Dear Parents of Children with Down Syndrome...

I've always known I'd write a book about Jacob. 

I knew it the moment he was diagnosed with his disability.

I knew it before I knew I'd become a writer.

His story needed to be told.

This year is the year I will put this knowledge to action.  And, in true Allred fashion, I'm going overboard. 

I'm writing not one book (as blogged about before), but two. And I'm outlining a third book. This is in addition to the four nonfiction books about growing up in a family of ten that I'm re-releasing on Amazon, the six-book YA thriller series I'm self-publishing, 2 anthologies I'm participating in, and a YA urban fantasy I hope to pitch to a traditional publisher in June.

Am I insane?

Probably. Yes.

I've been putting off my "Jacob" books for years, telling myself I'd find time later.  But in light of all the abortions based off a Trisomy 21 diagnosis, and some countries even trying to eradicate Down syndrome completely, I can't put it off any longer. These books must be written NOW.

With that being said, I'm putting a call out to any and all parents of children who have Down syndrome.  I'd also like a select few people who don't have kiddos with Down syndrome but are closely affiliated with them - Special Education teachers, brothers and sisters, aunts and uncles, doctors and nurses, therapists, etc.  I'm looking for letters.

Why?

Because when Jacob was diagnosed, I was inundated with condolences. "I'm so sorry." "I don't know what to say." "What are you going to do?" Sometimes silence and shock.

Where were the congratulations and squeals of excitement I got with my other three children?

I aim to fix that with this book. This will not be a book filled with, "I was horrified and then I learned to love my baby."

This book will be, "Congratulations on having a new baby!  Your life is about to embark on a new adventure. And it will be amazing!"

 Am I going to candy-coat everything? Nope. But my emphasis will be on looking at the good rather than obsessing over the possibility of bad.  Embracing the similarities rather than freaking out about the differences.

If you're interested in being a part of this letter, I want to hear from you!!!

Growth Spurt!

Oh my goodness!  My child is growing. 

Whomever said my child was going to be small because he has Down syndrome had no idea what they were talking about!

Jacob is 18 months younger than his sister, and already weighs more than her.  Okay, in her defense, she's still a foot taller than him, but Jake is a TANK.

You wouldn't know it if you saw him.  But the child is dense.  Somewhere underneath that belly of his, there's a six-pack. Maybe a 12-pack!

Since he finished school in June of last year, he has grown FOUR SIZES.  That's not a typo. Four sizes.  He finished school a 4T last year.  He is now outgrowing his 7's.  Well, sort of.  His waist is too big for the 7's, but the pant legs are about 3 inches too long.

When I put him in 6X's, the pants would be obscene if he weren't still in diapers, but the legs are just the right length.  But that's alright. They match perfectly with all his muscle shirts!

So this week, I'm buying him a whole new wardrobe (again), and breaking out the sewing machine to hem up all his pants.

I guess in the grand scheme of things, a growth spurt (or three) is a good thing, right?

Kicking, Biting and Spitting: What I'm Doing To Combat the Combatant

I've had difficulty the last several months with a new development.  Kicking, biting and spitting.  This has been so much of a struggle, that I've called in behavioral specialists, and DD Services has moved his respite care from 0 hours last year, to 58  hours/month this year (Jake was throwing the mother of all tantrums at the time of his assessment. I'm not sure if that's good, or bad).

This problem has escalated since he started kindergarten, which is a class consisting of seven other kids with developmental disabilities and three para-educators (assistants).  As best as I can tell, Jake is the youngest, and the others range into the 2nd or 3rd grades.

The teacher is new, and highly motivated (thank goodness!), but she is also inexperienced (bless her heart).  I like her. Her heart is in the right place. But there is much trial and error going on in the class.

I've shown up to get Jake for his therapies, and the poor woman is flushed and frazzled.  Once, I came in and the room was annihilated - someone had literally cleared the shelves all over the floors.

Sadly, Jake is beginning to pick up on some of these behaviors and bringing them home.

We contacted a behavioral therapist and had a (sort of) consultation.  However, he wanted the entire allotment of Jacob's DD money $1200 to be used for behavioral services.  Um, I'm sorry. There are BOOKS on behavioral therapy (of which I will be buying - I'll blog about that later, I'm sure). Plus, he approach to dealing with Jacob is to wait his tantrums out, or offer him something that he wants more.

Okay, let me make something clear. I have FOUR children. I am not willing to let Jacob rule my world and dictate when and where I will do things.  I have absolutely no problem taking the time to teach him to behave properly, or what acceptable behavior is, but ALLOWING him to continue with his tantrums, and making the rest of us revolve around him is not acceptable to me. And it does him no favors in the future. It only teaches him that tantrums are acceptable ways of expressing frustration.

So, we've been working with the OT, PT, Speech, and the teacher at school to figure out the best way to work with him.  I suspect that some of this is due to his frustration that he can't communicate his wants and needs properly, and it will go away once he can speak a little better.  Other things are learned from the older kids at school.  And still others are from his innate stubbornness.

For now, I'm doing the following, though I'm sure this will be tweaked as I figure out what works and what doesn't:

1)  Try to spend more quality time with him than I have in the past.  Primarily, this is so he understands that good behavior means he gets lots of attention.  Bad behavior means time outs in his room or on the couch, without the attention he craves.

2) When I'm with him, we try to unplug. From everything.  No cell phones, no TV, no music.  I limit the amount of sensory input he can get.

3) Lots of physical play. Jake seems to respond well to physical activity.  The teachers say he behaves better in school after PT and OT sessions. He starts swim lessons tonight, and we're actively working on getting him to the park and going outside to play.

4) Quiet time. He's beginning to sit still long enough for us to read books. So, I'm encouraging that too.

5) I'm working out. This kid is STRONG!  His behavior isn't going away anytime soon, so I'm taking action to be able to handle him better.  The moment he gets stronger than me, I've lost that battle.

6) Taking breaks (Respite). I'm totally utilizing the respite care.  Luckily, my oldest is 21 and wants to be an Occupational Therapy Assistant, so she'll be the respite care. But we've agreed to let him go over to her house twice a month on the weekends so that our family can have a break. We love Jake to death, but taking care of a child with Ds is hard. And it's important for the other kids to remember what life as a normal kid is like, and to enable us to give them their much-needed attention too.  

My Son Has Low Muscle Tone, But He's Strong as an Ox!

When Jacob was born, I read a bunch of the literature on what to expect.  Most of it depressed me, quite frankly.  I didn't want to know that Jacob had a increased risk of this or that.  I wanted to know what to expect in terms of development, and what virtually every child of Down syndrome had in common.

I quickly discovered that, like typically developing children, those with Down syndrome develop and grow at different rates, have different difficulties, and varying types of cognitive abilities.  However, one attribute, which appears to be across

the board for children who have Down syndrome is their low muscle tone.

Originally, I thought that meant Jacob would be weaker than typically developing children.  BOY was I wrong.  In fact, it was the exact opposite.  How is it that a a child, with an un-correct AVSD heart condition needed THREE nurses to hold him down for IV's?  Then there's the walking.  That happened at 13 months.  Where's the delay in that? And aside from a slight delay to catch up from being immobile the first 3 months of his life, Jake quickly built up steam and now exceeds nearly all physical expectations for kids his age.

And now that Jacob is 6 1/2, I'm forced to begin weight training because he is just about stronger than me.  Scary, huh?

So, low muscle tone does NOT mean weak muscles.  Then what does it mean? For a more detailed explanation, you can go to Wikipedia. They're the most straight forward and comprehensive. Essentially it means hyper-flexibility, and (sometimes) weak muscles, or muscle resistance.  For Jacob, it's TOTALLY hyper-flexibility.

Jacob's preferred position to sleep is folded in half, laying on his legs, occasionally sucking (or biting on his toe nails). Sadly, I don't think I've ever cut his toenails (please don't gag. I've done enough of that for all of us).

On the bus, Jacob wears a harness that has 2 straps for his feet, a vest that goes over his shoulders, and zips in back.  He's managed to slide out of that thing too.

He's slid out of his 5-point harness on his car seat (don't get me started on that one!), out of my arms if he's throwing a tantrum, or wedge himself into a drawer or a tiny cupboard.  I can't tell you how many times I've run through the house frantically calling his name, to find him grinning from ear to ear because he'd successfully hid from me. Sigh.

My boy is Houdini.  He can get out of EVERYTHING. If he were in a straight jacket, he'd find a way.
Luckily, he spends a lot of time in PT and OT, learning to strengthen his joints and his core.  Heaven knows, the rest of his body doesn't need to be any stronger.

Needless to say, this little boy keeps  me, and the rest of our family, on our toes!  Good thing we learned fast that low muscle tone does not equate to weak muscles, or any excuse to treat our child any differently from the rest of the kids in our home.

If anything, Jake's low muscle tone gives him an advantage.  Sometimes it's like the kid has four arms - quite handy when he and his 17-year-old brother are wrestling in the living room.  Or his hands are full, and he needs a little extra leverage with something he's playing with.

Never a dull day with Jacob around.  Never.

Wrist Wraps: The Unexpected Solution to Sensory Issues

So I went through a phase several months back when I was doing a lot of product testing.  Companies would send me their products, I test them out, then I'd blog, Tweet, or Instagram about whatever I was using.

For the most part, most everything was good.  Occasionally, I'd find something so wonderful I'd buy more when I ran out.
One  of those unexpected items were wrist wraps (If you go onto Amazon you can find the for under $10).  If you don't lift weights, you probably don't know what they are. But the concept is simple.  It's a thick elastic band, much like an ace bandage, that wraps around your wrists and Velcros at the end.  It's designed to strengthen your wrists when you're lifting heavy weights.  Since my kids are big into lifting because of sports, I decided to get a pair of wrist wraps.

Lo and behold, little Jacob got a hold of my wraps and LOVES them!  I think it's a sensory thing for him.  He'll put them on and take them off several times a day.  At first he needed my help, but now he can pretty much do it all by himself.  He wraps the elastic around his forearms as tight as he wants it, then runs around the house doing his thing until he decides he's done and takes them off.

I figured after a day or two he'd be tired of the novelty. But it's been nearly 6 months now, and he still pulls them out and wraps his arms.

I'm finding he also likes having the weight of my arm over him while he sleeps, and I've heard them talk about getting him a weighted lap blanked for school to see if that will help settle him down.

I guess the moral of this story is: As a parent of a special needs child, I must always think outside the box.  You never know what your child will find beneficial.

Kindergarten? Already?? Where Has Time Gone?

How can it possibly be a year since my last post?  I know life has been crazy busy around here, but seriously?  I sit here scratching my head wondering where time has flitted off to and I'm ashamed.  So many wonderful stories I could of shared, but I haven't.  So, let me glaze over some of the highlights of the past 12 months. 

Speech:  Jacob is making progress.  Not as quickly as I'd like, of course, but there is progress.  He's beginning to say words like bunny, ball, bubbles, peaches, there is it, this, dad, juice, etc.  He is attempting to say prayers at night, and speech has progressed from learning sounds, to emphasizing words.  Do Jake and I have conversations? No.  But I can see marked improvements since last year, and I'm happy with them.

Physical Therapy:  Jacob has spent months in the pool with Craig, our physical therapist.  Not necessarily because Jake needs to learn how to swim (although he does), but because he is so incredibly strong, that the water is the only place that Jake doesn't feel comfortable. Craig needed Jake to learn to trust him and follow instructions before he could teach him anything. After several months in the pool, Jake has finally graduated to "dry land" and is now learning how to follow instructions rather than flopping on the ground and trying to overpower us.   Jake has calmed considerably in the last several months.  And, although he isn't perfect, I don't have to worry about him running into traffic any more either.  This summer was the first summer I didn't have to follow around behind him in the backyard for fear he'd try to climb the fence and run for the streets.  Thank goodness!  He is finally beginning to calm down and be a boy who follows instructions...about 30% of the time now. 

Our family has been on many adventures to places like the park, Yellowstone, go-carting, and other stuff.  

 We were sure Yellowstone would involve lots of running after Jake, or making him wear some sort of harness or leash, but he was perfectly happy holding someone's hands, or on our shoulders discovering with the rest of us.  It was in-cred-i-ble!!!

Is he perfect? Nope.  There are still days when he flops.  Okay, he flops just about every day.  But it's not all day, every day.  Now it's once or twice a day.

His personality is beginning to blossom too.  He loves to laugh, and play, and discover.  His  brain is always absorbing and learning; processing.  One of the most enlightening things I experienced as a mom was when I let him run free with the hose.  I never knew something so simple as a hose with running water would be so remarkable to Jake, but he played with it for hours.  Not just filling the kiddie tub, but spraying the dirt, and seeing the cause & effect of the water stream, and how changing the flow of water changed what happened to the dirt, or  how hard the water was when it left the hose.  He discovered how to make mud, made puddles in the grass and jumped, and how pouring water into the air conditioning fan made all the water fling back up into the air like rain droplets.

Bubbles were a big thing this year too.  He's mastered the wand, how to adjust this blows to make big bubbles and small bubbles. Catching them on the wand, etc. Bubbles are one of his favorite things to do. Oh, how I love to watch him learn and grow. And to be a little boy.

He LOVES his big brother, and spends as much time as he can with him.  They play a hunting video game and Jake helps him find the Moose, or Nate adds a hunting dog to the game that runs around on screen while they're walking and Jake loves to watch the dog and point at him.

I love watching Nathan signing to Jake during church, or wrestling with him on the living room floor, or even when he falls asleep next to him at bedtime.

These boys make my heart swell!  I am one lucky mama.

Jacob has changed so much over the last year.  Much too much to describe in one blog.  But I can tell you this much:  Kindergarten will be the year of CHANGE.

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.

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.

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.

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 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. :)

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. :)

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!  

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 mousse 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!