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!!!

So I've Started a Thing...

A few weeks ago, I went to a writer's conference.  It's the third or fourth time I've been there, and this year I was on the conference committee, so I knew what to expect.  Plus, I went with two sisters, so we were excited

A few days prior to the conference, one sister mentioned she'd signed up for a pitch session (to pitch a book she was working on to a publisher or editor), but her book wasn't ready. She'd already paid the money to pitch, and would I like to pitch in her place.

"Uhhh. Sure." I said as my mind raced about a million miles a second.  The person she planned to pitch wasn't in my usual genre (contemporary and speculative YA). This person preferred non-fiction, religious, and sweet romances. 

But I did have a non-fiction story I'd considered writing for the past seven years.  I even had a name picked out and a writing partner who would co-author with me. I'd already gone so far as to submit my first 500 words to a Beginning of Book Contest at the conference. Just for kicks.

Where most novels need to be written and polished before you pitch the book, non-fictions usually require the first three chapters and a proposal.  If someone wished to publish, then you'd write the book to the publisher's specifications.

Could I pitch a theoretical book I hadn't completed, or even written a proposal for? Sure. What could possibly go wrong?

I should have asked: What can go write? (pun intended). 

I sat down for my pitch surprisingly calm for a person who had no idea what she was going to say. My pitch went something similar to this:

From the day I found out my unborn child was going to have Down syndrome, nearly every person who found out apologized and gave me condolences.  My doctor was required to tell me about abortion options. My mother was speechless.  Everyone treated me as if having a child with Down syndrome was some horrible tragedy.

However, I knew having someone with Ds was the gold standard in disabilities.  I knew he'd enrich our lives, and bring joy to our home.  He would be a blessing.  My doctor gave me books, and I bought books.  All of them were the same.  Nearly every story talked of how the parents were shocked and devastated, but then learned to love their child.  I threw the second book I read against a wall and refused to finish it.  It listed all the things that could go wrong with my baby, and nothing that could go right.  Nobody bothered to point out that every child--whether typically developing or having Down syndrome--has a spectrum of abilities.  Every child has risks. 

Now, other countries actively work to completely eradicate Down syndrome from their society through abortion and other means, as if it's some disease or curse.  Drug companies hope to "cure" us of Down syndrome. 

If everyone treats Down syndrome as a trial, a challenge, or an "issue" to be dealt with, of COURSE the general public will treat it with trepidation and fear.  But Down syndrome is none of these. 

Any and all growth requires being uncomfortable - physically, socially, or emotionally.  When you work out, don't your muscles hurt? When you go to school, don't you have to study? When you strive to better your craft, don't you have to learn, fail, and learn some more?

My story will be my declaration that having a child with Down syndrome is not a bad thing. It is something to be celebrated and excited for.  I don't want anyone to offer condolences for having my child.  There is nothing to fear. Nothing to apologize for.  And so so much to be excited about.

I want to write a new book that defines Down syndrome. And that book will be named, "Take your Condolences and Shove it." It will celebrate Down syndrome and all the good having a child with Down syndrome brings to lives, families, and communities.

Needless to say, she wants to see it. All of it.  Not the typical three chapters usually requested.  She wants me to write the whole book and then submit it to her. She doesn't care how long it takes. She will wait.

So, as I write my book, I'll be blogging more often, keeping you updated on where things go with the book.  And I hope to introduce you to my two co-authors (Wahoo! Three moms with three perspectives on raising children with Trisomy 21!).

If you have ideas on things I can include, or comments you'd like to be included in my book, please post them below! I'd love to have more than just three voices telling this story. 

Until next time...

Susan

Starting Second Grade Already?

He's off! Jake just boarded his bus, bound for second grade, and I'm not gonna lie.  I'm doing the happy dance!  Today is the first day in MONTHS that I've had all to myself. I'm resisting the urge to go back to bed.  I have way too much to do to catch up after an entire summer with kids in tow.

This summer has been amazing though.  After an ENTIRE SCHOOL YEAR in which the teacher did nothing.  I kid you not. Nothing.  I'd walk into class and find kids standing on the table, others running around, shelves cleared, and no work being done; Despite countless meetings and discussions with principals and Directors of Special Education, therapists, and everyone I could talk to, Jacob digressed instead of progressed last school year.  There was no inclusion last year.  How could we when he had begun hitting and spitting again? When he was found in the middle of a five-lane road, within feet of an active railroad line, and at a school that borders a highway? I spent most of last year clawing my out of a pit created by a teacher who didn't care about the progress of the kids.

I may have cried when I found out he was getting a new teacher--one he'd had in preschool and is gung-ho about making sure the kiddos have the best education possible.

The second Jacob started Summer break, I went about the business of fixing everything that broke during school.  We went to a developmental neurologist who recommended a book, "1-2-3 Magic" By Dr. Thomas W. Phelan - Because it's 18 months later and we STILL didn't have an ABA provider for Jake. Two days into implementing the book, and we began to see results.  MAJOR results.

He went from flopping and throwing tantrums for thirty minutes at a time, kicking, screaming, spitting, and attempting to bite, to 10 seconds of showing displeasure, then complete compliance.  No drugs (he was diagnoses with ADHD and they wanted to put him on Ritalin). No spankings.  No arguing. No frustration.  He is now manageable. Hallelujah!

He's beginning to talk too.  When he gets made, he'll sign entire sentences to me, which I try not to laugh at. But it's so darn cute to see him scowling as his little hands are gesticulating wildly telling me why he's upset. I love it!  When he speak,s he signs and tries to speak the words at the same time.  Every day he gets a little bit closer to being understandable. And he's gone from saying one syllable of one word, to trying to say two or three words at a time.  It's glorious!

His independence is increasing too.  Last year he wanted me to dress him and make his food. Now he dresses himself, and is beginning to work the microwave to help me fix him simple meals too.  I expect he'll be making his own sandwiches and other foods by the end of the school year.

Plus, there haven't been any elopements in months.  My stress levels are dropping and I'm having opportunities to enjoy my son, rather than just manage him.

Life is good.  Change is good--as long as it's in the right direction.  My little boy is growing up.  Not only physically, but emotionally and cognitively.  I think I'm gonna just sit here on my first day of school and bask in that knowledge for a little while.  Yeah.  Life IS good.

Four Surgeries Summer 2017

The last couple of months have been chaotic. But how is that different from any other day, week, or month we've had in the past 6 1/2 years?

Well, we had four surgeries this past summer.  Don't worry! None of them were life threatening. A few of them we anticipated.  Some we combined so he wouldn't have to be sedated four times. In total, he was put under three times in two months.

Ultimately, this is why I've been MIA for so long.  In addition to therapy three days per week (our normal schedule), we'd been doing doctors visits galore, verifying that Jacob was healthy enough to go under the knife. Then there was the juggling of appointments and getting all four doctors to communicate with one another (that did NOT go well), phone calls from the nurses, insurance, paperwork, pre-ops, post op visits, and recovery time.

Add in that I also had a procedure a week after Jake's last surgery, and my husband had been experiencing some physical issues during this time and discovered he will need a major surgery in December, and I can honestly say we're done with doctors for a while. Sigh. Except somewhere along the line, they forgot to do his annual blood work while he was put under, so I'll need to do that here shortly. And he needs an X-ray to check his spine for an issue that's common among kids with Down syndrome.  This, too, is something we've known about for years. We've tried a couple times to get the x-ray done, but he wiggled and fought too much. Our pediatrician doesn't want him doing any major sports until this has been verified though. And since Jake is nearly seven, I'd like to get him into sports. Lots of them.

But I digress...

We had four surgeries. One on his teeth. One on his ears (he had a perforated ear-drum on one ear, and the T-tube on the other had fallen out). One for a circumcision (he still wasn't potty trained and his stream was only a trickle). And one on his eye (to help with the crossing).

Teeth:  This was an annual thing.  Jake is only just beginning to let us put a toothbrush in his mouth, and usually for only a few seconds.  Which means that, at age 6 1/2, his teeth haven't been brushed. I know. Ick!  There are so many things wrong with this scenario. But, ya know what? We've been through open-heart surgery.  In the grand scheme of things, this is a walk in the park.  No, this is a NAP in the park.

Luckily, he has tough teeth (thank goodness).  He had one small cavity, they cleaned him up good, noted he's lost a couple baby teeth, and said he's looking healthy.  Come back next year.  Yay!!

Ears:  So, Jake never tells me when his ears hurt.  No sign language, rarely any ear itching/tugging, nothing.  If he hurts, he does nothing to indicate the pain.  I saw one itch and boom! I was calling the ENT.  Guess what? Ear infection. And a perforated ear drum. And the t-tube may or may not have come out on the other ear.  Surgery.

That's okay.  This was not our first...or the second...or the third time at this rodeo.  Plus, our ENT is uh-maz-ing!  We set up an appointment, Jake walked in (a week after his teeth), gabbed with the pre-op nurses, grinned, flirted, and walked right back with them when it was time for surgery.  He was a ROCK STAR!


I hung out in the lobby until they were done (about twenty minutes) and then they called me into recovery.  I knew Jake has a hard time waking up after anesthesia, so I expected a bit of time in the room with him.  He did not disappoint.  I think we were back there for a good forty-five minutes before he was awake enough for me to dress him. Not even grumpy. Thank heavens!  He got to ride out in a wheelchair, and we were home to snuggle and relax for the rest of the day.  No pain meds, and no grumpiness.  By the next morning, he was good as new.

Circumcision/Eyes: These procedures were done together.  For both, I was told he'd be sore for a day or two and then be back to normal.  Once we got to the hospital, I was told by the eye doctor there may be a little bit of bloody tears after surgery, but that was normal. He'll be good to go in a day or two.

Same sort of response from the Urologist.  No problem. I got this.

When Jake came out of surgery, he was in PAIN. Not discomfort. PAIN.  He moaned and cried, and insisted on a wet washcloth on his eyes while refusing to let anything near his penis. I'd never seen Jacob panic, but he was panicking if anyone came near his penis. I felt horrible for the little guy.

During the 2-3 hours we waited for him to wake and try to eat, the nurse mumbled about how all the doctors tell their patients the surgery doesn't hurt, but then after they get rolled into recovery, they realize how they'd been mislead.

She informed me past patients say the eye surgery is like having sand thrown in your eyes and not being able to do anything about it. And I'd heard from someone else how their husband had a circumcision as an adult and said it was one of the most painful weeks of his life afterward.  I tried very hard not to take my frustration with the doctors out on the nurses. And, of course, I didn't see the doctors again after I'd seen Jacob.  Besides, what were they going to do? Undo what had already been done? Yeah...nope.

After several hours, we managed to get about 15 goldfish crackers down Jacobs throat, and he drank 1/3 of an apple juice.  We managed to convince him to take a ride to my car in a wheelchair, but he refused to put anything over his penis, so we had to drape a blanket over the handles of the wheelchair and drape it over his knees so that he wasn't flashing the world en route to the car.

I gently sat him down in his car seat, and he drove home, free as a bird, panting. After walking from the car to the house, buck naked from the waist down, he laid down on the couch, happily took some liquid Hydro's, put a washcloth over his eyes, and laid there, stiff as a board.

Jacob didn't put a diaper on for three days.  On the fourth day, KC managed to get one on him while I was at work.  When I came home, I changed him before bed, and he had a panic attack, the pain was still so severe. He had panic attacks for weeks afterward.  He also had a stream that hit the wall now. Yeah, he had to re-learn how to pee. 

Jake's eyes looked like the blood vessels had ruptured for two weeks, and I nearly took him to the emergency room because he had some sort of tissue bulging from the corner of his eye for quite a while. But eventually, it calmed.  Now, more than a month later, his eyes still get red easily, and he is hyper-vigilant about his penis. 

Was it worth it to correct crossed eyes and increase his stream? I'm not entirely sure.  I certainly would have thought much longer and harder about the process if I'd know this would be the result. 

Next time, I won't be nearly as naive.

9 Reasons Why I'm Grateful My Son Has Down Syndrome

I am a member of several Down syndrome support groups. Because of my schedule, I don't get to meet with many other parents in person, so I choose to stay in touch online and offer support as needed via the Internet.

There are a surprising number of parents who find out about their child's Down syndrome diagnosis and then join support groups in a tissy because they are worried about how bad it will be to have a child with Trisomy 21.

Now that Jacob is nearly seven, I like to think I have a bit of experience. So, to all those parents who just found out their child has Down syndrome, let me congratulate you. You've won the lottery! You will now get to raise one of the most amazing children on the planet!!

Why do I think that? Let me give you nine reasons:

1. They love unconditionally. I thank my lucky stars each and every day for Jacob.  He is the kind of person who doesn't care what you look like, smell like, or think like.  He doesn't care if you're young (though he is partial to babies and children smaller than him), old, middle-aged, black, white, tan, green, or purple. He loves you. If you grump. He ignores it (for the most part).  If you grump at him, he gets over it pretty fast and loves you anyway.  Every day he teaches me to look beyond the cover, and see what's inside.  That's where a person's true value lies, and everyone is worth loving.

2. They give more than they take. Yes, children with Down syndrome require extra work, extra patience, and often extra care. But they seem to give back tenfold.  When ever I need to smile. Jacob gives me seven. And then he laughs until I'm giggling right next to him.  If I need a hug, he'll snuggle all day long if I want.  If I need some company, he's happy to tag along wherever I go, regardless of what I'm doing.  If I need love, he will smother me with kisses and adoration.  If I need space, he's happy to give me some of that too. The boy's a giver.

3. They are intuitive to other's needs. I am constantly amazed at how in tune Jacob is to the needs of others around him. Granted, sometimes he still says, "screw you!", but most of the time, he senses our moods and our needs and works extra hard to give them to us.  If I'm sick, that's the day he decides to hang around, watching Netflix while cocooning at my feet. Most days, I'm running after him screaming, "get back here!" If I'm angry and need space, he usually gives it to me. If  need a hug, all the sudden he's in my face cuddling.  He's that way with others - family and strangers alike.  It's interesting to see how many strangers he interacts with and they tell me how badly they needed that time and energy from him.

4.  They teach us to stop and smell the roses. Oh, this one he's taught me six ways, side ways and upside down.  Jake is a quick learner, and he is extremely capable for a child with Ds. But if he doesn't want to learn something, or he doesn't see the value of it, nothing I do or say will make it happen. Instead, I'm forced to move at half a snail's pace, learning to appreciate the blessings I do have, feel the energy of those around us, take time to appreciate the scenery, and literally learn the joys and mysteries of playing with sticks. And I highly recommend it to anyone who is reading this. I'm a person who finds a task or chooses a goal and puts on my blinders, moving a million miles per minute until I achieve it. Jacob has taught me that not all who wander are lost.

5. They teach us that the opinions of others do not matter. On those rare occasions when someone is mean or cruel based off of Jacob's disability, or if they say something out of ignorance, it is easy to become offended, hurt or angry.  Those are the moments when I observe Jacob and realize, he doesn't really care what others think of him. He's on this earth to love and enrich those around him.  If someone wants to be his friend, then great! Join the masses.  If not, no worries.  Haters are gonna hate and he's not concerned with their opinions.

6. They teach us what is truly important in life. Before Jake was born, I used to think that having one's health was the most important thing.  If we had nothing else, then we would be fine. Then I had Jacob. And he was NOT healthy.  I spent many nights in the hospital gazing at my sleeping son with mottled skin, and labored breathes, wondering what was truly important.  If not health, then what? Then it occurred to me that the truly important things are not things. They're love and relationships, not matter how fleeting.  Money runs dry, health deteriorates, friends move on, family can be conditional.  But love conquers all, and healthy relationships will help a person survive virtually anything.

7. They teach us to never give up. My child is not a quitter. Yeah, it may take him longer to learn something. It may not. But when he puts his mind to it, hell itself won't keep him from achieving his task. Fall down seven times, get up eight? Psht. Amateurs. Fall down 57 times, get up 58.

8. They help us learn to serve others. One of the hardest things I learned to do while Jake was in the hospital was to accept help. I'm the sort of person who can plan a seven course meal with the mayor, fix your sprinkler system, sew a dress, and build you a website. With nine siblings, our parents taught us to do just about everything. And if we didn't know how, by golly open up a book and learn!  So when I was no longer able to do everything, I had to ask for (and accept) help from others.  For a very long time.  I'm talking years.  But this experience helped me learn what it feels like to ask for help, receive help, and how important it is to offer and serve others with the right attitude. Oh what a difference is makes to walk a mile in another's shoes.

9. They are unfiltered. Jacob's inability to filter his reactions is one of my favorite things about him. I always know where I stand with him. Always.  If he's upset at me, I know it. If he's happy. I'll get the biggest grin on the planet. If he's feeling playful, be prepared for lots and lots of zerberts. If he's said, he'll let me know.  I don't have to second guess, or interpret him. For a non-verbal child, Jacob is incredibly expressive.

After seven years, heart surgeries, countless medical procedures, and all the issues we've had with speech, etc. I still wouldn't trade my Jacob for anything in the world.  If I was told before he was born what his childhood would be like, I still would have chosen to keep him. Because, from beginning to end, Jacob has been one of our greatest blessings.

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.