I guess it’s a normal part of motherhood, the second guessing, the awareness of my unawareness, the perfect perception that exists in hindsight.

But ok, before we discuss education, I have to acknowledge that I’m coming to the table much later than some others parents do. At a meeting last night about IEPs, there was a mother there whose child is 2yo. And Kepler is 11, which means she is 9 years ahead of me in addressing this.

You know, if I’d been able to do this when he was 2, I would have. And even though I know that, it still stings to be coming to this so late.

So, about education. Kepler (and all children with disabilities) is legally entitled to FAPE, which stands for Free Appropriate Public Education. Such a small acronym but it contains a bushel full of concepts and information, none of which I will elaborate on here.

The trickiest part of his education for me is that I am an educator who taught some of our kids anywhere from K to 12th grade. A real do-it-yourself-er. So I didn’t really learn how to navigate the public school system; what the expectations are from year to year, what changes happen as the student moves to the next building, what kind of responsibilities are placed on the student in each successive grade, how to handle the disparities that come up between the school setting and the individual child’s learning style or personality or anything having to do with the social experience of school.

Throw into the mix developmental delays and it’s quite a tangled web to find my way through.

The trick then is to discover the balance between me using my good ideas and homeschooling experience, and working within the system and availing myself of their experience and resources. This may be the first time I’m being faced with working collaboratively with a team.

My typical grade on “works well with others” is “N” for “needs improvement.” I might look unprepared! I may be judged by others! I might ask a dumb question! But what if it really is possible to give and receive in this process, imperfectly, knowing I will make mistakes along the way, but trusting myself and trusting the process. I feel a slight stirring of hope, of energy around the current process.

I can wish all I want that I already knew it all, but that sure seems like wasted energy. Instead, let me take the next baby step in learning and keep on learning how to advocate for this boy and his future.

I note my reaction to posts and fundraisers about other diagnoses. I don’t (can’t) read every piece about autism or Fragile X syndrome or Angelmans syndrome. I don’t even know exactly what they all are. There is only so much room in my brain for information, and there’s a lot to know about Ds. This reflection makes me realize that the rest of the world is not hanging out to know about Ds.

But pretty much all of us come into contact with people with Down syndrome, and we can all use a hand in understanding each other. So, let me tell you about Kepler, in case you meet him one of these days.

The social piece of Down syndrome

Kepler is the most (or at least tied for first with his sister) social member of our family. Everywhere we go people seem to know him. He becomes the connection for me with strangers and yet-to-be-friends. He cares about your facial expression, your interest in him, your desire for him to be a part of what you are doing. He loved helping our neighbor water his grass the other evening. He is careful and does the best job he can.

Kepler can be very easy to get along with, and he can also be tricky to get places with. He laughs from the depths of his being, and his determination is fierce. My job as his mom is to support and guide him in using that determination as a positive force, something that helps him become the best version of himself.

What You Can Do

Realize that every interaction you have with a person with Down syndrome is teaching them something. If you let Kepler stroke your hair or go in for an unasked-for hug, he is learning that it is ok to touch other people without their permission. Not much of an issue when he is little, but it becomes a BIG issue when he is bigger. Head him off at the pass by reaching out to shake his hand. Model for him what is appropriate, what you do when you come into contact with another adult or stranger. Tell him “Please ask before you hug.” Simple things with kindness.

The accommodative piece for Down syndrome

People who do not live with Ds sometimes think that the person with Ds must simply fit into the world’s expectations.  And while it is true that a person with Ds does have to get along with others and at some point do things the way their environment asks them to, those in his environment also must adjust to doing things more slowly, more deliberately and more times. This includes giving instructions, completing tasks, making transitions, and understanding how the person thinks about things. This delicate balance I am still learning to manage.

What You Can Do

Remember that behavior is always communication. Notice the context where it is happening. Who is there? What is happening right before and right after? Always allow extra time when working with a person with Down syndrome. The relaxed pace is better for everyone and truly gives the child/adolescent/adult the best chance to succeed.

Keep it Simple, Sweetie (The KISS method)

Yesterday, I online chatted with both Cincinnati Bell and Time Warner. Just a little thing in the course of a day. Many of us do similar things throughout the day. However, while I chatted, I also played basketball outside with Kepler, chased the ball, made sure I didn’t get disconnected on the chat, had the actual conversation, waited in line with Kepler, and told knock-knock jokes with him between chat comments. Doing all those things simultaneously is not ideal. It’s pretty stressful, actually.

Ideal would be leaving my phone in the house while I play basketball outside, and being prepared for every eventuality.  A motto of my family of origin was, “Make the most of every opportunity.” I think I have interpreted that to mean, “Do as much as possible at all times.” Those really aren’t the same, are they? Making the most of every opportunity means being present where I am, which happens to be wise advice for all of us, whatever our station in life.

What You Can Do

Consider abandoning multi-tasking, either altogether or for periods of time each day. I have noticed that when I provide half of my attention (or less), I get half as good (or less) behavior. Make sure you have his attention. Say his name and make sure he is listening before you give him an instruction. Recognize that simple instructions are best, and if you repeat them, use the same words. Even if you prefer variety, he thrives on routine, repetition and review.

What other suggestions do you have for helping someone with Down syndrome be as successful as they can be?

(Note: Yesterday, I alleged that today’s blog would be all about giving children a choice. Seems that my plans changed. I don’t mind if you Sioux me.)

Look, it’s been a day, and the only similar phrase I could think of was Concert for Bangladesh, which happened in 1971. I know there is a musical group called Bowling for Soup which sings at least one Phineas and Ferb song. But I can’t think of any other [VERBING] for [CAUSE] phrases at the moment.

The title is a bit tongue (and donut) in cheek, actually. But it’s not all that far from the truth.

You see, I’ve been working very diligently to perfect my stress eating techniques. I seem to be getting better at it all the time. It’s amazing how I can be driving down the road, heading straight for the drive-thru, and my the angel on my shoulder will be saying/singing, “Oh, YOOO-HOOOO, this is not a good idea? Sounds like something that rascal on the other shoulder thought up.”

And you can just bet that the rascal just smirks. Homer Simpson seemed like the logical choice for illustration because donuts.

Anyway. Stress lives. And food helps. That’s the kicker, that the eating actually does relieve the stress. Well, the initial stress anyhow.

All I can say is that I’m learning, people. Pretty darn slowly, most of the time, when it comes to this area. Glacially, pretty much. Although I must be doing something right because I do not yet have to iron my pants on the driveway. But, it’s not the best solution, by any means.

I love it when I write a blog post and think I’ve been extra helpful or witty or otherwise unforgettably readable. And then we have days like today when I use my blog as a confessional wherein I acknowledge there are some tasty thorns among the roses.

My plan is to be gentle with myself on the one hand, while smacking myself into shape with the other. Will that work? I will celebrate the hours (mostly while I sleep) which do not involve eating foods that are not taking care of me, and rue the minutes which do. I’m going to meditate 10 minutes a day, and during the other 1430 minutes try to hinder, interfere with, impede, hamper, obstruct, block, check, and/or curb my commitment to all things junk and avoid the self-driving-car-like motions of turning right into the parking lots of those places.

I’ll leave you with the incredibly deep words of my poem “Why Don’t Beets Taste Like Butter?”

Why don’t beets taste like butter

And why won’t sugar just drown itself?

And why can’t I, as a mother,

Leave those dog don* cookies on the shelf?

And why is all the broccoli so stinky,

And who makes the sweet-smelling bread?

Why is rest always over in a blinky,

And can you believe that sweet comfy bed?

I’m not a lazy lady,

No matter what I say.

My teeth and lips are especially busy

Getting me through each and every day.

So, today as you eat your perfect menu

Feel free to toss me a few good thoughts,

And today, yes, today, I WILL DO

What yesterday felt all for naught.

*dog don is Kepler’s version of “doggone [it]” and I simply am not going to ever correct that. It’s too dog don cute.

The night Kepler was born at home, his two older brothers (10 and 11 at the time) read him a book as they were getting to know him. Reading aloud has been the norm in our home since Valerie was a tiny baby 24 years ago.

Turns out, kids with Down syndrome are particularly receptive to reading personalized books. Books written about them, for them, on their level. You can imagine how this can wreak havoc, though, when they are being asked to read books about “Animal Noses and How They Smell,” and things like that. Those books have a place and I definitely want him to be able to choose to read any book he wants to read. It’s just that, and this is not an idea that is original to me, they learn best when there is some sort of context that is meaningful to them.

Oh The Humanity

One might think that having four kids who truly learned to read by being read to might clue one into the importance of reading to kid #5. Which we have, of course, but not nearly to the same extent as we did with the older four. The difference has been that we pretty much just read out loud every book we could get our hands on, and read to the older kids evening after evening after evening. All the way through the Lord of the Rings books, The Scarlet Pimpernel, The Count of Monte Cristo, The Three Musketeers, and so many more. Books that the kids didn’t necessarily have the vocabulary for yet, but learned so much just through listening to Greg reading the books to them.

With Kepler, I have focused more on easy readers. Until this past week. I had checked a chapter book (for him) out of the library and it had sat on the table for a good three weeks. For no particular reason, I decided to read it aloud.

He loved it.

Loved it! It’s one of a series about four kids in elementary school, and I think he really appreciated the sophistication of the story after sitting through five million readings of the Spot books. Not only did he love the book, he wanted me to re-read it. We read that book four times over spring break. And I love seeing how his brain makes connections between things we read and other places he has heard a word or a name.

The Method to the Madness

Now that I understand these two facts: personalized books, and higher-level material, I am so much more prepared to teach reading skills to him.

In tomorrow’s blog I will be expanding on the concept of giving him a choice, but that has come in handy with our reading aloud as well. Sometimes he tells me the book has too many words. Truly, he is not used to reading books with 60-70 pages, so I can understand that it might feel like a lot. However, I see him attending to and comprehending a lot of the story. But I still let him choose at times whether he would like for me to read one more chapter or two more chapters, two more pages or three more pages.

Having him home during Spring Break has given me a multitude of opportunities to experiment with teaching him in different ways. What I have discovered is a child who LOVES to learn and who is quite motivated to try hard when the material is connected to his life.

Vocabulary, Spoken Words, and Reading

And maybe the rest of the crowd already knew this, but I have just been learning about the connection between having a large enough vocabulary (800 words) to make reading an option.

Sue Buckley, of Down Syndrome Education (https://www.dseinternational.org/en-us/) shares the importance of actually writing down the words a child knows. With a typical child, they learn words so quickly, writing them down would grow exponentially on a weekly basis. But with Down syndrome, the child’s vocabulary grows at a slower pace, and certainly the expressive vocabulary can lag behind the understood vocabulary. So, it’s helpful to know what words my child actually knows; the ones he can read, the ones he can say, the ones he uses spontaneously, and the ones he speaks that can be understood by someone who does not know him.

Hearkening Back to College

I remember reading a book on language acquisition in children during my Developmental Psychology class. It was FASCINATING. And though Kepler may be acquiring language in a non-typical way, I am finding his process fascinating as well. And boy, am I glad I am along for the ride.