It's that time again - IEP Review! How is Jacob's Progress?

The last day of school before Spring Break, it was time to meet with all of Jacob's Therapists to go over his latest progression.

I'd just finished Courtney's parent-teacher conference, which took a whopping ten minutes, so I figured Jake's might take about twenty.  I left the building an hour later.  Whoa.  How do I forget how in depth these things are?

In their defense, most of the stuff I either already knew, because I was dealing with it at home, or it was positive.  There's just a whole lot of ground to cover when you need to review Jake's progress with four people instead of one.

For occupational therapy, they discussed how he's learning to button things.  I politely informed her that this was a skill I would NOT be encouraging at home, because Jake's inability to unbutton his shirts are the only reason why he is clothed AT ALL at home.  They laughed.  I did too. But I was serious.  That kid is like Houdini with his clothes.  Shoes off on the bus, pants off the minute he gets inside the door, and if I'm stupid enough to put on a T-shirt, that thing is off in 5 minutes or less.  Then I spend the next 5 minutes running after a seriously FAST 4-year-old boy as his laughter echoes off the stairwell while he escapes my reach.

Jake's occupational therapy is working! Look at that circle!

Next, we talked about how Jake has gotten pretty doggoned good at drawing circles, but they're still working on the cross shape.  I agreed.  I informed the ladies that you know you're a parent with a special needs child when you look at the walls ready to scream, but stop when you see a perfect circle drawn on your wall in sharpie and marvel at how beautiful it is (thank goodness it was in the laundry room!).

The physical therapist told me how Jake is getting better at following directions.  When he first started with them, they'd go into the gym for PE and he'd stare off at the walls marveling at the giant mascots painted on the walls.  Now he will sit, participate, and pay attention.  I agreed.

 Picture courtesty of  Geri @ EACAP

Jake's ability to follow instruction (better, but not perfect) is the one aspect of his development I'd noticed the most in the past several months.  When we started at the school, we were expected to wait outside by the street for the bus to arrive, which wound up being 5-10 minutes of me either grabbing him to keep Jake from running into oncoming traffic, or holding his flailing body because he wanted to RUN!  Now, he and I will stand in the driveway and play.  He knows that the road is off limits and that he needs to stay on the driveway until the bus stops and the doors open.  It makes the bus portion of school so much easier on me now that he can follow instructions and knows some basic rules.

Picture courtesy of Geri @ EACAP

Speech therapy was the most entertaining, though.  It seems that Jake likes to pick his favorites and his least favorites.  With his least favorites, I swear he knowingly and willingly makes their lives miserable all day, every day.  At Children FIRST, it was poor Shawn, Jake's Physical Therapist.  I adored her, but for some reason, Jake was stubborn as stubborn can be.  She would often talk about Jake's Downsitude (Down syndrome attitude).  And it is TRUE.  That boy is stubborn beyond belief.  I know ultimately that stubbornness will enable him to persevere as an adult.  As a child, it's annoying as HECK.    Back to the story....Jake's speech therapist is his new focus of his "Downsitude".  He won't enunciate anything for her, or even make a sound.  I tell her about what he's doing at home, and her eyes get wide.  "He's not doing that here."  Figures.  Jake can be such a goober sometimes.

Picture courtesty of Geri @ EACAP

And, just to make his point, as we were leaving his meeting, I asked him to say "bye" to the ladies, so he turned around, waved his hand and said, "bye-bye", which was met with several squeals from the ladies as he walked out the hall and out the door to celebrate a 1-week spring vacation from school. :)

2 Year Anniversary! How Time Flies

I nearly fell out of my chair a couple weeks ago when my 17-year-old posted on Facebook that it was Jacob's 2-year anniversary for his heart surgery.

Had it already been 2 years?  Really?  I feels like it was just a few months ago. But then I began watching my little boy and all he can do, and realize that yes, indeed, our little boy is growing up!

Jacob is now 2 years, 4 months and 3 days old, but whose counting?

Aside from his heart surgery 2 years ago, he has only had two surgeries - twice putting tubes in his ears, one of those included removing his adenoids.  We've been pretty doggoned lucky with our little boy considering all the things that CAN go wrong, but haven't. 

After 2 solid months of crying, he finally took to his on-site therapies and is now pushing me out the door so he can play with his 'girlfriend'.  I'm told they spend much of their time giving each other hugs and playing with one another whenever the opportunity arises.

After months of agonizing about whether or not Jacob was going to communicate with us in ANY way, he has finally found the need to communicate via sign language about a month ago.  He now knows 12 signs and is FINALLY beginning to babble a little bit. 

Our physical therapist claims that he is lagging physically in things like throwing a ball, playing catch and walking backward.  Jake just looks at me and smiles because we both know he's an expert at basketball, soccer, and throwing tennis balls at his big brother's eye.  Likewise, if he finds my cellphone laying around, he's able to grab the phone, run backwards at break-neck speed to make sure I'm not following, then turn mid-stride to sprint forward to safety with phone in hand, giggling all the way in his mischievous little voice.  Yeah.  We're not too concerned about this one.

Don't let those big brown eyes fool you!  He's a crafty little one!!!  Stay tuned for new Jacob stories.  The little rugrat is on the loose - and giggling every step of the way!!

Love,

The Allreds

Leaps and Bounds

People often ask me if I ever sleep.  And, quite frankly, I don't much.  Partly out of habit from the 10+ years I used to work nights running my online business. And partly because I've found that I can get so much more accomplished when the rest of the world is asleep and not distracting me from my long list of things to do. 

As the world quietly sleeps, I've been able to revel in the blessed silence of my home and reflect upon the many things that has occurred in it since my last post in July. Wow! What a busy life we've led!

In July, at 8 1/2 months, Jacob was rolling.  Soon afterward, his physical therapist told us we needed to buy him a toy that he could play with sitting up, so we chose the toy shown below: 

Little did we know what an impact this toy, and it's annoying little dancing teddy bear on top would have on Jacob's development. He fell in LOVE with his toy.  All of the sudden, we began to see progress in Jake so substantial, that the physical therapist would be taken aback.  One week he was rolling around, the next week he was frog-hopping, and doing one or two army crawls on his belly.

Soon, he was up on all-fours grabbing for that dumb dancing teddy bear.  Then, he'd crawl 1 or 2 steps to get better positioning, and before we knew it, he was sitting upright for minutes at a time...

crawling from object to object exploring every square inch of our home and everything in it.  Then he toyed with the idea of bear crawling - on his hands and feet, and was crawling the entire length of the house...FAST!!

Out came the high chairs because his back was finally strong enough for him to sit upright for several minutes at a time.  Out came the stair gates because he discovered the stairs...a couple of times.  Up went anything and everything that could possibly be thought of as small enough to fit in his mouth, etc.  Because if he could grab it, it was going in his mouth!

In spite of the fact that he still had no teeth, we began feeding him solids - and he LOVED it!!!  He'd just gnaw to his heart's contents on anything he could get his hands on. 

Jacob discovered that he needn't just let life pass him by.  He decided that he was going to grab that bull by its horns and ride it into submission!!!  He literally wakes up around 6:30 in the morning and go go go's constantly all day long, stopping just long enough for one or two 20 minute power-naps along the way.  Every other minute of the day, he explores, follows his big sister, Courtney (she fears him! - she runs screaming in the other direction whenever he gets close - I think he secretly likes this), and constantly continues to test the boundaries of his abilities.  Crawl faster, sit longer, and even climbing upward and the start of furniture walking. 

The physical therapist swears that she's never seen a child with Downs start walking before 17 months of age.  At this rate, we estimate he'll be about 14 months when he takes his first steps. 

But until then, we have speech therapy which will begin here in the next few weeks, and we just sit back and watch Jacob embrace life and all it holds for him. 

His infectious smile seems to draw everyone to him - even strangers. 

Tonight we went to a Gonzaga vs. BYU volleyball game and he caught the attention of one of the Gonzaga basketball players.  We spoke for a moment as he goo'd and gaa'd with Jacob and talked of how he missed his own niece on Oklahoma. And as the game ended, another stranger passed us by and told us how adorable he was and so much fun to watch.  This seems to be the norm every time we go out into public with Jacob.

Of course, Jacob is no fool.  When the smiles do not help him get his way, he has mastered his puppy-dog sad face which almost always gets him what he wants.  He IS the baby of the family, you know!

But right now, we are just happy to see him happy, healthy, and progressing like crazy! Including the fact that he FINALLY cut his first tooth tonight!!  Thank heaven for life's small miracles!  All is right in my world today !

So It Begins...

Here it is....4:13 in the morning and I can't sleep. I fell asleep around 10 PM and have been dreaming of Downs Syndrome babies all night long. I guess that's what happens when you begin to eat, breathe, sleep, and think Downs Syndrome in anticipation of the newest addition to your family mere weeks away.

Looking back, I should have known. I've basically spent most of my adult life preparing for "Allred Baby #4" (we still haven't picked out a name, but I'm leaning towards Jacob Andrew).
I began taking notice of developmentally challenged individuals in high school when I was working on my Young Women's in Excellence Medallion. As one of my service projects I decided to volunteer as a Teacher's Aid for the Disabled. One period of school, I'd go to the gym and we'd do P.E. (i.e. physical therapy in the form of games,etc) with a class of developmentally disabled students. I absolutely fell in LOVE with them! What great personalities they had - so genuinely happy and sweet, and funny. I started going to get over my (knowingly) unwarranted fear of the disabled. And the experience wound up sending me down new directions as I got older.

Fast forward another year or two and I was in college. My major? Actually a double major: Education K-12 & Special Education. I wanted to be a Special Education Teacher! Unfortunately, I didn't get very far into my education before I found the love of my life, got married, quit college, moved to Spokane, and started a family of our own. But never fear! I still found ways to incorporate the disabled into our lives.

Soon after Elisha (our first child, a daughter) was born, we moved to Lewiston, ID and began managing an apartment complex that was designated for persons with disabilities. We spent 11 years of our lives, watching over and helping a wide range of individuals with varying types of disabilities as they tried to embark on a life of independence in their own apartments. It had its ups and downs. Our children (we had another child, Nathan, while at the apartments) were exposed to it all, and grew up with none of the pre-dispositions I did, and gaining an appreciation for those with disabilities. Then, we moved back to Spokane for KC's job, into a life of 'normalcy'.

Soon after moving back to Spokane, I discovered I was pregnant again - no small feat considering Elisha was now 13, Nathan was 9, and I'd had 3 other miscarriages. I thought we were done, but Heavenly Father had other plans for us! We soon discovered, long before she was born, that Courtney was going to be a little spitfire! All that kicking!!!!! I thought she was going to break bones!

Fast forward a few more months, and I began having dreams. Nothing too remarkable. It’s just that I kept dreaming that we were a family with a Downs Syndrome Child. I didn't think anything of it. They were just dreams. Nothing more. Courtney was a fluke - a miracle and we probably weren't going to be able to have any more children any way. I had a total of about 4 dreams. Again, I thought nothing of it, said nothing to anyone, and went about my business. By the time Courtney was 8 months old, I discovered I was pregnant yet AGAIN. And I was none too happy about it either! I'd already had 3 children. All of which I loved and adored, but I have never considered myself the maternal type. I didn't WANT any more children. Apparently, God has a sense of humor.

This fourth pregnancy has been a bit of a trial. From the beginning, though things have been relatively unremarkable, I kept having this nagging feeling that this child was going to be born with a disability. Nothing really jumped out at me. I just knew that this pregnancy was going to be different. So I calmly waited to hear the news, silently hoping that I was just letting my irrational fears get the best of me.

I waited through the first ultrasound and was told that our baby was perfectly normal. (Phew! sigh of relief) We went to the 2nd ultrasound at 20 weeks and discovered we were having boy who was apparently VERY active! Aside from the face and the kidneys, the Dr. gave us a clean bill of health, but he asked us to come in a month later to check on the face and kidneys because our baby had been too active and wouldn't sit still long enough for them to take pictures of them. Just a minor precaution. "I'm sure there's nothing wrong. We just want to double check". (Whew! Another bullet dodged! We got another clean bill of health!). I came back the next month and sat down with the ultrasound tech and we began to chat as she discovered, once again, that our baby was a mover and a shaker. He just wouldn't sit still. She finally got a picture of his kidneys, but never could get his face. Soon, she zeroed in on his heart and began to get quiet. I asked a few questions, and she tried to point out the four chambers of his heart, but all I could see were three!! OK, I'm no expert, but when they say 4 chambers, there should actually BE 4 chambers. She quietly spent 30 minutes taking pictures of the heart at various angles and I knew that this was it. This was the problem I'd been holding my breath for. The fear and doubt slowly crept in as I tried to talk myself out of thinking the worst. Maybe I was just being overly sensitive. Nothing was wrong, right?

I had my next Dr. Appointment immediately after the ultrasound. I went in, waited for the Dr. and he came in a little less chipper than I was used to. I LOVE my doctor. I fell in love with him on our very first visit when I came in to confirm that I was pregnant with Courtney. I could tell immediately that he would be a good doctor for our family. And that's saying a LOT considering I'd been through every OBGYN in the Lewiston Valley before I finally settled on a fertility specialist who didn't even do deliveries. When it comes to doctors I DO NOT SETTLE. Dr. Zweisler, I could tell, was a good doctor who knew his stuff and had the same values me and my family had - he held the same value on life that we did and I knew, that if the crap ever hit the fan, me and my baby would be in good hands. I just never thought I'd actually have to TEST him on that fact!

Dr. Zwiesler came in and immediately sat down. I could tell something was not right. He cut to the chase. "So, we found a hole in the baby's heart. A big hole". It all became so surreal. He went on to tell me that he wanted to learn more about it and was going to send me to a cardiologist to do another ultrasound so we would know exactly what we were dealing with. I was informed that hearts defect like our baby's was consistent with babies with Downs Syndrome. There was a good chance that my baby had Downs. By this time I was in tears. How can you not cry? A heart defect!

Dr. Zwiesler was kind enough to give me as much information as I could digest at the time, gave me several tissues, and tried his best to comfort me. All this time, I wasn't so concerned with the Downs Syndrome as I was about the pain that my soon-to-be brand new baby would be in from his heart defect. No one wants to know that their baby is sick or going to be in pain. Especially an infant. He scheduled my necessary appointments with the specialists, and I tried to compose myself. There was no need to wonder if my baby actually had Downs. I knew it in my heart. I'd known it all along. The only thing these tests were going to do was definitively confirm what I already knew to be. I dried my tears, tried to convince my doctor that I was going to be OK, and found my way back to my car to drive home.

I called my husband, left a message for him, drove home, and waited for him to call. How I got home from that Dr.'s appointment, I'll never know. Between the shock and the tears, it was one of life's little miracles. As soon as I got home, my children knew something was not right by the look on my face, and I broke the news to them. Elisha immediately began to cry and Nathan just sat there in shock. What could we do? Nothing really. Just sit and digest what little we knew.

I spent the rest of the day alternating between tears and exhaustion. I called several family members, broke to news to K.C. who sat there in shock, and cried some more. Finally, just after dinnertime, I had KC give me a blessing. During that blessing I had the strongest sense of peace pass over me and I had that moment of clarity I needed to realize that everything was going to be OK.

I could kick and scream and become completely useless to everyone around me, or I can realize that what's done is done. I can't fix it. I can't make it go away. I'm on the ride, whether I want to be or not. I might as well make the best of it and enjoy the ride as much as I could. And I knew that regardless of what happened, it would ultimately be a ride worth riding.

I'd like to say that those were the last tears I cried, but they aren't.  But the peace of mind is there.  And the knowledge that whatever happens, KC and I will be in it together.  So, it begins.......our life filled with ups and Downs (Syndrome)...