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.

‘That Parent’ is a label I have worked hard to avoid. ‘That Parent’, you know, the one who’s considered too demanding, too noisy, too entitled, pushy, a pain in the ...  Not that I haven’t been her, not that I think it is bad to be her. In fact I think it is our job in fighting for our kids. The problem with being ‘That Parent’ is that providers write you off. You lose credibility. This is why I work so hard to see every side of a discussion, to really hear what is being said and where it is coming from.

Last weekend I went to hear Thomas E. Reynolds speak. He is a theologian with a special needs son. He wrote Vulnerable Communion: A Theology of Disability and Hospitality. Mr. Reynolds was speaking on Community and inclusion. He was saying that hospitality is good, but that is often comes with the expectation that the outsider fit in. He proposed Compassionate Respect as a better way to include those that are often considered outsiders. In this way, we can accept people for who they are, respect them for their experiences and learn from them through true connection.

During the question and answer session, a question about power was raised. When you have special needs, or are the caretaker of someone with special needs, you have to fight for your power. Often you are expected to do as you are told. Often you are too tired to do anything else. But there are times that you do need to speak up and ask questions. This is where the ‘That Parent/Patient’ label comes in. We are exhausted, overwhelmed, sleep deprived and desperate. It is hard to have a calm rational conversation. It is easy to get defensive and angry. We are in a different world from the people we’re trying to talk to. There can be major communication breakdowns.

When I heard the term Compassionate Respect, something clicked. Wow, what a powerful concept. Unconsciously, this is how we try to interact with all the amazing people who have helped us with our son ‘Buddy’. Somehow, it felt as if Mr. Reynolds named our actions and gave them a more solid form.  I know these doctors, nurses, dieticians, therapists, teachers, etc. are in their field to help. They have hard jobs and they give so much of themselves to so many. It can be exhausting work. It is so easy when exhausted to forget that the other person may be as well.

Compassionate Respect, it had such a substantial feel. When I think of all the people who have had a major impact on our lives, I see Compassionate Respect in action. When I think of my biggest fights for Buddy’s care and needs, the successes have been because of Compassionate Respect on our part and the part of the provider. The thing about Compassionate Respect is that it has the power to draw itself out in others. It sets a tone to conversations that is very productive.

I could not resist the urge to talk with Mr. Reynolds after his speech. I told him how the discussion struck me. I told him that this is how I approach all of my son’s providers. He looked at me and said: “Wow, that is a lot of work.” I couldn’t stop myself, I started crying. He was right. It is a lot of work. There are times that I have to take a deep breath and dig deep. But I do it. I do it because I know the providers need to be seen and appreciated. I do it because I need not to be angry. I do it because it is better for ‘Buddy.’ The answers are fuller and richer when we work together, and ‘Buddy’ needs to know how to be Compassionately Respectful himself.