After Alex was born I actively sought out parents of older children with down syndrome. I read as much as I could and made what seemed like, millions of phone calls. I wanted to know exactly what Alex's life would be like - and what I, as a parent of a child with special needs, needed to do to prepare us for the world.
The parents I met were helpful and hopeful. The common theme was "treat her just like a normal child”. This turned out to be the best advice by far - I expect Alex to act and behave just like her sister and brother. Often she does not, but I expect it anyway.
As far as literature -I learned that any book that was copyrighted before 1990 was potentially suspect. I believe that in the 80's a silent revolution occurred in the research materials around down syndrome, as well as in the lives of children with special needs. Parents became actively involved in their children's education, the ADA (Americans with Disabilities Act) was passed in 1990 and children with special needs became more "mainstream”, think Chris Burke in "Sesame Street" and "Life Goes On".
This revolution did not happen by chance, and it is certainly not over - but is has changed our literature and our expectations. I am incredibly grateful for this - and will always do my part to carry this message of promise to the next group of parents.
At some point in the life of a child with special needs, an educator will do an IQ test. This is one of the dumbest indicators of anything I have ever come across. First of all, Alex does not perform on command – she sees no utility in random tests and usually does not cooperate. This does not bother me one bit – but it does produce the lowest IQ scores you can imagine. If I followed her IQ level she would be unable to perform the basic skills needed in life.
This has led me to preach – to the choir I am sure – that IQ tests mean nothing. Therefore, at this point in my journal I would like to share what Alex can and cannot do. These skills are based on ability - not desire - which I have learned are two entirely different things.
As of today at 16 years 4 months, 9 days, a couple of hours Alex can:
• Personal matters
- dress herself
- brush her teeth and hair
- attend to all personal matters i.e. showers, girl stuff
- Read and comprehend at a 3rd -4th grade level
- Add, subtract, multiply and divide at a 3rd -4th grade level
- Memorize her class schedule
- Navigate the busy hallways at school to get to all her classes on time
- Unlock her school and gym lockers
- Bring home oral messages from her teachers
- Participate in science labs, presentations etc..
- Basketball, soccer, tennis, softball
- Run, skip, hop and jump
- Horseback riding
- Ice skate (when she was younger)
- Express her needs and wants
- Clean her room/make her bed
- Do her laundry
- Prepare all her meals (microwave as needed)
- Count money
- Find her way home
- Stay home by herself
- Cross the street
- Recognize "stranger danger"
• Personal Matters (can’t think of any)
- Stay focused when she does not understand the subject matter
- Understand reading materials beyond 5th grade (she can read but not comprehend)
- Do algebra or geometry problems
- Ride a two wheeler bicycle
- Drive a car
- Take the public bus without supervision
- Monitor her food intake
I do not want to give the wrong impression. Alex is delayed in almost everything, for instance she did not dress herself until she was four, but she does it. She did not shower by herself until she was seven, but she does it now. I am so incredibly proud of all Alex has and will achieve in her life. She is so very extraordinary and we are very lucky to learn and grow with her.