Crafting Bradley

Bradley is not a crafty guy. I think he has the imagination for it for sure, it’s simply a lack of desire on his part!  It every once in a while he likes to surprise me with something he does craft wise. 

Last week, for the first time in so long I can’t even begin to calculate, he brought me a new package of Peppa Pig Color Wonder. We love our Peppa in our house, though I had started to think that his love of all things Peppa was waning. Nope. Still loves that little pig! Haha! 

So while I was prepping his medicine and his lunch, I also helped him to get the package open, sort and choose the perfect picture to create and then when he couldn’t get a lid off of the new pens, I helped him do that.  He let me know when he was done, and then he showed me his work and was so proud of himself, as well he should be. I told him it was beautiful and that we should put it on the refrigerator. Which Bradley took to mean, clear off the fridge so his artwork had a spot…whatever, it was pretty much time to change out the pictures anyway.  Haha  

But wait, there’s more!  Haha!

Fast forward to Friday and during OT after school, Bradley created a pumpkin masterpiece! Using paint and a brush, he painted this beautiful pumpkin that now sits proudly on our mantle in the living

I have a great video that won’t load but you can at least enjoy the end result.  ❤️🥰

So he may not be super crafty but it sure is super awesome when he decides to be!  

31For21 Blog Challenge for Down Syndrome Awareness and Acceptance 

A Worthwhile Gamble

We had the option to send Bradley back to school after Spring Break last April. It took quite a bit of pros and cons listings in my head, in Eric’s head, and between us before we came to our decision and even then we weren’t completely sure it was the right one - but it did feel like the right one for Bradley and by proxy - for us. We decided to not send him back to school in person in April or for the Extended Summer program that they offer for four weeks.  

We knew that he would do much better at school than he was doing at home over Zoom. We knew for a fact that he was getting nothing from Zoom, though I did feel like any day he could actually prove that he could listen to someone on Zoom and follow directions from them - that was kind of a big deal. But over-all, Zoom lessons were a complete waste of time and such a study in frustration for all of us. 

So why would we willingly choose that path? 

Last October, I talked about Bradley having private therapies three days a week for ninety minutes a day. I kept them in the morning because at the time we were also having ABA four days a week for two to two and half hours a day in the afternoon. We continued that same schedule throughout the school year and most of summer. We only changed when school started and then we changed everything! 

Bradley started a new school; Middle School, this Fall. He left behind a teacher he met once, his aides that he adored, and a few best buddies that he didn’t get to see because they split up his class and one didn’t come back either. He left behind OTs and Speech therapists that he was still pretty new too, because his favorite OT had retired and his favorite Speech therapist was moved to another room. He really enjoyed his new OT, and both of the ladies he had for speech and when it came down to successful Zoom times…these three are the ones that ever got the most out of Bradley. He had to bribed with Tokens to do it - but he worked for these ladies almost willingly. 

He worked for the important Zoom sessions, and he was making huge leaps and bounds through his in-person therapies so much so, it seemed counter-productive to change any of what we had in place. ABA took all of our afternoons, but we loved our therapist so that was okay and then we still had time after to have a family night before dinner, bath and bed. It all worked. 

And then there was the potty training and the behaviors. We were still trying to get the potty training to push from as little as fifteen minutes apart to something more feasible for going out into the world. And this might have been the hardest part of our decision. We were on the fence knowing that sending him back to school in person would either complete what we had started…or tear it all down for us to start all over during summer to try and have him ready for Middle School… Knowing that being pushed for unpreferred tasks would likely create behaviors we didn’t want him choosing to purposefully ignore his potty training to be one of them…we decided we didn’t want to risk it, so home he stayed. 

We had a great summer. Potty training several highs and several lows, but we are getting there every day. I’m looking for one of those signs where you manually change the number for how many days without an accident. I feel like it will be motivating and humorous for me to have to help me through the numerous accidents as he still does not initiate for potty. I believe it is coming and will help someday, but I haven’t set any bets in Vegas for it…the odds of me getting it right are way too stacked against me. Bradley knows and only Bradley knows somewhere deep inside what the criteria and timeline needs to be before he will choose to take over that task and be a bit more independent. 

We stopped ABA in July. And he is still doing very well. While I now there is always more to learn, there is also a time to step away for a break to assimilate what he has learned, put it into practice on our own and see how we can balance out in the end. So far, the balance is pretty good and the knowledge that we were taught was stellar to the point that we are not transgressing into dangerous areas of his behavior. Will he return someday, more than likely…again there is always more to learn and more for him to work on.  Right now though, the added freedom is akin to everyone being able to come out of quarantine and start living again. Bradley has been able to successfully enjoy all the volleyball games for his sister because our schedule now allows it and his ABA work has taught him and us how to make the events enjoyable for him - even when they go super long and he is asking to return to the truck and head home. 😳 😂. 

But that is how life is supposed to go I think. There is supposed to be a balance that lets the portions of your life interconnect and lock into place much like a puzzle. When successful; this creates a family life, and I think at the end of the day the best we can hope for is to bring these two girls with their extraordinary lives together to mesh and fit with this little boy with his extra chromosome which makes him extraordinary in his own right - and make it all somehow work. 

So we took a gamble and we didn’t send him back to school in April or June. We kept him home and we worked with what we had. There will always be glitches in the matrix when we have to start something new, but for the most part - my reports home from school are that he is having more great days then troubled days. And as staff is learning to figure out the puzzle of Bradley: how he ticks, how he avoids, how to get around his stubborn streak and work his options to get him where you want him to go without too hard a push…his days continue to number higher in the great day column. So that’s a pretty powerful payday for us because that comes as such a win for Bradley. If he is happy then I am a lot closer to being happy too. There are still some issues I need to discuss with his teacher and we are working on that scheduling for hopefully soon; but for now, he’s okay and that’s really good. 

31For21 Blog Challenge for Down Syndrome Awareness and acceptance. 

Changes On a Saturday

What a long Saturday…mostly because it was a long week followed by a long over night where Bradley rarely slept and that made for a long night and a longer Saturday. Eric is having some really painful back spasms, so Bradley has had to snuggle up with mom at night and not dad, which I don’t think he actually minds, but it is a change in his routine. In a way it’s good, not that Eric is in so much pain - but it is helping Bradley to adjust to a new routine so that even when he returns to his daddy snuggles at bedtime, he can rouse enough to walk to his bed like he does for momma. I mean, he may be stuck at 62lbs…but I am not trying to work at UPS - I don’t need to be lifting that much weight (especially since my knee can’t really handle it). 

Our plan was to head up to Cal Lutheran tonight and watch the volleyball game. Sydney is doing an official NCAA visit there in a couple weeks, so we were curious about giving her a chance to watch the team dynamic and see if it might be an appealing place for her to go to school and potentially play volleyball there. Bradley has been overly tired and easily overwhelmed today, so we were going to let him stay home with Madison and just play with her, maybe go get ice cream with her or something…that was the plan anyway. 

Bradley really loves Dad’s truck. But Dad’s truck was recently in the shop for a week and so Bradley’s car seat is not in there - so it is not an easy thing to take Bradley for a quick ride, besides…it’s not really a quick ride he wants - he never really wants to get out of the truck once he’s on his way. 

So we told him he could go with Madison for ice cream, but she was nowhere near ready and he was very ready. At that point, the delay was the very straw that broke the camel’s back and Bradley just lost it. So many tears - so completely crushed. At that moment, I knew - we were changing our plans completely. Instead, we stayed home with both girls and Bradley. Once I got him calm, we went in to eat some tortilla chips with five layer bean dip - which he was thrilled by, so brand new to him. But I think the bigger thing was having a few minutes with the family together, something that has been lacking over the last few days. Madison was at Horror Nights at Six Flags all day and night yesterday, and then after school Sydney had practice and then she and our sweet friend went to a fun Halloween Carnival type place for the evening…so Bradley was kind of stuck with me as Dad was medicated for his back and sleeping. 

You don’t always know what Bradley is wanting or needing, when he is calm he can usually work through it with you and if he can’t verbalize or show you physically - we can rely on his Speech device. When he suddenly gets super agitated, we usually know why - but we just can’t always figure out how to help him calm down or offer him another choice that is just as appealing. So I go with the basics. My voice gets calmer and lower, he gets his weighted blanket across his lap and I keep his hands from hitting or his head from trying to make contact with someone or something. Maybe you could call it damage control. 

At some point, I was beside him quietly waiting him out a he calmed down. And once he transitioned from angry to sad, his little whimpers eased too and then he settled and we returned his movie until he was ready to go to the kitchen and get something to eat. As Sydney sat across from me with Bradley between us, I apologized for the upheaval in our plans. Her plans were not originally with us, but her friend had to change her plans, so we made a new plan…but now that was changed as well. But she just shrugged and smiled and told me that she thought that Bradley just needed us all home together today. 

I guess when it comes down to it; Ferris Bueller, continues to be as wise as he seemed to be to me thirty years ago when I first watched that movie - to paraphrase…life moves pretty fast, sometimes you have to slow it down. So today, we slowed it down for Bradley. Did we all benefit from that? Yeah, I think we really did. Is that the way we want to do it? Nah, it can be frustrating to readjust our plans and be cool with a whole new plan after taking the time to get ready to leave the house.  But we have learned over the years that there are times where Bradley is at the end of his patience and at the end of his endurance…and though sometimes I see it in his eyes early; not always.

After the meltdown, it was a bath to continue the calming, then jammies and then I let Bradley lay in his bed for a bit. I think that he almost put himself to sleep, but then got super squirrelly in there to keep himself awake - so I went to get him and he came out to the living room with me. Headgear, CPAP machine and weighted blanket and he was out within five minutes. Settled him into a deeper sleep, then walked him to bed, bought his machine in and so far - still asleep and still attached to the CPAP… so a very easy bedtime after a struggle of an early evening.  

I think the plan for tomorrow is a truck ride after we get the car seat back in.  Maybe a great day to go play in the sand at the beach, let him watch the water and then maybe a fun lunch or something. Life last week was way too full and way to busy for Bradley to come through it without needing some TLC and some downtime with all his people settled around him.  He handles things in such amazing ways with so much patience and resilience…sometimes we forget that life can be really overwhelming to him.  

We got you buddy, lesson learned again. 

31For21 Blog Challenge for Down Syndrome Awareness and Acceptance. His is a life worth living, his is a love you’re Blessed with having, and his needs are so small they can be missed until he lets us know there is a gap - then we reassess and correct the sails to fill the gaps. 

Running Out of Daylight

Well…if you’re going to raise three kids and be present in their lives when the big events happen there are a few things that are going to happen…. 

First - you are going to be exhausted. 

Next - you are going to literally run out of day before you run out of things to do. 

That would be me. 

We have been all in with the girls and Bradley from the very beginning. We have been to all the recitals: dance and musical. We have gone to the art shows and gone to field trips, making sure we try to occasionally hit the fundraisers from the mattress sales to the food vendors. We have driven all over CA and parts of Nevada for Band and Volleyball and sometimes we’ve done that in one day. We’ve frequented  Vegas and enjoyed some great rooms and some crappy ones. When they were both playing they were on the same team in Vegas one time, every other time they were on separate teams with schedules that usually had me running one end to the other of a convention center with 120 courts…usually high to low or vice versa. Early, early mornings and late, late nights. One tournament in Vegas I ended up with a half marathon in terms of miles I logged…and I didn’t always have my phone on me - sometimes it was just down in the Bradley’s backpack.  The only times Bradley wasn’t at the tournaments were the out of states to Florida, Tennessee, and Kansas - until COVID. Last year was so different and hard, with one parent to drive Sydney down and two parents from the whole team total allowed in the gym - Bradley didn’t go to any and Eric and I didn’t see much. When we got to High school season we were thrilled that he could come back in and both Eric and I could actually see the games again. So we’ve really enjoyed the games (as much as close scoring…usually pushed to five sets per match can allow)…so much stress!  HAHA. 

Those late games have really tested Bradley - and me. He has been on the bleachers and in my lap and back on the bleachers and in my lap and back and forth…then to the bathroom between games and sometimes during a game if he gets fidgety and I know he has to go.  Knowing we would have two late home games this week, we got his lovely Respite Care giver Sam to help us out and let him stay home. All that was in prep for Thursday for another Home game and Senior night. We couldn’t have him miss Senior night. Eric has had some serious back spamming this week so he ordered these cool and easy to use ands carry padded chairs: one for him and one for me… but who am I kidding? We got a chair for Eric and one for Bradley.  This is Bradley’s first year without the safe and comforting confines of his stroller. We have a special stroller that some special needs parents recommended from MacLauren that works well, but doesn’t recline or have much padding, but he does seem to like it…but I wanted him to be in the stands with us and not have a chair on the floor if we could do it.  So yeah, a lot of back and forth in my lap as he starts to get overwhelmed.  Turns out, the padded chair is not only super fun but it has arms that provide a secure little space that he can climb in and feel very comforted in.  He was so happy, so comfortable and if it had reclined…probably asleep by the end of the game.  HAHA.  

Our girls lost in four…a bummer for Senior night, a huge batch of frustration for our particular Senior. But not a huge surprise for us as we knew that with only two starting seniors…a senior night with seniors all playing more…against the best team in the League…found us mostly surprised when we won the first set. 

That being said, we all worked pretty hard to make sure that the Seniors had a pretty nice night. Coach likes the girls to each have a 6ft banner to hang in the gym. So I got tasked with that and we got those up before our first home game. Then they wanted Fan Faces, so I got tasked with getting those in. Then we had a mom that offered to put the gifts from the teams together for the girls…so someone had to gather all the gifts because this mom works very difficult hours and couldn’t get to the games. So the Team Mom and I gathered the gifts and I brought them home and helped get them all organized for the girls. We thought we would be able to get in to decorate the gym the night before Senior night as no one could get in on game day…nope. Turns out Basketball (who is not in season) had the gym and so we couldn’t go in. We get to the gym game day and expect to see promised posters that the ASB was going to do for us with the name and numbers for the girls…but nope - didn’t happen. They let some of our younger players go and get the big school letters “ACHS” to sit on the bleachers, and because it is October they threw some pink and white balloons around with some pink and black steamers by the door…but that was it. Kind of disappointing. I knew that the mom that was supposed to get the helium for doing balloons wasn’t doing it…so I spent my day getting the balloons.  Eric had ordered some Volleyball shaped balloons, so my mom and I took them to the grocery store and they filled them for us…then we hit the Dollar Tree and scooped up some blue and silver star balloons to go with some other star balloons that Eric was able to get at the 99 Cent store. 

I’m so glad we went through the effort.  With my mom carrying all the balloons and some help from a player’s sisters - I was able to get all seven gift bags up the hill from my car to the gym.  Realizing there really wasn’t any decoration, we tied balloons to their gift bags and then around the letters, trying to make that a little more festive and special.  Still a bit of a letdown. But it still looked okay. 

Dinner showed up and we helped get that ready and set up for the girls so they could eat and digest before the game and then between the end of JV and before Varsity warm-ups there was a little recognition ceremony. The girls all gave a small bouquet to someone in their family and then gave a small speech.  Four sets of volleyball later, the girls opened up a special frame that was made for them, and then there was some quick pictures all while custodians were trying to turn out the lights and kick us out…but it is what it is.  We’re a girls team and we’re not girls basketball… so… sigh

We got home, I got Bradley ready for bed and we settled for his CPAP time and for him to settle in and get to sleep. My mom and Eric both went to bed and Sydney sat with me on the couch while Bradley got deeper to sleep so I could try to get him down.  I finally got him done and made sure he was settled into sleep, then I had to get all his stuff taken care of for the night, and prepped for the morning.  When I looked at the clock again it was to see that I had literally run out of day before I ran out of things to do as the clock hit 12:07.  

My boy was amazing last night and slept until I got him up at 8:10 this morning.  I sat down on the side of his bed and he slowly sat up and looked at me, gave me big hugs and warm, little boy snuggles before we got him to the changing table for his medicines. I offered him his favorite long sleeve shirt as it was a little rainy out and he chose a pair of pants that didn’t match at all - but that is signature Bradley now. I give him a few choices and he usually quickly chooses something not in my hand…and neon if he can find it right away. I don’t mind, of all the morning battles we could have - matching his clothes everyday is not on my list.  A lot of times he does match, and a lot of the time it’s in shades of neon…whatever, maybe it will make him easier to find if he gets away from staff at school…gotta think positive as much as possible you know. 😉. 

I worried he would be cranky and tired at school, but his bus aide told me he had an actual excellent day. Am I going to keep him up until 11:00 every night? Of course I am!…Not.  HAHA Gotcha. I don’t think he could actually stay in a good mood daily over a longer period of late nights…not sustainable. Definitely not sustainable for me to stay up that late every night!  I was exhausted today.  

So my Blog Challenge became a Blog for Thursday and Friday together. I imagine I will find something more I want to say later on and put out two blogs in one day and be all caught up in that 31 Blog Challenge. Life is about Progress not Perfection…life is about living and being in the moment…just like I try to remind my kiddo…take a second to just be there in each moment, right then. Try to soak it in, so you’ll have it for later - you’re going to want that. 

That is the last lesson for the day that being a mom has taught me…help your memory take a picture, you’re going to want to see them in your mind later and your heart has plenty of room to store them, I promise! 

Happy (Thursday) and Friday Friends!  

31For21 Blog Challenge for Down Syndrome Awareness and Acceptance! 

Sleep is Everything!

Fourteen months ago Bradley and I did a sleep study at CHLA. He sort of slept and I studied him most the night. It was one of those weird appointments where he was more compliant than usual because he was given his night time meds and then he started to get super tired and let the tech get all the wires in place. Oddly enough, he really didn’t get more than an hour or two of deep sleep…??… Hmmm strange. How odd that a little guy being constantly monitored didn’t sleep really well.  Weird. HAHA….

But, they got enough to learn that he has moderate sleep apnea. And by Moderate, he is barely over the threshold of moderate. So that left us in a weird place of do we want to work with him to get him adjusted to a CPAP machine or wait and see what happens over time. Well, we decided to go for the CPAP. What?! Are you crazy? Well, maybe.  But this time I think I might have got this one right. My thought was simple, what happens if we wait and he goes from a slight need to a desperate, it’s he wears it or we lose him kind of scenario? If we practiced now, if the worst happens, he won’t be coming to it as a new customer - older, more stubborn, and stronger.  

So they delivered a CPAP machine the day before Thanksgiving. I stared at it as I took it out of the box and put it together, figured out how it worked and then I put it back into the bag and put it aside unable to look at it as Thanksgiving came bearing down. Cowardly? Yeppers and proud of it. We got through the Holiday and the weekend and we worked on a few minutes with the headgear alone on and then a long break and then a bit longer and then a long break. We would give him his token chart with his movie and he would get tokens for leaving the machine on. We soon learned that the size was completely wrong and that required some frustrating conversations with their customer service who finally sent a rep out to work on the best sizing for Bradley and he even helped us with his best tips and tricks for getting Bradley used to it and then he also gave us the stress relief that comes with time. You see, we are supposed to have him on for four hours a night, and I was really concerned about it, but our rep was great and told us not to worry about it and just do the best we could with getting him used to it. 

So we worked with Bradley with his movie and his tokens and then I just decided to give him a shot at the headgear and the machine. And he did great. He did incredible with wearing the headgear with the machine running while he was sitting with dad and falling asleep, I was so proud of him. He wasn’t so great at the machine working while he was sleeping in bed though. So we spent some time with working out his meds differently.  I adjusted his night time meds so that instead of trying to do a second dose when the first wore off a few hours later, I gave him the whole dose at one time so that he would sleep heavier earlier. By sleeping heavier earlier, we could get him to sleep with some good time while he was out with us, then we could take him back and put him to bed, hook him up to his machine again and most nights, he actually keeps it on. 

The Customer Service calls are nowhere near any easier, but the use of the machine itself and getting him to accept the use of it has been improving nightly. And though I know I am jinxing myself and Bradley by saying this; he has been sleeping so much better, more often than he has slept in a few years. If he will keep the CPAP on for longer than the one minute after I leave his room, he will sleep pretty well. Sometime in the middle of the night he will throw off the headgear, at that point it will either wake him up and he’ll come in to me. I bring him back to bed and help him settle back down to get to sleep, sometimes in moments, sometimes in increments of twenty minutes. OR…sometimes, Bradley drops off the headgear and turns over and goes right back to sleep. When he does that, he and I don’t visit and he and I sleep through the night - and he and I are a little groggy as we try to face a new day with more sleep than we have on a regular basis. Those are just the weirdest days!  And he’ll give me a couple nights of this, get me excited and comfortable with this idea of sleep - then he’ll have that night where he won’t wear the CPAP for long and then we’ll visit off and on every couple hours and I start my day like a zombie as if I have never had a sleepless night with Bradley ever before.  Amazing how quickly one really wants to adjust to sleep; and believe me, I really want to be so used to sleep that I can wake up on my own without an alarm and feel completely awake.  Ah…here’s hoping for that to happen some day! Until then, one night at a time. And for each good night; less adverts behaviors during the day, a little boy in a much better mood with more singing, more laughing and a little more playtime! Life is just better with the little boy when he is feeling better, sleeping better and living his best life! ❤️

31FOR21 Blog Challenge for Down Syndrome Awareness and Acceptance.

Dinner and a Movie

Bradley had his first date with someone other than Mom or Dad. I know, at 11? Really? Kind of pushing these kids at a young age right?  

Yeah well, no way was I about to say No.  

“Paw Patrol” came out at the end of summer. I was vaguely aware but didn’t think much of it. Turns out, Madison put a lot of thought into it, and a lot of planning. 

I’m folding laundry and Madison walks into the living room and tells me she wants to take Bradley to see the movie. And I tell her that’s cool, but I’m not sure if he’s up to a whole movie at a movie theater, they’d probably have to leave early and all that. And then we got talking about other things and off we went. 

Fast forward a couple days, she has her next schedule and she tells me her next day off and she wants to take Bradley to the movie. I asked if she was sure, and her reply was “Of course.”  

Every day she comes in from work, she gives Bradley big hugs and they usually snuggle some, and she was always telling him, “You and Mei-Mei are going to the movie, are you excited?”

Bradley always said Yes, although I’m not sure he understood that they were going to go somewhere together or he just loves his movie so much, just hearing the word movie makes him happy. But eventually, the big day arrived. She got his bag together, he kissed me and told me good-bye, and she led led him out the door. His smile was HUGE! And when she put him in his seat in her car, he was giggling he was so excited. 

She said he was a little unsure about the movie theater, but he recognized the big cutout ad for “Paw Patrol” and once they got to the theater, he was both nervous and excited by the sound and darkness. But for the first time ever, Bradley sat through a whole movie in a movie theater. He has been in other theaters, but usually asleep for part of the movies - like when he was a baby. Or the special screenings where it is quieter and not so dark. Nope, this was a typical screening and he was engaged until the last ten minutes or so, where he was getting a little antsy, but he made it! And he enjoyed it! 

They had nuggets and fries after, because it’s kind of the perfect date meal.  And then she brought him home. He was excited and tired when he got home; after all, it was a huge deal for him. It was a lot to ask to not only watch the movie, but to be out alone with his sister and being such a big boy. No behaviors or accidents, no running, yelling or hitting. Just acting like a perfect little gentleman. I was so proud of him. And happy for her. Madison did something with Bradley that was special of their time together but also a big milestone for him. So very exciting!

My little boy is growing up. And even more, the work we have put in to understand him and to be able to communicate with him has led to this amazing opportunity for him to experience something fun an exciting just like any other typical kid. And Madison opened the door for him on that. She knew going in that he might not be able to do it; but she did it anyway, and together we made sure he would have all the tools he needed to support him in this new adventure. 

So yeah, my son had his first dinner and a movie date with one of his all time most favorite people in the world.  They’re definitely mutual fans for each other, he’s one of her favorites and she is one of his. Movie date a huge success! My girl definitely knew that her brother was ready for this before his parents did that’s for sure. So glad she as willing to try! 

Can’t wait for the next kid movie to take him too!

31For21 Blog Challenge for Down Syndrome Awareness and Acceptance. Nothing like the bonds (and sometimes the fights) between siblings!  ❤️

Eight Months and Twenty Seven Days

For some reason, I thought it would be a brilliant move to start potty training again during a pandemic. I didn’t jump in immediately for many reasons: I had no idea (no one did) that two weeks to flatten the curve would evolve into what it did, Zooms were trying to be the death of me, and ABA over Zoom was not going to get Bradley anywhere near potty training. So I waited until month ten and one sign from Bradley that he was ready. 

I bought a book on potty training for kids with Special Needs and began preparing in December of 2020. I was almost ready when Bradley was sitting on the couch one day, looked over at Eric and said “Potty”. I felt like that was the only sign I was ever going to get, so I was all in.  You see, potty training was nothing new. From the time Bradley was five, we have tried every break from school we have ever had. He of course always waited me out knowing that the mess would get to me, his temper would get to me, the potential threat to my body would get to me and I would stop. But after years of learning to handle and manage his frustration and behaviors, I knew it was now or never. Bradley is incredibly strong, like twice as strong as Eric and he can break away from me if he really wants too. So for me, it really felt like now or never for him. 

I set up the bathroom to be a place he was willing to go into; poor girls, Buzz and Woody now watch them on the toilet. One on each side in the form of wall stickers; in fact, the whole gang is spread out around the area. There is a stool to trip over for them, but to make it more comfortable for Bradley. There are some books in there to keep him occupied and patient when Nature moves a little slower than he likes; and if the girls are so inclined to read “Happy Easter Mouse” or “Brown Bear, Brown Bear” - well, it’s in there for them. There are also some Toy Story action figures to play with in there for anyone that wants them, but Buzz and Woody don’t leave the potty area. And we won’t identify how many times they each have had disinfectant baths themselves due to location, and excursions that Bradley has sometimes felt were warranted. 

So life became about a timer and the potty, and there was no room for anything else in the world. I put him in big boy underpants and we began. We tried to hit every twenty minutes, but there were times we were lucky if we could go ten minutes. We could hit success at twenty and even thirty, then he would shut down, absolutely refuse to stay dry…and we would be back at ten and earning tokens to get the reward of his movie. I did laundry daily, cleaned couches and carpets often…our house was a tough place to be there for a few months. 

Frustrations were running high, bickering amongst ourselves and arguments about whether this was the best thing to do or not. Boiling over onto each other and Bradley, until I remembered a lesson learned from one of the girls. Using the potty in a potty or a diaper is literally the only thing a person can decide to do or not do as a kid. Pushing a stubborn child to bend to my will - would never be pretty in the end. No more being upset at accidents, just clean up and go. But consequences were introduced. Sadly taking tokens for accidents and then trying to give work opportunities to earn it back. Incredible excitement for staying dry and big token drops too. 

And as I told Eric, look how strong he is now; if not now, when? Give him another year with him knowing that the harder he fights eventually I will give in and he will get his way? Knowing I will have to give in because I won’t be strong enough to keep him from hurting himself, or me, or one of the girls? So we pressed on. 

In June, we went on a family vacation and when we got back we stopped ABA. But Bradley was incredibly successful. He had three accidents the whole trip, and though he wasn’t initiating, it was still a huge win for us and really for him. He is proud of himself, though he doesn’t want to take complete control of his potty time, he is proud that he goes. If I am paying incredibly close attention to him I can catch most times before we have an accident; but sometimes, he just can’t stop himself. He still has serious digestive issues so some days his body is just a wreck and we’re cleaning up a mess a few times a day - yesterday was one of those days. 

But Saturday was a banner day, for the first time he initiated potty. He didn’t say “Mom take me potty” or “Mom I have to go potty” no it was quite subtle actually. He tapped the front of his pants and I asked “Do you need to go to the potty?” And he said “Yes.” And then we went and he did his part and it was a moment of sheer happiness for me, I don’t know when he will do it again, but I know he can. And until that moment I wasn’t sure if he would ever get the inclination from his body and then translate that to having to go to the potty.  At least once he has. Someday I hope he will again.

For now, we still live life on a timer, albeit a longer timer. A good ninety minutes to a couple hours. Life is made infinitely more complicated by the constant trips and the constant watching to try to read the signs from his body - whether he sees them or feels them himself…we try to catch them to keep him successful. It’s been just four days shy of nine months. A pregnancy, but with a much longer labor waiting for delivery. 😂. Definitely a labor of love and stubbornness - from all of us as we fight to get Bradley to one more level of independence and growth.  

Who knows…2021 might be our year, or maybe it’ll be somewhere further down the road, but for today - right now…I am truly okay with where we are and how well he is doing learning this really difficult skill. 

31For21 Challenge for Down Syndrome Awareness and Acceptance. Accepting of where we are right now; in this moment, on this incredible journey knowing that Bradley is worth every single moment, effort, joy, and frustration.  I love this kid!  ❤️

Busy Sunday ❤️

I love Sundays. As my catch up day it is usually my most peaceful day because it lets me close out a week and open a new one fresh.  Some Sundays we end up running harder than ever, some we get to relax. This was a running Sunday. And though it wasn’t peaceful, it was productive and something I needed. I spent my morning with the family and the afternoon helping two dear friends finish prepping, wrapping and staging gifts for the Seniors on this year’s volleyball team. We are gearing up to the end of the season and it truly feels like we just started.  The girls played their first summer league game on the 14th of August…summer league was disjointed and messy as the kinks of a year lost showed themselves and the girls had to learn to play together, the younger girls had to learn how to play best of five rather than best of three, and girls that last played during a quick six day season in March - it sure showed. But come the start of league, we were hoping for some wins in the midst of the losses.  Turns out we are sitting at 4-1. Not sure how the Season will end, but right now - I think everyone is pretty, pleasantly surprised by that - I know we are. 😁. So yeah, Senior Night is bearing down on us, and as much as the usual weeks tend to go slow, I know for a fact it will feel like a minute and we’ll be standing on the court and hugging my daughter, all while I will be trying not to bawl my eyes out. 

But that’s the way of things isn’t it? No matter how you try to live in the moment and appreciate where we are in those moments, time just marches relentlessly forward. I remember back when Eric and I were preparing to get married, a dear friend looked at me and said, “take a moment to be there, forget the hustle and the bustle, and allow yourself a moment to be there and soak it in.” Of all the advice I received that day, and I received some amazing words of wisdom to carry with me over the next 24 years, that is the tidbit that has had the greatest impact. That is the advice that I give to others as well. 

The day before Season started, I looked at my daughter and I told her: “I know that there will be a lot of pressure on you, you worked to be a Captain because you wanted to achieve that goal. You got it, now comes the work to stand under that pressure and the weight. But every time you walk onto that court, remember that this is your last year, each away game, that is your last time walking into those gyms. So take a moment to breath and take it all in. Memories are fickle and they fade faster than you like, but when you take the time to feel yourself in these moments, you will remember them better and longer in the future. And in the years to come, you will want to remember these times.”

And because she is a really bright kid, with a lot of empathy and genuine kindness in her make-up, she has taken the words to heart. So last week, we went to our last away game at Oak Park, and there was the pure adrenaline rush that comes with a win - but she looked at me and told me she was a little emotional. Not only had they won (to had been years since they beat that team in their home gym - let alone sweep them in the season) but they were playing there for the last time and it made her a little sad.  

I could only laugh at that and hug her, knowing inside I am feeling these emotions with every moment as I see her walking through her Senior year. When she leaves to head to school or practice and I watch her go because she has her license and no longer needs a ride. When I hear her key in the afternoon, I see that she is moving more into the realm that Madison is in now. Coming and going as her schedule requires, no longer a part of my schedule as she doesn’t need me to get her places. It’s a mixed review in my head and heart. She is growing up like she is supposed too, she’s a young adult and making her own plans and decisions and that is the way it is supposed to be, but doesn’t really make it any easier for her mom and dad for sure. 

Madison may live at home but with each passing day another part of the nest is falling away as she is growing into the life and career she wants to live. Sydney will do the same and that’s a good thing, but it’s never easy to be left behind. 

Though Bradley will keep all his feathers in this nest as he grows, he will have his own growing pains and sadness. He is not able to gather these moments to hold close and appreciate. He just feels the absences more and more. This morning he got up with Dad and I got up a little bit later. When I walked out, he came running to me like he hadn’t seen me in days and not less than an hour when he first came into our room to sit on the bed with me wearing a Santa Hat he found and then put on me. But that’s the way it will be now. He will be looking for them, for me, for Dad, for the person that is absent. During therapy, he asks for his sisters and dad on his IPad constantly. When he walks in and they are here, he attaches himself like a Koala Bear and when Sydney isn’t here, he wants to go to Volleyball, because he knows that’s where she is all the time. He won’t understand that Senior Night is special except he’ll notice and appreciate the presence of balloons. The balloons will attract his attention and let him know there is something going on with the day, but he will block out the noise and commotion that overwhelms him by watching his movie, looking up to check in on the world around him occasionally. He won’t remember the moment, but I will. I will stand in the crowd and feel the world move around me as I take just a moment to BE there and feel all the emotions that such an occasion brings because such an occasion deserves to be felt deeply and completely. My daughter has become an amazing young woman and turns out she’s a pretty good volleyball player too; the end of her volleyball season is a huge moment in her life. You can bet I will be having all the feels and then trying to hold it all together to get through a really big game.

And then the season will end, and the rest of Senior year will march double time until Graduation day. I wish I could slow it down; but I can’t, I can only be an active participant in what is happening now and hope it is enough to cement my own memories for the days ahead when the world turns and my girls are out in the world and living the lives they were created to lead. My sweet boy will miss them, but we will do that together and still forge our own path into the life and adventures that will make up the rest of Bradley’s life.  Because that is how life goes right? 

Happy Sunday Friends!  

31For21 Challenge for Down Syndrome Awareness. 

Day Two!

 October 2, 2021

We spent the year at home. We had talks of returning to school after the Thanksgiving break. Though some schools in our area went back, ours didn't. And it wasn't too bad, we weren't exactly on board with a return to the classroom, and it had little to do with COVID. Bradley's teacher decided to retire; because can we really blame her? But that left us with one more year at the Elementary school with a brand new teacher who seemed really nice; and probably was great, but that is so hard to send over a Zoom session to a little boy that is only interested in the kind of electronics he can control. 

Our first class session was pretty good, Bradley was interested and paid attention. after a five minute introduction we signed off and he went about his day. Imagine his concern when I made him sit down the next day, and it was longer than five minutes. He just kept looking at me as if asking me, "Why does she just keep talking? And when can I be done with this?"  

The Feelings - for Bradley he was always cranky, angry cactus...

Well, we couldn't be done, and we had to keep coming back - three times each class day. We usually chose one session to attend successfully and conceded the other two; way too much to ask! But given his attention lent to how many tokens it took to get a popsicle or a cookie...we knew there was definitely a compromise and a different way forward to be found for him. So we decided to stick with Plan A. 

Three mornings a week he did Occupational Therapy, Feeding Therapy and Speech for ninety minutes. Then in the afternoons, he had Behavior Therapy four days a week. We were starting to see him blossom with his morning therapies, so we decided that he was getting so much more from them then he was getting from any of his Zoom sessions at school - so we decided that we would fit Zoom around that schedule.

It worked well for Bradley. He only went on Zoom on Tuesdays for class. Then two days a week he would have individual sessions with a Speech therapist and an Occupational therapist from the school District. He hated the Zoom part; but he liked them, and he would work for them. So that was how our year went. 

The school brought the kids back to his class right after Spring Break. 

We were so divided on what to do. We were considering sending him back to school but in our area, our kids start middle school at 6th grade. Rather than send him back to his elementary school to get used to a new teacher and a new classroom for five weeks; we decided to keep him home and when he went back to school it would be a completely new school, teacher, and routine. What can I say, we really just wanted to isolate all the negative behaviors associated with the changes in one space of time.  We really didn't want to do that routine twice. So when Bradley finished the school year, he said good-bye to his elementary school and after summer he started at the Middle school. 

We've been in school for a little over a month now. The first week we had a tiny class of five kids, but then they combined his class with the another class and now there is one teacher for a class of nine kids. So all that work breaking in a new teacher was for nothing - and then we had to break in a new teacher all over again. Sigh! 

But Bradley gets to ride the bus every morning, which is his favorite thing. And then he gets to ride it home three days a week, the other two I pick him up early and take him to therapy. He is picking up more words and he is starting to really develop his personality and his preferences with intention. He has always known what he wants and what he doesn't want, but we have seen an increase in more targeted requests as he tries to understand the world around him and make his choices known. It is not always a quiet request, or an easy request, but that's okay. Any time he is giving us his feedback and helping us to understand and fill his needs, then we are closer and closer to helping him more fully communicate.  

We're getting there Bradley! You don't give up and we won't either.  There is a whole world out there that we are going to help you enter and navigate successfully, we just have to work hard, be patient and never quit trying! 

Until tomorrow! Happy Saturday Friends! 

31For21 Down Syndrome Awareness Blog Challenge 

Time to Rock October and Down Syndrome Awareness

Day One!

Hey everyone! 

It's time again to jump into the 31 Days of Blogging for Down Syndrome Awareness...31For21! 

Everyday, for 31 days I will blog about a day in the life of our family with a mom and a dad, two daughters that make the world better and one little boy with an extra chromosome that just might be the reason there is still light in this world. Side note...I am partial to my little loves and might occasionally exaggerate how incredible they truly are; but only occasionally...most the time they are as amazing as I make them out to be. Doesn't mean that they are perfect, or never have a bad day, or sometimes just aren't little butts - but these kids are the best at being who they are and growing into being the best versions of themselves that they can be; for me, that makes them pretty incredible kids. 

In the past year; we have tackled some incredible challenges in our family, and not all of it is because of a Pandemic. Life has certainly taken some turns that we never expected and some we planned for and never saw come to fruition. But I can say with great Relief and Grateful acknowledgement of a Higher Blessing from Above that has kept this family together, safe and mostly happy...through the past year. 

So as we start this year's month of daily blogs - I come to you with a 6th grader in his first year of Middle School, a Senior in High School and a Sophomore in College. Insert emoji with huge eyeballs...or I can just tell you what I see in the mirror when I think of that...me, with huge eyeballs, trying to grapple with the realizations of all this. Add to it, my Senior is one of the Captains of her Varsity Volleyball team and all the emotions that go with that...I imagine you'll hear more from me regarding that topic. Hint, hint, wink, wink. And my Sophomore is interning at the hospital as she hones in on her desire to follow a career path into nursing. Meanwhile, my sweet Bradley is tackling Middle school - really big gulp! 

Eric and I? Yeah we got stuff too. From Eric going back to work and me working from home, we are just trying to stay afloat, and stay completely engaged so we don't miss a moment of the lives these kids are living. Having a front row seat is a Blessing, but also can be a tough one to hold down, though we will never be empty nesters we will be sans two girls in the blink of an eye. So many emotions as we have to let them make their mistakes but be around to help them navigate the ups and downs whenever they come to us for help.

Anyway, I hope you all enjoy the month. I hope you pull out your blue and yellow to wear to support Down Syndrome Awareness month. I hope you share about Down Syndrome, how it can be such a Blessing to have a baby with Down Syndrome because of the great adventure of raising that baby into the incredible person he or she will become. Not easy, but so worth it! 

Welcome to the first blog in the 31For21 Challenge. Thank you for walking along with us on this path and sharing the journey. See you all tomorrow!