Saying Good Night to October

Day 31:  Blogging for the 31 For 21 Challenge for Down Syndrome Awareness

So I started the day with the news that the UK is rolling out a new Prenatal Genetic Test what will prove 99% effective in determining whether the fetus has an abnormal chromosomal defect.  And when you realize this means that the mother could avoid the more invasive testing that leads to the potential miscarriage in 1% of the tests, that's the god part.  Any baby loss is too many losses.  So that would be great for potential parents.  But here’s where things get dicey.  You see, the implications are extremely damaging to our Down syndrome community, and potentially, could wipe out a whole generation of our children.  As it is stands, 90% of babies are aborted if they show any kind of chromosome abnormality; in fact, some healthcare providers encourage a patient that they are still young and could try again.  With that in mind, the press release regarding this new prenatal test uses the reasoning that the life of a person with Down syndrome is not worth the lifetime cost of his or her care.   By making this test a part of all early testing, any parent that chooses life must in essence be willing to take on the lifetime cost of their child to adult, because the government will be able to bow out of the care…they offered the test to rid you of the costly child after all.  Completely implausible?  Oh how I wish.  In 2012, an Oregon couple sued their hospital for $7 million to cover the cost of raising their child with Down syndrome because they were surprised by her diagnosis.  Sadly, they were awarded 2.9 million.  Lucky them, and oh how much love that little girl doesn’t get in that money grubbing household.  What a slippery slope we’re now falling down. 

If a court will allow for payouts for wrongful birth, then we are already in trouble.  That a test will provide 99% accuracy suggests that there will be even fewer births of extra chromosomes and fewer surprises.  Arguments are being made that taking the life of a child at birth when a surprise diagnosis  should be considered as well: 

For several years now, the Netherlands has permitted what is called “The Groningen Protocol.” The Protocol describes when medical professionals may actively kill newborns who meet certain criteria for medical futility and fragility. A child born with Down syndrome was one of those killed by the Groningen Protocol even before it was announced…In the United States, there is a federal law that is supposed to prohibit the actions of Gosnell and the Groningen Protocol from happening. It is called the Born Alive Infant Protection Act or BAIPA. http://www.downsyndromeprenataltesting.com/gosnell-after-birth-abortion-and-down-syndrome/

Yes, here in the States, babies with Down syndrome are provided some protection, not so in places like the Netherlands.  If the UK convinces parents that a child with Down syndrome is too much of a drain on the economy, there won’t be a need for this protocol because the child will never get a chance to be born. 

As if the medical aspects of Bradley’s care aren’t enough, there are times I experience real fear for my son, and real fear for his future.  And I admit that sometimes I wonder if there will be others like him or if he’ll just be the last one in a line of others with an extra chromosome.  And even as I fear, I feel such an innate sense of gratitude to the parents that came before me, the ones that had no chance of knowing about the diagnosis before the baby came, the ones that were told to leave the baby to die, but refused.  The ones that were told that the baby could go to a place and never been seen or heard from again, and refused.  The parents that viewed their child as lacking in what he or she could do, but refused to do anything but love them and accept them as their own.  I have a great amount of respect and gratitude to these parents. As they watched more and more types of genetic tests be produced they must have been worried about the eradication of Down syndrome from the world too; and yet, my son is still here.  One can only hope that a greater sense of mankind and the true sense that every person has a place and a reason to be here will prove enough to bring yet another generation of babies with Down syndrome into the world. 

I’m not even above bribing people to keep my son safe.  Every day, research is making connections between Alzheimer’s disease and understanding it thanks to the genetic make-up of the brain of someone with Down syndrome.  We are also learning a great deal about tumors vs. hard cancers; the difference is that our loved ones with Down syndrome aren’t creating hard tumors.  Our kids suffer with blood disorders and cancers like Leukemia on a higher percentage but with a higher survivability as well.  Perhaps before we go so far that we eradicate the syndrome, those in the world of medical research need to take a closer look and find a way to help us “Normal” chaps have a fighting chance. 

In the Down syndrome community, acceptance and awareness are preached constantly.  But while most are chasing the Inclusion dream so they can brag about little Billy or Susie being as normal as possible, we’re just over here trying to teach Bradley to get along with his life.  And I think for me, I get more worried about Eugenics and eradication.  I worry about his life being the last, and I worry about the Eugenics that was created by Hitler, ever coming to play again in my son’s lifetime, or my own.  As for Bradley?  He’s going to get there, one small little step or one mighty leap at a time.  His timeline is his own and he will follow the path he is supposed to travel and his dad and I are just going to keep up and support him along the way.  He’s going to get there, we know that for sure.  And as much as all this stuff can really get to me and way me down, even make me feel a little panicky as I research, I sometimes get a nice little counter balance from life to help me on my way. 

Today is Halloween, and we took the kids Trick or Treating.  Not one time tonight was anyone mean to him, or dismissive.  People were kind, people made the effort to talk to him, to be excited by his costume and how cute he was, to tell him that.  People handing out candy were patient, and gave him high fives, or knuckles.  Bradley said “Hi!” and waved to everybody he passed, and after they were behind him he turned and said “Bye!” and waved.  Every single one said Hi and Bye to him too, smiling at him; engaging with him, treating him like any other little guy running around out there.  When he got overwhelmed, and really tired, he retreated to his stroller.  He still waved and he still practiced his talking.  He pointed to scary costumes and said Hi, and he pointed to cute babies and said “Ahhh.”  Some of the Candy givers would give candy to his sister for him, or bring it to him themselves, and get knuckles in return.  And through it all, he signed “thank you.”  And he would smile, and sign “happy.”  So many happy signs!  So many thank you signs!  Him and me! 

We weren’t out all that long.  We weren’t really out for all the candy, we have a ton here at the house because only three kids came to our house other than our own three.  We went to create the memories, to walk the streets with our girls that are growing so fast and starting to say good-bye to the tradition of trick or treating for themselves and rolling onto being candy givers, or taking their brother out.  We went to be with our little guy and watch him to see how much he has grown and changed over the year since last Halloween.  We went to be a family.  We went to remind ourselves that our little fivesome is perfect in our numerous imperfections, and that we are doing just fine with all of it.  We have hormonal and sometimes crazy girls and we have a little guy that sometimes finds his frustration at being unable to speak a huge wall to climb, but through it all we have each other.  We have this life, this one life that we share together and we are making that life the one that counts. 

Bradley is a gift.  We didn’t know what he was bringing with him when he arrived, and through the anguish of letting go of what we expected we have come to embrace the miracle that he is, for all of us. 

Tonight is the last night of the 31 For 21 Challenge to Bring Awareness and Acceptance of Down Syndrome.  Tomorrow is the start of a new month and a new Awareness battle.  Our fight for Bradley never ends though, we’re always working toward his better tomorrow and you are always invited on the journey!   Happy Halloween!  Thank you for taking this journey with me this month, and throughout this little boy’s lifetime.  Your support for him, your support for the girls, our family, and your support for this crazy mom’s rambling posts never goes unappreciated.  Thank you all!  God Bless you on your journey, may your miracles be many, and your troubles be small! 

My Guest Blogger Tonight: Sydney

Day 30:  Blogging for the 31 For 21 Challenge for Down Syndrome Awareness

There are so many reasons and ways that I am proud of my kids.  Today I am definitely loving the spirit and heart of my middle kiddo.  Today, Sydney is my guest blogger.  Every year she chooses to create a blog entry to share how she feels about being a sister to Bradley, how much she loves him and how life is for her having a brother with an extra chromosome.  Every year, I wait for this entry and she never disappoints me in how well she writes, how much she sees, and the incredible amount of love that comes across in her work.  So please enjoy her blog post, I know I really did. 

Our Special Vanilla Oreo

I am a middle child of three. Madison is my older sister, and she is in her Freshman year of high school. I am Sydney; number two, middle kid, cream of the Oreo; that’s all me. Not only am I the middle kid, I am also in the middle grade (7th) of middle school; go figure. Now, number three, Bradley, was the surprise that finished the Oreo cookie. He was also born with something very special. It’s almost like instead of finishing our chocolate cookie, he came in vanilla. Which, of course, was different; but it was a good different.

Before Bradley was born, it was just mom, dad, Madison and me. A happy family of four, that we were. When we found out mom was due with our future sister or brother, son or daughter, of course we were ecstatic; even the shock wore off by that point. At age five even I anticipated the arrival of the stork as much as my parents did. When the due day came near, mom was rushed to the hospital, and the waiting game began. I remember staying with my aunt, spending school days boasting about my future sibling and the weekend visiting mom in the hospital. And finally, he entered our world, on January 9th, 2010. Aunt Sonya told us his name was Bradley.

Soon after the news came, my sister and I were pacing anxiously in front of mom’s door, occasionally raising to our tip-toes and trying to see through the small window. Looking back now, when the doctor finally admitted us into the room, I knew something was wrong immediately. Both mom and dad’s eyes were red, and based on their expressions the tears they had shed weren’t just those of joy.

I ignored this, however, and my eyes went straight to the little blue blanket wrapped around my new baby brother. As I write this, I remember the day mom and dad first showed Madison and I that blanket. We were in a food court with Aunt Sonya and Uncle Chris, and out of the blue dad pulled the blanket (see what I did there?) from a NEX plastic bag, displaying the child’s gender to us all. Madison was hysterical, clearly very excited.

Meanwhile I was throwing my own temper tantrum and crying my eyes out. I wanted a baby sister, and that blanket was not pink. Hilariously enough, once I calmed down and let mom convince me that another sister would have drove my crazy, I started brainstorming which stores would have the best toys and clothes for my little brother.

Anyways, I went straight to my new baby brother and let my mom help me hold him properly. I remember feeling very proud. I have a baby brother, and now I will be older than him and I can boss him around when he gets older, just like how Madison does to me, and we can all make evil plots against mom and dad, I thought. Even then, I was turning into the devil in me. Just kidding. It turned out, however, that bossing around and plotting evil things was “not nice and I should be nice.” Bummer.

Later on I learned what had mixed my parents tears of joy with sorrow. They told me that Bradley had Down syndrome. Because my youth put a limit to my attention span as well as my capacity for comprehension, the explanation of Down syndrome provided for me was just enough for me to understand that he was different. Nevertheless, I loved him all the same, not seeing whatever flawed my perfect brother. Over the years, I’ve grasped a better understanding of what Down syndrome is. Basically, you and I have twenty-three sets of chromosomes in our bodies, each with two chromosomes in them. Someone who has Down syndrome has a third chromosome in their twenty-first set. This makes development of the brain slower, and takes some muscles longer to grow. Someone with the syndrome tends to have a flat nose with almond-shaped eyes, and are smaller than an average kid their age.

However, this does nothing to their personalities or heart. My brother has the biggest heart I have ever seen, and so much of it is for me, and Madison, and mom and dad. I ask myself, what would life be like without Bradley? And all I can think is, There wouldn’t be one.

So many people fear Bradley, and people like him, and all I can do is try to help them understand. Some people are bound and determined not to understand, at which all I can do is feel sorry for them. We miss out on many amazing life experiences and friendships if we push someone with special needs away, just because they are different and we’re scared and don’t know what to do. It has happened to me before, I have done it myself. I am ashamed to have done so, but everyone is human. I have never done the same mistake ever again, and hope that by reading this I have helped you to not make the same mistake I did. We wear crazy socks on March 21st to raise awareness. So please, let it be seen, let it be known, let it be heard; but don’t let it be feared. People with Down syndrome, special needs, they are just like you and me. Instead of fearing them, get to know them, make them welcome, be their friend. I want the same thing for my brother. Without him, our family like many others wouldn't be complete Oreos. And without Down syndrome, we wouldn’t have any vanilla with our chocolate. I love Bradley, as I’m sure all of you would too.  :-)

By: Sydney Burnett, loving sister of Bradley Burnett

             :-) <3  (-:

#downsyndromeawarenessmonth

          #raiseawareness

Getting Our Part Ready

Day 29:  Blogging in the 31 For 21 Challenge to Bring Awareness and Acceptance for Down Syndrome

Wow, what a day to top of a loooong week…no don’t check your spelling, it was really that long.  With the anticipation of Bradley getting his Wish, we have had to start considering how to create the best means to accomplish this in our backyard.  With the phone call that the play area was in the warehouse, and a landscaper wants to come out to get some measurements and a feel for how he wants to perform his magic underneath the play area…a brief but very real bit of panic set in.  With Eric’s heart doing its weird little dance and his fatigue levels higher than they’ve been in quite a while, I was definitely feeling the pinch.  I spent last weekend painting in Sydney’s room, and rather than painting the hallway outside her room that will have book shelves against and finally get rid of the majority of boxes that are still calling the garage home, I put that aside in order to tackle the backyard.  We started the project on the side of the house.  Where the concrete stops brick was laid out in a walkway to the back of the house where it meets paver stones that wrap around the concrete patio.  I guess because concrete is expensive, as some point, some owner wanted a bigger patio and used interlocking pavers. 

We kept the rectangle bricks for Eric to use to build a fire pit at a much later date.  ;-)  Much later!  But by the time we got to the actual pavers after hauling the bricks, we both knew that we would be working on this for the next couple years if we didn’t get some help.  So we called in our neighbor’s friend, who does concrete and patios and all that wonderful things that made out neighbor’s house a showplace, at least on the outside.  We told him the what and the why, and he said he could come by Saturday; today, and bring it all down and get all the concrete out.  AND, he wasn’t asking for all the Gld in China to do it.  So yeah, we accepted and ordered the dumpster. 

We finally had some rain here this week, and when I say rain we actually had rain drops and puddles, none of that heavy misting stuff for us, no sir, we had real honest to God wet stuff.  With that in mind, I spent the says leading up to the rain, working in the backyard while Bradley was at school.  I started hauling paver stones and stacking them in a pile so that when they came to work they would be ready to haul away.  They were going to try to get all the work in one day, because two days would really put the monetary pressure on, so I thought I could work on the non-concrete part to help out.  Well, I made it to the patio, but the work started slowing considerably as I came around the end of the patio; apparently, someone thought it would be a great idea to seal those pavers in place with cement.  They may have been stuck there for me, but not the industrial size super-duper jack hammer that they brought with them today.  Hah, take that concrete and pavers.  The work out back took three and a half hours.  That’s it.  I’m not bitter, I mean just because the work I did took more than that with me working on my own… but that’s all right.  Now we have a bit of a muddy, albeit clean (?) palette for the work to happen to create a magical playground for Bradley to have for the next few years.   I am exhausted, but he is worth it…and the girls are worth it, so I’ll just sleep good tonight and quite possibly the next week.  If I could get Bradley to sleep through too, it would be fabulous, but well, he thought four am was a good start to his day today.  It took some convincing; but, I finally made him understand that there may technically be two fours on the clock, but he was not required or encouraged to see them both.   Thank God for coffee! 

While the work went on loudly outside, I painted the hallway wall on the opposite side of Sydney’s room.  Couple nice things about this: I could see Bradley almost the whole time, and the color we chose is a soft brown that reminds me of the way I like my coffee: creamy with a little bit of coffee to make it brown.  ;-)  Once I was done, Eric and the girls came round to check it out and they all had the same ohh and ahh reaction.  Sydney even told me it was comforting, and I grinned and told them that is what I am going for, comfort.  I’m even happier by the color because it will be the one that covers most walls in our house, with a few accent walls in darker colors.  Over all, I think the effect will be pretty cool. 

Bradley wasn’t very interested in the walls, though he did really think that playing with the small artist brush I was going to use for touch ups was quite fun.  He enjoyed being watched by his sisters and finds the most interesting and fun ways to hang out with them and drive them crazy, or I mean, play with them.  He grabbed Dad and I a few times, and each of us would take a few minutes here and there to just be with him. 

And then evening came.  I thought he’d been fine all day, and he truly seemed just fine, and truthfully he really was just fine.   He just missed mom.  After dinner, I sat on the couch, and though he was watching his IPad, he came bounding over to plop down beside me, snuggling into my side.  It made me smile.  He had been great all day, and he had enjoyed his time with his sisters, now he was letting me know that it was our turn.  So he snuggled in and like a little emperor; signed for his milk, drank and handed it back to me, then signed juice, handed it back and just kept repeating the cycle.  It was as if he wanted to make sure he had my attention when truthfully, he was merely choosing the only method he had to stay awake.  We let him go like this for longer than usual; in fact, he stayed until he decided he’d had enough and moved toward his chair and away from me.  Then we prepped him for bed and he fell asleep with his head on dad’s shoulder before he could even get to his pillow.  Everyone got snuggles today. 

So all in all, it was a pretty good day.  And it was really productive, which feels pretty darn good too.  The girls did their part to keep track of their brother and both took a turn with the painting while I was outside to help Eric a little bit with some of the yard clean-up.   The bigger dumpster allows us the opportunity to get all the work we’ve been doing all cleared out rather than waiting for every Thursday to empty the yard waste container.  It is still a work in progress; but hey, at least it’s progress.  The girls were part of the work off and on, but really took turns being with their brother, and Bradley just patiently waited out the chaos as he often does, and grabbed what he needed at the end of the day.  I think sometimes he is very in tune to what we all need.  When I am really tired, he knows and he just wants to be beside me, who can ask for anything better than that kind of love to fill your life. 

Busy but full Saturday!  Hope yours was good!

Listening to Docs

Day 28: Blogging for Down Syndrome Awareness in the 31 For 21 Challenge

With Bradley's Physical always come the inevitable blood work.  We hate blood work, for us, for him, for the tech who has to draw it.  When he is required to have blood draws you do it and you hold your breath until you get that phone call from the doc.  Once a year we have to make sure that Bradley's doing okay with his thyroid medication, that his Keppra titration level is okay, his white blood cell count is where it should be...all so we can take a deep breath, sigh with relief and go about our business for the next year.  We do the full panel, we look at blood, amino acids, kidney function, liver function, vitamin D, titration of his meds, and any scary stuff like Leukemia.  At six years old, Bradley is supposedly past the worst years of potential diseases like Leukemia, so I find that I relax a whole lot more than I used too, but deep down I always have this quiet fear that my lack of worry could be an invitation to fate for something horrible to happen.

But here's my defense.  Right after I had Sydney I was having some trouble with what would turn out to be my heart.  And if you don't believe that angels walk among us, let me give you this story to renew your faith.  Eric was deployed, left the day after our Anniversary.  The girls and I were staying with a relative while our house was being built.  Buying a house is stressful, doing so with your other half a world away is stressful, and taking care of two kids ages 3 and eighteen months with very little of their needs at hand...stressful.  Let's just say I was under a bit of pressure, I don't know, let's call it stress.  Wink, wink, nudge, nudge...  I went to the local gym, I couldn't commit to long term, and I had very little money to spend, but needed a break to relieve some stress.  😉  See the theme?

One of the nicest people I have ever met was the Manager, he listened to what I had to say, and frankly, I think he felt sorry for me.  He had a couple kids at home the girls' age, and a wife to help out everyday.  So for a nominal fee, he gave me a number of workouts with a trainer, the second nicest person I would meet there, and that gave me access to work out in the gym any time I wanted, with or without the trainer.  The kicker was the childcare availability.  Hurray!!  Unfortunately, Sydney was a bit of a shy girl, and it would take me quite a bit of time to get to the gym part.  But I mentioned that these were the nicest people right, well...one day, I walked up to the childcare area and was surprised to see that the manager was sitting in the middle of the play area on a chair, with my baby on his lap, making her smile and keeping her occupied.  The lady working smiled at me, "She started crying and wouldn't stop, he came in and sat with her to calm her down so you could finish your workout."  Gratitude is a beautiful thing, even when you can barely express it around the lump in your threat.  So Sydney loved him, and he'd spend a part of my time at the gym helping out in the play area when we there.

So off I went to work.  I'd be doing great until I stopped for water, then I would get really light headed.  Happened twice so it was time to ask questions, once we got moved I did.  It was one of those situations where someone was supposed to call me and no one did, so there I was talking to my Cardiologist who starts talking about Mitral Valve Prolapse, "But you knew about that."  Me: "Um, nope."  The doc was surprised and explained how the valve was not closing all the way, and now it was letting some blood flow backwards. "It's pretty common."  Succinct and matter of fact.  Me: "Okay."  Doctor a little surprised: "You're taking this very well."  Me: "Well Doc, you didn't call me, you said it's common and you don't seem concerned so why would I be?"  So, I Dumbfounded the doc, and then we moved forward.  But don't worry, I did what I was told, it seemed to get better, and I even just had it checked specifically recently and it's so mild it's barely detectable. Go me.

Now, that's strictly to explain why it is that I wait for bad news the way I do.  Until a doc tells me otherwise, I wait.  I may bandy things around with Eric or someone close, but I don't call the doc and start asking is it A, B or C?  I let them tell me, then I ask what it is if I don't know.  Bradley's doctors might be thinking I am one cold mom, it's all very clinical and precise.  I take notes and I work on making all the connections necessary so I can try to understand how A leads to B, and how to explain it to Eric if he isn't with us.  I listen on the phone or in person, and I take it all in, sometimes I ask for it a second time when the news is bad...sometimes I have to hear it twice - like I don't believe what I heard the first time, or couldn't get my head to process it right.  Like with any trauma, our brain will detour or shut down completely in order to protect us from the worst.  The key is recognizing this and combatting the desire to let this happen...it makes me miss important points that are key to our ability to make the right decisions to come up with a plan.  Sometimes it's all about the plan, whether it be Plan A or all the way to Plan Z.  The plan keeps the world from falling apart on the worst days and keeps it smooth on the best.  We always try to have a plan that can change at any moment, with enough backup plans to make sure a little juggling and we stay on the right track. 

In our house, we are pretty good at coming up with lots of different plans, just in case.  We're getting better and better at reading docs, even the newest ones.  Bad news never comes out easy, and good news usually comes out with a sigh...  Sighs are always best!!!  And through it all, the angels you meet on the way are the ones that make sure a little light shines in the toughest days and a little love guides you on your way.  It's been ten years, but the angels that briefly inhabited my life then, still have a positive affect on me today as I will never forget their kindness, their determination to somehow make my life better, their gift to me.  Thank God for the angels that flutter in and out of my life!!! 

Happy Friday night all!  Have a great weekend! 

General? Special? Just Learn!

Day 27: Blogging in the 31 For 21 Challenge For Down Syndrome Awareness

Bradley has spent his third day “blending” into another classroom, so far so good.  It’s not like he is going into a regular day class or going for a long time.  He goes into a Special Day Class and he goes twice a week for a full fifteen minutes each time.  On his IEP I think it gives him a whopping 1% of the time in blending. 

I have spent most of my energy with the medical side of Bradley’s life, that’s not to say that I don’t work on the scholastic side of things with him, more like I rarely give the school side of things too much of my attention when it comes to Inclusion or Blending.  Bradley spent the first few years of his “Schooling” at the house in a home medical program because every time he went out he would get sick and every time he got sick it was drastic.  But he started getting stronger and because his Pediatrician in San Diego was a retired Fighter Pilot, he was like: let’s send him and see how he does.  As I never once doubted this man, I said: “Okay…let’s do it” with a lot more bravado than I felt.  But I also never wanted him to see my cowardly side, so there you go, we slowly integrated Bradley into a school setting.  At first he went after everyone went home, and of course loved it there.  I mean who wouldn’t, it was the coolest pre-school classroom and it made me strongly consider returning to my own pre-school days – I mean, being a pre-school teacher, yeah, that’s what I meant.  And here’s irony for you, in a classroom where the kids were compromised in some way, with really strict dietary needs…this class had these amazing teachers and parents that threw the BEST parties with the BEST food!!!  ;-)  A whole new take on school parties.  All lovely people, the teachers and the parents.  We were thrilled to have this be our start. 

Speed ahead to where we are now, Bradley is in his second year of organized schooling and he’s doing so very well.  He is in a special Ed classroom where they know how to take care of his G-Tube and are trained to handle his seizures.  I can remember when I was a kid, we had a boy in our class who would have seizures (awful for him), and a boy that suffered asthma and they weren’t separated from the rest of us, so I figure his seizures shouldn’t be a hold back for him.  The G-tube, I always wonder where that would leave him at school.  Will he always have to be in a Special Ed classroom where they can take care of his G-tube, or would he be able to be in a regular classroom where someone could still take care of it if and be trained for seizures?  And then you have the issue of the potty training.  His GI Issues make his potty training a nightmare, and I have to wonder if he could ever be in a regular classroom until he is without diapers.  Oh and his speech, or lack thereof…where does that leave us?  How prepared is a classroom to take a non-verbal child? 

So with all that, I don’t spend too much time thinking about whether we should be pushing Bradley into general ed, but I do spend a considerable amount of time wondering whether or not I should be thinking about this stuff.  You can’t spend too much time on Facebook and other websites without running across all the parents that are out there that are fighting to get their kids into general ed.  How integration is the key, how anything less is unacceptable.  And I admit that I avoid most of that right now.  You see, you get sucked in pretty quickly when you read all that.  You start to think you aren’t measuring up to everyone else, that somehow by Bradley not being included and in a regular ed classroom that we are failing him.  But that runs right back into comparing your child to another.  How the Hell are you going to try to compare a child with Down Syndrome with all of his Medical issues to another child with Down Syndrome who hasn’t any of the medical issues that he has had? 

It’s simple really, you can’t.  You have to force yourself to stop the comparisons in your head.   Some kids are going to be able to do it and some are not.  I think that the truth is simply this: Bradley is going to fall somewhere in the middle.  He isn’t going to fall through the cracks because we will not allow that.  As for his education, we are starting with this short time in a Blended classroom to see if he can handle leaving a place he knows, to go into a new place with a new teacher, and would he do well in there, and would he listen to a new teacher?  Lots of questions to answer in one little fifteen minute classroom session, but answer we must.  The only ones that thought he could do it were his Dad and I, his teacher in his current classroom, and his Speech Therapist.  The Bureaucrats that sit on these IEP meetings, they smiled at me and nodded and fully expected him to fail. 

And that’s the thing, they expect him to fail – the ones that live on Team Bradley, we all expect that he is going to not just succeed, but blow it away.  We have complete Faith in our little guy, whichever path he takes, wherever his path leads in a General Ed, or out.  At this point, we aren’t all that concerned with where he spends his days at school so much as making sure that we plant the seeds so that should he be moving into a different orbit later, we won’t look back on this time and wonder why we didn’t do more to prepare him.  I have plenty of doubts, so I don’t need to add to them. 

To those that are sending your kids with special needs to general ed classrooms, we admire you and while we wish our kid could do that, we know that today is not the day.  So please, don’t judge me for not having my son there, I have him where he is safe and learning and growing.  Keeping him where he is at is not a step back for the Special Needs community and integration.  Keeping him where he is, is the only plausible step down any road he ventures to tomorrow.  We will keep working on the alphabet and speech, and someday he will be reading and writing his name.  He will be able to do all the things that he needs to do in his life to be happy and contribute in positive ways to society, with or without general ed. 

On the days where life overwhelms me and the constant push gets the better of me, I will take some time to wonder who and where he would be if he hadn’t had all the issues he does and could have been integrated at Kindergarten.  I’ll wonder if I would be one of those parents jumping on those Facebook pages and giving the great news about how awesome my kid is doing, or how the next fight to modify homework is going...how integration works and my kid is paving the way.  But I’m not that parent, and that’s not my sweet boy, might never be, and in the end that’s okay.  When it comes down to standing in the road and trying to choose the right path out of the myriad of choices laid out before us, all that matters is that Bradley is here, is healthy, is happy and is living a good life.   He needs to be proud of himself and know that every day he has lived the kind of life that allows him to look at himself in the mirror and meet his own eyes, because he is a good person.   I tell his sisters the same thing, at the end of the day you have to meet your own eyes and know you’ve done your best.  What class you are in in school: Special, General, None…none of that matters at the end of the day.  How you treat yourself and others, how you show respect to yourself and others, that will help you gauge your self-worth.  Don’t let it be from someone else’s opinion.   Their mom takes this advice too, and I leave those sites and those sometimes harsh postings when they make me doubt myself more than I already do.  Every day we have to do the best we can to make the lives of all three of these kids work, and make their growth into adults successful.  But especially for Bradley, we have to take what has been given and nurture that into what will bloom tomorrow before we can make each planned step count.   And we definitely make each planned step count for all we can. 

I am proud of my three kids.  I am proud of my son.  What he has battled through and how he has come out as amazing as he is…yeah, he’s more than something special.  I want him to have the best life he can have, where ever he needs to plant his roots to do it.  In, out or around Special Ed! 

Have a great Thursday night! 

A Boy and His Dog

Day 26: Blogging for Down Syndrome Awareness and the 31 For 21 Challenge

Well, two days in, and the cat is no longer running into the mirror or the sliding glass door.  We figure he is after that ginger cat looking back at him: he either has a head ache and is waiting for it to ease before he goes back on the offensive, or he has determined that the other ginger cat can stay.   For now, he thinks it’s a laugh riot to stare at the dog, waiting for her to fall asleep and then jump at her. The dog, does nothing, doesn’t even bother to open her eyes, but the cat...he jumps back, pauses and then attacks again, still no response…the third time, he attacks and she lifts her head to see what the annoying gnat is doing and the cat jumps in the air and backwards because her movement has scared the bejesus out of him.  I admit, I laughed out loud and had Sydney come running for the play by play. 

Silly cat!  Good Grief!  The good news in this story is that the future service dog has grown to let the cat alone.  She never wanted to do anything but play with that cat, BUT, she would bolt and if Bradley were ever in the way he would be flattened if she continued that behavior.  I’m ecstatic that we have that one under control.  She will sit, lay down, and if there are treats involved she will stay for a few seconds…almost a minute.  So her long stay is an issue, and her meet to greet is still a nightmare.  She and I don’t get to many visitors, so she forgets what she is supposed to do. 

Eric wanted me to take the lead on her training because she will be with me the most because I am with Bradley the most.  And sometimes she rocks it with me, but then we try a second session later and it’s almost like she has no idea what I am asking her to do.  And I look like an idiot because I am talking to her, “How come you did all this before and now you won’t even sit?  What the Hell?”  You’ll all be pleased to know that she does not reply, though she does tilt her head in the most adorable way.  “Now you want to listen?”  Grrr….  Which makes her growl back at me playfully…yeah, end of training session and I go looking for chocolate and wonder why the Hell I have no chocolate stashed anywhere in this house…oh right, my waistline.   To be fair, I sometimes feel like after a session with me, the dog is sitting there wishing she could have one of her bones… or even better someone’s underwear – cleanliness is not important.  Or even Bradley’s wooden train set, one of those pieces that might have been left out…that would sure ease the pain of these sessions I am sure.  Hah, I’m on to you dog!  I run through this house like a whirlwind, constantly looking for things she might enjoy chewing on, and inevitably – she outsmarts me.  She’s quick, and has a better nose and higher drive than I do. 

But in spite of all this nonsense, she is the brightest little light that has come into Bradley’s life.  He went from mildly curious about her to looking for her.  And though she is still quite in tune with the adults that pay for her dog food, she doesn’t wander too far from him.  In the mornings, he used to get up and make it to the living room before I could even find my glasses.  To their mutual benefit, they would both be outside, her to her morning needs, Bradley to his daily mischief.  What always made me feel a wee bit better was that when Bradley would venture down the side of the house to more dangerous areas, she always go with him.  I figure they are well matched in their constant need to up their shenanigans, but at least he has a buddy to get into trouble with, and a buddy that checks on him, one that he can use to help get himself back up again when he invariably falls down.  We keep upping our Bradley proofing, so he rarely makes it out before I get out here too, but still…it’s a work in progress.

I know experts say that dogs hate to be hugged, I know this…but he’s only six, and that’s what he needs the most.  So, Sheba might not like that Bradley hugs onto her, and she may not be a fan when he bends over her to hold on and rub his face in her fur…but I sort of think she enjoys it as much as he does.  She waits it out and tries to lick him.  She is learning to stay with him inside.  We put her to sit, and down near his chair, and when he chooses to sprawl on the floor, she will bring her bone and lay beside him or at his head.  She is making the moves to willingly be with him and that is magical.  When he cries, she wants to know why, and when he’s in the bath she believes that she is saving him by trying to empty the tub by drinking all the water.  We’re working on that one to the point that now she sits with her head on Eric’s knee while he sits on the side of the tub and she never takes her eyes off of Bradley.  Makes baths more of a challenge, but we aren’t really afraid of challenges.  The simplest things turn into the biggest challenges before we realize it.  Shrug… 

She’s thirteen months old, and though she seems to be at her full growth, she’s still a really big puppy inside.  We’re hoping to see her grow out of her rebellious stage and into her whatever the next stage is that is hopefully calmer and more willing to listen stage.  Geesh…I think I am waiting for the exact same thing with the girls…Holy Crap…I have three teens in my house at one time!  Well, a fourteen year old, a twelve year old that is a bit ahead of her peers, and the dog….  And to tell you the very honest truth, I couldn’t be happier. 

I love the chaos that comes with three kids and a dog.  I love that in this moment, Bradley is as stable as he ever gets, and we are allowed to focus on life other than medically.  I do so with a grain of salt, understanding that the other shoe will inevitably drop; but at the same time, focusing on the ability to keep that shoe up there where it belongs for as long as I possibly can.  These are the best years and I make sure that kids know it, and feel it and believe it.  When they are grown and gone, they will remember these years the most, their young minds barely remembering growing up in Japan as the best place to be, but not sure why.  No pressure, but these years have to be good!  

Okay, off to work on that long down sit; one of us is going to master this, and if it’s me – I think I’m okay with that.

Happy Wednesday!!! 

To Your Corners...At last!

Day 25: Blogging for Down Syndrome Awareness and the 31 For 21 Challenge

So the epic moment everyone was waiting on; well Madison and Sydney anyway, happened at last.  Last night, Sydney spent the first night in her new room by herself.  Granted I was excited in a way because I was happy to see the girls happy and really happy to have them in their own space so that they will maybe ease off each other a little bit.  But I also knew something important; this is a defining moment for them.  They will no longer be living in the same room together and somehow learning to get along.  It feels like we are in one of those moments that we will remember forever as the moment they both will separate and go their own way always, or they will decide to find their way back to each other as friends and sisters.  I guess time will tell, but I know standing in Sydney’s room last night as Madison was “Helping” to move Sydney, and Sydney felt Madison was pushing her out of the room, I had to take it all in and feel how painful this really is for a mom.  These girls are rarely not at odds with each other, my hope is that they will find a way to connect and be close when they are older, but I also feel the clock ticking and I know that their time under the same roof is flying by. 

Almost everything is out of Madison’s room that is Sydney’s.  Sydney has to empty her tower so that we can move it easier and maybe not break all its contents.  She is okay with it not being moved yet, but Madison is constantly asking us when we will move it out.  We told her we’re thinking about leaving it forever just to irk her, mostly because I wanted to use the word “irk” and she gets obsessive.  Trying to bring her back from the edge, good grief.  And I think it is important to gently take Sydney completely out of that room and away from her sister, but yet not take too long because we want her to feel like she is at home in her new room completely.  She had a late Volleyball game today, so we’ll try to move it tomorrow, and this weekend we’ll get her a rug to make her room less of an echo chamber and feel more homey.  Then we’ll move on to the next project: concrete removal this weekend.  Madison has no idea how much I would rather sand down her walls to prep for painting.  HAHA… 

So the girls retired to their own rooms last night after dinner, both fussing over their new situations.  In all the activity Bradley has been pushed to a later bed time than we usually do.  Normally he’s down by 7:30 at the latest.  I stooped down to check in on him just before I went to get his night time meds and he looked at me and he had the darkest circles under his eyes.  Poor Baby!  I told Eric, “No Bath” straight to meds, Jammies and bed.  Eric headed to his room with him and I grabbed his meds and met them there.  Bradley barely kept his eyes open during that and was asleep on his pillow within minutes of me sitting down with him; I didn’t even open the book. 

On my way back from his room, I walk by Madison’s room, stop and turn back to her room.  Inside, sitting where her bed USED to be was Sydney, sitting on the floor.  Madison was on her bed doing her homework.  I look at Sydney: “What are you doing?”

Sydney: “My room is lonely.”  And she started to laugh.

Huh?  I merely shook my head and kept walking.  There might be hope yet? 

Sydney went off to her room and as I walked by to tell Madison to get ready for bed, I look at where Sydney’s bed used to be, and Toby the Ginger Cat, is lying on the carpet where he used to always lay on Sydney’s bed.  I laugh and move on just shaking my head.  This cat had run into the patio door twice already that day in Sydney’s room.  He then bounced off the mirrored closet door in Madison’s room twice last night, so I guess he was really tired, possibly traumatized by his activities, possibly traumatized by the moving around…definitely a total crazy animal last night. 

Turns out he’s still nuts.  He hasn’t bounced off any mirrors or doors tonight, but he still feels the need to sleep on the area where Sydney’s bed used to be, we’re all wondering if he’ll ever figure out where she moved too.  Who knows? 

As for Sydney, she said she slept pretty great last night.  Since Madison has a tendency to talk and walk in her sleep, I would think the lack of activity in itself would be really peaceful for Sydney.  I kind of envy her if you want to know the truth, I wouldn’t mind some peaceful sleep too.  J 

Happy kids, freaked out cats…all good in our house, and really quite funny!