I won’t lie, having milestones come so slowly is maddening, but it comes with a gift…with many gifts. The most obvious gift is patience. It is a gift/lesson I need repeated. It sticks longer each time, but having ‘Buddy’ in my life gives me lots of opportunities to practice.

The second gift that comes to mind is, understanding. Understanding just what it takes to make these milestones. Some days it is like watching the world through slow motion. If I slow down and really watch, I can see the neurons fire, the understanding click into place and the first tiny steps occur.

I did not come to this gift on my own. We have been lucky enough to have some incredible therapists in ‘Buddy’s’ life. One of these is Gay Lloyd Pindar. We lucked into a study she was doing that involved Triadic Eye Gaze, or using your eyes to choose a toy by looking at it, and then to the person holding it as if to say “yes, the ball in your right hand, I choose that.” At the time ‘Buddy’ was very low tone and spent most of his time in a tumble form chair watching the world go by. He was 10 months old and had never picked up a toy and brought it to his mouth. Honestly, it was very hard to play with him and was very excited to watch the people in the study and learn how to draw him out. The first day they came to do the intake they said he would need a positioning consult with Gay Lloyd. I had heard of her and was very excited to meet her.

The next week Gay Lloyd came and I met her for the first time. She came straight in and got down on the floor with ‘Buddy’ and had an instant connection with him. After 5 min, she changed the angle of his chair, and put a Boppy on his lap so that it supported his elbows like a desk and handed him a toy. He immediately brought it to his mouth. I was stunned. I nearly cried. It was like she was magic.

I have since had the opportunity to work with Gay Lloyd, Mechthild Rast and many other amazing therapists, and I now realize that they are slowing down and really seeing everything. That is where the magic is. She looked at ‘Buddy’ and saw how weak his muscles were, knew how the muscle structure worked and was able to find just the right spot to give him support without doing the work for him. They taught me how to watch his every move and tease out his goals and his obstacles so that we can work on overcoming them together. It is slow and painstaking, but it is magical too. What an incredible gift to understand just how many muscles have to work together to merely lift a toy. To work for weeks on those muscles, and then to see him do it!!

That is the best gift of all. The intense joy of achieving these hard fought victories over seemingly everyday things. Sure some days I wish things were easier for him…for all of us. But I also look at ‘Buddy’ and am truly amazed at his strength, his determination, and his ability to overcome. I truly appreciate him and what he can do. I know his for his strength and his heart. I love him deeper for every struggle. That truly is a gift. I get to watch my butterfly unfold in slow motion and relish each wrinkle opening.

‘Buddy’ is determined to WALK!!! I am so excited to be typing these words. What an incredible gift! For him to be this healthy. For him to be so cognoscente. For him to be so determined. I am so honored to watch this process.

It started about a month ago with some very cautious pulling up. Then it got serious two weeks ago when he got good at pulling up but was frightened of getting back to the floor. Every five minutes or so he was pulling up somewhere new and fussing to let me know he was stuck. I made it my mission that weekend to teach him to sit back down. Every time he pulled up he would giggle at the accomplishment. Slowly the giggle would get more stressed as he got tired of standing and scared of sitting. I aimed to get to him just as the fun of standing started to peter. I would then place my hands on his hips for reassurance like a spotter in a gymnastics class, and talk him through it: “You just need to bend your knees. You can do it. I’m here if you need me.” By the end of the weekend he had it.

Next step: cruising. Typical kids cruise by moving their legs in a sideways stepping motion while facing a support structure like a couch or coffee table. ‘Buddy’ would turn his body so he could move his legs forward, which was much too hard for him. His Occupational Therapist wanted us to work on weight shifting side to side. He needed to organize his head around how his body should feel when doing this, so that it would become a tool in his movement toolbox. ‘Buddy’ LOVES Row Row Row Your Boat, so we do it A LOT. I decided a while ago to take advantage of this by adding verses to work on skills. So we added a few new verses all of which he now does while standing and holding my hands;

Row, row, row your boat
Gently down the stream
Merrily, merrily, merrily, merrily
Life is but a dream

Twist, twist, twist your arms
Twist them left and right
Twist them here and twist them there
Twist them everywhere
(to work on alternating movement)

Fly, fly, fly away
Way up in the sky
Fly here and fly there
Like a butterfly
(to work balance and trunk movement)

Reach, Reach, Reach Up high
Way Up to the Sky
Reach, Reach, Reach Up high
Way Up to the Sky
(Shift weight to left foot while reaching up and left, then repeat to right, back and forth, only within the range he is comfortable with. I sing this verse slower to allow him time to control the new movement.)

It made a big difference. In one week he started cruising. It is still slow and takes conscious thought on his part, but he gets it, and he wants to master it, so he keeps at it.

In talking with his teacher we decided that we should get ready for when he breaks free of furniture. There are so many toys out there for little one to walk behind and push, but they are made for kiddos half his size. So it was time for more adaptions. I went to a local consignment shop and found a little cart that seemed adaptable and bought it for $25. Then I headed to Home Depot for some 1x2, wooden dowels, and some hardware for another $25. I had them cut the pieces down to size and went home to get started. My first version is a little rough, there were mistakes in my calculations…We have not been sleeping much lately…silly kids want to work at night too…but I got it working well enough for a trial version.

My basic plan was to make attach 2 dowels to the 1x2s to make a wooden handle structure with a series of hole along the sides so that it would be adjustable up and down to grow not only with ‘Buddy’ but also with other kids in his school as I plan to donate it to them when he is done with it. Then once the height is set, we will load it with sandbags to make it heavy enough to support their larger bodies. ‘Buddy’ is not quite ready for it yet, but I am happy to say the other kiddos are enjoying it, although we may need to reinforce the axles…we’ll see. It is a work in progress, much like everything in our lives.

I had a revelation a month ago. I was sitting at home working on this or that when it occurred to me that ‘Buddy’ is Getting things, he is connecting. This means for the first time in his life and therefore our lives as a family, he is going to Get Halloween, Christmas, his Birthday! How exciting is that?!?! He is alert enough to see the changes around him. He is mobile enough to explore those changes. I was electric! How fun is this going to be? Well, with one holiday down it is fun, and it is also not without challenges.

All of these holidays revolve around food. None of which ‘Buddy’ can have. And while he is more aware, and exploring, he is not aware enough to reason. I cannot tell him “that food is will hurt you” and expect him to listen. So I have to be hyper vigilant. It does not mean we will not attend gatherings. It does mean I will need to talk with each host/hostess ahead of time, so they know our challenges and that we may have to leave quickly if it becomes unmanageable. But that is the hard stuff. I want to talk about the fun stuff…Halloween!

We had such a great time.  We went to the Pumpkin Patch and picked out pumpkins.  We carved our pumpkins into jack o' lanterns and ‘Buddy’ got to play with the pumpkin guts for the first time. I kept it short, was ready to block when he tried to put the seeds in his mouth, and had a bowl of soapy water standing by so clean up was quick. It worked great! He loved it!

We went to the park and played in the leaves!

We Trick or Treated for the first time! I kept his costume comfortable, and the plan concise. I wanted to set him up for success, so I built his wheel chair into the costume, dropped toys off at 10 neighbors houses, and got an early start.

It really could have gone either way. He woke at 3:30 am Halloween morning and refused a nap. I was prepared to abort. Luckily it wasn’t necessary. ‘Buddy’ was a champ! We went to all 10 houses, and even stopped and visited with one neighbor who was having a party. When we got home, like every kid in America, ‘Buddy’ was revved up. He didn’t go to sleep until 9! But then we got our Halloween Miracle…he slept 10 Hours STRAIGHT! That never happens! It was just the reward this tired mom needed. Success!

Oh, this is how I made the car. It only took about an hour, plus drying time.

First I set the box next to the chair and free drew the bottom edge and back edge. Then I took a box cutter and cut it out. Then I did the same for the opening on top. From the scraps I cut out a fin for the left side and traced it to cut the fin for the right. I also used a corner edge from the scrap to make a support to hold the back of the car onto the chair. To attach it all together, I used both staples and shoe laces. I just punched four sets of holes and tied the laces through them for the main support and used a stapler for the rest.

I got a can of black and a can of yellow spray paint. (2 black would have been good.) I painted a base coat of black, then hit it with the yellow for the flames and accents. To make the color a little more solid…since I ran out of spray paint…I went over the top with acrylic paint and a brush. Then I set the whole thing over top of the tray which gave it the needed stability. Presto, one super hero car!

Communication. That is such a big thing.  A big word.  A big concept. A big impact. It is hard even for us adult with healthy brains and bodies and tons of experience. All it takes is the loss of sleep, or two overworked people not being able to say all they means and bamo conflict.

Now imagine a small child learning he/she has desires. That other people are able to make sounds and get those desires met. But he/she doesn’t know how to do that…Presto frustrated toddler becomes a terrible two year old…or three.

Now let’s add another layer. This little person doesn’t have great dexterity in his fingers so sign language is tough. His vision is not 100%. In fact may not be 75%. It is hard to know what he can make sense of. You are told he cannot make sense of picture symbols, and may need 3D objects. How do you help him? It is a little, no, a lot daunting.

This is ‘Buddy’. He went from being always happy to whining. Not horribly, but I don’t want it to get to horribly. There is already too much stress in our lives for that. Being able to go to a seminar with Dr. Christine Roman this summer was perfect timing.  One of the things she touched on was literacy with Cortical Vision Impairment. I finally had a starting point.

‘Buddy’ tested at 5 to 7 on the CVI Range. One being profoundly affected, and 10 being resolved. Two years ago, he would have tested significantly lower. This is the wonderful thing about CVI, with intervention it can improve. You can actually help them! With a low score of 5 ‘Buddy’ should probably have started with 3D, but I went 2D for two reasons. He was right on the cusp between the two and I had seen him have some success with photos. So, fresh from class I went to work making communication cards for home and school, and they are working great!

Here is how we use them. When ‘Buddy’ shows frustration, or when it is time to pick and activity ‘Buddy’ is offered two cards, say Milk and Water. We ask if he wants milk and indicate the Milk card, then repeat with the water. After he picks we swap the order and ask again. If he picks the same card he is given the object. Sometimes it is subtle, but often it is very clear and there is a huge smile at being heard. In fact he has done so well with 2 cards, this week we are moving to 3 to give him more options.

As for the cards themselves, this is how I make them:

Photos – First, using my Iphone, I photograph the objects that he uses daily: food, toys, walker, bike, etc. In order to get the best photo possible I place the item near a window, on a black fleece and use a black foam core board to block direct light. Indirect light creates less glare, less shadows and clearer photos.

Printing - Next I dump the photos onto my laptop and drop them into a word doc. This allows me to easily track the batches of cards I make as numbered documents. Once in the word doc I crop the picture as close to the object as possible to not waste ink. Next I resize them to fit the cards. Our cards are about 4x5. If the page size in the View tab is set to 100% then you can simply hold up a card to the screen and re-size each object to fit your card.

Text- ‘Buddy’ is not reading yet, but I want to start connecting the idea that words mean something, so I included the name on these cards and I did it following Dr. Roman’s CVI literacy advice, Bold, black with a tight halo of yellow. The reason for this is that the individual letters are hard for Kids with CVI to make sense of, but with the help of the yellow outline they can learn to make sense of the shapes of words. Here are the instructions for the font I ended up deciding on:
                Comic Sans 48 Bold
                                -Text Effects:
                                                -Glow
                                                                -Glow Options
                                -Text Fill:
                                                - Solid Fill
                                                                *Color: Black
                                                                * Transparency: 0%
                                -Glow & Soft Edges:
                                                -Color: Bright Yellow
                                                - Size: 10 pt
                                                - Transparency: 0%
(You may need to adjust this for your child, but this is a good starting point.)

Scissor Work: This part can take a while. I recommend have a friend over to help and chat or finding a good book on tape to keep your mind occupied. Each picture and word needs to be cut out very close to the edge of the word/image. The reason for this is that the paper and the poster board have different sheens and that difference can be used to help the child find the image. Think of it like a shadow effect. Conversely, if you don’t do this, it could make it harder for the child see the image.

Assembly: Using a large paper cutter I made a huge stack of blank black poster board cards. Then I used a glue stick to paste the image and the word onto the front of the card. On the back I pasted 2-3 salient features to describe each object. For example: Elephant – Big Ears, long thin trunk. That way we are all using similar feature while we teach ‘Buddy’ what makes an Elephant and Elephant.

Lamination: Lamination is not recommended. It can cause a glare that obstructs the child’s ability to make sense of the object. The glare becomes another feature in the object. Unfortunately, ‘Buddy’ is a mouther. Everything goes in his mouth. Lamination was needed. I asked Dr. Roman about using matte laminate and she said not to. That is dulls the image too much. She said if lamination cannot be avoided that regular laminate was best and to be aware of the glare when using the cards…and to stop laminating as soon as possible.

Lastly, I found this lovely little box in the bathroom section of Storables.com for 6.99 that I use to organize the cards. 

Now that I have two batches of cards done, I want to create a couple books using those same pictures to reinforce the object/image relationship. It is a good way to keep my momentum up. His interest has slacked a little now that he is focused on standing and hopefully walking, but I want to have more supplies ready for when he is. It really helps that he has shown so much interest in the first batch. Wish me luck in this next leg of the marathon.

Well the day has come. It is time for a big boy bed. I went into ‘Buddy’s’ room at nap time to find him standing in his crib, his tummy even with the top of the rail. I knew it was coming. I have been working out the plan for the last 6 months. Would we get a bigger bed? Purchase a special needs bed? Those of you who know me, know that is unlikely. Make a custom twin sized crib or find someone who would?

I started like I always do, Googling for images of special needs_____, in this case: beds. Just to see how other people solve the problem. What problem? Well, in our case a kid who is too tall for his crib, but doesn’t yet understand how to climb in or out of pretty much anything, much less safely. In addition, we are only just beginning to sleep through the night (sometimes) and don’t really want him roaming through the house when he isn’t asleep at 3am.

The last part was the easiest to solve. We put a baby gate at the entrance to his room and completely child proofed it. Everything is anchored to the walls. There are only two cords and they are both well anchored and hidden. The curtains were pinned up to halve their length and keep out of reach. All edges are padded. And lastly, the toys in there are quiet enough to sleep through…in case he wants to be up when we don’t.

The harder part was the bed. The first pictures I found of Pediatric Beds for Special Needs were basically twin sized cribs. The walls can vary from one to four feet high. The sides can be bars like a crib or Plexiglas, padded or not. No doubt there are kiddos who need this kind of bed for their safety, but I did not feel ‘Buddy’ did. Nor was I willing to pay the $7,000 plus price tag.   

Next I looked at day beds. My thinking was they would have three sides, and I would only have to worry about one open side. Then a friend mentioned a trundle bed. If he did fall out, he could land on the second mattress. Again, the price tag was high, for a maybe.

 I began to contemplate a custom bed, something that converts to a more traditional bed as he grew. But then I noticed the spring frame in his crib. I noticed the way the corners were reinforced and thought, well there is his new bed right there. So custom I would have. It would be simple and homemade, and very, very inexpensive. Here is what I did…

Supplies:

• -4’x4’x8’ Doug Fir for $10. Home Depot cut 4: 5” pieces from it for me.
• -12 wood screws about 1.5”
• -12 washers
• -Everbilt 2 in. Zinc Plated Double-Wide Mending Plates (4-Pack) $3.22
• -Magic Sliders Round (or similar) (4-Pack)$7.98
• -Paint (I used left over found in basement)
• - drill bit to match your screws
• -Drill

 Total price under $25

First I sanded the 4 – 5” blocks of wood, attached the slider feet, and painted them.

Next I took the crib apart, and stored it, keeping the spring frame and mattress out. I lined the blocks up to the corners of the frame and used the mending plates as a template to mark out the screw holes. Then I drilled the holes and screwed the plates down using the washers to balance the pull around the frame.

Then I put the crib mattress back on top. I am using a bed rail at the start to keep him from falling out while sleeping, but with the bed only 5 inches off the ground and a padded rug under it, he should have a fairly safe learning process.


(Oh, I added foam padding to the exposed corner of the frame too. The mattress covers it, but just in case...)

So, how is it working? Great! It is basically the same bed, same mattress and same smells. He is sleeping great, well, normally, which my husband will tell you is not great yet, but it isn’t worse. I purposely left a corner open for him to be able to crawl in and out. I did not however help him find it. My hope was that it would be a while before he found it. Well, he was a quick study. He found it the second day at nap time. I padded the floor with pillows just in case and out he came, head first walking his hands out like a wheelbarrow and legs kicking in the air. He was completely safe and completely hilarious. Now that he has found his way out, we are working on getting back in. Happily, getting out is not his first thought. On day three nap time he played quietly in his bed for a full hour, no fuss and no escape. I call that a success, and you can’t beat the price.

CVI and books…well, you see most books are too complex for a child with CVI to make sense of. So we start slow, and we make our own. The idea is to take an object the child already knows and photograph it in a variety of positions. Then make copies of it in a variety of sizes. Then you paste it onto a black page first large and alone, then small, then in different positions, then with another object, then with more complexity behind, and keep going. The idea is to train the brain to recognize that Elmo is defined by being red with white googly eyes, whether he is big or small, just a head or a whole body. That the beach ball is also red and white, but it is not Elmo. Eventually, the child will be able to pick out Elmo even in a complex scene.

I plan to make this book, but am still getting the pictures printed and cut out. So I thought I would adapt a board book with some of those same concepts. I took a Baby Noah World Animals book and made a few changes.

First I covered the complex white pages with all the descriptors over with black construction paper. In one case I blacked out the background of the hippo, because it was too complex.

Next I printed out the animal names in 46 point Comic Sans Font, black with outline and a yellow (10) glow text effect. After trimming this very tightly to the letters I glued it to the middle of the newly blacked page.  I did this because Dr Roman-Lantzy has been working on a literacy method which involves using word shape and favored colors to teach kids with CVI to read. I figure it can't hurt to start getting words written in this way in front 'Buddy'.

Then I outlined the animals with yellow glitter glue to help draw his eye to the important parts of the image. I used alligator clips to keep the pages apart while the glitter glue was drying.

Lastly I went online and purchased some resin animals to match those in the book, so we can talk about 2D versions while playing with the 3D versions to help him make the leap into the world of symbols.

Wish us luck! It should be dry soon.

So I have been going through our gear and shedding things we no longer need in an attempt to live a less cluttered life. I know, who am I kidding…not possible with a kid. Never the less, I am making a valiant effort to make a dent. In doing so, I decided to get rid of our high chair.

Our high chair was a hand me down from a friend of a friend who wanted to help out. It was not the fancy wood designer chair of my mommy dreams, but it was the perfect high chair for us. It folded and traveled well. It reclined, which in the beginning was very important. ‘Buddy’ was floppy for a very long time. Even with all these features it wasn’t working…until we got some help from Gay Lloyd Pindar and Mechtild Rast. These are two of our favorite therapists. I get a feeling of calm when we see them. I know they will help us solve any conundrum, and be super supportive of me in the process. We love them.

So way back when ‘Buddy’ was floppy, we were trying to get him to eat. I made all this special food, but he was not interested. I could get it into his mouth and he would swallow, but it wasn’t progressing. He did not actively seek the spoon or the food in any way. We were scrapping it into his mouth and hoping he would swallow and get some down. So we invited our favorite ladies over to seek some help. It was wonderful. The first thing we did was retro fit the high chair so that it offered more support: Foam crescent Velcroed behind the head to keep his head position forward; Rolled up cloth diapers under the cover to secure his hips and legs; another piece of foam with a plastic covered cardboard piece to raise the footrest so his feet were supported. (I later reduced the foam height as he grew.) It turns out being unsupported was distracting ‘Buddy’ from eating.

When a child is low tone, floppy, it takes most of their attention just to keep their body together and organized. If they are sitting upright, it is a herculean effort to do so. Once they have their body fully supported they can then focus on other tasks. This was true of ‘Buddy’ too. Once we altered the highchair, he was clearly more stable and more relaxed.

Next was a simple little change in how we gave him food. Because ‘Buddy’ was not closing his mouth around the spoon, we were scraping the food off using his teeth. Gay Lloyd told me to place the spoon gently on his tongue and watch for a subtle movement of the jaw. Sure enough, as soon as I placed the spoon on his tongue, his mouth began to close around it! ‘Buddy’ was eating!! We still had to go slow, watch close and sometimes stroke his jaw line to encourage him, but the change was remarkable! For the next few months eating got better and better, he even began holding his own spoon! Unfortunately, we hit a road block due to teething and ear ache pain, but I am not too worried. I know he can eat, and he will get it back when he is ready. When he is ready, he will sit at the big boy table with mommy and daddy in his booster seat, and so we say good bye to his well used, well loved and well adapted highchair. Giving thanks to everyone involved with making it work for us.

Last year for Buddy’s birthday we wanted to get him a trike. He was turning 2, could not sit up on his own, could not press into his legs, and in fact did not use his legs much. I thought it would be great if we could get him upright and moving through the world at his level so that he could engage more.

When I first started looking I was astounded by the cost of special needs trikes. The least expensive was $350, the most expensive $5000, but on average they were $1000. Just the little contraption that helps the kids keep their foot on the pedal was $80. It was time to get creative. Luckily there are some interesting options out there for younger riders and I was able to find a good one and adapt it. Here is how…

First I started with the radio Flyer 4 in 1 for $99, which has the following features as listed on their website:

·  Removable wrap around tray with cup holder to protect your child
·  Secure 3-point harness (removable)
·  Adult steer & stroll height adjustable push handle (removable)
·  Switches from pedals to foot rests (read lockable, this comes in handy later)
·  Comfortable headrest provides neck support (removable)
·  Adjustable grow-with-me seat
·  Unique stroller-style canopy with UV protection (removable)
·  Covered bin for parent or child storage
·  Quiet ride tires
·  Sturdy steel frame
(note: no brakes, I decided no brakes was better than the untrustworthy brakes some bikes offered according to reviews.)

Then I made the following adaptions to the bike:

1.       I took off the harness and high back because his therapist wanted him to do the work of balancing rather than learning to trust the bike to do it for him. This will not be applicable in every case.

2.       I installed the front wheel backwards. I did this because when you push the bike with the front wheel unlocked, it draws the pedals around and I wanted the bike to give him the sense of alternating movement. Later when he is able to do more work pedaling, I will turn the front wheel back around so that he has to push to move the bike.

3.       I cut a small piece of no slip pad to set under him on the seat to help him sit without sliding. (I store it in the trunk with the scarf coming up.)

4.       I went to a thrift store and found Teva sandals that are a good 5 sizes larger than his shoes ($3) and zip tied them to the pedal. In this way I can simply slide his foot, shoe and all, into the larger shoe and Velcro it into place. There are a few different configurations that work when attaching the sandal, so check with your therapist about best positioning.

5.       Because his hips tend to flare I used a scarf to tie a figure 8 around his legs and the bike, tight enough to help pull his legs center, but loose enough for him to move to pedal.

And off we go. In the beginning I started out with the pedals locked as foot rests. This gave him time to organize his body sitting on the bike. After a bit I would unlock the wheels and move slowly so he could work out what his legs were doing. If he got too tired, or I needed to move faster, I would just lock the wheels again. Now that we have been doing this for a year, he can go for an hour with the wheels unlocked and at a steady gate for me. Soon, it will be time to turn the wheel around and let him do more work.

This has been my favorite find/adaption. He loves it so much! He gave his first clear “more” sign when I stopped to chat with the neighbor. He reaches out to touch all the plants and fences. He sits up tall and really looks around to take in the world, and all for under $115. Not bad.