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Wil 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.

 

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.

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.

 

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.

He got on the bus after school today. That is a very simple statement.
There is no way for you to know the hours, the communications and miscommunications, the collaboration, the deliberations, and for this Mom, the tears behind his steps onto the school bus. A sign of getting on the bus is a sign of a good day. Not a perfect day, but a day where the redirects worked. Where the stops were started again.
Winning doesn’t always come with a medal around our necks and cheering crowds. Winning our day looks ordinary to most. I can’t tell you what tomorrow will bring. But I can assure you, those steps he took up to the bus today were steps of victory. These are the smiles of champions! 🥇🏆

(Wil and his paraprofessional, Kristi)

Today Wil had a good day. I’m not sure how tomorrow will be, but a good day today is enough to get me to tomorrow. Let’s take this thing day-by-day-by-day.

There is an analogy that no one can walk up to a grown elephant and have the strength to pick him up. However, if you begin by lifting the elephant in its infancy, and lift the elephant each day, you will grow stronger as the elephant grows. One day you will find yourself lifting a grown elephant. In these last few weeks, I feel not as if I’ve been lifting an infant elephant; rather the infant elephant decided to sit itself right on my stomach. I felt the slight shift of his infant weight, carrying on as usual. Then, day-by-day, his weight became almost in-perceptively heavier. Until, one day, I felt like I was dragging around and wondered what the heck just happened.

As I’ve mentioned recently, Wil has been having some trouble at school. He started the school year like a Rockstar. Popping out of bed, going to all his classes, taking the bus home. Shazam!! The twins were cranking out their first year of high school. I was able to coach more classes with the extra time Wil taking the bus home afforded me. We were all on a roll!

Then the stubbornness started to creep in. Some days were good days. Wil breezed through the day, with a few halts, doing most of his work, getting on the bus to come home and telling me about his day. Some days had stops and starts. Wil refusing to do his reading. But then after some time agreeing to another task. Some days came to an abrupt halt. Wil sat on the stairwell and refused to get on the bus. I needed to come and pick him up. I’d go to work with knots in my stomach. Would I get a call that he wouldn’t get on the bus? How would I pick him up if I was in the middle of coaching a class?

I make sure our mornings at home are upbeat to get him off to a strong start. Some days take more patience than I think I have. He refuses to get out of bed. We have lots and lots of hugs. Then all is good. Other days he jumps out of bed ready to go. I never quite know. The elephant grows.

Almost every day now Wil is not cooperating. Wil refuses the bus. A good friend is picking Wil up from school tomorrow. I’ve made changes in my afternoon coaching schedule. It takes a village and I’m thankful to have one. But still, the elephant grows.

Not knowing how his day is going to go, and not quite sure what the right tools are to handle it have, over time, day after day, fed this particular elephant.

I just read a quote that said joy does not bring gratitude. Rather, gratitude brings joy. I believe that to be true. Because really, I could paint a big joyful rainbow on this elephant sitting on me. I could say, look how pretty he looks! I’m making the best of it! But his growing red-orange-yellow-green-blue-purple colored butt would still be weighing me down.

I know others have heavier elephants. And I know we will figure this out. But sometimes it’s plain cathartic to yell out the simple truth: Dammit this is hard!

But this is my favorite part of life—-the little spontaneous things that happen. Seemingly inconsequential things that give you just the right leverage right when you need it. Just the right wedge under the elephant to lighten the load.

Today, the back of my car was full of thank you letter and packages for our Buddy Walk sponsors. It was more than I could carry into the post office in one load. A man with a Vietnam Veterans hat on walked over to me and said, “Do you want a little help?”
“Yes, thank you!”
“I’m retired, so I have the time. But in return,” as he eyed all of the mailings, “you have to let me get in line in front of you.”
“You have a deal.”

I was at the post office long enough to overhear multiple conversations. People sending packages to loved ones. Another woman who took in a sickly dog that lived 15 years. She was mailing photos to the place she bought him from. They had kept in touch over the years. I drove home feeling a little lighter for my gratitude.

Wil’s team at school has been working hard to find motivators for Wil. They set him up for success every day. I’m thankful for that, more than I can express. I walk into his goal setting meetings not ready for a fight, sadly as some parents must do, but ready to talk as a team. That is some major gratitude leverage.

And today, when I picked Wil up from school, he was full of energy. It was so good to see him end the day on a high note.

Driving home, Wil picked up my phone, turned on Amazon Music, and pulled up his favorite country singer, Luke Bryan. He played Luke’s song, “Rain is a good thing” and started to sing with Luke at the top of his lungs. When Wil looked out the window, he changed the word “rain” to “snow.”

Wil sang, “Where I come from, snow is a good thiiiiiiiing! Oh yeah!”

I guess elephants don’t like the snow, because that big guy got up and ran.

Wil has had a tough few days. Sometimes I can find the trigger, sometimes I can’t. Thursday I know what the trigger was. 

In an unsual set of circumstances, I worked late Wednesday night and early Thursday morning. This meant I did not put Wil to bed nor wake him up the next morning. Two mornings a week Katherine and Elizabeth wake Wil up and help him get ready for school. I arrive home just in time to take them to school. Most of the time this works out great. But, like all of us, some mornings for any number of reasons are harder or easier than others. 

I prepared Wil for my being gone Wednesday night and Thursday morning. I told him I’d come in his room when I got home from work to give him a hug, and that his sisters would be there in the morning. He said ok. However, when I returned from work Thursday morning I could tell it was going to be tough. And it was. He had a stubborn day and refused to get on the bus.

Yesterday was a stubborn day too. I’m not sure why that was. But it was. To prevent another stubborn day, this morning I woke him up 10 minutes early. I always lay down with him in the morning –other than the mornings his sisters wake him up– and we take about 10 minutes to laugh, giggle and he asks for lots of hugs. So today, by waking him up 10 minutes early, that means we spent 20 minutes of laughs, giggles and hugs. He got out of bed and was singing all morning. “Happy, Happy, Joy, Joy, Happy, Happy, Joy!” He ate a turkey burger (he’s definitey a dinner for breakfast kind of guy). Then when I heated up some egg casserole for myself that we had made the night before, he stole that from me and ate it too! 

There are many stops and starts in our days. Even with homework last night. We did it in pieces, as fortunately we had the time to do last night. He was humming along through the questions until he was in the process of writing out the word “P-r-e-s-i-d-e-n-t.” When he got to the “d” he wrote a “t” instead.
“Oh, Wil, hold on, that’s supposed to be a “d.” Presi DDD ent.”
“No, T. Presitent.”
“It can sound like a “t” but it is a “d.’ Presi DDDent.”
“No, T.” 
Pencil down. Arms crossed.

Fortunately there was time to burn in the evening and we only had a few questions left to answer.
“Hey Buddy, how about we take a break. You’ve done an amazing job getting through this. Let’s finish after dinner.”
“Ok, Mom.”

I never quite know how “after dinner” will go. So after dinner, “Wil, how about we finish those last few questions?”
“Ok, Mom!” 
<sigh of relief>
We breezed through them and then I said, “Ok, pajama time and then some free time before bed.”
“Ok, Mom!”
<Yes!>

Just like any 12-year-old boy, Wil is dealing with hormonal changes. His mood can shift with the wind. One moment he’s happy-go-lucky and the next his heels are stuck in the ground until he is good and ready. He’s typical in so many ways, and yet he is not. This world is made for those of us with 46 chromosomes as differing as we are. It moves at a whirlwind pace for Wil and it keeps getting faster. 

I was told once, many years ago, as I was delighting over how Wil was doing in 3rd grade, “You know it’s going to get harder as Wil gets older.” I believe this person thought I had blinders on. That because Wil was having such a good year, I didn’t see the struggles that were ahead. And you know what? That person was right on one point. It is harder. 
But I don’t wear blinders and I never did. My optimism is my strength. 

When Wil was plopped down in the stairwell at the end of the day refusing to get on the bus, two of his friends encouraged him up. It took multiple tactics but they were able to eventually get him up, running and laughing. Soon they were outside joining other friends. Moments like these encourage compassion in others, cooperation in Wil, and delight in a mother witnessing it all. So yes it’s hard, but the rewards are far reaching. Every day there is a lesson in his actions. As hard as it can be, we need the Wil’s of this world to slow us down from time to time. Can you imagine what a different day it would be for all of us if we took 10 extra minutes of laughter and hugs to start our day? Happy, Happy, Joy, Joy, Happy, Happy, Joy!