After a really bad week at school and diminishing skills, a Google search revealed Tosh is probably experiencing yeast overgrowth. His pediatrician has suspected this for awhile.
The Specific Carbohydrate Diet, which regulates gut flora and relieves IBS, has also been shown to improve speech, behavior and cognitive function in 80%-85% of autistic children. I used the TACA website to check it out.
So we're giving it a try.
The SCD is kind of keto and kind of paleo; it's entirely free of grains, starches, processed sugar and most dairy products. However, it does allow fruit which is important for us, because orange juice and smoothies are where I hide Tosh's supplements. I think fresh fruit is important for a healthy diet and since we live out in the desert, we need the hydration that raw produce provides. Not to mention the important enzymes!
Day 1 of the SCD (I'm doing it too) began with grain-free pancakes. I got the recipe from Primally Inspired, a fantastic resource for paleo recipes and general lifestyle/wellness tips.
From Primally Inspired
Makes 14 pancakes (next time I will halve the recipe - it was two much for both of us)
Prep time: 5 mins
Cook time: 10 mins
Total time: 15 mins
These pancakes of course don't taste like pancakes made with gluten. They have a bit of an eggy texture and you can definitely taste the coconut. Since Tosh doesn't eat eggs or coconut, I had ZERO expectations. I also left the blueberries out of his because he's a plain pancake guy.
I figured he would sniff them or maybe put one bite up to his mouth and walk away.
But he didn't. HE ATE 10 BITES! That's like an entire pancake!
You might also like: Grain-free cinnamon bun muffins
Trying new foods tips for autistic kids
Tosh eats a pretty sophisticated diet compared to his peers. Here are some tips I've picked up along the way that work for him.
1. Keep your expectations low and be patient. Expect they won't eat it the first time. Offer the food AT LEAST 10 times before you give up. I offered Tosh fresh green juices for an entire year before he finally started drinking them along with me. This is a long game, not a quick fix.
2. Include them in the prep. It really helps give Tosh a sense of ownership when I let him help in the kitchen. Even when he doesn't like something, he's anxious to try it because it's "his".
3. Act like it's no big deal. I don't stand expectantly over Tosh, waiting for him to try something. I set the plate in front of him and walk off or focus on my own meal. Your odds of getting a kid to do anything are much higher if they think it's their idea. I tell him he doesn't have to eat it, which works as reverse psychology on him. And if he doesn't eat it, I don't make a big deal about it.
4. Allow time for taste buds to adjust. You can't take a kid from McDonald's to vegan overnight. The palette needs time to change. When we took Tosh off gluten and dairy two years ago, it took him a couple of weeks before he started eating the substitutes.
5. Eat it yourself. Don't expect your kid to go gluten free or paleo while you're eating Ritz crackers. That's just mean.
Tosh's dad and I separated more than three years ago. We've come a long way as friends and sometimes we still have our differences.
But when it comes to Tosh, we've always worked as a team.
According to the CDC National Center for Health Statistics, between 1970 and 1980 the number of divorces per year increased from 500,000 to almost 1,250,000. It averaged that number until the mid-1990s, and has since steadily fallen to a current rate of about 800,000.
Gen X was the first generation of children to experience widespread divorce rates, and the traumas we experienced still haunt us. I think that's why so many of us are good co-parents. We know first hand how divorce can affect children, and we are doing our best to use our experience to reduce the trauma for our own children.
Tosh's dad and I have stumbled along the way, but there are three key things we have committed to doing in order to maintain a healthy co-parenting relationship.
1. We respect each other's strengths.
I'm a Type A personality, which means I'm good at making money, filling out paperwork and creating the consistent environment kids need. Tosh's dad is a personal trainer and high school basketball coach, and he's done an amazing job improving Tosh's gross motor skills. We're both into natural health and nutrition, but he's more disciplined when it comes to feeding Tosh a clean diet. He'll roast the chicken and steam the veggies when he's tired; I rely too much on my Grubhub app. He also does a good job with the manly stuff - he's the one who potty trained Tosh, taught him to get his hair cut at a barber and has helped him overcome his fear of dogs and cats.
At times we have focused too much on the other's weaknesses. But we always come around to appreciating the other person's strengths. The positive attitude is not only good for Tosh, it's good for the whole family.
2. We don't use Tosh as a weapon.
There have been times we've both attempted to disrupt the other person's custody schedule. We're only human, and humans get mad, get hurt, and lash out. But we've learned to call each other on our bullshit, and after a reasonable cooling off period, we have always realized the other person is right.
This is where the perspective of a child of divorce comes in handy. Kids don't care if one parent inconvenienced the other or the child support is late. All they know is they don't see their Mom or Dad when they want to. And being kids, they assume Mom or Dad doesn't want to see them. Tosh has enough challenges in life. Feeling unloved by a parent is a trauma he will never experience because we rise above our own egos to consider his feelings.
3. We spend time together as a family.
I usually throw Tosh a big birthday party, and include his Dad, Grandma and other relatives from Dad's side of the family each year. We have also both attended family get togethers on his Dad's side (my family doesn't live nearby). With the exception of this last Christmas, Dad also either spends the night or comes over early to be with Tosh when he wakes up and opens his presents.
Recently, we've started eating out together as a family every other week or so. I got this idea from a divorced friend who does the same thing for her son, who is roughly the same age as Tosh. She posted about it in her blog and emphasized that even though she and her ex are no longer married, to her son, they are still his family.
Just because the marriage failed doesn't mean the family has to fail, too. Because look at that happy face! He's worth the effort.
I just returned home from a dream vacation to Scotland, my first trip beyond North America. It was so empowering to travel such a great distance. To say I’ve expanded my horizons is an understatement.
Little did I know that expansion would continue when I returned home to find a river running through my garage. A pipe burst in a wall while I was gone, and I wrote most of this from a coffee shop because my water was shut off and a crew of seven ripped out walls, ceiling and a door. The photo above is me in my guest bathroom with the culprit, that bent copper pipe.
In the past, this would have been a catastrophic event. But I’m relatively unaffected. In fact, it’s kind of exciting.
I’ve been wanting to remodel my home for a couple of years, but I’ve never progressed beyond watching Flip or Flop reruns. I’ve been afraid because I’ve never worked with a contractor before.
Now I don’t have a choice. I have to work with a contractor. The universe has a way of forcing you to expand your horizons. Rather than bemoan my misfortune, I’m grateful for the opportunity to grow.
And the great part is, it’s covered by insurance. It's like contractor training wheels.
How did I manage to turn this situation around? The answer to that question begins with why you think we’re here. The meaning of life.
I believe our experiences in this life, on this planet, are designed to refine our souls. And don’t most spiritual belief systems support that idea? Whether you believe in a religion that includes end-of-life judgment, or a religion that includes reincarnation, or even quantum physics, there is one common thread: every day presents several opportunities to shape our destiny.
Here’s a story about the day I first made that realization. It was almost exactly 20 years ago, right after I bought my first new car. It was a gorgeous red Jetta, one of the special Wolfsburg models that were built in Germany.
One day, I was driving around LA and I tried to change lanes as someone else was trying to enter the same lane. I almost hit them. A loud voice in my head said, SLOW DOWN. It was weird, like the voice wasn’t my own thought, but a warning from somewhere or someone else. But, being in my 20s with a kick ass new car that was built to drive on the Autobahn, I didn’t listen.
Less than a mile later, as I was crossing an intersection, an old lady ran a red light and darted in front of me. I couldn’t stop in time and we collided. I had just wrecked my first new car, only four months after I had bought it.
Not long afterward, I realized that had I listened to that voice, I wouldn’t have been in a wreck. Maybe the lane changing incident earlier was a warning. Or maybe it was a test, and the wreck was my big fat cosmic F. Either way, I knew I had been given a warning, and I ignored it. It wasn’t a coincidence.
Ever since then, I’ve looked at delays and unexpected events differently. It’s okay to feel a little disappointment or even anger when things don’t go as planned, but it’s important to let it go and look at the situation from a positive perspective. Whether it’s a red light when you’re running late, a burst pipe while you’re on vacation or a disabled child, there is always a positive perspective.
I don’t know why it’s positive for Tosh that he has autism, but I can say without a doubt that his disability is the best thing that’s ever happened to me. Before he was born, I should have developed better organizational skills, the courage to pursue self employment and the patience of an adult. But I didn’t. So, the universe shoved me into the deep end of the skills pool.
Learn this shit, the universe lovingly said. You need it.
So I did. In the process, I’ve become the person I’ve always dreamed I could be. Am I am so thankful!
Changing the way you think isn’t easy, but it gets easier with practice. If you’ve ever successfully changed a habit – like if you've quit smoking or learned to count to 10 before losing your temper – you’re already halfway there. Become aware of your negativity, catch yourself and turn it around.
Here are some positive mindset strategies that have helped me:
You didn’t think you were the kind of person who cared what people thought about you.
And then your kid was diagnosed with autism.
You’re not ashamed of your child – you’re truly not – and yet, when you’re out in public and people stare or say ignorant, rude things, your cheeks flush and tears well up in your eyes.
Recently I read that fear of judgment is rooted in guilt and shame. That statement really hit home for me because over the past year, my sensitivity to people who judge Tosh and me in public has decreased significantly.
Reading that statement made me realize why. It happened right after I became aware of some traumas I had experienced that related to his autism.
Judging from the feedback I’ve received from this week’s IGTV episode on this subject, my experience is common among parents of autistic children. Maybe it will resonate with you and help you tune out others so you can better enjoy your public family time.
Trauma #1: I blamed myself for Tosh’s autism
The more I talk about this with other parents, the more I realize we all do this. You know what I’m talking about, that ONE AWFUL THING you did that caused your child’s autism. No matter how many times doctors, friends and family or even research tells you that you’re not to blame, you just can’t shake the feeling it’s your fault. You made a stupid, horrific mistake that harmed the person you love most in the world. It’s no wonder I felt shame whenever someone noticed Tosh’s autism. I believed it was my fault.
Trauma #2: I was ashamed of my spectrum behaviors
I say this all the time – autism is genetic, and chances are pretty good that at least one parent has some sensory issues, social impairments, repetitive or restrictive behaviors and/or challenges with executive functioning.
And chances are pretty good that back when you were a kid, nobody knew anything about ASD or the fact that these symptoms were physical, and not the result of bad behavior.
I remember being scolded for what I now know are spectrum behaviors. I was overly sensitive, immature, forgetful and had sensitivities to texture, smell and sound. But it was the 70s and 80s, and my parents had no idea about autism. It’s not like they could read blogs on the topic or order books off Amazon. My mom worked as an aide in special education, and I don’t remember her ever saying one word about autism. Heck, hyperactivity was a brand new concept back then.
But even though it’s not my parents’ fault, it was still traumatic. I was shamed for behaviors I couldn’t control.
Everyone experiences childhood trauma. Because mine was rooted in feeling ashamed of my spectrum behaviors, it triggered emotional reactions whenever anyone directed the same at Tosh.
Then there are the traumas everyone has: experiences that made you feel like you weren’t good enough. We carry those traumas everywhere we go and judge everything we do through them, including parenting. You know this one applies to you if you assume that your child’s behavior makes everyone around you think you’re a bad parent.
So what can you do about it? My favorite release method is to write down everything I’m feeling. Don’t worry about spelling or grammar or even if it makes sense. Just get those feelings out of your body and onto paper.
When you’re done, take it outside and burn that muphuka.
Take a deep breath as you watch your pain turn into smoke and float away. You’ll feel better right away, but you may not be completely healed. Releasing trauma is a process. Feel free to repeat this exercise as often as needed, or find your own way to acknowledge and release your buried feelings.
It also helps to remind yourself that not everyone who stares is judging you. All animals turn to look at anything that makes a loud, sudden noise. It’s a survival instinct. Other people might have an autistic family member and are scanning your child to see if you’re a member of their tribe. Once I released my shame and raised my head proudly when I took Tosh out, I realized a lot of people weren’t judging us. They were smiling!
As they should. After all, he is pretty damn cute. 😁
School starts two weeks from today, and both Tosh and I are really looking forward to it.
However, for many parents of autistic children, a new school year produces feelings of fear, dread and guilt.
I used to be one of those parents. I feared Tosh wasn’t being taught the academic knowledge and skills he will need to become the best possible version of himself. I dreaded the new negative behaviors he would pick up from other students. And I felt guilty that I wasn’t doing more to provide him with a better education.
In Spring of 2017, I did something about it. Fed up with what a lack of academic progress in Tosh’s neighborhood public school, I enrolled him in a charter school that didn’t have facilities to support small classroom special ed. That meant he would be 100% mainstreamed.
The exposure to neurotypical kids provided Tosh with invaluable positive behavior modeling. After just the first week, he was a different boy. The most obvious improvement was increased self-sufficiency. Suddenly, he wanted to do everything by himself. I could also see he was trying harder to control the volume of his voice and socialize appropriately.
Ultimately, a 100% mainstream environment was too much. After peaking in September, his behavior became more aggressive and problematic, and by the end of the school year, it was obvious we had to make a change.
But I didn’t feel discouraged. I felt confident.
We had learned that Tosh couldn’t handle a mainstream environment all day long, but exposure to mainstream students supported his educational goals. Thanks to the charter school’s IEP, written before we transferred back to public school, that benefit was in writing, supported by quantifiable reporting.
We had also learned that we have options, and we aren’t afraid to explore them. We returned to our public school system, but we could have continued at the charter school with a combination of home study and on-campus education. We also could have put our application in with a private school that specializes in autism. Those options are still there, if we change our mind again.
When we returned to our local school district, I exercised my right to an intradistrict transfer and placed him in a different school. It has been a completely different – read better – experience.
The administration at his new school is more supportive of special education and doesn’t micromanage it. Before, at our IEP meetings, every single request I made was shut down by the principal, who declared, “sorry, we don’t have the resources for that.” He didn’t even have resources for commonly accepted accommodations required by law. “So sue me,” seemed to be his strategy.
At our new school, the principal didn’t even attend Tosh’s IEP meeting and my requests were met with a team brainstorm of ways to make them happen. I didn’t get everything I asked for exactly the way I wanted, but we truly share the goal of educating Tosh, and that’s all that matters.
To be honest, much of the improvement came from within me. Armed with more knowledge about the special education process, the confidence to ask for what Tosh needs and a better understanding of my role in his success, I built a better foundation.
Here are my tips as you look forward to another school year.
Heather Anderson is a blissfully happy autism mom and lover of life in Southern California who is on a mission to help autism parents rediscover their happy place.
Please join me on this beautiful autism journey. The Autism Oasis is a fun, supportive and educational community where your personal development is just as important as your children's. You are more than just a caregiver!