A place where achievement, expectations and dreams for babies and children with Down Syndrome thrive! This blog was started by an Occupational Therapist and mother of a 3 year old boy with Down Syndrome (hereafter referred to as T21), who refused to believe the stereotypes and set out to form her own action plan. Armed with a Master's degree in Occupational therapy she set out with an insatiable desire to redefine the reality of what it meant to receive a diagnosis of T21 today.
Good Health....Therapeutic Play.....Changing Perspectives....Creating Change
Good Health..Therapeutic Play..Changing Perspectives..Creating Change..Good Nutrition..Early Literacy..Well Children..Achievement
Monday, September 26, 2011
Walking the Walk
I love this photo, it really epitomizes our life with three boys! Believe me I have tons of these as they take over my photo booth app!
I've been away for a bit trying to get into the groove of this new school year. Noah's in fifth grade and so many new things coming his way, JV baseball, soccer and student council speeches, all of these on top of maintaining grades and managing the increased expectations around the house. Ryan (with whom I can relate all too well!) has to adapt to the increased demands of second grade, it's no longer enough to be able to read, but apparently now you have to go slow enough to actually know what you read. This is very difficult when you have 74 different ideas all competing for time - again, I know exactly where he's coming from! And of course, trying like crazy to get all of Lucas's programs done between the hours of 8:30 and 2:30, so as soon as the boys walk in the door I'm theirs.
Through all of this I can't deny that I move through experiences with Noah and Ryan with an eye toward Lucas. How will he manage a heavy backpack full of books? Will he be able to play baseball and soccer? How in the world will I have enough energy to do what must be done? If I don't, how do I explain to my boys that Lucas indeed was on the right path, but I was too tired? The nice thing about being busy is that you have very limited time to dwell on these thoughts, but they poke in none-the-less.
On top of these questions, several moms I have come to respect and admire on this journey seemed to be having a crisis of faith as well. Two friends have had to deal with hospitalizations of their little ones because of viral infections that led to severe breathing problems. One mom whose daughter is older was questioning whether she should "adapt" her dreams for her daughter, and another is questioning whether to try the educational route she believes in her heart to be possible if it will end up with her son being moved to a different school anyway if it doesn't work.
I have no no great insights to lessen the burden on these moms, I can only say that I truly know the weight of these things on their heart and soul. It is that very weight, and fear of it, that gets me crawling the last 30 meters, or dragging out the cutting board and vegetables when I feel like ordering out, or forgetting about the last reading session of the day because I can barely keep my eyes open. It is also what gives me some clarity.
Until Lucas proves he can't, I have to assume he can. I have to let him go to regular school and give him the chance to carry the backpack, try out for the team if he wants, and run for student council. I have to let him follow the path I believe possible regardless of what might or might not happen. I have to let him have a shot at forming friendships and relationships wherever he goes to school and if we have to make changes somewhere down the road, I have to believe he will do it again in a new environment. I can't freak out when a parent has the poor judgement to send her kid to school whooping (Seriously!), the bottom line is that our world is filled with things to which Lucas will be exposed. I can't worry about the next time he gets sick, because inevitably, we all get sick. I have to take solace in the fact that he is very healthy and if he succumbs to an infection, it will not be as devastating to his system because it is strong.
I am a bit of a control freak (I'm sure you didn't know) so when Ryan is reading something for the third time at the speed of light, I get frustrated trying to get him to slow down, I think about the next couple of grades and how demanding they are and wonder how in the world I'll get him to slow down enough to get through. I find myself getting annoyed with Noah because he takes on so much that it leaves little opportunity for set schedules, I find myself slipping into the bad habit of threatening loss of a baseball game or soccer game if this craziness continues..or worse yelling that we're late again at the top of my lungs. I wonder what will happen to him if he doesn't learn to say no and realize he has limits.
Maybe next year I should just keep him out of the extras so there's no choice but to focus on homework. Maybe I could not allow Ryan to do any of the other 74 things he wants because I'm afraid he wont do well in school next year. Then it hit me, that's ridiculous. I can't keep them from trying, even if it doesn't end well. I can't tell Noah not to run for student government because it might boil down to a popularity contest and if he doesn't win he will be upset. I can't control Ryan's every move to help keep the 74 other ideas from interfering with his reading.
Why is it any different with Lucas?
What's the worst thing that can happen? I give him my love, support, and encouragement and there may be obstacles - or walls - we need to work around or change direction, how is that any different from any other child?
I think the only person I need to try and manage is me, I need to realize that each son of mine is going to grow up and have a wonderful life - a life of their choosing. After all, Noah my decide to run for President someday, Ryan might be a wildly creative author, and Lucas, well - we'll just have to see which one of his gifts he'll decide to pursue.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment