Fire Watch. Yep, Again.

So I’m introducing Sydney to “Downton Abby”.  There are so many questions to be answered, I had no idea how hard it would be to introduce her to English Aristocracy.  But she is taking European History so in an effort to help her wrap her brain around it all; here we are, me always enjoying it and her asking me a million questions about it.  Someday, when she is older and have children of her own I am hoping that she will pass along these moments, and I’m hoping those moments are good memories.

The rest of the day was spent on fire watch.  We already were on a half day with the High schoolers because of the wind and poor to dangerous air quality.  Bradley was to be at school the whole day, which was to be until 1:15.  So I put him on the bus and then came in to watch the news on the latest fire that is a little closer than we’d like.  First came the phone call that Sydney couldn’t get her retainer today because her orthodontist couldn’t get to the office.  We’ll try again tomorrow morning.

No sooner did I get off the phone, when there was a knock on the door.  Sure enough, the bus was back and his aide was knocking to let me know that the bus was called and told to take all the kids back home.  So off I went to fetch Bradley off the bus.  He and I spent the day together.  At one point, he and I got all of his blocks and built the coolest, and strangest looking house possible, with a door in the attic and a window on the back of a lego fire truck.  When he grew bored, he decided to throw all his blocks and tiles..so it was time to clean up.  When I told him, he got down and helped me clean up all his tiles and blocks.  After all that, he wanted his movie instead of any more of  that hard work.

We had a pretty good afternoon, he and I strongly disagreed with Bradley’s insistence that he should go outside, and I felt strongly that his being outside would only effect his health detrimentally.  We argued he and I, and there might have been some crying and yelling - we don’t really need to point fingers about that, but we got through it in the end.

Sadly, the fires and the weather will prevent the kids going to school tomorrow, and no costume parade for Bradley for Halloween.  And more than likely, he and I will have further disagreements regarding me not letting Bradley go outside to play.  The worst though, is knowing that the winds will likely keep Bradley from being able to go Trick or Treating this year.  We will look into the hope that we can take him to the Mall or something to find some place where he can practice his treat gathering.

I guess time will tell.  For now, Sydney and I are busy delving through the corridors of Downton all  while waiting for Madison to return home from her date.  Yes, she had a date tonight to go to a Haunted House.  Hmm, can’t wait to hear how the evening has gone.  😁.  Downton and date details...what a great way to end a night.

One more day in the Challenge.  Happy 31 For 21 Blog Challenge from a very Windy City with such terrible air quality.  Good night all!

Stressful Well Child! Ugh

Spent two hours at the Pediatrician’s office today.  The first fifteen minutes were spent waiting, then we got called back.  He did his weight and his height, and then actually let the nurse take his blood pressure.  Then she asked the other nurses if he could do a hearing test, and they said no.  Then she comes back around the corner to me, “Can he do the hearing test?”  Cue my “Seriously?” Face.  I’m fairly certain that I managed to drop my face so the girl couldn’t see my reaction, and just merely shook my head.  Then she asked if he could do a vision test.  I told her he doesn’t say his letters.  She’s like, how about these pictures, will he say house and stuff.  Um, no.  My non-verbal son will not identify your tiny black and white barely recognizable pictures.  Make them bigger, in color and with some actual detail and he just might.  But not today.  I just said, “No, not really.”  I’m trying to be nice because she is new.  Like this might be her first job new.  And the thing is this; sure it’s a bit frustrating, but I know what’s coming for him and me, and it’s just not worth the energy expulsion. Trust me!

We get to the room and she wants me to get him down to his diaper...which is fine, except the doc takes another twenty minutes because he lets me know he’s running a flu test and doesn’t want to have to leave Bradley once he comes in.  So we hang out, but by the time the doc comes back in, we have a onesie back on and Bradley is pleading his case that we should just go home and come back, like never.  But I am pointing out to him it is just a Physical AND, his ear is dripping fluid...so probably an ear infection, so... we gotta stay.

In the interim, we hear another kid screaming and crying...like super loud.  Like, maybe that kind of place should consider a tad bit of increased soundproofing in the rooms... so that maybe my guy doesn’t start crying because your kid is screaming.  It’s just a thought.  So Kid in the other room keeps screaming - mortal terror screaming, and I am feeling a bit uncertain myself.  When they finally leave, turns out SHE - says she’s never coming back, and her sister tells their mom, she isn’t ever coming back.  I desperately am trying to not laugh out loud because my guy is terrified by the screaming and jumping at every sound now.  Sigh, lots of back rubbing to calm him down.  He settles down back on my lap, just resting.  When his doctor walked in, he jumped out of my lap turned around and burrowed into my lap, arms tightly around my neck.  Sigh...

So doc and I talk about Bradley, and Bradley relaxes again.  He even allows for all kinds of testing, eyes and such...but then doc wants to check out that ear.  Oy!  It’s like wrestling an octopus.  Dear God Almighty.  I am exhausted, and though I had the heavy lifting of holding Bradley down, his doc was great about contorting into position in order to get his ear cleared out enough to see in.  He saw fluid.  As he got himself back together, I’m thinking “fluid?”  I didn’t say it, but he saw it and laughed.  “We’re doing drops.”  He blows out a breath, “He’s strong.”  I just nod my head, “Yeah.”  And laugh too.

So we finally leave at 4:20.  Happy that Bradley is growing as he should, all his labs have looked good and he’s on schedule to get into all his other necessary medical appointments.  The day ended with ear drops in and snuggle time with Dad.  We’ll see if that screaming kid or his own screaming follows into his dreams, I’m hoping that he is too exhausted to care.  I guess time will tell.

It’s okay.  We have a little boy growing into a big boy, he has an ear infection yeah, but it’ll go away. He has to put a little weight back on; cause he dropped a bit, but that Roseola rash was no joke.  And his new doctor is getting to know us pretty well, he is relaxing around us and we are having conversations.  He’s always been nice and earnest, but he gives me more information now, and trusts me with more complicated explanations.  We miss the pediatrician we had, we made a great team.  It’s a relief that we have created a new team and we feel pretty good about it.

It’s been a long day for the 31 For 21 Blog Challenge.  But my boy is doing well and that’s all the matters...even if mom is trying to decide what she needs more...an adult beverage or chocolate... hint - probably chocolate!  😉

Night all, thanks for checking in.

Dirty Face and Giggles

It’s the last Monday in October, it’s the last Monday in the Challenge.  It wasn’t a bad Monday, kind of quiet actually.  And that’s a nice break.

In some ways, Bradley is just like any typical little boy.  Dad is the center of all things cool and that being the case, where dad goes he wants to go too.  Today, when Eric got home from work, he went outside to use the blower to get rid of all the leaves in Bradley’s turf, and the new pavers in our recently completed backyard.  We didn’t get crazy creative back there, but we did get rid of most of the dirt.  I know; some think that’s a horrible thing, but for our needs, it is mandatory.  Keeping Bradley safe is the Priority.  If we keep him safe and we keep the space clean and nice, the girls will bring their friends too.  Our plan is to get chairs out there, maybe a table, and a fire pit.  Then the family can sit out there together on the good nights.  The girls and their friends, or Eric and I after putting Bradley down for the night, and if they are nice the girls can join us too...we’ll see.  Just options.

So back to after work today.  Bradley sees Eric outside, and like a good dad, when Bradley tries to join him, Eric makes sure Bradley’s shoes are on the correct feet and lets Bradley trail along with him.  From what I could see, Bradley was the line boy, making sure the cord didn’t get tangled.  Or maybe tangling the cord?  Perhaps trying to unplug the whole operation?  Who knows really.  Whatever, it worked.

Once the blower was put away, I walked outside with them and the first thing Eric told me: “He needs a shower.”

I took one look at Bradley and started laughing.  Yep, he did.  Filthy hands, filthy face, filthy body.  I look at Eric, he’s clean.  Before I can ask he starts chuckling: “He ran in front of the blower, took a shot from the head down.”

Bwahaha.  Cracked me up.  All boy and all dirty, just as he is supposed to be.  But I will say, he wasn’t overly excited to be so dirty, he kept trying to clean his hands and trying to clean his face by wiping it on my shirt.  Then rubbing his hands through his hair to dislodge the dust.  But despite all that, he kept smiling and giggling, so I think it was worth it for him.

He didn’t object to the shower that followed, or the loss of the leaf that was down in his shirt either.  Instead, he got cleaned, he got dressed and played for a bit before he decided to try chocolate pudding AND Chips Ahoy cookies.  He ate all the cookies and half the pudding.  It’s a win in my book.

So yeah, not bad for a Monday.  Not bad for a break in the winds for Bradley to get some play time with Dad, even if Bradley was the only one thinking it was play time.  😉

Happy Monday, night all.

31 For 21 Blog Challenge.  Because some days are just good days, for no other reason than they just are.  ❤️

The Seasons of California - All Five...

Unfortunately, we have the strangest seasons in California. We have Spring which is part beautiful and part mostly socked in in the coast with fog - it has its own name, June Gloom.  Or at least it was June when I was a little kid.  Now it extends from late April to end of July.  By the end of July we are starting summer which is weird to have overcast heat.  Summer extends all the way through to October, because it takes a small break to give us one nice week and we think it’s Fall but it’s not... cause it gets hot again...  until we get a brief break of fall weather, and finally some winter.  A good winter lets us pull out parkas for a brief reminder of how much we love our jackets and wish we could wear them longer... in a day, in a season.  Even our coolest days tend to warm up.  So we’re later people, lots of layers.  And then somewhere along the way we get Fire season.  The way the wind blows in this state you have to hold your breath when it starts and just wonder where the fires will hit and for how long.  The last three years it’s been a month earlier each year.  For us the worst was in December.  Last year was November and then this year, October is hitting areas hard.

We live in a small bubble.  Oddly, we are mostly protected.  Three years ago we were completely surrounded by fire in three sides and water on the fourth.  It was disconcerting to say the least.  But no fire threat really.  But like any bowl, things pour in.  We were inundated with smoke and dangerous air.  Three years ago, we put in AC.  And thank God we did.  We can keep that giving the kids safer air to breath when they are in here.  My oldest spent exactly ten days in school in December that year... the other two maybe two days more.  It was incredible.  The early Christmas decorators were the only decorators.  The fires started Dec 4th and raged on.  After that, Christmas was a quiet little celebration of sheer gratitude for those is if not affected by anything but smoke.

We were not put under evacuation orders, but we were getting into a closer area of suggested evacuation because of air quality.  We watched and waited.  Keeping Bradley occupied while I packed was a task indeed.  I put the girls in charge of brother while I ferried our medicines.  I started with Bradley’s, then Sydney’s, and then Dad’s.  Enough to get them through for a month, some are three month supplies in one bottle which is even better.  Even Express Scripts can find us before the need gets dire if we had to bug out.

Once meds were done, it was the medical equipment.  Feeding pump and nebulizers.  I could bolus everything Bradley needs, but what if the changes and stress stops god intake completely...  his pump,  pole for the feeding pump, his pump backpack (for when he wears it all), and the bags - two different sizes.  And then I set aside the cases of his food.  Yes, I could buy this at the store but when you are evacuating, you can’t be certain there will be opportunity or supply.  Last, I added his water and his juices.  Why juices?  His tastebuds back then were really dulled, even today he is not great at straight water, we’re working on it.  But juice wise I try to get in extra vitamins as much as I can, especially the super Bs!

Then, it was the paperwork, stuff we had to have or have a harder time replacing.  Like Consular Certificates of Birth Abroad - we got two kids with those... that’s an Embassy request.  Good reminder - need to get copies ordered.  And then I had to stop and think.  Jewelry.  Of course... the sentimental value alone supersedes some of the actual values, but those were important factors too.

For the last part, I have the girls duffel bags and we instructed them to get three days worth of clothes and get them in the bag.  Then I checked their bags, lots of room.  So then it was extra clothes and special personal items.  For the most part they were really good about it, I only kicked out a couple posters and some random items that were easily replaceable to make room for more important items like contacts and other necessities like glasses... and a toothbrush, a hairbrush... a jacket, a couple sweatshirts.  Knowing how Bradley can go through clothes, and luckily his still small size - almost everything of his fit in his bag... a good thing.

We never got to the point where we were loading...just to staging.  Bags were kept against their bedroom walls where they were ready to be grabbed.  The medical equipment was readily available for use, except the extra IV pole we have is always boxed and ready.  Blankets folded and sitting on the back of the coach, always ready to be grabbed last.

From there we waited, ready to be ready to load.  And the fires raged on and moved away from us.  So instead of loading us up, we went and loaded up the van with essentials from the store- and we took them to donation spots to try to help those who had to rush out and had nothing.  We did soap and shampoo, socks and diapers... tried to think of the things most needed and least donated.  And as we handed them off we said a prayer for those in that need and a prayer of gratitude that we weren’t, that somehow things turned away from us and we could still be home.  Safe from the fires and eventually, safe enough from the smoky air.

And now every year, we watch and we wait and we judge distance and smoke levels and are ready to do it all over again to prepare to get my respiratory compromised three out of harm’s way if necessary.  Because we aren’t the ones that wait it out.  We’re the ones that they say you should considering leaving and we would.  And if the smoke filled air isn’t kept from inside the house - then we go.  Taking chances with Bradley and Sydney aren’t an option.  And if Dad hadn’t been safely at work almost on top of the water everyday - we might have gone anyway.

We were very lucky.  Our struggle was keeping one active, little boy occupied at Home.  So not a struggle...just a challenge.  We were Blessed and watched over for sure.

31 For 21 Blog Challenge...there are no end to the extent and the amount of challenges in this life.  Always watching these winds and these fires, and always praying for the safety of these fire fighters, first responders and silly news crews that just keep getting in the way.  Sigh...

Time with the UCSB Gauchos

There are some days that somehow work out so much better than you hope.  Today was one of those days.  And sometimes, it’s a blink in time and you just feel gratitude for the gift.

We hear about the occasional events for the special needs community.  We try to take Bradley to all we can.  We’ve loved when we can get him involved in different events, especially when we are able to help him overcome being shy and his tendency to cling to one of us.  Challenger baseball was a big step for him.  He had some success and though he wouldn’t go out on the field without his sister, he still went out without Eric or I.  Big steps for a shy little guy.

Santa Barbara tends to offer more opportunities for Bradley then down in our little town and county, so I hear about opportunities up there.  There have been a bunch: but time, circumstance, and Bradley’s health have all managed to prevent our participating with him.  Most of the time, the events have either been during the week, or on a weekend day when the girls have had volleyball.  A few times, he was just too sick to go and I believe one of the fires created air quality that we couldn’t take him out in, and then winds have prevented us a time or two as well.

Another chance today.  I heard about the event over a month ago and I have had it on my calendar.  The UCSB baseball team was hosting a Fall Sports Day for the Special Needs Community.  It was another perfect chance for Bradley, so I was excited to take him and I was afraid it wouldn’t happen this time.  We have had fierce winds whipping through at the same speed as hurricanes, and with them terrible air quality that makes the outside dangerous for Bradley, and his sister and dad.  There were fires up near there, and then those were taken care of and so it looked good the event would happen.  It was scheduled for the late afternoon which was perfect because Madison had her ACT this morning and wouldn’t be home until after 1:30.  But I was still worried about the weather, the winds, and the air quality.  I looked into all three, and going into Goleta on the edge above Santa Barbara, was probably the best place for all of them today.

We rushed out, and made it - but about fifteen minutes late.  But no one seemed to mind.  They gave Bradley a name tag and as we walked out onto the ball field, he was immediately interested in this humongous beach ball.  As he made a beeline for it, the girls asked if I wanted them to go with him, I told them to wait.  Then a couple of the players moved towards him and engaged him right away.  They laughed with him and played with him, helping him push that huge ball all over the field.  He went from one ball to the next, all these different size and different type of balls.  The he discovered rockets and that was the most fun!  He started to get a little tired, so Madison took him some juice and that helped him revive, and he went back to the balls.  A little bit later, we got him over to the small scale ball diamond and they set him up to hit off a tee, which he likes to do, though he has forgotten all of his technique - like, hold the bat with two hands...  but another player was there to teach him and though he was slow to grasp the concept, he was listening and receptive to a new friend.  After he hit a small bunt, 😉 he wasn’t keen to run at first...but Madison took his hand and off they went.  The team cheered his name and directed him around the bases, where he stopped about two feet from home, he tossed his new hat, and ripped off his name tag.  Madison gave him a lift the last couple feet and as soon as he touched home plate, he sat crossed legged on top of it.  Time for another break.

He went back to the field and all the balls.  Out there, something amazing happened.  Bradley put his hands up for the players and someone would help him up on the ball and then keep it steady for him to sit.  And then he’d come down, and on the way to another ball, we saw him holding hands with one player that he seemed quite attached too.  #27, you don’t even know how special that was that he chose you.  Like watching a flower bloom, Bradley was interacting with players and doing it on his own.  He wasn’t shy and he wasn’t nervous.  He was relaxed and calm, interested and interacting with everything and everyone that come to him.  And Eric and a I just watched from afar, proud of him and marveling at how open he was to the whole experience and all the players.

At one point he was so comfortable on the ball that he tossed off his shoe and socks.  Good grief!  So I sent the calvary and the girls went and got his socks and shoes back on and after he was helped back down, he looked at them and waved and said: “Bye!”

When it ended, he was pretty tired and ready to quit.  But without protest, he joined the whole team and the other participants in a team huddle; I lost sight of him as they moved him into the middle for their cheer.  But then as they broke up and started to move away, they called him back for pictures and he sat on the knee of a player in front and took a few before he was just tired of sitting still and bailed out.  But he did it all, not perfectly, but no one said it had to be.  Those young men showed such kindness, such patience, and such friendship. My heart is so full it might be overflowing a bit, but that’s okay; mom’s sometimes do that, especially when a group so completely Blesses your child.

Not enough words to say thank you.  We watched out boy hit some amazing milestones today.  We’re so proud of you Bradley!  And we are truly grateful!  Time to get Bradley a shirt for baseball and plan to get our little family to a game to support his new friends, it’s the very least we can do.

So go Gauchos!  From your newest fans!!  And thank you so much!!!  

A very happy and exhausted little boy is crashed out tonight.  And this momma can’t stop smiling!  #ucsbbaseball #blessedbygauchos #sograteful

Saturday in the books, another day in the 31 For 21 Blog Challenge!  So happy for my sweet boy!!!  

UCLA Volleyball Night!

Go Bruins!

Friday night was college volleyball night.  Thanks to the girls’ High School Volleyball coach, the High School players got to watch a game for a dollar.  And what a great game!

UCLA Lady Bruins are unranked and were up against the undefeated No. 2 team in the nation, Stanford.  And the Bruins pulled off a three game sweep for an upset, all very exciting.

The girls rode together in a van with the Coach, while Eric, Bradley, and I drove down taking a friend and his daughter with us.  We all met up and walked through the student store.  Bradley chose a shirt to support the Bruins and ouldn’t wait to wear it.  Then he sat patiently, though not wanting to eat while we all had dinner before going in to see warm-ups and the game.  Pauley Pavilion is quite large and we were somewhat surprised to see such a full house.  Surprised, but oh so pleased.  Ladies sports don’t get nearly enough recognition and now we all wonder where or if they will survive this new agenda.  But that is another topic entirely.

The girls sat with the team, and Bradley sat between Eric and I.  He was interested in the the people around him, saying hi to a few, but after a bit he requested his movie and we got him set up with his movie and his headphones and he sat crossed legged in his chair while we enjoyed the game.  And we did enjoy the game.  At one point, we kind of smiled at each other and acknowledged between us how much Bradley has grown up and developed to the extent that he was willing to sit with us.  To see him looking up and looking around, was such a joy, interactions are the best sights with him.  He would look up and copy fans by occasionally clapping and holding up his finger on game point like everyone around him.  We’ll shrug past that whole little “ooohhh” in the middle of the National Anthem, mostly because we’re pretty certain that he was trying to sing along.  😉.

After the game ended, there were plenty of pictures and such while the girls enjoyed being able to stand on the gym floor, feeling the awe of being there, of standing where one the highest level of game play had just dominated the floor.  Definitely some awe for sure.  About then, Bradley wanted up and his head found dad’s shoulder and he was out for the night.  A friend of ours was watching the game on tv and told us she saw a cute but sleepy little guy with his head on a dad’s shoulder and realized it was Bradley.  So yeah, he was ESPN 2 famous for about ten seconds last night.  😁. He seems unaffected by it though, fear not.

We got home long before the girls, got him settled into bed and barely kept our eyes open until his sisters finally got home.  In a rare feat, Bradley actually slept through the night, which was so appreciated by his mom and dad.  I know I needed the sleep for sure.

Our boy is growing up.  He walked most of the time, only getting a lift once in a while and then of course after the game.  But that was big.  And when he didn’t need to hide away from the noise and the commotion, that was even bigger.  Granted, if the match had gone to five games - well, who knows what he would have done and how the night would have ended.  But, it was a great time, a great night, and such a success for our little boy.  Definitely a win for Bradley and us!

When he starts growing and developing - he sure does it in the best surprising ways and moments!  31 For 21 Blog Challenge - grow buddy grow!  So proud of you!

Sweet Dreams

Now we lay him down to sleep, and hope that through the night he will sleep.  We pray that we are given yet another day: to laugh, to love, and to teach him how to play.  And in the morning when he rises, may he embrace the day, and all that comes, knowing that mom and dad are truly on his side.  For all the things that happen in his day, we can only pray that we are there for the tough stuff, the days that don’t go so well, and that somehow our presence will make the moments better.  We pray that on the better days, that he sparkles from the light that shines from deep within him and that those are the lights that carry him along through each day.

Small moments, and large, truly doesn’t matter; each moment is part of the bigger picture that makes his life.  The friends that he plays with at recess, the three other kids that have Down syndrome that gravitate to each other and the language that the four share during their interactions before they play.  The teachers that he sees daily, therapists that spend three days a week with him, and the doctors - all the doctors that see him.  Good days and his worst days, the doctors that keep him healthy and return him to better health.  All parts of the whole that help to mold the days of his life into the world that he lives in.

He’s sleeping now and we’re watching the news of the fires burning in So. Cal again and we watch and wait and have to decide how bad the air quality is going to be, how dangerous the winds before we determine if he is able to go to school tomorrow.  And going to school means the bus, which he loves, but the winds are so bad his respiratory health requires him to stay indoors, which he hates - a day of unbalance already.  A day of frustration as he just doesn’t understand why he can’t go outside and play.  Frustration that he has little ability to control his emotions or maintain his calm.  A litany of “nice hands” following him all over school trying to help him contain his anger and his sadness so he doesn’t hit or pinch his friends or his teachers or himself.  Frustrating for all of us really.

But at the end of the day, the good and the bad, it all blends together into the the little ball of energy, piss and vinegar, sugar and spice, that makes up the little boy that wraps us around his little finger and embeds himself deep into our hearts and souls.  Life is challenging with him.  Life is challenging with the girls.  Life is frustrating with all three sometimes.  Life is better because he is in it.  Life is better because we have the girls.  Life is life, and all the positives and negatives we have with him, we have with the girls...that’s just living.  And in the end, how you are living is everything.  And we are living every day as a day to be loving, and Bradley makes that part so easy.

And angels watch him through the night until he wakes to morning light... did you hear that Bradley? Morning light!  Come on buddy, we can do this night time sleep thing, I believe that you and I can experience the miracle of a full night’s sleep, we just have to believe in each other and the beauty of sleep!

I was going to blog about something else entirely, until I looked over and saw how he fell asleep tonight, then I was struck again by how sweet he is when he is sleeping.  ;-).  And how much I love this kid all the time.

Have a wonderful night friends.  A reminder in the 31 For 21 Challenge, love wins at the end of the day, always.

Comfort is Comfort

Kids choose their comfort items...and no matter how you try to guide it, it rarely turns out to be what you want them to have.  I wanted Madison to have a bear or something, she chose my hair.  She liked how it felt in her hands.  Made for tough transitioning for putting herself to bed on her own, but she finally did it.  Sydney chose a blanket, and it was completely by accident.  She had a small “lovie” and it got left at home one trip into town to the new Target... turns out she couldn’t sleep without it, so while she was fussing we walked through the baby aisle in search for a replacement lovie.  When we couldn’t find one, we settled for the same material in a bigger super soft blanket instead of a lovie.  She loved it and fell asleep and that was that.  It’s still in her room, she’s going to have grandma make it into a coat for college, kind of like Linus.

Bradley is a little tougher.  We thought he had a comfort toy in Scout, a V-Tech dog that said his name.  Only he rolled down his window and dropped him out before I knew it when we left Balboa in San Diego headed home to Camarillo.  Bye-bye Scout.  Sometimes he likes my hair to paint or tickle his fingers.  Or, he wants to run his fingertips against the palm of someone’s hand.  Those are big sensory points for him.  After Dad has a haircut, Bradley loves to run his hand up and down the back of Dad’s hair; I can’t blame him, it’s a favorite for me too.  And the least comfortable comfort move by Bradley happens when he’s tired and sitting with Dad, he likes to rub his hands over dad’s eyebrows. Eric can see nothing and it certainly gets annoying pretty quickly, but he’s a pretty patient guy when it comes to Bradley and he’ll give him space and time, before it finally drives him crazy and he’ll adjust him to keep him away from his eyebrows and onto fingertip tickling instead.

We have a weighted blanket for Bradley too.  He used to ignore it; but now, he uses it every night to settle him down and help him sleep.  When I get up with him at night, he climbs back into bed and lies back on his pillow, and before I can ask him if he wants his blanket, he’s already pointing to it.  He gets it back, he snuggles under it and goes back to sleep again (usually).  I am considering getting him this new sensory sheet that is being reviewed as even better than a weighted blanket.  We’ll see.  Changes have to be considered closely before we do it, so we’ll see.

Everyone needs their comfort.  There is something for everyone and having spent so long wishing one kid would choose one thing and then one kid would let go of another...we have decided it is best to just let the littles; and not so littles anymore, guide the path to the comfort they need and as long as they aren’t hurting themselves or anyone else - we leave them be, and that’ll probably just be the roadmap we follow.  Considering how great these kids truly are, we’re okay with this plan.

Been a long day for doctor visits for Sydney today, so time to settle the house and prep Bradley’s day for tomorrow.  But we now have two girlies in the house with braces free, beautiful smiles - and that’s awesome!

31 For 21 Blog Challenge, comfort is necessary - doesn’t matter how many chromosomes you have.

My Foodie

I think that if we could condense the term to only include certain choices, then we could label Bradley a foodie.  My kid is a fiend for pizza.  Saturday when the boys were having their dude weekend, Dad ordered pizza.  At one point, Bradley grabbed Dad’s hand, led him to the kitchen and pointed to the pizza.  He was ready to eat.  Tonight he was insistent that we go into the garage, we couldn’t figure what he wanted but when we handed him his Speech iPad, he found pizza.  Haha, that’s right, we usually keep the leftover pizza in the fridge in the garage.

He has a small list of other favorites: lemon pudding, diced peaches, and a Fiber One Chocolate Chip Cookie Bar.  The cookie bar might be on its way out though, turns out when they changed the box, they also took 20 calories from the previous 90 calorie bar and now they are a tiny bit more crumbly then he likes.  More than mom likes actually.  Crumbly food is harder for him to handle, just like he can’t really handle soup - he can’t separate the liquid from the solid in soup.  But if I dip bread in it, he’ll eat a whole bowl.

Recently, he has figured out that he loves mini vanilla wafers.  He also loves these chips called All-Dressed, they are vinegar and barbecue.  And sometimes when the strawberries are in season, he’ll eat them for days then ignore them for days and go back and forth wanting and not wanting them.  What is interesting about Bradley is the consistent love of his core food, the food we can always come back too.  He may choose to not eat his pudding for a couple days, maybe even his peaches, but always he returns to his core.  Strawberries aren’t really in that core group yet, but strawberry banana smoothies sure are.  

Eating out has a dual purpose in our house.  The distraction of being out and about is often just what Bradley needs in order to help him be willing to try new foods, or even favorites that he won’t eat anywhere else but away from home.  One restaurant we can go to and he’ll eat Mac n cheese.  At another, it’s spaghetti or fettuccine...and definitely the bread part. If I could figure out how to encourage him to eat as much at home as he does out, we would save money and I would feel really heroic.

We keep trying every night, I use an Instant Pot, for convenience and making life easier overall, but also because we eat a lot of chicken, so the chicken from the Instant Pot is so incredibly tender that when I do get Bradley to eat, I know it is soft enough that he can eat it safely.  Sometimes I make chicken and peppers over rice...I can’t always get him to eat the chicken, but I usually have success with the peppers.  He really likes the colors or the flavors; maybe both, so we eat it a lot.  The other day I tried barbecue chicken and was so surprised and thrilled that instead of his usual couple bites he was loving the chicken and ate quite a bit.  I tried left overs the next day, and he wasn’t interested in the slightest.

So he’s either a foodie or a snob, potentially a little of both.  His life controls him for the most part.  But in his control are his determination upon whether or not he will be potty trained today and whether or not he’s going to be eating the dinner that mom just made.  There is some power struggle that happens between Bradley and us for sure.  He will often choose to ask only for Popsicles, and for awhile we really had To fight over those dumb things.  But lately, he is less interested in Popsicles; in fact, he will take his Popsicle, suck all the juice out of it and the leave the ice-icicle sitting on the table while he walks away.

He’s a fickle kid when it comes to food.  What he likes today he may not like tomorrow.  And for every time he eats something when we are out and about we have a fifty/fifty chance he might eat it again.  Certainly makes life interesting, fascinating, and certainly frustrating all at once.  And such is life with Bradley, always.

Welcome to the daily puzzle of Bradley.  The 31 For 21 Blog Challenge - understanding the challenges of Bradley.

Have a great night all.  

What A Mess!

So I shared with you how Bradley decided to try potty training without me and the pursuant removal of his pull-up and the pee graffiti on my wall, followed by the dump on my tile.  Well, I didn’t tell you that I cleaned all the carpets the next day because after rescuing him from slipping in his own mess, he chose to sit his butt on my carpet to wait for me to rescue his pull-up.  Why am I telling you now?  Well, I scrubbed the carpet severely, then chose to steam clean the next morning while he was at school, no more slipping and sliding for Bradley on wet surfaces.

Fast forward to the next morning.  I get him on the bus and his oldest sister out the door.  I have about an hour before I take Sydney to school - she doesn’t have a first period class.  While waiting, I finish picking up and vacuuming the living room.  Then I start up the steam cleaner and get to work.  Problem.  I don’t see the dirty water tank filling up and I can’t get the upholstery attachment to work either.  So now, I have basically flooded my carpet with water and carpet cleaner and have no way to pick up the dirty water in the carpet...slosh, slosh, ugh for sure.

So I take Sydney to school then come back to the house and try to troubleshoot the machine.  No joy. So next, I start researching best reviews and then which local stores have what, all while trying to now beat the clock to see if I can get it not only all done before Bradley gets home, but dry enough to be safe for him to walk around on.  A perk would be dry enough that it doesn’t get the carpet more dirty to have people walk on.  I am not optimistic on that last point at this point.

I find a cleaner I want, I figure out where to get it and I head out.  Thirty minutes, cleaner is in y van and I am headed home, but feeling a little shaky because breakfast has not happened yet.  Then I remember; October, pumpkin everything so I should be able to get a pumpkin muffin at Panera bread.  Swoop in for a quick stop to try to salvage the morning.  First I am pleased to see the same group of adults with Special Needs at Panera that were at the store I was just in.  So we all say Hi again.  And one young man sees my shirt and says: “Cool shirt.”  I thank him with a big grin.  And since I only have work waiting for me, I don’t mind waiting while they all work out their orders.

Another lady is in front of me and she starts making small talk.  I think my Acceptance brought out her acceptance, because she seemed like she wanted to quell someone else’s potential annoyance by commenting how she thought the baked goods looked delicious but she recently had to go gluten free and couldn’t have anything.  Maybe she chose Acceptance and patience because I was wearing my Down syndrome Awareness shirt that has Baby Groot hugging a blue and yellow ribbon.  Whatever it was, we were chatting.  She told me she was driving to Palm Springs for a Memorial, and I told her I was sorry for her loss and hoped the traffic wouldn’t be too bad with all the closures because of the fires.

Next, there was a comment on how another clerk came to help which was nice, but she had time to wait out the longer ordering time needed.  I merely said: “I have plenty of time, my carpet cleaner died so I had to run out for a new one mid-clean.  So only work is waiting for me.”

She replied: “Your cleaner died mid-job?”

Me: “Yes, floors are soaked and it’s a mess.”  I laugh.

She looks concerned now and goes: “I’m sorry, do you mean there is a dead person in your house right now?”

I start laughing: “No, I was cleaning my carpets and the machine died.”  We both start cracking up, “What you must have thought of me...dead man in my house and I’m just cleaning around him.”

She wipes her eyes, “I’m going to be laughing at that all the way to Palm Springs, and probably tell them all about it when I get there.”

Me: “Well, I do what I can.”

We get our orders in soon after then go our separate ways and as I sit in my car I just start to laugh and it hits me, I am living in a city well above my income ceiling when I talk about a carpet cleaner and someone assumes I am talking about a company’s person,  not about me cleaning it myself.  With the way we have accidents with Bradley so often, it would be insanity to not have a carpet cleaning “machine” to help save the carpets.

After that, the rest of the day was a bit mired.  Yes the new machine works great, picked up the water and cleaned the carpet, and the clean up was so easy I was ecstatic...but the carpets stayed wet throughout the whole day and night and into late morning the next day.  In terms of planning, epic fail.  But I will say, the whole time I was pulling the water out with the new machine, I kept picturing myself cleaning up water from around a chalk outline in the middle of my floor, and that just kept making me laugh.

Bradley trying to graffiti his name with pee and then leaving poopy moon prints on my carpet were what I thought would be the highlights of funny in my week, turns out the clean up was much funnier, and still keeps making me laugh about it.

On a side note, now I have a working machine and I am ready for the week long Thanksgiving break and the next potty training attempt with Bradley.  I’m hoping he gets it this time and I am hoping he keeps the graffiti to a minimum...but at least now I have the properly operating tool to clean up the mess, so there’s that at least.

Night all!  Happy Monday, as if Mondays can be happy  - ever!  Ending today’s 31 For 21 Blog Challenge For Acceptance and Awareness.

Sealed with Kisses

Bradley was asleep when we left at 6:30 Saturday morning and asleep when we got home at 12:20 this morning?  I’m not sure if I missed him more if he missed me more.  But when he walked into our room at 4:28 this morning, I might have been barely awake, but we managed to stumble back to his room.  He crawled into bed, and when I laid down with him, he snuggled right down with me and went back to sleep.  I might have drifted in and out a bit, but I wasn’t in too much of a hurry, but I did go back to my bed and my impending 6:15 alarm so that it wouldn’t wake Eric and Bradley.

The girls and I returned to the Relay For Life event in order to help them close down and clean up the site.  The winds hit like a freight train at 5am, so the event got smaller and smaller from then on.  We helped get the Luminaries up and tried to protect them the best we could while the wind tried to destroy them.  We mostly won.  We picked up hundreds of them, stored the cans and carefully folded the bags and stored them.  Normally, participants would return in the morning and gather their bags after the closing ceremonies.  All those bags we collected and four people came back for theirs... we found half of the ones they were looking for, but one lady couldn’t even tell us clearly what we were looking for, or who.  One older lady made me so sad because I couldn’t find hers.  They are just bags...but they aren’t just bags; they hold love and grief and that makes for a heavy bag...and for some, some small amount of healing is in the bag.  So almost everything went really well, but that still weighs.

So we finished the clean up and left the site for home.  We got home a little after noon, and my boy was waiting.  Eric said that he kept asking for me all day Saturday and even today,; so he told him, “Okay, there she is, Mommy.”

My guy came walking over, and he had full, both arms, long hugs for me.  And this is something he has only stated doing in the last few days: he puckers now, and gives defined kisses.  Defined, like a pucker and a release, maybe deliberate is the better term.  Before he would kiss you, but he would just put his mouth against your cheek and it was more a hug with his face - lately, since the introduction of that “Boo-Boo” song, he is being deliberate.  It is a pucker, it is placed, and then after he plants his lips, there is the release.  It feels like a kiss.  They have always been real; Bradley’s always given kisses...but they’re just more typical now.  They are a representation of a milestone he has reached every time he gives you one, a sweet reminder of something new.  And getting one, is a small gift but a most a precious gift.

His hugs are sometimes quick, distracted ones, and sometimes he will give big, full hugs.  Today was the big hug, the put everything aside and come straight in to wrap his arms around each of us in turn and hold tight. Each hug brought his voice and an identifying name.  It was so good to be home.  And to have him come back for more hugs after he made his rounds with the girls; yeah, definitely good to be home.

I love my time with my girls, cherish every moment actually.  But never mistake how much I also cherish my boys.  I am sure that in the wee hours when Bradley and a I meet, I will desperately try and fail to not snuggle with him longer than I should and probably encourage behavior that I will regret the next night in the wee hours...but I did miss him very much, he did miss me, and he’s super cute when he is sleepy and cuddly - so there’s that.

There is just something very special in the way that your kids choose to show you they love you so you should pay close attention so you never miss the wonder and joy waiting for you each time; it’s so worth it...

Closing down now after a very long weekend.  I’m hoping to get a nap in before Bradley comes
throwing our door wide open in the middle of the night.

Happy Sunday!  31 For 21 Blog Challenge - Down syndrome Awareness and Acceptance.

Relay For Life

Relay For Life - 2019

Sometimes you know the lesson, but sometimes you are reminded in stark reality the meaning behind those lessons.  We are supposed to live life the best we can every day.  We are supposed to appreciate what we are given.  And as much as you try to live like that, you come volunteer at A Relay For Life and you realize you aren’t doing it well enough.  Watching the ceremony for the Luminaries is humbling.  The Luminaries are lit for those who have survived, those who are fighting, and those who have been lost.  Seeing heartbreak in physical form is heartbreak in itself.  The strength in the survivors and the fighters is incredible, inspiring and oh so humbling.  We made Luminaries for Grandma for fighting cancer, and one for Dad for beating cancer.  It was special watching Sydney make them and then the girls placing them.

I helped set the first group of them down, I found it hard to read them.  When I went back for more, the person in charge was telling all of us - don’t read them.  If you want to get through this part, don’t read them.  He was right.

When they did the ceremony for the Luminaries, we stayed at the Registration table where we were working today; but we could hear the music, the speeches, and we could feel the emotion of all those that have lost, and some recently this year.  You want to hold each one and somehow take their pain away, but you can’t.  Instead, you keep helping to register people and be a helping hand to make sure that the event happens smoothly for all those that have fought, are fighting and those there in memory of someone they lost.

And you go home after, knowing that it’s time to hold a little longer, hug a little closer, and always love a little more now than then.

Signing off friends, closing up our booth soon and hopefully then headed towards home.

31 For 21 Blog Challenge... a great but exhausting day!!!

Who He Works For...

We always laugh about how there are certain people that Bradley will do just about anything for.  for example, he is most likely to mimic things like phone conversations and sounds with Sydney.  He will mimic dancing and active play when he is with Madison.  He is also about equal in being willing to sit and snuggle either one, but he just spends most of his day without them; so sometimes, he just needs those moments.  Often lately, I’ve been thinking that his brain has processed that by agreeing to give them what they are asking from him, he will comply and extend the length of time that he spends with them.  He doesn’t always want to comply, because there are times he just wants to be left alone or be allowed to interact in the way he wants.  Sometimes we all want a little bit of control over what is happening around us, he is no exception.

Anyway, Dad can usually get him to work on his alphabet and numbers...I can too, but I have to work a lot harder to pry them out of him.  As the Mom and Dad, we can usually coax or pressure compliance when he is not willing to follow along.  But for the most part, we can work him around to transition for us with relative ease.  Not in the morning though, kid is anti-morning...if I weren’t afraid it would stunt his growth and/or burn his tummy through the g-tube I would bolus coffee to see if that would help.  And sleeping or not sleeping at night doesn’t seem to change much for him either way, he can sleep at night and still not want to wake up, and he can not sleep at night and still not want to wake up.  And then, there are the mornings that he wakes up on his own and he is ready to conquer the whole world.  But those are always wretchedly early in the morning and we just never want to talk about those.  But I digress.

Bradley will comply at school, he will follow along with what is asked of him...and then some days he just refuses to listen to them or us or even his sisters.  When he goes to therapy, he is mostly willing to do what they want him to do, mostly.  But they are really starting to figure him out and work around his struggles and get him through the non-compliance pretty well.

Here’s the thing though, turns out that every little boy in Bradley’s class; especially Bradley, is fascinated when they bring in a male aide to help in the classroom.  The teacher and the regular aides just laugh and shake their heads whenever they have one of the male aides in the classroom for the day, all because the students are willing to do whatever the male aide asks of them.

So here’s my plea and my hope.  I am hoping that more young men will choose to go into Special Education.  For the same reason that male teachers are so important for Elementary school students, and Junior High School... young boys need to see other men taking on the role of teacher and mentor. And our kiddos with special needs are even more in need of being able to look up to a male teacher, aide or mentor.  Bradley’s daddy is his hero and he loves him more than anything; for him, to have a male to look up to at school would sure help him in so many ways.  Bradley is interested in a male role model other than his dad; he wouldn’t suddenly be perfect at school, but he would be fascinated by a new friend for a little while, and then I hope that he would want to keep learning from him. Or maybe, given the way I believe Bradley chooses to extend his time with his sisters, he might choose to work hard and extend his time with his new friend.

Unlocking the mind of this precious little boy is a constant walk through a very elaborate and complicated maze.  Our toolbox is constantly being refilled with different tools to use in order to find a key to try to understand the parts that make up him and help him grow into the person he is meant to become.  And if a male mentor at school can help with that, then I sure wish there were more men working in this field and helping Bradley and his friends wanting to learn and willing to learn a little more everyday.  Every lock has a key, and for Bradley, this seems to be a recurring key for him.

Happy Friday All!  Another day in the 31 For 21 Blog Challenge.  It’s the little things that sometimes are the biggest things of all.

Deleting Website Histories...

I constantly try to monitor what Bradley chooses to watch on his iPad.  And he constantly tries to keep me from monitoring.  I will delete histories of things I prefer he not watch, and he manages, maybe remembers how he got to those things that I would prefer he not spend all his time watching.  And there are sometimes that I delete history on things that I just can’t stand to hear anymore.  Deleting history on Ryan’s Toy Review, or now Ryan’s World – was I have to admit more about dislike that anything else.  I feel like that kid has made enough money off of my kid, but his millions a year aren’t just from my kid, but enough dollars are from Bradley that I sometimes I think I might be deleting out of spite.  I don’t know, maybe make that kid work for it a little more.  Take a pay cut for a week until Bradley finds him again.  Jealous much?  Well, yeah…duh.  Rubbing my face in the fact that they have made so much money that dad stays home and plays too…whatever, over all of you…see you next week when Bradley finds you, AGAIN! 

Bradley likes to mimic too.  But he’ll watch something once and mimic or he’ll wait and watch something a million times before he decides to mimic it.  Like the little boys that make up all these Nerf gun wars… ugh!!!   The first hundred times it’s all right but after that, you notice the scripted acting that isn’t that great because they’re just kids…but you let it go, cause they are just kids…and then you realize that they are making money off of you as you watch so then you want better acting since you are paying for it.  But then Bradley goes looking for his Nerf gun; leaves the annoying boys (and the iPad) behind, and I watch him trot through the house doing what he perceives them doing… them just running back and forth with their Nerf guns, usually in the dark.  We spend a lot of time turning lights back on when he is into watching those boys.  Delete and see them again in a week. 

Then there are the little nursery songs.  And the Boo-Boo song which is annoying after the second time hearing it, but gets played in a loop anyway.  What does that teach him?  Hmm… He will tap his elbow on his iPad and look at one of us and say “Ouch.” Then push his boo-boo our way for a kiss.  We comply.  He’ll copy their body parts and we will kiss each boo-boo.  Then my head will feel like it is just one big boo-boo and I will move him to something else.  I don’t delete this one.  Here’s why.  Bradley really has a high tolerance for pain, he has to hurt quite a bit to let you know.  He’s learning to realize what these little bumps and bruises are and to come to us when it “hurts”.  Actually, a pretty big learning moment each time.  He also has discovered that others have boo-boos too.  Tears need kisses, and bumps need kisses too.  Lately, when we bonk noggins, he will then force my head down (a whole other boo-boo actually) and then kiss my head where we hit.  Same with other areas: elbows, fingers, knees…  you say ouch and he is going to kiss where he thinks your boo-boo might be.  Usually it’s your head.  You may hit you foot, but the top of your head is where you actually need the boo-boo fixing.  It’s all a science I promise. 

What else does this do?  When he actually hurts something, he is taking notice, and when he starts to cry, he comes to one of us.  Finally, we are getting some recognition and understanding.  We are hopeful that this will lead to inquiry: “Where does it hurt?” And response: Indication of pain at the correct site… ears, mouth, nose, stomach… wherever.  The ideal is that if he does feel pain, he’ll tell us by pointing to the problem spot thereby ending the constant guessing game as we try to determine the cause.  This is most especially fun at a doctor appointment.  “Ears hurt?”  Mom: “Maybe?”  Blank stare… “Sorry Doc, you ask him and see what you get.” 

Doc: “Do your ears hurt Bradley?” Blank stare… “Okay, let’s check your ears.” Uh-huh.

It’s a work in progress.  Life is a work in progress, some days there is a lot of progress, some forward and some back…but as long as there is movement, I guess it is what it will be.  We don’t always get to move forward with Bradley, some days it’s more like trying to stop a slide down a particularly steep and wet embankment while wearing brand new dress shoes…but life is what it is and you make the most out of the one you are given or you let yourself slide all the way back down to the bottom. The parenting is no different: help your kids learn life skills, how to take care of themselves and move along in this life in what we hope is a positive and successful motion. The basics.  Only thing different between the girls and Bradley is the timeline, he just needs a different timeline.

So, one step at a time.  One lesson at a time, sometimes from a silly nursery rhyme, sometimes from one of us… sometimes from some over paid little kids playing in a video…  (grumble, grumble, grumble…but thanks) but every step is important and each one is needed to help him learn the basics…and start to be more independent.  Making others very rich is an unfortunate side effect that I am only slightly annoyed by…maybe moderately… but I’ll get over it eventually. 

Happy Thursday all!  Thanks for stopping by the 31 For 21 Blog Challenge.  See you all tomorrow!!! 

 

Volleyball Senior Night

Our family experienced a new first today.  As the oldest, Madison is the pathfinder...the one to step into new territory because she has too.  This time around, Sydney carved the path for High School ball, and they climbed that mountain together.  But tonight, tonight - Madison had to stand on the top alone.  Tonight was Senior night,  the first of many firsts to come for us as we embark more fully into Senior year with her.  We ordered the ring and the announcements, and last night she received an Academic Award for keeping her gpa up for three straight years, so that was awesome.

And then there was tonight.  We ordered banners for the seniors, these huge things that had her picture and her name and number.  I was a nervous wreck because I had to put all together and choose the picture, but in the end her picture turned out well and she was pretty excited and perhaps a bit overwhelmed at the sheer size.  We also had these big heads printed to wave at them, which were fun and made her laugh, so that was totally worth it.  We were told they would be getting flowers, so we didn’t get her any flowers - but that was a bit off.  They got a single rose from the team, and because Dad is quick on his feet, a dozen from us.

Bradley likes the Big Head the most, he was trying to feed her mouth I think.  Or maybe he wants to just shove his hand in her mouth, but when that didn’t work he turned his attention back to his movie.   Haha.  Then later he was ready to eat a quesadilla and then call it a night, oblivious to the incredibly loud gym that he was in the middle of.  With some planning by the coach, there was free pizza for students, and a little nudging and the Basketball coach brought his team in and a bunch of football came by, the ladies were there too...soccer and cross country came to support too.   Biggest crowd of the year, and it was so much fun for all of them.

Downside?  Sydney is really sick.  She almost passed out at school and home, and when she tried to get ready to go just to watch, she was incredibly dizzy and her temperature shot up, so she was out to bed instead.  And we were quite bummed not to have all of us together on such a special night.  And
then Madison got to play all of game one and most of game three, and she played better than we’ve ever seen her play.  And I know that sounds biased, but we had so many smile at us and comment on how well she played, how much more she should have played...so it is our bias, but it isn’t completely out of place.  So that makes it even better, for her and for us.  

Other downside, all things come to an end.  Season is over.  There may be one more game if we get the “at large bid” but it is a long shot, so we’ll just have to wait and see.  That game won’t be at home and she probably won’t see playtime in it, so this was a big night for her, for our family.  Another reminder that she’s a Senior and on her way out of High School in just a few months.  All the early
mornings up and out the door to school, the lunches made, homework hours helping her, the dinners, the projects the proofreading and editing...  all of that is becoming a memory as the reality of it all coming to an end is finally starting to set in.  Did she cry; of course, she is the most emotionally driven in the family.  But my eyes burned too, she gets all that emotional drive from somewhere after all.

Watching her play, and play well for probably the last time in that High School uniform and definitely in that gym, brought all the emotion out.  It took a lot to get her on that floor.  It took more strength and courage from her to step out there again.  She really shined tonight and for that I am grateful, and I know that somehow, some way, we were Blessed with a great night.

A tired momma signing off.  Thanks for stopping by all!  31 For 21 Blog Challenge. Celebrating one
amazing girl that our little guy absolutely adores!  Oh and somehow, Bradley slept through it, but the girls won their last game at home, so that was some nice icing on the cake after all!

Back to Behavioral Therapy

I just printed out a 24 page intake form that I have to wade through in order to sign Bradley up for Behavioral therapy.  We are hoping for some in school sessions where the therapists come into his school and help him with their work with him.  It’s frustrating really; for the most part, he does well at home with us.  Sometimes he acts up and is crazy, sometimes he just acts out for reasons we really can’t seem to figure out.  Out of nowhere, he’ll just want to pull hair, or scratch, or even smack.  He’ll be frustrated and then he’ll cry and be sorry - it’s just a matter of waiting out the mess before he gets calmed down again.  These events usually happen around times when he is starting up at school again.  He will copy all the negative behaviors that he sees, no matter how small.  And then he’ll take what he learns and make it bigger.  When he isn’t feeling well, he acts out too.  Turns out he tends to act out a lot, and he doesn’t feel great a lot of the time.  It sucks.

So far at school, he has tried to bite staff, and then he actually did bite one of them.  To be fair, they were training a new person and he was overwhelmed, and the actual bite - she came up behind him to vent him, he was not a fan and she felt she had startled him.  Either way, we spent two hours, every Thursday for a year learning behavior therapies to prevent the biting, the scratching, and the head hitting, so when it starts up again, I start looking to put him right back to work on his behavior issues. It makes my heart hurt as I realize that he has to start all over again.

So I have filled out most of the paperwork and once I finish it and turn it in, then Bradley will be evaluated and then we’ll be heading to a new series of Behavioral therapy at their center.  We’ll go about twenty minutes away from home for over ten hours a week, potentially as many as twenty...all to figure out how to unlock the part of Bradley’s behavior vault that sets him off in negative ways so that we can turn it around to positives.  And then, I can only hope that the behaviorist will also come to his school for sessions as well.  So that we can all get on the same page with his behaviors and make sure that we are not confusing the issues or confusing the routines for him.  They want to come to the house, but I said No.  Not right now.   Bradley will gain behaviors when they come into the home, and then we have to eradicate those AND the target problem areas, all while trying to keep him from choosing his favorite method of avoidance - closing his eyes and going to sleep, nearly every time.  I don’t blame him, I don’t like pushy people either.

I wish that what was best for him was not so completely going to take over my life.  But it is what it is I guess, what is best for him has to come first as the priority.  I can only hope that by loading up now, we’ll see better behavior from him at school, at home and out in the world.  That maybe, we can make him want to be more independent as he continues to learn what he is capable of doing on his own.  If there is the slightest potential that he may choose to be potty trained when it’s all said and down, then I am so definitely in, I can’t even explain the depth!  Would be worth a chunk of my life in the long run though.

First comes the ideas of compliance, control of his emotions, and following directions.  I don’t expect him to move out on his own when he’s an adult, I don’t truly expect he’ll get to go into a roommate situation with a caregiver sharing his home.   But I can hope that he will enjoy his life, being a part of his family, his community, and having friends of his own that he enjoys hanging out with.  I want him to be happy, healthy and able to navigate his life.  So off to Behavioral therapy we are preparing to go; and as always, time will tell.

Off to tackle a few more of the pages in that stupid intake book and then and call it a night.  Don’t tell anyone, but Bradley has actually slept through the night two nights in a row.  Truly the oddest feeling ever, to sleep through the night two nights in a row.  He does three in a row and I might throw a party.

Have a wonderful night folks.  Happy 31 For 21 Blog Challenge, it’s the 15th...goodness gracious, we’re almost halfway through Down syndrome Awareness month, what a wonderful month it has been!

Ending of a Season

It’s the last week of High School volleyball.  And as quick as it has gone; like a blink, it has been a lot too.  A lot of commitment and a lot of stress.  And not even about the playing.  Coach wanted to create a family dynamic; and though I like the idea, changing a mindset is hard work.  From a fractured team to a team as a whole is harder work than one can fix in one season.  It takes work and it take dedication - and desire.  And it starts with the player, but it has to go up the chain of command to the parents.

The parents have been tasked to put in a lot of work.  We have to put in hours at the snack shack and don’t see the games.  And then we were tasked with providing team dinners twice.  They try to get two families for each dinner, home and away...but this got to be rough too.  The first dinner we had to do, I put chicken and peppers in the Instant Pot and then made rice, then carried all that to the school where the girls and some of their friends met me to take the food in.  I was a nervous wreck.  All I knew was that my girls would love it; luckily it was a big hit for the team.  Even the boys team finished it off, they are tasked to ref the freshman/sophomore game so Varsity could eat together.  They moseyed in and out and ate in groups, but at least they were closer together when they did.  So that was a hit.

Our second time, we were supposed to have another home game, but a power outage moved venues and I was suddenly trying to figure out how and what to do for a dinner for the girls at the furthest away game in League, with Bradley in tow...talk about your bad luck.  So Eric took a half a day off work and he, Bradley, and I went to Costco.  We got sandwiches and cookies and a veggie tray.  With water, Gatorade and some candy as a treat we were ready to feed the team.  Too bad that the gym refused to offer a table inside for us to set them up.  Considering there are fires burning and the air quality was marked at hazardous because of the winds...really Sportsmanlike Agoura High.  So pathetic!   It I drive a van!  So with every seat flat, save Bradley’s, we set up buffet style and managed to feed a whole team!

Only a couple other families cooked like me, but most went with pizza and hot dogs...things that were easy and portable for these meals on the run.  All in all, I think it was a great idea...but it is stressful trying to feed a team of picky young girls...you want them to eat something almost healthy so they play well and no one points to you and your meal as the reason they lost.  Stressful indeed!  Haha...

The team itself lacks dedication and desire, for my girls that has been the hardest part of this whole season.  Girls that openly want to skip practice and say how they don’t want to play anymore... while sitting on the bench are so many girls that only want to have a chance to play, and just don’t get to.

For Sydney, this isn’t the end.  As a Sophomore, she has two more years to be here when this team gets it right.  And I think they will get it right, I just am not sure if it will be next year or the next.  Hard part?  Knowing that for Madison this is it.  This is it for High School ball...  maybe for College... we don’t know what the future holds for her, but she’s ready to grab it and ready to hide from it all at once.  Right now wrapping her brain around graduating High School and starting College is bigger than ball... so her priorities are well lined up.

There will be a last game of Volleyball, for each of them.  Madison’s last game of indoor High School ball is going to be Wednesday night.  It’s Senior night, so the Seniors will be honored, including mine.  Coach wants it to be a big deal.  We like that about him.  The season has been rough on the court, and off.  Politics will always be a part of school sports.  But like with all things there is always an attempt to find balance: the good and the bad, the darkness with the light.  As I tell my kids, always look for the light and hold on.  The darkness can be consuming, but keep praying until a sliver of light shines through, then hold tight to that.  You just never know when the next time will be the last time.  On the court?  With someone you love?  It all applies to the same thing - lessons you learn on the court translate to lessons you take into your life.  Love fully, forgive quickly, choose happy and choose to be engaged and excited by life.  Life is going to knock you down, only you decide if you want to pray while you’re down, but always, always stand back up.

Winning is a lot more fun than losing, but at the end of the day, learning only happens through your losses...only then do you learn who you really are and if that is a person whose eyes you can meet in the mirror or not.  I’ve tried to teach the girls to lose with dignity but win with grace...lately, there has been a lot more dignity than grace...but they’re taking the losses in stride and trying to learn how to maintain the dignity.  Hard lessons indeed.

31 For 21... loving someone with Down syndrome means that you accept that not every lesson is about him, or for him right now.  It’s accepting that there will be days of Blessings when his world is
right and his health is good and I can sit and be a part of the growing pains that involve just his sisters and the pain of a losing Volleyball season.  ;-).  And thank God for days like this for Bradley, for all of us.

Happy Monday All.  See you tomorrow!

Play Ball!!

We had a pretty busy year in our house.  The girls were busy playing a lot of volleyball; but not to be outdone, Bradley stayed busy too.  To be fair, a majority of his busy was going to visit his doctors and therapists; but when you are as popular as he is, it tries to feel like you are just visiting friends all the time.  Well, not really, but we like to try to convince Bradley of that anyway.

This year, Bradley got to play his first year of baseball.  We don’t have a Miracle League in our town as yet, but we have been hearing good things that one is coming.  A field has been donated and there is talk of the field being built soon.  But until then, we signed him up for the Challenger League.  What an adventure for sure!

We missed the first game because the girls had volleyball in Vegas.  We made it to the second game though.  The triumph of the second game was him taking part in the warm-up stretching and the warm-up tosses.  Plus he got his hat and his Uniform shirt.  He actually wore the hat and was pretty sure he never wanted to take the uniform shirt off...other than that, he was not interested in batting, fielding, holding his glove anymore, his hat... or pretty much being there anymore.  So not a huge success, but hey...he went out there.

The next time we held off on the warm-ups so we wouldn’t lose interest too soon.  Sydney and I took him because Dad and Madison were sick, and Sydney went into the field with him.  He stayed for a bit, got bored and sat down, got bored with that and wanted up - so Sydney; the trooper she is, helped him play baseball while he played koala bear.  He did bat, which was pretty stinking cool to see, which I did see as I watched the video playback.  My allergies were a little agitated while it was happening.

There were a total of five games, one we missed for prior commitments, one we missed because it was too windy and he was on the edge of sick so we didn’t even risk it with him.  One he wasn’t interested.  One he was involved and Dad was sick and then finally he was ready and dad was able to see the magic of Bradley batting and “playing” in the outfield.  He got bored and sat, but he didn’t require Sydney to play Koala baseball with him, so that was a win too.

The coaches were great, gentle minded individuals who see the beauty in providing something for their kids and other kids that regular little league isn’t inclined to offer.  They were encouraging, and they were willing to step back when a player wasn’t having it.  Nice!

As for Bradley, he saw so many of his school mates, some that were his buddies but not in his class anymore.  It is always so sweet, so cute to see how he is drawn to his buddies.  He isn’t one to interact so much as stand near his friends, just BE, be beside them, around them, a part of their world for a few minutes until time is called and we all go home again.

 

We were considering Soccer; but passed this year, Bradley’s still fragile respiratory wise when it comes to the winds and havoc it creates in his lungs...adding running to it...??? we opted to wait and look for basketball; which he loves, and baseball again.  The girls are again playing Volleyball this year, but like in High School season, they are playing on the same team, which means a lot more free time for all of us, while giving us all the Volleyball fun we enjoy so much with them.

Big plans for all the kids in 2020, on and off the courts!  For Eric and I, we only want healthy and happy kids.  That would be the best news and outcome for us.  😁❤️

Happy Sunday all, hope it was the best start to a great week for all of us.  High School ball wraps up this week unless our girls come up big and find a way into third place in their league...we’ll see.

Awareness and Acceptance of Down syndrome through 31 Blogs in 31 days for Trisomy 21.  31 For 21, Rocking an extra chromosome in October!

Giving Back.

In our life with Bradley, we have had our ups and downs - and not always due to medical stuff.  Bradley’s, Dad’s, even Sydney’s.  Those three have had their part in the medical drama that we call our life.  On top of that there has been the offshoots of living.  Sure it was because of Bradley’s medical needs, but when we moved to Ventura County, he was fragile enough medically that I drove to San Diego for six months, multiple times a week for his medical care.  Trying to get established in a new place with a medically fragile baby took some work; but we finally did, we had too.  The cost of the traveling was taking a toll on our ability to pay the bills and make ends stretch to form a bare touch.  Then the government went on Furlough, so Eric lost a days pay every week, a 20% cut in our single paycheck for our family.  Outside help kept us afloat...that and the girls loved the dollar Yakisoba from the Commissary, Hallelujah!

Charity was a new and strange thing for us.  Bradley’s formula needs were so particular we were looking at a formula that would cost us $820 a month if Tri-Care approved it.  We couldn’t understand why it wouldn’t be covered, until the doc that kept saying no explained that we would have a  twenty percent co-pay that would have us paying that $820 each month.  So we had to wait for other insurance means to pick up - that would be Medi-Cal, but it was in the distance...so far.

So we had to go and apply for WIC. We were able to get ten days worth of formula for Bradley, and they would get another week when it came in, and we could get that until Medi-Cal kicked in.  But they also gave us vouchers for milk and vegetables and fruits....we tried to  decline pointing out that though he was close to a year, he was nowhere near capable of eating or having any of those things.  But the clerk was so kind, she glanced at our paperwork and told us to take the vouchers, Bradley’s sisters would eat the food.  So that helped.  We had a non-profit group of doctors and lawyers donate a full two months worth of his formula for him, thanks to his Regional Center Rep reaching out to them.  And oddly enough, we were given a month’s worth from the ENT that took care of the girls...a different one than Bradley’s.

These are just a few examples of how we have been cared for along our way.  Even in the midst of the toughest times; when the strings didn’t tie, we tightened our belts a bit and went without a little more to make sure the kids never did.  And always they ate, there was a roof over their heads and we kept them safe.

And then Bradley turned three and his Regional Center Rep gave me a phone number and told me I was to call right away and leave my name and number.  That phone call started a journey that put me back into employment as the Care Provider for Bradley.  The state pays me to care for him so that they don’t have to provide him a nurse, or any special facilities to keep him safe and help him thrive. That’s always been my job, so it has been weird for someone to pay me to do it; but the truth is, working outside the home with his needs is not possible.  So there it is, my son is my boss.  And some times he is the BEST boss, and some days...boy oh boy...he likes to push me as far as possible.  Course, I can put my boss in a timeout, who else can do that?

In the end, my working helped us alleviate the pressure.  We saved, we paid off bills, and eventually bought a house.  Time’s got better, and for that I am grateful.  Because of how hard it was, we truly appreciate how much better it is, breathing is easier.  And because of how hard it was, we try to give back as much as possible.

When we have an overflow of Pediasure because Bradley needs something different when he is sick: we donate it to his GI, who can make sure needy families have enough for their babies.  Things like that we pass on what we can when there is a need.  During the fires, we try to provide assistance with items that are not glamorous, but are necessities.  And every opportunity that comes our way to be of service in the community, we try to take part.

It’s been more of a priority lately because the High School wants their student athletes to be active Community service members.  So my girls have helped with a New England BBQ for the Scottish Rites over summer; and a couple weeks ago, they volunteered at the Heart walk.  Madison even donned the heart mascot costume and managed to make so many laugh and smile.  The girls came home from both events smiling, and full of light.  This morning, the three of us went to Ventura Harbor (so beautiful) and helped with the Strides For Breast Cancer event.  We had planned to stay the day, but had to leave to get the back for them to run to a last minute practice for volleyball.  They play Monday and Wednesday and then their season is over, just like that.  Where did the time go?

But despite the shortened day, they had so much fun.  Met so many people, helped set the event up and then walked through the crowd, stopping to offer to get group shots of people, then helping to keep the fruit and water table stocked as folks were getting ready to walk.  When we left, Sydney told their coach they were coming but would be late, and then told me that she read a text from a teammate that she wouldn’t be there because she had just woke up...to which Sydney said: “We’re going to be there a little late, but at least we were doing something that is good for our souls.”

And my heart smiled.  I tell them every time we go do something to volunteer that it’s good for their souls and that always makes it worth it.  Imagine my joy hearing her repeat what I tell them, unprompted and from her own beliefs.  I feel like our rough start after Eric’s retirement from the Navy has brought us full circle.  We kept pushing and praying and never quitting, and now we can take the time from our better life and better days to be there for others, and it feels so rewarding.   Next week, we are going to help with the Relay for Life.  As my mom is now fighting cancer, for the fights both Eric and I had, this one means as much to us as the Heart walk.  And the girls are so excited to go, and I am so thrilled to be doing this with them, making these special memories that are strictly part of heart and soul, I will cherish this time with them for always....I hope they take these moments with them for always too, and never forget to complete the circle and give someone a hand when they can, knowing that someday someone may reach out to help them up.  It’s so good for the soul!

It was never promised it would be easy, but it was promised that it would be worth it.  And indeed, it is.  Happy Saturday Friends!  Another day in the 31 For 21 Blog Challenge.  Accepting that when Bradley came to us, he brought so much love.  Blessings on you all!