Jan 2015

Posts are getting hard to title.  They're all updates.  Maybe it just makes sense to put the date.

News:  Kaiden can now use his speech device to say a few FULL sentences (regarding food!) by himself.  Mostly he needs to hold my hand in order to touch the buttons he needs - hey, whatever works. :)  And the speech device is now 100% paid for, so that's pretty awesome too!

After an IEP this week, where concern was expressed about Kaiden not being able to isolate letters and the words "low IQ" and "I know you think he can read, but . . ." came up . . . let's just say I wasn't a happy Mama. Remember with motor apraxia, if the thought originates in his head, he can point to what he wants.  In order for Kaiden to be able to point to what YOU want him to answer, he needs support under his wrist.  So yesterday and today, I set him up with flashcards and asked him to point to things.  He could do it, all of it, as long as he held my finger in a certain way. I don't mean he pointed with my finger, I mean he held my finger and extended his own finger to point - he just needed that little bit of physical support.  I took seven videos.  Kaiden knows his letters, numbers, shapes, colors, objects . . . no problem.  We even did a few apps, and no problem.  As long as he has that little bit of physical support!  I really don't give a crap if it's an autism thing or a motor apraxia thing . . . he needs that support, and that's just how it is for right now.

Kaiden's total height gain since we started the whole kelp/thyroid thing last Jan= 5 1/8"!  And he's up to just over 32lbs.  And all it turned out to be was managing his sleep cycle in combination with a new supplement (Cellular Energy) for mito function + a low dose of GABA. 

So on to my new thought . . . here we are and it's winter.  By now, Kaiden's lymphedema should be in full swing.  But it's not.  It flared up early - in October.  Treated it with cold laser therapy and it went down in a few weeks.  With the fluctuations in temps, some really frigid subzero temps, his fingers should be swollen and red right now.  But they're not.  So . . . I wonder why?  We recently did another CBC and it showed Kaiden needed methylfolate.  We added it, and noticed it his verbal speech increased a little bit (hey, any bit is good!) but it also brought back screeching.  Sigh.  But . . . . his lymphedema has not returned.  Are they related?  I don't know.  All I could find was this study that asks if methylfolate in combination with another medication causes lymphedema.  Well, being as Kaiden reacts opposite to so many things . . . is there a remote possibility that he needs methylfolate to keep his lymphedema at bay, or is this just a coincidence??  Who knows.  Something to keep on the back burner and watch this winter and in the coming years.

And the best news for last: on Dec 17th (if you remember, it was December 17th, 2009, that Kaiden said his first and last word, Mama, before the seizures robbed him of his speech), well this December 17th 2014 Kaiden began imaginative play!  He's been playing with trucks, trains, dolls, and even doing some imitation activity!  I can't wait to see what this year will bring!

In the news again! :)

Here is the news interview update on our fundraiser for Kaiden's speech device!
KAAL TV 6 ABC News Interview

November 2014 update

Lots of new things going on!  We've had the speech device for 3 weeks now - the afternoon it arrived, boy did I get a lot of hugs from Kaiden!! Yeah, I teared up a lot! Now, he runs to the device when he wants to talk.  Or he'll occasionally bring it to me to talk, which is the eventual goal. 

I didn't get much of a chance to play around with programming the two loaner units we used, since they were kept at the school.  The one we were able to purchase (thanks to all the generous people that donated to our fundraiser!) is the Accent 1000; I didn't know it came defaulted to the Unity program rather than the LAMP program we'd worked with previously until just a couple days ago.  We had a meeting with a manufacturer (PRC) rep on Thursday, and she was able to show us side by side differences between the two programs.  They are very, very similar with Unity being the original, and LAMP being the evolution of that program. She then set up our device with the LAMP program, and as we talked about Kaiden and how far he's come, she suggested we skip the first and second stages and go right to the full blown, 3000 word program - which means a bit of re-learning for him.  The (touch screen) buttons are all still in the same place but now he needs to touch the first screen, and depending on what he selects, that brings up a related secondary screen (which can then bring up more screens, etc.)  I know he "gets" the two-screen approach; when he picks out what music he wants to listen to (on my PC), he touches the artist first (I click on the artist, it brings up their albums), then touches which album he wants.  This device is just so cool!  We can customize lists for whatever we want to work on, like a vocabulary builder, or simple things like a customized snack list with his favorites. 

I think we originally misunderstood how to teach him to use the device.  It starts with one-word access, and we did that to teach him the meaning of words, assuming he didn't know them (well, I thought he knew them but this was the recommended starting point), and also to get the motions associated with the word - both where the word is on the device and actions like "go", "in", "out" etc.  Here I and his SLP thought we'd just keep slowing adding more one-touch words - but with the rep telling us Kaiden is ready for full access based on the progress he's already made, we took the leap and went for it.  I'd also previously been told to not let him play with it; that too many words would overwhelm him.  The rep said, no, no, no! Let him play with it and get familiar with it!  He'll touch a bunch of stuff a bunch of times but he'll be learning as he does it.  It will still be months and months of training, and we have to learn how to use this program, too!

Next up - growth!  So far this year with the supplement changes (GABA + Cellular Energy, and managing his sleep cycle to calm his adrenals), Kaiden has grown a whopping 4.75"!  Considering he didn't grow much at all the last couple of years - this is great!!  As his doctor said, he might still be below the charts, but now he's following the growth lines which is fantastic!  As of last night he's up to 31.5lbs.  He is now tall enough he can put his snack plate in the sink when done and he feels confident getting in and out of the bathtub on his own.  He no longer uses a booster chair at the table, and can climb up into the chair by himself! With motor apraxia, climbing has been an issue (well, using his hands to assist climbing), and I'm looking forward to him being able to get into the carseat by himself. His head is still very small (hey, so is mine!) so we have begun cranial osteopathy to encourage head growth, reshape his flat spot (from how he slept as a baby) and to widen his palate.  The goal is to widen it enough so he won't need a palate expander!  Completely possible!!  I am really excited about this because palate expanders are expensive, and with Kaiden's oral sensitivities, he'd HATE having it in his mouth for months.  He already has one adult tooth in the spot where he was missing baby teeth, and this one adult tooth is pushing his baby teeth around.

Balance - one of the reasons I love being on the Review Team for New Age Mama blog is getting to try out products free in exchange for an honest review.  The latest item I was able to acquire for Kaiden is a Strider Balance Bike, the 12" Sport.  It's recommended for ages 18 months to age 5.  Kaiden is 5 1/2, but the size of a 3 year old so this works out nicely.  Balance has been a major issue for Kaiden all his life - made considerably better with one of our earlier Dr. Christopher tinctures (the Ear & Nerve Tonic), but not yet where it should be.  It took a few tries, but Kaiden has now mastered the first stage with the bike, Standing/Walking (and running!) - next up is Seated Walking - and I think he would have done that today, too, but we set the seat just a wee bit too high, so will be fixing that.

Eating - it's been a long three-year battle, but Kaiden is now 95% fully self feeding.  FINALLY.  He still does not hold the bowl to stabilize it with one hand while eating with the other. He does need help rounding up the last couple of bites (thanks to not holding the bowl!) but we'll get there.  Eating meals is SO much less stressful now.  I actually get to eat hot food. And use both my hands if I need to!  Or, if I'm not eating at the same time, I can get things done while he eats!

And, thanks to applying some of the principles from the SonRise program, I think Kaiden is mostly "recovered" from autism, with the exception of imaginative play.   I think he'd relate to other kids better if he could relate to how other kids play.

With all the changes this year, Kaiden has really blossomed.  I can't wait to see what next year brings!

We are SO close!!

Here it is, just after the beginning of the new school year.  I was hoping Kaiden would have his new speech device already - in fact, the original plan was to work with it over the summer so I could gauge whether or not he's ready for kindergarten.  We are very close to getting the speech device - it's been a long battle with insurance, too, as they gave us incorrect information for over 6 months - even with me explaining Kaiden's story every. single. time. I called to see where things were at.  Just earlier this month, BCBS (finally) let me know that the speech device manufacturer (PRC) is an out-of-network provider, meaning they weren't going to cover the amount above deductible . . . gee, it would have been nice to know that back in December of 2013 when I first called BCBS to see what we needed to do!  So after explaining Kaiden's story yet again and again (and again!!) BCBS pushed thru a waiver to pay PRC as if they were an in-network provider.  Okay. Then working with PRC, as they typically get paid up front - PRC was able to meet us in the middle - make a $5000.00 downpayment, and then get billed later for the remainder of our deductible after BCBS pays their portion.

So, fundraising needs met, transfer to bank complete, transaction pre-approved at the bank - all my ducks are finally in a nice neat row . . . I call to make the payment . . . and receive no call back.  Oh I get it, people are busy or take sick days or whatever - but it's just another little speed bump in this VERY long journey.  Head-desk.  Hoping today's the day!

So . . . where were we at - GABA.  The low-dose took about 2 months to finally push out all the histamine from Kaiden's system.  As of July, he has been completely diaper rash-free.  I bet he's as happy as I am about that!  I did try playing around with the GABA dosage again to see if it would help a few behaviors (Kaiden thrashes wildly when mad) and it looks like 1/16th of a capsule per day is his optimum dosage.  At least for now; things always change!

Verbal speech - as with every other word he's been able to say, it's incredibly rare for him to say "Mama" or any version of it anymore. I am sad about that, but it is what it is.  He seems to keep a word for a month, maybe two before it slowly disappears.  But the good news is, his fine motor skills have FINALLY!!!!! improved enough he's begun signing back to me!  We've tried sign language since he was 6 months old, on and off.  Imitating purposeful movements has been a huge obstacle for him.  He's now up to 8 signs he can repeat.  A few of them are not entirely correct (and we're still working on correcting them) but at least I know what he's asking for now!  We have been using word/phrase cards - just the word/phrase on a piece of foam board - and if he can't sign it, he will bring me the word card.  He *can* put 3 signs together to make a short sentence by himself without prompting, but it usually takes prompting or he'll just do the main word.

Growth - thanks to the Cellular Energy + low-dose GABA, he's still growing!  From the beginning of this year - with the growth spurt from messing with his kelp & thyroid and now the Cellular Energy & GABA, he's grown 3 - 4" in height and 4 shoe sizes. It almost feels weird to buy him new clothes as he fit into the same clothes for so long.  It still feels weird to pick him up and FEEL muscle tone on his little body.

I've introduced a few simple things gleaned from Raun Kaufman's book, Autism Breakthroughs (about the SonRise program) and it's really helped - I mean REALLY helped!  Kaiden's eye contact and social interaction is so much improved.  He wants to play with me all the time!  He doesn't run off as soon as we're outside.  The only thing I can still see is that Kaiden does not do imaginative play.  He reads, he loves hanging out in the boat while we fish, playing with toys or any object that make lots of noise, and toys/things that have lights, but just does not do imaginative play.  He likes to watch videos about imaginative play, but doesn't, as far as I can tell, do it himself, so he coupled with being non-verbal, he has a hard time relating to kids his age. 

Kaiden's doing another year of preschool this year, and we're hoping he'll be ready for inclusive kindergarten next year.

Non-verbal communication

We're waiting on another loaner unit speech device for speech therapy at school, hoping it's in by next week.  Having worked with one for 6 sessions, he expects it to be there, and was really disappointed when it wasn't at the last session - already packed back up and shipped back for the next person.  I can't wait for when Kaiden can express himself fully!! He gets so frustrated not being able to do that and turns to banging his head on hard objects to vent his frustration, which of course, causes some lovely bruising.  Kaiden's online fundraiser is off to a great start!  We're currently at about 30% of our goal thanks to a lot of very generous people!!  Someone has even offered to organize and run a benefit for him should we need it!

I've been doing a lot of "Show Mama" with him, and now have to remember to say "Tell Mama" instead of "Show Mama" as another way to encourage speech (with or without the speech device).  I've mentioned before, maybe not here, but other places - Kaiden invented his own non-verbal language:

The how:

• comes to someone, raises arms = pick me up; once picked up, will use carrier's arm as a joystick to indicate where he wants to go
• pushes down on a seated person's knees to tell them to get up
• gets behind standing person to push them in the direction he wants them to go/at certain objects
• takes person by the hand and pulls them in the direction he wants them to go/at certain objects
• takes person by the hand and pulls down to indicate either sit on the floor, or help with an object near the floor
• brings objects to person he needs help with
• brings books/flashcards to person he wants to read to him
• brings toys to person he wants to play with (including the dog)
• brings bib to indicate hunger/thirst
• runs into the bathroom and closes the door to indicate the need for a diaper change (this one is about 75% consistent)

More specific:

• snacks - brings bib to indicate hunger.  Pulls or pushes me into the kitchen.  Asks to be lifted up.  He can open the cupboard, take a plate out, close cupboard door, place plate on cutting board, open freezer (with a little help, it has a great seal!), take out his favorite bag of frozen fruit, place next to plate on cutting board, wait for me to prepare, helps carry full plate to table, brings me bib (if dropped on floor), tries (unsuccessfully) to climb into his chair, and can self feed his snack of frozen fruit.  Pushes me away to indicate he'd rather eat his snack alone!
• brings bib to indicate thirst.  Depending on the time of day I may offer him water instead of a meal or snack.  He can take the sippy cup out of the (opened) fridge, drink, place cup back in fridge, and close fridge door.
• meals - brings bib to indicate hunger.  He knows that a bowl = meal and plate = snack.  Depending on the time of day I may offer him a choice of meal or snack.  If I have a pre-made meal waiting in the fridge, I offer that to him.  He will push it away if it's not what he wants (doesn't mean that isn't what he gets!!).
• mealtime - taps empty spoon on table or person, or looks at person to ask for help loading spoon, will feed himself as long as he has help loading each spoonful
• pushes bowl away at mealtime to indicate dislike of a meal
• pushes bowl away at mealtime to indicate he's done eating
• indicates he wants a bath by pulling/pushing me to the stairs, I lift him over the gate, he goes up the stairs and into the bathroom to the tub.  Will throw his bath toys in the tub to indicate he wants to play in the bath for awhile.
• indicates he wants to play in his room by pulling/pushing me to the stairs, I lift him over the gate, he goes up the stairs and to his bedroom, I lift him over the gate and he happily plays.
• indicates he needs a diaper change while in his room by coming to the gate and throwing toys over the gate into the hallway
• indicates  he wishes me to play or read to him by pulling/pushing me into the living room, pulling me down to sit on the floor, then brings me toys or books
• indicates he wants to watch a video by pulling/pushing me to where the video he wants to watch is stored (videos stored on top of the piano or inside the TV cabinet).  If videos on top of piano, raises arms to say pick me up, then picks out which video he wants to watch.  If video in TV cabinet, pulls/pushes me to TV, pulls my hand down, and pulls my hand to the knobs on the TV cabinet, then picks out which DVD he wants to watch.  Once one is chosen, he can put the DVD into the DVD player (must be lifted, it's on top of the TV).
• indicates he wishes me to vacuum the floor by pulling/pushing me to the vacuum and touching the on/off switch
• indicates he wants to go somewhere (although I have no idea where!!) by pulling/pushing me over to his coat and shoes
• indicates he wants to go to bed by either raising his arms to be assisted climbing in my lap, or pulls/pushes one of us to the stairs, goes upstairs and into our bedroom, where he likes to be cuddled to sleep.
• gets out of bed at night to indicate thirst or a diaper change.
• shows affection by touching his forehead gently to a person's cheek.  He had been doing this for quite a while before I thought to ask how he says "I love you".  This is the motion he consistently made upon being asked.

Kaiden has an excellent spatial memory.  No matter where or when he left something in the house, he can find it, even if I can't.  Also for where activities have previously occurred outside the home.

Most things, as long as it's his idea, he can do it, same with the aim of touch.  But to tell him to do the same thing, he can't.  Part of the motor planning process that doesn't work right with motor apraxia.  It's not that he doesn't want to, he just can't get his body to do it unless it's his idea.  I like to say it's like me and choreographed dance - cheerleading, line dancing, the YMCA, etc.  I can watch it all day long, but I can't get my body to repeat the moves, especially not in the correct sequential order; it just ain't gonna happen.  Now if I wanted to dance on my own, sure, I can do that.  But to watch someone else and try to follow?  Nope.

Now, there are things he can do upon being told.  Things like: come here, sit down, stand up, give it to me, go get your bib, put your bib/napkins on the table, go get the toy for Lola, pick up the toy(s) you threw, put it back, put it in, take it out, help me dress you, hand me the diaper pins, hand me your pants, socks, shirt, shoes, coat, mittens - same goes for removing coat, mittens, shoes.  He can help me remove his shirt, but not pants or socks.  If he's standing for dressing/undressing, he knows to use my shoulder for balance and lift each leg when prompted by a touch to the calf or back of knee. Sometimes he'll throw a 10 minute tantrum first, but he'll do these things.  My favorite new thing he'll do upon being told: give me a hug!  This one is huge for him; previous to this he would ask for affection by asking to be picked up, then cuddling, but would not return a hug nor spontaneously give one.  There's more, I'm sure I'm forgetting some of his non-verbal communication.

I have no worries about his receptive communication; he's a smart kid.  But it's frustrating for all of us, especially him, that he can only indicate his wants/needs.  He can't tell me if he doesn't feel well, or if something hurts, he's too hot/cold, or if he's sad/scared/confused/angry/happy/etc. (although some of that I can read his body language).  He can't point, wave, or sign, but he can touch.  His expressive communication is what we're trying to coax out.  And for that, until he's verbal (if he ever is), he needs the speech device. 

Fundraiser Feature!

We've been featured again in the Albert Lea Tribune!  This time about the fundraiser for getting Kaiden his own speech device. :)  Thanks to some very generous people, we've raised just over $2K so far, but we still have a long way to go with a goal of $8K.  Every little bit helps!!

Link to article: http://www.albertleatribune.com/2014/03/technology-aids-in-teaching-disabled-boy-to-learn-words/

Link to fundraiser: http://www.gofundme.com/6t86kw