Sunday, December 27, 2015

TNI - what a commitment!

TNI is a commitment.

It's a long learning process to which there is no manual. 

Targeted Nutrition Intervention utilizes vitamin/mineral/herbal supplements to support a child's (with Down Syndrome) cognitive health, process, and progress.  I don't want to get into the premade blends from a couple of companies because they don't apply to us; Kaiden's supplemental needs are unique to him.

In October, we started him on a little extra magnesium because now that he's getting adult teeth, I wanted to see if we could cut down the occasional teeth grinding and magnesium is known to be good for that.  He was already getting some magnesium in one of his other supplements - which helped a lot with the teeth grinding - and I wanted to boost the magnesium with out boosting the rest of the ingredients.  There are different types and we are using Reacted Magnesium.  With lots of trial and error (and patience!!) we found his optimal dosage, which happens to be 3 little taps out of the capsule.  It's such a little amount, I think it comes out to be approximately 3mg, when the recommended dosage (for an adult) is 235mg.  Not very easy to measure out - I just have to eyeball it.

I did not expect it to have such an effect on his behavior!  Any more than those 3 little taps and he doesn't sleep at night.  Any less, and his behavior in the afternoons can get pretty wild.  While we had resolved the potty-ing issues at school, his behavior in the afternoons was still more wild, less focused and I knew we could do better, but I didn't expect the magnesium to be the answer.  I can only speculate why he was acting wild and unfocused in the afternoons at school, and I imagine stress/anxiety from November (see below) had a lot to do with it.  Now that we've found his optimum dosage, his behavior has completely changed.  He is calm and focused; if the other children in the classroom act out, he does not join in or engage; he stays out of it and prefers to do his schoolwork.  Sometimes he prefers his schoolwork over any movies they show!  He is much more social.  And at home, he's become so much more cuddly, loving, and all-around fun to be around. 

This, after all the years of button-pushing, boundary-finding, challenging behavior typical of any child . . . on one hand, we joke that I need to drug my child to love me (LOL!!). But really - it's been amazing to see this transformation.

November was very difficult for Kaiden, and me too.  We lost my beloved Lola at age 7.  The transition from always having her, to no dog, was hard on him.  We tried to introduce a rescue dog - she did very well with myself and Kaiden, but her fear of big, tall men got the better of her and after a week she very aggressively went after Nick while his back was turned. That wasn't a pretty situation nor one I ever want repeated, so with that, she went back to her foster family and we've been dog-less since.  Another transition from dog to no-dog, poor kid.  We decided to wait for a puppy - and in early December, I told Kaiden we'd go meet some puppies after the holidays and see if we could find one who would be a good friend for all of us.  Later that evening, he said via his speech device, "I want dog please."  I may have cried a little. :)

Now, the holidays can be challenging for us - I don't like to turn down family invitations but sometimes the environment is just not a good one for him and there's nothing the host/hostess can do about it.  Kaiden needs to be able to have a quiet space away from the noise - not that he always needs it, but it needs to be there if he DOES need it. And when not at home, he tries to go outside to escape but doesn't remember to ask for help putting coat/shoes on and doesn't always remember to ask for permission, either. So if his needs can't be met, we have to leave - or we just don't go in the first place depending on the environment.  And now that he relies so much on his iPad for his sensory needs (auditory as well as using the LAMP app like his speech device) I worry that it's going to get stepped on and broken when he sits with it on the floor with so many people around. Not anyone's fault; it's just the way it is.

This year - with such improved behavior on the magnesium - well I should say, with reduced stress/anxiety, he was able to progress with a lot of other things - I was blown away by him this year.  At school, they have a program where all students are sent home with gifts so all children have a present to open if the parents can't afford it - he was sent home with SIX gifts!  One of them was making noise inside the wrapping.  He wanted at it because he knew exactly what it was - it was the same toy that's his favorite at my mom's house.  He even insisted on putting those gifts under the tree, pushing the big bag across the floor himself; then he helped me wrap presents for everyone else (really just constantly trying to hand me the scissors and paper, LOL).  This was the first year we put presents out before it was time to open them and he did GREAT!   I told him he had to wait until Thursday (Xmas Eve) when Dad got home from work to open them.  After the initial putting them under the tree, he did not touch them, not even once.  And when time came to open them, he knew which ones were his and was able to physically open two of them all by himself with no help - awesome for the kid with very low motor skills!  At the inlaws, gift opening is a free-for-all, which of course he loved.  At my mom's, everyone takes turns and after a couple of rounds, he did well with the turn-taking. He doesn't typically show a lot of facial expressions and it was so heartwarming to see his surprise and pleasure at the gifts he received.

With all the progress he's made just in the last month I can't wait to see what 2016 will bring.

Friday, October 16, 2015

October 2015

I am so proud of Kaiden!  Over the summer we potty trained using the techniques laid out in the book "Oh Crap, Potty Training!".  I HIGHLY recommend this book!  Follow the steps, it really does work. I went into it with no expectations because I honestly didn't know if Kaiden knew he was peeing when he was peeing, and whether or not he could even feel it as he has some delayed sensations. He did great though, and by the end of summer he was well on his way.  He still needs physical assistance with his clothing and aim, thanks to motor apraxia, but he's even waking me at night when he needs to go.  There's still the few and far in between accidents, but 99% of the time, we are accident-free.

Kaiden started kindergarten this fall.  It's been a huge transition for him as it's full days, 5 days per week!  When I was in kindergarten, it was full days, every other day, while other schools did half days 5 days per week.  He was doing really well with being toilet trained, but of course a heavy schedule like that set him back a bit. 

He began refusing to use the toilet in the afternoons, leading to several wetting accidents within a 2 hour time frame.  We thought at first it might be defiance since we weren't having this issue at home.  His teacher and I came up with a plan:  I should come in just before 1pm (the accidents were starting about then) and take him to the bathroom myself.  What we found was that it wasn't defiance at all; he was getting so stressed out with the long days that by the time afternoons rolled around he couldn't control holding/releasing - like his torso was all tensed up.  The first day I came in, I gave him the option of going to the bathroom at school and then continuing on to his favorite class (gym), or coming home and then go to the bathroom.  He chose to go home - and went straight to the bathroom of his own accord, but could not "go" for another hour; he was just too stressed. So, I came in every day for the next week - and each day that week he went to the bathroom for me, and then happily went to gym class.  It was like seeing Mom for a couple minutes in the afternoon was enough of a break from school and he was able to function again. The next week he made it until Thursday on his own before getting too stressed, so Friday I came in to help him.  And . . . the principal had a problem with it. She called me at home and told me it was not necessary for me to come in since the teacher and paras were well trained in handling all sorts of potty issues.  I explained to her that Kaiden was getting too stressed out and having me there for a couple minutes helped and that I was going to do everything I could to set him up for success whether she liked it or not.  We had a short week this week, and he'll have a short week next week, so we're hoping that will get him over the stress-hump and go back to being accident free - because again, he has not been having accidents at home or when we're out in public.

With that and another phone call I was also told about this new data privacy policy; it was explained to me that the school does not want parents in the self-contained classrooms (like the Functional Skills room that Kaiden's in) because the parents might compare their kid's abilities to that of another disabled child - or something to that effect.  Many parents are being hit with this policy and so far we know by way of the lawyers already contacted - schools cannot legally deny parents access to their child in the classroom despite this new policy.  It sounds like the schools are misinterpreting the policy, but since I was never provided with a copy of it, I really don't know.  I do know they can't deny me access to Kaiden, so I'm not worried about it.  If they don't like me coming into the classroom when he needs my assistance, well, that's just too damn bad.

Ok, potty training, check. Onto the next subject. :) Kaiden's had a couple growth spurts this summer (I am VERY thankful for Kohl's return/exchange policy!) and is also sporting two brand new adult teeth!  He still hasn't lost the pertinent baby teeth but they're on their way out.  He's just so darn cute with his new teeth! 

And I learned something else over the last few days - either Kaiden can't tolerate hemp protein powder, or I forgot his taurine in last week's supplement batch.  Or both.  His behavior at school last week became horrible. The kind of behavior where I'm embarrassed as a parent . . . he was hitting the other kids - even took his snack plate and hit a couple kids in the head with it!  And singled out another girl, sneak-attacking her from the side.  Awful behavior. :(  He wasn't doing this at home, only at school.  We talked to him about it several times, but to no avail.  Then when making his new supplement pack (I make them in 8 day packs) I realized the taurine had gotten buried in the back of the cupboard . . . and I bet I forgot to add it last week.  So I made sure it was in there . . .and that day, both his teacher and his outside-the-school speech therapist reported he was like a different kid.  More focused, no hitting.  It could have been either the hemp or the missing taurine or both - I'd made a batch of his "cookies" (really banana pancakes but he calls them cookies!) last week with hemp protein powder for some added nutrition since the growing season is over - previously I'd been adding fresh leafy greens), so both things happened at the same time.  I suspect it was moreso the missing taurine, but I'm not willing to experiment and see which one it was.

And now onto the exciting news from the last post - we purchased an old, abandoned farmstead - 5+ acres with a nice woods, way out in the middle of nowhere. :)  Nick has been working very hard at clearing the property since most of it has been untouched for probably a decade. The house on it has to come down; it's unlivable. We plan to build a house within 2 years. Kaiden will have lots of room to run, I'll have mushrooms to pick and lots of room to garden, and Nick will be able to hunt right in our own backyard. :)

Monday, June 15, 2015

June 2015

A couple of months ago (April, I think) we added in Vitamin B12 to see if it would boost Kaiden's speech.  It was an oral supplement - wanted to try oral and see if there were any benefits before going back to the B12 shots - I mean, why stick the kid if I don't need to, right?  Well, sad to say not only did the oral B12 not boost speech, over time he has become less focused and had more acting-out behaviors like hitting people (for FUN, not out of frustration), he's more twitchy, screeches more, and generally being a crazy little wild man - and he's stopped making full sentences on his speech device, back to one word at a time.  So, knowing something had to be changed with his supplement routine, I removed the B12 to see if that was the problem.  And in the 4 days since, the hitting has been much less, the twitchiness has gone down a notch, and the screeching has been a wee tiny bit less.  I think it's too soon to nail it down as the B12, but right now I'm pretty sure it was the culprit.  I wish the answers were easy rather than all this trial and error stuff.

Since January Kaiden has gained another 3lbs, and it's just amazing to me when I pick him up, there is just so much more meat on his bones compared to a year ago. I can't believe how much he's grown in the last year!

What's been really fun to watch since December with beginning imaginative play - he's starting to want to interact with other children - and even children he doesn't know, rather than just sitting on the sidelines watching!  And interacting in a nice, playful way, not just going up to someone and flat out whacking them . . . which unfortunately, he has done several times.  He likes to see how people react to it . . . and so many people think it's "cute" because he has Down Syndrome, so they let him get away with it, which reinforces the bad behavior.  It's been a struggle.  It's not just Down Syndrome though . . . LOL, I certainly remember one family member when they were a small child and the terrible behavior they thankfully outgrew . . . the parents tried so hard to stop the bad behaviors but this kid just wasn't having it no matter what they did. 

That's it for now . . . we do have an exciting update coming but I want all the i's dotted and t's crossed before we announce that one. :)

Friday, January 16, 2015

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!

Sunday, December 28, 2014

A guest post :)

I did part of a guest blog post over on Down Syndrome: A Day to Day Guide. The first half of the article is regarding seizures, our part is about half way thru! 

Seizures in the Down Syndrome Population: Information and Natural Treatment

Wednesday, December 24, 2014

In the news again! :)

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

Saturday, November 1, 2014

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!