For those of you who are new to the blog, we (my sons and I) went GFCFSF about three years ago and consequently, kicked dairy to the curb.
After a few years “off the hooch”, you may find me eating a stick of butter on occasion.
It started rather innocuosly, about a year ago. I started making homemade ghee, which is basically claifiied butter with all the autism-scaring casein protein removed. And many, did it take the hell of GFCFSF cooking up a notch. I was making a batch every week or so.
And then, I added butter back in.
Then, grass-fed dairy.
The, cheese, oh cheese, your pea-protein CF vegan substitues can’t hold a candle. Well, maybe some of the cashew cheese from expensive vegan restaurants in my dear city, but my gosh, cheese. You’ve got a hold on me.
Well, not really.
I could quit it again without problem. If I could quit coffee, gluten, soda, and still live to tell about it?
Sidenote: I’m back on coffee again, just not pots of it. Not daily. And my adrenal glands like me better now.
So, why did I choose to put dairy back in?
1.) Reducing PUFAs (Polyunsaturated Fatty Acids) and other funky chemcial additives in the “alternative milks”. Carageenan alone is a reason to run from the cartons of almond and coconut milk. There’s some weird ass ingredients in the boxed store-bought milks, and I don’t think they are real food or necessarily good for you.
2.) Butyric acid is high in butter and good for the gut, yet, naysayers will scream “casein” and other inflammatories in milk to counter this point. But, I feel better, so that’s my barometer.
3.) My body temperature was sucking in th 97s and I was cold all the time, so adding dairy back in, according to ayuvedic principles, would warm me up. I’m toasty now, and metabolizing things so well.
4.) Homeopathy has brought a lot of healing to all involved in our household. The premise of the type of homeopathy we practice doesn’t restrict foods, so after a few years of giving GFCFSF the old college try, it was a temporary diet at best.
What does scare me is some of my family think this is tabula rasa for feeding my kids all the crap they can. I’m still the food police. There are some brands I trust, and some that I don’t.
I trust grass-fed over organic. Period.
So, for now, we are changing our diets yet again.
This is a marathon, not a sprint. We learn, screw up, and change things along the way.
Now, we approach a new school year with many changes and trepidation. A new teacher. Longer hours. Changes in therapists. We’ve reduced our ABA hours to 2 hours a day, and Moose is in school full day. We are continuing with CEASE homeopathy, clean living, and diet changes.
Now, that I take a step back, and truly look at how far we have come, and yet, how far we still have to go- there is hope. If you are a parent reaching this blog, I want you to muster up all you can and fight every day. Get up after what I hope is a long night’s rest, and put your boxing gloves on.
It’s been a long four years, but the improvements we’ve seen are profound. Merely, hearing the words “I love you” from Moose to both my husband and me is a colossal milestone.
Regardless, we are all a work-in-progress.
Here’s what I hope Moose will accomplish by this time next year.
I think all parents needs to do this for their children-special needs or not. It’s so easy to lose sight of our bigger goals and dreams with the chaos of everyday life. Lists keep me centers and focused.
Tomorrow, I will share my hopes for Monkey.
Please send your vibes, thoughts, and good prayers.
Last week, I was given a diagnosis by my ob/gyn that has forever changed my life. I was in Target with the boys, school supply shopping. My phone started buzzing in my purse, and it was one of those moments where the number looked familiar, but I was too busy making the kids laugh wearing this stupid Hulk mask.
(“selfie” taken moments before said phone call)
So, meh, I didn’t pick it up. I rarely talk on it. I never answer it.
By the way, the Hulk mask was the first toy Moose has ever thrown in the cart.
The voicemail beeped, and I figured hell, that semi-familiar number must be important. Probably a bill collector or something.
So, I checked it.
A nurse with a voice robotic and routine:
“Test results back…Positive…We need you to come in for more blood work….Genetic testing…We’d like to set up genetic counseling… Homocysteine levels. Kidneys and liver. More blood work.”
Here I am in Target. Sunglasses on, of course, as always, because I hate lights in stores. I throw the toys the boys are playing with in the cart, and make a beeline for the door.
Now mind, you I never buy them toys at Target, so you know I wasn’t thinking straight.
Shit. I don’t have a medical degree, and yet, guess who asked for this test? Me.
This was worse than the moment Moose was diagnosed with autism, because I knew that diagnosis was coming.
This, I didn’t. I was in the toy aisle at Target for Christsake. I learned about it on a voicemail. Why did I give them permission to leave test results on a voicemail? It’s like breaking up with someone on a text message or post-it note.
If I’ve learned anything from being an autism mom: ask the right questions, and you get the right answers.
I start cursing every doctor that ever tried to help me with over 25 years of migraine headaches. All of the dietary restrictions: no red wine, red meat, MSG, etc.All the bandaids skirting the CAUSE: All the pharma meds like Relpax and Imitrex and Midrin that make my heart feel like it was going to burst. All the days and nights I missed out on life, because I couldn’t see, couldn’t be by light, couldn’t bear smells, and the pain, I can still feel my brain pressing up against my skull.
I hope by sharing this story, some of you may take the leap and ask for this blood test, should your health history mirror mine.
I found out last week that I have a genetic mutation that doesn’t allow my body to absorb folic acid. It’s called MTHFR(not a dirty acronym-rather an acronym for methylenetetrahydrofolate reductase).
Say that three times fast.
I asked to be screened for the MTHFR gene given my family history. You know, kid with autism. Father dead at 54 of kidney failure. My history of migraines.
And jackpot. We have a winner.
I have a homozygous genetic mutation on the A1298C of the MTHFR. Homozygous is worse than heterozygous, because it means
1.) I have the gene from BOTH parents.
2.) Heterozygous genetic mutations means you could absorb 50-70% of what a person without the mutation can absorb of the critical folate. My mutation means…
10%. Because two defective genes is worse than having just one defective gene.
Only 10%. Which means, any prenatal vitamin I took during my pregnancies didn’t work, as my body will not absorb folic acid, only methylfolate, which is already converted. The MTHFR mutation means you can’t take regular folic acid and convert it to a form your body and brain use. Regular folic acid is poison to my body, which explains why my migraines cease 99% when I went gluten-free three years ago.
It’s wasn’t the gluten, it was the cheap version of folic acid added to the foods I ate several times each day.
All gluten-foods are fortified with FOLIC ACID. Oddly enough, my migraines began in 6th grade, which coincided with the government’s folic acid fortification program.
Oh, and 98% of kids on the autism spectrum also have a form of this MTHFR mutation. Which begs the questions, why isn’t this standard of care for all kids diagnosed to be screen for this?
Why isn’t this standard of care for any woman suffering from migraines? Why isn’t this screen prenatally given that roughly 30% of our population carries at least one defective MTHFR gene?
That means a good percentage of pregnant women popping prenatal vitamins are basically NOT absorbing critical nutrients!
The bottom line is most likely money. If doctors prescribe what is essentially a prescription b vitamin, we wouldn’t need those pricey MRIs, follow-up visits, overpriced migraine meds, now would we? Plus, genetic testing ain’t cheap.
I will play Pollyanna for a moment, and pretend “first do no harm” is a real edict. This MTHFR is relatively new, coming into the medical consciousness in about 2003. Understanding genetics and epigenetics is a new field. I get that.
But still. Prevention should be key here!
The good news is, my primary care doctor knows this issue inside and out. I’m off to see the wizard later this week.
Meanwhile, the nurse at my OB’s office couldn’t even pronounce the condition. Not exactly the person I want on my case.
This MTHFR genetic condition is treatable with prescription methylfolate and methylcobalamin, and changes in lifestyle. Which, obviously, I have spent the past three years becoming the organic food health police. Not exactly a job I was groomed for as a kid.
So, there’s blue skies.
But please, if someone you know and love suffers from migraines, do share this with them. If they have a kid on the spectrum, please share this with them. I don’t want my years of suffering with migraines to be in vain.
If this post helps one person avoid migraine headaches, or perhaps help their kid on the spectrum function a little bit better, I’m beyond grateful.
Most autism parents will tell you, how hard it is to “do normal things” at times with your kids in tow. Grocery shopping, a quick run to Target, or even a last-minute stop at the bank can led to nuclear meltdowns, and these simple errands are frankly more effort than they’re worth.
So many of us special needs moms and dads flee to the stores after bedtime, for peace, quiet, and wee bit of sanity.
Trips to “fun” places without help can launch a full on anxiety attack for me. The mere thought of lugging a tantruming 50 pound Moose refusing to walk with his equally heavy younger brother in tow, sounds like the makings of a really bad sitcom.
Often, times when friends invite me along for a fun day at the park!, or let’s take the kids to the zoo! or whatever, I pass. Or beg my mom to help.
Usually, I pass.
Events that also suck big time for us: birthday parties. Usually ten minutes into such events, Moose is begging to go home.
On a recent 100 degree day with 99% humidity here in Chicago, the unthinkable happened. It was too hot to do anything but this crazy idea I had. Nana was busy with friends, and a stretch of five hours stuck in an air-conditioned house with my two boys sounded insane.
So, I had a little conversation with myself: what’s the worst that could happen? Spend the money and throw them in the swagger wagon and go home, right?
One incredible change that occurred in my son Moose during the past year is his ability to sit through an entire movie. At the movie theatre. Without special accommodations in lighting and volume. In his seat, the entire time without tantrums or sensory overload. Moose sits entranced, soaking in what is a rite of passage of childhood: matinees with our family. Whenever school break hits, Moose asks for “movies”. Later this summer, the movie Planes hits theatres. We saw the trailer for Planes a few months back. Whenever there’s an underdog in the lead, I’m moved to tears. Moose, like the main character, Dusty, has his odds stacked against him. Without the ability to really communicate with those around him, Moose can seem less capable than other kids. Sure, Moose is making requests, but he still isn’t conversational.
People often assume Moose doesn’t understand those around him because he is quiet and withdrawn. Dusty, a single-propeller plane among the big shots, is underestimated as well. It’s really hard sometimes, when those “big shots” pass us on the street: those neurotypical five year old boys who zip along on their bikes pretending to be superheroes. I watch those big shots’ parents oblivious to the ease at which their sons can talk and ride a bike. I realize how different our parenting styles are. Autism doesn’t leave a lot of room for maybes and gray areas. Consistency and routine are something I’m complemented on often by Moose’s therapy team. My kids have a ton of love, but also a great deal of expectation and structure.
If Moose’s story tells us anything, it’s not to underestimate the underdog. That hard work truly pays off.
If a year can bring so much checked off our bucket list, by this time next year, I’m going to dream big for him. But, just as Dusty in Planes has a village of experts preparing him for the big race, we here on Team Moose are preparing Moose for life. It’s a village indeed between all his teachers, therapists, and ABA team, the amount of people caring for Moose’s progress is grand.
As his mother, I’m the mastermind behind every decision. School. Therapy. Diet. Doctors. The stress of being in charge of something so complicated is staggering at times. My husband is supportive, but given my background in education, he trusts my judgment the most. Before I had kids, I taught for seven years in Chicago. A few years I taught in a very tough gang-ridden neighborhood. I thought I had it rough then, it was a training ground for what was to come as a special needs parent. Just like the character Skipper in Planes, I considered myself an ace in my field. I understood children on a different level than most first-time parents, given the wide range of grade levels I taught and the fact I had my masters in elementary education by age 24. Plus, I spent a few years teaching junior high, so if anything; the teenage years don’t scare me now. Moose’s case of autism threw everything I knew into question.
All of the teaching methodologies I learned do not work with him. For years, we had to use a picture card system to communicate. I had to rethink everything I was taught and follow Moose’s lead.
In fact, he has been my best teacher yet, at a mere 5 years old. Like the character Skipper who left his dream career due to issues in combat, I had to leave teaching for health reasons just before I had Moose. Facing those personal hardships early on, before I had children, really prepared me for the challenges of special needs parenting. Leaving a career that I adored still bothers me, but without regaining my health and especially without all the lessons I’ve learned from being an autism mom, I would not be thriving as I am today.
Now armed with good health and a boatload of knowledge, I’m confident that this little underdog of mine will reach new heights.
How do you encourage your children to try new things and follow their dreams?
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We’ve come a long way, this past year. My big fat Hope since the time Moose was diagnosed with autism was that he would be on his way to mainstream kindergarten this fall. Maybe with an aide share. Maybe with pull-out for OT and Speech.
Many battles have been won. Potty-training. Sensory processing. Stomach issues.
But still remains…the withdrawl and his struggles with language beyond communicating his wants and needs.
We have it easier than many families. Moose is not aggressive. He never hurt others.
His type of autism is that of retreating into his own quiet world, a world that as his mom, I’m coming closer to understand.
So many of my friends on this journey have kids who will be skipping off to regular kindergarten in the fall, whereas Moose continues on with an instructional program, meaning, he’s in class with other kids with autism all day.
I’d be flat-out lying if I said that it didn’t bother me, because I wished that I could simply walk my son down the street two blocks to school to kindergarten. I’d be flat-out lying that I wish my biggest worry was balancing my kids’ super busy sports schedule this fall.
I remember when Moose was a newborn, walking the streets near the school he knew he’d attend for kindergarten. The community had built a kid-friendly garden, and I was smitten that I could still be in the city, and literally walk to school. I thought of all the wonderful picture books we’d read the summer before kindergarten, and how I would use the time in the preschool years to prep him as best I could. We’d color and craft, and there’d be unicorns and rainbows, and life would be a Pottery Barn Kids catalog.
Fast forward two years, when autism enters the picture, and the house of cards implodes.
Fast forward, three more years, and autism isn’t as a scary anymore, we’ve got this shit under control, minus the tons of debt and the stress, but my god, we’ve got this.
I just wanted that god blessed walk. Just that walk to kindergarten.
Next year, I will be the miserably over-caffeinated mom in the car at 7:10, fighting my way through Chicago’s rush hour for a parking spot at my kids’ school by 7:30. Which means, I think I will have to get the boys up at like 3:30 each morning.
All parents do the same thing, special needs or not. We compare our “preshus snowflakes”. Maybe your Colin is riding a bike at 2 and reading French, and my kid still won’t use a fork or write his name at age 6.
In the special needs community, there’s a race to normal, where you test out of therapy. Where mainstream is dangled in front of your face like a golden trophy- holy shit- here’s a taste of neurotypicalville. Where your kid just blends into all the other little kids standing in line at the playground, nary a symptom of autism abound.
Raising children is not a competition.
We all do the best we can, with what we have. Maybe your best some days is parking your kids in front of the television with a bag of Cheetos. Maybe your worst some days is charging clothes you can’t afford on your credit card, because you need something to take the pain away.
But I had to put this out there. I’m okay if our road is a little longer than others. I’m okay that we have to fight a little harder, and worry a little more.
Maybe’s it’s not kindergarten that we will walk to.
Something didn’t quite sit right with me, as I looked over the evaluation. The subscores for socialization and stereotypical behavior were of no concern. I glanced down at the subscore for communication. It was a score of borderline concern at best.
“This score doesn’t reflect autism to me. Could I have a copy of this screening to show my husband? He’s going to flip out.”
Ms. Nomer, the school psychologist, says, “No, you can’t.” My mind is spinning, and I know that’s illegal, that I can request any part of my children’s record at anytime.
She continues, “I would like someone from the district to run the ADOS test on him.” (The ADOS is the gold standard for autism diagnosis).
I felt like I was in one of those Muppet cartoons, watching her mouth move, everything was in slow motion. I consent to the diagnostic evaluation, and I don’t remember leaving, but I did.
Outside, I fall apart, weeping as I walk to the minivan. How could I have not seen this? I think back to all of Moose’s evaluations, and I know Monkey would pass them all. He has pretend play. Joint attention. He imitates.
Then, I realize what Ms. Nomer has run is merely a screening, NOT a clinical diagnostic. A big difference. Regardless, finding out the school ran this screening without my prior consent was maddening. I consented to diagnostics for OT and Speech, not autism.
I remember saying to Ms. Nomer: I‘m his mother. If I would have had any concerns about Monkey having autism, don’t you think I would have been banging down my developmental pediatrician’s door? Don’t you think I would have been the first to fight for services, given all we’ve been through with Moose?
My brain is reeling. I call friends who are school psychs and principals. I call my mom. My husband.
This wasn’t denial. I know autism. It has many degrees, but with all the families and children I’ve come to know in the past three years, I know autism when I see it.
Monkey may have other issues, but autism wasn’t one of them.
The entire weekend, I spend in a dark cloud. I’m irritable, can’t sleep. The following Monday, I receive a call from other psychologist in the district, Mr. Oz. He is going to run the ADOS on Monkey that afternoon.
I quickly pack the gluten-free and crap-free snacks, and head to school with the boys.
After observing Monkey, Mr. Oz takes us into the OT room to run the ADOS. Mr. Oz takes a ball on top of his head, and pretends to sneeze. Monkey imitates him. Monkey is charming, engaged, and following every directive given.
My heart soars watching the evaluation, because after sitting through these very same diagnostics with Moose two years earlier, I knew Monkey aced it.
He scores a ONE on the ADOS. You need an EIGHT to be considered even mildly autistic.
So, in short, much ado about nothing.
But, that doesn’t mean it’s over yet. There’s still the preschool screening he failed. There’s still an IEP looming. There’s still some mild delays in fine motor and receptive language.
Five days of my life were spent returning to the hell that is “life after diagnosis”. It’s a scary shitty place to be. I wish no parent would ever have to venture into that area. I wish I were rich enough to send every parent on an all-expenses paid vacation to gain some perspective.
Monkey. My youngest. The boy who I have been combing over searching for Signs of Anything Amiss since the day Moose was diagnosed with autism. All moms with kids on the spectrum get this. We are on Red Alert for every child we come in contact with. Our friends’ kids. The random kid in line at Whole Foods. The autism radar is always on.
Especially, for our own children.
Monkey, is the youngest in his class with a July birthday, so I was hesitant to start him in 3 year old preschool, but Moose’s school had a few kids move out of the 3 year old program, and Monkey started in mid-October.
By November, he had failed the preschool screening by a few points. Namely, he wasn’t attending to the questions asked, rather, remarking about penguins on the bulletin board than answering the questions from the screening.
So, the warning flags went up. His teacher said he is young, let’s give him a few months, and rescreen. So that we did.
But Monkey has skills! He knows his letters, numbers, colors, and shapes backward and forward. He has imaginative play! Joint attention! He talks in paragraphs. He has friends. Eye contact. Engagement. Interests.
Yet, at school, a different side of Monkey emerged. Distractable. Withdrawn at times. Difficult.
So, March rolls around, and rescreening happens.
Words of auditory processing. Sensory dysregulation. Holy shit, it’s happening again. I feel sick.
I knew in my heart it wasn’t autism, but something wasn’t right.
I consent to the domain meeting, which here in Chicago, is the precursor to the IEP process. Basically, the team gathers. The inquisition begins, and your child is put under a microscope by the school IEP team.
So, after meeting with the school social worker in May, answering the perfunctory questions about my normal birth and our boring home life, the school psychologist pulls me aside that same day.
She sits me down, takes a long swig of her supersized Diet Coke. She places an assessment in front of me.
“We think Monkey may be showing characteristics of autism”.