I know I said I wasn’t going to be posting here that much anymore but then I got a message from someone I knew in high school and … well, here we are.
In the initial message this former classmate of mine tells me that his son has autism and he’s been researching autism reversal through diet and detox.
I see the words REVERSAL and DETOX and every alarm bell in my body goes off. I don’t want to be rude though and I really don’t want to get into an argument so I kindly respond that based on what he has said, we are not on the same page regarding our ideas about autism so basically let’s just agree to disagree and keep it moving.
He felt the need though to respond with a You Tube link that was supposed to convince me that biofilms were the cause of my kids problems and detoxing him using BLEACH either orally or as an enema would cure him.
Anyway, I’m still trying not to be rude at this point so I send a very quipped response to let him know that I am already familiar with the person in the video and I think what they promote is dangerous. The end.
Did he reply yet again? Yup, sure did to say that while not all people will have their autism reversed, it has been shown to work on some and improved the quality of life of many others. He tells me his son has gastrointestinal issues and he thinks it’s related to the autism and it’s possible this detox would fix it all.
This is where I kind of lose it and go off. Not in a rude way, but in a lengthy way.
I let him know in no uncertain terms that people like the woman in the video he sent me are evil and they prey on an already vulnerable section of the population who are so desperate for help they will try things that are actually abusive. That makes them the worst of the worst in my book.
I give him some actual trustworthy information about autistic people. I tell him that there are a number of disorders or diagnoses that co-occur in autism at higher than expected rates. I tell him that these coexisting conditions may either be treatable in their own right or may influence the long-term outcome for the person. I stressed to him that when there is a focus on the diagnosis of autism, it is possible to neglect other diagnosable/treatable conditions and that this happens at a higher rate than we probably realize.
I encouraged him to get additional testing if he’s concerned about his sons medical condition – SEPARATE FROM THE AUTISM.
I laid out my case for why medication or taking any supplements or restricting a diet should be carefully planned for and thought out and supervised by a real doctor who is up to date on real science; not some quack who stumbled upon a get rich scam while touring the jungles of South America. Not by some quack who in more than one country has an arrest warrant out for him, regarding the poisoning and DEATH of several people. Not some quack who would have you bleach enema your child to the point where your child could need a colostomy bag. Not some quack who tells you that the nausea, vomiting, diarrhea, liver failure and severe kidney damage caused by his proposed treatment are proof that the solution they are selling you is working.
It’s been a few days since this interaction and I still am quite shaken by it; mostly because I feel bad for the poor kid. I totally understand why some parents get desperate. I know it can be hard. But no matter how hard it is for the parents, it’s still our job to protect our kids and not to make things even worse for them.
There is no quick, easy, fix. There is no cure. There is only, get your child the help they need to be their best; physically, academically and emotionally. There is do the best you can to provide your child with a good quality of life in whatever way you can.
There is so much good research out there. There are so many therapy options and communication techniques available that are worth paying attention to. What works for one person won’t work for another so I am not here to tell people to follow the path we have followed but I can say with certainty that poisoning the autism out of your child is NOT the way.
Oh, and no, after I sent that last message, I haven’t heard back from him.
One of the things that I often tell my children is how important it is to choose good friends and to be a good friend.
I know for now they don’t “get it”; but I hope that my repeated focus on it, seeps into their DNA and sticks. My friendships are and have been a critical factor in my ability to get through life in any sort of graceful or healthy way.
A couple of weeks ago, we had one of our first really nice weather days since the start of Spring. Ace, Jay and another friend were outside playing. The boys wanted to bring their Nerf guns outside to have “an epic war”. Ace asked because we’ve had “the talk” with him. That one that the parents of white children don’t have to have. The one where the rest of us have to tell our black sons about racial bias and perceptions. The one where we have to warn them to be careful because they may not be assumed to be innocent children playing games. If any of you doubt the truth of that statement please let me know. I’ll point you towards some stories. They are plentiful.
Below is a conversation I had with someone who has been a very dear friend to me for 25 years. We mostly joke around, tease each other and share funny meme’s back and forth, but I knew that if I shared something that was in my heart, he’d step up – and boy did he deliver.
(Me: Right aligned ; Him: Left aligned)
I hadn’t mentioned it in my texts, but in addition to Tamir, I was also thinking about the shooting of Charles Kinsey. Kinsey was taking care of an autistic man when he was shot by police, while lying on the ground with his arms in the air; his disabled client was sitting next to him.
Any time my boys step out into the world they each face dangers beyond what many other boys face. Watching them grow up and become more and more independent is too wonderful to explain. I marvel at them. But, I worry about them.
Their blackness isn’t ever going away.
Ace’s ADHD and associated poor impulse control or social awkwardness isn’t going away.
Jays autism isn’t ever going away.
Those things unfairly put them at risk – YET – there are times when I must let them face the fire. I can’t let them see all MY fear. I do want them to be careful. I do NOT want them to live fearfully.
My friend wished for his loved ones “Time, health and courage.” Those are great, but I think my main wish for my boys and all my loved ones: To have people in your life with whom you can be real and honest and true and loved anyway.
We can make all the money, or plans, or take all the precautions in the world, but in the end the only thing we can be sure of – when the chips fall – is our own truths and the honesty with which we lived our own lives.
I love “the arts” but I am no good at doing most arts and am only passably creative. I also am not good at technology. I can hardly ever even get our TV to turn on. So of course, I was blessed with kids who are into both those things. Jay is my creative and my artist … and Ace is my STEM kid. (Meaning he’s into Science, Technology, Engineering and Math.)
I know a lot of parents who try to make their children into something they are not. Often, parents try to live out their own dreams through their children. I try really hard not to be that way. I mean, I’d love it if my kids were naturally really good at sports or were super talented musically – because that’s what I always wished for myself – but those are just not their gifts. As parents, Shaunie and I are constantly looking for ways to support each boys specific interests.
A couple weeks ago we tried a thing for Ace. It seemed like he and that group would be a good fit considering the kinds of activities they do but it was a giant fail and pretty much a waste of a Saturday. It happens. At least we had gotten a free day trial so no money went down the drain.
Last week, I took him to another thing. This time around there was no free trial. If you wanted to do it, you had to sign up for a 6 week program and pay up front. Once he found out about it, though, he REALLY wanted to go and so we took the plunge.
It was a HIT and he can’t wait to go back. And so I won’t mind at all driving him there every Friday and busying myself for an hour and a half while he lives his best life with other like-minded kids and adults who are experts in the computer world.
Following his class, we got fast food and went home to sit on the floor and watch a TV show that only the 2 of us (in our house) are interested in. While Ace and I were at home having our fast food and TV date, Shaunie and Jay had gone out to dinner and to see a movie.
I want both boys to know that we will always do whatever we can to nurture their dreams but it’s a little harder to find artsy things for Jay. Ongoing, art classes for example, are not really a thing – at least not any that we’ve found in our area. Shaunie has found something though and we’ve signed him up; so in a couple of weeks he’ll get a chance to spend a couple of hours with HIS kinda people. The kind who can draw and paint and who want to learn about brush strokes and shadowing. I truly hope he loves it.
In the mean time, we’ll keep our eyes open for more art/comic book writing programs he can be a part of and we’ll keep having Mom and Son date nights whenever we can cause those are pretty sweet.
We have a lot of fun together as a family. We go to trampoline parks and to shows and museums. We plan beach vacations and camping trips and in the next couple of weeks we’ll be going to the circus. It seems though, that having unscheduled fun with the kids is getting rarer and rarer. You know what I mean by unscheduled? The times when you don’t have a plan but you end up building a fort out of sheets and pillows or making funny hats for stuffed animal toys. The regular – free – EVERY DAY fun.
Now that the boys are 11 and 12 (gasp!), our “at home” time often revolves around making sure that all the things that NEED to be done, get done. The dinner and the homework and the chores. Whatever extra time there is, gets used up with me binging Netflix and them playing video games.
I know that one reason for this is that building forts and making play-doh pies just doesn’t cut it for pre-teens. But I also think lazy parenting is another reason. I’ve been at this parenting thing for 12 years and I’m tired. Tired physically yes, but also tired of putting legos together and pushing trains on tracks. You parents of older kids remember all the “floor time” you used to spend.
When you have a new baby, everything is so exciting. You want to spend every minute with them. Teaching them and watching them and exploring with them. You love going to the park and pushing them on swings and you love hearing them giggle when you play peek-a-boo. You’d do anything for that giggle. You absolutely love feeding them pureed green peas and seeing the mess they make and you marvel at the green poop that follows. After a while though, you begin to love getting back to yourself. You don’t love your children any less. Not one iota. But you love that your children can now entertain themselves and make themselves sandwiches. You love that you can roam the Target aisles in peace and don’t have to spend any time looking at stupid transformers that cost too much for the 10 minutes that your child will actually play with it even though they are telling you that they NEED it and will for sure this time play with it for eternity.
How much together time is the right amount? I want us to be close. I want our bond to be strong. I want the boys to have a joyful life full of sibling and parent interaction. I want ME time.
I don’t have the answers. I am playing this all by air. I will say though that last week, Shaunie and Jay baked some cinnamon rolls together. It was nice. Also one day last week, I put my phone down, my feet up and Ace read me a story. It too was nice.
Then this week, Shaunie had to go to New Jersey on some family business. On Wednesday evening, Jay and I sat together and assembled candy grams for his class for Valentines Day. While we were assembling, we talked. Just he and I. We don’t get that a lot. With one Mom gone, the remaining 3 of us ended up having a slumber party in my room. We are not a co-sleeping family so this was a real departure from the norm. Plus, it was a school night. (What?!?!) It was such a hit that we did it again last night.
I really hope that we’re getting it (mostly) right. I hope we’re not being too hard on them; but pushing them enough. I hope we give them enough of their own space; while not making them feel alienated. I hope we force them out of their comfort zones often enough to spark an adventurous spirit; while honouring their own, specific, interests. I hope we enforce necessary routines; while allowing for (and even encouraging) flexibility and spontaneity.
Do all parents feel this way? How do you guys manage it?
When the alarm went off this morning and Jay rolled over to me and snuggled for a couple of minutes, I knew I had made the right call in agreeing to the “sleepover”. It was just so delicious. But sometimes the answers are harder to decipher; especially when they tell you that all they want to do is have electronics time.
On some random evening for some random reason I found myself telling Ace and Jay stories about themselves as babies and toddlers. These are times that the boys don’t remember or don’t remember much so it was fun clueing them in on their own lives.
The boys were enthralled.
They laughed heartily when I told them about the time Jay threw up on Ace while they were on a kiddie rollercoaster. Jay threatened to use that tactic again as a weapon against Ace should he need it. Ace was rolling on the floor laughing and pretending to gag.
They sat raptured as I told them about funny (or gross) things that happened back when I bathed them together in a tub and about interesting sleeping arrangements we had while on vacation. I told them scary stories about Jay getting lost at the park and Ace getting lost at Disney World. Some of the more embarrassing ones (for them) I will keep off the internet but they know now and find them funny.
A few nights later, inspired by the recent trend of posting 10 yr old pictures side by side with a current picture, Shaunie and I were laughing at each others old Facebook pictures. We weren’t planning to post them but we still had a good time making fun of ourselves and the outfits and hair do’s we had back in 2008. Jay came in and immediately joined in on the fun. He wasn’t interested in our pictures though – He wanted old pictures of himself.
I handed my phone over to him and watched as he delighted in his 1 and 2 and 4 year old self. One by one he clicked on and then perused the photos in albums titled, Summer 2008 and Jays 1st Birthday and Trinidad ‘09 and Fall Fun 2011 & Bronx Zoo 2012.
He was happy when he stumbled upon pictures of himself at the Thomas & Friends Live Show. “Oooh, now that I see the picture, I remember that” he said.
As he clicked on photo after photo I gave him quick tid bits of information that the picture triggered in my memory.
Thinking about that trip we took to the Bronx Zoo brought back a lot of happy memories for me. I told Jay what a good day we had had. I told him that it was on that trip that he had first pointed to something wanting me to see it too. I doubt if most parents can remember the first time their child pointed or requested their attention but I do. I remember. He came across a picture of himself laying down in some bushes/leaves (off the track and away from everyone) and asked what he was doing there. I told him that there had come a point in the day where he needed a break so he took one. Back then things like that worried me a lot. It seemed so strange. Now when I think about it, I think it’s amazing. Those days were the building blocks to what we have now. Jay knew what he needed and snuck off the crowded path to have a quiet moment in the bushes. I knew, even then, that I needed to give him that.
That one memory domino’d into another. It was also a trip to the Bronx Zoo that produced another of Jays good firsts. He had gone there on a school field trip. When he came home I did what I always did. I asked him how his day had been and what he had done. I didn’t expect an answer. Even though he was 5 years old at that time, he was just beginning to talk and had never answered a question such as that. That day though, after being at the zoo, he told me that he had seen animals. It was an amazing moment. Yeah, I have a soft spot for the Bronx Zoo and I do appreciate any chance to think fondly about it.
When I initially began blogging, it was for purely selfish reasons. I needed it. I was stressed out and tired and worried and lonely. I needed a place where I could let out my frustrations and fears and to commiserate with other people who were also frustrated and fearful.
Now, I see it as a love letter and a gift to my children. I do hope they read it one day and that they indulge my parenting errors. I hope they don’t judge my flaws too harshly, knowing that I only ever had good intentions. I look forward to hearing their comments on some of the stories I’ve shared here. I have no doubt that for a great many of them, the take-away was different from their point of view.
For now though, I will tell them about the time Max the dog jumped into the pool to save what he thought was a drowning Ace and about how Ace attended my cousins wedding in Jamaica when he was 2 years old. I was a bridesmaid in it and Ace yelled out in the middle of the ceremony “Mom, what are you doing up there?”
I will tell them about the time their fathers picture was on the front page of the Newspaper below the heading “Parents and students show up for the first day of school” … but the child he was carrying was neither Jay nor Ace. Jay was actually in the front of the line happily holding his kindergarten teachers hand and CC was carrying a child who came on the bus but didn’t want to get off it.
Later, they can read the things I’ve posted here; much of which they would have been old enough to remember. It’ll make for interesting conversations I think.
(Cuphead, pictured above, is Jays current fave video game)
Jay was 3 years old when I began blogging. He turns 11 today. Crazy right?
What a wild 8 years it’s been.
There’s so much material I could pull from if I wanted to reflect on how far he’s come.
I will instead focus on just 2 pieces of info.
Last week Ace and he had doctor appointments. Even though he is 16 months younger and about 2 inches shorter, at 70 lbs, Jay now outweighs his brother by 3 lbs. He’s not overweight at all but we now frequently have to deny his requests to eat MORE (because we know he’s full) and we sometimes have to hide snacks so he doesn’t inhale them all leaving none for his lunch box at the end of the week. We also had to put restrictions on his school lunch account because he was really over doing it with the giant chocolate muffins they have there.
It is a JOY for me to write that.
You guys KNOW how much of a struggle it was getting him to eat. You know he used to eat literally NOTHING but cheese doodles. You know we were so concerned about his nutrition that we had blood work done on him twice in 3 years and tried to take him to an eating disorder clinic but we were denied coverage. It was a S.T.R.U.G.G.L.E.
He has become a kid who eats chicken and rice, tacos, fish, pizza, lasagna, hamburgers with ketchup, bacon, pancakes, beans, carrots and a long list of other items. He willingly tries new things on a regular basis. It’s thoroughly amazing!
Two days ago he said to me:
“Mom, my birthday is coming up and I know I had asked for a *Robux gift card but I don’t need it anymore. I got one for Christmas and there’s still $4 left on it.”
That’s him. He’s not the one to take advantage just because he can.
He did ask for something though. He wanted to bring cupcakes to school for his classmates. As he put it: “This is the last chance I have. I can’t bring cupcakes in middle school.”
He’s still getting more Robux and yes, he’s absolutely getting cupcakes at school – and then whatever he wants for dinner.
Happy Birthday my sweet, funny, sometimes snarky, affectionate, talented, stylish, handsome, love bug of a son. You are a wonder. It has been and continues to be the joy of my heart to watch you grow.
[If you are new to my blog and want to get a feel for how drastic Jays progress has been over the years in other areas, I suggest you read this post from 5 years ago.]
*Roblox is a video game that he plays and Robux is money you can use only in that game to enhance your experience.
I know it’s January now and people are talking about New Year resolutions and the like, but I have some catching up to do.
Our Christmas did not go the way we had planned. Does that mean it was good or bad? Continue reading to see.
On Saturday, December 22nd, we had tickets to see a play. It was to be a cute show; geared towards kids; about Santa and his elves. Everyone was up, fed, dressed and in the car on time. Then we hit traffic on I-95. Not just any old traffic. Major, not-moving, all the roads including side roads were jam packed traffic. The GPS initially said we’d be 10 mins late to the show. “OK”, we thought, “that’s not so bad”. Fifteen minutes later, it climbed to us being 20 minutes late and forty minutes later when we were not even half way there yet, the GPS said we would be 35 minutes late.
The show was not going to happen. Ugh!
We were disappointed about the wasted money but more so about missing out on the event that we thought would kick-start our feel good family Christmas weekend. The kids took it in stride. They said it was fine and that we shouldn’t worry about it and suggested we go to the movies. So we did. We even splurged on movie theatre snacks which you know is a treat because they are not cheap. We watched Bumblebee and everyone thought it was good. (The kids mostly). Yay!
Following the movie we made a stop at the cell phone store to see what options he had because the day before Ace had dropped his in the toilet. Ugh! FYI – It turns out that putting your phone in rice for a couple of days really does work!!! Yay!
The next stop was a Jamaican restaurant that we patronize when we’re in the area. I made a comment that was just meant to be funny but it led to us being gifted a bottle of sorrel – which really was very good. Yay!
All in all, even though it wasn’t the day we planned, it turned out pretty good.
On Sunday, we had plans to go horse-back riding. Once again, everyone was up, fed, dressed and in the car on time. As soon as we pulled out of the drive way, we got a call saying we needed to reschedule because the area was too wet/muddy due to all the recent rain. Ugh!
We spent the entire day being lazy. I mean, there was some light tidying up, but besides that we watched lots of TV, including a Christmas movie. We watched A Christmas Story – the one with the “leg lamp”. I had never seen it before which apparently is blasphemous. The kids were excited because it was Christmas Eve Eve which was cute. It’s such a great feeling seeing them be happy. The day may have been totally different than planned but it turned out pretty good.
To be honest, that’s kind of how the entire holiday week went. Things not going according to plan, but then being imperfectly perfect just the same.
Even our New Years Eve plan didn’t work out. I had bought us tickets to an event which ended up being cancelled on Dec 28th. My money was refunded and Shaunie and I spent the day/night reading and eating left overs and generally having the best time at home just relaxing. At 10 pm on New Years Eve we both said how glad we were that our event had been cancelled. I made it to 12:05 or something like that.
Ultimately, over the past week or so, we went to Church and spent time with many loved ones and yes, Santa was good to us. We did make it to 2 shows. The Harlem Globetrotters on Dec 26th and on Dec 30th we saw Hip Hop Nutcracker. It was a really lovely way to end 2018.
All that’s left is to send everyone lots of well wishes for a happy and healthy 2019.
What the heck is a Hawaiian Raccoon Boy you ask? Allow me to explain …..
On Wednesday evening Jay changed his mind about what he wanted to dress up as for Thursdays “character day” at school. The original idea of being a “business man” was apparently too boring. It was kind of late in the game to be making those kinds of changes though so we had a brainstorming session and went with the easy choice of “tacky tourist”. That had been Ace’s Halloween costume so we had all the necessary pieces. Gaudy, floral button up. Fanny Pack. Bucket Hat. Sandals which were to be worn with socks. You get the picture.
Then, in what I thought was an unrelated action, Jay brought down a clip-on raccoon tail that he owns. (Don’t ask why he owns that. I honestly have no idea.) The tail though had split in 2 so he asked for help putting it back together. We told him we’d fix it but that it wasn’t high on our priority list so we wouldn’t get to it THAT night. He was not happy at all but we were un-phased and sent him to bed.
The next morning, I got a message from Shaunie saying that Jay had glued the tail back together himself AND had worn it to school.
I know I know. You have more questions. What does a raccoon tail have to do with being a tacky tourist? Let me tell you.
I’m just kidding. I don’t know any more than you do. It just did as far as Jay was concerned. We let him be him.
The other thing about Thursday was that the choir kids had a field trip planned. It was their last show of the season and they went to a Senior Living Community to perform for the residents. On our drive home in the evening I asked Jay about his day.
Jay: I had a great day. We went on our field trip and sang songs for old people. They liked it. Then we talked to them for a little bit before going back to school.
Me: On Yeah? What did you guys talk about?
Jay: They asked if we were ready for Christmas and I told them I was a Hawaiian Raccoon Boy and I made the noise for them.
*Proceeds to make an awful hissing/screeching sound*
Me *slightly horrified and slightly finding it hysterically funny*: Ohhh! Well, ahm, what did they say about that?
Jay: They said it was cool. I had teeth too. The vampire teeth that we had at Halloween so I put them in when I made the raccoon noise.
And that my dear friends is what a Hawaiian Raccoon Boy is and what the lovely folks at the Assisted Living Community were treated to. I’m sure it was a first for them no matter how many years of life experience they had. They are most welcome!