Its amazing the strength and endurance a child with special needs must have in order to enjoy the simplest pleasures in life. This is not about feeling sorry for a child with special needs but instead bringing attention to those who may not understand. Who look at a child with special needs and wonder why they might be agitated, annoyed that they are having yet another tantrum, or feel that they just don't belong in a class or program because of their disability. This is not to say that a typically developing child has an easy life. That they are not tired also and try very hard every day but a child with special needs should be recognized for their determination and hard work to just enjoy day to day living.
I feel that I sit in a unique situation. I am not only raising you, a child with special needs, but also work with children with special needs on a daily basis. I see a wide range of children varying in ages and disabilities and the one thing you all have in common is that you put so much into life so you can enjoy certain moments. So that you can say your first word at any age, follow a one step direction, or do your first math problem. There are no predictions, no conclusions, and certainly, no promises. Everything has to be on your time and sometimes you do not even realize how great of an accomplishment it is.
I wish there was a way to explain to everyone just how hard you, and many others, work. Just what it takes to be in your head for a day, in your life, and walking in your shoes. Unfortunately, I do not even realize exactly what this is like but I see it in you, and many of the other children I encounter. You give me determination and remind me daily not to take for granted what comes so easily to all of us.
This week watching you at preschool and around many other children your age I realize where all of your delays are. Where we need to push to make up ground and where you are trying so hard to just fit in. I have come to a whole new level of acceptance and have grown with you this week on your new adventures.
Where most children have free time before preschool starts in the morning and can relax and watch cartoons, we are getting up early so you can learn how to dress yourself independently. Where as most children can relax and play with their friends before or after school you are either on your way from or on your way to another therapy session. On top of your 15 hour school week we also fit in another six hours of services such as speech, occupational therapy, physical therapy, and behavioral therapy. This does not include your home school program and one on on time that you and I spend working on skills also.
Nothing is ever just play. We are always working on language, requesting, sharing, imitation, etc... We are always trying to find teaching moments and pushing you to the next level. Your day is never ending. You are exhausted and you will be for a very long time. On top of this we still have to fit in aquatic therapy, doctors appointments, and swim lessons. We need to find activities that allow you to be more of a typical six year old but that is hard when to do those activities you will need even more work and practice.
You are extremely happy though. You never stop smiling and laughing (unless you are being counted... Bryson James... 1..2..) You can not imagine your life any other way and that you are growing and developing everyday. It is not fair that you have your disabilities, that some of these might have been prevented, but you would never know that looking at your face. You have taught me so much and I hate that fact that you have to work so hard to enjoy daily moments but these are moments that will never be forgotten.
I admire you and am so proud of you for all your accomplishments and hard work. You are an inspiration and model for others
Love you baby
Mom
P.S. Picture of you is sound asleep in the car at 8:30 in the morning after you OT appointment and on your way to preschool.
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