Wednesday, May 2, 2018
Thursday, April 26, 2018
Monday, April 23, 2018
When I was pregnant with Dominic, I joined my due date club at Mothering.com, and followed several of those ladies over to the less politically correct group, MamaDrama. We posted there for a long time, those ladies got me through Dominic's regression and our new reality. And not a one of them lived near me.
When Facebook came along and killed off the message boards, we moved ourselves to facebook and continue to share our daily lives with each other. Many of us have special needs kids in a variety of flavors. We support each other through life - we've done virtual birthday parties, baby showers, and funerals. We've evolved far past an online group of random women - we are a community.
So when my friend Jenn told me she wanted to bring her 17 year old son Ben (spectrum, epilepsy, violence, aggression) to visit for a weekend, I had zero hesitation and cleared my schedule. They spent this last weekend - a CLASSIC Colorado spring weather weekend - in town and we had a lovely time.
I want to point out a couple of things first...
- that all those folks who say that individuals with Autism don't want friends - is in both of our cases, very wrong.
- at different parts of the weekend, both Jenn and I noted how nice it was to be spending time with people who "got" our kids quirks and weren't phased.
We started the weekend on Friday, meeting Ben and Jenn at their hotel for swimming....
|Obligatory Mom Selfie|
|The Boys hit it off really well and were frolicking pretty quickly after meeting each other. Ben is much more Verbal than Dominic, so that helped.|
These folks are from Atlanta, so they were... nonplussed that Saturday we had enough snow to go sledding. So we went sledding... (refer back to my statement about Classic Colorado spring weather)
Then, after a purposeful break time to allow both boys some breathing space, we went back to the hotel and swam again before dinner, which is when I learned exactly how much Shepherds pie 2 teenage boys can inhale. (Hint: ALOT)
Sunday dawned beautifully - as only Colorado can in the spring. Sunny skies, and warm air.... So we did one more swim in the morning and went to Garden of the Gods after lunch. By this swim, Dominic and Ben were BEST FRIENDS.
I always start showing out of towners Garden of the Gods from the scenic overlook, because of how amazing the view is,. and how big the rocks are up close comparatively.
|A Random stranger took this picture. I'm rather pleased with it...|
|First MIGHTY EAGLE post of the day...|
The remainder of these we snapped as we followed the boys through the park... I'm super pleased at how well behaved Dominic was, how interactive and accepting of a peer, and how much fun we had.
And there we have a double mighty eagle!
There were a couple of conflicts between them over the weekend, so it wasn't perfect. BUT - none of those conflicts required more than the moms negotiating a compromise. It felt... oddly normal. We don't get that very often.
In the end, the verdict is that the weekend was a raging success and we have a standing invitation to visit them in Atlanta. And they've lost their status of "Imaginary friends"
Monday, April 16, 2018
One of those recipes is egg cups. You take any combo of veggies/meats, put in a muffin cup, top with beaten egg and bake into a little hand sized frittatta. We love them around here. Tonight, Alyssa stood back and didn't say a word, letting Dominic just make them. He got the steps way out of order, but the end product is delicious, and i'm eating it as I type
Of 10 steps, Dominic needed minimal verbal curing on 5 of them. Mostly around the stove and safety.
What blew Alyssa's mind is that he didn't wander off at all the entire time. His focus was laser. Turns out all the chatting was distracting him. Here we thought we were giving direction. Ooops. What blew my mind is that after he got the egg cups in the oven he asked to cook asparagus and pasta.
Alyssa and I are officially impressed and suprised.
We're bouncing around ideas for helping increase his independence WHILE working on reading without giving him an easy way out. Thinking maybe TYPED, large instructions with a picture of each step a la pioneer woman. Would love any ideas / already made resources.....
Sunday, April 15, 2018
I know I’m having a hard time keeping this blog up to date but there’re multiple reasons for that. Being too busy isn’t one of them. Enjoying watching Dominic blossom and just doing stuff with him are. Today I wanted to share a couple of stories about last week because they are really cool examples of the things we’re starting to see as we peel more layers back and his speech (and subsequently personality) emerge more and more.
Backstory – very early – 4am - Thursday morning, I woke up to the sounds of a dog crying. I thought it was Kumar who sleeps in his crate crying to be let out to go to the bathroom, so I staggered out of bed and opened his crate. He looked at me with a very confused look on his face. I went back to bed, assuming I had dreamed it, not even thinking about Kama because while Kama sleeps on his own bed in our walk in closet, he has access to go in and out as needed so that made no sense. Fast forward to right around dinner time Thursday evening and I was petting Kama. I petted all the way down his tail and he cried. It was obvious he was in pain. A closer examination determined that his tail was very inflamed and he’d been licking it. I didn’t see any blood or broken skin but the level of tenderness was concerning enough that I called our vet, talked about a couple of options and ended up giving him a doggie anti-inflammatory we had left over and made an appointment for Friday morning in case he still needed it. At this point I didn’t have any idea what could be wrong. After a vet visit, xray to determine that his tail was NOT broken, professional exam, we theorize that he got bitten by a spider in the night and that’s why I heard him cry. They shaved his tail to determine that there’s a place of more localized swelling. So he’s got a big bandage on it, antibiotics (a lot. Like a gram 2x a day) in case it was a brown recluse and more anti inflammatories. We go back for a bandage change next week. Also, we own a 72lb poodle.
Point of the story – Dominic got off the bus on Friday after school and his first words were “Kama, feeling better???” and he proceeded to love all over Kama. Super sweet. And showing concern, cognition, memory, and appropriate behavior. Plus – empathy.
Backstory – Ya’ll know that for a long time Dominic’s breakfast was 3 fried eggs and a bowl of oatmeal. I taught him how to cook his eggs fried before I taught him how to cook them scrambled and these days he prefers scrambled eggs with grated manchego (sheeps milk cheese, which he CAN have)
Point of the story – Saturday morning Dominic was plugging along getting his breakfast together. He got out 3 duck eggs, washed them, and proceeded to crack them into a hot skillet. I just watched, assuming he’d decided he wanted fried eggs. No more than 2 minutes later he turned to me with a look of absolute horror on his face – and said “Mommy, SCRAMBLED??” He realized he had forgotten a step and panicked a little bit. He got to learn how to scramble them in the pan instead of whipping them first.
Chores and teenagerhood
We are continuing them, and every day there is SOMETHING that Dominic does around the house. It ranges from picking up dog poop, to taking out the trash, to folding his laundry, to vacuuming. What is hilarious to me is that every single thing I ask of him is met with a drawn out NOOOOOOOOOOOOO. And then 10 minutes later he goes and does it. Its such a glimpse into a typical teenager’s response that it makes my breath catch every time. The other typical teenager thing we’re seeing *every* morning is that he wants to lounge on the couch in his pajamas watching videos (he’s totally figured out how to get to Netflix and amazon on our tv. Better than we have), and does NOT want to get dressed. I get up at 5:30am most mornings to walk on my treadmill which is right by the aforementioned sofa and every time I say “Dominic, go get dressed”, I get the “NOOOOOOOOO” in response. Until I tell him I’m going to take care of the ducks without him. That gets him moving.
And all of these are bookended with the knowledge that we have a long way to go – as evidenced by his toy choice from Target today. Granted, he is playing with them entirely appropriately …..
Tuesday, April 10, 2018
Monday, April 9, 2018
Lets talk about something that’s rarely talked about in either of the factions of autism parents (the Neurodiversity tribe and the Biomed tribe).
Lets talk about cognition.
Now, to preface this discussion, remember, I don’t actually believe that Dominic has Autism. I believe that Dominic had hepatic encephalopathy as a result of the MMR vaccine (anything the virus causes, the vaccine can cause too – if you don’t believe me, google “does measles cause hepatitis” and “does measles cause encephalopathy” and see what you get); triggered by a cytokine storm from the influenza A variant in 2009. That hepatic encephalopathy damaged his neurological pathways and wrecked havoc on his speech center. I am not purporting that every child with an autism diagnosis has the same etiology, but I have personally sat in presentations by doctors who say that all autism is encephalopathy, so I’m confident we are not the only ones.
Both my husband and I are college educated, professionals. I have, from childhood, used reading as escapism. I’m a published author. The concept of our child being illiterate at 13 and struggling to do first grade level math is so foreign to anything we ever thought that its been the one topic I don’t broach with blogs, etc.
He’s a very clever kid. He always has been somewhat of a Houdini, problem solving has always been one of the strengths we talk about. You can see the gears in his head turning. But they don’t seem to turn for things that we consider basic like reading and addition/subtraction.
Another friend of mine online asked in a group what the healthy thing to do was when you got an IQ test back on your child that showed their IQ was 40. 7 years ago, Dominic’s IQ tested at 42, so what I said was “When it happened here, I took that letter and shoved it back in the filing cabinet”. My friend suggested I burn it. I told her it stays in the filing cabinet because I may need leverage with the school district someday. She called me gangsta. That in no way means that number on that piece of paper didn’t eviscerate me.
These kids like mine have neurological damage. And we don’t talk about it. They aren’t just in special ed classes to get sensory support and behavior management. **
At my 20 year College reunion I caught up with a professor of mine and she asked what the likelihood of secondary education was for kids with autism, and I told her that for mine, I will be over the moon ecstatic to get him to the point where he can hold a minimum wage job and live independently. That’s what we’re shooting for. That’s what the majority of my friends are shooting for with their kids. We are looking at 1 in 28 boys RIGHT NOW affected with autism and its projected to be 1 in 2 in less than 20 years. Think hard for a minute what that is going to look like on a societal level.
1 in 2 young adults who cannot be in the military
1 in 2 young adults who can only ever possibly hope to be doing minimum wage jobs.
1 in 2 young adults who may never be allowed to get a drivers license.
1 in 2 young adults who may require a 7x24 support person to live, who never move out of their parents house, who are institutionalized.
1 in 2 young adults who may never have families of their own
1 in 2 young adults who will be taking from social security from an early age, never contributing.
Do you get it yet? Do you understand why we are so vocally protesting mandated vaccination, gmo’s, chemtrails…. Our kids have already been sacrificed for the greater good / herd immunity. We’re trying to protect yours. We’re trying to ensure that your child doesn’t have the same bleak future that ours do. Even bigger than that, we are trying to make sure that as a species we don’t kill ourselves off. That we actually have a next generation. Its that bleak.
**Yes, things here for us personally have taken a distinct turn for the better this year and I’ll tell you more about that tomorrow.
Tuesday, March 27, 2018
With Rod working full time and me working from home full time, we struggle to amuse Dominic when there's a day off school. Over the holidays, I took a full 2 weeks off and thats just how we handled it. For spring break, I wanted to trial what we will be doing this summer, so we have a nanny.
She comes over about when Rod leaves for work, and leaves about when I wrap up. I requested from the school a pile of work and made the below schedule. My biggest goals were to get Dominic active and keep him off the screens.
So. Yesterday -
Rachel arrived right around 10am. Dominic had by that point completed items 1 and 2 and he insisted on a bike ride. They were gone about 40 minutes, came home and he wanted to walk the dogs. We negotiated that down to just 1 dog at a time and they left with Kama. Kumar cried the whole time Kama was gone.
They came home, made lunch (Dominic ate 2 pb&j's on GF bread, a bowl of grapes, a baggie of sugar snap peas, and half my steak/asparagus that I didn't want) and then walked Kumar. Kama cried the whole time Kumar was gone.
Upon their return, they did homework. This consisted of practicing his cursive signature, reading a book out loud, drilling sight words, and doing a math work sheet. Dominic does something called touch point math, which helps him add and subtract, but whats funny is he REALLY wants you to hold his hand while he does it. His teacher warned me about this. We let him stop halfway through the worksheet for another dog walk (Shanti - during which both Kama and Kumar cried the whole time) and then they came back and finished.
Here's a video of him doing his math homework. Its first grade math, but you guys HE'S DOING FIRST GRADE MATH!!!!!!
The plan is to have similarly structured days the remainder of this week. We will mimic this during the summer, but with things like Zoo trips and Swimming worked in each week.
Monday, March 26, 2018
When i went to get him a souvenir mug, they were making rainbow snow cones with them. That was just not going to fly, so I (loudly, because hi, have you met me), asked for a non toxic version. The vendor said they don't have any, so i got one with plain ice. Then i proceeded to have a loud conversation with the other mom in line about how nice it would be if I could get my kid a souvenir without poisoning him. They gave me a comment card to fill out. HA. Dominic loved his olaf mug and actually quite liked eating plain ice.
Obligatory Family selfie:
My favorite moment was the song Let it Go. Mind you, its the one song that everyone knows from frozen, and Dominic has loved it for YEARS. I caught him singing along *on video*.
The place was loud, there were tiny princesses everywhere, there was chaos, and he did AMAZING
Friday, March 2, 2018
So the other day when I shared the video of Dominic making scrambled eggs with significant verbal cues, how I left it was I'd asked his OT how to start fading back the cuing and giving him more independence.
Lasts night was night 2 of Magic socks, and our Liovi dose is up to 2oz. Nothing else has changed. The liovi ramp up has been ongoing for a few weeks now.
This morning Daddy had a conference and left the house at 630am. I had a meeting at 7am and knew that I was going to need to play short order cook while the meeting was going on (Conference calls and working from home, for the win). I hustled through my shower, got the eggs gathered and ducks fed with Dominic and then realized I needed to get on the phone and start multitasking. I asked Dominic to please wash 3 eggs and I'd help him make breakfast in just a few minutes.
I got logged in, prepared for my meeting, which turned out to be next week not this, and my boss asked me a question. That morphed into about 10 minutes of conversation with my boss and I smelled natural gas. I literally ran into the kitchen to deal with this, thinking i'd find a catastrophe.
Dominic had washed, broken and whisked his eggs.
He had turned on the burner (but not quite all the way, hence the smell) and put oil in the pan
He had poured his eggs into the pan
and they were almost done.
He grabbed a bowl of the granola he made with Ms Alyssa the other day and sat down to eat while i frantically texted Daddy what happened.
Blown.Away. We totally just skipped weeks of gently reducing cuing.
Second anecdote of the day (i love it when there's 2).
Dominic has door to door bus service. Every afternoon he comes up the door and rings the bell and waits for an adult to let him in the house. He never just opens the door and comes in. IT took a long time to get him to safely maneuver himself off the bus and up the walk so I assumed we were in for another long time to transition to just coming in.
Today I was outside working and i heard the bell ring. By the time I got inside to open the door, he'd already done so. No Big Deal.
Thursday, March 1, 2018
In the Autism community, there's a phenomenon known as "I'll have what she's having". What happens is that someone tries something, does well, tells their friends and their friends all try it. About half of them do well, and half don't. They go tell people accordingly. Rinse, repeat.
This is how we found the ioncleanse, its how we found Restore, its how we've found PMB... so many things.
I used to TRY THEM ALL, but i'm getting better about listening to my intuition. When my friend shared about these Magic Socks from VOXX, my gut twanged. I, with almost no researching, signed up for the a wholesale account (yeah, its another mlm) and bought pairs for the whole family. The gist of it is, there's technology woven into the fabric of the socks and into the ball of the insole that works to bring the brain stem (where we manage pain, autonomic nervous response, etc) into homeostasis.
I figured I was likely going to kick myself to spending money on really pricey socks.
They came last night. Dominic and I both wore them all night long and all day today.
I get up at 5:30 every morning and get on the treadmill for 45 minutes. I've done this every day this year. And every day this year the first 5-8 minutes has been excruciating because my feet are all swollen from retaining water over night. Some days my feet are so swollen my shoes don't fit me. Its a big deal.
Until its not.
Zero swelling and pain this morning.
The other weird thing is that I get a migraine (officially dx'd now too) if my heart rate goes over about 150 exercising and since it usually bounces all over the place I spend the majority of my workouts staring at my heart rate monitor read out to make sure i don't push too hard. I have gone over 150 every single workout this year.
Until i didn't.
this morning, I didn't break 150 AND i took my treadmill faster than I usually do.
Dominic has been under chiropractic care for 7 years. The doc we see right now is a fellow special needs parent and totally gets us. Dominic is tricky - he wiggles, and says OW whenever even touched, and hunches his shoulders and is generally pretty loud and uncooperative. The Liovi and the dimes as motivator have been helpful, but have never gotten us an appointment without the word "ow" said multiple times, or the refusal to be adjusted.
Today I went first, and Dominic hung out in the waiting room playing on my phone. Doc got halfway through me and said "Wow, he's quiet today". So I told him about the socks. Then we brought Dominic in and he didn't make a peep the ENTIRE fricking time. He allowed all the adjustment without a sound. No "Ow", nothing.
Doc was slackjawed.
And I had to ... i asked him if his socks were knocked off. (I'm such a brat).
Anyway, time will tell how these do for us. At the moment, we're really really impressed. If you're interested in more info, send me a note and i'll get you connected up (these are apparently really good for things like edema and diabetic neuropathy and chronic pain... ). If you're local to me, I'll be putting a big order in sometime in the next few weeks and am happy to order a pair or two for you at my cost.
Tuesday, February 27, 2018
Treating autism is a weird journey.
First you have the fact that the etiology of autism varies by child. So every kid's causative factor or tipping point event is going to be different, and that means that every kids treatments will be different. This is absolutely maddening and some days devastating - when you see a tool that works for someone else either not work for your kid or actually harm them.
Then you have the problem of the doctors. The ones who are well versed in the weirdness of treating autism RARELY take any for of insurance, and the testing and treatments they offer are also very rarely covered by insurance. We are personally out of pocket over half a million dollars at this point between therapies and travel (remember the 10 day trip to mexico to do HBOT?) and supplements (at one point we were averaging $900/mo in supplements alone). We are very very fortunate that not only do I have a solid primary job, I also get paid (which amazes me) to be Dominic's CNA because of the particular medicaid waiver he is on. His disability is severe enough that the state pays me to parent. Blows my mind. I take it because we don't leave resources on the table.
Then you have the near constant churn of tools, therapies and products. Many of them are presented by their manufacturers as THE ANSWER, and for many autism families they do well. Those things that we've used successfully over the years and that remain in my ToolBox are:
IonCleanse by AMD footbaths
Essential oils, anti viral herbals, and immune boosting vitamins
Reflex integration (we've used an OT who was a Brain balance person who IS becoming a Musgatova person)
Intense speech therapy
PMB Hemp oil
PEAPure (anti inflammatory out of Europe)
ABA (we still use the tools from our time at Alpine)
Dorfman Dyspraxia protocol (i pulse this about once a year)
Then there's the discarded tools - the ones that we used that no longer serve us for one reason or another, OR ones that we tried and massively tanked on, which I'm not going to list because we tried them, didn't mesh well, and moved on.
I was talking with one of my peers a few days back - An autism mama of a teenager, who has been in the trenches over a decade at this point. As have we. We talked about how it seems ALL of the sudden there's a TON of new things for Autism families to try, and all of them are supposed to be --MIRACLES!!!!
They are things like Liovi brand yogurt (we're just getting started on it, and I'm really impressed with Dominic's shift in compliance levels), The anti androgen protocol (been on about 6 weeks, getting ready to taper off. Didn't see anything bad, also didn't see anything amazing), Magic socks (this one is new, our first pairs will arrive soon. I'm very intrigued from a sensory and reflex stand point. My aforementioned friend says "they're weird but they work"), some algae called Rens (that I literally know nothing about but the name), a plethora of nutritional stuff - Zennoa is on my radar, but my radar is F.U.L.L...
I do not expect any of these to be a magic bullet. I expect about half of them to have positive results, and maybe of those one or two will end up in my forever tool box. When you've been in the trenches as long as we have (Dominic regressed around a decade ago, shortly after his third birthday. Thats sobering to say), you rarely even get excited about anything, you document like crazy and you hope. Hope is the only thing that we have going for us many days.
Monday, February 26, 2018
Then the following Monday, he and his OT Miss Alyssa made egg cups, with sausage, broccoli and beaten eggs in muffin tins. We use these as grab and go breakfasts. There was extra egg mix so for dinner that evening I had him (because he'd been cooking anyway) just scramble what was left and eat it. He LOVED it. To the point that he's been asking for scrambled eggs quite often.
ANd not just for breakfast.
Yesterday at 3:40 he asked for scrambled eggs, so i told him he could make some if he wanted to. It still takes a good bit of verbal cueing to accomplish this sort of task, and I wanted to give you all an idea what that looks like. And for the record, I am calling this successful because of the desire + focus + attendance to task + follow through. And there were some funny asides, too.
Video 1 - my comment here is for those of you who've never cracked a duck egg before. You really do have to hit it that hard, the shells are super thick compared to chicken eggs from the store. To the point that if he ever does need to crack a store bought chicken egg, there's going to be egg everywhere.
Video 2 - He was struggling to locate a whisk here and attempted whisking with assorted other tools before he got squared away. The other voice you hear in the background is our roommate, Tim.
video 3 - This made me laugh when he decided that the rice steamer needed a towel. I love his incredible focus on grating that manchego cheese, and how careful he was with the grater. I'm so glad i don't have a box grater because i'm sure he would grate his knuckles on one of those.