By Maribeth Jahn

March/April 2006
Volume 24, Number 2

After bringing Emily home from the hospital I was inundated with a wealth of information about Down syndrome. I was given brochures, articles, and even books to read. Eventually I went to conferences offered by Down Syndrome Aim High. It was there that I learned more about “inclusion.” Unfortunately, I did not learn enough to prepare me for the reality of inclusion. The reality is that the road to inclusion is paved with good intentions and a lot of big boulders that take time to go around and are even harder to climb. So, if inclusion is the route you want to take, I suggest you take one step at a time and wear sturdy boots.

Emily started preschool at Helping Hands at the age of three. After a year and a half there, I decided to send Emily to a regular pre-school program as well as the “special” program. Emily’s long road to “inclusion” had begun. Public school here we come! The school district wanted Emily in a special education kindergarten class. I had a different plan. I wanted to continue the half and half program I started at the preschool level. My vision of educating Emily was not going to be the same as theirs. Inclusion was not in their vocabulary.  I think they just went along with me because they thought they could dissuade me later on when the talk of “failure to progress” would begin to rear its ugly head. Oops, do I dare mention the “P” word?  Ok – “I am sorry Mrs. Jahn, but we feel she has hit a plateau”.  “Plateau, plateau, whatever do you mean?”

So down the yellow brick road Emily and I went, with my husband trailing closely behind me. His job was to make sure I didn’t get out of control. Everything did not always go smoothly, but with my husband as the calming, reasonable voice, we made it through the inclusion maze. Elementary school was not perfect – some school years were better than others and some teachers way better than others. Perseverance and good planning paid off.  Emily actually began to read and write better and her math skills finally improved.

The transition to seventh grade has been rough. It appears that life skill classes are where the schools would like to place our kids once elementary school is over. For many special education students, however, learning doesn’t necessarily have to include learning to cook, shop, and make beds. All students in Junior High and High School learn life skills. They learn basic skills, personal skills, people skills and thinking skills. Students learn reading, writing, mathematics, speaking and listening. They learn to meet and make friends, and communicate their thoughts and feelings. They learn to work in teams, organize their stuff, manage their lives and take responsibility. They learn to move in and around in society. These are the “life skills” I want Emily to learn. These are the skills to take her into the working world.

Emily could learn to read, to write and to do math from the day she was born, she just needs more time to get it all straight in her head. She needs the curriculum modification and adaptations necessary for her to be successful. She may never read a great American novel, nor write it. She may never need social studies, science, and advanced math, but should we deny her the opportunity to try? Inclusion is so important, not only for what they learn but for what they might miss out on. It is my opinion that a self-contained life skills classroom will not give Emily the exposure to the ideas she encounters (but may not fully grasp) in an inclusive environment.

Inclusion is Emily learning to read good books, write letters to Granny and Grandpa, write some poems for her school literary magazine or newsletter, (eventually for the Down Syndrome Aim High newsletter). Inclusion is Emily going out to buy a soda and a slice of pizza with a friend and $10 and coming back with the correct change! Inclusion is having Emily stay in her classroom with her peers, learning all she can to prepare her for college, a job and living on her own.

After almost ten years of inclusion, what am I left with? I am left with a lesson learned. Inclusion is not all that I expected it to be. Inclusion is what you, the parent, make it. Inclusion is like a quilt;  Emily’s inclusion is breaking down what everyone is learning into pieces that will make her quilt – a quilt put together with patience, understanding and love – a quilt I started but will never finish. Successfully included, Emily will!