Shades of a Smile

There is something about people with Down syndrome that make strangers smile.

There are the warm, friendly smiles. These are those who have an acquaintance with Ds or have a positive image of people with Ds.

Then there are the he’s-so-darn-adorable smiles—just because he is and it makes you smile.

There are smiles of sympathy (those are where they look at Wil with concern, then the smile appears when they look up at me and there’s a sadness in their eyes).

Then, my absolute favorite, is the knowing smile. They look at Wil a little longer, and this far off smile appears on their face. You can feel the connection. Then they look up at me like we know each other—their smile says “I know you even though we haven’t met yet.” Sometimes they will share with me about the person they love with Ds. Sometimes they won’t. Either way I know they love somebody with Down syndrome. It’s a beautiful connection, if only through a smile.


Ugh, Mom! Entering Puberty with Down Syndrome

F5450D9B-B30D-4378-B101-FF9D350C65CDWil is closing in on 13 years old. His birthday is just over a month away. His voice is getting deeper, he is growing by the day, and his appetite is hearty–as I type this he is eating two ham and cheese sandwiches for breakfast. He’s a huge Luke Bryan fan and knows every word to every one of his songs (I have to remind him not to use country favorite words like “beer” at school). He’s also feeling the urges that 13-year-old boys feel. Wil can get fixated on certain girls. He is affectionate by nature, but now that he is going through puberty he is starting to hug too hard and too long. We are working on boundaries, but are not there yet. It’s been quite a challenge. When it gets to a point that I need to separate him, he feels sad, hurt and upset. He’ll flee the scene and then it becomes a safety issue. We are definitely entering a new era with Wil that I need an education in.

I found some helpful podcasts in searching the web. I’ve also talked to some friends in our Down syndrome support group. There is no one concrete answer. Just like anything with our kids, what works one day may very well not work the next. The fact that there is always a lot of learning along the way is nothing new. But what I’m learning is very new to me. With Katherine and Elizabeth, we talked about their changing bodies in just a few conversations. We went through some American Girl books, and they also had health education at school. When they offered this in Wil’s grade, I opted him out because it would have fully confused him. Though puberty is a very natural part of growing up, Wil’s body is ahead of his understanding. I was completely blind to how complicated this would be.

When Wil was a baby, I had so many big questions on how to explain he had Down syndrome to his sisters. It was a complicated situation as the twins are only 20 months older than Wil. I didn’t want them to overhear this from someone else and be confused and or hurt. I wanted them to know all of the facts. And yet, they were so young. Whenever I tried to give them an explanation, it went right over their heads. So, I searched the web for answers. I watched podcasts. I talked to friends in our support group. It was clear that what worked for one person did not always work for another. It’s a day-to-day, very individualist type of answer that you learn over time.

I bought the book called “Let’s Paint the Octopus Red” and the girls and I read it multiple times. They enjoyed the book but never put together the connection with their brother. Though it is a great book, and I recommend it to this day, Katherine and Elizabeth saw Wil as Wil. He just did what he did and there was no reason to question why. Until one summer day, shortly after Katherine and Elizabeth had completed Kindergarten.

We went to pick up Wil at the school. As we were walking across the parking lot, Elizabeth asked, “Mom, why is Wil in school now? I didn’t have school the summer before Kindergarten.”

I explained Wil needed a little extra help to do certain things so that’s why he needed more schooling. That was all she needed. After I said that, she was satisfied and had already moved on to something else. The time had arrived on its own. When Elizabeth reached a stage where she could compare her progress with Wil’s, she began to see his differences. I have no idea if any of the reading or explaining I did before had made any difference, but I did learn one big thing. No matter how prepared you are, you can’t force time. Your preparation will make you ready when the time does come, but some things must unfold in their own way.

So now, I’m reading some of the puberty books with Wil. I’m listening to certain podcasts on the web. I’m hoping some of it is sinking in. But there is no single answer as how to handle this. I’m taking it day by day. Piece by piece. Some situations are easy to give time. But some are not, such as situations where Wil becomes fixated. He doesn’t understand his feelings and he is simply reacting to them. Like most of the things Wil learns, it takes lots and lots of repetition. Then one day, seemingly out of nowhere, it all sinks in, he gets it, and we are moving on. But right now we are in the middle, so I’m taking lots of deep breaths and being prepared to leave certain situations early.

The other day, I was having a discussion with him on what is done in private and what is done in public. He looked at the picture in the book, then he looked up at me and said, “Ugh, Mom!” Then we both started cracking up. This may be a slow, unfolding learning process, but leave it to Wil to some it up in 2 words.


A Breath of Fresh Air at the Special Olympics

When you go to a Special Olympics event, there are some participants who talk to themselves, there are some participants who decide they are done and sit right down on the spot, there are some participants who decide to break out in song, there are some participants who spin in circles, there are some participants who hold things for comfort, there are some participants that go around talking to everyone they see, and the list goes on.  And there is always a volunteer to support them.

Most of these participants live in a world not made for them. They are constantly learning to function in that world. This takes a lot of work on a daily basis for both them and their caregivers. The Special Olympics and other such events for our kids is a breath of fresh air. Our kids have the opportunity to learn, grow, showcase their talents, all while being exactly who they are. To an outsider looking in, this scene may look strange, but to us it’s downright refreshing. Everyone “gets it.” We get to take a step back, to not always be on guard of where our kids may run off to, when they may shut down, or how they may fall apart. Our kids can be themselves without judgement and without reservation in a world designed for them to do just that.

We  the Special Olympics!!


Hoppin’ FRIDAY!

This morning when I woke Wil up, he was very sluggish.

“Hey, buddy, time to wake up,” I said. I sat on the edge of his bed and gave him little, light tickles under his chin.

“Hmmph!” He turned his face into his pillow and commenced fake snoring.

“Oh, Wil, I almost forgot. It’s your favorite day of the week today. It’s Monday!” Then I gave him a very cheerful, “Happy Monday, Wil!”

He turned his head, opened his clenched-shut eyes and looked up at me.

“Ugh, Mom. It’s Friday!”

“Hmmm, no, I’m pretty sure it’s Monday today. Let’s go Monday!”

<bolts upright in bed> “Mom! It’s Friday!”

“Ok, ok. You are right. I guess it’s Friday. Ho-hum. Time to get dressed now.”

“Hugs, Mom.”

“Yes, we can’t forget our hugs. <lots of hugs> Ok, let’s get up and dressed and ready for our Monday.”

“Oh, Moooooom.”

Later that morning as I was driving the kids to school, Elizabeth said, “So Wil, what’s for lunch on Mondays?”

“It’s FRIDAY!” Wil replied.

“Oh, it is? Phew, I thought it was Monday.” Elizabeth said.

Then as they exited the car at school, Elizabeth said to me, “Have a great Monday, Mom!”

“You too, Elizabeth!”

“Sheeesh, you guys. It’s FRIDAY! Let’s go Friday!” Wil laughed and took off running to the school.

A sluggish start can easily turn into a tough day. He loves being silly and sometimes a little silly reverse psychology does the trick—and bonus being silly makes my day better too. Who couldn’t use a little silliness to lighten the load? Here’s to a hopping good FRIDAY!


I Am Not Grateful

I Am Not Grateful:
I was not grateful when I learned Wil had Down syndrome.
I am not grateful my marriage was challenged by our differing timetables of acceptance.
I am not grateful my relationships with certain teachers has been strained by differing ideas of how to approach Wil’s behaviors.
I am not grateful that I’m entering an area of hormones, girlfriends and widening gaps in Wil’s peer group.
I am not grateful for the stereotypes and ignorance my son must hear, see and experience.
I do cry. I do get angry. I do get frustrated. I do things I regret. I am not grateful for these things.
I am grateful for a deeper level of acceptance I would not have known if Wil didn’t have Down syndrome.
I am grateful my husband and I now share a deeper bond and respect for the challenges we worked through.
I am grateful that each day, month and year I learn more about special education laws, advocacy and that we are all human and make mistakes.
I am grateful for 2nd chances.
I am grateful that I have come to know a strong group of proactive parents I can laugh with and learn from. I am grateful to call these strong, forward-thinking and compassionate people my friends.
I am grateful my eyes have been opened to a new life I would not have otherwise known.
I am grateful for the growing opportunities so my son may have a fulfilling life for the whole of who he is.
I am grateful I can contribute to this growth.
I do smile. I do rejoice. I do feel joy. I do things I am proud of. I am grateful for these things.
I am grateful my gratitude runs deeper for the times I am not. CC83539D-6FC0-4E20-935C-4C9ED8CB31EF.jpeg


Behavior Plans: It’s more about riding the tide than striking gold

This morning Wil’s team and I had a follow-up meeting on his behavior plan. Wil has had bumps in the road before, but this is the first time we have needed a behavior plan. The mix of hormones (he’ll be 13-years-old in February) and the growing communication and processing gaps between Wil and his typical peers has necessitated this advancement to a behavior plan.

Wil’s resource room teacher, paraprofessional, teacher consultant, social worker and speech therapist were all present at this morning’s meeting. After the initial pleasantries, we got down to business. We created the initial behavior plan about a month ago. This meeting was to discern what aspects of the plan were working, what areas of the plan required more detail, and any other areas of the plan needed to be re-mapped or removed.

As a whole, the initial behavior plan that was put into place is working. Of course, we would need more time, but at this point, we were going to continue with the plan with some added details. I can’t say exactly when, but at some point during the meeting I was overwhelmed with the thought that we were all sitting together, in this room, for Wil. Yes, it is a statement of the obvious. But if you really think about that fact in and of itself, it’s powerful. Surely, you can poke holes in any program or process. But I thought of my mom’s friend’s son. He is my age and has Down syndrome. There was no such team for him.

It’s hard to believe, at one time, these rights for Wil did not exist. Wil’s rights are protected under IDEA. IDEA was first known as the Education of Handicapped Children Act, but even that did not pass until 1975. That’s really not so long ago. My mom’s friends son was born before this act passed. Bringing her son home from the hospital without institutionalizing him was a highly progressive choice at that time. Most parents at that time, upon learning their child had Down syndrome, were told their child would be a burden to the entire the family—their marriage would surely be strained, siblings would suffer, and the child would not be able to talk, read or write, maybe not even walk. Their child would never leave home. Institutionalizing their child was surely the most humane choice for all involved. My mom’s friend was a pioneer in the fact alone that she chose to take her child home to raise.

These laws are powerful, but as powerful as they are, we are all humans with our own emotions and own ideas working within the guidelines of the laws. Two weeks ago I was not able to step back and appreciate the whole of that very fact. Wil’s behaviors had escalated and I was receiving almost daily calls from the school. Getting Wil out of bed every morning was at least a half an hour process, and it was becoming a given that he would completely shut down every day at lunch time. Whether Wil would get on the bus or not was the question of the day. The tension within me was building as this continued day-after-day-after-day. I knew Wil was hurting inside, and his team and I were not able to crack his code. To ask me to step back and appreciate the whole would have been beyond my emotional capabilities at that time.

Fortunately, I realized this that I was at an emotional breaking point. I knew I was in an emotional place where I could only see one step in front of me and I may be missing a lot of clues that someone from the outside looking in could see. I called Wil’s teacher consultant. She has known Wil since he was in preschool. She also sat in on his IEP and behavior plan meeting. However, she does not work with him on a day-to-day basis. And, she has a vast knowledge of behaviors and how to work with behaviors. When I called her I told her where I was emotionally. That I could be missing critical pieces because I could not see outside of where I was. I asked if she could help give me a broader lens. She immediately put me at ease, validated my concerns and also helped educate me in these new areas I was navigating with Wil. It was a turning point for me.

The tides began to turn. Wil’s behaviors started to fall in line with the plan. We have not struck gold, though it feels like it right now. There is no perfect plan. But there is a plan that works right now, and this is that plan. After the last few weeks, I will revel in every day, or even if it is hours, that this plan works. There is no real cracking of the code. But there is always a new discovery. And that discovery takes us two leaps forward after so many backward steps. And this team is taking those steps right along with Wil no matter which direction they go in.

Sitting at the table with Wil’s team this morning I was able to appreciate that very fact. The fact that Wil is doing well with this behavior plan. The fact that Wil is getting out of bed easily in the mornings, taking the bus home and not objecting to homework. Wil did have a rough day the Monday after Thanksgiving break, and with the holidays coming up, the variances in schedule will likely cause more bumps in the road. And we know the full moon causes waves in behavior too, not just the tide. This behavior plan is still, and will continue to be a day-to-day process, with many tweaks and turns along the way. But, while we are riding a good spell, I am taking advantage of the wide lensed view.

Each day, month and year I learn more. More about the law. More about human behavior–first and foremost mine! I’m not in a place where I can appreciate the big picture when times are tough. The many detailed pieces that go into the days when Wil is having a rough spell pile up to a level of patience I’m not always sure I have. But would I ever call it a burden? Not for one hot second. I will always be Wil’s first and biggest advocate. And though myself and every person on Wil’s team has our emotional breaking points, we are together for one purpose–the success of Wil Taylor. This is a team of people who love him, people who support him, and want the very best for him. They believe in his future and in his potential. Not because a law says so, but because they care. Today I will focus on that fact. Today I will gather all that I have learned from these past weeks. When the time comes again that I can not see past my next step, I’ll be a little bit stronger, a little bit smarter, and know that though I can’t see it now, there will be a clearing of the clouds. There will again be a time just like this, that I can sit with Wil’s team and feel the deep gravity and gratitude of the moment.