Part Three. You might check out the previous posts, Part 1 and Part 2, that began this long, meandering thought on parenting a child with Down Syndrome.
As Ray and I were thrust into the world of Early Intervention we faced it with a sense of relief and apprehension. Relief that we had access to a host of therapies and interventions for Charlie that we would not have been able to swing financially on our own. Relief that we had the collective wisdom of a team of people who loved their jobs and loved kids with special needs (and loved Charlie, too).
The apprehension came from the sheer amount of choices now laid before us. The cache of new information. The budgets and bottom lines of agencies who both offer invaluable services and withhold them at the same time. The "Charlie Package" part of our parenting job. The part of parenting a child with special needs that is very public and institutional and political and dollar driven. The part where I became more than a mom, but a researcher, therapist, secretary, specialist, and advocate. All this while trying to figure out what it meant to even be a parent, no less a parent of a child with Down Syndrome.
Now, I can very honestly say there is nothing so public about parenting Calvin. We spend long hours discussing our youngest child. Discussing his struggles and how to address them, talking about his strengths and how to encourage them. But, it is all done on very intimate terms, at the dinner table or in the car, just Ray and I. There are no deadlines. There are no outside opinions. No six month reviews. There are no stipulations, bottom lines, either/or choices. No one is telling us that we are not choosing in the best interest of our child should we take one option over another. It is very organic, unorganized, undocumented. You get the point.
The "Charlie Package" (which is just what I call it, in real life it is his IEP and IPP) is a plan how to support Charlie with appropriate services in hopes to minimize the risk of falling behind, and by spending money on him now ultimately decrease the number of dollars in special care and support he will need throughout his adult life. This is what Early Intervention and Special Education are in a nutshell. I think what I did not realize early on is that, while the two components of EI/SE and regular ol' parenting appear to go hand in hand, in some ways they are opposing forces. One is personal, tied to family values, needs, dynamics, and traditions. The other is institutional, run by amazing, caring people who are offering what they have to give and what they have available. It is regulated by law and intended to minimize the impact that people with disabilities will have on society over their lifetime. For us, a combination of our fears of the future and the panacea of EI lead us to put other aspects of parenting, bonding, and family values on the back-burner. In a way, I feel like we've put Charlie's needs as a 4 year old boy aside, and thrust him into the world in hopes of minimizing Down Syndrome. Maybe even in hopes of making him "regular" enough to attend a community school.
Mean time, there is my boy. There is my sweet boy, and there is my family. A family overwhelmed by therapy, two different school programs, the pressure of making a small boy into a Down Syndrome Super Star. A boy who is so gracefully going along with it all, because he knows not a relaxed schedule. A mom who feels less able to connect with her boy the more he is gone during the week. A relationship strained with complexity, contracts, and two parents who feel like they need to fight to get what their child deserves while not knowing how to balance that with the needs of our family.
I'm afraid these thoughts and contemplations do not have a clear resolution. If I am honest, I did not quite know where I would end up when I started. But here are two things I've considered:
First, on the continuum of parenting we have become less ridged and myopic in the way we view Charlie's education and the entire "Charlie Package". We began the special education journey with the idea that mainstreaming was the way to go for us if there was ever a hope for Charlie to learn how to fit-in to the local community. Conversely, we felt that to send him to the special ed school would be a hopeless mistake with the lack of a typical student population.
Somehow the stories and wisdom of others have penetrated that shell and allowed us to step back and take a long look at our sweet boy and wonder, "Where will this child learn best? Where will he find true friendship? In what environment will he grow in self confidence and independence?" We started considering Charlie's unique personality and personhood, not just his potential.
And two, we have grown tired of our hesitance to decide what is best for our family in the face of Down Syndrome. It is time to sit down and do a little parenting review. Which school plan is going to work for our family as a whole? What do we need to forgo to preserve sanity? How do we need to change things to promote togetherness and unity? How can we, finally, integrate Down Syndrome into our family culture, and not our family culture into Down Syndrome. After all, that is what inclusion and community involvement will ultimately be for Charlie. It will be him finding a spot in the world where he fits in comfortably and is loved. He may need assistance, he may not, but you can betcha his family will be there to lend support and cheer him on.
And so we have softened to the idea that fighting for a spot in the neighborhood school might just be too much for us, or for our tender, quiet boy.
And so we have accepted the idea that full time at the special ed school will be acceptable, even desirable, if that is the place where Charlie will continue to unfold into a responsible, caring, confident person.
We've added options to the table we'd never really thought a possibility for us before. This includes homeschooling with a co-op of other families where Ray and I can facilitate opportunities for community involvement while giving both boys a personalized education. It includes relocating closer to an appropriate school for Charlie, so we can have him in our daily lives to a greater extent, than miss out on the hours it takes to bus him back and forth.
Basically, we are totally undecided about the future, and really, when you have a child who has special needs, that is what "normal" is. It is what scares us, and also what helps us parent creatively day to day as needs change, problems arise, milestones are mastered.
And this time, we will make choices as a family. And, it is a great family. The best kind of place for a boy to grow, find his place, and learn about the big, big world. It is a truer kind of advocacy. At least I think so.