Month: February 2020

Not long ago, the Crossfit gym that I attend decided that for the new year, they would do a wellness challenge.

Insert my groan here. I have a long history of issues with food and diets. I have been severely obese and a normal size. I have been on every diet and eating program under the sun and lets just say, right now, that I was unenthusiastic. I don’t like working with other people when it comes to this. I would much rather figure things out on my own (I lost 100 lbs. in my twenties and kept it off for more than a decade with no help and no interventions. Then I GOT MARRIED. I HAD KIDS. And several stressful events had me putting my health and self care on the back burner. But that’s another post for another day).

But there were a couple of reasons why I got sucked in. First of all, my amazing trainer, Edlin, gave me the big, beautiful, brown eyes and encouraged me to join. She thought it would be good for me. Secondly, it was a WELLNESS challenge and NOT A WEIGHT LOSS challenge. Thirdly, it was a competition in teams and I really, really liked my team leader. And, finally, since becoming a special needs mom, my own wellness is a huge priority. I need to be strong, healthy and ALIVE for as long as I possibly can in order to care for my son. If you are a caregiver, you know exactly what I mean. Yes, others can take care of our children when we are gone but they won’t do it like WE would do it, even if they are amazing.

So there were a lot of reasons why this was a good idea, my cranky attitude notwithstanding (Did I really need ONE MORE THING in my life right now?). I went home and thought about it and decided that a) I would commit to doing it and b) I would lose the cranky attitude, because no one likes having to work with cranky people, myself included.

Each team was given a different eating program. I ended up on a team that was doing the 800 Gram Challenge. I had never heard of this. Immediately, my thoughts whirled. How much does a gram weigh, anyway? Am I only allowed to eat 800 grams of food a day? Am I going to go hungry? Is this going to suck? Is it going to restrict me to where I am setting myself up to binge? Wait, I have to WEIGH things (past diets surfaced in my mind)? Let us just say that I was HESITANT.

It was SO FABULOUS that even though the challenge is over, I am still doing it. I FEEL SO GOOD on it. It is easy to do, there is absolutely no deprivation whatsoever and I definitely feel healthier. Talk about a surprise!

The premise of diet programs is restriction. The premise of the 800 Gram Challenge is getting in a minimum of 800 Grams of fruit and vegetables a day into your diet (including potatoes!). When you weigh your produce, it is for the sole purpose of making sure that you EAT THE MINIMUM or more. What else can you eat during the challenge?

You can eat anything else you want. As in anything.

As in you won’t be hungry. As in your goal ISN’T changing the numbers on your scale when you weigh yourself, it is to FEEL BETTER. And, who doesn’t want to feel better?

It’s easy to do, you can go out to eat, you can eat on a weird schedule and you can eat late at night. Upset because of your child’s ARD meeting? You can eat if you want to. At the hospital again because your kid had another seizure? You won’t be doing that event drinking a portable shake or a bar that substitutes for food. Unless that’s what you want. Nothing is off limits, so you could. But why would you want to?

You can look at the link below for the full set of instructions. And I also recommend you Google it for even more information but take a look at this first. I have no affiliation with anyone and will make no money if you click on it, use it, reject it, or whatever. It’s just for your information.

https://optimizemenutrition.com/wp-content/uploads/2019/04/800gChallenge_OneSheet.pdf

Oh, a couple of more things that we added to the challenge, which you may want to incorporate into your plan. We allowed no alcohol for thirty days. It was encouraged that you drink half your body weight in ounces of water (I decided to just drink eight 8 oz. glasses a day). We tried to eat AT LEAST six different kinds of fruit and vegetables every day (eating the rainbow). Workouts were, of course, encouraged. Stretching and/or yoga for at least 10 minutes a day was separate from workouts (and FABULOUS for all of us stressed out caregivers with tight necks and backs from lifting our children, getting yanked, etc.). A minimum of seven hours of sleep was part of the challenge (As a caregiver, I often sleep that much but it is all broken up due to my son. We decided that, for me, if I accumulated 7, I was OK). And, finally, that you should try to be completely compliant to the meal plan. It is almost IMPOSSIBLE TO CHEAT on this plan. If you eat the 800 Grams, you are good, no matter what else you eat. Of course, if you want to lose weight, making healthier choices with the rest of the food will get you there. But, remember, you have already edged out some food you would normally take in during your day because of all the fruit and veg you are going to be eating.

This plan takes away everything I hate about dieting, even the focus on the scale. Because it is NOT A DIET. It is a WELLNESS PLAN. And, as a caregiver, it came along for me at exactly the right time. My goals have shifted. Yes, I would love to rock a bodycon dress and feel comfortable in a swimsuit but my real, number one goal? To be my best, strongest, healthiest self to care for my son with special needs.

Try it, for your own self care. Because when you take care of yourself, by extension, you take care of your special needs child better. And every caregiver wants that.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

I feel tired and sad. I want to take a nap, not that I need another reason. It’s a lot of pressure to do everything that we do as caregivers and also have to educate the world.

But if not us, who? Who will change the world for our children? Who will point out what can hurt them, words that are so ingrained in our society that people don’t even realize what they are saying?

So, what happened? A woman who I think is absolutely lovely, who was working hard at overcoming something that she personally feared, surrounded by strong women who were cheering her on, described her own fear of the situation thusly: “This is SO RETARDED.”

She meant that it was STUPID and SILLY that she felt what she was feeling. It was absolutely evident to me that her word choice was not meant to be a put down or a slight, in any way, of our amazing special needs community.

But it was.

What to do? I had to stop and really think about it in the moment. I took a step back from the group. Should I say something?

Of course I should. But…

-she didn’t really mean it as a put down.

-it was obvious to me that she had no idea that it was offensive.

-the space and place we were in was not a place where I wanted to talk about this, it was MY place to escape all this and do some self care.

-I was tired (but when am I not?).

-I had so much on my plate already, why do I HAVE TO BE THE ONE? (Because, if not me, who?)

I am very good at faking being extroverted but I am actually introverted with the addition of anxiety disorder. It is not easy for me to open this dialogue in the best of times. But, knowing this and having dealt with it before, I do have a sort of rehearsed, adaptable script.

I went for it.

I approached this amazing woman, who had no idea what was coming, and said, “Can I ask you a question?”

“Of course.”

I gathered up my nerve. “When you were working just now, you said, ‘This is SO RETARDED.’ What did you mean by that?”

I could see on her face that the light bulb hadn’t gone on yet that this might be an issue. She replied, “It was just so silly and stupid that I have this FEAR.”

“So, you used the work ‘RETARDED’ to mean stupid?” Still no change in her expression.

“I guess so, yeah,” she replied.

I dove in. “I was wondering if you could do me a favor. I am a special needs mom.” Here, her expression changed. NOW she saw what was coming.

I continued. “I am trying to change the world, one person at a time, for my son. I would ask that you consider using another word instead of retarded. I would love for my son to grow up in a world where he didn’t have to hear that in every day conversation. I’m not even asking you to commit to this change, but I would greatly appreciate it if you would just consider it.”

She said, “I didn’t mean anything by it. I hope you are not mad about it.”

I said, “I know you didn’t mean anything by it. I am not mad at you, I am mad at the world. So I want to change this, change the world. For my son. Would you consider changing the word?”

She said, “I absolutely will.”

I thanked her.

By asking someone to CONSIDER a change instead of DEMANDING it and explaining the reason why, I feel like the conversation is more effective. Also, approaching the situation with a kind and open heart (which is hard when you feel slighted) makes a huge difference. But, it’s still hard. Especially when you are living the special needs life, are perpetually tired, not always feeling patient and not always feeling up to the task.

I felt like it went as well as it could. Especially since, she really wasn’t even aware of how what she said could be taken (which is not always the case, some people are COMPLETELY aware of what a put down it is).

My beautiful eight year old son has nine different special needs diagnoses, but being stupid isn’t one of them. He is brilliant and beautiful and amazing and even when I am tired, I will try to change the world for him and everyone like him. They deserve to live in a world where their very existence is not a put down but a celebration of what they ARE able to do.

In a world of about nine billion people, one down. We only have 8,999,999,999 to go. I could use a hand if you are feeling up to the task.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

Our son, Kai, is turning eight years old next week and has nine different diagnoses. The big three are Duplicate Chromosome 16, PVL (periventricular leukomalacia, damaged white brain matter) and Autism.

Today my husband and I took Kai and his older sister Amaya, who just turned ten, to an event that was put on by the Crossfit that I attend. It was a fundraiser for one of the members, who is currently kicking cancer’s ass. It included a workout (which I opted out of, because we had the kids) as well as a lunch, live and silent auctions and sweets to buy. It also had some kid activities. Although it sounds fancy, it was put on in the afternoon at a local park. It was beautiful but also casual.

In the past we would have stayed home and not attended events like this. Or, one of us would stay home with Kai and the other would go and Amaya could choose. This was because we could never predict what would set Kai off, cause a meltdown, a tantrum, or other behavior that could be disruptive. However, in the last couple of years, we have gotten better at this as a family. And Kai is getting better at outings. So we went.

Kai travels in a wheelchair even though he has no physical need for one. What Kai needs is a safe place. And it was either a stroller that fits his body size, which starts at $1,000, or a wheelchair for $150. Since Kai is low functioning and is perfectly fine with sitting in the wheelchair, having no feelings about it whatsoever, we went with the more affordable option. He also travels with a tablet. Outings with the tablet to occupy him last way longer, go more smoothly and tend to reduce tantrums. I am aware that too much tablet time is unhealthy for him and am sorry to say that we have completely fallen into this hole that at some point we are going to have to dig ourselves out of. But, right now, he has the tablet almost all the time. In case you ever thought otherwise, we aren’t close to perfect at this gig. We also travel with a backup tablet for when the first one dies, a hotspot, a quick charger and a full backpack with diapers, wipes, food, changes of clothes, and lots, lots more.

Suffice to say that Kai did beautifully. He danced with me to the music that was playing, ate a piece of cake, allowed people to greet him (and gave some eye contact), and seemed to enjoy himself. But we also noticed that between the music, the lights that were strung up and the people, Kai was getting very stimulated. It was causing him to stim quite a bit. He was endlessly rocking, did some throat punching and got his parents to clap over and over.

When Kai began to give signs that he was starting to tire of being out (we call this running out of Kai minutes), we said our goodbyes and took our leave. We headed out to the van, got his wheelchair put away, Kai in his car seat, Amaya settled and off we went toward home.

And then Kai’s tablet died. Kai started to fuss and I switched the dead tablet out for a fully charged one.

All hell broke loose. Kai had a complete meltdown including crying, screaming, throwing down the new tablet, rocking, turning sideways and more. We weren’t sure why but we did know he was overstimulated and probably tired. We were about five minutes from home and tried to talk him down the whole way, to no avail.

When we pulled into our driveway, Kai refused to get out of the van. He was screaming and crying, his hands were over his ears and he was sideways. I reached in and picked up all seventy pounds of him (Thank you Crossfit! I didn’t get hurt. This is why I do it!) and carried his squirming, screaming body into the house and set him down on the couch. Daddy tried to soothe him, tried turning on the television, fought with him because Kai wanted to use a tablet that was dead, sang to him and more as I changed him out of his clothes, changed his diaper and put him in cozy, clean pajamas, with him wriggling and screaming all the while. Then I carried him into the bedroom.

Amaya waited it out in the other room while Mommy, Daddy and Kai worked to soothe Kai. We let him try to calm himself, talked softly to him, wrapped him in a favorite blanket and both Mommy and Daddy took turns singing with him. For about an hour. Until finally, Kai returned to us. And after all of this, Daddy went off and found a different tablet that had been sitting in the cabinet in the kitchen.

Want to know what set off this epic meltdown? The tablet that I had handed Kai in the car had a case around it that was an orangey-red color.

Kai wanted blue.

Had he not already been overstimulated and tired, Kai may have been able to signal the problem to me but he wasn’t capable of it at that point. So he did what he was able to do. He showed us, by melting down and having a tantrum, that there was a problem.

And then, it is up to Mommy and Daddy to figure out what that problem is.

Some of you reading this are thinking- what a hard, stressful situation! And some of you are thinking- wow, the tantrum lasted for only an hour? YOU GOT OFF EASY. MY KID CAN GO FOR DAYS.

Both of these perspectives are true.

After all of this, even though I am tired, I am grateful. We MADE SO MUCH PROGRESS. Yes, it is two steps forward and one step back. And yes, the epic meltdown/tantrum is exhausting and difficult (especially for Kai, who I feel so badly for when he is going through it – it can’t possibly feel good). But we were able to go out as a family! We weren’t able to do that for years.

If you are at the stage where you feel overwhelmed and exhausted, where you can’t imagine ever being a part of society again, please know that you aren’t alone. As you and your child grow,change and evolve together, it will get easier. You’ll find ways to make it happen.

I am so proud of you for everything that you are doing to be the best caregiver you can, even if today that only means that you showed up. Showing up is everything.

Two steps forward, and sometimes, one step back. You are still progressing. Focus on the progress and, as you are able, let the rest go. You’ve got this.

P.S. – Kai just started up again. Time for another round of rub the booty! And, pat the booty! Sigh.

Be well.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!