There is more hope for kids with Autism!
Get your tissues ready. This story is sad on so many levels but has SUCH a happy ending. I feel blessed that I've been trusted to share it with you. I know it has the potential to help so many other kids!
I've told you for a while now about why these probiotics are the only ones I take now–I've heard so many stories of how they help people recover from IBS, anxiety, skin issues, hormonal problems, behavior and more. The video I shared here is one of my favorite stories, but today's is another doozie! NOTE: Save 15% with the code KOP when you shop at this link.
Names have been changed to protect privacy…
Adam is severely autistic, OCD, non-verbal and has anxiety and sensory issues. He's 23, super fit physically and very strong. He regressed into autism the very day that he got MMR, DTaP, Polio and Hep B vaccines at age 14 months, at the doctor’s request, while he was still recovering from rotavirus and RSV. (Yes folks, that's EIGHT diseases all at once.)
I became Adam’s step mother on Dec 22, 2018. Prior to that, Adam’s remarkable father had been the sole guardian and caretaker for the previous eight years, all while working full time. Adam had a home health aide stay with him in the mornings and then he’d go to an adult day care program in the afternoons, after which his father would pick him up.
Adam’s dad dragged him all over the country to experience river rafting, camping, canoeing and other similar activities, and they would go hiking, swimming, (tandem) biking and working out at the YMCA. Adam is very physically fit, has well defined muscles and is healthy in body. Nowadays Adam is home with me during the morning, we run errands together some days, go swimming or hiking, and then I take him to the adult day care in the afternoons, and we do other activities when his father gets home.
Note: Adam is like a 6 yr old and I relate to him as such.
Here are my journal entries once we started on Just Thrive, so I could keep track if it was helping…
June 15
Today is the first time since being back on JT that Adam *walked* up the stairs. This is HUGE. Monumental. The norm for his whole life has been to POUND/STOMP up and down the stairs, sometimes two or three times in a row. His vaccine induced autism has always compelled him to do so. He stomps so hard it can be heard throughout the entire (2700 sq ft) house and it rattles the place. He will LEAP UP the stairs 3 steps with his right foot and 2 steps with his left foot. This has been his pattern for years. While the leaping up the stairs is good cardio, the stomping is hard on his knees, ankles and feet. When he stomps downstairs, he gets 3 steps from the bottom and then JUMPS HARD to the cement basement floor, sometimes yelling “owwww” in pain and yet continuing to stomp next time.
He's not stomping in anger, he's stomping in obsessive compulsion and cannot stop himself. We're afraid he's going to destroy his knees. He’s good so far, but age and stomping has got to take a toll over time.
After being on JT for a month (the first time) we noticed he was no longer stomping up the stairs during the day. Not stomping lasted about 6 weeks.
When we ran out of JT and he was off it for two weeks, all his poor behavior habits and the stomping resumed with a vengeance. Sometimes he would run/stomp up and down them 4 to 5 times in a row.
Now, here it is, about 6 weeks back on the JT, and he *walked* upstairs calmly this morning and subsequent trips today. I'm flabbergasted, I'm delighted, I'm anticipating MORE great changes in his mental and emotional responses!
I increased him to 2 caps per day three days ago. We'll see what happens.
June 27
I bumped him up to 3 Just Thrives this morning because I’m so elated at the behavioural changes and eager to see more. He's finally back to that stage where he's almost easy to take care of, comparatively speaking.
He still has anxiety but less meltdowns recently. He tears his shirts off his body if they have a hole in them. They get holes because he bites his shirts at just under the neckline when he's anxious. Better than biting his fingers and wrists like he used to. He had a huge open wound on his wrist for years when the doc had him on five psych meds.
He only stomps up the stairs first thing in the morning now, instead of all day long. When I say stomps, I'm talking HARD stomps. We have 5 big holes in the upstairs hallway where Adam has stomped through the subfloor. They are patched right now and will have to be refloored before we move (by mid 2021.) He hasn't broken through the stairs because they are reinforced.
The OCD continues to gradually lessen, bit by bit. He has a long way to go.
There are so many LITTLE changes that are monumental that I'm having a hard time keeping track, especially when the bad behaviors disappear so gradually.
We have multiple rooms we keep locked so he can't get into stuff. One is a storage room where I keep his snacks and certain foods he would steal, hoard and eat.
Now there are some days I can keep that door OPEN (to get air) and he either doesn't go in or he goes in, looks around and walks out, or he takes ONE thing (like a Lara Bar) and walks out with it (I usually catch him and put it back.) But this is HUGE!
We also keep the inner garage door locked because of the two fully packed deep freezes. Adam is/was a ransacker. If we leave the garage or storage or fridge doors unlocked, he pilfers them, bogarts what he wants out of them, and leaves the doors wide open including fridge and ALL the freezers. I can’t afford to lose thousands of dollars worth of food, hence the locks. Sometimes we’d wake up to every single cabinet, cupboard, fridge, office and closet drawers/doors open, as he had snuck upstairs and ransacked the house while we slept. He’d eat all the special snack foods I keep on hand in one night, or a whole meatloaf or a whole roasted chicken. That’s why it all stays locked now. We can’t afford to lose a freezer full of meat that’s supposed to last us a year.
However, since Just Thrive, he doesn’t ransack as much and closes most of the doors/drawers he opens. Autistics are missing a certain hormone that tells them when they are satiated, so he always feels hungry and would freak out if he couldn’t access food. Not so much any more!
There are many tyrannies that autistic families live under (in my brief observation.)
One is the tyranny of autism traits like meltdowns and extreme OCD (and many others) and the other is the autistic person's spoiled human tyranny because they've gotten their own way in order to avoid the meltdowns and the self-inflicted pain.
I see both of those softening in Adam, just since the Just Thrive protocol. But imagine living under the constant threat of your kid hurting himself, you, your belongings or other people in his life. There is great frustration with non-verbals not being able to communicate and tell how they feel. Most of his words are one word demands like “unlock” (the fridge) or “Roku” or “computer” and I’ve found he better understands some of the sign language we use, but especially the written word.
Also, since non-verbals have a hard time speaking, their voices sound different, kind of like deaf people, and I sometimes have a hard time figuring out what he’s saying. So, we write on little chalkboards to communicate better when we need to.
Other autism tyrannies that come with Adam but are not his doing, is fear. Fear of him being taken from us by the state and placed in a group home because he ‘exposes' himself in public.
Adam has NO comprehension of body/modesty and if he has to pee badly he will pull his pants down to his knees and pee somewhere, completely oblivious to anyone around him. I was walking him in the middle of the day and he peed on a driveway in a residential neighborhood without the least care. That's akin to “public exposure” and can get us all in trouble.
Another is the fear of losing him in a crowd. That is my worst fear because no one will know to whom he belongs. I also fear the police may mistake his anxiety for rage or aggression and manhandle him.
I fear that a predator will get him if this happens. Autistics are sexually abused at a rate of 7x more than average because they cannot tell on the perpetrator.
Our biggest long term fear is that when we are too old to care for him, he’ll have to go to a group home where he’ll be drugged into oblivion and set in front of the TV all day, and possibly abused or sexually abused.
If I were to do a test I would take him off the JT and see what happens in a few weeks, but I can't afford him to revert to the hellishness he lived in and nor can we withstand the aggression and bruising that comes with his anxiety. He is unaware of what he's doing during those episodes so I don't hold him accountable, but I'm SO GLAD they have subsided.
It's not all roses yet. He still becomes aggressive when he's full of poop. He will hold his poop until we FORCE him to go, using threats and bribery, which is a daily occurrence. He'll hold it in until it's seeping out of him and he'll go wipe little chunks off but still won't poop! When he finally goes (he eats a huge amount of food) it's a monster stool that clogs the toilet and as we're threatening him on the toilet he pushes so hard the vein pops out on his neck. I'd film this craziness if it wasn't so private. It's really insane. He holds his urine too, but goes much easier for us and the bribes are easier and he'll go on his own if he's not using electronics. Adam will pee for a bribe of turkey bacon and will poop for threat of taking electronics away. He holds his urine for so long that he pees like a horse when he finally goes.
He is communicating more often now and putting a few sentences together (5-6 words in a row) every once in a while. He is also making much more eye contact now! His father noticed that he seems to be more aware of what’s going on around him.
Another example of change: We keep locks on both fridge and freezer so Adam won't sneak in there and eat a five pound block of raw Jersey Gouda cheese, or a jar of a peanut butter-butter-coconut oil-ginger root-cinnamon-raw honey concoction I make for him that we call frosting.
He would eat himself silly four months ago, but not so much now. He does ask me “unlock” and I unlock the fridge and freezer and he is satisfied that they are unlocked and doesn't ransack the fridge, freezer and house so much anymore. I still lock everything up if I have to leave the room or take a shower or use the bathroom, but his anxiety about seeing the locks is lessening. That's huge.
June 29
He pinches very hard and leaves bad bruises, because his hands are like vice grips. This was a weekly occurrence before. But it's been two months now since the last pinch!
Twice he has been anxious and reached to pinch me, only to soften a bit and control himself. This is HUGE! Self control, HUGE!
July 6
Adam is still at three JT per day. He has a bit of a rough moment first thing in the morning but it usually passes once he's fed and we've walked him or given him electronics. Sunday is his electronics day. The rest of the week we limit his screen time. He watches Sesame Street, VeggieTales, Dumbo, Snow White and the like, sometimes rewinding and watching the same 10 second segments 20 or 30 times because of the OCD.
We keep him very active with (tandem) bike rides, hiking, swimming and all sorts of outdoor excursions. When he becomes anxious, we get him outside and exercise him and he calms down. But again, his anxiety and aggression are both lessened since being on Just Thrive.
One huge thing I'd really like to see changed in Adam, second to becoming verbal again, is for him to WANT to be active again. His Dad used to take him swimming, boating, hiking, working out at the Y and all kinds of active experiences to keep him even keeled. He did that for YEARS. Waterpark several times a week all summer and he loved it.
Two years ago Adam started rebelling against going and doing ANYTHING. All he wants is his screen time and food because both are self-stimulating. We have to force him to walk, hike, swim and ride bikes with us everyday, by using bribes and threats (which do work.) I'd really like that battle to go away.
Let's see how far JT can go in making miracles happen.
July 10
Adam stayed up late on electronics (sometimes we forget to turn off the wifi or remove the cables) and he was very anxious the next morning. I could hear him in the kitchen but wasn’t sure what he was up to so I went to peek on him. He picked up his unfinished plate of fried onions (sauteed in coconut oil and butter) and slammed it on the floor, shattering it with shards and greasy onions flying everywhere.
I assessed his aggression to see how I should react and found him to be very anxious but not going after my arms nor going after more plates. I grabbed the phone and my keys and shoes just in case. When I had time enough to see he was anxious, but done with his breaking spree, I gave him some calming oil, called his father to let him know what was going on, and then continued to assess while I calmed him with reassuring monotone words.
After a while I had him hold the dust pan while I swept the shards into it. By then, his father had arrived to take him on a bike ride. Getting him outside, with new scenery and heart rate up, helps to bring his anxiety levels down.
Three things to note about this event:
First of all, I did not have to give him his pharm medication to halt the anxiety (which I would have done first several months ago.)
Second, he only broke ONE plate! ONE! The three times he has broken plates in the past six months has ended in EVERY plate in the cupboard being smashed on the floor.
But the biggest change worth noting is that during this episode Adam could see and hear me talking to him and he was responding and engaging in his own way. Before, there would be no eye contact as if I wasn’t there, and he could not hear my words. This is HUGE!
Another overall change in Adam’s behaviour has a relational cause, but I believe it’s bolstered by his gut changes from the Just Thrive. When I came on the scene just 6.5 months ago, Adam was untouchable. Now he smothers me with loving attention and hangs all over me. Part of that is because he was mama-starved and I lavished mama attention on him, but I don’t think that would have been possible without the gut/brain changes he’s had.
I arrived in December and began lovin’ this big kid from day 1, only venturing into his heart a little at a time, as much as he would allow. I was very consistent with my mama type attention and quite relentless, because it’s my nature. But, the real inroads were made in March and April after he’d been on the spore probiotics for over a month. I can’t help but think that made the transition easier.
When I first moved here, I could not leave my laptop open and unlocked — if I left the study for what seemed like a split second, I'd come back to find 129 items in my Amazon Cart totaling $600 worth of candy and Sesame Street VHS videos. This happened numerous times (as I was warned by his father it would) and freaked me out because I have credit cards on file that one submission click would make a disaster. I began locking my screen even for a split second departure from the study.
I don’t have to do that anymore because Adam responds to my teaching, reprimands and threats.
July 22
I was thinking of reducing the three cap dosing of Just Thrive for Adam down to two, because it’s hard to tell if three is making a difference, and I thought it’d be nice to save some money. I gave him two this morning. But, I noticed mid morning that he was sitting contentedly on the divan, reading a book. That is SO out of character for him and such a blessing to see, and he’d been so mellow all morning, I promptly gave him the third JT cap so as not to lose momentum for what I’m seeing right before my eyes.
August 16
Adam is pretty much non-verbal, speaking generally one word at at time, unless he’s mimicking his father or I. One word demands rule the day. “Library, rootbeer, tablet, roku” and other things he’s telling us that he wants. Nowadays he is saying “I WANT….”, as in “I want tablet” or “I want spaghetti.”
September 16
Adam’s poop has always had a horribly offensive odor. Something has changed and it’s now low to no odor. We’ve been getting him to poop TWICE a day now, pretty regularly, by bribes/threats, but his stools are now a normal diameter instead of 3-4” diameter. His stools still might be a foot or more long, but the fact that the diameter is so much smaller and the smell is not horrific is notable. I have increased his intake of Mg citrate, Mg threonate and vitamin C considerably, to make pooping easier. It’s working. I attribute the lack of odor to Just Thrive altering the terrain, and the fact he's pooping more often instead of it building up inside him and putrefying.
Lot’s of changes in September as to Adam’s temperament.
We went on a week long camping vacation in southeast Missouri to the fresh water mineral spring fed rivers and even took a SIX hour river float by canoe/raft one of those days. Adam was on the tube raft tied to our canoe and spent several hours with no electronics and a just a bit of snack food, and only nature to keep him occupied. He did great! There was one episode of anxiety at the campsite which we attribute to constipation from the snack and restaurant food binding him up.
He is much more mellow, the mornings are easier, he’s pooping regularly.
He’s not so upset about the fridge being locked, he doesn’t ransack the house looking for food or electronics as much, and he is beginning to handle being able to watch a movie or program from beginning to end instead of freaking out and demanding to watch a 10 second scene over and over again. He would rewind if we weren’t in the room supervising, but at the same time, he’s not stressing about having to watch something ‘beginning to end’ as much as he used to. In fact, we used to have to turn the TV off because he couldn’t handle not being able to rewind over and over again.
Three times I’ve heard him talk in a different voice. His voice is usually strained sounding, as if he has to force his voice to work. And his words can be hard to distinguish also. He says ‘lello’ for yellow and ‘plillow’ for pillow. If his words are unintelligible, I have him write them on a chalkboard for me. That’s happening less and less often as he’s using a few more words and ways to get his words across. But, three times when Adam was talking in a different room, I thought his dad was home because I heard a deep man’s voice. I believe now that what I was hearing was Adam’s real voice!
SEPT 26
Dad came home early from work. He walked in the house, Adam looked up at him and said “Hi Dad.”
FIRST TIME EVER.
Are you crying now too? There is hope for kids with Autism and I hope this posts helps!
Not only is it horrific what some people have to go through, but how many could be HELPED and get better if only they knew about these probiotics and other healthy gut healing options?! Please share this with those you know who could be helped by it!
Important Links:
- Get Just Thrive probiotics — use the code KOP for 15% off.
- Unbiased Just Thrive testimonies
- Is my probiotic even helping anything?!
More you might like:
- The same company that makes Just Thrive also makes the vitamin K2 that I take daily, read more here: Are you taking vitamin D and/or calcium? What you MUST know (even my natural doc didn't know this!)
Mandy says
So fun! We have seen great results with probiotics and good food as well. I’ve just purchased the Just Thrive brand as I like having a variety of probiotics for the kids! Thank, Kelly for sharing this story.