Pieces of the Puzzle

Have you ever found yourself working a puzzle, knowing all of the pieces were there, yet finding it impossible to fit any more pieces to create the bigger picture? I know I have. You pick up each piece, confident it must fit somewhere inside the border of 'end' pieces you have created but turn, turn, turn and nothing. You put it down and begin the process all over again with another piece. Then, all of a sudden, you pick up that same piece you have been working to fit for days and place it perfectly! It is a great sense of accomplishment as you see more of the big picture taking form. Down syndrome is a lot like that. It isn't that a DS child is missing any of their pieces, it is that we must continuously remind them they are there until one day, they fit perfectly together and a new concept is learned or physical milestone is reached. The moment is pure eureka! I see this so often in Harper as she continues with her various therapies. She has been in physical therapy (gross motor) for four months now, developmental for three and most recently, occupational (fine motor) for a few weeks. Each new concept introduced is taken the same way as that puzzle piece you are unable to fit. Where does it 'fit' in the bigger picture of what she is supposed to do? How will she be able to use that skill? When will we see it all come together? I watch and wait and then one day, she is rolling around like a little rollie pollie or propping herself on extended arms, even sitting all by herself. It is amazing when you see all of the pieces come together and create a bigger picture. She is beginning to work on the 'pieces' she will need to eventually crawl and ultimately stand/walk. Weight bearing skills with her legs. A bit premature now but that is how it is done. An introduction to the next concept, with hours of therapy to follow, until it is mastered as well. The big picture is very large, 3D in fact, and will always be expanding but it is so nice to see mini pictures within the big picture come to fruition. Her physical therapist mentioned discussing the selection of special shoes for Harper in the next few weeks. I am not sure if she will simply need a shoe like the classic Stride Rite walking boot or a special shoe which can accommodate braces, if need be. All things I will learn when we have that conversation. Other than therapies, Harper has been doing really well. She has encountered a few germs and has had her first experience with the nebulizer but I assume that comes with the territory of having her in the gym two days a week. She is quite the 'licker' and licks everything from the toys to the gym mat (YUCK) to the therapist. She tends to protrude her tongue a good bit more when exerted physically, as an over compensation of balance in many ways. I am sure as she grows and gains stability in her trunk/torso, head, overall balance, she will find less of a need to hyper extend her tongue, even involuntarily. Speech therapy will also aid in helping her learn how to properly control and place her tongue for verbal communication. This should be implemented in the next month or so. She is also just at that stage where everything goes in the mouth and is part of her exploration of the world around her. Food is a wonderful example of something she likes to go into her mouth as she is a very good eater. She will try most anything offered to her. Still no teeth, which is common in DS children, so we still remain a bit limited in what 'solids' we can give. Over the past few weeks, I have noticed a bit of laziness in her right eye, during feedings, and have made an appointment to have that checked with an opthamologist on Friday, April 8th. Her occupational therapist has also noticed a bit of weakness in her right side. I wonder if there may be a correlation and believe it may be a product of low muscle tone and easily corrected with some eye strengthening exercises. We did a bit of those with Hayden where we covered his stronger eye and played games which forced him to strengthen the weak eye, like catch. Harper tends to 'loose' control of her right eye when trying to focus in on something, for example her spoon while feeding, but is able to quickly correct it. Certainly nothing too serious or even noticeable to others but it is like everything else, catching it early on and correcting it, the better. Anything to help put her on a level playing field, I will do. In everything DS, early intervention is the key. I recently watched a news article which termed the piece as 'breaking development' in the area of DS research. Naturally, I was eager to watch and learn. I am certainly not seasoned in the world of DS research and development, but after watching, was surprised this was labeled as a medical breakthrough. It reiterated what I have already learned, which is the importance of therapy from birth in the success of these children and their future endeavors. The news piece also went on to state how the top doctors from around the country are conducting such research to help families 'deal' with Down syndrome. This comes across as something that is a burden, as in you deal with stress or deal with bullies or anything inevitable or an inconvenience but certainly does NOT include Down syndrome. I am not a 'politically correct' type person but find this terminology to be quite offensive. Ask any parent of a child with Down syndrome or anyone who has personally come into contact on a daily basis with DS and ask them if they have to 'deal with' it/them? I suppose, I will just have to 'deal with' mass media and their inability to accurately describe and report the news! I don't believe running around trying to omit every offensive word from our vocabulary is the answer but a bit more accuracy and expansion of our lexicon certainly wouldn't hurt. It isn't that I even expect everyone to understand what it is like to raise a child with Down syndrome or any other special need for that matter, but a little sensitivity in their comments that are far reaching would be appreciated. It is also why I believe I was blessed with my own special needs child, to help alleviate those misconceptions and ultimately help erase discrimination of anyone who may be 'different' than what society defines normal. An awful big task but I am up for the challenge and recruiting team members!