Wednesday, May 18, 2011

Buddy Walk 2011

Im excited to announce that our Buddy Walk Team page is already up and going! This year we are going to campaign hard to have a big team walking. We will still raise money, but I want to focus on the importance of being part of a team and sticking by each others side for a cause.

I want to celebrate all of our family and friends that have been on this journey with us who stepped lovingly into the world of Down syndrome and to proudly join all the new, wonderful friends we have made since we became part the Down syndrome family.

Our team name this year is See Kai Run. There is a children's shoe company named See Kai Run and they said that they would be honored for us to walk in with their name in support for Down syndrome. They will be sending us some free Tshirts for Kai and Lilah to wear during the walk(under the Buddy Walk shirts, of course!) and have asked for pictures. I was very pleased to get the response to my request within one day and for the nature of the response.

I will be posting the link to our page at the top of the blog with my other links and you can also click here to go and see our page. We've already got some of our most loyal family and friends signed up and/or donating. So, take the pledge! Sign up and we will see you there on Dec 3, 2011 at Minute Maid Park!

Sunday, May 15, 2011

Finding the key that fits

After much worrying on my part that I would never be able to communicate with my son, never know what he is thinking or what he wants, I think we are approaching a language breakthrough. Now, a breakthrough in our world is much different than the idea you conjure up in your head when you hear the word. There is no marrying of Schr√∂dinger's cat and Einstein's quantum mechanics here. Although my idea of communication versus yours may be very similar to said cat...its both alive and dead until the moment you open the box.

Or in our case, his communication skills are all in there but from any onlooker in a crowd, he appears to have no communication skills at all. And up until last week, we were part of those onlookers in the crowd. I knew that my son could understand me and I could tell his understanding was growing day by day. He responds almost all the time to his name. When I ask him to Come here, he almost always does(as much as any 2 year old will, I suppose) and he understands several other requests. The simple fact that he is understanding and responding appropriately more and more every week, shows that he is learning.

Before I had a child with Down syndrome I never understood the level of complexity that exists for every task that we learn. Because of my son I get to see the delicate flow sheet that is an integral part of every thing we learn, especially the things that seem to evolve naturally as our child develops from an infant into toddler hood. I didnt appreciate this step by step process until we had Lady LaLa. Before she was here, all I focused on was achieving the end result to say Kai was successful or 'on track.' Which, truly, is how any first time parent thinks, or even parents of children that reach all their milestones accordingly. You may see a few of the 'big' steps in between the major milestones, like rocking back and forth on the knees before crawling or cruising furniture before walking...but to the general population, these are typical signs we impatiently wait for and once they happen we run telling all of our family and friends of the impending milestone. This natural evolution is expected of our little ones and we never stop to think of all the mechanics, development, skill, want, etc that goes into each milestone being achieved. We are natural born over achievers, and something is flawed in our genetic makeup when we hit the age of 16 and that seems to turn off :) but thats for another day!

So, like I said, we also gauged Kai's next milestone by the major markers that precede them, which is fine. It meant he would do it, but just because he was cruising furniture didnt mean he would be walking in  X amount of months like typical children. Of course we didnt know that because he is our first. I just assumed that the steps to walking were A->B->C and since he was at B, he would be walking very soon. Well, thats not so. The beauty of having a child with Down syndrome is you get to witness all the in between, minutia that build upon one another to achieve the final outcome. Once you realize that, the anticipation of seeing what the mini-step is takes away from the sometimes grief or sadness that can wash over you as see your child slipping further behind his peers. This isnt something I learned overnight. Kai is 2.5 years old, and I just learned this last week.

I know language skills are broken into 2 major categories: what they understand and what they convey, and I only learned this within the last year when we had our first appointment with the Down Syndrome clinic and he was graded on language in those two aspects. In the last few months he has been understanding a lot of our simple sentences and requests, which is very exciting to us. I assumed the next step would be pointing to what he wanted and maybe some one word utterances. His babbling has returned after a long disappearance since we have been home, which is due to him honing his walking skills and developing his climbing(which he does very very well). Now that those are mastered, Ive noticed a resurgence in his babbling. Kai has, for the most part, been pretty vocal, even if to just repeat one syllable sounds over and over, but the sounds were there. Somewhere along the way, those were not built on when the timing was right...probably due to our life circumstances at the time, and we lost those initial golden chances. Luckily they come around more than once. We have been working on signing with Kai since he was about 6 months old as well. He picked up a couple, but lost those as well. Again, due to outside issues, in my opinion. But we are back on track. We still work on signing, but he isnt a big fan of 'hand over hand' to teach and show him. He is very stubborn and independent. I was beginning to think that he just wasnt going to be able to learn to communicate. That he just didnt have the capability or we were just going to be one the families who had a non-verbal little boy. The thought of never hearing my son call me Mommy just breaks my heart.
So I decided that if he wasnt going to be able to tell us what he wanted through verbal speech or even signing at this point, I needed to find some way for him to at least be able to tell me his basic needs. Even treading into this territory was so sad for me. I felt like I was giving up on him. I felt like maybe there was some other diagnosis we were missing. Or that I had simply failed him. It didnt really matter what I felt, it was my job to somehow find the tools that he could work with to tell us what he needed. There is nothing that breaks and bewilders your heart more than a 2.5 year old that cannot simply point to or tell you what they want or need. Its like the guessing game you play with your newborn when you bring them home, only this one follows you around the house screaming.
I decided to try flashcards. I first bought some from Signing Times, because I intended to still attempt to teach sign and to teach him to speak. I had not given up on him, I just needed another option or solution. I got the flashcards. They were cute. But how am I supposed to teach him what a banana is or an apple is or a drink, cookie, etc based on a drawing on a card? To him that makes no sense at all. He cant equate a cartoon cookie with the Nilla Wafer I put in his hand, or the bottled water on their card with his sippy cup of water. So I decided to make my own cards. I gathered up his favorite toys, some essential items like high chair and bathtub, and threw in some Nilla Wafers, Graham crackers and his sippy cup and took actual photographs of them. I would have used more foods, but table foods is our other problem area that Im trying to solve. Then I printed them on my little photo printer and laminated them.

Over the course of about 3 weeks, I brought the cards to the table with the actual items. I started with just snack time things so if he got upset and didnt want to finish we wouldnt be missing a meal. First we just place the cards on the table with clear baggies of the cookies/crackers on top of the picture. This was my first jab at association with him. I wanted him to learn that the picture he was looking at was the same thing in the baggie. And thats all I did. Just sat them in front of him while he ate the snacks. Then as I pulled them out of the baggie, I would hold the cookie next to the picture. You could see him scan the two and actually look at them both. Its almost as if you could see the wheels turning. The next few times I laid the picture on the table with the bag on top of it and would pick up both bags and let him pick which snack he wanted. He would look between the two several times and finally reach out and touch one, so I would give him one. Then we transitioned to after he picked one and I took it from the bag, I would put the individual item next to the picture so he could see while naming and signing it.
By now you get the is literally a step by step process. It sounds like it is very tedious and would take forever, but it hasnt. Within a couple of weeks you could hold up just the picture and he would touch one and we gave him that snack. The next steps came all on their own with no prompting from us, which are the most exciting moments!
Last week during Speech therapy we used 3 of his flashcards that were some of his favorite toys. I picked 2 that were absolute favorites and one he liked a lot and gave them to our SLP. The actual toys were behind her and she laid the cards out on the floor in front of him. I had never shown him the cards prior to this, but I think he now understands the association of choosing from them and getting something he wants, even though they were cards he has never seen. He intently studied the three cards and picked up one and handed it to her. It was his ABC drum, one of his favorites. 'J' handed him the actual drum and let him actively play with it for a few minutes. We took it all away and laid the cards out again, different order, same cards. He looked at them all carefully and picked up one and handed it to her...the drum :) This time she was surprised and happy because he was choosing the same item and when she gave it to him he played with it appropriately. So, 3rd time...laid them out...again, the drum...this time I truly believe she was astonished. Mostly because we had only worked on the food cards with him and he had never seen these. J was very excited about his ability to realize that this was the same concept. Sometimes our kids with DS have spatial and conceptual difficulties, but usually do really well with concrete. So, as far as I am concerned, it makes perfect sense. If you give him a picture of an actual item that he is familiar with in his own home, with a little work he will be able to make the correlation and know that it is the same item in the house.

So that was a proud moment. As any DS mommy knows, our 'milestones' dont come one at a time like most typical children, but in clusters. I think it is because we celebrate every step as a milestone because if our child has to learn that and we work with them to get through that flow sheet, you bet we are going to make a big deal about it! Luckily our trend seems to be to teach him the first few steps and he kind of builds on it from there. I know that my son is smart and intelligent. I know that his mind is complex and not simple like others think. If you ever sat with him for a day you would see it too. He is very interested in the way things work and mechanics, whether its stacking things, spinning things(like hula hoops, bowls, etc), tossing a ball back and forth...he likes to watch things go and to be the one to make it happen, and he is good at it. Anyway, I digress...we continue our daily flashcards at snack time, sometimes alternating between working on that and working on trying new foods(where the mere act of him picking up a foreign food and licking it, putting it on his tray to be done with, is a milestone...oh yes, trust me, that IS a feat to not have it hurled to the floor followed by a tantrum that ceases the rest of the meal).
Well, last Wednesday I was at my desk that is right next to their playroom and worked on some stuff. A pack of their Spongebob graham crackers were sitting on the desk. Out of the corner of my eye I saw Kai walk up to the desk and pluck the bag right off...he has never done that before! But I didnt look at him, just kept doing my work on the laptop. He walks around the side of my desk, comes up to my chair and hands me the bag of crackers.

I. Nearly. Fell. Out. Of. My. Chair.

Never has Kai handed me anything, E.V.E.R. Never has he asked for something so plainly and clearly...he wanted a cracker! And it was done with no grunting or upset crying.
My son had just ASKED me for something. Kai had just told his mommy what he wanted, for the first time ever. That moment was as if he uttered his first word ever...and essentially he did. When you wait over 2 years to communicate with your child, this is as beautiful as the spoken word. I was on Cloud 9.

Thursday snack time came. I popped him into his booster, pushed him up to the table and laid out his cards for him. Usually its just the crackers. Today I had the two crackers and his sippy cup. I went to the kitchen for Lilah's snack and came back to sit at the table between them. As I sit down I notice that Kai has one, (and only one)of the flashcards on his tray table. Its the sippy cup. Was it a fluke? I dont know. I wasnt present for the selection, but none of the other cards were tossed on the floor, so maybe it was intentional? On any note, I gave him his cup...and he promptly sucked down half the glass of water immediately. I laid out the 3 cards again and he picked out a cookie one that time. Gave him the cookie, he ate the cookie. Then I just laid out the cards with an actual item on top of the card. This time he pulled the sippy cup again, and again, drank a lot of his water.

To our family this is huge. Our little boy is learning to tell us what he wants and needs. Momma just needs to find out what the heck else she needs to take pictures of. During all of this time his babbling has increased immensely and he has learned to mimic a couple of things I have taught him. And he learns them within a couple of days and then even builds upon those by himself.

So now that my son can look at pictures and be able to choose what he wants, or see a bag of something and bring it to me because he wants it, what is next in our quest to hear his beautiful voice? I wish I knew, but when it happens I will know. Throughout all of this I have learned a lot too. I have learned that yes, you must crawl before you walk, but that there is about 80 steps in between that, and even though I dont know each one, I know how to facilitate and recognize them. He will still naturally learn a lot of the tiny steps on his own, but it is up to me to find the key that fits. I have to find out HOW he learns most effectively and facilitate that so that he can reach his full potential and beyond.

As daunting, frustrating and sometimes reaching the point of hopelessness that Down syndrome sometimes leaves you feeling, all it takes is piecing together the puzzle of your child's mind. This is actually true for all children, and our children should be included in these groups: All Children, Most Children...our children just sometimes have more pieces in their box.

Here are the actual photos that I have used for Kai: