Tuesday, June 13, 2017

Feeding and Sewing - Reality

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It's hard to be real. I mean, there are messes when we do real. But, this week has been one very deeply rooted in real.

Last Friday Charlie Brown got food poisoning. We decided to go to a burger place while we were out doing things and allowed him to get a chocolate shake as a treat. On the way home everything he had eaten that day came back up ... on the side of a dirt road ... in the middle of nowhere. Sigh.

At first we figured he had a stomach virus. Then, while working on Saturday, one of my husband's coworkers mentioned his son was sick and had thrown up the previous afternoon like our son had. My husband jokingly asked if he had, by any chance, eaten at the same restaurant (we live an hour from it, he lives in the same town as the burger place). Wouldn't you know it, he had. To top it off, his son had a chocolate milkshake as well. Both of them were the only ones in their family to have a chocolate shake. Mystery solved. Food poisoning.

They called Teledoc to get Phenergan and we went the homeopathic route. Saturday, after they had both gotten sick a few times we both got meds on board and both boys had happier tummies.

However, things aren't that easy in our home. When you have a child with feeding issues already, you don't just bounce back and start eating again once the nausea and vomiting leave. He lost all sense of hunger and hasn't gained it back. Thankfully we have tube feeds and off we went. We started just like if a child had no tube and introduced basic simple items, then got more normal as he held them down. He did great. No nausea at all. Just no hunger either. Yesterday I did a slow tube feed over the entire day for his calorie intake. Not bad. Until supper. He suddenly felt over full. He went to lay down and this is when things get realer than real.

If you don't have a tubie, you don't know the joys horror of how to help. You do a tube feed in reverse. Yep, you pull the food from the tummy instead of putting the food in. I hate that part. UGH! He hates that part. Double UGH! It doesn't hurt, but you can just imagine what it looks like and smells like. Yep. I pulled 10oz off of him. I don't know why he had that much in his belly, but he had stopped digesting quite a while before if 300ml was still in his belly. (there was more, but I stopped there) He felt so much better. He got up, his face pinked up, and he asked for food. I laughed and told him I had just taken dinner out of his belly, was he sure he wanted to eat. Yes, he felt great, he was STARVING. OK, first time we felt hunger so let's roll with it since I knew he only felt icky because of too much food in his belly.

He ate.

He brushed his teeth.

He got his pajamas on.

He hugged us all goodnight.

He went to bed.

He threw up everything he had for dinner plus the food that was left behind from my adventures.

ARGH!

This morning I decided to go low and slow. I gave him 150 calories over a longer period of time. Worked great.

Then it was time for a second feeding. I gave him 2 1/2 syringes full (each is 60ml) and he got sick. Seriously? Before Friday he could have 350ml in a very short period of time without blinking an eye. So we laid him down, asked if he wanted us to pull it from his belly instead of throwing up. He wanted to wait. He felt horrible but it finally passed with just a few very nasty burps.

And THAT, folks, is the reality of a tummy bug with a kid who has feeding issues. I don't know when his sense of hunger will return. I don't know when he will be able to tolerate more volume of food. It's all a mystery.

And that leads me to sewing. This reality of life isn't nearly as UGH worthy.

I picked up a robe pattern for my sons. Yes, in the summer. Yes, where 100 degrees in the summer is a nice day. Yes, in a part of the country that does NOT have a "dry heat". They are all about their robes. They love robes.

Photo Credit
Cute, simple, and yes made of warm fuzzy fleece (I will give you a minute to wipe the sweat from your brow as you think of fleece during the summer).

But this is the reality of my sewing area as I looked at all the pattern pieces, measured the boys with my tape measure to find the size they needed, held up pattern pieces to them to verify the size, and more.


And, yes, that is BB-8 fleece for the robes. The boys love BB-8 and this was on clearance at my Walmart for $2.00/yd. 


The mess will leave, eventually, just like the tummy troubles. But, right now, I feel neck deep in mess. Reality. Hard to show but totally worth it.

Monday, June 12, 2017

Cute Reusable Bag Pattern - Free

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I had some small pieces of fabric left over from other projects and I wasn't sure what I wanted to do with them. However, when I saw this free market bag pattern from Stitch Upon A Time, I knew I had found the perfect project for my scraps.

Photo Credit - Stitch Upon A Time
Come on, how cute is that? I downloaded the PDF pattern and printed it. By the way, let me stop here. PDF patterns ... have you heard of them? They seem to be all the rage with those who sew. Cheaper than patterns, many times free, lots of options, just a great idea all around. This was my first PDF to make, though I have a few on my computer waiting to be used.

Back to the story. It said it could be made in 30 - 60 minutes. They weren't lying. If you add in the time it took me to tape the pattern together, it was just at 30 minutes total. The best part is, now that I have the pattern together, I can skip that on all future bags. Yes, there will be more made.

The best part is, I finally, finally, FINALLY got to use my new serger. I will admit to being a bit intimidated by it. But, I figured a bag was about as basic as you could get and, if I messed it up, big deal. I didn't mess it up. Don't let that scare you off if you don't have a serger. You can totally do this with a regular sewing machine. You will notice red and yellow thread. My serger came with thread already loaded and I didn't feel like rethreading the machine. Since it doesn't show, I just used the 4 colors that came with it. As my younger son said, "that's a good idea Mom, free thread".


How cute is this? I made one of my jeans to skirts out of this fabric and has almost exactly how much I needed left. The tiny piece I had left over is now in my scrap bin and will be used for something cute once I get enough collected. 


I could't be boring and just have that floral print. Inside is a coordinating color. You could EASILY make this reversible with just a bit of forethought on how you put your handles together. That's the only part that shows any seams. 


This bag is a lot sturdier than I thought it would be, especially since this is just a cotton fabric. I will be making more of these with non-scrap fabric. My Walmart is having a big sale on fabric right now and I just happened to see a cute pink bolt that was thicker and would make a wonderful bag (or three).


Tuesday, May 23, 2017

Skirts From Old Jeans - The Video

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Don't you love it when you get an idea, figure it all out, and THEN find out YouTube has videos that show you step-by-step what to do? No? I am the only one who forgets the great and wonderful Oz that is YouTube?

The skirt that I made the other day is super easy, but you might want a video to see it actually going together. I found two that are good.

This first one is done with two pairs of jeans, but you simply skip the second pair of jeans (hey, make a second skirt - woo hoo) and use fabric instead (or use the second pair and go totally denim!). My only advice on this video is to ignore her when she says you can't use skinny jeans. My first skirt I made was using skinny jeans and it totally works. You just need a little bit more fabric.




Next is a video of a Mom (I think I heard a little in the background) making a skirt with fabric like I did. It's short but she shows you how it's done.


You should know, I have become a massive fan of this process and how these skirts fit. I rummaged through my closet yesterday to see if I had any more jeans that I could deconstruct in this manner and found a set that the rise has always been a bit shorter than I liked. With a skirt, rise doesn't matter! I spent a bit of time after my kiddos went to bed and ended up with a second skirt that's fuller. My first set was made from skinny jeans. This set was using wide leg with a fun accent on the pockets. 



Sunday, May 21, 2017

Do We Call Them Jerts?

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I have a pair of jeans that are the best. Oh, they are soft, fit me like a glove, move how I move, and are like buttah (in my best Jersey accent). It's like they were custom made for me.



Then I dried them in the dryer a few times, instead of hanging them up like usual, and they shrunk in the length.

No biggie. I wore them with cute flats and pretended they were supposed to look like that. I LOVED these jeans.

Then I lost over 25lbs and they fell off of me ... quite literally.

OK, time to toss them in the donate pile.

Or should I?

Instead I decided to make a skirt out of them.

Here's the process I am going through, all I have left is to stitch them and I will have my finished project.

Step 1: Lay your jeans out and find the inseam. Starting at the ankle, cut up the seam just to the INSIDE of the natural hem that's already sewn into the pants. You can see me doing it below. Yes, you can seam rip, but it's just not as pretty, doesn't give you the same finished edge, and it a lot more work. Scissors take a few minutes. Cut right around the crotch (know there's quite a bit of fabric there, so use quality fabric scissors) and down the other leg to the hem.


Step 2: You will have a place like the below picture where the crotch met the zipper/rise. If you don't not alter this, you will end up with a funky pokey out part (yes, that is a word, just don't look it up in the dictionary - lol). So, you need to cut that to the LEFT of the seam the way you did the inside of the seam on the legs. You want that nice finished seam showing. Repeat for the back or you will have a tail.




Step 3: Once you make this cut, lay your pants out and smooth them out on each side, front, and back. It doesn't have to be perfect for this next part, just flat. Your jeans will look odd now, like they aren't quite finished. This is what you want.

Step 4: The piece you just cut under the zipper is important. You want to now lay the right side (the one with the pretty finished seam) over the left. Make sure it's very flat. If you have a small pucker, cut a tiny bit higher (do a little at a time so you don't have to sew extra). Do this snipping until it will lay nice and flat. Pin the flap down. Repeat this in the back with the flap you made there. 



Step 5: You need to have a contrast fabric. You can also use another pair of similar jean and just cut the legs off as close to the back pocket as you can, cut down the leg the same way you did with this, and use that open flat piece as your fabric. You can have fun with this. I chose a nice color similar to my jeans so I could have a lot of options for shirts and accessories. But chose a funky fabric, a contrasting color, whatever suits your style. 

Either way, cut a piece of fabric bigger than your opening and make sure it's long enough for a hem. How nice it is does NOT matter. You won't see any of it so no biggie. Lay it in the opening and smooth everything out. You want to pin it all the way up and around. Start at one hem at the bottom, pin it up and down to the other hem, making sure it's smooth with no puckers. 

Step 6: Do you see the jeans factory hem going down both legs on the front and back? You will want to follow that hem. Just stitch right over their stitching. You have a few choices. You can use the jean thread that comes on most jeans, choose a blue thread so it blends in, or choose a funky color if you want that exposed stitching to show. I will be using navy as I want the jeans and fabric to be the star.

Make sure you stitch down the flap you made cutting below the zipper and you are ready to hem. all you need to do is hem the new fabric. The rest is done for you since the jeans are already hemmed. If you have used a second set of jeans to make the entire thing denim, you don't even have to hem. You are ready to go onto the final step.

Step 7: Hem your fabric. this is the part I do not have finished yet and will have to show you once I take a picture of my entire skirt on me. You simply want to fold up the fabric, pin it to the length you need to match your denim, and hem it with a coordinating thread. I will be using navy since it matches my denim and also coordinates with my print fabric. 

That's it. You are done. You have made a skirt. This can easily, easily be done in an hour. Imagine the possibilities. You could find old jeans second hand and have a fun time making a whole new wardrobe cheaply. 

I popped around the internet to find you some inspiration. Check out these cute skirts. 








Friday, May 19, 2017

Mother's Day Again

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My husband's plans for my mother's day present fell through ... hard. But, I am not so sure I am upset about it. Because of that, this little beauty is on it's way to me this coming week. I already had 7 projects in the works for it. 

Photo Credit
It's been years since I used a serger. I won't tell you the exact number, but it involved a high school home ec. course. I am excited and nervous all rolled up into one. I will be practicing and figuring it out for the first few days, that's for sure.

If all goes well I will have a few projects to show you soon. If not, just look for the crazy lady running down the road with old pieces of thread and bits of fabric trailing behind her.



Sunday, May 14, 2017

Mother's Day in an Alien Land

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Before I was convicted about some of my movie watching, I saw Twilight. I remember a scene where Bella and Edward and his brother were trying to get her to safety. They were driving in her truck running from a very dangerous situation. She looked out the window to see, in slow motion, her high school friends all coming out of a local coffee shop/diner. They were happy, laughing, just going on with their typical teen lives and she felt so outside of that, so removed from it, like that was her life and now this is. She felt alien to it.

That's so often what it feels like to be a special needs Mom. This weekend as families celebrated mother's day with flowers, fun meals, laughter, and more. I was giving my child with pale skin and huge dark circles under his eyes a breathing treatment trying to help him stop coughing so hard he couldn't breathe. I was giving him tube feeds because food just wasn't in the picture. I saw Moms, as I went to the pharmacy and the ER, laughing with their kids, walking with them, wearing cute skirts, and just having a wonderful weekend. I don't wish they knew this life. I am glad they have THAT life. It's just that it feels so alien to me to see such a relaxed situation, such ease, and I feel so removed from it.

Even when we were in the ER I saw parents bring in children with some typical pains and illnesses of childhood (a young girl got hurt on the soccer field, a young child woke up with a little fever and a slight cough but he was young and Mom was nervous, and a third child had a rash). I pray each of them feels 100% better today. But even then I felt so removed. I was wondering if the hospital had medicine that was safe for my son (sometimes they don't). I was contemplating how to get the medical food to the hospital because I DEFINITELY knew they didn't have his medical food for his tube feeds. I was praying we had a doctor/nurse/staff that wouldn't use the N word (needle) because that would set him off and I needed to prep him for anything that would hurt. I prayed he wouldn't beg me, AGAIN, to not "let them do this to me Mommy, please." because my Mom heart couldn't handle it.

I love my boys, as they say, to the moon and back. I adore them. I would walk this journey with them for a thousand years if that's what they needed and I had the ability. But it just seems the world keeps on turning, people keep living and breathing and smiling and laughing, and wearing cute dresses with kids in matching outfits and I am walking around with a thousand thoughts in my head wondering if anyone notices the medical food I spilled on my pants that morning as the med port of the extension popped open.

I am not looking for sympathy. It's just the feelings I have each day. I am so grateful I have a God that loves me through these raw feelings, these feelings of being so removed from reality and gives me strength to face another day of it.

Monday, May 8, 2017

Book Recommendation

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We have started to use some homeopathy in our home with our family. So far it's working well and we are appreciating the effects we are seeing in our health. We have addressed this two-fold. We are using a homeopath that we feel comfortable with her methods and we have a "self-care" book that helps us with acute issues as they arise. (headaches, stomach problems, injuries, etc)

I really like how the book I chose is set up and think its explains everything well to the common user and makes finding remedies very easy. Thus, I wanted to share it with you. It is called Homeopathic Self-Care: The Quick & Easy Guide for the Whole Family by Robert Ullman, N.D. and Judyth Reichenerg-Ullman, N.D., MSW

I hope you will enjoy this book as much as I have. Click on the picture to take you directly to an Amazon page that sells it. I get no money if you look at it/purchase it from the link. It is just provided for your ease.

Wednesday, May 3, 2017

Sleep Issues

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From the day we brought little Linus home, sleep has been an issue. When he was an infant we would work for a solid 2 hours to get 30 minutes of sleep out of him, only to have him wake again and we would start the process over. He barely slept. Oh, I don't mean the typical baby issues of sleeping a bit less than their counterparts. I mean he BARELY slept. I don't know how you can survive off such little sleep. I should know, I slept less because I had to get to sleep after he went to sleep.

It moved to the point he couldn't sleep without touching me. Not Daddy, not big brother, not anyone else in the family or outside the family ... me. I wore him during the day a lot, just to give my arms a break.

We finally moved to sleeping in our bed even if he wasn't touching me. I worked and worked with him, trying to teach him to sleep on his own.

We put him in his brother's room, thinking company would help.

Nope.

We put him in his own room thinking he need to be alone.

Nope.

We put him in our room to go to sleep and then carried him into his own bed.

Nope.

We tried it all. We bought fun bed tents, sleeping bags, pillows, toys, no toys, special books, fun sheets, anything and everything to help him sleep in his bed.

His anxiety always won out.

We gave up for quite a while and just said sleep in our room. We were tired after years of trying. It wasn't getting us anywhere and I think we all just needed a break.

We worked on the anxiety and learned what caused a lot of it. We started to heal that. That was hard since it wasn't from a trauma, experience, or other situation where traditional therapies or meds could help. It was from food and that's hard to even diagnose, much less treat.

Finally we decided it was time to try again. But we knew just saying "stay in your room" would not work and we would doom ourselves to failure. We weren't sure how to proceed.

One morning we woke up to find our older son had pulled one of our camping cots out and had slept in the living room. He was just uncomfortable in his bed the night before, not sure why, and came up with this solution. It also gave me an idea for Linus.

I asked him if he wanted to sleep in the living room with big brother on camping cots. I told him we could work on getting him into his own room this way. I also offered a reward. I told him I would pay him $1/night for 7 nights if he could sleep outside of our room. He was all for it and big brother thought it was going to be a fun week of sleeping on cots in the living room. Win-win. We told him our bed was available if he needed it, but to try his best, that's all we asked.

Night one came and went ... no Linus in our bed.

Night two came and went ... no Linus in our bed.

Night three, four, and five, same outcome.

On night six I suggested maybe a bonus if he slept in his own bed. I told him $2 instead of $1 if he did this. He tried. He couldn't. I told him no biggie. He still slept in the living room so he got his $1.

Last night was night seven. He asked if the $2 deal was still offered for sleeping in his own bed. I told him it was. He said he wanted another chance. I think he just needed that extra day to really wrap his mind around this new change of bed location. I pulled the cots into the living room, but kept them folded against the wall. He could open them up if he needed to and sleep in there. He likes a safety net.

I will just say this, Both boys are sleeping and I am in the living room typing this post. Yep, he was successful and I am out $8. It's the best $8 I ever spent.

He doesn't know it, but the next offer will be different. He will get $1/night for 7 nights if he sleeps in his own room this next week. After that we will move to $1/2 nights, and then $2 for the whole week. We have used this type of reinforcement before with him. It's been successful when he's ready but still having a hard time with the transition. When things get uncomfortable, the temptation becomes strong, he has something tangible to help him move past it.

I am hoping for a good report when he wakes up in an hour or so.


Saturday, April 29, 2017

Well That Was A Fun Break

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I had bigger plans for the Autism Awareness Month posts but life went very wonky.

Photo Credit
My brother, for those that don't know, got married last weekend. A few months ago his beautiful bride asked me to be one of her bridesmaids. I happily agreed and we decided just I would be going as it's half way across the country. Long story short, my brother really wanted my entire family there and we all ended up flying out to be with them. Longer story short, one of the reasons he wanted all of us there is they wanted all of us in the wedding. Yes, this means I got to see my handsome men in tuxes. You can't beat that as a wife and Mom.

Being the wonderfully Pollyanna, positive .... naive self that I am, I misjudged just HOW stressful this would be with my kiddos and had my plan of attack for packing medical supplies, how to handle the trip, etc all set out.



Yep, we all got sick before we left. I was supposed to head to my Mom's the weekend before we left because said brother was coming into town for his bachelor party and wanted one last visit with us. (bachelor party consisted of his groomsmen playing old vintage video games and poker together - lol)

Too sick.

Did I mention my bridesmaid's dress had been messed up by Nordstrom's and I needed to get back for what should have been a final fitting (should have is the operative word here)? I needed to get outfits for the rehearsal dinner for my guys. Yep, canceled.

So, I had to nurse us all back to health, including me, and get out the door within 24 hours of feeling decent enough to get out of bed.

This means I had to pack 4 suitcases, 2 large backpacks, and my purse all to carry on. I couldn't risk any of it getting lost, not with my bridesmaid's dress, shoes, rehearsal outfits and shoes, medical stuff,, emergency medical kits, and more. Nope, just not an option to check bags on this trip.

I managed to get it all done, have my third set of correction alterations done on my bridesmaid's dress (I was kidding when I said they kept messing it up and in the end it still was very wrong), have a mani/pedi, and get to the airport 2 hours early like we were told to do.

Only the flight ended up being 2 hours late.

We waited what seemed like an eternity (really only 4 hours) and finally boarded.

It was a wonderful weekend. We go to spend a lot of time with my brother since, well, honestly, he's the groom and only had to pick up his tux. The bride was busy with last minute planning with her coordinators, so we spent that free time with him.

We saw Grauman's Chinese Theater, took pics of my boys pretending to steal John Wayne's footprints in the style of Lucy and Ethel, saw the walk of fame and I took my picture with Vivian Vance's star, took pics with the Hollywood sign, went to Hermosa Beach and saw a school of dolphin playing right off the pier, and more. 

Needless to say, I am back and we hit the ground running. We were wiped out from our trip (got about 4 hours of sleep each night because of fun activities tied to the wedding). I had to shop for food (for some reason my guys still want to eat) and yesterday we started final work on the goat pasture (started, did not finish). 

Oh, and to throw another "relaxing" (read insanity) moment into our month, we decided I should go to our state's homeschool convention next weekend. Why plan? Just go with it. 

And THAT, dear readers, is why I took a bit of a break from blogging suddenly. 

Tuesday, April 18, 2017

Friday, April 14, 2017

Autism Awareness Month - Day 14 Our Story - Final Installment

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If you are just now joining us, please take a minute to catch up on our story thus far before heading into our final installment.

Part 1
Part 2
Part 3
Part 4
Part 5

Photo Credit
We left our last installment with a big question: NOW WHAT?

The first thing I did was play with my son. He was so young, structured learning would come later. I took him for walks, Daddy took him for long walks, and we just really got into nature and our world.

I also was in super research mode. I wanted to find good learning techniques for a child on the spectrum. But, during this research, I came upon people who talked about healing and Autism. Many weren't saying cured, just feeling better and getting skills back. This interested me so I ventured down that path. Again, I was taught news terms like biomedical, DAN (Defeat Autism Now), supplements, and more. This sounded too good to be true and I figured my husband would think I went off the deep end, but I figured I would present it to him.

Not only did he not think I had gone batty, he was fully on board before I was even convinced. He said it made sense to him. I found a group that had local Moms with kids on the spectrum and began to ask who we should see. One name kept coming over and over, so we chose him and made an appointment.

This M.D. spend a great deal of time with us asking so many questions. I walked out of that first appointment mentally exhausted. He didn't care about the labels as much as he cared about the symptoms. I liken it to a broken bone. If I tell you I have a broken bone, you know very little. You have no clue what bone is broken, how severe the break is, how long ago it happened, how much pain I am in currently, etc. You need to know more. We walked out with a few tests we needed to do (urine collection) and he drew a bunch of blood from our son.

We also walked out with one prescription. He said he normally waits for labs to all come back because he needs to see what's going on inside the body, but our son's symptoms screamed a need for B12. He prescribed MB12 injections to be given twice a week. We went home, waited for the script to come to our mailbox (we sent off to a pharmacy for them) and I got brave and gave him his first one. We waited for the labs to come back (took 2 weeks for some and 4 for others). During that time I kept giving him his shot.

10 days after starting his shots he was 24 hours past his 3rd shot and he and I were in the living room puttering around. He was at the sofa and I was sitting in the chair across the room. Out of nowhere I heard a voice. It was my little dude. He looked in my general direction and said, "Can we take a picture of that". It's like time stood still.

Did he just speak?

Did he really just speak a complete sentence?

Am I asleep and dreaming this?

If so, can I please not wake up?

It finally hit me that my son had just spoken, but I still wasn't sold. I asked, "what did you say?"

He said, very slowly, like I was an idiot that didn't understand the English language, "Can ... we ... take ...  a ... picture ... of ... that". He then looked across the room at an object (can't remember what it was) sitting on the end table.

I about hit the floor. My baby boy had just spoken. Not only did he speak, he spoke a full sentence and it made sense. I couldn't get to my phone fast enough to text my husband (yes, we used pagers back then). I needed him to call me immediately. I needed someone to share this with. He called me back and I think I screamed into the phone what just happened. He was shocked figuring I had just kind of misunderstood. I told him wait until he gets home.

He got home and my son turned and said, "Dadddyyy" when he walked in. That was it. He believed me. We told no one what we were doing. But through that week we would see various people in our lives and our son spoke in front of them. I remember my Mom looking at him and back at me many times and her say, "what did you do? what did you do?" Ha ha. We told her what our doctor had done. It was amazing.

We have been using biomedical interventions for over 6 years now. We have changed doctors a few times as our needs changed or our need for a more skilled doctor changed. But, one thing hasn't changed and that's our son's improvement. He's slowly but surely feeling better. We have lost almost all constipation, his eating is starting to improve, his eye contact is nearly normal, he engages at will and purposefully, he's reading and writing, he loves to draw (and is very talented in that area), and he feels a lot better. We have a long way to go but he has come further than I ever imagined that day when we lost him.

Through all of this I have learned a few things.

  • This is the hardest thing I have ever gone through. There are no words that can explain what it's like to have a child who is not healthy. We were blessed with two children, but we also have two kids with medical issues and special needs. The term roller coaster is nothing compared to what we have ridden. 
  • This has taught me more than anything else I have ever gone through. I had to reach down to levels of myself I never knew existed. I had to learn about strengths I never knew I had and weakness I wish I could have kept hidden.
  • When so many marriages break apart with even one child with special needs, ours has grown stronger. Oh, believe me, that wasn't easy. There were lots of short tempers, gripe fests, and tense times. But we came out on this side of it better for it.
  • I have learned more about God than I did the first 30 some odd years of my life. I have deepened my faith and passion for God because, honestly, there were times (days, weeks, months!) where His strength and His mercy were ALL the kept me going because all of my ability had been used up. The Bible verse that states, "I can do all things through Christ which strengtheneth me." (Philippians 4:13) is not just a pretty saying to put on a wall hanging. It holds so true and is never felt more deeply than when you have NOTHING left to give. 
I hope you have enjoyed this short series on how we came into this world and are now living in this world we call Autism. It was a ride I never wanted a ticket for, but one that has proven to mold us and shape us into the people we are today. I wouldn't wish it on anyone, but am glad to know I have fellow Autism parents who understand. I hope I can be that to at least one person during my life. 

Thursday, April 13, 2017

Autism Awareness Month - Day 13 Our Story Part 5

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If you are just joining me, head over to the first 4 parts of our story to catch up to where we are at right now.

Part 1
Part 2
Part 3
Part 4

Photo Credit
Decisions, decisions, decisions. If I thought it was hectic before Autism, it was triple that now. We had to figure out how to find a developmental pediatrician, meds, therapies, and wort of all school.

I started with the doctor. That seemed the most logical choice. I looked online and my husband and I found a child study center that seemed to have good ratings and also took our insurance. We made an appointment, took Charlie Brown in, and spent hours working with the DP. We came out knowing what we knew before, he definitely had Autism. Now we just had the formal diagnosis and a piece of paper stating that fact.

Second was the meds aspect. My husband and I discussed it and neither one of us wanted our very young child on the medication that the Neurologist prescribed. I tossed the piece of paper. We knew we could always get a new script if we changed our minds. But he was just so young.

During all of this time we had our second son and wow, what a whirlwind that turned into. With his issues from his second day of life until then, we were wiped out. Our brains were far, far, far from fully functioning, and we were tired from our older son's constant needs on top of his new brother's constant needs.

Here's where that comes into play: our decision, even before we were married, was to home educate any kids we had. We talked about it a lot before we said "I do" and had talked about it a lot while trying to have children. But with Autism thrown in the mix, we were told by our Neurologist he needed PPCD (public school preschool for special needs children). We were told this is what the next step was. I cried as I let go of the dream we had for our kids. My husband was so disappointed. But, we called the school to figure out what we needed to do to start this process. We started hearing terms like IDEA, FAPE, IEP, PPCD, and the list goes on. We learned that a medical diagnosis is not the same as an educational diagnosis and we would have to go through a lot of testing for our son during this process. We signed the papers, bought him a little backpack, school supplies, a cute little jacket, and lunchbox, and I walked him into his class on that first day hating every minute of it. Oh the teacher was kind with a sweet smile greeting him at eye level. The rooms were cute and welcoming. The other kids were excited for the new kid that had just arrived. The cubby he would use had his picture on it and his name. It wasn't that. It was that my dream and plan to educate him myself was shot out the window. I was confused. God had given me this desire only to know, before the desire was there, that it would be ripped away. Why even tell us to do this when you know it won't happen?

We went through the testing (by the way, he had Autism - LOL), had our ARD, and moved forward with school. Each day I took him to class, each day after lunch I picked him up from his little class. I would ask him what he did in school, he had no clue how to answer me due to his Autism. I watched him in class and it was fine but not like most think of when they dream of their child going to school I wasn't pleased with everything they did, neither was my husband, but what could we do? It wasn't like they were hurting him, being mean to him, or doing anything unethical. So, we just dealt with it.

Then, one day, I picked him up from school, put him in his car seat, started the 5 minute drive home, and he was different. He stared straight ahead, wouldn't respond to me at all (he didn't respond like a typical 4 year old, but he did respond to me all the time), and was just off.

Many years before I met my husband I had worked in a day care pilot program designed by Easter Seals. We were an inclusive daycare with children that had medical needs, special needs, and those who had no extra needs at all. The concept was to allow these kids, from birth forward, to come together in a daycare setting so that by the time they reached school age, special needs children were nothing new and everyone would see each other as just buddies. You wouldn't see the kid in the wheelchair, you would see Joe, your friend since infancy. Also, since we were in the Easter Seals facility, the children with any type of special needs could receive their therapies on-site with minimal disruption to their day and parents didn't have to take off work to help get them to appointments.

All of that is to say, I had seen this before. I will never forget that small boy that first showed me the face I was seeing in my son right at that moment. I was seeing an absence seizure (Petit Mal). I was scared. He had never had this issue before. I made an immediate call to my husband and then his doctor. We took him in and he referred us back to his Neurologist who, in turn, called for an EEG.

Nothing.

We went back to school and, a few days later, there it was again after he was done with school. This time I wasn't the only one who saw it happen. We called his Neurologist who had us come see him immediately. He suggested that the stress from school was causing these. Take him back, let's do more testing, we will figure this out.

On the way home my brain couldn't stop thinking. Stress from school ... causing seizures ... take him back.

We got home, I put him down for a nap, put our younger son down for a nap, and asked my husband to sit with me on the sofa. I was terrified to say what I was about to say, but knew if I waited I wouldn't be brave enough to get it out. I hmm'd and haa'd for quite a while before I finally said, "I know the doctor said we needed to put him in PPCD. I know we wanted to homeschool him and were told we couldn't. But, how could we do any worse? And, what if we could do better for him?"

Well, that was all my husband needed to hear. He had been thinking the same thing but was afraid to put more stress on me with all I was dealing with helping him and with our younger son's issues. He said "pull him out". That's just what I did. I left him at home the next day, almost skipped into the office at the school and nearly sang the words "I am here to withdraw my son from PPCD". I had a few things to sign since it was not the typical withdraw. We did have an IEP and such. They sent someone to get his things from his classroom while I signed a few forms and that was it. They told me they would always be there if we needed anything, and I walked out the front door with more joy in my heart that I had in months.

I came home, took one look at my son, and thought "now what".

Join me for the last part of our story where we jump into the "now what" of our situation.

Tuesday, April 11, 2017

Autism Awareness Month - Day 11 Our Story Part 4

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If you are just now joining me, check out the first 3 parts of our story before heading into today's post.

Part 1
Part 2
Part 3



We were left with one big question. What do we do now?

My first inclination was to make sure I was right. I knew I was right, but I am not a doctor and my thoughts hold no merit with insurance companies or the medical community. I found a Neurologist within about an hour drive of us who others recommended and made an appointment. My husband couldn't get the time off, so I went by myself.

I took my little boy by the hand, walked into that appointment, and laid out what I had been seeing. He listened and then started a battery of tests. I watched as he played these games with my son, knowing there was a reason behind each one. Finally he sat down, closed his box of fun things, handed my son his stethoscope to play with, opened his file (they still used paper and pen then), and looked me in the eye. He said, "your son has Autism". He then stopped and waited for me to digest his words. The thing is, I had digested them weeks earlier. I knew what my son had. So, without skipping a beat I said, "OK, so what do we do next".

It's like he couldn't comprehend that I wasn't a mess. But I had already found my resolve (for the most part) when I first read those words on the screen weeks earlier. I just needed to have a team to help me help my son. He said it again as if I didn't understand his words. I told him I understood and what did we do next.

He gave me a short list:

  • Enroll him in public school PPCD program (preschool for children with special needs)
  • Take him to a Developmental Pediatrician for the full Autism testing program
  • Give him this medication for his ADHD tendencies
I walked out with that paper in my hand, the prescription, and my son's tiny hand in the other. As I left the building it hit me, this was my new normal. And I cried. I walked down the sidewalk crying. It wasn't the ugly tears I expected, more of a soft letting go of what I thought life would be like. By the time I got to my car it was over. I had found my spine and it was time to get into warrior mode. 

I started my car, pulled out of the parking lot, and called my husband with the news. We had a lot of decisions to make and not a lot of time to make them. 

Monday, April 10, 2017

Autism Awareness Month - Day 10 Our Story Part 3

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If you are just joining me, please take a moment to check out Part 1 and Part 2 of our journey into Autism.
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When last we visited, I had made an appointment with our pediatrician to talk about what was happening to our son. I walked in with a very different child than he had seen the last time. This little boy didn't look at all like what he had declared "healthy, happy, on track developmentally, and advanced in his speech".

We spent a few minutes discussing our concerns. He did a check up (heart, eyes, ears, nose, etc). Then he turned to me and said, "you are pregnant. He's reacting to that. He's jealous of the new baby. It's very common."

I about hit the floor. It's like someone stopped the world and nothing was moving anymore. I couldn't believe what this man was telling me. This man was a Christian, a pediatrician, and someone I had come to trust. I finally started to breathe again and said, "but we haven't told him we are having a baby". I wasn't showing. We hadn't bought so much as a baby wipe for the new little one. The only people we told were called AFTER he went to bed because we wanted to make it a big deal once I was out of the woods, so to speak (this was after a loss of a baby very early). He told me, "he knows, it's jealousy, give him some time and extra attention".

Extra attention? I was a stay-at-home Mom with one single child. If I gave him any extra attention it would require me not sleeping. He was all I gave attention to most of the day. I left completely bewildered. I didn't understand what was happening.

I came home to an anxious husband. He asked what happened once he returned home from work. I told him what the doctor said. His words were, if I recall correctly, "well that's an idiotic thing to say". Sigh. I couldn't disagree with him there.

That's when research me was born. I had to figure out what was happening to our son and I had to figure it out fast. At this point we had put baby gates in all of the windows of our home because he hit them so hard when he ran we were afraid he would either break the glass or pop them out of the pane. My calm, cool, sleeps well, speaks well, knows all his letters and their sounds toddler was gone and I had to figure out why.

I researched any time I wasn't with him. If he napped, I researched. If he slept, I researched. If my husband took him to the park to play, I researched. One day as I was online I got so frustrated and just typed in every single issue he had. I just put it in the search box and hit enter.

That's when my world was rocked to it's core. What came up on the screen was article after article, study after study, and page after page with one common theme ... AUTISM.

The more I read the more I knew this was it. It made me sick. I felt like all the air was sucked out of the room. How could my sweet, smart, funny, lively, talkative little buddy have Autism when he wasn't like this three weeks earlier? It made no sense. But, I couldn't deny what I was reading. It was there in black and white.

I had to tell my husband. When he came home that day I sat him down and said, "(Charlie Brown) has Autism ... I think." He looked at me like I had three heads. He told me I was wrong. He couldn't have Autism because he was smart (oh, how little we knew). He said he wasn't sitting in the corner rocking (how VERY little we knew), and he had done some of these same things as a child (no he hadn't). He was in denial. I was in "let's rock this and fix this" and he was in "not my son". I didn't know what to do.

Finally I gave up trying to convince him and retreated into research Mommy. One day, while our little man was sleeping, I was reading about Autism and found a link that had the standard list of symptoms all in a nice format. I told my husband, "listen to this" but didn't tell him what I was reading. I just started to list off everything on the page. Once I was done he said, very loudly, "that's it!!! That's what (Charlie Brown) has! What is THAT?"

I didn't know what to do, so I turned to look him in the eye and said, "that's the list of symptoms for Autism".

It hit him like a ton of bricks. His mind was racing and I could see the panic in his face. I just kept quiet and waited for him to digest what I had said. Finally he spoke, very quietly, and asked me, "OK, what do we do now?"

What we did now will be my next installment. I hope you will join me.

Friday, April 7, 2017

Autism Awareness Month - Day 7 Our Story Part 2

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I started our story a few days ago. If you haven't read the first part yet, check it out. Our Story Part 1

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Back to the email. I finished our email to family updating about how much he had grown, how he did with his shots, what the doctor said about his development, etc. After sitting down for a rest (I was very, very newly pregnant), it was time for our little man to wake up. I went to get him when I heard him cry, changed his diaper, and sat him down to play with some toys. It wasn't long before I started to notice he wasn't talking to me. He normally was quite chatty after a nap. I didn't worry, figured maybe he was tired after an eventful morning, and went about our day. As it got later he still wasn't talking ... at all. I tried to engage him, but no words.

My husband came home from work and I didn't say anything, I wanted to make sure I wasn't just off my rocker. He started to ask me if Charlie Brown was feeling OK because he wasn't talking. What we didn't know was that the words he spoke before I put him down for a nap would be his last words for a long, long time.

We all woke up the next day and that's when the craziness started. He started his morning with breakfast (a fitful breakfast) and then proceeded to bang his head into hard objects (the wall, the TV, whatever he could find). This freaked me out completely. By that afternoon the running had started. Hours and hours and hours of endless running. He would only stop if he ran into something like a piece of furniture, a wall, a door, a window, etc. Then he would only stop long enough to change directions. All day it was silence, head banging, and hours and running. This was our new norm. I didn't know how to get him to stop.

I finally decided we needed to speak to our pediatrician. I made an appointment and went in. That would be my first medical world shock, but not my last.

To be continued ...

Tuesday, April 4, 2017

Autism Awareness Month - Day 4 Our Story

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Our story is long, growing longer each passing day. It all starts with our oldest son. It took us a long time to get pregnant. When we finally saw those two pink lines we were over the moon excited. This child was very prayed for and very wanted.

When the big day came to have our little man, I was nervous but ready to meet him. He came into this world with not much of a bang, except in our own hearts. He cried just a tiny bit, settled nicely once he was swaddled, and let Mommy kiss him all over his face. (like he had a choice)

As they nurse took him to the nursery with my husband in tow, she said (out of earshot to me, not on purpose just where she noticed the issue) "I think we will stop by the NICU to just have a look at his breathing". He had meconium aspiration (very simply put, he pooped in the womb and then breathed it in) which lead to Transient Tachypnea of a Newborn (AKA breathing problems). This all lead to a 10 day NICU stay trying to get him to breathe properly, be able to suck, swallow, and breathe at the same time while feeding, and to keep his temperature where it needed to be. He also thought it would be fun to throw in a bit of jaundice just to keep us guessing. We finally got to take him home and it was like a dream.

He was the type of baby that made you want to have a dozen. He ate well, had a great temperament, smiled easily, engaged us well, and slept so well at night. We used to joke that he even cried politely. Oh, he let us know when he was hungry or wanted a diaper, but ... well ... you just had to hear him cry. He met his milestones, was advanced in his speech, could name all the letters of the alphabet at 21 months old (my aunt can share her favorite Charlie Brown story with you about this) and was just a fun kiddo to raise. Guess that's why we had another one. (ha ha)

At 2 years old we did something that was completely uneventful in our lives. We took him to his 2 year old well baby visit. We did them each time we were supposed to, so this didn't phase me at all. I actually loved getting the paper they gave you afterwards that said how big he was, how he was doing on his milestones, etc. I always emailed family once we got home. This day wasn't any different. We came home, had some lunch, I put him down for a nap, and off to email how our little buddy was doing. I had no clue my life was about to change in a massive way, a scary way.

(Part 2 Next Time)


Sunday, April 2, 2017

Autism Awareness Month - Books

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I wanted to do something different this year. Normally I share our story (and I will later), but today I am going to share some books on the subject. I have read each of these and have gleaned at least one thing that made them worthy of a recommendation. It doesn't mean I agree with everything the author said, but there were some points made that I feel can help parents and those living with people on the spectrum.

Dr. Sears is a good place to start. It's basic, but it doesn't pretend to be anything other than what it is, a starter book for those new to the spectrum. I disagree with some of his thoughts, but there is some solid information there for those new to the scene. 



I could go through half of this post about this author. Let's just say, if Dr. Temple Grandin has written a book on Autism, get, read it, understand it. She IS a person with Autism, so she has an insight that so few do. If you ever get a chance to hear her speak, take it. It's wonderful to see how an adult on the spectrum interacts and communicates. Her writing will shed a bit of light on that, as well. 

Not a Temple Grandin book, but good for kids and the author was aided by Dr. Grandin. It explains some of the unwritten rules about life to kids who so often don't grasp them. 

This book is quite different as it is the first in my collection of how to help those on the spectrum. It shares about a program called "Brain Balance" and there is a lot of merit to this program. I have watched children do exceedingly well and have incredible successes after using a quality brain balance program. 


These two books are, hands down, two of the most important you will have in your Autism library. Sensory issues so often plague our littles and these two explain the why and how to help of SPD. It gives in-depth things you can do, and a LOT of them to help with the sensory side of Autism. 

I had the opportunity to hear Dr. Bock speak 2 years ago. I should just say "get this book" after hearing him. But, with you not being there, it's not enough. This gets into the meat of WHY we are seeing a rise of the 4 A's (Autism, ADHD, Asthma, and Allergies) and how to help protect and heal your kiddos. 

This book has, single handedly, changed our younger son's life. The seriousness of what allergies can do to a child's body and mind is, well, mind blowing (no pun intended). I never, ever would have believed what food, chemical, and environmental allergies could do to the brain and body if I hadn't seen it myself. I will be sharing more on this book later, but for now, I highly, highly suggest you get it and it's sister book "Is This Your Child's World". Dr. Rapp is, as far as we are concerned, a genius. 

Saturday, April 1, 2017

Autism Awareness Month - Day 1

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Autism is not a one size fits all diagnosis. In fact, most medical issues are not a one size fits all diagnosis. If I tell you I have a broken bone, what does that tell you? It tells you some bone between my skull and my toes is broken but not which bone, or to what degree. It's a general term. Autism is the same way.

Kids with Autism can't speak.
Except many can.

Kids with Autism have low IQ.
Except many don't.

Kids with Autism rock back and forth in a room.
Except many don't stim that way.

Kids with Autism wear diapers their entire lives.
Except many potty train.

Kids with Autism have one great almost savant like gift.
Except so many don't.

This is why the quote from Dr. Shore is so vital. If you have met one person with Autism, you truly have only met one person with Autism. You need to get to know a person, any person, to find out who they are. The same thing goes with people on the spectrum. They are individuals who live out their Autism in their own unique way with their own unique manner of presenting with their symptoms.

Today is the first day of Autism Awareness month and I will be sharing a lot more about this unpredictable world of Autism our family deals with. We didn't ask for it, but here we are helping our son each and every day. He is a huge blessing to our family, Autism or not. He isn't his Autism. His Autism isn't him. He's our sweet little boy that we love beyond words. We all have struggles in life. This is his.


 

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