A Capital Letter Syndrome Doesn’t Make a Child Less Than

Marching to the beat of his own drum.

I knew.  I knew from early on that my son marched to the beat of his own drum.  I tried to to make him march with the other kids.  I didn’t want him to think something was wrong with him.  I tried all the parenting advice and discipline techniques.  Nothing seemed to matter.  I was trying to force a square peg into a round hole.

A Capital Letter Syndrome Doesn't Make a Child Less Than

The school nightmare

School was a nightmare.  He’d burn up all his energy on trying to “be good” only to fail and fall short of the teacher’s expectations.  He never brought home that coveted green smiley on his behavioral chart that said it was a good day.  I could see it in his eyes, he felt less than.  Less than the other kids his age, less than good, less than what people want.  It broke my heart.  I hated that stinking behavioral chart.  I hated that people refused to try and understand my sweet boy.

Soon we realized that traditional public school made things worse.  When he was in third grade, my husband and I made the choice to homeschool all our children.  I will never forget the day early in our journey that he leaned against my shoulder and said “Thank you for homeschooling me, Mommy.  I felt so stupid in school”  I cried that day and still remember it so vividly.  I replay that memory when we’re having a rough day.

Being your Child’s Advocate

I knew that I was going to have to be my son’s biggest advocate.  From the time we got his SPD diagnosis in first grade until just recently, I’ve had to explain everything it means and what it doesn’t.  I’ve had to undo society’s idea of what perfect children should look like.  My son was perfect.  Exactly the way God made him.  Just because he doesn’t do everything like the masses doesn’t make him somehow less than.  I am actually proud that he doesn’t.  And now, even at 14 years old, I will still fight anyone that tries to force that square peg into that round hole….or lovingly point out how mistaken they are.  It’s a toss-up, really.  😉

Want to hear more of what Lori has to say on the subject? Listen to this week’s podcast episode:

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Lori Shaffer

Special Needs (Capital Letter Syndromes) and Homeschooling Director

Lori Shaffer is married to her childhood best friend, Jacob.  She is a stay at home missionary and homeschool mom to their three children.  She is passionate about advocating for teen moms and women and children that have been abused and giving them hope and encouragement.  Most days she can be found drinking coffee, working out with Kathleen, or hanging out with her family.

Follow Lori on Social Media:

Facebook- Lori Shaffer

Instagram –@browneyedmomof3

Instagram joint fitness account (Kathleen and Lori)-

@2girlsnotrunning

Should You Attend the Empowered to Connect Conference?

Remember that old commercial, “Silly Rabbit, Trix are for kids!” That rabbit never gives up, he keeps trying to capture his share of the sugary cereal.

That’s the same scenario that plays out when people see the banner, post or tweet about the Show Hope’s Empowered to Connect Conference (April 8th and 9th) They think, “Silly me, that conference is for foster and adoptive parents!” It’s not just for for adoptive/foster families. It may be for you:

 

If you counsel  families and children….

 

If you are a teacher…

If you are a judge….

If you are a psychologist, teacher, therapist, have a special needs child, have a specialization in child development, work with children on the spectrum or work with children on a daily basis, this conference is for YOU.

If you are scratching your head, wondering what T.B.R.I. (Trust Based Relational Intervention), watch this intro video and share!

If you are interested in attending the Show Hope Empowered to Connect Simulcast and you live in the Fairmont, Clarksburg, Bridgeport, Morgantown (WV) area, you can find more info here. If you would like to attend and live elsewhere, click here to find a location near you. Hope to see you April 8th and 9th at the Empowered to Connect Conference!

*For CEUS, make sure you register here. This is a separate registration than regular attendance and MUST be done online.

Kids on the Spectrum: Diet and the Inner Hulk

We were visiting my younger brother Jess in South Carolina and trying to decide what to take to eat at my niece’s swim meet. Brother Jess called around about pizza  and I settled on taking a gluten-free wrap for myself. I decided Rafal could take some SerenAid and eat the pizza.

“I don’t want you to get sick, Rafal,” Jess commented.

“Oh, I won’t. Mom will. I just eat gluten-free to keep my inner Hulk inside,” Rafal explained.

I have celiac and Rafal is on the spectrum.  He normally eats gluten free and dairy free. Once or twice a year he eats something with gluten. Once or twice a month, he has some dairy. I am kind of starting in the middle of the story. Rafal and I know what gluten and dairy do to him. I may know a tad more of the scientific stuff, but he has a firm grasp on the main point. It makes him act crazy and out of control.

He didn’t arrive at this summation/revelation over night. In fact, there were battles, major ones over food. He wanted to eat gluten. He wanted to eat whatever he wanted whenever he wanted. Especially sugar (that part is still true). Now I know why. You know how an alcoholic craves a drink? Well, a person with a yeasty, leaky gut craves sugar and simple carbohydrates, but I’m getting ahead of myself.

Why did I have Rafal go gluten free?

The more I read about kids on the spectrum, the more it became clear that there was a link to diet. I’m not saying that eating a certain diet has cured my child. It hasn’t. What it has done is make him feel more calm, more in control of his reactions. The green, angry Hulk doesn’t appear as much. The final decision to remove gluten and dairy from his diet came after reading Unraveling the Mystery of Autism and Pervasive Developmental Disorder by Karyn Seroussi. There are some weighty scientific studies quoted in this book and it can be overwhelming to read at first. Basically it says that children on spectrum may have leaky gut syndrome. It is common in children on the spectrum. They have opioid excess.

“Reichelt suggested that the source of these “opioids” could be peptides that result from incomplete breakdwon of certain foods, in particular casein from milk and gluten from wheat and other cereal products. It has been demonstrated that is casein or gluten are mixed with stomach enzymes, opioid peptides (known as casomorphins and gluteomorphins) will result. Normally, these would be broken down further into individual amino acids, but if the appropriate enzymes are not present or otherwise inhibited, the peptides will persist and could get out of the gastrointestinal trace and into the blood.”- Unraveling the Mystery of Autism and Pervasive Developmental Disorder by Karyn Seroussi

Milk and gluten acting as drugs, opiates because certain enzymes are missing. Hmmm. That was something to look into. If these opiates get to the brain, they have a widespread effect on the central nervous system similar to that of hallucinaogenic drugs. The result? Autisic behaviors or as Rafal calls it, the inner Hulk is released.

You can read more in Karen’s book:

autism book

How did I get my son to accept eating gluten free/dairy free?

There were two major habits that helped Rafal accept his change in diet. Number one, I bought him foods only he could eat. For example, he has his own box of cereal, his own granola bars, his own cookies, you get the idea. I had to sell the idea as something he was gaining, not something he was losing.

The second major habit that helped Rafal was my making treats at home, a lot. It is time consuming. It takes forethought. It’s worth it if he sticks to the diet. The best cookbook that is teen friendly, i.e. it has lots of sweet recipes that he loves is Cooking for Isaiah: Gluten-free and Dairy-Free Recipes for Easy, Delicious Meals. 

Cooking for Isiah

Some of his favorites are:

Gluten-Free Cheesecake-Stuffed Pumpkin Cupcakes:

pumpkin cheese cake
http://www.silvanaskitchen.com

Click on image for recipe.

I modify this recipe and sometimes skip the cheesecake middle and add chocolate chips instead. As I am typing this post, Rafal just asked if he could have one of these (made a few days ago). Silvana has an extensive list of yummy recipes on her website. I think I gained a pound just searching her site for this favorite.

Another fall favorite is Penny’s apple-brown sugar coffee cake, it is only in the cookbook.  Also,

  • cinnamon-toasted belgian waffles
  • any of the doughnuts
  • Isaiah’s gingerbread pancakes with apple-cinnamon slaw

Dinner favorites:

  • sloppy joe-stuffed potato skins
  • pizza
  •  oven-fried frito chicken fingers with honey-mustard dip (I could drink this dip, so yummy)

So, in other words, find some recipes your child loves. There are plenty of guten-free products on the shelves of your local grocery to fill in the gaps (Aldi has a fantastic selection), but homemade takes the cake every time.

Does Rafal eat gluten-free and dairy-free one hundred percent of the time?

No. He doesn’t. Ninety-eight percent of the time, he does. That gives him about a few days of cheating and I don’t mean all out binge eating. I mean a piece of pizza on vacation, then a month later some milk in something. He is pretty religious about it himself now. He didn’t used to be. He used to sneak things all the time, I could tell. Now he is touch with how it makes him feel.

If I know he is going to eat gluten or dairy, he takes two SerenAid tablets.

serenaid

” SerenAid® is specifically formulated to assist in breaking down the fullest range of plant and animal proteins, including casein (milk and dairy products), gluten (wheat, rye, oats, barley, and other grains), and soy proteins.”

SerenAid is a wonderful product, used in moderation. it won’t replace a gluten-free, dairy-free diet. It’s not an antidote for every day. It’s a safety net for when you fall off the tight-rope once in awhile.

To sum this post up in a few sentences:

  1. Gluten and dairy can behave as if they are hallucinaogenic drugs in a child who is on the spectrum.
  2. When you remove gluten and dairy, make sure your child feels as if you adding something. Find foods he loves. Take the time to bake.
  3. Try Serenaid for those times you just cannot avoid gluten and dairy.

*Disclaimer:  This post is not a paid endorsement of any of the above products. It is my experience and opinion only.  The Hulk was not harmed in any way, nor did we experiment with gluten or dairy in his actual diet. My son is not actually the Hulk.

 

When your Child on the Spectrum Needs a day off

Ania and I were packing up the cooler and getting ready to head out the door to hike at Cooper’s Rock State Park, about an hour from our home. Youngest son decided at the last minute he would rather stay home. I mentally went back over the week’s events before I gave him the okay. It had been a busy week. Two trips to the local fair, one for a few concerts (and some rides). another for barrel racing and demolition derby, an eye appointment with news that he needed glasses and helping his older college-age brother move in and get somewhat situated. I was tired from the long week, but not overwhelmed. I could tell he was. He normally loves climbing on rocks, but it wouldn’t have been a fun outing for him this time. He was overloaded.

Sometimes kids on the spectrum don’t want to come out of their comfort zone at all. They would rather stay home and stick to their routine, play Minecraft or other video games and not have the stress of social interaction. They may want company some days, but only if they call the shots. Company overwhelms them because it requires social interaction. If a child on the spectrum doesn’t know how to walk away from the bustle of an extended family gathering, he may shut down the next day. Kids on the spectrum don’t bounce back quickly from extended social time.

So, where do you draw the line? How do you balance outings with time away from the fray? It’s different with each child. It’s important for us parents to read the signals and help the child regulate. When he is able, he needs to recognize the signals with some help from parents before he can move on to self-regulation. Some kids on the spectrum will grow into adults who need a trusted friend or spouse to help them watch for the signs of overload. It’s not a weakness. It’s a strength.

Think of it like waves. The waves come on the shore, then they recede. When they recede,they gather strength to surge onto the sand again. Life is busier than it has ever been. Our schedules are full to the max and if we are not careful, we can push our kids on the spectrum to meltdown mania. They need time to de-stress. They may need a day off with no demands. If we make this a priority, it will not only benefit us, but the whole household will be happier, calmer.

barbed wire rest

If you feel as if your family is drowning in a busy schedule and your child or children meltdown all the time, you may need a rest day. Not a day to stay home and do a bunch of other stuff that requires them to participate, just a good old fashioned day off. One where a kid can lie on the ground and watch the clouds go by. One where a kid can build a blanket fort and read books with a flashlight. One where he can pretend for hours. A day to eat dinner on the back deck and stay there talking, laughing, waiting for the fireflies to make their evening debut. A day where the clock doesn’t dictate. A day where Mom can sit down and see all the things a kid has designed on Minecraft and listen, really listen. These sorts of days don’t just happen anymore. Years ago, when I was a child, they  did. Now we have to plan them.

Most kids are under too much stress these days. It’s not just kids on the spectrum who need a day off. We all do. Watch for the symptoms of stress in your kids on the spectrum. Be the regulator. Take your foot off the gas and just idle for a day. Stay home. Watch the grass grow. Walmart will still be there tomorrow. So will everything else. If you don’t do what you planned in pen on your calendar, will it really matter ten years from now? Kick off your shoes and help your child de-stress by being the example.

*If you need some help warming up your pretending gears, check out this book to get you and your child going-

I Missed It! (Three Word Wednesday)

This month we have extended our series on Autism. This post is for anyone who has ever suffered mom guilt (Tweet this). If you feel as if you missed it, it was staring you right in the face and you didn’t see it. I know. I’ve been there. Today I (Kathleen) want to make a huge confession about my eldest daughter (Audrey), she is most probably on the Autism spectrum and I totally missed it. It wasn’t until several years ago when she and I were researching Asperger’s Syndrome that I started seeing Audrey in the list of the symptoms. Tons of memories flooded in with an “aha” moment for each one.

For those of you have read my book Positive Adoption A Memoir, you may have seen some of the signs in my description of Audrey’s early years. I see them now. I didn’t then.

Some clues in my own words (book excerpts)

“I hiked up the carpeted stairs of the townhouse with baby Audrey slung over my shoulder. She slept until I stopped moving up and down like a human escalator. Then the crying began. Relentless, ear-piercing, you-are-not-going-to-sleep-all-night-mama-crying.

“She doesn’t like me!” I worried to Jerry. “My own baby doesn’t like me!”

Jerry’s job kept him away eighty hours a week. Some nights he stayed in a hotel close to work to grab a few hours of sleep before he began another shift. We owned one vehicle so I was alone with Audrey ninety percent of the time. My dreams of motherhood had come crashing down over my head in a deep depressing darkness.

The few times Audrey smiled, I snapped a photo.

“I think you brought the wrong baby home from the hospital,” my brother-in-law teased.” 

The not smiling, not engaging, not satisfied until moving should have been signs. I didn’t see it. I had no clue. Audrey was my first child and I didn’t have  some one else to measure her by.

Another clue:

“Audrey was a square peg in a round-pegged world. She cried when other babies smiled. She slept little. I received loads of free parenting advice from friends and family who had compliant text-book babies. None of it worked for Audrey, so I chucked it.  

At five and a half months, she could crawl up stairs. At one year old, Audrey could do a puzzle, take the laces out of her shoes and re-lace them, flip out of her crib and land on her feet. At four years old she could read, at six she won a story-writing contest but had one of her frequent bouts of pneumonia and couldn’t attend her own celebration.

I was frequently scolded by adult family members who wanted me to put Audrey in her place.  The truth is, Audrey was smarter than them (fact-wise) and she didn’t have the filter to tell her to keep her mouth shut about it. “

Kids on the spectrum are like square pegs in a round pegged world. Something is different about them. Not bad, just different. As I said the other day, they are honest. They don’t read social cues well. Audrey didn’t know it wasn’t socially acceptable to correct her aunts and uncles when they had facts wrong. Audrey has an amazing ability to read or hear something once and remember it. Most of us don’t have that ability and we may remember bits and pieces of something and she has always been a stickler for exactness. I didn’t know this was a sign. I was so busy treating her physical symptoms that I didn’t hone in on the tells. To me, this was just Audrey.

square pegs

Thankfully, Audrey is high functioning. She managed her childhood pretty well. She didn’t like hugs or anyone touching her face. She had obsessions, it is who she is. She seemed to live on a different plane or in a different universe. I chalked it up to her being an eccentric genius. She and a friend spent hours creating a Tolkien inspired world complete with a creation story and language.

The good news is that is was no surprise to God. He didn’t miss anything and where I messed up, He liberally poured out His grace and covered me and my child. For those of you who are experiencing a season of guilt over what you did or didn’t do, I challenge you to take some time to look back and see the hand of God. Trace your story line to those moments when you feel as if you failed and God showed up to pick up the pieces. Maybe he provided a friend who supported you. Maybe he sent someone to pray with you or take you out for a cup of coffee. It may be that you have spent years feeling guilty and you haven’t taken the time to look for the grace God covered you and your child with. Take a moment now and ask Him to show you the infusion of grace He poured out in your past. It’s only in forgiving ourselves, putting the guilt to the side that we can move forward into healing (Tweet this).

If you suspect that your child is on the spectrum or that he doesn’t fit in, he hones in on one thing, he obsesses, highly intelligent but doesn’t read social cues, has a large vocabulary at an early age or none at all, doesn’t like to play with toys or only plays with one kind of toy, doesn’t need other kids to play with, has sleep issues and won’t let an issue go, maybe check into some more research or talk to someone. This is not an official list or medically approved list. It’s my list. Sometimes the lists on medical sites are hard to interpret, hopefully mine helps.

I did miss it, but God caught it. I see His grace prints in my life and hers. When I question why, I see Audrey comforting and parenting with understanding. I watch her encourage other Moms and I know, God has it under control. He didn’t miss a thing.

Linking up with Kristin Hill Taylor at TWWbutton200x200_zps62610d74