Tuesday, December 30, 2014

Weekly Progress Video #27

The last video of 2014! Thanks so much to everyone that has been a part of our journey so far…you have no idea how much you've helped, if only to help me maintain my sanity so I can keep pushing on! :)



Here's to a wonderful 2015!


In this video:
*Our third neurologist visit, one year since official diagnosis
*Had a good Christmas!
*I jinxed myself on his great sleep

Friday, December 26, 2014

Bubu's OT Progress

I recently received the third Occupational Therapy Evaluation Report. The first was his initial evaluation to set his goals for therapy. This one and the previous one are updates to those initial findings and progress on the goals set.

As promised, I made a video giving a rundown on the initial report and the progress made since, plus goals still in process.



Please click here if you cannot see the video above. And feel free to comment if you have a question regarding evaluations, what to expect, etc.


Tuesday, December 23, 2014

Weekly Progress Video #26

A VERY short video about the last few days…



I'll be back on Friday with a video on his OT reevaluation. I hope everyone has a great holiday and a great rest of the week! :)


In this video:
*Momma is sick!
*Doing great with the yes/no PECS
*learned to open doors!
*great sleep in spite of cold
*last week of 3 session days
*sporadic therapy appointments due to the holiday and our own appointments

Monday, December 22, 2014

Bubu at Disney World

We recently went to Disney World for the first time since Bu was officially diagnosed…and certainly for the first time since we've gotten to know about Bu's specific needs! Here is some information about the accommodations we were able to receive, and ways we helped Bu enjoy his trip.




Here's some stuff you should know to clarify what's said in the video:

1) Bu is 3 years old, he's on the GFCFSF diet, and he's on the autism spectrum. He doesn't speak (yet), is very sensory seeking (except for touch/tactile), and has hypotonia, which is low muscle tone. He is getting better with all of these things, but he cannot stand or walk for very long without getting fatigued, so he is carried or strolled more than a typical kid his age.

2) Bu gets his supplements several times a day in his "juice", which is typically a homemade, organic fruit-and-veggie puree mixed with water. This is why I personally bring organic baby food pouches or jars/tubs with us to the parks.

3) I took the supplements in "pill organizers" to the park, which was then put in my backpack. If we'd have stayed longer, I might have taken our refrigerated supplements with us and kept them at the hotel. When they would have NEEDED to come with us (such as, after checkout on the last day), I would have taken a separate lunchbox and filled it with ice at the hotel to keep it cool. I also would have added more ice at the parks (asking for free cups of water with lots of ice at any counter service restaurant!).

4) Bu is VERY picky about his chips, which is why I made a point to bring a big bag for each day into the park. At Animal Kingdom (I didn't notice at any other park), they had a booth that sold gluten free and vegan foods, which would have been great for Bu provided I also found a soy-free choice…but a SMALL bag of chips (which wasn't the kind Bu even likes) was SEVEN DOLLARS. Crazy.



Please comment or email me with any questions and I can either answer based on my experience, or I can find out for you. We have annual passes so if there's something in particular that can only be answered at the parks, let me know and I'll do my best to ask or find out next time we go!




Saturday, December 20, 2014

One year...

1) today makes one year since Bu got diagnosed with autism

2) this morning, he found his PEC card and brought it to me so I could ask him if he wanted water, and he could "say" yes

3) I just tried to trick him into accidentally "telling" me he wanted to stay inside, but he immediately caught on and appropriately gestured "yes" and "no" to end up in the bounce house. He's showing me that he understands most things he hears, and he's just been waiting for a way to reply to us.

I can't believe how far my guy has come, and I'm so excited to see what he's up to a year from now. 

Thursday, December 18, 2014

Weekly Progress Video #25



We had a great time this past weekend at Disney World! I'll be back on Monday with a video detailing our experience. In the meantime, please check out the video below (or click here if it isn't loading) to see what else we were up to this past week!

In this video:
*Disney World!
*Re-evaluations, PT details
*New therapy schedule
*Reconsidering ABA
*Brushing and Sensory Diet update
*Naps and good sleep! Still a bit sick…
*Supplements that were affected by our Disney trip
*Speech re-evaluation, YES/NO PECS
*Upcoming Neuro appointment


Saturday, December 13, 2014

A few of our favorite things...

Just thought I'd share...this has been one of Bu's favorite sensory "toys" this past year. It provides awesome vestibular input.


I've seen these exact swings go for $150-200 in special needs stores, but ikea sells them for $35 total. We spent an extra $10 on special hardware to hang it outside, but the price can't be compared! 


We've had it for almost a year now, and it's still in perfect shape, except for a teeny smoothie stain ;)

Wednesday, December 10, 2014

Weekly Progress Video #24

Boy, has this week been up and down! How is everyone else doing?



Please check the video out HERE if it isn't visible above.

In this video:
*not-favorite PT, not a great time
*he LOVES watching me play Tsum-Tsums!
*Sick :(
*Epsom salt baths for detox
*5HTP = turns out you should NOT cycle off it!
*Wilbarger Brushing Protocol, Sensory diet schedule
*Very irritable, very up-and-down moods, lots of anxiety and perseverations
*More playful, making up games

Have a great weekend, everybody!


Thursday, December 4, 2014

Weekly Progress Video #23




If you can't see the video above, click HERE to watch it on YouTube.

Hope everyone had a great holiday! :)



In this video:
*Sensory activity progress
*1 year in therapy!
*Thanksgiving
*ONE nap this week!
*lots of nighttime diaper leaks
*sleep update, not a fun wake-up
*Meastro Bu on the xylophone!
*fine motor activity: beading on shoelaces
*knocked on door to be let out of his room
*started TMG, considering tapering him off 5HTP
*The Weighted Compression vest is here!

Wednesday, November 26, 2014

Weekly Progress Video #22

Forgive me in advance, I ramble a lot and get sappy.



Please check this link if you can't see the video posted above.


In this video:
*Eating with a fork like a champ! As long as I pierce the food for him LOL
*HUGE social and sleep gains with B12 patch
*Prepping for MAPS appointment in a few months
*Some of my regrets and the importance of advocating for your birth rights
*a HUGE THANK YOU to JOSE MARTI SCHOOL for always supporting us!
*Wilbarger Brushing Protocol

Monday, November 24, 2014

Guest Post: "Disney With Special Needs"

As you may have seen in a previous post, I recently did a vlog with my understanding of how the DAS system works at Disney World, and I asked if anyone had their own experience to share regarding special needs at the Walt Disney World parks. Jennifer Lee wrote out a very detailed response, which she allowed me to share here with you guys! Hope it helps anyone out there that was wondering about visiting Disney with their special needs family member. And thanks so much to Jennifer Lee for taking the time to share!



We went last year in November, just after Disney had introduced the new passes in place of the older GAC card. My boys were 2.5 ASD, nonverbal, and 4 months. 
 
The first day you spend at the park, go immediately upon entry to guest services and tell them what your child needs. You don't have to say any diagnosis, just what is important for your child. For us, we needed our stroller with us at all times. DS is a runner if he sees anything of interest, he can overwhelmed in crowds and needs his personal space, and he needs to be able to nap when he's tired. Plus, when he's done walking, he just sits on the ground and won't move. On top of that, we had a 4 month old baby with us.
I told the man at guest services that we needed to keep our stroller with us, (most children's attractions are with stroller parking long before the entrance) he only asked how long we were staying. He took a paper tag thingy (like you get on your luggage at the airport) and wrote our last day on it and that was it. 
 
Our experience after that depended upon the attraction we were at. We went on the jungle cruise with our 4, my parents, my sister, my brother-in-law, and their 2 kids. Because we all wanted to be in the same boat, the man explained there were only so many wheelchair accessible boats, and since families with wheelchairs were already waiting it would take about 20 min. He wrote on a paper group of 10, after whatever time 20 min later was. So we went up and got on the flying carpets ride, (the newborn stayed on the ground with my dad), and then my niece met Jasmine while we got something to drink, and then we went on the jungle cruise.
Just the four of us went on the Finding Nemo, The Seas, or whatever it's called ride at Epcot. There, we just pushed the stroller all the way up until we got into the shells you ride in and when we got off of the ride, our stroller was waiting for us to go through the aquarium area (all other strollers had to be parked about 100 feet from the building). There was a small wait in the line, but Disney lines always have really neat stuff to see anyways, and with DS having the personal space from his stroller, for us: the wait wasn't bad. 
 
We wanted to go on Goofys Barnyard whatever its called roller coaster just DS and myself, but we needed to push the double stroller all the way up, and daddy and baby needed to not go on the ride. The ladies there, just put us straight into the fast pass lane.
There are tons of circumstances around each decision of the cast members that all depend upon the ride, the line (some lines are important to the story and its a shame to miss out on them) and your needs as a family. But not every cast member knows what autism is or what a child with autism needs. Hell, no one in the world could say what every kid with autism needs because they're all so different. That's why it's important to tell the guest services member at the beginning what you need. Then the cast members see what that person has written down in a form they understand and can help you out. I may be biased, because I love disney, and I used to work there, but cast members really do enjoy seeing people have a good time there.


As far as food goes, anyone can bring their own food or drink although I don't know if they have certain rules about containers (lots of public places don't want glass containers brought in, for example). If you do have dietary issues, Disney is amazing with that. We had GFCFSF diet and we only had to say allergy and they would send out a chef to go through everything with you whether at a table service meal or a quick service meal to help you plan a meal together of stuff your little one can, and will want to eat. The exception, small carts. They have a detailed ingredient list in a book, places like the turkey leg stand, and so on.
My personal tips, if your little one will do a stroller, bring one from home that has good wheels that pushes well (we went once with my niece and a cheap a** umbrella thing that I wanted to throw away after two min.). It should be able to lay back/recline to a sleeping position. We also had an extra canopy for ours for a more enclosed space when needed. I'll put a link or pic of it I can find one. While Disney does have strollers to rent, they are hard plastic with no give and while they are great for bigger kids who don't want a nap but don't want to walk all day and instead jump in and out a stroller. They do not lean back at all. Imagine being in an air plane seat all day with your feet straight out in front of you (like in the Saturn's back around 2000, and not being able to lean back. Ugh... not comfy.)
If feasible, stay at a monorail resort. Only on the monorails do you not have to fold up your stroller when boarding. We were lucky to be traveling with lots of family so some people could carry children and some stroller parts onto the buses. Next time, we'll stay on the monorail circuit. 
  And don't try to do everything. I'm sure you know this since you've been to the parks so much, but doing the park slowly takes on another whole dimension with a little one in tow. Oh, we watched YouTube videos of the different attractions getting ready to go to the park so my little guy would know what to expect. We also watched some videos of the castle shows, and right after we got to the castle the first day a show began that we had seen on YouTube (check on the disney app for which shows are playing during your days there) and it was amazing to see DS's face light up while watching it. I was in tears.


Also, if you're wondering about the stroller: It is from the brand ABC Design.  It is available in Germany, and possibly some other countries as well. And it is actually a combination of two different strollers. The frame and one seat are part of the Zoom, which is a double stroller, but the baby seat is from our Turbo 6S.  Baby seats are available for the Zoom specifically but they cost extra and we already had the turbo seat, and it worked just fine.






-Jennifer Lee

Thursday, November 20, 2014

Weekly Progress Video #21



Check out the video directly on YouTube at THIS LINK.

So much great progress this week!

How is everyone else doing?





In this video:
*SO LONG between B12 patches!
*Sleep/nap update
*Homeschooling update: we might start taking it a bit slower…
*He ate beef! Because Abuela made it, of course
*Checking himself out in the mirror, huge social gains!
*Finally tried out the ball pit at therapy, he loved it!
*HE'S USING A FORK!!!

Monday, November 17, 2014

Some of our favorite GFCFSF foods!

I asked on our Facebook page about what YOU would like to read about, and one of the topics requested was gluten free snacks!

As you might be aware by now, Bu eats a gluten free, casein free, soy free diet. We stopped giving him soy long before the idea of autism ever entered our world, just because we'd read about how dangerously estrogenic it is. He'd already been on soy formula for most of his infancy because he couldn't tolerate dairy, so we have a lot of damage to undo.

Gluten is a protein found in wheat, barley, rye and some oats (so we don't do oats). Casein is a protein found in dairy (and it's different than lactose. Lactose free does not mean it's ok). Bu has been gluten free since September 2013 with only a handful of accidental infractions since, and he has been 100% casein free since about January 2014. 

Bu is sensory-defensive and refuses to use utensils to eat as of yet. He also does not allow me to spoon feed him. There are videos on this blog (1, 2, 3) about ways I used to sneak his entire meals into smoothies in order to fill his nutritional gaps, but thankfully he is more open to a wider variety of foods these days despite only using his hands to eat. The smoothies are still given, but they are just regular fruit and veggie smoothies and they are meant as conveyance for Bu's vitamins and supplements rather than as a meal replacement. 

Bu prefers dry, crunchy, salty snacks. The only exceptions he makes are for fresh fruit, particularly apples, grapes, blueberries and watermelon. Sometimes, I can convince him to eat pineapple, pears, kiwi and/or peaches fresh as well. For a very long while, the only protein he would eat is bacon…he now regularly eats bacon as well as turkey or ham slices, hot dogs, chicken-apple sausage and chicken nuggets.

Below are photos of specific snacks and brands that we love because we trust that while they are processed, they are also "safe" for Bu's diet and he loves them. When you have a child with nutritional obstacles, you have to pick your battles. ;)

The best advice I can give to someone just starting on a GFCFSF journey is start slowly, try your best to find safe alternatives to your child's favorite foods while adding in as much fresh, whole food as you're able, and also READ LABELS. Gluten, soy and casein go by MANY names, and you have to be a food detective to not accidentally give your child exactly that which you're trying to avoid! 



Friday, November 14, 2014

Disney's Disability Assistance Service Card




Here's some of my older videos on Disney World: One, Two, Three.

And here's the YouTube channels and websites that I mentioned at the end for more Disney info: Diana Whittles, Temporary Tourist, Special Mouse.

I also want to add on to something I said in the video (particularly at about the 8 minute mark)…waiting time-wise, it's actually an INconvenience to use the DAS. Like I mentioned, we are given a return time based on the Standby wait time. THEN we have to do the FastPass line, which tends to be longish as well since the FastPass+ system has started. So while FastPass+ people are waiting 20 minutes to ride, and Standby riders are waiting an hour, WE get to wait an hour and 20 minutes TOTAL. So yeah.

I'd love to hear about your experience, good or bad, with the DAS! And especially any tips for navigating/consolidating the FastPass+ and DAS situation to make our trip simple!


Thursday, November 13, 2014

Weekly Progress Video #20



To see our feature in the 4th Trimester Bodies Project, click HERE.

To see the video above directly on YouTube, click HERE.

I'd love to hear about your experience with 5HTP or MAPS doctors in general! :)


In this video:
*OT Re-evaluation
*Lots of coordination/strength progress
*Homeschooling update, sensory activities
*Leftie status?
*Weighted Blanket overnight
*BU IS NO LONGER NAPPING?!
*Finally a permanent solution to the therapy schedule problem
*Lots of 5HTP questions…
*We participated in the 4th Trimester Bodies Project!

Monday, November 10, 2014

Oh, brother.

I gotta say, and idk or care if it's a popular opinion...

This situation where all these celebrities are coming out saying they *think* they have autism (Jerry Seinfeld, for one) has me a bit annoyed.

One, because they're self diagnosing, which could be totally accurate, or could be the equivalent of calling yourself OCD because you like a neat house.

Secondly, because many people on the spectrum go on to be successful, charismatic members of society, and obviously that what we ALL want for our children...but some of our kids may never even speak. Putting all these successful celebrities as the "unofficial face" of autism may minimize to people outside the scope what autism is like. It's making people think "see? Autism isn't SO bad" when autism is all that, and then some.

My rambly 2 cents from inside the vacuum.




(EDITED 11/20/14: He backtracks after realizing how ridiculous he came off. LINK)

Wednesday, November 5, 2014

Weekly Progress Video #19



Please click here to see the video directly on YouTube.

What do you think would be a good way to approach a "kindred" family when you're out and about? :)



In this video:
*My social-awkwardness as it relates to fellow special needs parents 
*Oppositional during therapy, wants to do his own thing
*lowered his folinic acid because I noticed him being lethargic and weepy
*PT progress, weighted compression vest, "hip huggers"
*Poking MY eyes…stimming?

Tuesday, November 4, 2014

Toddler Activities and Dollar Store Ideas

This video was posted about a year and a half ago on my YouTube Channel…I made this video LONG before the idea of autism ever entered my mind (I just thought I have a fun, quirky kid…and I do!) but it's still with home education and fine motor practice in mind. I didn't realize it, but I was collecting a great assortment of stuff for at home occupational therapy!

The video quality leaves a LOT to be desired, and it's not very organized LOL…but there are some pretty good ideas for purchases and ideas for how to use cheap goodies for at home therapy/schooling, so I thought it was worth sharing!

Enjoy, and feel free to share your favorite Dollar Store goodies for toddler/preschool activities :)


Thursday, October 30, 2014

Weekly Progress Video #18



I forgot to mention something in the video that's a pretty big deal!

Bu used to be pretty easy going in terms of routine when he was more "in his own world", but the better he gets, the more aware he is…and the more he's come to expect certain things to happen in a certain way. For example, he knows that when we leave the therapy center, I can go north or south, but I always go south to drive home. If he notices that I'm pulling out of the spot in such a way that the car will end up pointing north, he LOSES IT.

Just to give you an idea of the attention he pays to details and our routine LOL

So yesterday, I had to go to the grocery store on the way home from therapy. I knew he was going to have a screaming/crying fit as soon as I made that turn on the street where the grocery store is instead of continuing straight to go to the house. Before we even came out of the parking space at therapy, I said to him, "Listen, Bu…we are going to go home. But first, we are going to the store. So store first, then home. First the store, then we go home. Ok?" Then I drove as usual, and when we were a couple of blocks from the turn, I said again, "Ok Bu, we are going to go to the store. First, we go to the store, then we go home, ok? Store, then home." He chatted something back to me, and sure enough, I made the left turn with no fuss from him. We turned into the parking lot, and he happily led me to a shopping cart so we could strap him in and we could shop.

It makes such a HUGE DIFFERENCE in our lives that he can now understand when we speak to him, and we can use this to prepare him for changes in his routine. Absolutely incredible. Such a small thing, and yet it makes such a huge difference for us all.



As always, you can click here to see this video on my YouTube channel if you can't see if above. And thanks for watching!


In this video:
*Pediatrician appointment
*boosted his folinic acid and B2, DMG update, considering TMG
*Throwing overhand!
*Compression Vest, weighted blanket
*LOTS of word approximations this week
*sensory and OT progress
*Therapy scheduling


Wednesday, October 29, 2014

#thepuzzlepiecepumpkinproject

Someone on Facebook had a great idea to decorate Jack O Lanterns with puzzle pieces this year, to show parents that might be taking their ASD kids trick or treating that they have an ally that "gets it" at your house.

We were inspired, so we made our own "All For Bu" jack o lantern!




Monday, October 27, 2014

!!!

"Car"

"Go"

"Daddy"

"MOOOOOOMMMMM"


Words Bu has used appropriately this weekend.


He's NEVER said "mom" before, btw. And he said it while holding my hand and pulling me somewhere while I was talking to his daddy. I wasn't moving fast enough, hence the Moooooommmmm lol 


I'll take it!

Thursday, October 23, 2014

Weekly Progress Video #17



If you are interested in the Vitamin B12 patch video, you can find that post here. And you can't see Progress Video #17 posted above, you can see it here.



In this video:
*Bu is ASKING for homeschool assignments!
*He suddenly loves his trampoline
*Stimming with his tongue?
*Holding iPad up to his ear, not sure if its sensory or hearing related
*Diet and supplement update…it's been TOUGH
*FINALLY received his weighted blanket!
*Yet ANOTHER change to the therapy schedule -_-

Monday, October 20, 2014

Bubu's Homeschool

It's been going great so far! We've been doing homeschool tasks daily for 3 whole weeks now. Bu has actually started ASKING for "work", and it's carried over into his therapy time at the center, as well.

Here's some of the stuff we've been working on. Lots of online printables, repurposed old toys, and dollar store finds have turned into a nice little "curriculum" for us! 

Thursday, October 16, 2014

Weekly Progress Video #16



Click THIS LINK if you can't see the video above!

Anyone that's seen a MAPS doctor, do you have any advice for me? Anything I should make sure to ask for as far as testing, or any suggestions on getting prescriptions for his supplements to help costs? Also, I'd love to hear any personal experiences with chelation! TIA!


In this video:
*Trying on our new schedule
*His eating is better now that he's no longer sick
*We have appointments set for TWO MAPS doctors…now to pick which one we'll go to!
*A supplement update, including a "mitochondrial cocktail"
*A huge improvement in his receptive language!


Thursday, October 9, 2014

Weekly Progress Video #15



If you cannot see the video above, please click HERE to see it at the source.

Yay for new schedules!

In this video:
*Homeschooling update
*More sick?!
*Obsessed with veggie chips
*OT doesn't think the time is right for ABA, and we agree!
*FINALLY got our favorite PT full time!
*SENSORY WIN! He played with shaving cream this week!
*Set up his Ikea swing (finally)

Tuesday, October 7, 2014

Tape Resist Craft

This was originally posted on my personal blog in July 2012, but it's now private and since it's such a popular pin, I thought I'd repost so pinners could actually read the post! :) 


Hubs' Birthday!



Yesterday was my husband's first birthday as a daddy! I wanted to do something special for him, so I decided the baby and I should make him an art project, inspired by something I saw on Pinterest (of course).

I grabbed an 8X10 canvas (I keep a stack of plain white canvases around the house in case the inspiration for something like this strikes. I am not joking). I taped off a message on the canvas...it looks rudimentary, and it is. It would have looked much nicer if I had actual letter stickers or something, but unfortunately I don't keep those just lying around. It's ok though, it looks pretty sophisticated considering it was made by a 9 month old ;)

I then put the baby in a smock (I keep these around too. Not joking). It's huge on him because it's meant for kindergartners, but it served its purpose. I also opened 3 trash bags and put them down under the high chair (they were put away later to use for trash, no waste here!) and I wrapped the highchair tray in another bag (this one WAS tossed, it was a casualty. Moment of silence for the bag).

I squeezed some washable paint on the canvas and let the baby go! He was supervised the ENTIRE time, and I made sure the pacifier was always in his mouth so he wouldn't be tempted to bring his hands to his mouth until I could wash them. Clean-up was a breeze, and a few wet paper towels later, you couldn't even tell an infant had been finger-painting just moments earlier.

I blotted the excess paint off with a paper towel, and noticed it made a cool pattern, so I did it again more deliberately, then set it under a fan to dry. In the meantime, I made Hubs a coconut buttermilk pie. He doesn't like cake, so I usually make him a pecan pie for his birthday. This year I forgot to buy both pecans and a pieshell! My mom saved me by swinging by on the way to work with the shell (thanks, Mom!) but I decided to forgo the pecans since I had some sweetened flaked coconut and I just used the same recipe.

Once Hubs got home from work, the paint had dried, so we presented him with his gifts! He peeled away the tape to reveal the message. He loved our handiwork! And then, of course, there was the pie...it was DELICIOUS! Even better than the pecan, I'd say. Overall, a very successful birthday, if I do say so myself!









Monday, October 6, 2014

At-Home Therapy Room Ideas...

When I first started looking into at-home therapy and putting together a therapy room/area, I couldn't find ANY good info or ideas..it was very frustrating!

I now have a giant Pinterest board FULL of great ideas for an at-home therapy area. Let me know what at-home therapy or sensory item you can't be without!


http://www.pinterest.com/MommaFriendly/at-home-therapy-room/



Here's some photos of our room with out favorite items to use for sensory and cognitive activities:






I'll be doing videos in future posts about how we use the things in our therapy room for different sensory needs, and which items we've found give the most bang for your buck (either because we use the item so often, or because so many goals can be met with the same item!)