Wednesday, December 30, 2015

Year Two, Week 26 (78th Weekly Video!)


In this video:
*Started NAC, SO HYPER.
*Boosted MB12 shots, SO HYPER.
*progress with signing and sensory-defensive 
*Christmas



Thursday, December 17, 2015

Year Two, Week 25 (77th Weekly Video!)



In this video:
*therapies have been PHENOMENAL
*sick for a day
*Bu has astigmatism!
*starting NAC topically today
*Speech re-eval, so many gains!
*acting like a 4 year old!
*OT re-eval review



Monday, December 14, 2015

Year Two, Week 24 (76th Weekly Video!)


In this video:
*started at-home ABA
*finished Nystatin
*boosted daily dose of theanine
*starting NAC and boosting MB12 shots soon
*DISNEY WORLD


Monday, December 7, 2015

Year Two, Week 23 (75th Weekly Video!)


In this video:
*so busy!
*new ABA center didn't work out, starting at-home next week
*many cancelled therapies
*a couple scary stims emerged…hyperventilating and refusing to drink from anxiety





Tuesday, December 1, 2015

Year Two, Week 22 (74th Weekly Video!)


A very late update for week 74!!!

In this video:
*tummy trouble on Nystatin
*hyperactivity and stimming…maybe due to OTC Carnitine?
*VERY displeased with the administration of the ABA center




Friday, November 20, 2015

Tuesday, November 17, 2015

YouCaring Fundraiser Page!

I've heard good things about YouCaring (like that they don't keep as big a cut as GoFundMe does)…so I decided to start Bu a fundraising page on the YouCaring site for his upcoming annual MAPS visit. I sort of threw together a quick video for anyone new to our page and our family!



You can find the link to the fundraiser HERE.

PLEASE SHARE! Any little bit helps, even if it's spreading the word!

Thanks as always for your support, friends!

Friday, November 13, 2015

Year Two, Week 20 (72nd Weekly Video!)



In this video:
*Med Waiver…no news is good news?
*EEG cancelled YET AGAIN, will 4th time be the charm?
*Steering the trike on his own in PT!
*tolerating more kids!
*EATING CHICKEN NUGGETS AGAIN. YAY for a new/old food!
*CLO might be affecting him adversely…super hyper and night waking
*Off CLO and TMG
*NEXT WEEK: EEG (supposedly) and starting Nystatin



I forgot to mention that Bu didn't have OT at all this week because his therapist was on vacation, not sure if that lack of sensory stimulation might have been affecting his behaviors?

Friday, November 6, 2015

Year Two, Week 19 (71st Weekly Video!)


In this video:
*curious about new toys and books over iPad
*Halloween fun!
*Daylight Savings Time and sleep >_<
*restarted cod liver oil..possible histamine issues?
*tolerating babies/kids in "our space"
*waving consistently, learning sign for "book"
*EEG next week (FINALLY)




Friday, October 30, 2015

Year Two, Week 18 (70th Weekly Video!)


In this video:
*Cancelled therapy, RIP car
*new bloodwork order
*no med waiver update, did get approved for PLSA
*OT Re-evaluation
*waving and "give me" more consistently
*dressing up for Halloween
*loving puzzles and asking us for homeschooling work!
*ABA and OT clashing…
*Pumpkin Patch field trip
*Sensory Fail and a Sensory Win



Wednesday, October 28, 2015

Fozzie and Julia...My Perspective.

A friend of mine tagged me in this article {LINK}. Someone with a high functioning older son on the spectrum wrote about how she thinks Fozzie might be autistic, but he's accepted as just "himself" because he wasn't labelled. A lot like her son. And it was published in the NEW YORK TIMES, obviously a well known and widespread publication, which instantly gives her words more weight.

Something about this blog post really bugged me..."would we have thought of Fozzie differently if we'd been told he had autism? Maybe."

That's wonderful that your son is on the spectrum but easily passes as "a typical quirky teenager". Truly. That's fantastic. And it's nice that Fozzie has so many quirks but is able to just be Fozzie because no one "labelled" him.

photo from NYT article


BUT...That's ONE end of the spectrum. And stories like this set children like mine BACK because mainstream people that only have experience with neurotypical children read stuff like this and think "see? autism is just a bunch of quirks! We should just treat these kids like they're *normal*, not label them, and everything will work out. The label is damaging."

Nope. Label or not, my son cannot yet speak. Label or not, my son has very large difficulties with sensory overload, coordination, and social connections. And whether or not anyone knows he has autism, he can't exactly be described as "just a quirky kid".

It's tricky to have ONE character (like Julia) represent such a wide range of symptoms as those associated with autism. It IS a spectrum, after all. But the fact that we ARE labeling her and introducing her to neurotypical children so that they are prepared to try relate to kids like my son is a HUGE step in the right direction, IMO.

My point? Don't be afraid of a label. Also, it's not okay to print things like this (talking to you, New York Times) without offering a "flip side" to open a dialogue and truly represent the SPECTRUM that is autism.

Friday, October 23, 2015

Friday, October 16, 2015

Year Two, Week 16 (68th Weekly Video!)


In this video:
*sick, fever for 24 hours
*skipped a lot of therapies, but did great when he WAS there
*hearing test update, NO SEDATED TEST NECESSARY!
*3 whole hours of therapy in a row!
*out of cod liver oil
*discovered the toilet and the never ending fun of flushing
*seeing the MAPS doctor again

Remember, we appreciate any and all donations to our GoFundMe to help with Bu's medical expenses!!!

We love you!!! AND YAY, NO SEDATION!!!!!!


Friday, October 9, 2015

Year Two, Week 15 (67th Weekly Video!)



In this post:
*new hangout spot: the shower?
*lost ALL the shoes
*on all the supplements again, possibly affecting his night waking?
*Officially started our Pre-K-4 curriculum, check out details coming soon on my personal blog!
*Medicaid Waiver diagnosis through state psychologist
*EEG never happenedlong story!
*Next week, second attempt at sleep-deprived hearing test

(NOTE: This "experiment" with Benedryl was suggested by the specialist and is being monitored by our doctor. DO NOT attempt this without speaking to your doctor first!!!)





*My Blogs:
http://www.AllForBu.com/

http://www.MommaFriendly.com/

http://www.TheCrunchySpectrum.com/



*On Facebook:
http://www.facebook.com/AllForBu/

http://www.facebook.com/MommaFriendly/


*Help us fund therapies and supplements at:

http://www.GoFundMe.com/AllForBu/

Tuesday, October 6, 2015

Our DAS Experience - Updated September 2015



Some information on the changes to the DAS at Disney World since the last DAS video we posted. This is accurate as of September 27, 2015.

UPDATE: all information still accurate as of March 2017, which was our last WDW trip.




Friday, October 2, 2015

Year Two, Week 14 (66th Weekly Video!)


In this video:
*Missing MANY supplements, and people are noticing!
*Missed a couple shots, but made them up
*Caught a cold at Disney!
*No ABA for almost a week, but he's doing great!
*Pediatrician visit
*Next week: Med Waiver Evaluation and 48-hour Ambulatory EEG


Monday, September 28, 2015

Year Two, Week 13 (65th Weekly Video!)


In this video:
*ABA/OT/PT/Speech therapy updates
*more socially engaged
*"Watch me run!"
*Added B complex (NO FOLIC ACID, NO CYANO-B12)


Friday, September 18, 2015

Year Two, Week 12 (64th Weekly Video!)



In this video:
*Updates on iron and magnesium doses
*Medicaid Waiver verdict and next steps
*Sleep-deprived hearing test and next steps
*DISNEY NEXT WEEK FOR BU'S BIRTHDAY!!!


Friday, September 11, 2015

Year Two, Week 11 (63th Weekly Video!)


In this video:
*He had fun at a birthday party!
*He's sick AGAIN…and not sleeping as a result
*Doubled his daily dose of iron, as per MAPS recommendation
*Yay, new neuro! Yay, EEG scheduled!
*ABA is a nightmare, as always
*Still pretty much "over" waving hello and goodbye
*PRETEND PLAY(?)
*So great at following one-step commands!
*PLEASE send all the positive energy, our sleep-deprived hearing test is on Wednesday!



Friday, September 4, 2015

Year Two, Week 10 (62th Weekly Video!)


In this video:
*not as interested in waving this week
*communicating with gestures, asking us to sign to him!
*having a hard time readjusting to ABA after vacation
*my misgivings about ABA in general, nothing new there.
*saying "buh" for book
*accepting a new cup!
*SENSORY WIN!!!!
*so many vocalizations!
*a birthday party and a long weekend
*meeting our new neuro next week






Tuesday, September 1, 2015

Bu's Physical Therapy ReEvaluation, Summer 2015


A (somewhat lengthy) video comparing and contrasting the physical therapy evaluation reports from December 2014 and June 2015. Both reports and tests were completed by Bu's original physical therapist.



Monday, August 31, 2015

Year Two, Week 9 (61th Weekly Video!)



No actual updates this week! We'll be back on Friday with our regular scheduled update video! :)




Tuesday, August 25, 2015

Bu's Speech Re-Evaluation, Summer 2015



A breakdown and comparison of the evaluation completed in June, contrasted with the evaluation conducted in January 2015 by Bu's former speech therapist.


Friday, August 21, 2015

Year Two, Week 8 (60th Weekly Video!)


In this video:
*getting to work in ABA!
*trying new foods
*in a great mood all week, we're seeing so much of his personality lately!
*WAVING hello and goodbye!
*another awesome week of sleep!
*injections are going great!
*hearing test(s) and sedation, which we hope to avoid
*DISNEY WORLD NEXT WEEK!


Saturday, August 15, 2015

Year Two, Week 7 (59th Weekly Video!)



In this video:
*OFFICIALLY started ABA this week!
*A couple scheduling hiccups…
*FINALLY got an appointment to see a neurologist at the Children's hospital!
*started anticipating (and fearing) the B12 injections
*Gemiini
*Plan in place to get rid of iPad altogether until ABA can implement a schedule
*really liking French nursery rhymes for some reason?
*had a great week in therapy overall, even in spite of a messy reaction to an unpreferred texture on sensory day
*the theme of the week was "Rolling With The Punches!" and boy, did he!


I forgot to mention in the video that Bu the Gymnast is taking so long to fall asleep lately because he's taking bedtime to practice his tumbling and handstands! It's actually quite impressive how good he is at it, even if it is a little scary to watch him do it. We're encouraging him to do it as safely as possible, of course, but I'm looking forward to working on his instruction-following in ABA so maybe in a few months, we can put him in a gymnastics class!



Friday, August 7, 2015

Year Two, Week 6



In this video:
*Bu is sick!
*a couple sleep hiccups ;)
*Autism Play date
*interest in new food?
*still stimming, adopting new behaviors
*supplement update
*independently signing "all done"
*lack of focus, maybe because he's sick?
*new PT
*neurologist authorization update, or lack thereof
*starting ABA officially next week




Friday, July 31, 2015

Year Two, Week 5


In this video:
*ABA evaluation in the books!
*a tiny blip in the sleep radar
*EVERYONE's last day!!! :*(
*off zinc for a couple days
*had a great time at the party!
*MB12 shots!!!!
*learned a new sign
*more waiting for pediatrician/ABA/neuro/new schedule



Friday, July 24, 2015

Year Two, Week 4




In this video:
*Bu did just fine without Momma overnight!
*Using acetyl-carnitine this week in place of Carnitor
*Started Pycnogenol
*Still batting 1000 on sleep!
*Spent all week on the phone…neuro, ABA and med waiver updates.
*Did great with new PT, decided on new schedule but still have kinks to work out
*SO MANY sensory activities this week!
*starting Methyl-B12 shots TOMORROW.




Friday, July 17, 2015

Year Two, Week 3



In this video:
*Back on carnosine, started 5MTHF
*FANTASTIC week of sleep
*Momma has an overnight test coming up, how will Bu do?
*The mission to find a new neurologist
*about to give up on the ABA center...
*Finished medicaid waiver application, now we wait!
*Still no update on August's PT schedule…
*Losing faith in the possible-new PT
*WE GOT THE MB12 INJECTIONS!


Friday, July 10, 2015

Year Two, Week 2 (Weekly Video #54)




I also forgot to mention in the video that he's been off Carnosine for 4 days now, totally by accident! I ran out and it was supposed to arrive today but it never did…GRRR…

*back on probiotics
*obsessed with my planner
*pool day! and 4th of July weekend
*blanket forts
*wearing tank tops! progress!
*the marigolds are growing!
*MAPS follow-up…possibly traveling for EEG, adding new supplements
*New stim…or actually, the reemergence of an old stim. Almost like a hyperventilating grunt?





Tuesday, July 7, 2015

Our Probiotics Experiment



Here is the link to the original article that sparked this curiosity: LINK

And here is some information on Yeast, since I mentioned that probiotics are meant to prevent/control it: LINK


Please let me know if you have any questions, or comment to let me know your own experiences with probiotics (or lack thereof) with your ASD child!




Thursday, July 2, 2015

Year Two, Week 1 (Weekly Video #53)


In this video:
*back on prescription Carnitor
*probiotics experiment (more on that next week **EDIT** here is the link!)
*sleep update
*not interested in proteins this week…maybe he's bored?
*pediatrician visit…(he's now 40.5 inches tall and 36 pounds…finally growing!)
*Med Waiver update
*asking for juice by gesturing!
*"singing"!
*upcoming holiday weekend and MAPS appointment before the next video!


I forgot to mention in the video that he's been doing SO GREAT with changes in routine lately, particularly with going places after therapy rather than straight home! He doesn't mind if I take different routes (which used to be a huge trigger before) and he's been great about going into stores with me, etc. SUCH HUGE PROGRESS!)

I also forgot to mention (though you can see it at the end of the video), Bu got on a big-boy swing for the first time ever this week!



Tuesday, June 30, 2015

Goals, July-December 2015

It's been one year exactly since the original Goals video...

Which means it's time for an update!


In this video:
*23andMe
*Hearing Test
*EEG
*ABA
*Vision test
*Daily at-home activities/schooling
*encourage new foods
*continue Wilbarger, PECS
*start tricycle for PT
*Med Waiver
*look into local homeschooling "rules"
*Geminii?
*some sort of parent training (Bonus goal)


Friday, June 26, 2015

Weekly Progress Video #52


In this video:
*Vitamin E and Carnitine switch-outs
*INCREDIBLE week in sleep, except for one night. Could the heat be helping?
*security baby food?
*did fantastic during his haircut
*new AWESOME car seat
*Physical Therapy and Speech Therapy re-evaluations this week
*chose our new PT
*Neurologist appointment, EEG scheduled
*upcoming pediatrician and MAPS appointments




Friday, June 19, 2015

Weekly Progress Video #51


In this video:
*Bu did great at a birthday party!
*Receptive language is BLOWING UP!
*Not a great time at therapy this week, overall
*homemade, home smoked bacon! Cheaper and we're able to control exactly what goes into it
*moving around the magnesium and iron doses
*introduced headphones to prepare for the upcoming EEG and hearing test
*upcoming biannual neurologist appointment





I forgot to mention in the video that this week, Bu tasted raw green bell pepper (he hated it lol but at least he very willingly tried it) and he rediscovered cherries! Yay!

Friday, June 12, 2015

Weekly Progress Video #50




In this video:
*3 losses balanced by 3 wins…
-tried and stopped Vitamin B2
-Wilbarger Protocol is going great!
-sleep has been BAD
-huge progress with tabletop activities at home AND in therapy
-Our PT is moving!!!! :*(
-Bu said "BYE!"



I'd love any suggestions for things we can do or make for our PT as a going-away present/thank you for everything present…we have about a month to work on it! Also, any tips for the 23andMe collection are appreciated, we're still not sure how to go about it for Bu!

Tuesday, June 9, 2015

heartbroken...

Our PT just let us know that she is leaving the city at the end of July. Tears were shed by all. When Bu's speech therapist moved in January, I felt like someone had died. This is no different. We are very lucky that the speech therapist that replaced her is absolutely amazing and we all clicked right away, but I'm worried that special lightning won't strike twice.

Friday, June 5, 2015

Weekly Progress Video #49

Very short and no-frills this week, I'm honestly not feeling up to much more.




In this video:
*Momma's not having a great week.
*Wilbarger Brushing is going well
*23andMe
*refusing juices/meds
*Sleep update
*chewing shirts constantly
*discovered the walk-in closet as a hangout
*No Ipad!
*More structured homeschool/home therapy






Tuesday, June 2, 2015

So many questions...

Bu has been extra defiant and irritable for a few weeks.

Is it the prescriptions? They're meant to possibly make him hyper, which we haven't seen...maybe the stimming and mood are his version of the side effects?

Could it be the iron? It's definitely making him poop less, maybe the poop is toxifying his body? (I'm only half serious about that. Maybe 65% serious.)

Maybe the fact that we removed ghee from his diet has him lacking enough fats or fat-soluble vitamins, which is making him irritable...a fellow patient of Dr. R asked him about ghee and he said it's safe because it's only fat and not milk protein...could that be it?

Speaking of fat, he went almost a week without cod liver oil and now he's back on it. Maybe he doesn't need it anymore? Is that even possible? He's been taking cod liver oil since way before a diagnosis was even a consideration, I don't see how it would adversely affect him now.

We increased his CoQ10 a LOT, I wonder if there's possible side effects to that?

He's refusing his nighttime juices lately for some reason...maybe the lack of steady 5HTP to his brain is making his serotonin even lower? That's the cause of depression in many people, and depression can manifest as irritability and defiance.

Hell, maybe he's acting like a typical kid! Maybe this is good news, progress rather than regression. Maybe this is his version of the terrible twos...that's where he is cognitively for many things, so it's not too far-fetched a theory...

Maybe he just needs ABA. There's nothing more I can do about that, though. They have all our information, I've filled in every form...all I can do is wait.

Maybe I'm not doing enough. What more can I do? Should I be doing more? Or maybe I'm doing too much...or MAYBE I'm doing so much of the wrong thing, I'm not even noticing all the right things that I'm missing...




The thoughts of an autism parent are a never-ending train of cray.


Thursday, May 28, 2015

Weekly Progress Video #48

Here's the link to last year's JMS Shoutout!

And if you're going to get your own 23andMe test, please CLICK HERE to buy it! (The price is the same for you, but you help Bu with a $20 donation courtesy of 23andMe when you buy your test using that link!)


In this video:
*JMS Fundraiser, Bu had such a great time!
*Started Iron supplements, might be making him fatigued and irritable?
*new form of Vitamin E
*Essential oils = homemade "Vicks" and maybe a glutathione boost?
*All the great sleep!…until not.
*Ghee may not be safe for CFD?
*23andMe testing
*Reader comments and questions…I'll get back to you all soon, I promise!



Wednesday, May 20, 2015

Weekly Progress Video #47


In this video:
*B12 patch now on Saturdays instead of Fridays
*Had to cancel therapy once in the last week because Bu is sick AGAIN, though finally feeling better
*Boosted probiotics and boosting CoQ10
*some possible speech progress, and definite physical/strength progress
*OT reevaluation, new goals

I forgot to mention in the video that his OT mentioned the possibility of color-blindness during the reevaluation…he's always gravitated towards blues and yellows and ignored reds. When we were discussing it and realizing that it's a consistent thing, we came to the conclusion together that it's a real possibility that he might just be perseverating on his favorites, but he ALSO could be ignoring reds because he can't see them. Reds just appear brown/gray to a person that's colorblind. Not sure how we'd go about finding out or if it really affects anything, but I thought I'd mention it.



Thursday, May 14, 2015

Weekly Progress Video #46



In this video:
*Over one sickness and onto the next? Or is it allergies?
*Better sleep but still refusing his nighttime juice frequently
*Chewing on his shirts, and picking up the bad habit of mouthing metal again
*Waiting to hear back from the ABA center



Wednesday, May 13, 2015

Target "One Spot" Finds


A bit of a "bonus video" showing you guys some of the stuff I've found at Target for homeschooling and educational activities…I might do a few more of these as more interesting things pop up at Target and my local dollar store. Let me know if you have any questions or even suggestions!


Thursday, May 7, 2015

Weekly Progress Video #45



In this video:
*Bu is sick, which affected his sleep, supplements, appetite, and therapy (obviously)
*New patch day starting tomorrow, and possibly a new permanent PT schedule?
*Mission Week continued with a bonus challenge of getting Bu's prescriptions on time 
*Got to open a dialogue with someone about Autism and the spectrum of "normal"





Thursday, April 30, 2015

Weekly Progress Video #44


In this video:
*ABA Center, possibly starting soon?
*Bu coping with new OTs while his regular is out
*Bu's sleeping is a bit irregular lately
*had to cancel PT once this week due to his sleep…
*Our MAPS follow-up: mitochondrial dysfunction, CFD, malabsorption of nutrients, new supplements




Thursday, April 23, 2015

Weekly Progress Video #43


I can't WAIT to have some answers from the doctor about all these test results!!!

In this video, I talk about:
 *The Autism Speaks Miami Walk
 *Our new possible ABA provider?
 *Swimming
 *The concept of counting and amounts
 *Bu's OT is on vacation, so we're starting OT roulette!
 *Bu's writing progress
 *Bu, Professional Hula-Hooper
 *Breaking his obsession, drinking water independently
 *More sensory defensive?
 *Sleep and Bed Wetting
 *Lethargy instead of expected hyperactivity
 *Lab results and questions about their meaning, deficiencies?










Thursday, April 16, 2015

Weekly Progress Video #42

How did Bu do during our big, long weekend? Check out the week #42 video to find out! :)



  And if there if of my followers are parents of Special Needs Children in Miami, please feel free to join our Facebook group!


In this video:
*Bu had a bad time in therapy EXACTLY on the one day I decide to run an errand!
*Tantrums vs. Meltdowns
*Wedding, Disney World and Gainesville! BIG Weekend!
*Mimicking sounds?
*Full dose of Leucovorin
*Autism Speaks Miami Walk
*Special Needs Families Miami Facebook group

Thursday, April 9, 2015

Weekly Progress Video #41


I forgot to mention in the video, one of the results we got back was for Bu's MTHFR status… 


Apparently, he is "compound hetero" which means that I have one MTHFR mutation and his father has another, and he received copies of both from us. Long story short (because it's confusing to me, too) is that he has about 40% impairment of his MTHFR as a result of these mutations, so he can't use folic acid at all and needs far more methyl-folate than a typical person. We're hoping to do the 23&me test next month to get more in depth information about our genetic mutations and what they mean for the types of supplements we need. 

In this video:
*Officially done collecting specimens for all the MAPS labwork
*Asked hospital audiologist's about the test and sedation
*Bu has been FIGHTING sleep, maybe anxious or having nightmares?
*Climbing the couch to look at family photos
*Made BFFs with...a box of crackers?
*Playground "PT"
*BIG weekend ahead!
*Sensory win! Allowing and welcoming hair clips to prep for EEG
*Transition win! He was ok with a total schedule overhaul, including a brand new therapist