Tony Stark Should Not Have Children –

Posted on by notatypicalmom
4

Walking through the den I overheard a few snippets of dialogue from the show Thorin was watching. Tony Stark was explaining to a group of kids  the best place to attack their enemy with knives was at the joints. My thought was “WTF! How did Tony Stark get kids?”

I quickly changed the channel which was followed by the sound of whining – Thorin. Upon entering the kitchen, I said to Ward,  “Tony Stark should not have children!”

He totally agreed with me yet when I explained that the enemy in question was a robot he remarked authoritatively, “That would be the best way to defeat a robot. They would drop like a ton of bricks.”

I was taken a back. Does that mean Ward has given prior thought to defeating robots? I was hoping it was an in-the-moment-kind-of-comment.

For the uninitiated among you Tony Stark is a billionaire industrialist who owns Stark Industries. He created an armor suit that enables him to become the invincible superhero Iron Man.

Iron Man is one of the Avengers. The Avengers are a team of super heroes comprised of – but not limited to – Thor, Captain America and Hulk. They are the creation of Stan Lee and others in the Marvel family.

The Avengers live in comic books, in animated television movies and on-screen as live action characters. In film, Robert Downy Jr. plays the dual roles of Tony Stark and Iron Man. FYI – the first Iron Man film is the best. The second one has Mickey Rourke as the villainous Ivan Vanko (aka Whiplash) but it’s so talky Thorin and I had to fast-forward about 25 minutes of Tony’s existential journey. Snores Ville. But, I digress.

How did I come to know and love the Avengers? Thorin, of course. He and I made an unconscious pact of sorts. He would grow to love Project Runway – cheering for Mondo as loudly as I did. And – I would fall head over heels for “the Earth’s Mightiest Heroes”.

Thorin was on a parent-induced break from the regular Avengers because he hit me in the shoulder with his Thor (Nerf) hammer from across the room. He had been aiming for my head but I rolled forward to deflect the blow. (A very Avengers move I might add.)

He had been relegated to watching Dora the Explorer but Ward took pity on him and found The Next Avengers: Heroes of Tomorrow on Netflix (via ROKU). They are the offspring of the original Avengers. He thought it would be harmless enough – literally kid stuff. Who knew Tony Stark/Iron Man – a real anger management head case – would be the surrogate parent!

We play Avengers on a regular basis at the house. It basically involves making wild hand gestures accompanied by sounds like “AARRGH!” “Blam!” “Bwok!” “Thwogg!” “Klam!” “Bwoom!” and my personal favorite “Bweee!” We take turns falling on the floor in spasms or sometimes playing dead and bouncing back up for a grand finale.

May 4th is the release date for the highly anticipated film The Avengers. Nick Fury, director of the peacekeeping organization S.H.I.E.L.D. recruits Iron Man, the Hulk, Thor and Captain America to stop Thor’s brother Loki from destroying the earth. (Here’s the thing – Loki is really a frost giant!) The star-studded ensemble cast includes Downey, Chris Helmsworth, Scarlett Johansson and Mr. Samuel L. Jackson.

I can’t wait. The three of us have watched the movie trailers on-line – let’s just say more than once.

In preparation we watched Thor (2011, starring Helmsworth and Natalie Portman whose casting makes it almost high-brow) a few months ago. Loki was awesomely bad and fun to watch. Not as much fun as seeing Thor with his shirt off however. After the final credits there was a scene with Nick Fury (Jackson) where it is revealed that the trio of Avengers must unite! 

And – why do you watch all the credits in an Avengers film? Duh. Because every since Fury showed up in the post credits of the first Iron Man film you know to watch everything.

Obsessed much? Yes – we are all cuckoo for the Avengers.

Ward and I have talked about the three of us going to see it in the theater. My concern is that bringing Thorin puts us in the realm of the Tony Stark School of Parenting. Ward has reassured me we will not be the worse parents there. 

Avengers Assemble!

Tribes –

Posted on by notatypicalmom
4

This post does not reflect on the vast majority of the people in Thorin’s life who do not have Down syndrome or how he or Ward or I feel about them

Earlier this week I had a phone conversation with a father whose daughter has Down syndrome (DS). He described picking her up at  pre-school on many occasions to find her off on her own in the midst of larger and smaller groups of typical kids playing together.

I could relate. It is a scene I find Thorin in at his pre-school often. This father talked about how it made him feel to see her away from the others.

I told him I had the same feeling but I also saw Thorin didn’t seem unhappy playing alone. I said, “He’s good company for himself – something a lot of adults can’t say for themselves.”

He agreed. But we both acknowledged we still had that feeling. Actually, there are two feelings. One, you ache to see your child playing with other children as a full-fledged peer. Two, you wonder if they miss that experience, too.

Last night we went to the children’s museum. The local Down syndrome parents group had rented it out for the evening. Aside from attending conferences as a family this was our first foray at a DS family event.

There were children with DS who were babies up to ten or eleven years of age. They all shared particular characteristics – exquisite almond-shaped, slanted eyes and beautiful small, flattened noses. Most were on the small size but in this group Thorin didn’t stand out as the littlest. He was typical among these peers.

For the first time we saw him interact in a group where he didn’t need language as an entrée into the inner circle. Sure, there was talking, yelling, laughing, screaming and crying. (He did his fair shared of each.) But, if you couldn’t communicate verbally as well as someone else it didn’t exclude you from participating.

There was a small stage with a trunk of costumes children dipped into and become – knights, queens, floppy eared dogs and dinosaurs. Two children about ten years of age were in the process of staging a production. Thorin ambled over and joined them. He saw the play was taking turns introducing someone from behind the curtain. The spotlight was on each child for a period of time. The parents were seated in a mini audience area. We clapped enthusiastically for each performer. When it was Thorin’s turn his face beamed, he bowed and said, “Thank you! Thank you!”

I was laughing and clapping. The feeling I had was the antidote for the ache. I was witnessing complete acceptance for Thorin rather than a tenuous acceptance. This acceptance wasn’t just by his peers but by the parents. There was an unspoken kinship among us. I saw it in the way we adults looked at each other’s children.

Looking at so many children together with DS I saw they could be a separate race of people. They looked similar – which is different than they all look alike.

This morning Ward asked, “Do you think he knows he looks like them?”

Honestly, I don’t know. The same way I don’t know if he notices people stare at him on the street, on the playground, in restaurants, at the mall or any number of places.

What I do know is that for one night our son was one of them. He belonged.

The National Down Syndrome Congress uses what I think is an effective and apt message – “More alike than different”. Meaning people with Down syndrome are more like all people than they aren’t. But is that message is for us typicals more than anyone else? Do we need the reminder?

 

Throwy Peck -

Posted on by notatypicalmom
1

Thorin has been with us for just over three years or 1,068 days. Figure three meals a day – omitting snack time – and that represents 3,200 meals. Given those parameters I think it is safe to say he has thrown his plate, cup, silverware, food, juice, milk or any combination of those including numerous sundry items that are within reach of his place setting approximately a million times.

Ok, slight exaggeration. Currently, his incident with relation to meals probably results in an average episode every 3.5 meals. (He has slacked off significantly in the last year or so. His early average was probably 1.2)

Every meal is an opportunity for something getting thrown. At home Thorin drinks out of a covered cup with a straw to minimize spillage if said cup becomes a missile. I am reminded of the time I put his juice in a little coffee cup with Santa on the side of it. As a distraction from the fact it wasn’t a covered cup I said, “Hey, he’s our favorite guy Santa!” It all went well until Ward walked in the room and said, “Alright! A big boy cup!”

Sweet Jesus, Ward what are you thinking! Why call attention to the cup? That’s like waving a red cape in front of a bull. And – I said as much under my breath in another room out of earshot from Thorin. We walked back in the room and he dropped the cup and it’s contents on the floor.

His accomplishments have earned him the nickname “Throwy Peck” (aka Bendy Peck and Hammy Peck). Throwy is a bit of a misnomer. Aside from throwing objects he can reach over and ever so slightly knock over his juice, milk, etc to create a pool of liquid that I have come to realize has meaning in the way Nabokov in Bend Sinister uses puddles, ink stains and spilled milk to reflect among other things tenderness and beauty. Deep, uh? Well, I am trying to explain to you his puddles have depth.

But, I am getting ahead of myself. What has been my response to the puddles over the years? I have alternately ignored it, pretended it was an accident, gotten upset and while ineffective I have cried over spilled milk.

For a while I thought maybe it was Pavlovian. What was troubling is I thought he was training me with the unconditioned stimulus of throwing things to elicit a conditioned response. How frustrating for him that I kept changing my response.

Ward and I attended a conference for parents, providers and teachers of children with Down syndrome. The keynote speaker was from Boston’s Children’s Hospital. His practice is exclusively children with Down syndrome. The title of his speech was simply “Behavior”. His first question to the audience was “Does your child throw things?”

He also asked if they hit, pinched or yelled at other children. I forgot to mention Thorin is capable of hitting, pinching and yelling at other children. I know I sound like Charles Manson’s mother but he hasn’t really hurt anyone. His heart isn’t in it. You know, like a real creep.

Here is what we learned – children with delayed speech and language get upset by not being able to take part in the world of talkers.

It goes something like this:

-       No one realizes the sounds you are making is actual talking – throw something!

-       Everyone is talking to each other but not you – throw something!

-       You don’t know yet how to get Bobby to play with you – poke him!

Talk about your Oprah Aha! Moments.

He is telling us something.

His pools have depth.

As Ward and I have become what in speech language parlance is known as the “familiar listener” or the decoder of his speech we have more understanding and less frustration. Our home is not a place where he is competing to talk with 10 other kids and four teachers.

Thirty percent of children with Down syndrome have behavioral problems.* That is the statistic we learned. Why isn’t it seventy percentage of Typicals don’t take the time to engage the delayed talker?

We live in a world of talkers. Fast talkers at that. My advice – slow down.

*Thorin doesn’t have a behavioral problem so much as he has issues.

Bodily Functions –

Posted on by notatypicalmom
9

Before I met Ward I had never said the word “fart”. I mean never – ever. I couldn’t even stand hearing the word “fart”. I also hated the expression “Who cut the cheese?” My mom used the expression “passing gas”. It was tolerable but my thought was “Why even mention it?” I eventual started using the expression “breaking wind” which I think I read in a Louis L’amour western.

My brother used to save up his farts somehow until my sister and I were around and then let it rip. Big, stinky eye-watering farts.

Our dad said, “He only does it because it bothers you. Don’t let him know it bothers you.”

“Really?” How is that possible? The living room, which smelled like nothing, now smells like death. How to pretend that isn’t happening?

I am not sure I actually farted until I was about twenty. It slipped out and I was mortified. And – I was alone.

Ward broke me of my inhabitation to saying the word fart - mostly because he farted so much. He teased me mercilessly about the expression “breaking wind”. It was almost a practical decision. So, much faster to say, “Stop farting!” Then “Stop breaking wind!”

(His incessant farting didn’t start until about six months into our relationship. I don’t know what he did with them during that time. I am convinced “new relationship sex” had something to do with it.)

It was a minor but significant victory on his part to get me to say fart. I still don’t like farts though or poop or pee or snot. Or vomit.

Over the last several months our house has been a documentary version of John Waters Pink Flamingos (1972)* with farts, poop, pee, snot and vomit of varying degrees. Late winter a swift but violent flu swept through our household resulting in me being vomited on three times; Thorin’s potty training, means pee-and poop-in-the pants next to me on the couch; Coco-the-anxiety-induced-incontinent-lap-dog farts non-stop, has ghastly halitosis and given the opportunity eats poop; Walt-the-dog licks the floor non-stop and the dishes I used to keep on the low shelf; and, before we knew Thorin had a dairy intolerance we all lived with snot everywhere.

Today, after wrestling outside with Coco over a freshly laid turd I found Thorin in the bathroom washing his hair in the toilet. He had peed in it by himself beforehand though. Sort of a lose-win kind of situation.

Jung said, “What you resist persists.”

Sounds like my dad’s advice oh, so, many years ago.

* Pink Flamingos, starring Divine, follows the antics of competitors for the ’the filthiest people alive’ contest. The bar is set high with plating licking and feces eating.