Friday, January 22, 2010

Wrapped Around His Finger

Calvin. He has the world at his command. The checker at Target barely brushed his head with the shopping bag as she put it in the cart. He, in a sour mood from too much shopping, sticks out his lip and says, "owie." Of course what happens next involves doting checkers covering his jacket in Toys Story stickers as he tells them exactly where to apply them, "here. right here." We leave the store as he hollers, "Bye Friends!"

Tuesday, January 19, 2010

That's my name, don't wear it out...

"Ki-um! Ki-um! Addy! Ki-um!"

This is the chatter we hear coming from downstairs in the morning. Well not the only chatter. We hear Calvin beckoning, "Bra-yur! Bra-yur!" His way of saying "brother," and the way he prefers to address Charlie.

Well, Charlie has some preferences too. And for the last few months he has been calling me by my first name. "Ki-um" as he says it.

Sure, it's cute, just like it was cute when he used to call Ray "Way" instead of daddy. If we were all shopping together, and Ray wondered to the next isle, you could hear Charlie's little voice ring throughout the store, "Way! Are You?!"

But, it has been months since he has called me "Mama" or "Mommy" (except for under diress--you know, such as getting an owie or being sat upon by one's bra-yur). Needless to say, the cuteness has worn off.

"No Charlie, I'm mama," I will say again and again. I even try to ignore his requests until he will address me as "mama" or "mommy." And I tell ya, the boy is stubborn!

Now, I'm sure when Charlie calls me "Ki-um" he does so with the utmost affection and admiration, but to me it feels like I'm being made a formality.

Today and lunch he had his brother calling me "Kim" as well.


Well, I am more stubborn than he,

and will maintain a creative patience in the matter,


he will call me Mama!
(So, if you have any creative ideas to help me, let me know!)

Saturday, January 9, 2010

My Boy is Four!


Look how big and strong you have grown! Can you believe that at this time four years ago your daddy and I were just getting ready to head home with out first son to begin our lives with you. What an exciting time!

In four years so much has happened. So much accomplished. So much learned.

You are amazing, son. We pray for you daily, and for ourselves that we will know how to guide and teach you as you make your way in this life. We love you so much, and we are so very proud of our big boy.


Wednesday, January 6, 2010

Not a Total Resolution, but a Start

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...

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.

Wordless Wednesday: Potty Training Attire


Monday, January 4, 2010

More Renegade Down Syndrome Parenting Thoughts

This thought is continued from Saturday's post, so if it seems incomplete, it is because it is. Read Saturday's post first, then this one. Then come back for more later this week when this line of thinking will hopefully have come full circle.

I was at a mother's get together (for mom's of kids with special needs) a few months ago. The organizer of the monthly meeting is a woman who is a retired special ed teacher. As we sat and talked that morning, she shared a story with me:

She shared a story about two local young men who both have Down Syndrome. One is an outgoing young man, not super high functioning, but an included part of the community. The other is a young man who was always considered to be fairly high functioning, but lives a very isolated adult life.

As a boy, one of the young men's parents had insisted their child be included in the local school system. He was mainstreamed all throughout school and expected to participate in his neighborhood school like his typical peers.

The other young man attended the special education school (the same school Charlie currently goes to 3 days a week). The school is pretty secluded, and there is no mainstreaming or reverse mainstreaming at all.

Can you guess which young man went to what school?

It may surprise you, like it did me. The young man who now lives an isolated life, uncomfortable being a regular part of the community, is the one who was mainstreamed.
My friend went on to explain that as a child he was quite high functioning, and is still a bright young man, but he was very isolated in his school environment. His isolation and subsequent poor coping abilities affect him today. His parents myopically insisted that he be mainstreamed. Insisted that he be given every opportunity to be a "normal" kid. The problem was the mainstream school was not set-up to support his needs socially, and he was always behind his peers academically. He had little in the way of true friendship. He may have been a part of the "regular" community by attending the mainstream school, but he was not armed for success.

The young man who is not considered high functioning attended a school that serves people with disabilities exclusively. He was nurtured in a environment that supported his specific needs. Every staff person who ever worked with him had special training in how to support him socially, academically, and so on. He blossomed among adults and peers who accepted him just for who he was. His parents, by choosing the setting that was designed specifically for their son, never had to convince anybody of his capability or worth. He grew in confidence of himself and gained specific skills that help him to get by in the daily things of life on his own. Academically he is not as accomplished as his mainstreamed counterpart, but he is better able to care for himself with the skill set he learned. He has more confidence about his capability and belonging in the community.

As my friend told me the stories of these two young men, I wasn't sure where she was going to take the story in relation to Charlie. After all, Charlie goes to a mainstreamed preschool and the special ed school. Well, she ended by commending Ray and I for choosing the program we did. She said she thought it was a good choice to have Charlie at the special ed school to receive intensive training geared toward his specific needs, and to have him at the typical school to encourage him socially with typically developing students.

That aside, her story really made me think about some things.

I thought about that resolute decision that Ray and I felt Charlie should be included as a part of the community. That he should not be segregated based on his ability or diagnosis. The frustration that we have felt because the programs for kids with severe special needs in our community are based at a totally segregated setting, instead of the neighborhood schools. The uncertainty as we look toward Kindergarten and wonder where we will have Charlie attend: Our local school will have little expertise or set-up for his specific needs; the special ed only school has no opportunity for a mainstreamed experience.

Before Charlie started preschool, before his first IEP, I had visions of calling in the big guns at IEP meetings to convince the school district that the way of doing things in this county is antiquated. That kids with special needs deserve to be a regular part of the community, and that kids without special needs deserve to know a little diversity. I would mull over just how I would tell the district that they should better be prepared for my son to attend his neighborhood school along with his brother, because that's where we would be showing up on Monday.

Now, the set up in this county is one thing that I could discuss, because I DO think it is a bit antiquated. I think when the special ed school was established it was absolutely cutting edge to even have a place for children with special needs to be educated. I just think that now-a-days the local schools should be able to accomplish the education of kids like Charlie, who have significant disabilities but are still pretty sharp cookies, in house. I think it would be more in line with the heart and soul of the IDEA act if that happened. But I'm getting side tracked here...


Oh, Charlie. He is a piece of my heart, and listening to the stories of the two young men, my eyes began to wander away from the next IEP meeting, and toward Charlie's future. What we want for Charlie more than anything is for him to be able to take care of himself. We want him to have true friendships, and to never feel lonely. We want him to feel safe and secure. We want him to be able to have as much independence as possible, and participate in the community through work and leisure.

What I don't want for him is for his mom and dad to make him a martyr in the cause of special needs parents who want to feel like their kids are seen as "normal". (Which I am not dissing by the way, because that is a very real thing that us parents of kids with special needs face. That piercing pain in the side when we realize that other people just are not "getting it" when it comes to our children, who we rightly behold as amazing.) And, I don't want to send him into a situation that is not set-up for him, just because, really, it should be set-up for him.

So what do we do?

That's enough for now. More later.

Saturday, January 2, 2010

A post not at all about potty training...

Note: This post is a part of an unfinished thought. I guess you could say it is Part One of a larger idea. More to come later.

It seems to me there are two extremes in parenting: A parent who parents with utter confidence that they know what is best for their child and goes about orchestrating that belief in the life of their family and children, ignoring other philosophies along the way. The benefit: Not having to deal with guilt as you make parenting choices for your child, and staying true to your core beliefs. The down side: The possibility you are wrong and might really screw things up.

The other extreme would be the parent who waffles about what is best. Who hears every advice and critic, and makes parenting choices based on the arguments of others and the voices that come through the loudest. The benefit: Drawing on the wisdom of others. The down side: Never feeling confident that you are choosing what is right. Never blocking out the outside influence long enough to know what your core beliefs are.

Of course, we all probably hover between these two extremes in our level of parental confidence and choice making. In fact, we probably all slide up and down the scale when it comes to different aspects of parenting our children, or even child to child. Maybe we start off our parenting journey at one end, and travel slowly to the other as time wears on.


Calvin is a boy who, I am confident will find his way in life. My job: To train him up in the way he should go, so when he is a man he will not part from it. It seems to me that whether we home school, public school, or anything in between, if we take the time to nurture his unique character, to give him a firm foundation of truth and goodness and compassion, and give him a philosophy of history that he can base his understanding on, he will do well. So, we guide him day to day in consistent and compassionate ways to teach him the way, to make sure he understands the path. We keep a keen eye on his gifts and talents and encourage him in the ways that he struggles. It seems almost too easy, but we go about it with fear and trembling as we know our wisdom is not infinite. We learn as we go along. We listen to the heart of our Lord. We pray for wisdom daily.


Charlie is a boy who, when I hold him in my arms after he has fallen to sleep, I pray that we are making the right choices for him. When our doctor called to confirm a Down Syndrome diagnosis when he was 10 weeks old, I said, "Okay. So what do we do now?" Truth be told, I don't know exactly what I was asking, but the doctor's words to me were, "Just keep doing what you've been doing."

It was great advice, and from that moment on our goal was to treat Charlie just as we would had he not had Down Syndrome. Our goal was for him to be a regular part of the community. To be included. Sure, he is special, but he is also just a regular part of who we all are.

Well, that idea is fine in theory, but truth is we had no idea how to treat a 'regular' baby. We had never had a baby before, and here Charlie was, hearing impaired, floppy as a rag doll, falling behind cognitively more and more with each passing month, doing very few of the same things the children of our friends were doing.

Then there was the team of people who, for all practical purposes, were helping us to raise him. The itinerant teacher who came to the house every Tuesday, the Occupational Therapist on Wednesday, the Speech Therapist on Thursday, the Speech and Language Pathologist on Thursday afternoon. There was the audiologist, the ENT, the Regional Center services coordinator, the dental hygenist that made home visits, the eye doctor, the regular doctor. After a while it started to feel like Ray and I had very little input on how to raise Charlie. In part, we were soaking up the advise we were getting like sponges, because honestly we were scared. Partly because we had so much "home work" to do in between therapy appointments. His success or failure was up to us.

And, though we have gained confidence, and though, through our self education, we have come to know more about Down Syndrome than many of the professionals in our lives, and though we feel like we've become experts on Charlie as an individual apart from his diagnosis, we often feel more like consultants than parents when in comes to the whole "Charlie Package." You know, the Grand Plan comprised of IEP's, IPP's, therapies, treatments, and education, and the sheer dollar amount being invested in him to turn him from helpless child to contributing adult. It is both comforting and daunting, helpful and intrusive.

So, when I hold him in my arms and listen to his little raspy breaths I wonder, "Is all of this busyness what we would be doing for him if we didn't have all the background voices telling us how to raise him to manhood?"

(More thoughts to come later...)
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