My daughter is an amazing artist. It's quite disgusting actually. She also plays Division I sports, was offered scholarships for singing, is a commissioned artist, was ASB president in high school, and has succeeded in nearly everything she's ever put her mind to.
I told you. Disgusting. In an absolutely fabulous sort of way, of course. Who am I to complain? Besides, I'm writing a series of Young Adult novels about her.
She has her very own website called AllredArtistry.com where she displays some of her past art. And, as a favor to me, she agreed to product test some canvases for me.
I received a variety of canvases - 24 to be exact - ranging in size from 3X5" to 8X10".
These canvases are low-profile, which means they lay flat on the table.
I wasn't sure what to think of the canvases when I received them, but she was extremely excited. She wound up making a wall clock for her new apartment, as well as making a wedding gift for a friend out of the remaining pieces. How does this girl come up with her ideas?
I don't know either. But that girl is sure talented!
* I received these canvases for free in exchange for an honest and unbiased review.
My personal blog of life with a child who has Down Syndrome (Trisomy 21) and how he affects our lives. It's an adventure every step of the way!
Monday, September 7, 2015
Thursday, August 13, 2015
Going Back to Work After 20 Years as a Stay-At-Home Mom
Holy smokes! What have I got myself into?!?
After nearly 21 years as a stay-at-home mother, I have decided it's time to go back to college. I'd been toying with the idea off and on for several years, but it never seemed to be the right time. 6 years ago, I was preparing to enter the work force full time. My kids were in school full-time, my online business was BOOMING, and I was putting out feelers for people I could hire as employees. I was ready to take the leap. All the sudden, after 10 years of infertility, I wound up pregnant.
When we started having children the first time around, my husband and I agreed that we would not bring children into this world, if I was going to hire someone to raise them. So, I put my personal aspirations aside, and put all my energy into being the best mother I could be. I'm certainly not the best in the WORLD by any stretch of the imagination. But I was the best I could be.
When I wound up pregnant with our third, I put aside my aspirations again, and prepared for another round of motherhood. Then, 6 months later, BOOM! The pregnancy bomb hit again. We were going to have a fourth. This time, he was special needs. All my attention was needed to care for him, so I sold my online business and got serious about this mothering thing.
It's been nearly 5 years now, and little Jacob has one more year until he's in school full-time. This year he will be gone approximately 4 hours in pre-school and therapies. So, after much discussion with my husband, and exhaustive research, we decided that NOW was the time for me to get my education so that I could re-enter the workforce next year when he starts school.
Luckily, I had one year of college under my belt from before we were married, and I had taken 12 courses (yes, that's 6 per semester). Most of those classes still transfer after all these years (crazy, huh?). So, I am going to major in Addiction Studies (or Sociology, depends on what the counselor says when I talk to her next week).
I am working toward getting my ISAS - Idaho Student of Addiction Studies certificate - which only requires 8 classes (2 quarters of classes for me) and 300 internship hours. Rather than taking the courses and THEN interning, I'm doing this backwards. I have 1 month to get my hours while my oldest is still home from school and I have family to care for Jacob and minimize his shell-shock of me being gone. Then, when Elisha goes off to college, I will also go back through online classes so that I can do my work while the little ones are in bed. My daughter and I will both be Sophomores in college - AT THE SAME TIME!
At the end of my two quarters, I will in essence be just a few classes away from graduating. Until then, I am working 40-50 hour weeks this month, as an intern, learning all the in's and out's of addiction, case management, counseling and what-not. Wish me luck! And pray for me! It's been a really really REALLY long time since I've been in the work force OR in college. And I don't want this new endeavor to affect my family too terribly much. But I think the time is right for me and our family.
Cross your fingers!
...Oh, and by the way, I went to work with two different sized earrings on. Yeah, that's how I roll! :)
My First Day of Work! |
When we started having children the first time around, my husband and I agreed that we would not bring children into this world, if I was going to hire someone to raise them. So, I put my personal aspirations aside, and put all my energy into being the best mother I could be. I'm certainly not the best in the WORLD by any stretch of the imagination. But I was the best I could be.
When I wound up pregnant with our third, I put aside my aspirations again, and prepared for another round of motherhood. Then, 6 months later, BOOM! The pregnancy bomb hit again. We were going to have a fourth. This time, he was special needs. All my attention was needed to care for him, so I sold my online business and got serious about this mothering thing.
It's been nearly 5 years now, and little Jacob has one more year until he's in school full-time. This year he will be gone approximately 4 hours in pre-school and therapies. So, after much discussion with my husband, and exhaustive research, we decided that NOW was the time for me to get my education so that I could re-enter the workforce next year when he starts school.
Luckily, I had one year of college under my belt from before we were married, and I had taken 12 courses (yes, that's 6 per semester). Most of those classes still transfer after all these years (crazy, huh?). So, I am going to major in Addiction Studies (or Sociology, depends on what the counselor says when I talk to her next week).
I am working toward getting my ISAS - Idaho Student of Addiction Studies certificate - which only requires 8 classes (2 quarters of classes for me) and 300 internship hours. Rather than taking the courses and THEN interning, I'm doing this backwards. I have 1 month to get my hours while my oldest is still home from school and I have family to care for Jacob and minimize his shell-shock of me being gone. Then, when Elisha goes off to college, I will also go back through online classes so that I can do my work while the little ones are in bed. My daughter and I will both be Sophomores in college - AT THE SAME TIME!
At the end of my two quarters, I will in essence be just a few classes away from graduating. Until then, I am working 40-50 hour weeks this month, as an intern, learning all the in's and out's of addiction, case management, counseling and what-not. Wish me luck! And pray for me! It's been a really really REALLY long time since I've been in the work force OR in college. And I don't want this new endeavor to affect my family too terribly much. But I think the time is right for me and our family.
Cross your fingers!
...Oh, and by the way, I went to work with two different sized earrings on. Yeah, that's how I roll! :)
Friday, July 24, 2015
A New Twist to Hansel and Gretel
Reading is a passion of mine. It's one I have somehow passed on to most of my children. So when I find a book that includes my other passion, Down syndrome, I sit up and take notice.
Recently, I was given a free children's book, Hansel & Gretel, to review. What makes this book different from all the other Hansel & Gretel Books? Hansel has Down syndrome.
The first time I read the book, it was by myself because I didn't want to expose my children to something inappropriate by accident. At first, I was a little bit sensitive about how Hansel reacted and his family's opinion of him, but then I realized that that was the point: depicting some of the misnomers, or poorly conceived notions much of society has associated with Down syndrome.
Then, toward the end, Hansel became a smart, independent thinker with a big heart who was easy to forgive and see others for who they were. Hmm. Sounds about right.
I examined the illustrations, which were actually felt depictions of each scene. Those were absolutely breathtaking and worth examining again. The details were...wow. You've gotta see it to believe it. Whoever made the felt scenery is amazingly talented.
Finally, I presented the book to my 6-year-old daughter. There was too much wording on the pages to maintain Jacob's attention, but Courtney LOVED it. She sat with me as I read the book, then took it from me and "read" it a second time by herself, checking out all the photos.
As a parent with a child with Down syndrome, I would recommend this book. It's not only entertaining, but it's an interesting twist on a classic story that is sure to open many opportunities for dialogue regarding Ds, and to show the world that Trisomy 21 doesn't equate uselessness.
Camping, Leashes, and Socialization.
Last week our family went on our much-anticipated family reunion trip to Montana. This was more than 9-months in the works and was intended to celebrate the 60th wedding anniversary of my husband's parents.
Extended family drove as much as 20+ hours to be a part of the week-long event which took place in a massive KOA completed with log cabins, RV spaces, and tent sites.
KC and I had discussed, and fretted over how Jacob would react to being in the woods with so much family, away from his structured activities at home, and anything familiar. I'd recently discovered that Jake was a runner, who doesn't look back and won't stop until something stops him, or he runs into a literal wall. The thought of him roaming freely in nature without walls to stop him terrified me.
Despite my apprehension, we made it to Montana and pitched our tents. On day 1, Jacob ran from me twice. And I'm talking down the gravel road, up the hill, and nearly to the bathrooms before I caught up to him and drug him home. It's a good thing there were no cars driving around. Then, it was a matter of, "Jacob, don't touch." "Jacob, give me the knife." "Jacob, don't throw rocks at the cars." "Jacob, don't turn the spigot on full-blast and splash everyone around you." "Jacob, sticks aren't for poking people.".... You get the picture.
The fist few days were exhausting. Then I got sick. I was cramping something fierce, and they seemed to be getting worse with each passing day. I was taking every chance I could get to lay down, hoping the pain would pass and leaving the stresses of Jacob to the rest of the family.
After one particular break, I re-emerged to be informed that Jake had gotten through the electric fence designed to keep the wildlife out of the KOA and one of our family members had to go under it to retrieve him. Wow. Just, Wow.
So, out came the leash. I had already spent the last 4 1/2 years promising myself I wouldn't become that parent. You know, the one who has their kid on a leash in public places like an animal or a pet. I, surely, could find a way to keep Jacob safely within arms reach, right? Nope. There comes a time when a person must accept the fact that she is wrong, and realize that sometimes it is better to keep your child from being electrocuted than worrying about whether or not they look like a dog on a leash.
Surprisingly, I discovered that Jake liked the harness too. He'd bring it to me in the morning and have me put it on him. Sometimes, I'd follow him around, and others I'd let it dangle like a tail trailing behind him. That darned harness was a lifesaver. I'm not going to lie. I'd do it again.
The other epiphany I had while camping was realizing I haven't been socializing Jake as well as I should be. How incredibly easy is it to just say, "Nope. Let's just stay home today." Or to have the older kids stay with Jake and Courtney while I go out and run errands. But keeping Jake locked up in our home - whether intentional or not, isn't doing that little boy and favors. How will he learn social boundaries, how not to touch everything around him, or even how to socialize properly with strangers if he never has opportunities to have those experiences?
We had chances throughout the week to explain to his cousins that he is different and why he is different. It was an opportunity to educate, enlighten, and show them that though he is different, Jake is still very much the same and likes to play just like every other little kid.
In spite of being sick and having to eventually go to the emergency room, I feel as if the trip was a good one. I learned a lot, and Jake (I hope) learned a lot and was able to enjoy the experience with his extended family and loved one. It certainly was an adventure no matter how you look at it!
Extended family drove as much as 20+ hours to be a part of the week-long event which took place in a massive KOA completed with log cabins, RV spaces, and tent sites.
KC and I had discussed, and fretted over how Jacob would react to being in the woods with so much family, away from his structured activities at home, and anything familiar. I'd recently discovered that Jake was a runner, who doesn't look back and won't stop until something stops him, or he runs into a literal wall. The thought of him roaming freely in nature without walls to stop him terrified me.
Despite my apprehension, we made it to Montana and pitched our tents. On day 1, Jacob ran from me twice. And I'm talking down the gravel road, up the hill, and nearly to the bathrooms before I caught up to him and drug him home. It's a good thing there were no cars driving around. Then, it was a matter of, "Jacob, don't touch." "Jacob, give me the knife." "Jacob, don't throw rocks at the cars." "Jacob, don't turn the spigot on full-blast and splash everyone around you." "Jacob, sticks aren't for poking people.".... You get the picture.
The fist few days were exhausting. Then I got sick. I was cramping something fierce, and they seemed to be getting worse with each passing day. I was taking every chance I could get to lay down, hoping the pain would pass and leaving the stresses of Jacob to the rest of the family.
So, out came the leash. I had already spent the last 4 1/2 years promising myself I wouldn't become that parent. You know, the one who has their kid on a leash in public places like an animal or a pet. I, surely, could find a way to keep Jacob safely within arms reach, right? Nope. There comes a time when a person must accept the fact that she is wrong, and realize that sometimes it is better to keep your child from being electrocuted than worrying about whether or not they look like a dog on a leash.
Surprisingly, I discovered that Jake liked the harness too. He'd bring it to me in the morning and have me put it on him. Sometimes, I'd follow him around, and others I'd let it dangle like a tail trailing behind him. That darned harness was a lifesaver. I'm not going to lie. I'd do it again.
The other epiphany I had while camping was realizing I haven't been socializing Jake as well as I should be. How incredibly easy is it to just say, "Nope. Let's just stay home today." Or to have the older kids stay with Jake and Courtney while I go out and run errands. But keeping Jake locked up in our home - whether intentional or not, isn't doing that little boy and favors. How will he learn social boundaries, how not to touch everything around him, or even how to socialize properly with strangers if he never has opportunities to have those experiences?
We had chances throughout the week to explain to his cousins that he is different and why he is different. It was an opportunity to educate, enlighten, and show them that though he is different, Jake is still very much the same and likes to play just like every other little kid.
In spite of being sick and having to eventually go to the emergency room, I feel as if the trip was a good one. I learned a lot, and Jake (I hope) learned a lot and was able to enjoy the experience with his extended family and loved one. It certainly was an adventure no matter how you look at it!
Tuesday, July 14, 2015
Tea Anyone? Spending Quality Time With My Daugher
Tea Anyone?
I'm the kind of person who likes to
show of lots and lots and LOTS of photos of her kids. Yes, I am one
of THOSE moms. Not because I'm bragging that my kid passed
kindergarten, or because they made a 'poopie' in the toiled. Though,
to be fair, I am a mom with a special needs son, so I make no
guarantees. I'm just saying. You've been warned.
I adore my kids. And I find it
hilarious that my younger set (6 and 4) is so similar to my older
set (19 and 15). Courtney is m y 6-year old and she is the
quintessential girlie-girl. If it's pink and sparkles she's game. So
it was no surprise when high-pitched sequels and giggles ensued after
she found out I was testing a pink and flower themed tea set. So, to
torture her giddy little heart, I made her wait until I could take a picture of her with her new toy. Sorry, the picture isn't the best because
she wasn't willing to sit still long enough for me to get good
pictures.
I happened to get this particular teaset for free in exchange for an honest and unbiased opinion.
However, this is not the first time I've had this tea set- and the
first set I paid full price for – and LOVED. So this tea set was a
no-brainer. I knew I'd like it before I got it.
Why do I like this tea set. Several
reasons.
- They are made of sturdy metal. If I stepped on those things because a kiddo left them on the carpet, it wouldn't dent or crush. And it's not the cheap plastic you normally find that fades or cracks if you look at it funny.
- The design is stinking adorable. Hot pink and flowers. How much better does it get for a little girl?
- There's enough for a true party. You get 4 plates (about 4” in size) 4 tea plates, 4 tea cups, and a little teapot complete with a top.
The only think you need to be aware of
is that they are not designed to actually hold liquids. Since
they're assembled using rivets, they aren't water-tight. But that's
OK. Less clean-up work for you when the party is over!
The only thing that would keep me from
giving the Tea set an A+ is the inability to hold actual liquids.
But its report card is a solid A nonetheless. I'd highly recommend
this tea party kit. And I'd certainly buy it again.
Tuesday, June 16, 2015
Clumsy Children = Childproofing....Again
In a matter of ten days, Jacob has wound up with a goose egg on his forehead the size of a golfball, and Courtney has has two major falls. Now she's got bruises all over her arms and face. It looks like she's being abused at home. Her bruises are so bad that I had to e-mail her teacher and let her know what was wrong and ask her to keep an eye out for more clumsiness at school to figure out if she's just clumsy or if I need to have a doctor check her out (inner-ear infection,maybe?). Gah!
I've come to the point where I'm considering baby-proofing my home for my 6-year-old and my 4-year old! OK, there's no way to Jacob-proof a home. But I'm hoping to minimize the damage before Child Services gets called in.
That's how the babyproofing foam edges came into play.
The picture to the left is how it came (with double sided tape) and the picture on the right is the edging on our table (I'm considering adding it to the wrought iron railing, but black on black doesn't make a good picture, does it!)
I was pretty impressed with this stuff because of how impact resistant it was and how easy it was to install. Since it was a soft foam, I knew if Jacob hit it full-speed, he wouldn't end up with another giant goose egg. Plus the tape, meant I wouldn't have to keep re-installing it every time Jake decided to pull it off and use it as a weapon against Courtney (or any other member of the family!) - OK, at least it slowed him down a bit!
Granted, there aren't enough foam edging in the world to compensate for Courtney falling down the stairs again, but if I can prevent even one more bruise from happening, it will be worth it!
Hopefully these drastic measures won't be necessary for long, and both my children will regain their equilibrium soon!
Friday, June 5, 2015
Sleep Apnea Sleep Study for Jake
At Jacob's last check up with the pediatrician, she put in a request that he get a sleep study done because children with Down syndrome have a higher tendency to have issues with sleep apnea.
It took months for us to connect with the doctor, have our preliminary visit, then actually have the sleep study done.
I'd had no idea what to expect from the study, aside from the fact that Jake would be there all night long and they'd be monitoring his sleep patterns somehow.
We showed up at the hospital at 7 p.m. on a Tuesday night and met with the technician. She showed us to a room that looked very much like a hotel room complete with a queen sized bed, a couple night stands, and a chair in the corner. There was a bathroom connected to the room, and a second room where I could sleep if I chose. She pointed out the cameras that would be used to watch Jacob while he sleeps, then showed me all of the cables that would be attached to various parts of his body.
Jake was NOT impressed. From the second she started trying to attach the cables to his body, he began fighting. He'd kick, and scream, and yell, and push, and wiggle--anything he could do to keep them off his body.
We struggled for FOUR hours to get them on him, then to get him to lay down in bed, and to keep him from yanking the cables out of his hair and off his face.
FOUR HOURS. I finally had to physically restrain him with both my arms and legs until he couldn't move, then wait for him to cry himself to sleep. By the time he fell asleep at around 1:00 a.m. both he and I were a sweaty mess.
By morning, the technician verified that yes, he did have sleep apnea, and maybe I should get a sleep study done too. Um, you'd sleep like a brick and snore too if you'd just fought Jacob for four hours. That kid has stamina. I'm just sayin...
I heard nothing for another six weeks, then finally hear from the pediatrician asking if we'd ever had the study. I confirmed that we had and that we were waiting on results and were told it may take a few months to hear anything. She was not impressed, so she made phone calls, and a referral to the ENT.
At his appointment this week, we were told that Jacob had obstructive sleep apnea and another form of apnea that affects his brain waves when he sleeps. He will be getting his tonsils out shortly to help with the apnea since there is no way Jake will sleep with a CPAP machine.
The ENT said that once the tonsils were taken out, they normally do another sleep study. I quickly informed him that there was NO WAY I was going to subject Jake to that study again. Not for a very long time. He agreed when I told him the story and said that instead he'd do a follow-up with him after the surgery to make sure his airways are doing well.
Here's to hoping that will be enough, and we don't find ourselves in another all-night war of the wills!
It took months for us to connect with the doctor, have our preliminary visit, then actually have the sleep study done.
I'd had no idea what to expect from the study, aside from the fact that Jake would be there all night long and they'd be monitoring his sleep patterns somehow.
We showed up at the hospital at 7 p.m. on a Tuesday night and met with the technician. She showed us to a room that looked very much like a hotel room complete with a queen sized bed, a couple night stands, and a chair in the corner. There was a bathroom connected to the room, and a second room where I could sleep if I chose. She pointed out the cameras that would be used to watch Jacob while he sleeps, then showed me all of the cables that would be attached to various parts of his body.
Jake was NOT impressed. From the second she started trying to attach the cables to his body, he began fighting. He'd kick, and scream, and yell, and push, and wiggle--anything he could do to keep them off his body.
We struggled for FOUR hours to get them on him, then to get him to lay down in bed, and to keep him from yanking the cables out of his hair and off his face.
FOUR HOURS. I finally had to physically restrain him with both my arms and legs until he couldn't move, then wait for him to cry himself to sleep. By the time he fell asleep at around 1:00 a.m. both he and I were a sweaty mess.
By morning, the technician verified that yes, he did have sleep apnea, and maybe I should get a sleep study done too. Um, you'd sleep like a brick and snore too if you'd just fought Jacob for four hours. That kid has stamina. I'm just sayin...
I heard nothing for another six weeks, then finally hear from the pediatrician asking if we'd ever had the study. I confirmed that we had and that we were waiting on results and were told it may take a few months to hear anything. She was not impressed, so she made phone calls, and a referral to the ENT.
At his appointment this week, we were told that Jacob had obstructive sleep apnea and another form of apnea that affects his brain waves when he sleeps. He will be getting his tonsils out shortly to help with the apnea since there is no way Jake will sleep with a CPAP machine.
The ENT said that once the tonsils were taken out, they normally do another sleep study. I quickly informed him that there was NO WAY I was going to subject Jake to that study again. Not for a very long time. He agreed when I told him the story and said that instead he'd do a follow-up with him after the surgery to make sure his airways are doing well.
Here's to hoping that will be enough, and we don't find ourselves in another all-night war of the wills!
Thursday, June 4, 2015
To Charge or Not to Charge....My Cell Phone, That is
I'd noticed lately that my Iphone and Jake's Ipad weren't keeping their charge nearly as well as they used to. And my husband had mentioned that his phone was having issues with charging as well. So when I had an opportunity to get a portable charger, I jumped.
I'd been standing in line at Walmart over Christmas when I'd overheard two ladies next to a portable charging display unit about how fantastic the chargers were. It was the first time I'd even heard of the things. Every day I feel a little more antiquated. I feel like I'm totally out of the technology loop now.
Anyway, I'd been mulling their conversation over for months, wondering if the chargers were all the hype. With all of our batteries having issues, and me being 6 months from being able to get a new phone, I figured the portable charger might be an alternative to me having to plug my phone in 3 times per day, or Jacob's Ipad dying in the middle of his therapies at school.
I got a pink Lifeguard mini portable charger in the mail a few weeks ago. I kid you not, I didn't get the thing out of the box before Nathan, my 15-year-old, snatched it from my hands, pulled it from the box, and refused to give it back. It was the last I'd seen of it.
Finally, today I asked him about the pink charger. I mean, c'mon. It's HOT PINK! He can't possibly be using it, right? At least not in public. I was wrong.
Nate told me he takes it to school and, in fact, loaned it to a kid because his phone had died during class. He said the phone was charged to 100% by the end of class and that he has been able to get 2 1/2 - 3 full charges out of Lifeguard before needing to re-charge.
I asked him if he was going to give it back to me, and he just laughed. I guess if me and the little one's are going to use a portable charger, we're going to have to buy one for ourselves.
The moral of my little story?: The Lifeguard portable charger is a GOOD product...IF you can get your teenage son to share!!
Wednesday, May 20, 2015
Jacob - A Little Brother in the Truest Form
I've been updating many of my blogs over the last several weeks, and it's given me an opportunity to walk down memory lane. Some of those memories were filled with laughter. Others with sadness and tears. But the strongest vein of thought I felt throughout the months and years with Jacob thus far has been gratitude that Jacob is in our lives.
Yes, my 4 1/2 year old is stubborn, devious, likes to dump things on the floors...or beds...or behind couches...you get the idea. But he's also a lover, a giggler, a hugger, curious, sweet, devoted, and constantly trying to show love toward me. He's wise beyond his years, and yet impulsive as a one-year-old. And...Jacob is a little brother in the truest form of the term.
Jake is only 18 months younger than Courtney, but only half her size. So, why is it, that every time she walks in the room, he either A) follows her around like a puppy dog B) Tries (and usually succeeds) to tackle her. That little boy LOVES to hear his sister scream and/or squeal. It's like his very existence depends on how loud Courtney yelps.
At times it's frustrating, and other times, I can't help but chuckle. It's one of hundreds of little reminders for me that, although Jake has Down syndrome, he is more like the rest of us than he is different.
Yes, my 4 1/2 year old is stubborn, devious, likes to dump things on the floors...or beds...or behind couches...you get the idea. But he's also a lover, a giggler, a hugger, curious, sweet, devoted, and constantly trying to show love toward me. He's wise beyond his years, and yet impulsive as a one-year-old. And...Jacob is a little brother in the truest form of the term.
Jake is only 18 months younger than Courtney, but only half her size. So, why is it, that every time she walks in the room, he either A) follows her around like a puppy dog B) Tries (and usually succeeds) to tackle her. That little boy LOVES to hear his sister scream and/or squeal. It's like his very existence depends on how loud Courtney yelps.
At times it's frustrating, and other times, I can't help but chuckle. It's one of hundreds of little reminders for me that, although Jake has Down syndrome, he is more like the rest of us than he is different.
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Wednesday, May 13, 2015
Gemiini Update: Jacob's Speech is Progressing
This is my monthly post on Jacob's speech progression using Gemiini.
Admittedly, we haven't been using Gemiini as often as I'd like. Jake's older sister had heart surgery three weeks ago, so our focus was on her for much of April. However, whenever possible, I would sit down with Jake and go over the videos. Plus, they have an app that we've downloaded that Jake can click on without requiring me to log into their system to watch the videos. I've caught him several time with his Ipad watching those videos and making the sounds and signs to the words.
I've seen a lot of progression in Jake these last several weeks. He's progressed from using signs and a series of grunts to babbling with consonants, and even trying to use words. This last week he pointed to an object and said "there!" (which sounded more like 'dehyr', but whose complaining?), and last night he was doing the da-da-da thing. What a leap from absolute silence. 4 1/2 YEARS we've been trying to get Jacob so say SOMETHING, and now it's happening. Is it bad to say there are days I want to shed tears of joy at this development?
This morning we were on again. He only managed to watch for 10 minutes, but he did all the signs, all of the sounds associated with the animals, and was attempting to say the words. He'd either manage to say the beginning or the end, but not the entire word. They're baby steps, but for me they are HUGE. I have hope. And there's nothing better in the world than having hope for your child and his ability to communicate.
Admittedly, we haven't been using Gemiini as often as I'd like. Jake's older sister had heart surgery three weeks ago, so our focus was on her for much of April. However, whenever possible, I would sit down with Jake and go over the videos. Plus, they have an app that we've downloaded that Jake can click on without requiring me to log into their system to watch the videos. I've caught him several time with his Ipad watching those videos and making the sounds and signs to the words.
I've seen a lot of progression in Jake these last several weeks. He's progressed from using signs and a series of grunts to babbling with consonants, and even trying to use words. This last week he pointed to an object and said "there!" (which sounded more like 'dehyr', but whose complaining?), and last night he was doing the da-da-da thing. What a leap from absolute silence. 4 1/2 YEARS we've been trying to get Jacob so say SOMETHING, and now it's happening. Is it bad to say there are days I want to shed tears of joy at this development?
This morning we were on again. He only managed to watch for 10 minutes, but he did all the signs, all of the sounds associated with the animals, and was attempting to say the words. He'd either manage to say the beginning or the end, but not the entire word. They're baby steps, but for me they are HUGE. I have hope. And there's nothing better in the world than having hope for your child and his ability to communicate.
Thursday, May 7, 2015
We have an OFFICIAL logo!
Look at it. Isn't it pretty? My heart flutters and a tear forms in the corner of my eye when I gaze upon the fantastical wonderfulness that is...our official logo. It's been four years in the making. We've talked about DRL, and we've promised that it will actually come to fruition. But today we scream from the rooftops: "We are alive!!" Ok, maybe this is all a bit extreme to some. But for me, it's a pretty big deal.
I've talked about Down Right Living becoming a non-profit organization for so long, but have made no steps to do so. Yeah, part of it is because Jake has had a few issues. Then Elisha and her heart issues. But in spite of it all, I've decided to push DRL to the top of my priority list and earnestly begin fundraising to make it happen. I even have a business/marketing plan (gasp!) I know, right?
Be afraid...be very afraid.
Until then, if you'd like to help us reach our goal, we have a couple options for you.
1) Donate outright through GoFund Me. Donate to Down Right Living. Help us become a non-profit!
2) Buy our T-shirts...or tank tops...or sweatshirts...(you get the picture) from us. You can check out the options here: http://www.cafepress.com/sassysips2?nocache=yes
Every little bit would be appreciated. None of it goes into our pockets. It goes directly into making DRL a non-profit and paying forward to those other families touched by Down Syndrome.
Thursday, April 30, 2015
Adoring Daddy
The last several months have brought about subtle, yet significant changes in Jacob. I don't know if it's because he's actually changing, or if, because of all the things going on with Elisha, I've begun to notice and appreciate the little things in life.
The biggest thing, for me, has been how Jacob has changed from being completely self-involved, to slowly incorporate others into his list of concerns. In the past, Jake would run from activity to activity, with me in his wake trying to keep up.
But now, he tends to want me to be a part of his adventure, searching me out so that he can grab my hand, and pull me with him to discover the flowers growing outside, or to watch his favorite show, or to practice Gemiini together.
The other week, however, it truly hit home as our family went to play tennis for the first time this season. K.C. piled me, Nathan, Courtney, and Jacob in the car and took us to the high school's tennis courts, which (thankfully) have a very high chain link fence with gates that latch closed. This allowed me to not worry quite so much about Jacob and gave him the impression of freedom to run as he chose.
I very much expected him to run through all of the tennis courts, chasing after balls, gleefully playing and exploring by himself. However, this night, he stayed pretty close to his daddy's side.
K.C. offered him a tennis racket, which Jacob wheeled with pride, teetering from side to side as he tried to compensate for the extra weight, and grinning from ear to ear. He'd stand right next to his dad, trying to mimic his stance, looking up occasionally to make sure he had his legs and hands right, then swinging at any oncoming balls within 5 feet of him.
Nathan would toss a ball over the net, and Jacob would grin, run after it, swing-- usually missing, and run after the ball. Once the ball was retrieved, he'd run back to his dad, hand it to him, and 'assume the position', taking great care to mimic KC's stance.
It was absolutely adorable! What a heart-warming experience to see Jacob and KC playing together, and having fun. In a life full of chaos and running to and fro, it's a tender moment, that makes me smile, even now, in retrospect.
Those are the moments worth living for.
The biggest thing, for me, has been how Jacob has changed from being completely self-involved, to slowly incorporate others into his list of concerns. In the past, Jake would run from activity to activity, with me in his wake trying to keep up.
But now, he tends to want me to be a part of his adventure, searching me out so that he can grab my hand, and pull me with him to discover the flowers growing outside, or to watch his favorite show, or to practice Gemiini together.
The other week, however, it truly hit home as our family went to play tennis for the first time this season. K.C. piled me, Nathan, Courtney, and Jacob in the car and took us to the high school's tennis courts, which (thankfully) have a very high chain link fence with gates that latch closed. This allowed me to not worry quite so much about Jacob and gave him the impression of freedom to run as he chose.
I very much expected him to run through all of the tennis courts, chasing after balls, gleefully playing and exploring by himself. However, this night, he stayed pretty close to his daddy's side.
K.C. offered him a tennis racket, which Jacob wheeled with pride, teetering from side to side as he tried to compensate for the extra weight, and grinning from ear to ear. He'd stand right next to his dad, trying to mimic his stance, looking up occasionally to make sure he had his legs and hands right, then swinging at any oncoming balls within 5 feet of him.
Nathan would toss a ball over the net, and Jacob would grin, run after it, swing-- usually missing, and run after the ball. Once the ball was retrieved, he'd run back to his dad, hand it to him, and 'assume the position', taking great care to mimic KC's stance.
It was absolutely adorable! What a heart-warming experience to see Jacob and KC playing together, and having fun. In a life full of chaos and running to and fro, it's a tender moment, that makes me smile, even now, in retrospect.
Those are the moments worth living for.
Thursday, April 23, 2015
PTSD and Elisha's heart surgery. All in the day of a life of the Allreds.
Tuesday at 4:00 pm. (after nearly 6 hours of waiting) I was at Sacred Heart Medical Center in Spokane, Washington entrusting the life of my oldest child to the cardiologist for heart surgery. This was the second child I've had endure heart surgery. I didn't like it any more the second time around than I did the first.
In fact, this entire experience has brought round a pretty good case of PTSD, and an enormous amount of retrospection over Jacob's life during the past 4 years - not to mention many prayers of thanks for Elisha's.
I couldn't help but remember the day I was at the OBGYN and he told me Jake would have Down syndrome and a pretty significant heart defect. He asked me if I wanted to abort. The answer was immediate and adamant. "Absolutely Not!".
As I prepared for Elisha's surgery, I often wondered how many parents have aborted a fetus merely on the basis of a heart defect. Their worry that the child would not have a normal life, that it would be riddled with pain, sickness, or inability to be like the other kids. I know pain was my first thought with Jacob. How much pain would he be in? Could I, as his mother, handle watching my child with an enormous hole in his heart, suffer as a child? Would the operation hurt? Would he survive. After all, it IS his heart. It's not like they're fixing an ingrown toenail. What would his quality of life be?
Those first three months with Jacob were as bad as I had envisioned them to be. He was soooo very sick. He spent nearly every night of his first three months of life in the hospital, and I would sleep with him on my chest so that he could be upright and breathe easier. He was so sick and listless his therapists were afraid to touch him and refused to treat him until his heart was fixed.
What I can tell you though, and I'm sure you've deduced from past and recent posts, is that the moment he had his surgery, a light flicked on and he turned into this crazy-busy fantastic little boy who laughs and giggles until everyone else around him is laughing and giggling. He's smart, and mischievous, and adorable, and stubborn, and everything I could have possibly hoped and dreamed for in a little boy.
Now I look at Elisha, who apparently has apparently spent her entire life with a rather large hole in her heart as well. How the doctors never caught it, I'll never know. The first cardiologist diagnosed her with a large PFO (Patent Foramen Ovale). On a scale of 1 to 5 (5 being the largest), he was pretty sure she had a 4 or 5. And when she bore down (flexed her stomach muscles), there was a massive amount of shunting from the left atrium to the right (upper two chambers), almost as if there was nothing there to hold the flow of the blood back. A second opinion proved that she didn't have a PFO, but an ASD (Atrial Septal Defect), which means the wall of the atriums didn't fully close and there is a permanent hole in her heart that will never (obviously, because she's 19!) close on its own.
How did this hole affect her growing up? Well, she had a few bouts of passing out, and she was constantly tired. She had little or no stamina during sports. But you know what else?
Elisha was also ASB president, All Conference Volleyball, 2-time state champion thrower for track, All-State/All-Northwest choir, went to state 3 times for choir, and is now a Division 1 track athlete. Did the hole in her heart affect her. Yeah. It did. If it didn't we wouldn't have been taking her to the doctors and found it in December. But the things she was able to accomplish in spite of it, are amazing. You can check out ELISHA's webpage here.
I wonder how many families choose to abort their fetuses because of a heart defect and never realize what an amazing opportunity they're missing, and how normal a child's life can be in spite of a congenital heart defect. I sit here and shake my head. What a loss. And how lucky I am to have had faith and know that everything would be alright.
With two children having heart defects, I'm not sure if their connection is genetic or just really really bad luck. But what I do know is that there was a lot to be learned from the eperience. Not only for myself, but Elisha has learned and matured from it as well. It puts life into perspective quickly.
We have several moments to pause and think hard in the last few days. Especially when her heart rate plummeted during the initial IV insertion from 78 beats per minute to 35 and the room went from 1 nurse to 4 in seconds. And again when her doctor came to us after her surger and mentioned that her heart had stopped for four seconds before they'd even begun the procedure. All the sudden even the most invincible person becomes mortal. And it scares you. It definitely scared me. And it prioritized my life quickly.
After much consideration, Elisha and I have decided to start a non-profit called Allred Hearts. It's for families affected by congenital heart defects. If you walk the halls of Sacred Heart, you see entire levels dedicated to people with heart issues. And having two in our family with a CHD (Congenital Heart Defect) we are acutely aware of how it affects a family and how much help and support a family needs during the process. The night before her surgery, Elisha helped me create the logo for Allred Hearts.
Our family has been through it all. Open heart surgery, a baby with surgery, a college student with heart surgery, being denied by insurance, the uncertainty of life with a CHD, and the promise of life after heart surgery. We've felt the pain, the stress, the hope, the love, and revelled in the little moments that such experiences help us to realize and appreciate. We hope to share that with others.
Please, help us to help others. Show your support to Elisha, Jacob, and our new endeavor, by clicking on the logo Elisha created, and helping us to create the non-profit.
Thank you, everyone, for your love, support, prayers, and help over these last few months (for Elisha) and years (for Jacob). We could never have done it without the help of such a great community of friends, family, loved-ones, and KC's work, Avista. It has been the thousands of acts of kindness that have helped us get through so many trials.
Many thanks,
KC, Susan, Elisha, Nathan, Courtney, and Jacob Allred.
In fact, this entire experience has brought round a pretty good case of PTSD, and an enormous amount of retrospection over Jacob's life during the past 4 years - not to mention many prayers of thanks for Elisha's.
I couldn't help but remember the day I was at the OBGYN and he told me Jake would have Down syndrome and a pretty significant heart defect. He asked me if I wanted to abort. The answer was immediate and adamant. "Absolutely Not!".
As I prepared for Elisha's surgery, I often wondered how many parents have aborted a fetus merely on the basis of a heart defect. Their worry that the child would not have a normal life, that it would be riddled with pain, sickness, or inability to be like the other kids. I know pain was my first thought with Jacob. How much pain would he be in? Could I, as his mother, handle watching my child with an enormous hole in his heart, suffer as a child? Would the operation hurt? Would he survive. After all, it IS his heart. It's not like they're fixing an ingrown toenail. What would his quality of life be?
Those first three months with Jacob were as bad as I had envisioned them to be. He was soooo very sick. He spent nearly every night of his first three months of life in the hospital, and I would sleep with him on my chest so that he could be upright and breathe easier. He was so sick and listless his therapists were afraid to touch him and refused to treat him until his heart was fixed.
What I can tell you though, and I'm sure you've deduced from past and recent posts, is that the moment he had his surgery, a light flicked on and he turned into this crazy-busy fantastic little boy who laughs and giggles until everyone else around him is laughing and giggling. He's smart, and mischievous, and adorable, and stubborn, and everything I could have possibly hoped and dreamed for in a little boy.
How did this hole affect her growing up? Well, she had a few bouts of passing out, and she was constantly tired. She had little or no stamina during sports. But you know what else?
Elisha was also ASB president, All Conference Volleyball, 2-time state champion thrower for track, All-State/All-Northwest choir, went to state 3 times for choir, and is now a Division 1 track athlete. Did the hole in her heart affect her. Yeah. It did. If it didn't we wouldn't have been taking her to the doctors and found it in December. But the things she was able to accomplish in spite of it, are amazing. You can check out ELISHA's webpage here.
I wonder how many families choose to abort their fetuses because of a heart defect and never realize what an amazing opportunity they're missing, and how normal a child's life can be in spite of a congenital heart defect. I sit here and shake my head. What a loss. And how lucky I am to have had faith and know that everything would be alright.
With two children having heart defects, I'm not sure if their connection is genetic or just really really bad luck. But what I do know is that there was a lot to be learned from the eperience. Not only for myself, but Elisha has learned and matured from it as well. It puts life into perspective quickly.
We have several moments to pause and think hard in the last few days. Especially when her heart rate plummeted during the initial IV insertion from 78 beats per minute to 35 and the room went from 1 nurse to 4 in seconds. And again when her doctor came to us after her surger and mentioned that her heart had stopped for four seconds before they'd even begun the procedure. All the sudden even the most invincible person becomes mortal. And it scares you. It definitely scared me. And it prioritized my life quickly.
After much consideration, Elisha and I have decided to start a non-profit called Allred Hearts. It's for families affected by congenital heart defects. If you walk the halls of Sacred Heart, you see entire levels dedicated to people with heart issues. And having two in our family with a CHD (Congenital Heart Defect) we are acutely aware of how it affects a family and how much help and support a family needs during the process. The night before her surgery, Elisha helped me create the logo for Allred Hearts.
Our family has been through it all. Open heart surgery, a baby with surgery, a college student with heart surgery, being denied by insurance, the uncertainty of life with a CHD, and the promise of life after heart surgery. We've felt the pain, the stress, the hope, the love, and revelled in the little moments that such experiences help us to realize and appreciate. We hope to share that with others.
Please, help us to help others. Show your support to Elisha, Jacob, and our new endeavor, by clicking on the logo Elisha created, and helping us to create the non-profit.
Thank you, everyone, for your love, support, prayers, and help over these last few months (for Elisha) and years (for Jacob). We could never have done it without the help of such a great community of friends, family, loved-ones, and KC's work, Avista. It has been the thousands of acts of kindness that have helped us get through so many trials.
Many thanks,
KC, Susan, Elisha, Nathan, Courtney, and Jacob Allred.
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