Picture by Ryan Benyi
I often get asked how did I know L was on the Autism Spectrum and the answer is, I didn't. I knew something was "different" with him though. We were in a playgroup in Seattle from the time that L was 6 months old, up until we left Seattle to come back to the east coast. For 4 years we met these other mamas, who became my best friends, and their kids each week and all of the kids were the same age. It was an incredible experience as a first time mom. You were a part of every child's first moments; first steps, first tooth, first words. And right around two years old all the other kids in the playgroup began to talk and string words together in small sentences. As they played they began to use those sentences with each other. L had words but not really sentences. He wasn't stringing words together the same way that the other kids were.
I expressed concern to my pediatrician and family members and everyone kept consoling me that some kids are "just late talkers." But in my gut I knew it had to be something else. Right around that time our second son, Z, was born and our "no TV rule" that we so proudly stuck to was thrown away as I was exhausted and needed 30 minutes to stick L in front of something so I could breastfeed. He became obsessed with the Thomas the Tank Engine show and Bob the Builder. Within 5 minutes of turning off the TV he would grab his trains or his Fisher Price Little People and reenact the entire episode word for word! The kid who wasn't speaking in sentences, but yet could memorize a 30 minute television show. It wasn't making sense.
I would lay down on the floor next to him getting my face close to his as he would roll one train back and forth, in one place, reciting the lines from the Thomas the Tank Engine show that he just watched with the correct emotional emphasis. I would lay there and look into his eyes, which were somewhere else, listening to him talk. I could say his name repeatedly within five inches of his face and he wouldn't react, the only way to get him back into the present moment was to deliver the wrong line. Since I watched the show with him, I knew the plot so I would interject and it would immediately snap him out of it. He would look into my eyes as though he hadn't seen me there before and then he'd furrow his little brow and say, "No mommy!"
These memorized lines from television shows became his language and he would use them in real life to communicate. When he wanted something to drink he used a line from Bob the Builder, "Want a spot of Tea? Why yes, I'd love one." As an exhausted mother of two I rolled with it and began to understand my son in a way that I didn't before, we had a language now to use together. Friends and family members thought it adorable and hilarious when this little 3 year old could instantly talk in a British accent and deliver a funny line in order to get more water in his sippy cup. That line, "Want a spot of tea?" would later be the line that would have me sobbing on the floor and doubting myself.
Once we moved to the east coast we began seeing an incredible speech therapist who informed me that I needed to stop obliging L with his memorized script, she called it echolalia and it's also referred to as scripting which can be a form of stemming for kids on the Autism Spectrum. My homework assignment was every time that L said "Want a spot of tea?" in order to ask for more water in his sippy cup to look him in the eye and tell him to say "L, say I want water please."
L would look at me confused, lifting his sippy cup higher in the air. "Want a spot of tea?!?!"
"Say, I want water, please."
"Spot of tea!!!", L would begin to get tears in his eyes and a confused look on his face.
"I want water, please.", I would repeat.
"Spot of tea!", yelling and with tears now streaming down his face.
He would stomp his feet and eventually throw himself on the floor, a sobbing mess mumbling "spot of tea...spot of tea..." At this point the baby would be crying as well. This would happen several times a day. The same exchange of lines. The same amount of tears.
The speech therapist told me to be consistent, she reaffirmed our goals each week and insisted that though it's hard it will be worth it. "Hard" is not the word I would use to describe it accurately, torturous would be a better word. To stand there and repeat the line you want your child to say while he cries and looks so confused, not understanding why I am not going along with the ususal script. It was emotional torture. But in my intellectual mind, I knew it was for the best in order for him to develop appropriate language communication. I wasn't perfect in the process, I caved several times. I'd give in because I didn't have the fight in me that day. But I always regretted it later knowing that I wasn't helping him by continuing to allow him to use scripted language. And then there would be the moments when neither one of us would back down and the result would be L and I intertwined in a hug sobbing on the kitchen floor holding on to each other as though our lives depended on it. As we each mumbled "water", "spot of tea.", "water", "spot of tea."
That's what Autism looked like in our house in the very beginning. It was beyond hard, both for him and me. But we did the hard work of early intervention therapies and looking back now, he's about to turn 14 and recently accepted into the National Junior Honor Society, all of those moments of sobbing on the kitchen floor were totally worth it!
Photo by Kate Remmer
A few weeks ago our church held their annual youth led service. The children of the church of various ages from kindergarten to high school design the service, choose the songs and the readings and then conduct the service themselves. And on this particular Sunday four teenaged girls each wrote a part of the sermon. The theme was "Loss" and each girl stood in front of a rather large gathering of familiar faces and strangers within this city church and spoke her truth. Expressing the idea of loss in various ways from death to leaving a country.
The part of the sermon that has stuck with me, weeks later, was the young woman who spoke of loss in terms of divorce. She bravely shared with the congregation and expressed herself so eloquently about her personal struggles navigating her parent's divorce. How, now as a high schooler, the simple act of filling out forms that require having to write an address would cause her to have a panic attack. When she saw the line "Address" on a form; her heart would race and her breath became shallow. She shared that she lives equally at both houses, yet on these forms there is only room for one address. And her mind begins to spin "What address should I write?, Will mom get upset if I write dad's address? Will dad's feeling be hurt if I don't choose his?". On the edge of my seat waiting for her to disclose exactly which one she choose, which house did she feel compelled to write down?
She never said and I still wonder weeks later how my boys will deal with this same situation. See my children are not yet of the age where they are filling out paperwork for themselves, I am still doing it for them. Maybe my boys won't care or won't give it a second thought when they have to fill out the address line on a form. Maybe the address they put in will be the address that they live at on that particular week or maybe like the only phone number they have memorized (mine) they will automatically put in my house address since we are the ones that coach them on knowing the information.
My ex and I share custody and the kids rotate between the two houses on a weekly basis. We practically share a backyard, the kids can just walk over to the other house when they have forgotten something that they need. I've tried so hard to make the divorce easy for my kids and have taken great care in remaining neutral and never putting the kids between their dad and I. But as they grow up I think to the future and wonder which house will they choose to spend Thanksgiving at when they are adults? Will they continue to alternate the holidays as they do now? And though I think that I've made the divorce easy on them, does their heart speak differently? Will they someday stand in front of the church and tell a story of being torn between two worlds?
As parents we constantly wonder, am I doing this right? We read parenting books, we take parenting classes to learn how to navigate a new stage or development, we surround ourselves with other parents just like us and yet as we stare at the ceiling willing ourselves to fall asleep our minds racing from thought to thought and we ask ourselves.....am I doing this right?
I love a recipe that I can cook and only use one large, deep skillet. Not only is this recipe equipped with an easy clean up but it tastes delicious as well. The original recipe is from Budget Bytes and please go over to her site and look around, there are so many amazing recipes on her site! I adjusted the recipe to fit my needs and what we had on hand in our house. That's the beauty of cooking and being inspired by other bloggers, you can take something and turn it into a different version of what you like or the supplies that are in your fridge. So go ahead, try my version or compare my version with the original and see if you can find somewhere in the middle that fits your family and what's inside your fridge- it's so much fun!
So here is my take on Budget Byte's Greek Turkey and Rice Skillet. This version serves 8.
- 1 pound ground beef: we had organic ground beef in the fridge so I used that in place of the ground turkey.
- 3 tablespoons minced garlic, I buy this in bulk (in a jar) from Costco.
- 2 tsp dried oregano
- 2 cups long grain white rice
- 10oz. frozen box of chopped spinach, you don't have to thaw!
- 1 cup cherry tomatoes sliced in half
- 3 cups of chicken stock
- 1 tablespoon dried parsley
- 1/4 cup lemon juice
- 1 oz feta cheese
- Super Greens Organic Girl salad greens; or any type of spinach or spring mix
- salt and pepper to taste
Using a large very deep skillet, ground the beef until cooked through. Drain out the excess fat and add the rice, the chicken stock, the spinach and the tomatoes. Stir to combine as best you can and cover till it begins to boil on medium/high heat. Once it's boiling, uncover and stir again, chop up the spinach so it's not a big block in the center of the skillet. Lower the temperature so that it continues to boil and cover for 15 minutes. Uncover and take a taste test to be sure that the rice is done. If needed add a wee bit more of stock or water to cook further but if the rice is done go ahead and turn off the heat. Add the lemon juice, oregano and parsley, salt and pepper and stir.
Place a handful of salad greens on each plate and spoon the rice mixture on top (I served about 1 cup per person), sprinkle with feta cheese. ENJOY!