I don't hate your neurotypical child

Really, I don't. Hate him or her, I mean.

Is it HATE? Is it ENVY? Does it even matter?

Have I lost you already with the word neurotypical? I'm sorry, it's all part of my post diagnosis vocabulary, let's call it. Basically it means a person who doesn't have atypical neurology according to Wikipedia. I know I've been incredibly quiet over here since the diagnosis, so you might need a quick refresher on the Tripped Up Family and our unique challenges with our all girl triplets. We've struggled with speech delays and milestone delays with our triplets, noticed by us since they were about a year old and by 18 months old we sought help through our state programming. As we continued to work through the delays and other interesting behavior, it became clear that we were probably dealing with more than just the "they're triplets" and "they were preemies" excuses could account for. We pushed hard for answers and now we know that two of our triplets are on the autism spectrum with a diagnosis of classic autism. Today at 4-1/2 years old, Angel and Princess triplets are still mostly non-verbal and show plenty of stereotypical autistic behaviors. You can't miss the diagnosis anymore at all. Meanwhile their neurotypical triplet sister Sunshine has overcome her speech delays (the triplet & preemie explanation is very plausible here) and will be joining a general education class by this fall if all goes well.

Okay, consider yourself caught up.

Let's get back to hatred, or lack thereof. Hatred of neurotypical children, specifically yours. Only I don't, hate, I mean. Right, I don't hate your neurotypical child, after all, I have two neurotypical children of my own right here in the Tripped Up Castle and I love them immensely. I don't hate my kids with autism either, although I think I can safely say I do hate the autism itself. Sorry if I offended anyone in the autism community with that, but there it is, that's the fact.

I hate how every day I see kids learn and grow and say the cutest things and make everyone smile, while two of my triplets struggle with the simplest of communication, like saying "Mommy" or "Daddy" or "I want drink."

I don't begrudge the success of your neurotypical children - I celebrate them! Just like I celebrate the successes of Lotte and Sunshine triplet. I will admit, however, that in every celebration of success there's an inner struggle for me as I wonder, "will my Princess and Angel triplets ever reach that goal or one similar to it?" Will I ever just smile in wonderment with them as they show me some amazing feat they've accomplished? And the answer comes, I just don't know.

According to one of the teachers at the girls' school, a typically developing child has to repeat a skill 1 to 200 times before it becomes a learned behavior. With special needs kids, you can ramp that high number up to 2000 repetitions. And the kicker? We don't know exactly what or when our kids will learn or what or when they'll actually retain. We don't know what skills may always remain elusive for them. We live our lives trying to presume competence, trying to have high enough expectations, knowing that if we don't, then we aren't helping them to reach their full potential. It's a constant struggle, and you feel like you can never let up, otherwise you'll fail your child forever. Trust me, as a parent with special needs kids, I've become an expert at piling up the guilt on myself, been doing it for years now.

Sometimes I really want to let go of the pressure and the strain and just enjoy the marvelous wonder of my children - each and every one of them. I find I can easily do this with Lotte and Sunshine, but it's almost as if I'm afraid to let go with Princess or Angel. It all comes down to a fear of losing ground in the basics of what we have right now. The good stuff that is happening. If I'm not constantly focusing, will she forget how to use a sentence strip? Will she stop reaching out and holding my hand at dinner? Will she stop singing with me? Will she decide stimming is more important than trying to communicate?

I used to be the type of parent who believed strongly in "let kids be kids," let them play and experience, let them set the agenda. It fit my spontaneous personality quite well. As a family with triplets, and two of those triplets with classic autism, spontaneity has disappeared and been replaced by a never-ending structure. Simple parenting has been replaced by a strange mix of guiding/therapy/teaching/hoping/loving that always requires more than you ever thought you had, and you're always worried there isn't enough.

No, I don't hate your neurotypical children. Really, I don't, but in the middle of Autism Awareness Month, I do find myself still grieving the lack of typical neurology that exists for two of my children. Sometimes green eyes are pretty, sometimes they're not, and envious eyes are probably some of the ugliest around. Bear with me as I work through the grief and anger of still coming to terms with this diagnosis and what it means to our whole family.

A Tripped Up New Year

On Wisconsin, On Wisconsin! 

Watching Rose Parade, ramping up for Badger football, Daddy making enchiladas, Mimosas for Mama, and triplets making a huge mess of the living room. Lotte playing with sisters and managing to watch over the neighbors' dogs too.If we're lucky there will be a nap at about 2 p.m. and the Christmas tree/lights/ornament-laden wall garland will be put away by end of night. This is a true Tripped Up New Year's Day. Happy New Year to you all!

The hope of babble breaks

Princess triplet surprised me yesterday when I realized her normal babble of "Princeeze" had actually broken into "I didn't do it, I didn't do it" in English. It took a second or two to realize that's a line from The Polar Express which she hasn't seen in a week or so. Rather than say this is an autistic behavior of random language usage, I'm choosing to believe she was actually asking to watch the movie. Does an out of context full sentence count as a child using sentences? Maybe not, but it does give me room for hope.

Hope is one thing I've really started to embrace in this land of special needs where I live and raise my kids. It's always a little different in families where there are kids with special needs and as parents we can often feel isolated (usually not in a good way). Lately I've been trying hard to switch my perspective on the toughest parts of the daily parenting experience of kids with autism (of preschoolers with autism, of triplets - 2 of whom seem to be in perpetual toddlerhood). Switching my perspective means looking at the things that drive me crazy, switching the lens, and choosing to see a benefit within the struggle itself. Suddenly this lens change, this change of perspective has brought me more into hope overall. It's also allowed me to see that as a special needs parent, I get to hugely celebrate the littlest milestones of my kids without anyone groaning. Nobody minds when we throw hopeful parties over here.

So yesterday's (and today's so far) hopeful party was all because of a break in babble, a break in babble into English.

And guess what? It doesn't matter how irritating that kid is in The Polar Express who repeatedly says, "I didn't do it." I can hear that from my Princess triplet for the next 2 days straight and be really excited about beginning speech patterns every single time.

Up to my ears

Click here to get Images & Strawberries Pictures - Pictures

in berries!

My wonderful mother-in-law knows how much her granddaughters love strawberries. Yesterday she made sure we got 4 quarts of ripe berries that need to be used fairly quickly. Since my girls like muffins and the like, I started poking around for a yummy strawberry muffin recipe. Here's what hit our fancy this morning. And I think strawberry cream cheese spread might be awesome instead of butter :-)

A few notes: I used olive oil instead of canola. I added some milk because it seemed way too dry. Others on the allrecipes.com site chose to reduce the amount of flour. I also saw later that others had added some vanilla into the mix, and I wish I had thought to do that. I also added some flax seed meal in the mix for its overall health benefits. For me, the recipe filled a standard 12-cup muffin pan, and we still have 5 muffins left for later this week. In this large family home, I really LOVE recipes that are easy to double, but I don't like to double on the first try. This one is a keeper, and I will double it the next time.

Strawberry Muffins

Source: allrecipes.com

Course: Breads

Serves: 8

Ingredients

• 1/4 cup canola oil
• 1/2 cup milk
• 1 egg
• 1/2 teaspoon salt
• 2 teaspoons baking powder
• 1/2 cup white sugar
• 1 3/4 cups all-purpose flour
• 1 cup chopped strawberries

Directions

1. Preheat oven to 375 degrees F (190 degrees C) oil an 8 cup muffin tin, or use paper liners.
2. In a small bowl, combine oil, milk, and egg. Beat lightly. In a large bowl, mix flour, salt, baking powder and sugar. Toss in chopped strawberries and stir to coat with flour. Pour in milk mixture and stir together.
3. Fill muffin cups. Bake at 375 degrees F (190 degrees C) for 25 minutes, or until the tops bounce back from the touch. Cool 10 minutes and remove from pans.

Amount Per Serving
Calories: 233
Fat: 8.2g
Cholesterol: 28mg
Sodium: 283mg
Carbohydrate: 35.9g
Fiber: 1.1g
Protein: 4.2g

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The dreaded A word

Stress and the Tripped Up Family seem to go together like peas and carrots, as Forest Gump would say. It's right up there in the header, in the mathematical problem we use to describe us. (3 cats + 1 teen girl + ggg toddler triplets + 1 computer geek dad + 1 writer mom) When you add all of our variables up, even on our best days, we end up with a medium to high stress quotient. And now we just walked some more stressors right in through the front door, or perhaps we just better defined ones that have been here for a while.


I've been tipping my hand on Twitter with this but haven't blogged about it because we didn't have any official statement. Now we do. Yes, the A word is part of our world. Can you guess it? Since April is Autism Awareness Month, it's probably not a huge leap to go to the word autism. Yes, you'd be right with that thought, although sometimes I think it can also be Anger, Anxiety, Apprehension, Alarm, Aversion and many other adjectives describing the mixed emotions of getting an autism diagnosis.


Since the triplets were about 15 months old, I've had concerns about their speech development and actually other potential delays. Ultimately we contacted the Early Intervention group in our state to see if there were delays. Indeed there were. We began the suggested programs for them at 19 months. We've been actively involved with the Early Childhood Special Education programs in our public school district ever since and our entry point with all of this was the label Early Childhood Developmental Delay for all three.

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The dreaded A word has always been in the back of my head. We mentioned it here and there to various professionals connected to our kids, but until recently, were always told things like: "they're triplets," "they were preemies," "they probably have their own language," "they'll catch up," "every child progresses at their own rate" etc. If only it were that easy. Finally, I saw an article with a list of autism symptoms in bullet points, and I realized that our Princess triplet had some levels of every single one. Additionally, our Angel triplet also had some of the symptoms. My head was filled with raging questions: Why do we assume they're exempt from autism again? Why is that word never brought up by any of the professionals working with us again? This led Tripped Up Daddy and me into a new season of more dedicated advocacy for our children, which brought us to an autism center where we received a provisional Autism Spectrum Disorder diagnosis for both Princess and Angel triplets.

So there it is, the A word. There really wasn't any shock connected with it. In some ways, there was relief. At last, I could acknowledge there was something going on beyond the "they're triplets" and "they aren't parented the same way as singletons are." (A fancy way of saying - you're not a great parent, but you have triplets so we can't really fault you too much) Finally, I could cut myself a break and realize it wasn't because it's impossible to parent multiples utilizing the best practice techniques that child educators, pediatricians, child psychologists and speech pathologists recommend for singletons. I could stop blaming myself for the lack of one-on-one time, for too much PBS or other TV, for not providing enough freedom for them earlier to encourage exploration, and on and on and on.(Oh by the way, if there are best practice parenting techniques for parenting multiples, somebody send me the list or link, I'm afraid I've lost my copy).

In mid February we changed the preschool for Angel and Princess triplets to one where they will have more intensive services. We're already seeing improvements in regard to an interest in socialization and attempts at communication. These are positive signs. Our little girls need additional intensive therapy that our insurance currently will not cover, but because of some changes in Michigan law, we expect it to be covered in January. We hope we can provide enough early intervention through school and at home in the meantime so Angel and Princess will have the best possible outcomes.

The dreaded A word in our world comes with a lot of baggage. I'm realizing lately that I can choose for that A word to be Awesome and Amazing as I look at the progress my daughters make each day. For they do make progress and because of how much work each step takes, we have the opportunity to celebrate much more often than you might with a neurotypical child. (NT for short - you see, I'm already learning a whole new language with this diagnosis.)

I have much to learn about autism itself and how it presents in each of my daughters. You know the old saying "if you've seen one, you've seen them all?" Autism is not like that. If you've met a person with autism, you can say, "I've met one person with autism and seen it manifested in one way." The recent statistics from the CDC say 1 in 88 children have autism - 1 in 252 girls more specifically. Each of those cases is incredibly unique - just as unique as our Princess is from Angel.