Sundays (or a week) with Gage at Kiawah Island, South Carolina

We travelled by car with my parents down to Kiawah Island Golf & Tennis Resort so that Jason could spend 2+ hours playing tennis with the club pros everyday, as part of his 40th birthday gift.  Kiawah is an interesting place.  I didn’t realize before we went that it was a popular alligator hang out spot.  These signs were everywhere on the island…

k1  IMG_1344  We saw three in our time there, one in the water on the golf course!  Needless to say I was cautious when walking by myself or with just me and Gage.

On the drive down we spent a few hours in Charleston.  I would’ve liked more so maybe we’ll have to plan a second trip.

IMG_7668  IMG_7660Gage wanted his picture taken with EVERY cannon in Battery Park, but I fell in love with the trees.

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We had some lunch at the Southend Brewery & Smokehouse and headed for the pier where Gage found this fountain…IMG_7717. Our time in Charleston was fun, but too short.

Kiawah Island was lovely (sans the alligators) and we had a relaxing week staying in one of the villas. Gage built sandcastles on the beach, swam with Daddy, and just chilled out.

IMG_1358  k3   IMG_7747

The restaurants on the island were all great and able to handle Gage’s allergy restrictions.  Jason and I went out for a date on our last night there and this was out pre-dinner spot.  Not bad, right?

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If we are friends on Facebook you probably saw that Gage had some carsickness both coming and going but this was the backseat when we were almost home from the long drive…IMG_1462so the trip was a success 🙂

Now on to trying to catch up with seven days of responsibility neglect!

 

 

Sundays with Gage – Kindergarten options

Have you been in a kindergarten class lately?  When Gage was first diagnosed as having mild/high-functioning autism all of my time and energy went into helping him beat the diagnosis and be able to go through school with his peers.  A few weeks ago I visited the school he would be attending and the classroom he would most likely be in and my view totally shifted.  I was appalled, quite frankly.  Twenty-seven students in a classroom where they are sitting in a circle listening to the one teacher or at the tables doing worksheets for five plus hours!  They had one hour a day for lunch and recess.  I walked out of the 2nd ranked school district in Ohio knowing that there was no way I wanted my 5-year old in that environment.

So, I made a list of the things I most wanted for Gage and went from there.  I wanted a small class size, ability to move,  play, and structure.  He’s a smart kid and I don’t worry too much about him in that department, even if some of the harder concepts will need to be taught one-on-one.  In Ohio, if you have a child on the spectrum and you pull him from the public schools you get $27,000 to use at other autism-friendly places.  The company where he gets his ABA and the place he gets his OT are both on the list so I did (and still do) consider homeschooling and using that money for those two places, where we easily pay them that already.

He got accepted to the first school we applied to, a school that accepts only kids who learn differently.  In all honesty, I don’t know exactly what that means, only that they all have at least average IQs and that they only have 10-15% of students on the spectrum.  Get this, they only accept 6 kids into their kindergarten class!  If a kid has to move he is not made to feel bad about it (important because Gage has a hard time sitting still for a long time, as do most 5-year-old boys)  and the class has the kids move every 15-20 minutes.  There are play areas all around the classroom and there is so much structure. They all have access to their own ipads in the classroom and computer, art and music once a week.  There are so many great things about this school…but there are no typical peers.  I’ve visited twice and the kids seemed great, well-behaved, like regular kids.

I’m still going to look around (my favorite place only has a wait list right now, but it is similar to the school he was accepted to) but feel good about the option we have. It’s not what I thought we were working toward, but when I visited a public kindergarten class, I knew I didn’t want that, for sure.  Speaking as a mom who has an education degree I am very disappointed in what we are doing to our kids at such a young age.  Even if Gage weren’t on the spectrum I would be looking at homeschooling or private schools and I always thought that was a terrible choice.

I was a public school girl all the way, even college.  What about you?  Any homeschooled or private school peeps out there?

 

Gage, life & quiz

Life has been kicking my butt. After Gage’s successful scope we were back at square one.  His behavior was getting worse at home and school and something had to give.  So, after some investigating, I scrapped the SCD diet last Monday and within days he was a different kid, well, back to his loveable self!  We are now on a new diet that I may detail later, but it seems to be doing the trick.  All of of this to say that for the last few weeks all I’ve wanted to do is sleep. (seriously, Jason was home yesterday and I took two naps!)  My mind and body are tired of trying to figure out an ever-changing puzzle.  So, I’ve been napping a lot and trying not to feel guilty about it.  The stress is tough and taking some downtime is a good  thing, right?

As tempting as it is to crawl into bed and dream the world away, life goes on.  New diets mean new learning and planning.  A good scope means finding someone else who can help us find answers.  Vacations and getaways must be planned.  Birthdays and anniversaries must be remembered. Next year school decisions must be made. New therapies must be decided on.  Books must be read, doctors must be found and seen (we have an appointment in Columbus next week). Parties must be attended. Field trips must be attended (seriously, tomorrow is the 3rd one this year aleady). Five year old boys need to play with their mamas. Husbands must be appreciated.  Blogging must be done.  See that last one?  Obviously, that is the one that doesn’t actually get done but is the one that can alleviate stress if I let it.  It’s a checkmark on my to-do list that I actually enjoy doing, but I haven’t been taking time for it.  So, here I am oversharing and I hope that you’ll still come back tomorrow when I’m back to talking about fun stuff.

What do you do when life seems to be getting the better of you?  Yoga? Meditate? Travel? Cry? Punch someone?  I need some good ideas! 

Oh, the Wednesday Quiz will be posted later today or maybe even tomorrow.  I’m not going to stress out about it 🙂

 

 

 

Sundays with Gage – Scopes, Stress & a Tip

Because of Gage’s ongoing issue with what we thought was acid reflux, he had an upper scope done on Wednesday and I was freaked out about it.  A couple of the doctors that we’ve seen this past year told me not to do it, one even citing the new research on what anesthesia can do a child’s brain, especially “sensitive ones” (said as she nodded to Gage).  I already knew enough to be worried, but once we decided  that we couldn’t wait any longer I did my research and talked to the other moms in my online group.  And when I heard from the anesthesiologist I sent her a few articles that I hoped she might take a look at, lol.  Yes, I am that mother!  Here are the three I sent her

(http://www.autism.com/pro_anesthesia

http://www.mitoaction.org/files/Risk%20of%20Anesthesia%20Regression%20(2).pdf

http://www.mitoaction.org/files/Anesthesia.pdf)

and she not only responded within a day but we exchanged more emails and she was very patient with me.  Here’s the thing, there is always a risk for regression in people on the spectrum after anesthesia. This is from one of her emails, “I want to make sure you understand that despite our best efforts, he could still have complications and possible regression of his ASD.”  I know some people were wondering why I was so worried about a routine scope, but there it is.

There were actually more health concerns that we addressed (mitochondrial issues being one) but I won’t bog this post down in medical talk.  I do want to say that if you know a child who will be using anesthesia, even for something routine, there are precautions you can take to make it safer.  Sometimes you don’t even know kids have a mitochondrial issue until something bad happens.  Feel free to check out the above articles or shoot me and email.

Anyway, the procedure was a success in all ways possible.   It took 15 minutes, he woke up five minutes after they wheeled him back to us, and has been his sassy self ever since.  They saw nothing with the camera and all the biopsies came back negative so she told me to take him off Zantac, woohoo!  We have a follow-up next week to see where we go from here, but I’m guessing it’s going to take more investigating by me to figure out our next move.  A mother’s job is never done and while I wouldn’t have it any other way, sometimes I wish it were a bit easier  🙂

IMG_5719WaitingIMG_5721Blood pressure check (good thing they didn’t check mine!)IMG_5727Getting instructionsIMG_5732Daddy got to go back with him until he fell asleepIMG_5734And 30 minutes later. He did great.  After we got home I told him he had been a big boy and he said, “I know. That’s what I was trying to be.”

 

2015, A Year of Sundays with Gage

I didn’t write about Gage on here as much as I would have liked, but did share as the time allowed.  Can you believe he turned 5 this year?!  He had some health issues so last month we started the SCD diet and I delved more into the world of biomed.  He started full-day Pre-K and loves it.  We did some fun activities and learned about 5 states and will continue that next year.

My 5 favorite Gage pics from the blog this year…

IMG_1752[1]last Christmas in Michigan

snowmana snowy winter

IMG_4149riding horses

IMG_3218[1]one of his favorite friends

IMG_2023train postcard collection

Favorite Gage post of the year was this one, Mothering a special kid can be lonely and then sometimes it isn’t.  It’s a little more maudlin than I usually let myself get on here and it was refreshing for me to show some autism honesty.  I try to keep things upbeat and I don’t see that changing, but in order for the picture of Gage to be a real one then sometimes the hard stuff has to be said too.  And I really appreciated the response I got from all of you.

I plan for much of the same in 2016 with more posts if time allows.  Thank you all for letting me share Gage with you!

Sundays with Gage – the Specific Carbohydrate Diet

A few weeks ago I reviewed this book and talked about our intention to do it.  Well, I’m a week in and Gage is on day 4. This diet is hard! It essentially starts as an elimination diet so you start with about 6 things to eat (all having to be cooked for 4 hours through stage 4) and add one fruit or vegetable each day.  After 3 months we can try adding nuts (nutbutter, nut flour) and then beans soaked for 12 hours.  It’s a healthy diet but one that will be difficult to do forever, I’m setting my sights for one year.  Eventually I can add in dry red wine, my favorite anyway, so I’ve got something to look forward to!

Let me tell you a little about my experience mainly because I can accurately describe what I’m feeling and with Gage there’s a lot of guessing going on.  I made a food chart for each food as I introduced it and then wrote the first two stages after the Intro so I could plan accordingly on the frig.

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Then I spent most of the hours in each day in the kitchen and that is NOT an exaggeration.  I’ve had to cook two chickens to make the needed healing broth of this diet (4 hours to cook and another hour to debird and put away).  This is by far the messiest and grossest part of the cooking.  I convinced my mom to come over and make applesauce with me since I’d never made it  and it came out beautiful and delicious.

IMG_4766IMG_4769I’ll admit that my attempt to make pearsauce yesterday didn’t turn out as great.

I ate a lot of thisIMG_4762and thisIMG_4780 (obviously I’m a work in progress when in comes to eggs, this is my first one where I actually kept the yolk intact and I’ve since done it three more times).  Everything must be made from scratch.

I felt pretty sick on day two and spent a good portion of the afternoon in bed.  I had a blinding headache off and on for the first four days and I had ZERO energy those first few days.  Even now on day 8 my energy is at about 50%.  But I’ve never really felt hungry. All that protein is filling.

Ready for exciting part? I’ve lost 7 pounds!  Not even trying, but there it is.

Okay. So Gage started Thursday after school and I did have to allow a few things from stage one (homemade applesauce and bananas) to get him through.  He cried about eating stuff he didn’t want and not having snacks or chocolate, but he was doing okay.  Then yesterday morning he woke up, ate half a banana, vomited, went to bed, vomited some more and pretty much spent 8-2 in his bed or ours preferring dark and quiet.

IMG_4784 I read that this might happen and that it was actually a good thing since it meant that the bad gut guys were detaching themselves, but I still worried.  Then I got him to keep some applesauce down and he bounced back.  Like really bounced back becoming chatty for the rest of the day and actually eating chicken/squash broth soup with carrots!  Seriously, I didn’t really think that could happen.

This diet is going to change my life tremendously.  I will now have to spend more time in the kitchen than I really want to and forgo eating out.  I made Gage a promise that we’d evaluate how things were going at the six month mark and see if we thought it was worth it. There are only two things that would make me change my mind about that, Gage losing too much weight or the docs finding something at his scope in January.  Wish us luck!!!

 

Sundays with Gage – a new era

Gage started all day Pre-K last month, 6.5 hours 4 days a week, and he is doing well.  He has one class in the morning and one in the afternoon, so two different teachers and friends, and he seems to have adjusted.  He loves eating lunch in the cafeteria with the big kids and has even managed to embrace ‘rest time’ on his cot, a thing I cannot even picture since he has not had a nap in well over a year (oh how I miss those naps!).  He is learning to draw new  things and his morning class even cooks once a week, usually something that Gage can’t eat.  The food is the bane of my existence right now.  I have to send in snack for both classes and send his lunch and if I want him to be able to cook I have to send in alternative ingredients.  I admit I’ve been grumbling about them cooking in class, but he has turned into my little helper at dinnertime, always wanting to help me with a recipe, so I should probably quiet the complaints.

So what have I been doing?  The first week I cleaned house and waited for a call from the teacher to come pick up Gage… which reminds me of a funny story I have to share. During the third week I went to pick him up and kids were filing out of the school with their class and the alarm was ringing.  After 10 minutes I finally went and found a teacher and asked what was going on. She said they weren’t allowed back into the building until the firemen had come and checked the building and turned off the alarm and then she said the words that had been what kept me close to the phone that first week.  She said that it had been the second time that day that a student had pulled the fire alarm.  I nervously laughed and said, “I hope it wasn’t my kid.”  She said the first kid had been sent home – I later find out it’s Gage’s friend from his morning class. LOL.  I never did find out who the second kid was but as long as they didn’t catch my kid I’m good.  He still thinks it’s funny that his friend pulled the alarm. I would be more worried about this if I didn’t know that he hates the piercing sound.

As Gage has gotten more comfortable at school, I have easily adjusted to my free time.  That second week I think I came home and took a nap every day. I’ve started decluttering the house, cooking new recipes (none of which Gage really likes), and planned play dates for me and for Gage 🙂  To put it simply, I am in a very good place.  I feel more relaxed and myself than I have since before Gage was born.  I can credit Gage’s school for much of my comfort.  Some of these aides or class therapists have known Gage for over two years now.  He is in very good hands and I get to let my body decompress.  I think I am going to like this school thing!

A few pics of this first month of the school era

IMG_4112First day of school!IMG_4253His OT intern left after 4 months 🙂IMG_4305We’ve had a few playdates.IMG_4149And he’s still loving horseback riding!

Traveling the States with Gage – Indiana and Arizona

I had the best of intentions of working our way through many states this summer, but as  the first days of school looms we have managed only two.

fpoExploring the States:Arizona, the Grand Canyon State

This was the first state that Gage chose himself and I have no idea why, but was happy to see him take an interest.  We started by reading through the book and then I chose some  5-10 minute activities over the three days.  My goal is really just two activities  for each of the three days and then a book or two.

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  1. Traced the state map, marked the capital and put on some stickers having to do with Arizona (thank you Jill!).  Wrote Arizona.

2. Colored the state flag, state reptile (ridge nosed rattlesnake) and state flower (cactus blossom).

3. We made our own cactus blossom using this pin as an inspiration.  We used a brown paper wine bag since it was brown and we could cut it to make it stand up.  First we painted his hand green (he looked very Hulkish), then he used the dot paints to make the flowers.  After the paint dried he added the ‘ouchies’, wrote his name at the bottom (any excuse to get him to practice), and he cut along the line I drew.  Wha-la!  a perfectly lovely cactus blossom.IMG_3832IMG_3836IMG_3843

4. Since the state coloring page included a snake we used this pin and made our own snakes.  Here’s Gage making his.  This activity is great for fine motor. First he cuts the strips, then he has to make a chain.  He had to concentrate but he did it.  We drew on eyes an a tongue and had snake fights.IMG_3899IMG_3903IMG_3905

5. Kay sent me this great book and it’s an Arizona spin on the Three Little Pigs.  fpoThe Three Little Javelinas was PERFECT for learning about Arizona.  Javelinas are sometimes called wild pigs, they are related to swine and hippopotamus and instead of them running from the Big Bad Wolf they are on the run from a coyote.  The two brothers and one sister use traditional southwest things for their three houses; tumbleweed, sticks from inside a cactus (called saguaro ribs), and adobe bricks.  Along the way you learn a few Spanish and Native American words and about how the traditional things are made or where they come from.  The illustrations were wonderful and Gage loved it!  So did I – thanks Kay!  32 pages and perfect for ages 3-7.

fpoExploring the States:Indiana, the Hoosier State

I found myself very uninspired by Indiana when we did this state so we didn’t do as much as I would have liked.

  1. Traced the state map, marked the capital and wrote Indiana.
  2. Colored the state flag.
  3. Drew lots of racetracks.  IMG_3036
  4. Watched the movie Cars.IMG_3066
Yes, I know, lame.

Keep sending me ideas for your state – especially book ideas!

Our Michigan activities. Ohio activities. Pennsylvania activities. West Virginia activities.

Sundays with Gage – late addition

This summer has officially kicked my butt and it’s still a month until school starts.  I knew I wouldn’t have much time to myself this summer since I haven’t replaced any of Gage’s ABA therapists. They came to our house for 2 hour sessions so I would have  time to do a load or two of laundry, read, write a blog post or visit your blogs 4 times a week. No more of that.  The summer has been full of medical mysteries and mishaps so I’ve spent lots of time researching and in doctors offices or hospitals.  I don’t usually share these things but I do share things about Gage and this is how life goes with a 4-year-old.

First, let’s start with when I first noticed this in June…

IMG_3635[1]Do you see the bump behind his right knee?  After an x-ray and ultrasound he was diagnosed with a Bakers Cyst.  Might get bigger and might not go away until his late teens.  It was a long 4 days from first seeing it to a benign diagnosis.

Then almost 3 weeks ago Gage started having acid reflux/hiccups all.day.long.  Seriously, from when he wakes up until he falls asleep.  He says they don’t hurt but they are taking a toll on his mood.  Doctor said to put him back on Zantac and after an ER trip last night because the reflux/hiccups were so bad when he went to bed that he threw up, another doctor said to try Prilosec.  Oh, and he took x-rays too.  The medical protocol is always pharmaceutical to mask when the problem might be.  Both of these doctors literally shrugged when trying to explain what might be going on.  Gage has a complicated and mysterious gut that I have spent hundreds (thousands?) of hours trying to puzzle out and I hope I can find an answer soon because it is frustrating not be able to help. (We did try the Zantac for 3 days but it was no help)

And if we’re friends on Facebook you might have seen that Gage was at nature camp this week when one of three boys going through the woods together stepped on a hive in the ground and Gage got stung 5 or 6 times by yellow jackets or hornets.  I am lucky that I did not get pulled over or cause an accident the 15 minutes it took me to get to camp!  He was fine, eventually, but the trauma of it caused lots of crying every time he talked about it.  The kid has guts though and looked at me like I was crazy when I asked if he wanted to go back the next morning.  No fear in my guy and he was back the next day walking through the woods.

I don’t know if I’ve properly expressed how much stress I’ve been under this summer (Gage actually seems to be handling it all fairly easily by comparison!).  I have visited a few blogs and will keep visiting as time allows, but just wanted to let you all know what’s going on here in Cleveland.  Jason did take me to a nice dinner and comedy club on Friday night so there are always bright spots 🙂

Sundays with Gage – Autism One

A few weeks ago I had the good fortune to attend the Autism One conference in Chicago.  I was there for 3 1/2 days and came back with a renewed zest to heal Gage.  This conference is for people who reject the notion that autism is a strictly psychological condition and treat it as a medical one.  I’ve been on board with this approach for a year and a half and was ready for a crash course.  I can’t cover everything I learned or already knew (by the way, this is why there are so few autism posts on here – I start writing and the post becomes unmanageable) but using Oprah’s book as a guide, I’ll just tell you the things I know for sure.

1)Kids on the autism spectrum are being recovered.  I spent most of Wednesday listening to mothers who healed their kids and they are no longer on the spectrum.  Do you want to know what the secret is?  They all started by healing the gut.  The brain issues that get a kid diagnosed with autism start because the gut is compromised and toxins spread to the brain.  All of these mothers started with a casein/dairy free diet, no corn, soy or GMOS, and little sugar.  With this new diet they also added supplements to heal the stomach and for some this is all it takes to be on the road to recovery. The trick is to find the correct supplements and diet that works for your kid.  Because every kid is different and not every one is recovered.  A note about the diet – once the child’s gut is healed some of these foods may be added back in.

2)Traditional doctors are of very little help.  Most of the doctors who are DAN or MAPS doctors (docs with biomedical training for kids on the spectrum) now were traditional MDs who had a child with autism that set them off on this path of what kids with autism have in common medically.  It’s quite a bit actually.  Gage’s pediatrician has been of no help whatsoever, you will read more of her when I talk about vaccines.  If a parent wants a recovered kid most of the work is on them.

3)Leaky gut is not something traditional doctors believe exist. And because they don’t believe it, they don’t see how things like toxins, medicines, vaccines can contribute to autism.  I did not say cause I said contribute.  Without the leaky gut these things could be eliminated from your body without a problem.  So, is the leaky gut to blame?  I won’t get into the complexities of the leaky guy here but I’d be happy to answer any questions if you have them.

4)Some of the talks were above my pay grade.  I went to one about Vitamin B numbers being off with kids on the spectrum and I was ten minutes late.  Those ten minutes must have been very important because I sat there for 5 minutes and had NO IDEA what he was talking about.

5)I’ve not talked about vaccines on this blog because it is a lightning rod for vile, disrespectful comments and if that happens I’ll turn the comments off.  Feel free to email me if you want to talk about it.  Okay, there were lots of doctors talking about vaccines at this conference and I listened to two panels.  They pretty much expanded on my own views after the past year and a half of research.  Let me tell you the one thing I learned.  Nine months after Gage ended up on a ventilator and a dairy allergy was put on his medical record our pediatrician gave him a vaccine with casein in it without consulting me.  This ushered in another round of severe head banging and it is also when he was diagnosed with PDD-Nos. Did his doctor know that the vaccine had dairy in it?  I don’t know.  As a parent it is your responsibility to do your own research. There are kids who should not receive vaccines at all and there are kids who shouldn’t receive certain vaccines.

6)Medical testing is vitally important and insurance rarely covers it.  On the same note, traditional therapies are not properly covered either.  Gage gets 20 ‘free’ OT and Speech sessions a  year.  These ‘free’ session cost me $60 co-pay every time.  Thanks insurance, you’re a real help.

7)There’s more that I’m forgetting right now, but I’ve bored myself already!  If you are interested in checking out any of the sessions (maybe I’ll recommend some next time), here’s a link to all of the videos .

I’ve been asked a few times over the years (even just yesterday) what a parent should do if their kid is diagnosed and I always say to start with a gluten free/casein free diet.  It is not easy and to do it correctly the gluten has to be out for at least nine months, but it is the best place to start.