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!

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
*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 :)