymes

I thought just for fun I would share this, laugh if you want but plenty of moms have told me they do the exact same thing with their kids. If you have ever had to sing a lullaby over and over again because your child cannot or will not calm down/go to sleep without that one particular song being sung on repeat you will understand what I mean when I say that I GET BORED WITH REPETITIVE NURSERY RHYMES!! I have never been one for nursery rhymes in the first place, but I get so bored singing “Itsy Bitsy Spider” and “Twinkle Twinkle Little Star” over and over again. (Even though I know I will keep doing it until I am blue in the face because he is my little man.) This month Liam is going through a phase where he refuses to fall asleep in the car unless I start singing one of these two songs to him but if I stop, even for a minute, he will start crying until I start up again until he is finally asleep. So I have had to entertain myself by mixing it up a little with my own versions of Twinkle Twinkle Little Star and occasionally rapping the Itsy Bitsy Spider. (Yeah that’s right I said rapping and no there will be no demonstrations.) So I thought for fun I would share my version of them both. Enjoy!

Twinkle Twinkle Little Mars
How I wonder how far you are,
Up above the earth so high
Like a lightening bug in the sky,
Twinkle Twinkle Little Mars
How far to Jupiter from where you are?

Itsy Bitsy Spider went to the farmer’s house
Down came the snow and trapped her like a mouse
Out came the sun and dried up all the snow and
The Itsy Bitsy Spider had lots of places to go.

Tuesday, March 6, 2012

Arkansas School for the Blind Early Intervention Program

Meeting #1
This past week we had our first assessment with Arkansas School for the Blind’s Early Intervention program. First off, let me say how amazing this program truly is. Since the school for the blind does not start until the child hits school age (between 4 and 5 yrs old) they have developed the Early Intervention Program for children birth to age 3 to follow the child until they become of school age. At first I thought this program only applied to completely blind children or that you would be expected to go to their school instead of public or private schools in the future but that is not the case. Our Early Intervention Specialist explained that many students choose to go to public or private schools and some do fine that way, if they start having problems then they may transfer to their school if they wish. (If the public school is unwilling to assist the child in the best ways or if the child starts doing poorly they will reevaluate.) She explained that they encourage them to go on to public schools if they feel they can and if the parent wishes they will even come to the child’s classroom to meet with the principal and the child’s teachers to inform them how best to help your child. (It is up to the teacher how much she wants to change in her classroom. The Early Interventionist can urge them to change certain things but it is not mandatory. Some teachers will go the extra mile for their students and some will not.) Also, we were informed that only around 30% of their students are fully blind and need Braille the rest are just visually impaired like Liam and need varying degrees of help. Our Early Intervention Specialist was Pam Raspberry (who we had heard such great things about before hand) who will be doing Liam’s sessions once a month from now until he is three years old. The program gives you the option of having the sessions done at your home or the home of the sitter/daycare so we chose to have Ms. Pam come to our house once a month. I had feared Liam would have some “stranger anxiety” issues like he has in the past with strangers trying to hold him before giving him time to adjust to them but he instantly reached for her and allowed her to hold and play with him. The session lasted around an hour and as Ms Pam evaluated him she had us fill out the Oregon Project Assessment to track his developmental progress. Each time she returns we will go over the same questions asking about tasks he can or cannot do to track his improvement. She had Liam play with several lighted toys and our favorite, the light box. Typically these are used for tracing in art classes but they work great to show high contrast so that Liam’s eyes can spot objects blocking the light and grab hold of them. Imagine the light on the wall of the doctors office that he uses to read an x-ray….there is a foggy white glass covering the bright lights so it does not hurt your eyes and it lights up the dark x-ray. Ms. Pam used this light box with colored slides just like you would a projector. Liam could see the objects better in front of the light because of the contrast. It really was amazing. She had slides that looked like zip-lock bags filled with colored gel and toy fish inside that looked like the ocean so he chased after the fish and smashed on the gel to move the waves around. Ms. Pam is bringing us one at the next visit that the school supplies for us until he is 3. (I plan on posting lots of pictures and videos to show how we use it once we have it so stay tuned!!) Besides the light box Ms. Pam used several flashing lighted balls that had neat rubber textures and a few light up sticks for Liam to try and track with his eyes. She figured out very quickly that Liam could follow much better when the objects were in his null point (up high with head tilted down) than he did if she lowered the objects and moved them side to side opposite of his Nystagmus movement. She also found he preferred some of the toys over the others due to light, color and texture. (This will help us immensely in the future in keeping his attention during the therapy sessions.) Ms. Pam was very excited to get to work with Liam and shared a lot of information with us on Arkansas’s chapter of NAPVI –the National Association of Parents of the Visually Impaired. They do local functions and events that she encouraged us to look into and participate in to connect with other families like ours. It was very helpful and we are looking forward to the monthly visits.

Below are Ms. Pam’s recommendations and Liam’s scores based on the OR Assessment.

Liam is able to obtain a toy when it is dropped within his reach.

Liam is able to visually follow SLOW moving objects and shows attention for 30 seconds or longer.

Liam displays a preference of one object over another.

Liam will look at a picture briefly.

He scored at:
Cognitive 85%

Language 68%

Vision 77%

Compensatory 80%

Self help 81%

Fine-motor 74%

Gross motor 86%

Social 100% (of course!!!)

Liam shows strength in the areas of social, gross motor, and cognitive skills but shows minor weakness in language and fine motor skills. My recommendations are 1. continue to be followed by primary eye care physician 2 participate in ASBVI Early Intervention Program 3. continue providing opportunities for Liam to use his vision to access information of his environment.

How to increase visual awareness:

1. Use high contrast (colors) when materials are presented to him. Present lighter material against a dark background or dark against a light background.

2. Keep visual environment simple and uncluttered. Use one object at a time on a simple background. Sometimes shiny/reflective items work better.

3. The use of lighted toys or flashlights in a dark room can increase visual awareness (light box)

4. Use movement to help elicit visual response. (slinky, pinwheels)

5. Try presenting objects centrally and on either side to see if he will look towards the object

6. For tracking, move objects slowly across visual field from the side toward the midline. Move in all directions slowly from side to side and up and down.

7. Allow him to get as close to items as necessary for viewing.

8. Integrate visual and tactual input. Allow him to touch and feel items and assist in exploration while encouraging him to “look”, “watch,” etc. The use of touch can serve as a means to validate the visual image.

9. Allow ample time for him to process visually and respond physically.

10. Be aware of background noises when working on visual skills. Ambient noise can be distracting and can compete for the child’s attention

11. Consider best positioning for his viewing objects and activities.

Many of this advice can be used for kids with different disabilities not just the visually impaired. Today we have our vision therapy session at Pediatrics Plus with the Occupational Therapist so I will have more on that later this week.