Trying to Learn

 October 7, 2020

So we’ve seen some return in behaviors from Bradley that we had eased over the last few months. He has been more compliant with demands made on him, like let’s go change your pants and do your meds...let’s go get a bath, let’s go eat.  Don’t ever confuse compliance with lack of an opinion though.  He is quite vocal about the fact that he doesn’t want to do any or all of those things above, but he would still get up and do it for us.  He still will, but the defiance and complaint is a little elevated right now.  Why?  

Well, for one, the Zooms have started again.  Not only is he forced to do school over Zoom, he has a new teacher and NO BUS.  Honestly; for Bradley, school is a ridiculous concept if there is no bus.  Talk about creating a monster.  No bus, so in his opinion, why are we doing that class thing anyway?  And about once a month or so; this isolation gets too much, so tonight he grabbed his backpack, loaded it with a single domino, his milk, his juice, asked to wear socks and was ready to head out for the bus.  Redirection took some work.  And frustration was pretty high. But we worked through it, because we totally get how sad he is about how things are right now.  

His actual Zoom time has lessened as we have kept him in his therapies, so his hardest day is Tuesday.  They want three sessions, we do what he’ll do.  And he protests and fights, but they are getting better at offering more music and books and videos - less about the branches of the government...so Bradley is a bit more willing to at least stay awake - well sometimes.  If his teacher talks too long, he just tunes her out and chooses to nap.  Kind of an MO for him.  

Lots of talking.... 

Why does she keep talking Mom?

                                                                        Whatever, I give up. 

If he doesn’t nap and they can’t grab his attention with a video or game, he will protest loudly.  And we are quite certain that all are grateful that we have an ability to mute him.  We try to prevent the fist to the head as much as we can, but there is just an acceptance that he is not a fan of Zoom. 

So school can cause behaviors, but usually only during school.  But the rest of the day, we are also seeing more behaviors because he is showing that he can start using his words and we are pushing him to move from one word to a sentence of a group of words.  Now to be fair, my son beams every time he puts a few words together to create a sentence that we understand.  He gets so very proud of himself, his smile is so bright he could power a mid-size town.  And then when he gets what he asked for he is completely reinforced to try again.  

We are getting behaviors now because he doesn’t always get what he wants.  I think I mentioned that he has asked for a popsicle at 8 in the morning.  Yeah, well, even mom has her limits.  So I made him waffles and he ate one of them and then he got a popsicle.  Why on earth right?  Well, the idea is to make him see he has to eat his meal first and then get his treat.  Not ideal after breakfast, but the span of is memory and the scope of his understanding is as yet still short.  I can’t tell him no you have to wait until after lunch and then you can have one, we aren’t certain that he will understand that after his lunch in four hours he will get a popsicle. Someday, but not today. 

Instead, we pay attention to now and we battle the little fights with a little bit of shorter spanned If/Then - which is a whole other visual card that we have to use in our house. You know it’s going to go well when he taps the first “If” picture and then taps the seconds “then” picture and then goes directly to his “first” activity.  On an amazing day, he doesn’t complain about it.  He just understands and moves along.  On a typical day, he complains about it, but will eventually do it.  We might have to grab his token chart and work him through it, but it happens and is relatively successful.  

Right now, there are times the token board isn’t quickly successful until we work through some frustration, a weighted blanket for a few minutes, some compression squeezes and working through it slowly but surely.  Once we can get him into the mode of compliance then we have to work.  We can keep it so simple that he repeats his numbers, the alphabet, repeating some simple gestures...whatever we can get him to do where he is not crying and fighting, when he is calm and complies he gets a token.  Sometimes behavior therapy looks that simple, but has the greatest reach.  And then when he is calmer and is ready to work for something he really wants, then the sentences come out and increase.  He starts looking at pictures, and maybe he sees a duck, and he says duck...but instead of just saying duck...he’ll say “Yellow Duck” and then the next picture is of cats, but instead of just saying “cats” he’ll say “three cats” purposefully adding detail he isn’t required to add, but the kind of detail that creates excitement and enthusiasm that encourages him to do it again and again.  That same response for times when he says “I want green cars please.” Or “I want blue tiles please” and a myriad of other sentences that he is stringing together with help, but also completely on his own because he is learning that he is going to get excitement and tokens that lead him to the treats he wants.  We’re working hard with him and we’re working hard to make sure that Bradley feels like he is playing as much as possible because he is just a little boy.  

Tools, all these tools in our tool box to help Bradley navigate his life.  We want there to be more joy than frustration, more happiness than anger, and more safety and less harm to him or others.  So we are learning how to fit these procedures into our life.  Simple, yes.  But make no mistake, simple does not mean easy.  And they are so straight forward you would think they would be, but it is difficult to maintain the same methods with perfect consistency.  So we are trying to have optimum consistency, accepting that perfection is not feasible, nor is it necessary.  

There’s always something more to learn and something more to teach and each day just provides a new canvas for us to try to help Bradley create the masterpiece that is him.  

Sleep Study

 October 6, 2020

On July 29th, Bradley, Eric and I traveled to CHLA for a Sleep Study for Bradley.  Being as things are like they are, Eric had to drop us off at the hospital and then he headed back home.  Seems excessive right?  Actually, there was a master plan to all of it, I promise! On the 30th, Bradley had an Eye Appt at UCLA, the two hospitals are literally 8 miles apart...thirty minutes with traffic, but whatever.  Eric couldn’t stay at CHLA with us, so he went home and slept and then came to get us and be with us at UCLA, because he could be with us there.  Hmmm....  

So the Sleep Study! 

OY!!!  

Actually, Bradley was pretty awesome.  The fact that check in was over a half hour past his usual bedtime, left him a bit less rambunctious than his typical.  Or perhaps, his young mind has finally helped him to accumulate some memories and typically the hospital provides traumatic ones; no matter how hard we all try, so he just remembers and is more sedate there.  But, either way, he was less rambunctious and walked with me without any trouble.  Considering I looked quite similar to those pack mules you see walking down into the Grand Canyon, or even in the Old West movies and games...it was a Blessing that he was such a Super Boy and walked beside me.  I had his Backpack, his food bag, his pillow, his weighted blanket (that gets a pound heavier with every tenth step I want you to know), his weighted stuffed dog that he actually named “Buzz”, and tucked away the secret weapon, his IPad.  Oh and in case you were wondering, Buzz the wonder dog gets heavier after every fifth step.  There’s a science to this and I figured it all out during my wait to get picked up for the Sleep lab and during the extraordinarily long walk to the sleep lab.  

So somewhere around Nine we make it to his room and they provided his plush bed and Mom’s pull out chair bed.  We work on jammies and meds and then the tech comes in to start the painstaking process of attaching about a thousand electrodes to Bradley’s head and body.  And by a thousand I think that I’m pretty close.  He had them on his head, on his chest, under his chin, both legs and I think his arm.  He had straps and monitors that were tracking other monitors because apparently they’ve done this before and know that back ups need back ups as kiddos; Bradley included, like to wriggle out of these monitors and devices.  

And if you weren’t aware, my son is quite certain that when someone touches his head they are quite literally stealing his soul, and he is quite attached to his soul.  For my part, I warned the tech of his issues, and for his Octopus arms.  He said he would do what he could until Bradley went to sleep and do more after if necessary.  Got it. 

So I gave him his movie and he decided he wanted the blanket I brought for myself and shoved the weighted blanket and Buzz, onto my bed.  Mom takes a big sigh... And gives him the secret weapon and he starts watching “Sofia the First”.  Odd.  Why?  He hasn’t watched her in over six months, but he immediately wanted her, maybe he really does connect little Sofia to his sisters.  I’ve always joked and suggested...now I feel I might have a little more science behind me.  

So the tech starts working, and Bradley starts this low wailing.  I call it keening...just a constant and steady cry that was not screaming or ear piercing, but constant.  The electrodes all went on...head, chin, legs, chest, everywhere... and Bradley just kept this constant wail and a bowed head.  As soon as the tech finished, Bradley stopped crying and within three minutes, he was actually asleep.  Ten minutes, they had a reverse cannula around his ears and across his nose to keep track of his breath.  Oh yeah, they kept a camera on him the whole time too.  

We got through the night, ups and downs and only knocked that cannula out once...impressive.  The next morning, I took my little guy with the odd gel in his hair (interesting spikes I might add) down to eat some breakfast while we waited for Dad to arrive and taxi us to UCLA.  Parked in the shade, Bradley and I took small catnaps on the pallet I put on the floor of the van, and we even had a small picnic with our Chick-Fil-A lunch.  Bradley might have left there with yet another admirer in the sweet girl that worked at Chick-Fil-A, but that really surprises no one.  :-) 

We would see the eye doctor and head home after.  

It would be today long to get results from the sleep study.  Bradley and I took off at a very early hour this morning to head back to CHLA.  Bradley would get his weight and height, (60.8pounds - kind of disappointing as that is down and 50.5 inches tall) and then would let the nurse put a pulse ox meter on his finger.  What surprised me the most was when he held out his left arm for her to do his blood pressure.  She put it on and he wasn’t excited about it anymore, but I told him to “Freeze” and he left his arm on his leg and we got I think our third ever BP reading while he was awake.  Exciting!  

So what do we know?  Bradley has moderate sleep apnea.  While we wait to consult with his ENT in November, we will be introducing a CPAP machine that may not get more than de-sensitizing work for the next few months; but theoretically, if his apnea worsened from moderate to severe, he might be better able to tolerate and use the machine.  He could surprise me and be willing and able to use it soon, because lately there is nothing better than surprising mom; OR, he could put the machine in the same category as his hair and we’ll still be doing some soul searching to convince him we are not soul stealing!  I guess we’ll find out soon enough.  

For the most part, a very good day at the hospital.  His realization that he indeed was pretty amazing at the hospital has led him to consider the need to bow to the demands of therapy this afternoon a bit below him and definitely something worth fighting about...but hey - tokens are a life saver when it really comes down to it.  😁😂

Long day and still sitting in the middle of it, so I will close this out and get on to that ever full pile of laundry that haunts me!  Have a wonderful day all!  

Zooms, Oh Me oh My!

 October 5, 2020

Sometimes it’s hard to feel like the Zoom sessions with Bradley did anything good.  Mostly, I felt like I was just torturing my son.  I would try to prevent these damaging behaviors that would often lead to him hitting himself in the head with his own fist, hitting his head on the table or his chair,  or trying to hit me with his fist, or hitting me with his cups or whatever he could find.  When you want to talk about being pushed to the edge, these are the kinds of situations that make you leave the room to gain some semblance of control and the ability to react without responding.  You see I also have been reading and rereading a book about Behaviors in Children and Adults with Down Syndrome.   Respond but don’t react.  Easier said than done when you’re kid has hit you so hard with a fist or object that you aren’t sure if you are bleeding or not.  Or if that shadow under your eye is going to turn much more prominent and make people wonder.  Yeah, for forced isolation.  

And the thing is, all of us parents from his school class were busy texting and talking with each other, and I know that this is not happening with just my son.  All of us were experiencing these upticks in behaviors, and while most removed their kids from all Zooms, all pretense of school, and had no therapies; in our house, we were pushing forward as if the mere acceptance of stepping out was an impossibility.  This quiet suggestion that Bradley should be on his IPad all day to limp through this strange existence like in most of the other  houses that I knew of with a child with special needs; and yet, the sense of failure that I had hanging over me at that option, was somehow more than I could bear.  He could only learn for so long, so he was already on it more than ever.  My brain was constantly ticking through the options as I tried to implement ways to make him successful at home, with phone calls and emails in order to try to find a way to make him successful with his other therapies.  And I was tired.  A full house means more attempts at making meals and more often, what will Bradley eat today and if he won’t is he getting the right amount of Pediasure to make up for it.  How can I increase what he will eat and how can I keep his calories in the right place.  Spending more money online to bring in the kind of tools that he would see in feeding therapies, and behavior therapies, and getting better at the computer and the laminating machine.  But also trying to help all the kids hold it together - especially the oldest...trying to keep the additional stressors from being crippling to them, to Eric, and to me.  Using every tool in my toolbox to help them move through this quarantine with ability if not with ease.  I reached back into my memories of trying to cope with Bradley being so sick, with his immunities being so weak that our lives had to be so small, so contained, and I tried to remind the girls of those times and how we got through them then, and how that is how we would be able to get through this now.  There was laughter and tears, there was anger and bitterness, and there was pain.  The physical and the mental - the emotional kind.  

And through it all, I knew that this was hard for them, but that this was the hardest on Bradley.  Our boy who had been so isolated for so long, was getting out into the sun.  He was riding the bus to school for goodness sake.  He was making friends with classmates, he was going two places for therapy - and going often.  And he was making friends in those places too.  Other kiddos that he was learning how to approach and ask “Come play, please.”  And then it was gone.  

So what did we do?  What else could we do?  The best we could do everyday, and each night I would push aside the dread of the upcoming day.  A mind numbing dread that settled over me like a cloud that I had to force myself to not give in to, and I pushed myself to ignore.  I settled into work, hours and hours in between school and therapies for Bradley, I would fill my time with either work to find some way to make the next session easier, more beneficial...or my work.  Anything to keep the dread at bay and the hope still burning.  

At the end of the day, we found that there were some tools that were beginning to work. We implemented full time use of a Token chart.  Every time we sat down for school, or therapies there was a token chart with ten little Velcro pictures to put on as we made our way through the session.  We used a visual schedule for his Occupational and Speech therapy, where he could check a box after each activity and knew what was coming next.  And though he hated coloring, when we used a timer, Bradley would agree to practice coloring.  I kept a large sized box for behavior therapy, and four days a week for two hours, we would work through my box.  Puzzles, play-doh (did you know that Play-doh when shaped like a ball really flies like a ball?), coloring pages, Therapy putty, bubbles, matching games, word builders, marble runs, and math builders.  There is more in there, but that’s the basics of how I figured out how to get him through his therapy times.  

Where are we now?  He’s finding his voice.  Where before this he would never sit with me to work, now he will, and he doesn’t always complain about it.  Weekends provide the down time, and now he is more willing to get up and dance, to try to build his car tracks, to build blocks with us, to do his math boards or build words.  Though he doesn’t choose them, when he realizes he is bored on the weekend, I can offer the word building and the math boards and he’ll do both with me.  Somewhere in there, he’ll ask to dance too. And some days he needs and wants to sit in the hammock and swing, but this one tends to be on a day when he is feeling super stressed because that tends to put him to sleep.  And then when it seems that he has quieted his brain, he’ll ask to return to his movie again.  

Did anything we attempted to do during those very long Zooms, and those extremely long and stressful days actually do any good?  Maybe, he understands his Token Board and how to get what he wants by doing his work.  He can now blow bubbles, which he couldn’t do before.  He is using his voice, but he’s been back in in-person therapy since the end of June, so that might be all from then.  Mostly, he is thrilled to have someone in person to work with him and that seems to be the true catalyst to the sudden explosion in his use of spontaneous words and definite interest in repeating language.  

His behaviors are so much better, he is a happier kid.  He is able to communicate more of his needs, and we have learned to help him work through his behaviors so that we can all get to a better place, a better chance to provide what he needs or make him understand why he can’t and when he can get what he wants.  But that is a whole other blog for another day.  :-)  

`The Journey Starts with Me.

October 4, 2020

There is a time in your life you have to step outside of your comfort zone and be more than you thought you could actually be.  When you are a pretty shy person and you have children, you suddenly have to try to pretend that you aren’t shy and teach them to start things and do things that you wouldn’t ever see yourself doing.  I had to pretend that life didn’t scare me near as much as it does.  I had to pretend that I didn’t spend most of my day trying to find an adult that would be willing to do the adulting that I really am not qualified to do.  

Despite my efforts to the contrary; somehow, I became the adult and I have to figure out the way forward for myself and my kids. I was just beginning to find my way as a mom when my girls were little.  I wasn’t super great at being a mom, but I tried everyday and I was Blessed to be home with them.  But even as I held their little hands and watched them grow my heart hurt because I knew that I was the memory holder.  I was the one that was going to remember these sweet girls as littles and I just couldn’t fathom how they were going to grow up and not remember these times.  And it would weigh on me, so I would try harder to be absolutely present in every possible moment with them.  I sat in the theater and watched them dance and grow as they learned to be a part of a group and how to be a part of a class and synchronized in a group.  

I volunteered in the classroom, and when it fit in my work schedule, I took them with me.  I would play my IPod and they would sing along to Daughtry, the 80’s, and George Strait.  Their little voices singing off key, the words nowhere near correct, but so beautiful to my ears.  They would sit in my lessons and watch their little movie player with head phones and color, so quiet and so good.  They made friends with all my students and all my students’ kids; and even today, my kids remember those kind faces and think of their childhood with smiles and joy.  They loved their time with me then, and I think that they might have many memories from that time.  But we talk about that time and I share the memories with me to keep them fresh for them.  I am the memory keeper, I have to keep giving them the memories that they have forgotten so that they can keep those pieces, it’s important.  

And then I had Bradley and I had to completely rethink my life and my ability to be a mom.  And not just a mom, but a present mom, a mom learning completely new things, a mom learning how to fight for my kids, and a mom that is successful at building three masterpieces out of my three children.  

So I learned to pray a little harder and work harder to find my Faith and put it into motion.  I told myself that I would keep stepping outside of my comfort zone so that I could become so much more as a person, as a wife and most definitely as their mom.  

I know that my children are going to change their world. But I am learning that to help them do this, I am pulling myself out of what I know and choosing to try and become a better version of myself.  I am working harder on me.  I am working on my health, and in the process I am working on the family so that I can bring (even drag) them with me into better health.  But I am also working on our Faith, our Hope and the Promise that belief is the basis for starting every single Miracle that is going to Bless their lives and every single Miracle that they are going to Bless others with.  

Changing the world takes time, effort, and Faith.  I’m too stubborn to quit and in the end: “Your Whys have Eyes” and the eyes watching me are the Miracles that God gave me and I will not allow them to see me Fail.  My love for them is the very air I breathe and the light in my world!  I may not be here to see the Cathedral finished, but I will see the Foundation laid strong and solid and I have Faith that the lives they build will be worth every single effort.  

 

War of the Rash

 October 3, 2020

If you were to look up Roseola, you would see that it is a nasty rash that covers the body and is common amongst the youngest littles in our lives.  Usually.  But then there is Bradley.

He went to school one morning, tired as usual...common for him.  Bradley is allergic to sleep and avoids it all costs.  As such, he was getting a hefty dose of Attarax every night to help him go and stay asleep.  On top of that he gets another small dose of a drug that helps as well.  Together...they were just helping him get a few hours of sleep each night and then trying to help him not be so wide awake when he did wake up that we wold be spending hours with him waiting for him to fall back to sleep only to wake him up for school.  It is a vicious cycle!  

Anyway, while he was at school, he requested a nap on his IPad.  And they always let him.  First, if Bradley wants to sleep - you will not keep him awake and the ensuing fight can get ugly.  And two, face it, one less kiddo to work with at a time.  So he took a nap and when he woke up he had a temperature in the 100’s.  So mom was called and I brought him home.  At home, I changed him out, noted one tiny spot on his stomach and then Bradley ended up napping again for a good hour.  When he got up from that, I noticed a couple more spots, about as many as I could hold in two hands.  

The doctor’s office was full so I set him up to be seen the next day and just kept him cooled off with Tylenol and Motrin alternating.  By the next morning, his torso and his back were covered in angry red spots and the arms and legs were starting to be covered.  That was nothing to what was to come.  Bradley’s Doctor told us he had Roseola and we started these four hour medicine cycles to try to help him get through the next week.  

We thought that we would be able to give Benadryl during the day and Attarax at night and that should make him kind of sleepy all the time and a little less miserable throughout the whole ordeal.  Wrong.  

Turns out, Benadryl really doesn’t make him sleepy.  The anticipated three day fever lasted a week.  And Attarax which is given to people for allergy itching...wasn’t enough to get him through the night.  So we just had to nurse him through the days on Benadryl, give him all his usual meds with the addition of Benadryl at night, keep the anti-fever meds on board at even intervals and lay beside him through the night to keep him from scratching himself raw and bloody.  

It was quite a long week for all of us.  And in terms of exhaustion levels...quite the extended recovery attempt.  We would barely get Bradley back to school before the Fall Break and Thanksgiving.  Ours was a quiet Family affair, and my usual hustle and bustle to prep was quite a bit smaller than it would normally be.  But, when we sat at the Thanksgiving table, Bradley was healthy enough to sit beside me and eat like a big boy.  No high chair or improvised booster seat.  Just a little boy, in a chair at a table eating dinner between his mom and dad.  When you consider the true meaning of Thanksgiving, I guess we might have an advantage there.  We are always quietly thankful for each day, a gentle reminder of what could have been but isn’t every time we take care of his button site and the certainty that it could have been worse.  Even with the rash from Hell...it could have been worse.  Bradley managed to fight off what we were told was Roseola, what we acknowledge now could have been something else.  But his little body and his impaired immune system was strong enough to push through and then push out whatever it was that was attacking him, and we didn’t need a hospital stay to get through it.  That alone is quite an achievement in and of itself.  

He doesn’t take Attarax anymore.  We have actually moved on to a new med that helps with sleep, but it’s true assistance is probably in the gentle mood enhancing and impulse/anxiety suppressing that comes with it.  An anti-seizure medication that failed that job in patients but helped with sleep, anxiety and impulse control.  Given our current state of Isolation during this Pandemic, it was a timely and beneficial change.  Too bad he doesn’t sleep any better than before...but Attarax was creating anxiety in him, so he is much better off.  

We aren’t completely sure he had Roseola, we aren’t completely sure he didn’t.  We know it was something like Roseola with a lot of characteristics that weren’t Roseola like.  So as usual, we maintained that life with Bradley is all about mystery and trying to fit the pieces of a complicated puzzle together.  But that is what we expect with him and how we approach everything with him.  How do we puzzle out this new piece of Bradley’s world?  

But that’s the Challenge of Bradley after all, and every day is a new day with a new set of challenges.  Wouldn’t want life to get boring after all.  :-). 

The Tale of Two (Three or Four) Therapies

 October 2, 2020

So I think that I may have mentioned that my kiddo has the ability to see a million good behaviors and will choose to copy the ONE bad behavior he sees.  Last year, he definitely struggled when he started school, he had other kiddos in his class that had severe behavior issues and that of course was an open door for Bradley to copy and bring those behaviors home.  My son; who had stopped biting, started again.  The same with hitting, pinching and hair pulling.  His first attempt at biting had me calling a conference with his teacher - which somehow ended up complete with teacher and therapists around a table with a behavior therapist telling us she wasn’t worried.  Fast forward another couple weeks and he struck out at another student and while sitting on the floor, a peer surprised him and he reacted by trying to bite an ankle.  So as his mom, I am was both horrified that he tried to bite someone’s ankle, but being the me that is me - I was also horribly struck with the giggles of the image of my son’s face on a small chihuahua trying to gnaw on random people’s ankles.  

Regardless of how much therapy I probably need for my sense of humor issues, I accepted that it was up to me as the adult and a parent to try to find the answer for my son’s behavior and attempt to make him safer at school by sending him with better behavior.  Our last attempt at behavior therapy was a horrible experience and a horrible mistake; so I was not overly excited to get started again and had been dragging my feet until that second biting attempt.  At that point I picked up my feet, swallowed my discomfort and got the wheels in motion to start Behavior Therapy.  

They told me my son was the equivalent of a three year old - and I am not going to lie to you here, there is nothing worse to hear than having that conversation with someone when they are pointing out all the failures your child has and all of the areas he falls short in...and telling you that on paper he wouldn’t survive at nine years old in a Kindergarten classroom’s academics.  I left that meeting and drove numbly to pick up my little boy and take him to his Speech and Feeding Therapy.  His therapist and I always had some check in time with each other after and we discussed Bradley’s results at ABA (Applied Behavior Analysis).  I walked in numb, but I walked out warm and hopeful. 

You see, I forgot how much the group of therapists that help him with his Speech, Feeding and Occupational Therapy absolutely and completely love my son.  While we spoke, I could see the shifting of emotion from the frustration that I felt and they shared, to the determination that what some test had deemed his areas of failure would not remain areas of failures for my son because they weren’t going to allow that.

Not many weeks later, I would have a phone conversation with Bradley’s principal.  Eric and I felt that It would be beneficial to have part of his therapy hours at school to help Bradley learn to transition and mitigate some of the behavior problems that we kept being told about.  Bradley’s teacher was all for it, but then she was always open to what would help Bradley and would help her in the classroom.  I would learn in one three minute conversation that Bradley’s principal wasn’t interested in what was best for Bradley, telling me No before we ever discussed the issues and what needs to change for Bradley.  So he told me, “No, we can’t do that.”  To which I said, “Well, when you present me with the problem and I put all the pieces in place to help my son and make him successful at school it is ridiculous to me that you would refuse to even consider what is best for my son and would help Bradley navigate his day at school successfully.”  There was silence in the pause and then he told me he needed to speak to Bradley’s teacher to which I said, “You do that.  You know how to reach me.”  

My next action was to speak to all his therapists to devise a plan.  Within weeks I would be sitting with the owner of the Therapy Center, and we would be devising a plan to help me get what Bradley needed at school.  She would contact a Behaviorist and Advocate that she paid to come to our house and go over some Behavior parts for home, a plan for the way to implement positive reinforcement at school, and her plan to be a part of our next IEP so that we could get Bradley a One on one aide at last.    

I was taking Bradley to Behavior therapy four days a week.  Because Bradley likes to avoid work by closing his eyes and taking a nap, we went to the center for work to try to build a rapport with a therapist before we tried the in home therapy.  Meanwhile, I tried to keep him healthy enough to go and for each time he was sick (the little guy had pneumonia at one point) I was always reminded of their practice’s policy for missing appointments etc., etc.  I finally looked at the lady that came out every time to tell me that if she brought her form out to me one more time I wouldn’t bring Bradley back at all.  I reminded her that as an adult with a College degree I actually do know how to read and I can comprehend the paperwork I signed and that I would not be changing the means by which I take care of my son and want I have to do for him.

After that, things seemed to calm down at therapy and they started working with me.  Listening to me as I explained what Bradley needed to navigate his day successfully, and finally getting them on board with what I need to do to get the school in line too.  Our relationship changed completely, and perhaps not unexpected, they too became quite enamored with my son and whenever that bond starts to grow, things begin to blossom in Bradley’s world.  

But then COVID hit and the world of Zoom reared its ugly head.  All the strides forward fell off and the behaviors really started to exacerbate.  Turns out my guy is not a fan of Zoom.  Stunning I know.  And me taking hits to the head with his milk cup leaves me less of a fan as well.  Suddenly we were juggling, four days of Behavior therapy for two hours each over Zoom, three days a week of Zoom OT and then Speech, and three days a week for his classroom and one for school speech.  A house full of people and where every day should have felt like a weekend, it was not to be.  Our weekends were imperative for a chance to sit back and breath, to not put any demands on Bradley for just a bit and give us all a chance to relieve some of the stress.  

I’m happy to say that Bradley returned to in person therapies at the Center for Speech, OT, and Feeding therapies in June.  And about the same time, we started in home Behavior therapy two and a half hours a day, four days a week.  You guys, Bradley is doing amazing right now.  We didn’t change any of his therapy when school started, so he only does one Zoom with class one day a week and we compromise that on his non-therapy days we attempt two, but it’s usually one.  They wanted twelve zooms a week, we offer four and those I have to bribe him to sit through.  The way his world his blooming right now, I think we are doing the right thing. Don’t get me wrong, I appreciate the efforts to provide some sort of education...but the reality is that for my kid, digital delivery will never be an answer for him.  

These are trying times and it is only getting more difficult with each passing day.  Stay healthy and stay safe, about the only things we can hope for each day!  

 

Day One of Down Syndrome Awareness Month 2020!

 October 1, 2020

I think that the year has been crazy enough without my adding to it by doing something different than what I would normally do in October.  So here I am, ready to start a month of talking with you and to bring awareness about Down syndrome while letting you into the rooms in our house.  Mind you, most of the year seems to have happened on Zoom, and if you have followed anything about Bradley in the last few months, well - I am thinking even if you haven’t, you might have a pretty good idea of how FUN that has been for all of us.  Hint: Bradley is not a fan. 

Anyway, let’s move on.  For now I’ll take you back to better days.  Last year, my oldest was a Senior in High School, my Middle was a Sophomore and Bradley was a Fourth grade student.  What we thought were the BEST of times, turned out to truly be the BEST of times.  The girls played Varsity Volleyball together and we even have some visual proof of them on the court together - but most of the time Madison played front row and Sydney roamed the back and they subbed for each other.  Either way, super proud parents.  

For his part, Bradley was starting to attempt life in a small crowd, armed with his IPad and a few of the games even sitting on the bleachers with me, not always in the quieter confines of his stroller.  Does he need a stroller?  Yeah, he does.  He gets pretty tired, but for the most part our world is small enough that he can traverse point A to point B without it.  Longer journeys, he needs a little mobil way station and the stroller provides that.  What else?  Oh, those quiet confines... Bradley likes to watch the world happen around him while he has headphones on and can take his time to choose the moments he wants to view the outside world, or interact with the outside world.  Things can be so incredibly overwhelming for him.  So we would provide the safety confines of his stroller.  He can kick back with his movie, his headphones in place and maybe ignore or shut out the rest of the world.  It can be ideal. 

So he watched some of his sisters playing volleyball and sometimes he preferred his movie, and sometimes the overwhelm was so much that he would close his eyes and sleep through it all.  And when we thought he just didn’t like it, two things happened...one and then the other.  First, the girls played on the same Club Team (again, talk about proud parents...both girls on the court together- a true gift!) and that meant our constant volleyball tournament schedule slid into about once a month.  Bradley wasn’t inclined to like this, how do we know this?  He would ask “Val-ball” in the mornings when he was getting changed and medicated.  Hmmm...  Maybe he was just used to the constant run?  

Then, there was no more volleyball.  No more School and dare I say it - no more Bus.  You can imagine what he asked for the most...  Bus.  Everyday, for awhile.  But because Dad has serious heart issues, the devastation of losing the Bus was not quite as devastating when your favorite person is home with you everyday.  Turns out, most things are made better by having Dad here.  :-). 

But then, we started to get him asking for “Val-ball” and it occurred to us that though he might not be watching all the time, he’s enjoying the outing, the family being together.  He loves the breaks between games where he and Mom tool all over the venues.  He enjoys the differences in foods as Mom is always seeking the kinds of things he can eat, and experimenting to see what he WILL eat.  It’s a day of few demands, and much high enjoyment on his part.  We have to get up early and sit in the car for long periods of time so to make that up to him  - “Yeah, you can have your movie as much as you want.”  

Even in that last tournament; before the world shut down, he had the stroller to retreat too.  What made us so happy was that when given the option, he chose to sit beside us on the bleachers for some of the games, and he looked up quite a bit.  Will he remember seeing them play?  No.  Will he remember that he had success sitting like a big boy next to his parents on the bleachers?  Probably not.  Will we have to start all over when the world opens and we return to life again?  More than likely.  But then that’s the dance card that we have filled, a slow two steps forward and one step back.  On the good days this is our status quo.  Rougher days there might be quite a few steps back, but as long as we keep moving, there is always potential for moving into something better than where we are at right now.  

And though this is how we have always lived our life with Bradley; it turns out, this is a survival skill that we never knew were going to need to get through life in general during 2020.  Like we’ve been in training his whole life for these past few months.  Did we have struggles?  Sure, but none like so many others.  We were able to reach out with support to try to help others and make connections to ease the isolation and loneliness that so many suffered through, or that is what we tried.  As Blessings go, we counted ours and knew our counting was incredibly long.  

It’s Down Syndrome Awareness Month Friends!  Another round of the Blog Challenge: 31 Days for Trisomy 21!  

#Perfectimperfections  #31For21 #BlogChallengeT21