Ok, I'm having one of 'those' days. Getting emotional at the drop of a dime. Otherwise known as "hormonal." And no, I'm not pregnant. Regardless, I think I know what's happening.
God is softening my heart.
I'm not saying I was a meanie before though! And I hope none of you would say that either. (Watch it now, I know where most of you live.) But lately, I think because I've been spending more time with him on a daily and consistent basis, my heart is more tender. Here is an example. This morning, I watched this video. (Caution: only watch this if you are alone and don't mind having to reapply your mascara.) Definetly cried.
Then, my friend Danni sent me over to this website. (Another word of warning: Tissues.)
Thanks alot, Danni.
So today, my heart is going out to those who have suffered loss. And knowing that it could happen anytime to any of us has caused my heart to grow in love for my own family and friends.
Ok, there I go again. But seriously you guys, go to those websites and pray for the people you see there.
Back to normal life for me!
Monday, January 31, 2011
Sunday, January 30, 2011
Saturday, January 29, 2011
Friday, January 28, 2011
5 Things I Love Friday
1. Coffee.
Ever since having Haven, I drink 2 cups a day and I LOVE it. And it's not just any ol' cuppajoe. Joel roasts his own coffee and lets me drink it too. So yummy. Don't think I can ever go back to the cheap stuff.
2. Netflix. My new best friend. Kids with cabin fever + Super Why = happy parents.
3. My husband. The love of my life. He has stood with me and by me through things I thought I couldn't handle. He doesn't make fun of me (very much) when I wear my retainer and can't say my "s". His love and passion to be a better husband, father and friend astounds me. I really heart him.
4. Craft blogs. Ridiculously obsessed. And what I wouldn't give to have a little craft room like this someday...
5. This lady. Celebrated her 30th birthday yesturday. So glad to have known her and to have walked with her through life this past 8 years.
Ever since having Haven, I drink 2 cups a day and I LOVE it. And it's not just any ol' cuppajoe. Joel roasts his own coffee and lets me drink it too. So yummy. Don't think I can ever go back to the cheap stuff.
2. Netflix. My new best friend. Kids with cabin fever + Super Why = happy parents.
3. My husband. The love of my life. He has stood with me and by me through things I thought I couldn't handle. He doesn't make fun of me (very much) when I wear my retainer and can't say my "s". His love and passion to be a better husband, father and friend astounds me. I really heart him.
4. Craft blogs. Ridiculously obsessed. And what I wouldn't give to have a little craft room like this someday...
5. This lady. Celebrated her 30th birthday yesturday. So glad to have known her and to have walked with her through life this past 8 years.
Wednesday, January 26, 2011
Tuesday, January 25, 2011
for today...
Outside my window...
I am thinking... that i SO love Tuesdays and Thursdays. Ro has therapy and Ash has preschool, so I spend most of the morning with just Bell. We read books, play with toys, and snuggle while we watch Elmo's World. Such a sweet, quiet time. I love quiet.
I am thankful for... a God who never fails. He has NEVER failed. Do you believe that? Sometimes I go down the wrong road in my mind and start feeling like He doesn't know what He's doing, but He does and He has NEVER failed at anything. Anything!
From the learning rooms... Ro is getting ready to start visiting Ash's preschool to prepare him for Kindergarten in the fall!! Ash is learning all sorts of songs and memory verses, and loves to tell us what colors everything is.
From the kitchen... ok we all know I don't cook much, but IN the kitchen we are going to get a new floor soon! Yeah yeah, I always talk about the changes in my kitchen but it's because the floors are currently NASTAY. Look.
that's a blue marbled-looking effect with divets and paint and scratches EVERYWHERE. from circa 1950. |
This is what the new flooring is:
i know it's a lame photo, but you get the idea |
I am wearing... some comfy clothes and my slippers. These old houses get so cold in the winter. And my kids refuse to wear socks. Oy! But check out my sweet bluetooth phone thingy Joel got me for Christmas. Used it for the first time this morning and it was awesome! Try not to be jealous of how good I look.
I am creating... just finished this bag for my Grandma. What do you think, Grams??
and have started this one...
made with some fancy shmancy designer fabric. Will be up in the shop soon! |
I am going... to enjoy a quiet afternoon with a cup of coffee, Shawn Spencer and Burton Guster (anyone?), and possibly even sew a little bit while the kiddos nap.
I am reading... my new devotional book from my friend Trish.
Out of the Spin Cycle, by Jen Hatmaker. HIGHLY recommend for any mom. Funny, real, and totally applicable to motherhood! I LOL on a regular basis while reading this, and I remember it for the rest of the day. They're nice and short entries, but clear and concise and pretty much hilarious too. I don't know how she does it, but I think I could read this one over and over.
I am hoping... to get back into the sewing groove soon. I've been kind of slacking off, but I'd love for the excitement of creating things to return. Right now I'm mostly just sewing because I have to. Any crafters out there know what I mean?
I am hearing... sweet, beautiful quietness.
Around the house... there are MegaBlocks everywhere, toys in pieces, and books scattered as far as the kitchen floor. Laundry on the dining room table, and food in the kitchen sink (which Joel hates. sorry honey.) Give me a break though, 4 sicks kids in one weekend is kinda rough.
One of my favorite things... is Macadamia nut cookies.
A few plans for the rest of the week: nothing noteworthy!
Here is picture for thought I am sharing...
Friday, January 21, 2011
5 Things I Love Friday
1. Asher's new haircut. First real cut of his life.
2. This show. Seriously my favorite ever. I could watch every episode over and over again and not tire of it!
3. This boy.
4. My new stash of fabric yo-yos. Now what to put them on...
5. Joel noticed the string was too short on the cieling light in the kitchen. I had get to get on my tip toes to reach it. So he made it Jenn-length. And left a note. :)
2. This show. Seriously my favorite ever. I could watch every episode over and over again and not tire of it!
3. This boy.
4. My new stash of fabric yo-yos. Now what to put them on...
5. Joel noticed the string was too short on the cieling light in the kitchen. I had get to get on my tip toes to reach it. So he made it Jenn-length. And left a note. :)
It says "Whenever I do things like this string, I'm thinking about YOU. I love you Jenn." |
Thursday, January 20, 2011
My Creative Space
When one of my kids is sick, it's harder for me than most things. Not because it's inconvenient (although I could totally do without smelling like vomit and consequently bleach all day), but because I want to make them feel better so badly. It pains my heart to see them hurting. I'm sure all you moms can agree. My little Bell was up all night long throwing up. I think she ate some bad chicken. Either that, or she's got this stupid bug that's going around. Joel tended to her every time she puked. I don't deserve that wonderful man.
On that note, I'm tired today so this blog post will be sub-par. I dont even know if that's the right word for it. Sub-par? Less than par? Not very good? Craptastic? You get it.
For "My Creative Space" this week, I'm posting this not-so-creative-spacey entry. The only crafty thing I've done lately is post ONE thing in my shop. Yep, one. And I didn't even make it. But it's super cute and worth mentioning here.
I may post another bit of gorgeous vintage fabric today. We shall see. Depends on if I can manage to somehow change out of my pajamas and into some regular clothes for the first time in 3 days. I don't think I should be allowed to do anything else until that happens.
You gotta see how beautiful it is outside right now.
This picture was taken quite early in the quiet of the morning. Soon after, the snow started falling. The flakes were so big and beautiful. That's my favorite kind. Living here in the arctic tundra isn't so bad when it's beautiful like this most of the winter.
Hope you all have a great day! I know I will be spending most of it cuddling with a tired little 2 year old princess, and I don't mind one bit.
**Head on over to Kootoyoo to check out tons more creative spaces**
On that note, I'm tired today so this blog post will be sub-par. I dont even know if that's the right word for it. Sub-par? Less than par? Not very good? Craptastic? You get it.
For "My Creative Space" this week, I'm posting this not-so-creative-spacey entry. The only crafty thing I've done lately is post ONE thing in my shop. Yep, one. And I didn't even make it. But it's super cute and worth mentioning here.
Vintage Raggedy Anne and Andy cafe curtain |
How incredibly cute is that?! |
You gotta see how beautiful it is outside right now.
This picture was taken quite early in the quiet of the morning. Soon after, the snow started falling. The flakes were so big and beautiful. That's my favorite kind. Living here in the arctic tundra isn't so bad when it's beautiful like this most of the winter.
Hope you all have a great day! I know I will be spending most of it cuddling with a tired little 2 year old princess, and I don't mind one bit.
**Head on over to Kootoyoo to check out tons more creative spaces**
Wednesday, January 19, 2011
Monday, January 17, 2011
Friday, January 14, 2011
The Final Part of How it all started with not AS many words
We got to NY and realized that, unlike most of the rest of the continental US, ABA is not the standard therapy for autism. Nothing is, actually, except what is offered by the public school system. NY actually is looked on by the other states as providing the BEST services from the school districts for special needs kids, so I am certainly not complaining. We have very much appreciated the speech therapy and special education services that the school district has given Rowan over the past year. But it was very difficult to find anybody who knew anything about ABA when we got here. It took a lot of searching and phone calls. I googled "Autism Oswego NY" and everything similar, and then emailed or called every single person that had anything to do with autism in the area. Yeah. Obsessed much? Unashamedly. And it paid off.
And here's one from right after one of his first therapy sessions:
"Ro came back up and could name all of his colors, numbers, animals, and all their sounds. He's never done any of that before! We are thrilled!"
Since then, he has learned an incredible amount of content, responds to his name immediately, makes excellent eye contact, and enjoys social interaction much more. I could talk for a very long time about the benefits that this kind of one-on-one therapy has shown for Ro, but just take my word when I say that people who see him now for the first time in a few years can't even believe it's the same boy!
Now, all of these positive changes cannot be exclusively credited to the ABA therapy. I've written about this before, so you can look back and read about the MB12 shots we had started giving him. It was a tiny insulin needle with a few drops of methylcobalamin, which has been shown extensively in studies to improve many things like sleep, mood, attention, etc. We did this for about a year and we believe it really helped! We decided to stop them to see if it made a difference, and since we didn't notice anything after doing that, we took it as a sign that that particular treatment had run its course. So we continued to focus on the yeast issue. Since the meds didn't seem to work well, we were kind of at a loss. What now, Lord? Where do we go from here? There has to be a way to fix this little boy's body! We prayed and continued to believe that God would show us what to do next. So we waited. We just stuck with the gluten free, dairy free, sugar free diet and gave him his mega vitamins. For months we waited. We didn't see any improvement in his gut, as evidenced by his nasty poops. Man, they were so nasty.
Then one day, many months later, a friend contacted me about Essential Oils. Honestly, I always thought they were for hippies or those of the middle eastern religions. I hadn't researched them much, but what she told me about them was really appealing, and she had tons of testimonies about how they helped her and many she knew. If you dont know about them, go here and read a little. Really interesting. The original medicine, way before pharmaceuticals. Anyway, after talking with her, and another person, and then another, about the major benefits they've seen, Joel and I prayed and talked and decided to go for it. And that's what we're doing today. And guess what? We're finally seeing improvement in his gut!! The nasty wasty poops are gone. We haven't even been doing it for long. By 'it', I mean the topical application of the essential oils. We aren't doing much more than rubbing a few oils like Frankincense, on his skin and sometimes we diffuse some into the air, but that's mostly cuz it smells really good. I still don't know a ton about essential oils, though. Please do me a favor and don't google it. You will come across some majorly creepy and wierd people who use oils for some things that I definetly wouldn't endorse. But the fact still remains: This is the original medicine of earth, the stuff that was used in Jesus' day, and the stuff that is mentioned in the Bible over and over as having healing properties.
And this is where we are today. Using our oils, praying for continued guidance in parenting our extremely special children, and trusting God. Through all of this, even in the valleys, we have always known that God is in control. Whether or not we think he's doing a good job sometimes is a different story but you know what? What we think does not change God's goodness; only our perception of it, and praise God for that! Since He IS good, He has never let us stay in that season of hopelessness. Every now and then we get very tired and discouraged, but He doesn't let us remain that way. He always brings us out with another glimmer of hope, of His faithfulness. Even after all this, we fully believe that God is going to heal our boy, whether it is in 2 days, 2 months, 2 years, or 20 years. I love what I learned in my Beth Moore bible study:
Thanks to my friend Craig and his List, we found some college students to train in the ways of ABA, and a consultant nearby who was certified. Thus began our program. 2 hours/day, 4 days/week (now we are up 4 hours/day, 5 days /week!). I can't even begin to tell you the progress we saw, pretty much immediately. Here is an example from my journal before we started therapy and right around the time we started dietary stuffs:
"March 28 – the past few days have been really difficult for him. Very irritable, throwing fits and basically asking to be disciplined. Getting more aloof and less and less interactive. Constantly scripting. Seems to be regressing."
And here's one from right after one of his first therapy sessions:
"Ro came back up and could name all of his colors, numbers, animals, and all their sounds. He's never done any of that before! We are thrilled!"
Since then, he has learned an incredible amount of content, responds to his name immediately, makes excellent eye contact, and enjoys social interaction much more. I could talk for a very long time about the benefits that this kind of one-on-one therapy has shown for Ro, but just take my word when I say that people who see him now for the first time in a few years can't even believe it's the same boy!
before we started in-home ABA therapy. notice the far away look in his eyes |
a little over a year later. Thats a very non-far-off look in those beautiful eyes. :) |
Then one day, many months later, a friend contacted me about Essential Oils. Honestly, I always thought they were for hippies or those of the middle eastern religions. I hadn't researched them much, but what she told me about them was really appealing, and she had tons of testimonies about how they helped her and many she knew. If you dont know about them, go here and read a little. Really interesting. The original medicine, way before pharmaceuticals. Anyway, after talking with her, and another person, and then another, about the major benefits they've seen, Joel and I prayed and talked and decided to go for it. And that's what we're doing today. And guess what? We're finally seeing improvement in his gut!! The nasty wasty poops are gone. We haven't even been doing it for long. By 'it', I mean the topical application of the essential oils. We aren't doing much more than rubbing a few oils like Frankincense, on his skin and sometimes we diffuse some into the air, but that's mostly cuz it smells really good. I still don't know a ton about essential oils, though. Please do me a favor and don't google it. You will come across some majorly creepy and wierd people who use oils for some things that I definetly wouldn't endorse. But the fact still remains: This is the original medicine of earth, the stuff that was used in Jesus' day, and the stuff that is mentioned in the Bible over and over as having healing properties.
And this is where we are today. Using our oils, praying for continued guidance in parenting our extremely special children, and trusting God. Through all of this, even in the valleys, we have always known that God is in control. Whether or not we think he's doing a good job sometimes is a different story but you know what? What we think does not change God's goodness; only our perception of it, and praise God for that! Since He IS good, He has never let us stay in that season of hopelessness. Every now and then we get very tired and discouraged, but He doesn't let us remain that way. He always brings us out with another glimmer of hope, of His faithfulness. Even after all this, we fully believe that God is going to heal our boy, whether it is in 2 days, 2 months, 2 years, or 20 years. I love what I learned in my Beth Moore bible study:
God is who He says He is.
God can do what He says He can do.
I am who God says I am.
I can do all things through Christ who strengthens me.
His Word is alive and active in me.
------------------------------------------------------------------------------------------------------
Thanks for reading, friends. I will probably come back and update this as I remember things. I know I've left alot out but this was a really good time for me to sit and recall the amazing progress my boy has made over this past year. My deepest desire while writing this is that someone who might be struggling with a family member who has autism could be encouraged and drawn closer to God. He is your only hope, and the only one who can heal. Don't lose hope, and don't be afraid to dream big with God. He's bigger than you think He is, and better too. I leave you with this quote from my favorite book by Kelly Langston called "Autism's Hidden Blessings."
"If love is all we have to give our children, then God will see to it that love is enough."
-Jenn
Thursday, January 13, 2011
How it all started Part Two. What?! Even longer and MORE words?!
Even though Ro wasn't technically diagnosed yet, we began 'seeing' Dr. Mumper, whose office was down in Lynchburg, VA. By 'seeing', I meant that we did phone consults and communicated mostly through emails. We did drive down there once to meet with her and so that she could see Ro face to face. She then ordered a battery of tests; blood, stool, and urine tests. The results came back as a bit of a surprise. Ro had very high levels of yeast in his stools, which was all connected to the use of antibiotics as an infant, and the fact that he most likely had "leaky gut syndrome." Here's what happens with antibiotics. Sorry if you are a firm proponent of them. I'm not and here's why. (Scroll to next paragraph if you don't want to hear my rant.) When you take an antibiotic, it kills off all of the bad AND good bacteria in your intenstines. This means that now, there is no happy flora to keep your gut functioning well and protected. So when the bad bacteria comes, it now has lots more room to make it's home, instead of before the antibiotic was taken, when they were at least living side by side. Now the bad guys take over. And voila, yeast forms. And stays. And if you like any kind of foods with high glycemic levels, it will feed on that and stay. Ro took lots of antibiotics when he was little. He had several ear infections (due to a low immune system which i believe was mostly caused by vaccines. What?! Still reading? Stay with me.), and an infected spider bite that required some really strong stuff. His poor little gut was overridden with yeast. This made his poop wierd and SUPER stinky, and affected his behaviors as well. (That is again, a whole other blog post in itself.) Just trust me when I say that if you are going to take an antibiotic, please pretty please take a probiotic too. And eat lots of yogurt.
Anyway, on to the yeast meds. We took Ro off of ALL sugary foods; fruits, juice (mostly), and even starches that turn into sugars. We were determined to starve this yeast out and get our boys gut healthy so it could absorb nutrients again. Long story short, while working with this doctor, we tried several different anti-fungal medications, only one of which showed any changes, but for some reason we didn't contine with. The problem with the medications was that yes we were treating the yeast, but we weren't solving the real problem. We were going in circles. Treat the yeast, it comes back, treat it again, it comes back. Why wasn't it staying away? There's got to be something at a more cellular level as to why this happened and continues to need treatment. So, rather than going in circles and debt, we stopped working with this doc and went on to other things. More on that later.
We also learned that Ro had high levels of lead in his blood, most likely from the water we drank when we lived in an old log cabin while he was an infant, although we can't be sure of that. Regardless, that was when we started seriously considering chelation, the removal of heavy metals from the blood. It's controversial, and since we haven't felt God leading us there yet, we haven't done it.
In the last post, I said that I'd talk about how we realized something was up with Ro in the first place, or rather how we realized it looking back. Here is a quick list of odd behaviors that we just dismissed as quirky. Once you see it, you'll wonder if we were even paying any attention, but I assure you, denial is a very strong state of mind.
-toe walking
-lack of interest in playing with other kids
-repeatedly hitting leaves with a stick to watch them bounce
-tapping a water bottle to watch the water move, over and over
-zoning out for long periods
-watching things pass by his peripheral vision
-obsessed with watching bubbles
-flipped over trucks to spin the wheels and watch them for long periods
-loss of language and imitation
-far off look in eyes
-unresponsive when name was called
In June of 2009, over a year after my talk with my friend, we finally got Ro in for an evaluation to get his official diagnosis. By this time, we knew he had autism but presumed it was just on a mild level. After the developmental pediatrician did her thing, she said the words that took our breath away and changed our families' course forever:
Classic Autism: Severe.
Oh my Lord. I was not prepared for that. I was not prepared for the feelings that would come after. I was not prepared for the barrage of doubt and pain that crept into my heart in that moment. Severe? What does this mean? I asked the lady if she was sure. She assured me that the harsher the diagnosis, the better his services would be. She then quietly said, "I rate harsh." I knew that she was meaning to tell me that she gave him this rating so that he would get the best possible services that he could. She ended up showing me the test she gave him and that she could have gone either moderate or severe, but veered to the more severe so that he'd be guaranteed the most aid. I was thankful for her thoughtfulness and took a little comfort in knowing that he was in fact only moderate. On our way out, she handed me information on how to start an in-home ABA program (Applied Behavior Analysis). This is the gold standard for autism treatment and has been scientifically proven to be the most effective way to teach a child on the spectrum.
I went home and dove into the research yet again. I bought books and read them all. People had seen AMAZING progress! This is something that we had to do. Just had to. No ifs, ands or buts about it. It was extremely expensive, but I had never felt so strongly about anything for Ro until I learned about ABA. Joel was soon on board too, and so the search began for a consultant and therapists. The search didn't last long though...more on that in a minute. I feel like you need to know where our hearts were at that point in time...
In the past 2 years, but particularly the months following that talk on the couch , there have been more than a few occasion in which we have doubted God's goodness and faithfulness. There were times when we honestly were hanging on to believing by the thinnest, shortest thread. Actually, to be honest, Joel and I both experienced more than a few moments of wondering if God was even real and if he cared at all. Such an incredibly dark time. Anger towards Him was all that we could feel sometimes. And fear that nothing would change. That He wouldn't come through and help. That He really wasn't good after all. This diagnosis felt like a death, at least to me. Everything that we 'knew' about autism told us that our son would never be able to connect emotionally with us or anyone else, and would be living in his own little world with no desire to communicate or be part of ours. That, my friends, was a very hard pill to swallow. It took us almost 6 months after Ro's diagnosis to be able to start feeling even an inkling of hope again. And if you are a friend of ours who was going through this with us at the time, know that we felt the love. You couldn't possibly know how much your support and prayers meant to us. We see, looking back now, that of course God IS in fact good and He knows what He is doing, and He gave us you guys to walk with so that we didn't need to bear the burden alone.
Moving on...
Because he finally had a diagnosis, we were able to start him in special needs preschool that was right around the corner, which he and I both needed for our sanity's sake. He went three days a week, all morning. It was a very special time for Asher and I to have together, and after the first few weeks, Ro got used to it and enjoyed it. He didn't really progress or learn much, but it was much needed regardless. However, our main goal was to start an in-home ABA program for him, which meant that we'd hire a consultant and at least one therapist to work one-on-one with him in our home for at least 4 hours a day. We knew that if we were going to afford this, we'd need to move into a much cheaper and smaller home, and the idea of living near family was very appealing, so after a LOT of prayer, talking, prayer, more talking and lots more prayer, we decided to move back to NY. It was an incredibly difficult decision to make, as our best friends lived only next door and moving meant leaving them for good. We had to really seek the Lord and ask Him what was the absolute best thing for Ro. He made it clear. So, we put in our notice and our landlord let us out of our lease. We were moving back to NY to begin an in-home ABA therapy program for Ro. Joel's boss has kept him on working remotely from home and Tom, if you ever read this, (which, if you are, that means you are even cooler than I thought you were) I can't tell you how much we've appreciated your support. You're seriously the best. boss. ever.
We got to NY and moved in with Joels' parents while we began our search for a home, and an ABA consultant and therapists. It was much harder than I thought....
Stay tuned for the final chapter! :)
Anyway, on to the yeast meds. We took Ro off of ALL sugary foods; fruits, juice (mostly), and even starches that turn into sugars. We were determined to starve this yeast out and get our boys gut healthy so it could absorb nutrients again. Long story short, while working with this doctor, we tried several different anti-fungal medications, only one of which showed any changes, but for some reason we didn't contine with. The problem with the medications was that yes we were treating the yeast, but we weren't solving the real problem. We were going in circles. Treat the yeast, it comes back, treat it again, it comes back. Why wasn't it staying away? There's got to be something at a more cellular level as to why this happened and continues to need treatment. So, rather than going in circles and debt, we stopped working with this doc and went on to other things. More on that later.
We also learned that Ro had high levels of lead in his blood, most likely from the water we drank when we lived in an old log cabin while he was an infant, although we can't be sure of that. Regardless, that was when we started seriously considering chelation, the removal of heavy metals from the blood. It's controversial, and since we haven't felt God leading us there yet, we haven't done it.
In the last post, I said that I'd talk about how we realized something was up with Ro in the first place, or rather how we realized it looking back. Here is a quick list of odd behaviors that we just dismissed as quirky. Once you see it, you'll wonder if we were even paying any attention, but I assure you, denial is a very strong state of mind.
-toe walking
-lack of interest in playing with other kids
-repeatedly hitting leaves with a stick to watch them bounce
-tapping a water bottle to watch the water move, over and over
-zoning out for long periods
-watching things pass by his peripheral vision
-obsessed with watching bubbles
-flipped over trucks to spin the wheels and watch them for long periods
-loss of language and imitation
-far off look in eyes
-unresponsive when name was called
Ro just a few months before the regression began |
this is a photo of Ro at just over 2 years old |
A few months before the diagnosis, Staring off into the sky |
Classic Autism: Severe.
Oh my Lord. I was not prepared for that. I was not prepared for the feelings that would come after. I was not prepared for the barrage of doubt and pain that crept into my heart in that moment. Severe? What does this mean? I asked the lady if she was sure. She assured me that the harsher the diagnosis, the better his services would be. She then quietly said, "I rate harsh." I knew that she was meaning to tell me that she gave him this rating so that he would get the best possible services that he could. She ended up showing me the test she gave him and that she could have gone either moderate or severe, but veered to the more severe so that he'd be guaranteed the most aid. I was thankful for her thoughtfulness and took a little comfort in knowing that he was in fact only moderate. On our way out, she handed me information on how to start an in-home ABA program (Applied Behavior Analysis). This is the gold standard for autism treatment and has been scientifically proven to be the most effective way to teach a child on the spectrum.
I went home and dove into the research yet again. I bought books and read them all. People had seen AMAZING progress! This is something that we had to do. Just had to. No ifs, ands or buts about it. It was extremely expensive, but I had never felt so strongly about anything for Ro until I learned about ABA. Joel was soon on board too, and so the search began for a consultant and therapists. The search didn't last long though...more on that in a minute. I feel like you need to know where our hearts were at that point in time...
In the past 2 years, but particularly the months following that talk on the couch , there have been more than a few occasion in which we have doubted God's goodness and faithfulness. There were times when we honestly were hanging on to believing by the thinnest, shortest thread. Actually, to be honest, Joel and I both experienced more than a few moments of wondering if God was even real and if he cared at all. Such an incredibly dark time. Anger towards Him was all that we could feel sometimes. And fear that nothing would change. That He wouldn't come through and help. That He really wasn't good after all. This diagnosis felt like a death, at least to me. Everything that we 'knew' about autism told us that our son would never be able to connect emotionally with us or anyone else, and would be living in his own little world with no desire to communicate or be part of ours. That, my friends, was a very hard pill to swallow. It took us almost 6 months after Ro's diagnosis to be able to start feeling even an inkling of hope again. And if you are a friend of ours who was going through this with us at the time, know that we felt the love. You couldn't possibly know how much your support and prayers meant to us. We see, looking back now, that of course God IS in fact good and He knows what He is doing, and He gave us you guys to walk with so that we didn't need to bear the burden alone.
Moving on...
Because he finally had a diagnosis, we were able to start him in special needs preschool that was right around the corner, which he and I both needed for our sanity's sake. He went three days a week, all morning. It was a very special time for Asher and I to have together, and after the first few weeks, Ro got used to it and enjoyed it. He didn't really progress or learn much, but it was much needed regardless. However, our main goal was to start an in-home ABA program for him, which meant that we'd hire a consultant and at least one therapist to work one-on-one with him in our home for at least 4 hours a day. We knew that if we were going to afford this, we'd need to move into a much cheaper and smaller home, and the idea of living near family was very appealing, so after a LOT of prayer, talking, prayer, more talking and lots more prayer, we decided to move back to NY. It was an incredibly difficult decision to make, as our best friends lived only next door and moving meant leaving them for good. We had to really seek the Lord and ask Him what was the absolute best thing for Ro. He made it clear. So, we put in our notice and our landlord let us out of our lease. We were moving back to NY to begin an in-home ABA therapy program for Ro. Joel's boss has kept him on working remotely from home and Tom, if you ever read this, (which, if you are, that means you are even cooler than I thought you were) I can't tell you how much we've appreciated your support. You're seriously the best. boss. ever.
We got to NY and moved in with Joels' parents while we began our search for a home, and an ABA consultant and therapists. It was much harder than I thought....
Stay tuned for the final chapter! :)
Wednesday, January 12, 2011
How it all started *UPDATED*
*UPDATED info in purple*
Well, as promised, here is part one of the story of our journey with Ro and the Autism Spectrum thus far. This is going to be wordy and long. Fair warning.
On March 6th of 2008, when Ro, our firstborn, was almost 2 years old, a very dear friend sat me down on my couch one night and told me that she had visited a website called Autismspeaks.org and watched some videos of children on the spectrum. She immediately started weeping, as she knew she saw Ro in some of those behaviors. She prayed and prayed, and felt that she had to tell me. The conversation we had on my couch that night was one I will never forget. It was a knife in my heart. I was completely disagreeable, offended, cut to the core, and told her that I never wanted to speak of it again unless I brought it up.
She had to be wrong. Autism was the Rain Man. It just wasn't possible, end of story.
This wasn't the response she was looking for. She was hoping that she'd be able to help me work through this and talk about it, but really, I wanted to rebuke her and tell her to leave and never talk to me again. (Keep in mind, this person was and still is one of my besties and knows all of this.) In fact, for at least a week afterwards, even though we saw each other almost every day, I didn't even look at her. Forgiveness was not even in the universe of my vocabulary. I could barely even see past the hurt and fear that clouded my every thought. And to top it off, that night, I found out I was pregnant with Bella.
Before I go on, I need to give you alittle bit more background on Ro. He was always very intense and different, even quirky (will talk more about his 'quirky' behaviors in next post). But we never saw it in the moment. When he was 18 months old, I did realize that his language wasn't where it should be, so I started looking into that, but whenever 'autism' popped up in the google search (pretty much never a good idea to google anything having to do with health), I just clicked past it. Not possible. And when I would ask the pediatricians (I asked at least three different ones) if they thought there were any issues, they ALL said he was just a quirky late bloomer. Seriously? Three doctors? Fail. Ro continued to lose language skills, social skills and even began showing some physical health issues. This led to the next thing.
After my friend confronted me, my eyes slowly began to open. Very reluctantly though because let's get real here. You never want to be analyzing your own kid for problems of this nature. But alas, it's where I was. And Joel was barely even able to acknowledge that it was even a possiblity because he was hurting so badly, so I was on my own. No fault of his either. I think a father's heart is much more affected when something like this occurs to their firstborn son. Needless to say it was a very, very dark time for both of us. I remember several days, maybe even weeks, that Joel and I could barely eat or sleep because of the darkness that seemed to surround us.
One day, several months after the talk with my friend, Joel and I were on a walk with the kids, and were kind of skirting around the issue when all of a sudden, I just yelled out something like this. "I am so tired of running from this! We are going to do something about it." The next day, as Joel was praying for me for wisdom, at that very moment, I came across something that had never appeared in any of my google searches before. "Autism Recovery." At this point, I sort of 'knew' that Ro was somewhere in that category, but I couldn't bring myself to admit it, so I clicked on this and began reading about it under the guise of 'well, he shows lots of these symptoms so even though he's not autistic, maybe this stuff could help anyways.' This is when my world turned upside down. (Again.)
Upon researching more about this, I learned about things like the Gluten Free, Casein Free Diet, ABA Therapy, Vaccine Injury, and the list goes on and on. You mean there are things I can actually DO to help my boy? As soon as Joel got home, I told him about it and we knew it was time. So, within a few days, we took Ro off of gluten and dairy and guess what? We saw immediate changes. The very FIRST day, he started sleeping through the night, his rosy cheeks went away (rosy cheeks are a common reaction to a milk sensitivity, as is waking in the night), and he actually started responding to his name. That was proof to me, and I'm still a firm believer, that autism is not just a neurological disorder but an autoimmune disorder and a gut issue. Did you know that studies are now showing that autism is affecting 1 in every 94 children now? That's like a bazillion percent increase from when you and I were kids. And did you know that the increase in autism directly correlates with the increase in immunizations? Oy. I could go on about this too, but let's stick to Ro and and I'll try and stay off my soapbox. :)
We did the diet thing for a while, and still do, without adding too much else. We did start seeing a holistic doc for him too, to see if there was other stuff we could do, and explored chelation, which is the removal of heavy metals. Upon more research though, I found that if his little gut does have issues, it might be better to solve them first before trying to attack something like mercury in his system. So, we still haven't done that yet. Somewhere in the next 6 months, we did finally admit to ourselves that Ro was in fact on the spectrum somewhere, which actually made it easier to talk and discuss about what to do next. I became a full time researcher. I read every book I could read on autism, and found a doctor we thought could help. Even though she charged $400/hour, she was the best, so we began down the road of finding out just what was going on in our boys' body.
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Kind of dry, right? Part 2 coming later today, maybe tomorrow. Takes a while for me to get these thoughts down. It's still not that easy to talk about, but it's a little therapeutic. Thanks for listening!
Monday, January 10, 2011
I have a good excuse
Sorry for the lack of posts recently. I have a really great reason. Well, a not so good reason, but then a great reason after that.
On Thursday night, I woke up in the night to feed Haven and felt rather nauseous. Then throughout Friday, I was feeling gross too but was getting better as the day went on. I was really bummed though, because Friday night, Joel and I were supposed to go have a 'night away' while my in-laws watched our kids. I had been looking forward to this for weeks. No kidding. One night away, and an entire Saturday with no kids sounded like heaven. So you can imagine how bummed I was when I got sick for the first time in months on the worst possible day. Well thankfully, I did feel well enough Friday evening to take my in-laws up on their offer and so off we went, on our romantic weekend away!
And by "away", I mean that Joels' parents let us spend the night and Saturday at their empty house. Sure, may not sound that exciting to you, but to us, it was VERY exciting. We went over to their house Friday night, watched Inception (which is a whole other blog post) by a roaring fire in the fireplace, then went to bed. Slept in til 9ish, went to a local diner for breakfast, to Lowe's to pick out the new flooring for our kitchen (we found one we both love! SCORE!), then back to the Inn. Here's the kicker for me, and honestly my favorite part of the whole day (other than being with Joel of course). I took a (wait for iiiiiiit......)
Are you a mom? Are you sleep deprived? Do you dream of the day when you can have a full night's sleep? Do you wake up to screaming children only to realize that you just fell asleep and haven't even had a dream yet? Do you wake up 136 times in the night to nurse a baby who doesn't understand that you don't function well on less than 3 hours of sleep? When was the last time you took a nap longer than 20 minutes or when you didn't have to say to your husband "wake me up when your lunch break is over"? For me, it's been about 4 years.
Yeah. Felt good.
Woke up whenever the heck I wanted to, we went to Walmart (without rushing!), came home and watched an episode of Psych together, then went out to dinner to our favorite place; Ruby Tuesday. We seriously go there pretty much every time we have a date night and have yet to be disappointed. I still wasn't feeling 100% so i didnt eat tons but guess what? Leftovers RULE! And nothing beats good conversation. I love my husband. He is a romantic. He is in love with me. He thinks I'm hot. I feel really blessed.
We really needed our little day away. Gonna have to figure out how to make that a more regular occurance. Anyone insane enough to come watch all 4 kids for an entire day sometime in April? :)
In other news, stay tuned. I've had many requests for the story about how Ro got diagnosed and that whole season of our lives. Sometime this week I'll be doing a not-so-humorous-but-honest-post on that.
And because I simply cannot post without a picture of some kind, here's the newest additions to the shop:
You should probably go buy those. They're both made from designer fabrics and are very nice. If I do say so myself.
On Thursday night, I woke up in the night to feed Haven and felt rather nauseous. Then throughout Friday, I was feeling gross too but was getting better as the day went on. I was really bummed though, because Friday night, Joel and I were supposed to go have a 'night away' while my in-laws watched our kids. I had been looking forward to this for weeks. No kidding. One night away, and an entire Saturday with no kids sounded like heaven. So you can imagine how bummed I was when I got sick for the first time in months on the worst possible day. Well thankfully, I did feel well enough Friday evening to take my in-laws up on their offer and so off we went, on our romantic weekend away!
And by "away", I mean that Joels' parents let us spend the night and Saturday at their empty house. Sure, may not sound that exciting to you, but to us, it was VERY exciting. We went over to their house Friday night, watched Inception (which is a whole other blog post) by a roaring fire in the fireplace, then went to bed. Slept in til 9ish, went to a local diner for breakfast, to Lowe's to pick out the new flooring for our kitchen (we found one we both love! SCORE!), then back to the Inn. Here's the kicker for me, and honestly my favorite part of the whole day (other than being with Joel of course). I took a (wait for iiiiiiit......)
TWO HOUR NAP!!
Are you a mom? Are you sleep deprived? Do you dream of the day when you can have a full night's sleep? Do you wake up to screaming children only to realize that you just fell asleep and haven't even had a dream yet? Do you wake up 136 times in the night to nurse a baby who doesn't understand that you don't function well on less than 3 hours of sleep? When was the last time you took a nap longer than 20 minutes or when you didn't have to say to your husband "wake me up when your lunch break is over"? For me, it's been about 4 years.
Yeah. Felt good.
Woke up whenever the heck I wanted to, we went to Walmart (without rushing!), came home and watched an episode of Psych together, then went out to dinner to our favorite place; Ruby Tuesday. We seriously go there pretty much every time we have a date night and have yet to be disappointed. I still wasn't feeling 100% so i didnt eat tons but guess what? Leftovers RULE! And nothing beats good conversation. I love my husband. He is a romantic. He is in love with me. He thinks I'm hot. I feel really blessed.
We really needed our little day away. Gonna have to figure out how to make that a more regular occurance. Anyone insane enough to come watch all 4 kids for an entire day sometime in April? :)
In other news, stay tuned. I've had many requests for the story about how Ro got diagnosed and that whole season of our lives. Sometime this week I'll be doing a not-so-humorous-but-honest-post on that.
And because I simply cannot post without a picture of some kind, here's the newest additions to the shop:
You should probably go buy those. They're both made from designer fabrics and are very nice. If I do say so myself.
Wednesday, January 5, 2011
(Not so) Wordless Wedensday
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