Tuesday, December 27, 2016

Year Three, Week 26 (130th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO


In this video:
*started new probiotic
*ABA meeting indefinitely postponed
*Clinic Christmas party
*poop problems
*met targets every day in ABA this week, "behavior momentum"
*that damn treadmill
*had SO MANY accidents this week, potty-wise
*NAC gel possibly helping his awareness as far as needing to pee?




Monday, December 19, 2016

Year Three, Weeks 24 and 25 (128th/129th Weekly Video!)

TWO YEARS AGO 1/2

ONE YEAR AGO 1/2


In this video:
*combined videos!
*potty training @ therapy center
*returned to ABA without incident
*fussy driving to center all week
*trying to repeat sounds
*NAC and MB12 shots...irregular might be better?
*potty accidents for attention?
*ABA meeting...
*speech re-evaluation
*denied 4th hour of OT
*drinking juice
*annual ophthalmologist visit
~~~~~~~~~~~~~~~~~~~~~~~~~~~
*DISNEY!
*easy transition back to therapy center
*easy transition back to potty, including DISNEY PIPI!
*avoiding pooping in toilet?
*being placed with other PT, asked center to stop switching him 



Monday, December 5, 2016

Year Three, Week 23 (127th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO


In this video:
*sick, congestion and runny nose...hasn't affected his sleep very much
*FINALLY drinking his juices (with supplements) again...hoping for full "recovery"!
*no longer taking potty learning data, nor are we going to the potty at time intervals. Letting him tell us, and it's going great!
*wanted to spend all week naked
*using "foreign" toilets
*over a week without ABA
*physical therapy evaluation...the PT manager wants to add a third hour a week




Tuesday, November 29, 2016

Year Three, Week 22 (126th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO


In this video:
*wanting iPad and TV at once
*"behaviors" affecting therapy...lots of tantrums
*great communicating, especially when it comes to the potty
*meltdowns with his cousins
*loves restaurants!
*very socially engaged
*still not 100% with his juices/supplements


I forgot to mention poop #3 in the potty! We're doing pretty ok with that...better than I anticipated, anyway.


Friday, November 18, 2016

Year Three, Week 21 (125th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO



In this video:
*drinking actual juice as opposed to his "juices" this week, to try to get him to drink his supplements
*second ever poop in the toilet!
*"all done"...might have created a monster
*showing us his sense of humor and wanting us to participate in his shenanigans
*HUGGING PEOPLE OF HIS OWN ACCORD



Monday, November 14, 2016

Year Three, Week 20 (124th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO


In this video:
*not eating or drinking as much, therefore, not taking his medicines/supplements
*met our new pediatrician
*crazy ABA test for ME
*his first haircut using "clippers"
*laughing in his sleep(?)
*new brand of prescription LevoCarnitine this month
*doing GREAT with the potty


I forgot to mention in the video that he had a tea party this week in Speech, and he appropriately "poured tea" for both himself and his therapist. She's teaching him appropriate pretend play and at least that one time, he was totally into it! I would post the video, but she says his name in it, so use your imaginations! ;)



Friday, November 4, 2016

Year Three, Week 19 (123rd Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO



In this video:
*Halloween
*1st poop in the potty!
*decreased appetite lately...
*"The Hammond Song"
*hair washing and blue shirts
*cord blood study
*reading! but not pairing written words with corresponding pictures
*adding more hours of therapy soon, hopefully



Monday, October 31, 2016

Year Three, Week 18 (122nd Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO


In this video:
*OT re-evaluation complete
*momma gave Bu a booboo
*potty-training still going well!
*went 2 days without going #2, which is very unlike him
*gave him Advil for the first time in years







Wednesday, October 19, 2016

Year Three, Week 16 (120th Weekly Video!)

TWO YEARS AGO



In this video:
*out of probiotics
*out of pycnogenol, trying new brand
*doing MB12 injections midday again, not really affecting his "defiance"
*random fever?
*asking for diaper changes when he pees!

Wednesday, October 12, 2016

Year Three, Week 15 (119th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO



In this video:
*Out of GABA
*self injurious stims?
*nighttime MB12 shot = DISASTER. Never again. 
*using the Z-Vibe more again
*falling asleep much easier lately
*appropriate play with his toys
*his birthday party!




Tuesday, October 4, 2016

Year Three, Week 14 (118th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO


In this video:
*great time at Disney!
*considering moving MB12 shots from morning to after bedtime
*sleep has been spotty since Disney
*curious about watching other children
*communicating and appropriate play!
*troubling stims lately...putting his entire hand in his mouth



Friday, September 23, 2016

Year Three, Week 13 (117th Weekly Video!)

TWO YEAR AGO

ONE YEAR AGO


In this video:
*kept calcium dose steady, sleep is good again
*practicing using fork to pick up his food
*he communicated that he loved me in his own way...I'm more than happy to take it!
*DISNEY THIS WEEKEND


Monday, September 19, 2016

Year Three, Week 12 (116th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO


In this video:
*great day on Monday and sort of challenging the rest of the week...
*not sleeping well. maybe fighting off a cold?
*seeking tactile sensory input, which is out of the ordinary for him
*his lip is raw...allergy? or too much tactile input?
*moving his ABA sessions around the house to make it more fun
*taking calcium again
*very into washing his hands
*loving bath time lately with his lavender soap and body pouf
*bedtime routine changing yet again...asking for "Bubbles Bubbles" every night again





Friday, September 9, 2016

Year Three, Week 11 (115th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO


In this video:
*new students at the therapy center
*able to communicate when he's hurt, which is so helpful!
*"yes" and "no" are coming along great!
*washing his hands, LOVES playing with the sink/water
*encouraging some "old favorites", food-wise
*SWIMMING!
*started Selenium, starting calcium next week




Friday, September 2, 2016

Year Three, Week 10 (114th Weekly Video!)

TWO YEARS AGO




In this video:
*got a dechlorinating bath filter
*no probiotics = low appetite, awful sleep
*back on probiotics = way better sleep and EATING HOT DOGS AGAIN!
*washed his hair (finally)!
*learning to maneuver the DVD menus
*"thumbs up!"
*"gheeghee" = "mommy"?



Monday, August 29, 2016

The one where Momma breaks down...

Last night, I had a "Why, autism? Why us? Why me?" sort of night. 

My son was hurting, and he couldn't tell me how or where. He cried and cried and screamed and I did what I could to help but really, I felt helpless. Autism has become this welcome specter in our home, where it's not even really thought of but constantly considered and accommodated at once. Times like this remind me that we're not like every family, and my baby isn't like all the others. 

Once the storm calmed (entirely on its own...despite my best efforts, it was none of my doing), I craved a hug that would last just the right amount of time for me to cry and cry and let it all out. Instead, I lay in the dark with my son laying on my chest and sobbed as quietly as I could, so as to not wake him and start the cycle over. 

I felt my heart actually break for my son, and it still hurts this morning. Why must life be so hard for him? I've always valued words and communication and expression so much, and he's locked in his head, unable to access these things. I feel like I was given this precious, perfect lump of life and I somehow, through action or inaction, genetics or karma, ruined it. My son is amazing and incredible and I tend to forget all about his diagnosis because he's just a tremendous ball of beautiful energy, but times like this, I am humbled by his struggle and all I can do is collapse under the weight of the guilt that I somehow did this to him. I think that in our case specifically, autism seems like a battle because we REMEMBER life before, when there was not just the promise of a social little chatterbox of a child. He was RIGHT THERE, mimicking speech and seeking us out, and then in a flash, we lost him. How does that even happen? What did we do to our boy?

Just hours prior to this storm, I was counting my blessings and thinking how lucky I am that we've adjusted so well to autism. As I said, most of the time, I don't even see it. It doesn't occur to me that my son isn't like every other kiddo his age and that he couldn't do any and everything he could dream of. I constantly read about families suffering and struggling and I just think "thank the universe that we pretty much hardly feel this way". I'm too close to the situation to really NOTICE just how different our lives are to those around us, so it's easy to convince myself we're like everyone else. 

Why am I sharing this? Because I think I sometimes appear to have it all together, even (and especially) to myself. I want to live authentically and transparently, and part of that is acknowledging when I feel low. I also want to let any other autism parent out there know that it's ok to feel low. Hell, last night I felt full-on defeated. The important thing is not living in that moment. As soon as you're able, dust yourself off and keep on going. Your kiddo depends on you. 

Friday, August 26, 2016

Year Three, Week 9 (113th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO



In this video:
*chewing through phone chargers (again)
*not willing to eat hot dogs lately
*loves his misting fan...allowing his hair and face to get wet!
*ABSOLUTE HEARING TEST WIN!
*He said 'Bacon!"
*learning so much by watching us! Playing with a toy appropriately and loading the washing machine
*hoping for more therapy hours, thanks to the scholarship




Tuesday, August 23, 2016

Year Three, Week 8 (112th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO


In this video:
*meeting (and excelling at) his goals across the board!
*ear buds and (GF) play-doh...so many sensory wins this week!
*adjusting to our homeschool routine
*hoping to add on more therapy through his scholarship


Monday, August 15, 2016

Year Three, Week 7 (111th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO


In this video:
*officially submitted paperwork for Bu's homeschooling with the state!
*really bad sleep...maybe because he was out of magnesium?
*refusing his juices...
*"'tude"
*MAPS appointment
*hospital lost the bloodwork, need new labs
*heavy metals in tissues...
*starting Selenium and Calcium
*1 year with ABA!


Friday, August 5, 2016

Year Three, Week 6 (110th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO


In this video:
*choosing TV (and interacting with us) over iPad
*chewing on his shirt collars, but putting on his shirt independently!
*"give me""shoulders"
*refusing juice (and supplements) in favor of water
*we received a giant bill from the hospital (for no reason)
*new homeschool year!
*Bu hurt his finger :/
*Student's last day


We got some not great news on Bu's labs, but we are speaking to the specialist next week, so I decided to leave that for another time so I can speak to it in detail.






Monday, August 1, 2016

Year Three, Week 5 (109th Weekly Video!)

TWO YEARS AGO




In this video:
*toilet flushing to stim!
*needs more practice on signs for "tete", "all done" and "help"
*detailed notes on MB12 shots, and one year since the shots began!
*playground! so independent! such great turn taking!
*AAC and Boardmaker, using drawings to identify/represent real-life items
*"yes" and "no" are all but PERFECTED.
*telling me when/where's he's hurt. Such amazing progress in communication!
*asking for baths when he's ready for bed
*wants to stim with the shower :/ but he's also interested in drinking from cups!
*could potty training ACTUALLY be in the not-so-distant future?




Friday, July 22, 2016

Year Three, Week 4 (108th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO


In this video:
*"Howie's Owies" and BoardMaker scavenger hunts
*having fun with daddy and his hair
*need to start taking data on how the mB12 shots are affecting his attention and mood, if at all
*taking a LONG time to fall asleep, and is sleeping less at night
*did ALL the bloodwork and urine collection for the specialists' labs




Thursday, July 21, 2016

Year Three, Week 3 (107th Weekly Video!)

TWO YEARS AGO

ONE YEAR AGO

I mistakenly called this video #106 when I filmed, whoops!

In this video:
*favoring the TV over the iPad
*using more signs appropriately!
*playing with daddy
*learning about "first, then"
*MB12 shots are making him distractible?
*learning "up" to start vocalizing for "mands"
*goals!


Friday, July 8, 2016

Year Three, Week 2 (106th Weekly Video!)

ONE YEAR AGO

TWO YEARS AGO


I still owe you guys a "Goals" video! I meant to incorporate our goals into this week's video, but in my brain fog, I forgot. I'll try to get it filmed and posted in the next week.

In this video:
*SICK SICK SICK. Everything got cancelled. No one ate or slept. Everyone is sick.

That's pretty much the gist of it.





Tuesday, July 5, 2016

Year Three, Week 1 (105th Weekly Video!)

ONE YEAR AGO

TWO YEARS AGO


In this video:
*FINALLY got evals signed by the awful pediatrician!
*swinging from the gate!
*boosted MB12 injections....increased eye contact and verbalizations
*learning "yes"
*tummy kisses!
*getting sick



Tuesday, June 28, 2016

Year Two, Week 52 (104th Weekly Video!)

ONE YEAR AGO



In this video:
*TWO FULL YEARS!
*Disengaged at birthday party
*eating blueberries again
*boosted Leucovorin
*very stimmy and sensory-seeking
*waiting on restarting Wilbarger Protocol
*disagreement with ABA on how to handle stimming
*cold turkey off phone, sharing iPad
*incorporating homeschool/work with sharing iPad
*NAC gel timing
*new pediatrician = nightmare


Monday, June 20, 2016

Year Two, Week 51 (103rd Weekly Video!)

ONE YEAR AGO


This week:
*P5P affecting sleep?
*INTENSE tantrums surrounding iPad, addressing in ABA starting next week
*new approach in ABA...so far, so good.
*using "No" appropriately, OUTSIDE of cues and yes/no questions
*ended up having to get a new pediatrician, meeting her next week
*noticing other kids and even interacting with some help



Friday, June 10, 2016

Year Two, Week 50 (102nd Weekly Video!)

ONE YEAR AGO



In this video:
*Doubled his P5P
*eating fish sticks and chicken nuggets!
*sick (again)
*refusing to eat and drink much
*could the time of year be influencing his health and his stims?
*starting using a z-vibe at home and in therapy
*using more epsom salts in his nightly baths
*new pediatrician?!
*Speech and Physical Therapy re-evaluations this week





Tuesday, June 7, 2016

Year Two, Week 49 (101st Weekly Video!)

ONE YEAR AGO 1 & 2


In this video:
*lowered taurine again
*replaced CoQ10 with Ubiquinol
*Anti-ABA lately
*iPad dependency
*PECS menu, starting next week
*new foods and "pancake therapy"!




Friday, May 27, 2016

Year Two, Week 48 (100th!!!! Weekly Video!)

ONE YEAR AGO (and last year's fundraiser!)



In this video:
*Disney!
*sleep schedule is crazy, a bit weepy at start of the week
*adjusted iron and taurine
*long therapy schedules this week!
*met our new pediatrician
*All For Bu fundraiser! THANK YOU, EDITH! THANK YOU, TEACHERS AND STUDENTS OF JMS!

it seems iron, sleep issues, and fundraisers are common themes in the 48th week's out of any given year? ;)

Also, I forgot to mention that the metal chewing has slowed down a lot, but he's still VERY sensory-seeking in the jaw/mouth area, and has taken to chewing on his shirts again. Considering a z-vibe? If anyone has experience with this, please let me know!



Monday, May 23, 2016

Year Two, Week 47 (99th Weekly Video!)



In this video:
*working on "no" by refusing clothes
*no ABA all week
*eye contact is not consistent lately
*new "shadow" in OT
*pancakes = fail
*missing Speech next week




Monday, May 16, 2016

Year Two, Week 46 (98th Weekly Video!)

ONE YEAR AGO





In this video:
*Taurine...uncommon and unexpected side effects. Distractable, unmotivated, less eye contact
*new stims, self injury? Trying to provide redirection and input in other ways
*less sensitive about his ears, goal is to help for hearing test
*pointing and shaking his head "no"!!!!!!!
*what is "negative reinforcement"?


Not in the video, but we noticed this week that his mouthing metal has dropped dramatically. It's only a very rare occurrence lately as opposed to a several-times-a-day thing




Friday, May 6, 2016

Year Two, Week 45 (97th Weekly Video!)

ONE YEAR AGO


In this video:
*replacement OT, doing well
*HATED the beach this past weekend, sensory overload?
*asking for sensory input to his jaw...forgot to mention, he's also (TODAY) started hitting himself on the top of the head and pulling his own hair. EXTREMELY sensory seeking and it has me concerned.
*restarted GABA
*sleep schedule is messed up...not sure if it's worth the effort to adjust it right now?
*so much praise from his therapists this week!
*NAC is absolutely affecting his moods and therapy performance, possibly also his sleep? (Note: he's still sleeping soundly, 10-12 hours nightly. The current "sleep troubles" is that it takes him about 2 hours to fall asleep instead of the typical 20 minutes)



Tuesday, May 3, 2016

Year Two, Week 44 (96th Weekly Video!)

ONE YEAR AGO



In this video:
*Sunburn!
*Sleeping so much! And so sleepy during the day
*super increase in focus and attention, really WANTING to do well in therapies! ADHD looking more likely...
*Able to test his cognitive skills now, so it's "official" that he knows his numbers, letters, colors and shapes
*Pointing!




Friday, April 22, 2016

Year Two, Week 43 (95th Weekly Video!)

ONE YEAR AGO


In this video:
*Disney World! So many milestones!
*At the appropriate dose of Oncoplex
*back on NAC and choline after running out over the weekend
*boosted 5htp, we're NOT a melatonin family
*sleeping great but a bit lethargic...
*so SOCIAL! Really engaged with the people around him


I forgot to mention in the video, I'm trying to encourage new foods...I've offered quinoa crackers (nope!), strawberries (ate them after a while) and fried salami (BIG win!). He's also done GREAT in therapy, particularly practicing pointing and counting.



Monday, April 18, 2016

Year Two, Week 42 (94th Weekly Video!)


ONE YEAR AGO


In this video:

*Started OncoPlex (Link to study HERE)
*Really rough start to the week, very irritable and lots of crying. VERY sensitive.
*Over the hump, way more engaged and "tuned in" now
*busted his chin with his balance ball
*OFF TO DISNEY


Monday, April 11, 2016

Year Two, Week 41 (93rd Weekly Video!)

TWO YEARS AGO…




In this video:
*being sick has affected his sleep
*doing just fine with the occasion 3 hour session
*hearing test follow-up
*MAPS appointment
*perfect bloodwork
*the topic of medication came up, but the answer remains NO for now
*new co-diagnosis: ADHD





Sunday, April 3, 2016

Autism Awareness, Acceptance, and the division it can bring...

With Autism Awareness month comes a lot of posts about acceptance. I find that like the autism spectrum itself, the range of "acceptance" is vast and can divide even parents of people with autism. I make no secret that I use biomedical interventions for my son, along with therapies and homeschooling, to help him achieve his maximum potential. There are also many parents that do not put their children in therapies, change their diets, etc because "they love their children as they are" and "Accept that autism is a part of them".

I think it's a matter of a double standard. Not to generalize, but many of the parents I've known that say "accept your child as is, don't FIX them" are parents of children that speak, feed themselves, and probably have a pretty good shot at living independent lives someday. My child is not there (yet), and I love him unconditionally, but I'm also going to make sure he has the best and easiest life possible. That doesn't make me "unaccepting" of my son. That makes me like any other parent that wants my child to be a self-sufficient grown-up.

Bottom line, we are all doing our best, and we all love our children. It's not a contest and we all have our way of encouraging and loving our kids, spectrum or not.

Friday, April 1, 2016

Year Two, Week 40 (92nd Weekly Video!)

This week in history seems to be a big one for me getting on my soapbox LOL...fair warning!

ONE YEAR AGO...

TWO YEARS AGO...


In this video:
*had so much fun on Easter!
*sensory wins!
*car in the shop, had to cancel some therapies :/
*signed a complete (simple) sentence!
*ate steak! But still not interested in pancakes...
*boosted his 5MTHF
*ready to see the specialist next week!
*Bubu is sick AGAIN
*Momma Bear claws came out this week...speak kindly and do not underestimate people! Especially children!








Monday, March 28, 2016

Year Two, Week 39 (91st Weekly Video!)

ONE YEAR AGO


In this video:
*Daddy did his 23andme
*sick over the weekend
*boosted acetyl-l-carnitine
*learned to sign "pacifier" in a matter of hours!
*licking all the edible things before drinking/eating
*ate chicken nuggets and tried a new food: Rice Rollers
*prepping for the MAPS appointment in less than 2 weeks!







Friday, March 18, 2016

Year Two, Week 38 (90th Weekly Video!)

ONE YEAR AGO TODAY…


In this video:
*one year on Leuco!
*we do "typical" things now! WIN.
*sensory-friendly films!
*did well with a new therapist, did great overall in therapy again
*really into his craft project this week!
*possibly getting sick again? (noooooooooo!)
*recorded an ABA session for the speech therapist to observe
*new signs, signing appropriately
*bloodwork is complete!






Monday, March 14, 2016

Year Two, Week 37 (89th Weekly Video!)



ONE YEAR AGO…

In this video:
*so many changes in routine, but he rolled with the punches!
*limiting his diet again, he's been refusing fruit lately
*bathtime reading
*bloodwork next week




I forgot to mention that this past week, Bu's pediatrician passed away after a long fight with cancer. He was the first doctor to ever make us feel really listened to and supported in this journey, he was a wonderful man and he will be greatly missed.


Monday, March 7, 2016

Year Two, Week 36 (88th Weekly Video!)



ONE YEAR AGO...


In this video:
*so engaged with Signing Time this week!
*interested in drinking from spout cups and open cups
*said "hug" and repeated "aqui" and "bye"
*100% awesome therapy sessions this week
*finally got all the therapists together!
*maybe his first movie theater experience next week?



Friday, February 26, 2016

Year Two, Week 35 (87th Weekly Video!)

This video is very "Autism: The Real Life Edition" LOL



In this video:
*Trampoline is here, still climbing everything
*Seems to be regressing in tolerance to tasks in ABA
*iPad cleanse coming soon!!!
*Pushing himself out of his comfort zone with "W"

ONE YEAR AGO TODAY


Friday, February 19, 2016

Year Two, Week 34 (86th Weekly Video!)



In this video:
*jumping with both feet like a pro!
*random people acknowledging Bu's progress
*back on prescription Carnitine
*STILL climbing on everything
*new trampoline should be here today!
*substitute (male) therapist next week

(forgot to mention, we raised his 5MTHF from 7 to 8mg daily this week. So far, so good!)



ONE YEAR AGO TODAY




Friday, February 12, 2016

Year Two, Week 33 (85th Weekly Video!)


In this video:

*had to rearrange the house to keep Bu from climbing onto windowsills!
*L-Carnitine capsules for now
*fruit affects his sleep? possible salicylate sensitivity?
*communicating so well! The 5-mthf seems to be going great!
*ATEC!




One year ago...

Friday, February 5, 2016

Year Two, Week 32 (84th Weekly Video!)




This week:
*super sick and not sleeping!
*had run out of theanine and CoQ10
*whoops! Wrong dose of LevoCarnitine
*Zoo field trip!!! (Yay, homeschooling!)
*ATEC this weekend
*ABA binder is in da house.



I forgot to mention that he's totally signing "all done" independently and appropriately.

Friday, January 29, 2016

Year Two, Week 31 (83rd Weekly Video!)


In this video:
*VERY stimmy and sensory-seeking
*boosted 5MTHF yet again
*trying a new essential oil blend
*"perching" on all the things!
*kicking butt in therapy
*1 year with his speech therapist
*Coming soon: an OT/ABA mash-up!






One year ago today...

Friday, January 22, 2016

Year Two, Week 30 (82nd Weekly Video!)



In this video:
*Not sick anymore!
*warming up by freezing momma :D
*giving me all the kisses!
*sleep has improved drastically
*increased 5MTHF
*so many vocalizations!
*independent guy!
*no ABA this week, business as usual next week



One year ago today!

Friday, January 15, 2016

Year Two, Week 29 (81st Weekly Video!)


In this video:
*Bu is sick! congested, coughing, the works
*Time outs?
*started citicholine this week, halved carnosine dose to stretch it
*no ABA next week
*boosting 5MTHF next week


(BTW…IDK the proper terms…the PT IS licensed, but maybe she's not certified? All I know is that she lacks the credentials to perform evaluations.)