My son Mikey celebrating his 10th birthdy (January 2009).
I have an 11 year old son with Down syndrome and Autism (well he will actually be 12 tomorrow but I can cling on to the last dying days of 11 as I sruggle with how quickly he is growing up). He is one of the most determined children I have ever come across. He is full of personality - sometimes to the point that it gets him in trouble. In many ways he is a typical pre-teen as he spends hours a day playing his beloved Wii. We have had many struggles through school because he doesn't fit the mold of what many see as a student. Its a hard balance for me - being a mom to a child with this level of need and also teaching students with equal or greater needs. Mikey (my son) is now in my class.
Years ago I made a list of what I want Mikey to gain from his schooling. This list guides me as a parent and as a teacher. I actually want pretty much the same thing for all of my students as what I want for Mikey. There is nothing "academic" on the list. I do care about what he learns academically but just really feel that if we take care of the other stuff then Mikey will learn academically all that he is capable of - and that is what I want for him on the academic front.
I'm sharing my list becuase it might make it more clear why I feel that inclusion is important. Even though it would be more of a struggle for Mikey to be in an inclusive setting I think that there are more opportunties for htim to learn these skills. The problem then becomes ensuring that the teacher is focusing on these skills because if they aren't then inclusion for Mikey would actually be more harmful than good (as I said Mikey is determined and he also is very routine oriented so he can get stuck quickly). The trick is to find a way to switch the mindset. As I read about educational reform I come to realize though that switching the mindset is not exclusive to inclusion. If educational reformers can make change happen they are paving the path for inclusion to work because part of what people seem to want in educational reform is to start teaching students about social responsibility - and that pretty much is a large part of how I define inclusion.
Anyway... off my soap box and here is my list...
- Develop an appropriate and effective communicaiton system: Mikey currently speaks in single word approximations. He uses sign language and PECs and we are just starting to explore augmentative communication devises (better late than never). Right now he does a great job of communicating his wants and nees but I want for him to be able to communicate for a variety of other purposes.
- Reach the highest level of indepndence he is capable of: We are still in the stage of gaining independence in routines. I believe that this is a result of overemphasizing compliance in the past. As a result Mikey became extremely prompt dependendent. We are working backwards and emphasizing independence rather than compliance. Its a slow process but we will have many places to branch out once we get a better base in place.
- Develop appropriate and effective social interaction skills: there are skills that he needs to learn that will open up many doors in regards to being able to get around in our world. These skills do not come naturally to Mikey and we need to take the time to teach them (over and over again a lot of times). I do not believe that isolation is the best place for this learning to occur. I think for it to have meaning it has to taught in the middle of the messiness of authentic initiation, building and sustaining of real relationships. We need to get to a place where an adult is not needed to buffer interactions and relationships.
- Develop appropriate and effective self-advocacy skills: I belive this starts with self awareness and acceptance but that it is so much bigger than this. This is probably the most imporant skill that I want Mikey to walk away with at the end of his schooling. It is our biggest challenge in regards to how we make this happen in school because we will always be fighting against a system that focuses on compliance (particularly for people with disabilities it seems). A big part of this s that Mikey can walk away at the end of his schooling with some sort of "tool kit" related to adaptations and accomodations that he knows he will need in order to make his world work for him. This is really not much of a leap from teaching any child how they learn and how they can use that make their learning as effective and efficient as possible.
- Increase his ability to engage and remain engaged in tasks or activities until completion (in other words, gain the ability to attend and perservere): This is an area that is a real struggle for Mikey but its coming. One of the skills that many students have that Mikey lacks due to his disability is the ability to sit quietly bored. We can ignore this challenge when it comes to most students because they have that skill. With Mikey is much harder to ignore. Engagement is so important!