Saturday, December 6, 2014

Love and Intuition - Jacob Style

I don't know what it is about my boys.  But I am truly blessed.  

My girls are pretty freakin' awesome too.  Elisha is uber talented in EVERYTHING she does.  It's kinda disgusting, actually.  And I'm her mother.  She plays Division 1 Track - 4 events, was offered college scholarships in music and volleyball as well, is a truly phenomenal artist, is beautiful, smart, funny, sweet, caring, and dynamic.

Her 5-year-old sister is her mini-me.  Her goal in life?  To rule the world by the time she's 10.  She may actually do it.

But with all the talents my girls have, my boys have in equal amounts of intuition and love.  I'm not saying that they're stupid or ugly.  Quite the opposite, in fact.  Nate has a near photographic memory. And you've seen the pictures in other posts.  My family was not hit with an ugly stick (thanks to their father's genetics). But the qualities I cherish most in my boys is their concern for others and their laid-back attitude.

My girls? Well you don't get to rule the rule by sitting back and doing nothing.  My girls are a bit high-strung  which is why they're over achievers.  It's go go go all the time.  Courtney never shuts up.  Ever.  It's question after question after question as her little mind absorbs as much information as is humanly possible for a 5-year old.  Elisha is working her butt off at college from 7 a.m. till 11pm most nights, and still finds time to come home on the weekend to be a big sister to the youngers (Jake and Courtney).

Nathan and Jake.  Well, they just know.  Nathan is a watcher.  He observes and absorbs.  Jacob explores and discovers.

Up until today, I just considered Jake inquisitive (that's a very nice word for 'the little boy gets into virtually everything in our house'. He takes it apart, tries to put it back together, gets frustrated, throws it on the floor and moves on to something new while I try to pick up after him - over and over and over again).

Today was not a good day for me.  I somehow pinched a nerve in my shoulder rendering one arm useless, then proceeded to get a nasty migraine that had me pretty much incapacitated for the entire day and well into the evening.  Throughout the day, as I was laying on the couch nursing the pain in my body, Jake would come hang out with me.  He'd bring his tablet and sit on me and quietly play.  If I managed to pull myself up to a sitting position, he'd sit on my lap.

By 6 pm I decided to try to sleep some of the headache away while the olders (Nate and KC) watched the youngers (Courtney and Jake).  I was in my pitch black room 5 minutes before Jake cracked open the door and snuck in, closing the door behind him.  He climbed up on my bed, laid down next to me, and cuddled quietly in the dark next to his sick mother, putting his hand on my face, then petting my hair, trying to comfort me.

It was the sweetest thing!  My adorable 4-year-old son was trying to take care of his sick mom.

He stayed in the pitch black room with me for another 20 or 30 minutes before he walked out, got my Iphone, came back in, and watched Madagascar next to me (still in the dark) and held my hand.  He stayed next to me until it was his bed time, which wound up being him cuddled up next to me until he fell asleep for the night.

After a night like tonight.  No one can tell me that having a child with Down syndrome is a trial.  No one.  Nuh uh.  Jacob is not lucky to have me as a mother.  I  am lucky to have Jacob as a son.




Friday, December 5, 2014

Savouring the Little Things

Yesterday my post was filled with negativity.  I am not a negative person.  I don't want negativity to eat up any more of my life than is absolutely necessary.

So, today, I choose to relish and share, but a mere moment of the blessing I call Jacob.

Two days ago it was spaghetti night.  Spaghetti is one of Jacob's favorite foods of all times.  Bar none.  It's always a treat to watch him eat spaghetti.  Not because he makes a ridiculous mess (because he does), or because he refuses to use a fork (which is also true), but by the sheer revelry he displays when savoring every last bite of his meal.

We're not talking a pile of spaghetti the size of an egg.  No way!  Jacob eats as much spaghetti as I, a full grown adult, eat.  I understand that lots of kids with Ds don't have an 'off' switch with food.  And we have yet to determine if Jake is that way yet - basically because all the rest of his siblings are athletes (and GIANT athletes at that - Elisha is 5'10" and Nathan is 6'2 - at age 15) and eat more than a football team combined when they're home.  So I have nothing to gauge his eating habits off of yet.

Anyway, I digress.  Back to Jake and his spaghetti fetish.

So we sat him down with his rather large serving of spaghetti.  As the rest of the family finished their meal, I looked over to watch Jake who had been unusually quiet.  He took one strand of spaghetti between his thumb and pointer finger (great fine motor skill practice, by the way!) and slowly pulled the noodle from the plate.  Pulling...pulling...pulling until the twelve inch string was lifted as high as his stubby little arm would go, dangling just above his mouth, enticing him to bite.

After a few seconds of watching the noodle wiggle in the air, he slowly lowered the very tip into his mouth and bit down with his lips - not his teeth.  Don't want to break the noodle, after all.  Then, he sucked, slowly drawing it into his mouth, until only a few inches remained.   As he sucked, his eyes rolled back into his skull in absolute bliss, then he closed his eyelids, half smiling at the taste of his favorite food. Then he pulled the noodle out again, sans the sauce.

Next, he repeated step 1, however, this time, he sucked harder, letting go of the noodle with his hand, and allowing the strand to flip and flop around his mouth as it got shorter and shorter, and disappeared.  Smack!  All gone.

He took a moment to chew the soft pasta and swallow, then looked at his plate and half smiled again before rooting around for another perfect noodle to repeat the process.

As I watched Jake eating his spaghetti, I was struck by how important the little things are - not only to him - but to all of us.  If we continue to get caught up in all the big stuff - then how can we appreciate the little things?

If I continue to worry about making sure all of the bills are paid on time, or keeping the house spotless (which it is NOT) how can I appreciate the fact that my husband works DANG HARD to make sure that I have the opportunity to stay at home with our little ones full time? I get to make sure they know their alphabet, hold them when they wake up from their nightmares crying, laugh with them when they run circles in the living room chasing one another, teach them to be kind to others and to take responsibility for their actions, and raise them to be productive parts of society.  This is especially true with Jake because he needs just a smidgen more time than his siblings.  And I'm blessed with the opportunity to be that kind of mom because my husband makes it so.


 I am blessed to be able to watch Jake savor his spaghetti, or run around pretending to be a robot from Megamind, or run in circles when the music comes on, or drive Courtney to school and pick her up, and volunteer at her school once a week.  I'm blessed to be there when Nathan gets home every day and to be able to ask him about his day, and tease him about girls.

Ah, what a tremendously blessed life I have.  Thank you, Jacob.  For showing me it's the little things in life worth enjoying.  All those little things begin to add up into one great big - giant even - epiphany of happiness.   Life is good.


Thursday, December 4, 2014

Discrimination At Its Finest

NOTE TO READERS:  This experience happened about 3 weeks ago.  I was so worked up over the incident, I decided to table this entry until I could be more objective about the experience when writing. I believe taking a moment to step back and let things 'settle' was a good choice - if for no other reason than avoiding a blog riddled with curses and spewing with venom.  So, please realize that this post is severely subdued compared to the 'day after' emotions I was having. Do not think I don't take this sort of thing lightly.  I do.  However, I refuse to let the indignity of such behavior taint who I am as a person and how I allow my children to see me react to such situations.

*********************************************************************************

 I consider myself extremely lucky when I say that in the four years that Jacob has been a part of our family, I have never once felt as if he was discriminated against or treated poorly.

We have been truly blessed with the people we've come in contact with from the moment I discovered he had Trisomy 21 before he was born up until this afternoon.

I'm ashamed to say that when I perused the Down syndrome message boards and listened to parents vent and scream about how cruel other people were to their children, I thought they were merely thin-skinned and needed to toughen up a little.  People aren't actually out to discriminate us, they're just ignorant, right?

After today, I must take pause and wonder.

In just a few short weeks, my 15-year-old boy begins basketball.  A prerequisite, as I'm sure is required in every school across the country, is a sports physical to ensure that he is physically fit enough to participate in the strenuous activities associatated with high school sport.

A couple years ago, my family physician's office was bought out by a major corporation.  In fact, so was my pediatrician's office, our urgent care office, and nearly every other medical facility in our city.  About 90% of every medical facility (hospitals included) are owned by one of two major Corporations.  Seeing as how I'm about to rant, I will not name names so as not to be slapped with a stupid defamation lawsuit. Grrr.

From the moment the physicians were bought out, we were no longer able to make an appointment with our doctors and get in to see them same day...or within the week...or even within the next two weeks.  On average, we must wait 3-6 weeks before we can see our physicians.  I made an appointment to have Jake's eyes checked today (December 4th) and they will not be able to get him in before February 24th.  See what I mean?

That's fine. Whatever.  We'll go to urgent care when the kids are sick then, right?  You'd think so.

I found out about my older son's need for a physical 2 days before it was due.  Great.  Urgent care, here we come.  We show up 2 hours before they close, and are immediately given crap.  No.  They won't accept insurance.  We  must pay cash for a sports physical - even though the sign next to the receptionist clearly says that co-pays are expected.  Oh, wait.  It's 5:45 pm, I'm not sure the doctor will even see you because they stop doing sports physicals after 6:00.  Um. it's not 6:00.  And where did you post the allotted times for sports physicals?  I was on your website.  I'm in your lobby.  Nothing.  I'm not a mind reader. Work with me here.  Plus, it's a SPORTS PHYSICAL.  Listen to his heart, weigh him, check his blood pressure.  Sign the piece of paper. We're on our way in less than 5 minutes.  It's the easiest $50 this doctor is gonna make tonight.

The receptionist takes our paperwork - already filled out and waiting to be signed by the doctor.  We wait in the lobby for 35 minutes to find out if they will even TAKE us.  The nurse opens the door and motions to my son and I to come.  We step behind the door, she closes it, and then proceeds to tell us that they will not see my son.

Why?

Because we checked a little box that said our family had a history of heart problems.

I proceeded to tell her that the "history" was Jake.  Our 4 year-old with Down syndrome. Those heart issues were directly related to his disability and did not increase Nathan's chances at having heart issues.  It had everything to do with Jacobs extra chromosome - which Nathan obviosly does NOT have.

I kid you not, when she heard that Jake had Ds, she sneered.  I was pissed.  She then told us it was policy not to do sports physicals when the family has a history of heart issues.  I again repeated to her that Jacob's heart defects did not increase Nathan's chances of heart issues. I asked her very nicely to relay the information to the doctor and ask that the doctor make an exception.

She made another face, and said she would, then ushered us back to the waiting room to wait another 15 minutes.

A new nurse called us back.  She again told us that they do not do sports physicals for people whose families have a history of heart issues.  I relayed the same thing to her about Jake and it not increasing Nathan's chances of having issues.  This lady made an even nastier face than the first nurse and repeated the policy.  I asked her if she spoke to the doctor.  She repeated the policy again and told us that they are an Urgent Care facility and that this was not an urgent care issue - we needed to go see our family practitioner for such matters - someone who knows our family's medical history.  Then she told us that they will not serve patients who have a family history of heart issues.

At. All.

She opened the door, and essentially kicked out out of the building, refusing to see us.  Why? Because Jacob has Down syndrome.  My 15-year-old son who has NEVER been seriously sick in his life.  EVER. was denied medical treatment because his little brother had Down syndrome.  Our entire FAMILY will be denied medical treatment from that Urgent care facility - and every other facility holding that company's name (remember, they own nearly half of all medical facilities in our town now) because Jacob has Down syndrome.

Discrimination at its finest, people.

You wanna know what the funny thing is though?

This urgent care facility has essentially been our primary care provider for the past 4 years.  They've been seeing our entire family - including Jake (who, by the way has a giant scar down the front of his chest from heart surgery, so there was no hiding his heart history) - whenever we were sick. They KNOW our family history.  But because we checked one tiny little box, information WE VOLUNTEERED, we now had the plague.  No touchy.

I went home livid, to say the least.  I ranted to my husband.  I called one of my dear friends who also has a child with Ds.  I stewed.  I got madder.

I have decided that this is not over.  I am a mother of a child with Trisomy 21.  If I do not stand up for him and my children, I'm allowing this behavior to perpetuate.  I'm allowing this company to continue to discriminate.

This week, I will be writing a letter to the company's corporate office.  And I will be writing a letter to the urgent care facility, and I will be contacting our local, regional, and national Down syndrome coalitions.  And then I will be contacting an attorney.

Do I want money?  No.  Do I want retribution? No.  Do I want an apology?  Not really.  I want the policy to CHANGE.  I want people with disabilities - AND THEIR FAMILIES - to be treated just like everyone else.  Isn't that what the American Disabilities Act is all about?  Equal rights?

Quit punishing us for having, and loving, a child with disabilities.  Let us make our own choices - quit making choices for us.  Quit trying to treat us like degenerates or second-class citizens.  Because we AREN'T.

If anything, children like Jacob make us better people.  Jacob is a blessing.  Nothing less.  And I will not allow anyone else to treat him otherwise.

Now...off my soapbox.  I have some work to do. :)

Friday, October 31, 2014

Birthdays and Buddies

What a crazy busy week it's been!

Jake had is fourth birthday on Saturday (Wahoo!) and it was surprisingly low-key.  What I love about this age is that there are no real expectations from the little ones.  He didn't care that I bought him a cake.  He didn't care that the gifts never actually got wrapped - he liked playing with the bags for days afterwards.






He LOVED the car we bought him.  It had buttons for him to push that created sounds and flashing lights on the top of the hood, then the car moved forward - fast if he was on the linoleum.  The sounds drove the rest of the family crazy, but I think that was part of the mystique for Jake.

For quiet times, we bought him several small dump trucks, front loaders, bucket trucks, etc.  They're perfect for the palm of his hand and he can carry them anywhere, which is a bonus for him.

And, of course, a magic microphone to help encourage his speech.

Like I said: Low key, but nice.

Tuesday we dressed him up in his knight costume and the little ones went trunk or treating at our church.  He's been munching on candy all week.  I will be soooooooo happy when the candy is gone!












And yesterday, I got to see Josh, Jake's NICU buddy - also with Down syndrome, who was born the day after Jake.  Josh and his mom came to town and we got to spend a little over an hour catching up with one another as Josh had his monthly chemo and check-up.

I am so lucky to know Marla and Josh.  Not only because they're a great family, but how many people have the opportunity to have a child nearly the EXACT same age as your own to kind of guage things off of?  I can look at Josh and realize that he's a much better talker than Jake, but Jake is taller and bigger (probably due to genetics and the drugs from the cancer).  Both of us are going through potty training right now, and have discovered that both boys are doing it backwards from our other kids - mastering pooping in the toilet first, then peeing.  Who knew???

It's been a great reminder that we're all in the same boat, our kids do things a little differently, and sometimes slower than non Ds kids, but we're all getting it.  And, really, would you want it any other way?  Nope.  Not me.  I love Jake just the way he is.  He enriches my life in so many ways that I wouldn't have experienced if he didn't have Trisomy 21.  He makes me a better mother.  A better person.  And that's what it's all about, right?  Being the best person you can be.  Sigh.  Life is good. :)

Friday, October 24, 2014

Potty Training: Jacob Style

Once again, Jacob has defied my expectations :)
Yesterday, I was going about my business and he came up to me, grunted, and pointed to his pull-ups.

I asked him if he wanted to go to the bathroom, and he nodded. Then he took my hand, and pulled me into the bathroom where we have the potty training toilet.

Now, mind you, I haven't pushed potty training on Jake for the last couple of months because of the chaos of school. I wanted things to settle down before I pushed it on him again.

But once we got into the bathroom, he had me help him take his pants and pull-ups off, and POOPED right in the toilet. 

For any of you that have potty trained before, the potty always come first, and then months down the road, they get the hang of pooping. 

Nope.  Not Jake.  He wants to cut to the chase and master pooping first.  

Needless to say, the next couple of minutes were filled with high-fives, laughs, giggles, and squeals from his mother.  I guess we'll be doing some serious potty training these next couple weeks.  Jacob insists on it!  

Wednesday, October 22, 2014

Boo Boos and Buses


Today is a short entry...thank goodness.  

It's not my favorite, but it's part of life. 

Yesterday was picture day at the school.  Wahoo!  It's always fun to see how much Jake has changed from year to year.  

He chose out his own shirt, we put mouse in his hair to keep the cowlicks at bay, and he was stylin' by the time we were outside waiting for the bus.  

Three minutes before the bus was to arrive, as luck would have it, he was running up the driveway and tripped.  This isn't one of those oops-I-tripped-now-I'm-going-to-get-back-up kind of trips.  Oh no.  Not my Jake.  It was more like a trip over your own feet, skid for 3 feet, and check to see if any teeth are missing kind of trips.  

When the bus arrived, I had a white washcloth that had blood all over it, my T-shirt was bloody, and I was still picking debris out of his mouth from the roadway.  Plus, he had a road rash the size of a silver dollar on the bottom of his chin.  Yeah, school pictures are gonna be fantastic this year.  Not. :|

On the upside, Jake is beginning to really start babbling.  I'm hearing tons more consonants coming out of his mouth, and he's trying to say entire phrases (yes!!!!!).  This morning it was "I did it!" and this afternoon, he said "buh..." as a school bus drove by.  I squealed.  It's the little things when it comes to speech for him.  And progress is still progress.  It's great to finally see some coming out of his mouth!

But, of course, we couldn't leave this little entry on a good note.  Because it's important to see that Jake is multifaceted.  He's smart, he's feisty, he's funny, he's clumsy, and...he's a runner.  

Today when the bus came (and I silently celebrated a no-trip day), I walked four steps to get his back pack.  I kid you not.  FOUR steps. In those four steps, he decided that standing still was not enough.  After all, he saw the bus and he wanted to get on!  So when I turned my back, he put on the gas, and ran out into the middle of the street to great the bus.  GAH!!!!  I don't think I've ever ran so fast as I did trying to drag him from the middle of the road.  Luckily, the bus was still 1/2 a block away and she slowed the second she saw him step foot on the street.  But it's scary nonetheless.  And the driver and her aid had a good laugh about the situation - thank goodness!


Saturday, October 18, 2014

Jacob's Annual IEP Meeting

This week was the annual IEP meeting where I sat down with all of Jakes therapists to discuss his progression over the past year and their goals for the next 12 months.


The Occupational Therapist informed me that Jake is at or beyond his age in this department, using his right hand 95%+ of the time, using forks and spoons, doing well with his signs, and using a 4-finger pincher grasp when coloring.  He is drawing, but his goal is to make the plus sign and a complete circle on his own - things that a normal 4 year-old would be attempting to do. She says he does pretty well with the scissors, and LOVES to cut things (so hide the scissors at home!), but he can't quite do a straight line all by himself yet. She said another goal was getting him to button and un-button things.  

The Physical Therapist reported that Jake is quite the runner (bahahahahaha! - ya think?? ) and has escaped from the playground area a few times.  But they're working on getting him to actually listen to instructions and follow them.  She said that he's stopped a couple of times when they called to him, which in my estimation is a HUGE improvement over the last 12 months.  She said that he's only used the toiled 1 time, so there is lots of improvement there.   I explained that Jake does quite well when he's buck nekkid, but the minute you put clothes on him, the reverts.  So, that will be another thing we will continue to work on. 

Speech Therapy was actually better than expected.  He's enunciating several of his vowels, signs several words, and is making slow progress.  I asked if they thought there were issues with his ears, and the ladies all agreed that he listens to instruction.  We decided that his issues are primarily due to stubbornness (go figure!)




Jake is now learning his colors in sign language, follows simple instructions, and they are working on giving him 2 sequential instructions to follow, which he does occasionally.  

He's extremely cognisant of the feelings of others, and will hug anyone who is sad, and try to care for anyone having fits or crying.  

The ladies seem to adore him, which is always a good thing from a mother's perspective. 

All in all, I'm thrilled with his results.  He's at, or above age in everything except for speech, and even in that area progress is occurring.  Yay, Jacob!!



Tuesday, October 14, 2014

A random story about Jacob

 *All names, locations and information was made up to protect the innocent*



Once upon a time there was this little boy named Jacob. 

He had 3 big brothers and sisters who always seemed to have fun.  Jacob wanted nothing better than to run and play with his brothers and sisters. 
But because he was so little, he was often left behind.  

Poor Jacob.  He was so sad.  Being little was nooooo fun. 


One day, little Jacob decided he wasn't going to stay home any more.  
So he filled his backpack with goodies, and decided to go on an adventure of his own

During his travels, he want to the botanical gardens,

National Forests,



And even the grasslands of Africa.


Every day was an adventure for this little fellow. 


After traveling the world, little Jacob decided it was time to go home.  
He packed up his bags, and made the long journey back to his family.
His big brothers and sisters greeted him with open arms and told him how important he was to the family.  They had missed him soooooooo much!  Jacob never realized how important he was to his family, and decided that he would save the rest of his travels for another time when he was much much older.  

The End!

P.S. ~ This was just an excuse to showcase some of my favorite Jacob pictures from the last couple of weeks :)