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.
Driving home from work this morning I received a call from Katherine.
“Mom, Wil is in the shower and he won’t get out. We have to leave in 15 minutes.”
“Ok, see if you can urge him out. If not, keep getting yourself ready and I’ll be home in 5 minutes. Has he eaten yet?”
“Ok, what does he want for breakfast?”
“Ok, good, thanks. See you soon.”
This is no new scenerio. Some mornings Wil hops out of bed ready to go, and other mornings take more time. We all have those kinds of mornings for whatever reason. The challenging part is, where we all understand the need for urgency, Wil could care less about urgency. Any rushing sets you 10 steps back.
Not too long ago Wil would not get out of bed. Would not, no, no, no. Even with the most patience, he was stuck in a funk. He was moving so slow, that there was no way that he and his sisters wouldn’t be late for school. I convinced him to at least get in the car so I could take his sisters to school on time, it wasn’t fair for them to be late, and that the two of us would go back and finish getting ready. Even with that extra time, he still had a challenging day. Those funks can be hard to break for all of us. Consider having verbal delays where you are unable to express in words how you are feeling–this makes it all the more frustrating.
When these halting mornings are happening, there are typically 3 key questions that need to be answered to anticipate the outcome in this situation: Is he staying in the shower out of independence? Or is it an act of defiance? Or is he simply enjoying the shower and not ready to get out?
If it’s the first one, he’s generally in good spirits and it’s simply that he wants to determine his shower time like most tweens and teens. With a little pleasant urging, he’s usually more than happy to get out and get ready for school. But if he’s rushed, this situation can easily move into key question #2. If it’s obstinance, its hands down being late to school. It means there is something bigger brewing under the surface and I need to find a way to help him get through it. This always takes time. Any amount of rushing and his heels will find a way to dig into that slippery shower floor and they won’t be coming out anytime soon. Giving him time and allowing him to regroup his emotions is the best way to get through this bump in the road. Question #3 is my favorite. Don’t we all like to linger in the shower a little longer?
When I arrived home, sure enough, Wil was still in the shower. I pulled back the shower curtain.
“Hi Mommy! Watch this.” He did a pantomime dive down the the base of the tub and started to pretend to swim.
<Phew, no obstinance. Clearly he just wasn’t ready to get out of the shower>
“That’s really good you little fish! Hey, it’s time to get to school. If we move fast enough, you’ll still have time to eat one of your two sandwiches. You can take the other one with you(he loves to take his unfinished breakfast into school).”
“Ok!” How do you spell relief? O-K!
He stepped out of the shower, picking up his towel, held it in front of him, and shook his bare little tail feather in a dance. I wrapped the towel around him and he ran off still dripping water to his room.
When I followed him into his room, I saw he had already picked out his clothes. His shirt, pants and underwear were all neatly stacked on his bed. Can you spell Independence with a Capital I?!!!
We had five minutes left. I slapped together his sandwiches and he ate one while I put on and tied his shoes. I put the other in a tupperware dish to carry to school.
“You’ll be able to eat one and take the other with you.”
“Ok!” Did I just hear the sound of music? So many ok’s at once, my heart overflows. Clearly this morning, he was ready to hustle and get off to school.
We only left the house 3 minutes later than usual and the kids arrived to school on time.
When halting mornings happen, I typically start them with questions. And when they don’t work out well, I ask more and more questions. When you are raising a child with communication barriers, the questions are necessary for everyone’s success. Some questions will never be answered, but many will–those answers help us take the next step forward. After many halting mornings where there were seemingly no answers, today was a resounding success.
When I pulled back the shower curtain I did not know what I was going to get. To hear Wil’s uplifted voice say, “Hi Mommy!” was music to my ears. That swift 18 minutes this morning was a life-winning race. Today it feels like Katherine, Elizabeth, Wil and I are all wearing medals around our necks.
Shake your tail feather to big, little victories! Onward!
“Come on, you have your ear protectors on. It will be fun. Remember you wanted to go to the movies?”
The three of us stood there, Katherine Elizabeth and myself, juggling popcorn buckets and drink cups, in the hallway just outside the entrance to the room where our movie would be playing. Wil sat on the floor, smack dab in the center of the entrance. We had made it this far with very few signs of resistance, then plop! He wasn’t going in.
Looking back, there were a few small red flags. When I ordered popcorn, Wil said he didn’t want any <red flag>. I ordered him a small bucket knowing he would change his mind. When it came time to fill up his drink cup he perked up. He reached up to press the button of his drink of choice, slid his cup under the fountain and filled it to the top. He was one happy guy holding his cup walking down the hallway <red flag down!>. All four of us walked down the hallway with our treats, until Wil came to an abrupt halt just as we were about to enter the room. Plopped on the ground. And here we were.
“Wil if you aren’t going in, can you at least scoot to the side so people don’t have to walk around you to get into the movie?” A few kids that sat on the couch across from the entryway were staring at us. It’s always strange to be stared at. But I think it’s a good thing. This is our normal. Everyone has their own version of it, and the more we see other forms of normal, the less we fear them.
Wil scooted across the floor away from the entrance.
“Great, job, Buddy. So what is going on here? It’s not that loud in there. And you wanted to see the movie. So can you help me understand?” I received no response, though I really didn’t expect one at this point.
“It’s going to be a funny movie. Hey, we might even laugh til we wet our pants. How about that!” He looked up at me, with the faintest smile like he really wanted to laugh, then put his head back down. He wasn’t ready to be that open yet.
“Is it the popcorn? You don’t have to eat it.”
The previews started rolling and Katherine wanted to go in to watch them. “Mom, I can carry in Wil’s popcorn and pop.”
“Thanks honey.” Katherine gave a big bear hug around both her and Wil’s popcorn buckets with drinks in each hand and made her way into the theater. I thought of all the times the girls need to be patient. Katherine, Elizabeth and I all need to work as a team. While Katherine took in our supplies, Elizabeth stayed out with me to help encourage Wil into theater. This is our normal. People were streaming by us into the theater. Wil remained un-phased by the traffic and the boys staring on the couch.
Elizabeth worked on convincing Wil to enter the theater by asking more questions with very little response. For whatever reason, Wil resists piggyback rides from any of us except Elizabeth, so she pulled out the big guns, “Wil do you want a piggyback ride?” This is not so easy anymore with Wil weighing 104 pounds. He stood up and Elizabeth gave him a ride into the theater. Once he was in the theater, it was like he crossed a mental barrier as much as a physical one. He laughed as he reclined his seat. He asked to hold his own popcorn and placed his drink in the cup holder. And, as promised, we did laugh during the movie, but thankfully evaded any pant-wetting.
The previous week when Wil and I went to the same theater for a Down Syndrome Support Team event to watch Frozen 2, there were multiple other kids with Down syndrome who also decided that they did not want to enter the room where the movie was being shown. My guess is they were full of excitement to see Frozen 2, but when at the threshold, they found some part of the experience overwhelming. Be it a new room, anticipation of the event, concern of loud noises in a populated room or experiencing the unknown. Without the verbal communication skills to express those emotions, the physical communication is expressed as coming to a complete stop as to stop what is happening. On this particular occasion, Wil entered the theater without incident on that day, but I fully understood what was happening with the kids stopped at the entrance, as did everyone else in our Down Syndrome Support Team. There was no staring with the wonder of what was happening. This crowd of parents and siblings have all had been there, done that. This is our normal.
When Wil was very young, we were part of a playgroup. Wil’s favorite pastime was to find the door and escape as quickly as he could. I had to keep an eagle eye on him or he would be gone. I had to leave the twins with another mom and chase Wil down the hall again and again. He was the only one who did that with very few exceptions. Most of the kids were content at that age to play together or with all of the toys in the room, or if upset, sit down crying. But not Wil. His intent was to escape at any chance he could find.
Then I started hosting Down Syndrome Support Team play dates. 90% of the moms there spent the majority of their time with the same eagle eye, because their kids first priority was to exit the door. As challenging as it was, it was all of our normal.
Katherine, Elizabeth and I recently went shopping with Wil. We all know that our time is limited when shopping with him as he will run off or take a seat in the middle of the store when he is tired. We watch for the cues. It’s a team effort. We went to one store and I took him for a walk while the girls shopped and tried on outfits. Wil and I would circle back around to where the girls were shopping so I could see what they liked, or answer a question, then we’d circle around again. We made it through that store without incident. Then onto one other store. We tried the same tactic but I could tell Wil was falling apart. He started running and taking off. I saw a friend, Julie, shopping with her daughter. I waved and said hello as I followed the top of Wil’s head through the aisles of clothes.
She said, “How are you doing?”
“You know, just chasing Wil as per usual!” Julie knows Wil, has 4 kids of her own, and is a teacher, so no explaining was necessary. She nodded her head and smiled.
Following Wil, I ran into Elizabeth. I told the girls we had limited time. Elizabeth said that was fine, she didn’t see anything she liked anyway and was ready to go. We walked together, following Wil, to give Katherine some extra shopping time. For whatever reason, during Wil’s running he decided he wanted a vest. A $250 North Face vest. He pulled it off the rack to show it to me. I agreed it was really cool, because it was. But he was not getting a $250 vest as cool and well made as it was. He was not happy with that and decided to run around the store again. When he gets like this, I prefer he stay on the move, because if he drops on the floor, it’s really hard to get him back up again. The flip side is, he can easily decide to run out the door.
Elizabeth and I both looked at each other and telepathically exchanged it was time to go. Elizabeth said, “I’ll text Katherine to meet us at the car.”
I told Wil we were leaving and he made a sprint to the door. I put my arm around his shoulders and slowed him to a walk.
“Why your arm on me mom?”
“Because we are headed to the parking lot and we need to be safe.”
“So I’m not flat like a pancake.”
We made it to the car, then off to lunch. It was time for us all to sit in one place and enjoy some time together, which is exactly what we did.
Elizabeth came home from school one day and shared with me that her gym teacher, Mrs. April Stewart sat down with her and a few other friends. Elizabeth said there was some downtime in the class and Mrs. Stewart shared some stories about her sister with Down syndrome. Elizabeth said they laughed about the similarities between Mrs. Stewart’s sister and Elizabeth’s brother. How they could be absolutely unmoving and headstrong, but also openly and unconditionally loving. Elizabeth told me how special these conversations are to her. She said you really can’t understand what it’s like to have a brother with Down syndrome and it’s hard to explain. But Mrs. Stewart really understands. She said that she also likes the others in the group to hear these stories so they can understand, too. Elizabeth said sometimes Mrs. Stewarts gets tears in her eyes talking about her sister. She knows she really misses her. I had tears in my eyes too after Elizabeth shared this with me. (April and I met at a basketball meeting for our daughters, Elizabeth and Maggie. April saw Wil running around the gym and asked if he was my son. She then shared she had a sister with Down syndrome. We instantly became friends with our special chromosomal bond.)
In many ways I feel like we live in two different worlds; the typical world and the Down syndrome world. In our Down syndrome world, what Wil does is completely normal behavior. The stops at the entrance of the movie theater when it all feels too much. Or the sprints out the door when the shopping has gone on too long. But Wil has two typical sisters and we live in a typical world. So we must balance the two. Wherever we go we must be prepared. It’s is always a guessing game of how long Wil will last, and watching for the cues of his being tired. Because the typical world moves much faster, is a lot louder and has much less patience than the Down syndrome world. In the Down syndrome world we stop when we feel overwhelmed. Or we bolt because it’s much more appealing to run down an open hallway than to be overstimulated by the multitudes of activity crowded into one room. In the typical world we crave this activity, more is better. We crave distraction, and we must pack in as much as we can in a very short time.
It is a delicate dance to balance the two worlds. Katherine and Elizabeth understand this dance and they do it very well. I’m always amazed at how well they roll with it and we make it all work as a team. I’m thankful for the Mrs. Stewarts of this world. It’s of great importance for Katherine and Elizabeth to know others who balance these two worlds. These friends are our bridges–where our normals are broad and in-between; it is a place we can laugh and cry together with no explanation needed, because our understanding is whole on this well-traversed common ground.
He said mom, look at me, and he placed my hands on either side of his face. I looked at him. At first what I was doing screamed for attention. I did not have time. But he smiled, and I melted into his little face. Those almond eyes, his soft innocent stare that only asks for all that I am. He wanted his mom, not half of his mom, but all of his mom. We all want all of who we are with, and all of who we are, but along the way we forget to ask. We forget to ask that even of ourselves. He doesn’t forget. Thank God.
So then, for that day, by virtue of that moment, I am brought back to life. Back to a place I didn’t know I lost because the distractions filled my life of all the empty spaces. His hands on my face cleared the room. The empty spaces become empty again. It is not sad. It is a feeling of freedom. Life zooms in full focus to his face, and that face is everything. I am filled with a peace, a love, that I was born and created with, but had forgotten a long, long time ago.
We know that peace holding our babies. We can stare at their sweet, innocent faces with their gurgles and giggles, and their sleep for hours. Everything else sheds away. They are our everything. Then they start crawling, and toddling, and soon they find new independence. Though they are still our everything, distractions start finding their way into the periphery. Our kids soon pick up the habit of distraction just as we did–from our parents, from our environment, from responsibility. It just is what it is. It happens so very gradually, we don’t even notice until our life is full, so we think.
Until one day, you are awoken. It happens in the simplest of ways. Because that is how the true joys of life are–simple. I was washing dishes, my mind not even on the dishes. I was a million miles away living with the million other things that I had to do and what I already had done. A voice cut through the swirling galaxy of my thoughts and said, “Look at me mom.” The voice interrupts but the distractions need to be heard. They will not lie down for a simple interruption. They have been born of habit and so persist. “What do you need, Buddy?”
The voice beckons again, but this time, he walks up to me and places his hands on either side of my face. They are like paddles shocking me back to life. The distractions cease. They don’t fade to the corners, they lift and fade into the ether. My Life is back into rhythm with what matters. This is not another distraction pushing out the distractions, like a drink, drug or food. This is real. This is God talking.
This is where we shut up and listen.
Underneath all the noise, he wanted his mom. He wanted me to see him, to know he was there. Not partially, but fully.
We all want to be seen fully, to be heard fully, but we learn to live without it. I’m not sure what it is in Wil that he did not learn that part of life, but I’m sure thankful that passed him by. I don’t listen to others as well as I should, but he reminds me to stop and listen. Not partially but fully. Whenever I stop, and turn my head to who I am with or what we are doing and fully listen, life immediately feels fuller. Because that is how the true joys of life are–simple.
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)
When Wil was a baby, I declared Wil would get his high school diploma. Wil would have full inclusion in the classrom. Wil would drive. Wil would go to college.
Today, I still have high hopes but they look a lot different from those early declarations. Wil is not going to get a high school diploma. He will earn his Certificate of Completion. Wil is in 7th grade and reading at a beginning 2nd grade level. Does that sound sad to you? It may have to me those many years ago. I may have believed someone wasn’t doing their job.
Today, to see him sit down on the couch, put on his glasses and read a beginning reader’s book is one of my greatest thrills. Or to drive with him in the car and hear him read billboard signs fills me up with a happiness you can’t buy.
Why? Because I now know the steps it took him to get there. And there is no way I could have known what those steps would look like when Wil was a baby. I had to take those steps with him. Day-after-day-after-day.
Those early high hopes were important. They gave me stars to reach for. But as we moved further along the road upwards toward those stars, I saw some where just not going to happen.
Wil works hard, when he wants to, but no matter how hard he works the reality is he has certain limits. He processes words slower. He moves slower. Wil also spends the majority of his time at school in the resource room. The full inclusion I envisioned for him is available, but it’s not the best thing for him. He simply can not comprehend and keep up with all the studies his typical peers are doing. He still spends time with his typical peers in gym, science and social studies. But he learns reading and math in the resource room, along with life skills.
Now Wil is going through puberty. Every morning is a true test. He needs lots and lots of encouragement to get out of bed. If there is any forcing to get him out of bed, his whole day could be set back. It’s hard emotionally, for me. Every morning I need to steel myself for the long haul. For no missteps. I know we will get through this. But right now it’s hard.
I’m entering a new chapter with Wil. I relate it to when he was born. I’m navigating a new place I have not been before. When he was born, I wanted to know what Down syndrome was all about. I could read about it, but I didn’t really know it until I lived it. Travelled alongside other parents on the same journey. Now I’m navigating “What is Down syndrome with Puberty?” I’m traveling alongside other parents. This is an emotional journey and it’s extremely valuable to walk with others who understand not just what it looks like, but what it FEELS like.
Puberty is challenging for anyone. But you tie in communication and comprehension barriers, and it’s a whole new learning experience. Right now I can best equate it to a tall-hedged maze. I can’t see where we are going, or what direction to turn in, but I know we will eventually make our way through. We walk down one aisle to find a dead end. We walk backwards, retrace our steps to where we were, and try a new direction. We hit another dead end. We walk backwards again, start over, and find ourselves further this time than before. Progress! We build on that, get a little further, find another dead end, but know we are closer. We try again.
Never, ever dismiss the power of a 12-year-old boy reading at a beginning 2nd grade level. You may never know the emotional strength and steps it took to get there. We still reach for the stars, but in a different way. At first, I thought reaching for the stars was about achieving certain goals. But somewhere along the way I found the real stars are where we make true emotional connections along this mazy path.