In Memoriam and a sad reminder

I am writing this as part of an event created by the writers of Flappiness Is and Adventures in Extreme Parenting, called “An Outpouring of Love for the Mikaela Lynch Family.” It is stated in the description of this event, “We want to flood social media with love for the Lynch family and those who have suffered similar losses — under the cruel scrutiny of media and those who judge without knowing of what they speak.”

Mikaela went missing and was found days later, having drowned. In the same week, two other children, Drew Howell, age 2, and Owen Black, age 8, also passed under similar circumstances.

There are horrible statistics regarding children with Autism. One quote I read was that “48% of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings.” I’ve also learned that 91% of deaths for children with Autism are from drowning.

What happened in the Lynch, Howell and Black families happens all too often. And unfortunately, parents and caregivers are often unfairly scrutinized, despite the fact that many have set up many safety precautions to attempt to prevent just that horror from happening. Many people also are unaware of the dangers, that there is this prevalence of wandering and  lessened awareness of danger.

We recently put a simple lock on our back gate, after Nathaniel learned to open the regular latch and began to head out. He often prefers to go out front & walk around the neighborhood over playing in the backyard. Fortunately, he was not able to do so unobserved, so he was not lost for a moment. Plus, he is generally clingy, so I can hope that if he did walk out alone, he’d come back for us or call for us before going far. We have no water near us – no one has an inground pool nearby of which we are aware, there are no waterways within a comfortable walking distance. But we live on a busy cut-through by busier streets & a major highway. Nathaniel will attempt to walk into the street if something attracts his attention. My last walk with him around the neighborhood jangled my nerves – he kept wanting to cross streets & each time we’d begin to cross, he’d wrench his hand away & try to head away down the middle of the street, stopping & planting himself when I grabbed his hand again. I had to immediately sweep him up & carry him across, with him protesting all the way. He’s only 3 – he may learn better any time soon – or perhaps not. We may have to get a more complicated lock system someday. Or he may learn that there are boundaries and they are for his safety. Either way, I’ve gained a new perspective when it comes to what families can go through.

If you ever see a young child alone & it seems off to you, it can’t hurt to take a moment to make sure he or she is okay. If someone in your neighborhood has a child who you know has an ASD, be mindful if you see him or her alone. Children can learn how to undo locks, climb fences. We all turn our backs for a moment sometimes & that’s all it can take for many children.


Feeling adventurous

So Nat was feeling a little adventurous today, apparently.

Lately, he’s not been touching most of the stuff I put in his bag for lunch/snack at school. I’d kind of run out of feasible ideas, based on the time he has for eating, the limited foods that he accepts, his self-feeding skills (good with some things, not so much with others) & that there’s no microwave available. So I posted on a community FB page that I was looking for some new ideas – and was provided with some really helpful stuff. Therefore, last night, I went to the supermarket & bought a few new things to try. I’ve spent a small fortune over the past couple years with food experimentation on this kid.

The first food I tried for his lunch was a package of (relatively not horrible for you) PB sandwich crackers. He’d never had them before – but he likes some snacks that are like crackers & we go through PB like crazy, as he has it on bread or waffles daily (as do I). So this isn’t a huge stretch, but you never know what he will see as horrid. I put a note in for his teacher, to let her know that he’d never had these before, so she might have to show them to him & tell him about them – he probably wouldn’t ask for her to open them on his own. Surprise, surprise – he wanted them immediately & did eat some at school, as well as later at home.

After school, Daddy took Nat to our favorite playground. Playgrounds are iffy with Nat. If it’s crowded, chances are that he won’t want to do much of anything. If it’s empty, he’s much more active. Today, it was decently empty. He wanted to try the monkey bars & rings with no prompting. I used to take him to a toddler indoor gymnastics class – he never wanted to touch that kind of stuff back then – he got better with some of the apparatus there, but with a couple exceptions, he wasn’t having it.

Playground-edit(Future Olympic Gold Medalist on Rings)

About a week ago, I’d suggested French toast for breakfast out of desperation, because Nat was refusing all his usual breakfast foods. I’d made French toast plenty of times before, but it has been a good long while, so I was surprised when he wanted it when I offered it – and he’d asked for it a few times after. With the way he’s been eating lately, if he eats half a slice, I consider it a victory (and hey, more for me!). Tonight for dinner before I got home from work, Nat asked for – and ate – a whole slice of French toast that Eric made!

Then, while I was out of the room this evening, Nat saw a commercial for a toddler fruit puree squeeze pouch. We’ve seen that particular commercial about a billion times. Plus, I’ve offered him those things before & after having tried a teeny sip of a few, he lost interest. I buy them and, when he’s not looking, squeeze them into the rectangular puree containers that he accepts – mainly b/c some fruit blends no longer come in the (cheaper) rectangular ones (thank goodness for coupons).  Anyway, Nat saw that commercial again tonight & demanded one. Eric grabbed one out of the pantry – and to his surprise, Nat sucked down the entire thing, as if he does it on a regular basis.

Last bit of adventurousness that I just remembered. Last night, completely out of nowhere, Nat whimpered that he wanted an egg sandwich. He was pretty much whimpering, whining everything last night – I think the good ladies at his daycare were mistaken about how much he slept at naptime. Anyway. Out of the blue, he asked for an egg sandwich. This is odd because we don’t typically eat egg sandwiches at home – we did a lot before he was born, actually, but not since. And he was adamant. He didn’t want just eggs (which isn’t that odd lately for him to request, even if he often eats one or two bites & is “all done”) – he wanted an “egg sandwich.” So Eric made him one. When it was all ready, Nat demanded that syrup be put on it. Maple syrup. And he was on the verge of freakout when we resisted (thinking, this will not taste good). So, a little bit of syrup went on. He ate one bite, declared it yummy, ate another bite…and “ALL DONE!”. Hey, at least he tried something new, right? Why an egg sandwich with maple syrup, I may never know. Although, I polished off the rest & it wasn’t half bad.



Looking on the bright side

This is going to be another long one. I think I have come to grips with the fact that I cannot post often, but I’ll make up for that in being way too wordy for the posts I do.

So today’s Mother’s Day. It’s only my 3rd Mother’s Day as a mom – I still sometimes forget that I get stuff on Mother’s Day.

Nathaniel made me some very neat crafts in daycare this past week that besides that they were cute ideas by the daycare, they showed how far Nat’s come in his own creative & drawing skills (no, he’s no prodigy, but he is drawing & decorating stuff with definite purpose). Yesterday, Eric cleaned the downstairs beautifully in preparation for his mom coming over for dinner, which he also cooked & cleaned up and I got to just relax all yesterday evening & some of the afternoon (some because I had my own cleaning to do as well). Eric cleans way more often than me & lately has been cooking more often as well, so I am not implying that I am usually slave to the grind of housework & cooking & I got a huge once a year break from it. I truly do appreciate it & wish I were a neater, more organized person, so it wasn’t so difficult for him to keep up with my mess. 🙂 Today, for actual Mother’s Day, my brother made a delicious brunch for his lovely wife, me & our amazing mom (and everyone else attached got to enjoy it too by default) and we spent a nice time together. And afterward while Nathaniel napped (following a tantrum beginning to spiral into meltdown because he did not want to nap or let go of me (Daddy is the nap guy, but not today, it would seem – I eventually gave in & hugged & rocked him on my lap until he was ready to let go)), I got a little gardening done.

This past Friday was also my 11th wedding anniversary, so I got additional spoilage by receiving gorgeous flowers at work from my lovely hubby and my parents gifted us with a bottle of delicious sparkling rose wine & all different kinds of cheese to sample, which we over-indulged on Friday night as our dinner while watching an old James Bond movie on TV with the sound turned down (because Nathaniel has supersonic hearing & would stir whenever we put the volume above level 2). Yeah, we’re fancy.

But the weekend was also a whine-a-thon by Nathaniel – a demanding, bossy, constant mind-changing, serious whine-a-thon weekend. He was wonderful when we were others this weekend, but man, there were some points that I came so, so close to literally banging my head into a table or wall. I can hear his whine of “no-oooo!” in my head still & he’s been in bed for 1.5 hours.

(His pronunciation is getting much better, but for some of these things, this is a translation):

An example from this morning: “Want pots & pans!” (play cookware) “Okay, but clean up your cars first.” (He had out about 25 Matchbox sized cars, which he had walked away from). “No-ooo! Want pots & pans!” “Clean up your cars first, then pots & pans” and repeat about 10 more times. And then as he reached where the cars were, he decided he wanted to continue playing with them & didn’t ask for the pots & pans again.

The rest of this weekend was also filled with the usual demands & refusals:

“Want fruit juice!” (PediaSure Clear Tropical) “Want Daddy Baba!” (milk in a large sippy cup) “Want paint!” (My reply to each being, “You have to eat breakfast first.”) “No breakfast!” “No eat!” “Nooo-oooo!” “Want FRUIT JUICE!” “WANT PAINT! PAI-AINT!” “Don’t wanna nap!” “No nap!” “Nooooo-oooooo!!!!!” “MOMMY!” “MAAAAA-MEEEEEE!” We also had our transition issues with things like: “Wanna go [some place] NOW!” but when it’s time to leave: “Don’t wanna go [same place]!” and us saying that it’s time for say, dinner (and therefore, time to stop what you’re doing right now): “NO DINNER! NO EAT!” after he had shown interest in having that same meal earlier.


But, back to the bright side of things:

Most everyone I know has probably already heard this story, but it still makes me smile.

Last year, Nathaniel had a speech therapist whose therapy room had a bronze sculpture of a hand making the ASL sign for “I love you.” Nathaniel was often looking at it & wanting it to be brought down so he could see it. He also tried to make his hand make the sign, but couldn’t quite coordinate it. He also could not speak nearly as much back then & would sometimes have a difficult time even making us understand that he wanted the sculpture down from the shelf to look at.

This past Wednesday, Nathaniel’s part-time daycare had the kids make a craft that was a paper hand cut into that ASL sign, painted & put in a little flowerpot, so that the hand looks like a flower, as well as the sign for “I love you.” It’s adorable. Apparently, they also taught the kids how to do that sign that day. I had only seen the pot & that was all I knew of the project. As I was carrying him up to bed that night, he was being quite cute, (as he often is right before bed after having probably been quite ornery earlier), so I kissed him & said, “I love my Nathaniel.” And Eric said, “Do you love your Mommy? Can you say, ‘I love you, Mommy?'” And Nathaniel smiled, mumbled “I love you” and signed it as well – the first time I’d ever seen him be able to sign it – and he did it perfectly in context & was clearly proud of himself for being able to do it. I kissed & hugged & congratulated him a bunch of times & he continued to sign it repeatedly during bedtime stories.

Now as if that isn’t sweet enough, I emailed his daycare to tell them about it & how much it meant to me & the story behind his prior fascination with the sign & attempts to be able to make it. They emailed me back with this (I made a few slight changes, in order to subtract the name of the daycare):

Thank you so much for sharing your story with us. It truly touched our hearts! 

You have a beautiful boy in Nathaniel and thank you for sharing him with us! Right before we read your email, we were doing cards for Mother’s Day and Nathaniel was the only one to pick all red hearts for you.  He was smiling the whole time he was working on it.

Your story is exactly why we love our job and enjoy teaching each and everyone of our guys and gals.”


Minute to Minute Mommy celebrates 1000 Ausome Things #AutismPositivity2013

‘Things are not always what they seem in this place. So, you can’t take anything for granted.” – The Worm, Labyrinth

I’m not going to sugar coat everything and I am not always going to be politically correct. Before moving forward in this post, I will say that for me, having an Autistic child can be a real roller coaster – with extreme highs and lows and everything in between.

But there’s one huge and awesome thing that Autism has taught me – never take anything for granted. And I will say now that not taking so much for granted is a GOOD thing. In fact, at this point in my family’s life, in my own opinion, it’s the best thing about Autism.

Prior to Nathaniel being born, I had some loose, vague ideas of how I envisioned his infancy, toddler-hood and childhood, etc. I thought about holiday traditions and playing in fall leaves, picking dandelions, sledding in snow, stuff like that. I don’t have a long history of many babies or young children in my life, so I didn’t think I had any real firm idea of how I wanted it all to be.

Until I watched, mostly via Facebook, how other people’s children, born around the same time as my own, grew along a different path. I saw the things they did as families, the places they went, the things they experienced that seemed so different from my little family. I never knew much about early childhood development; I just assumed my child would develop along pretty much the same path as others’.

But I’ve gained some perspective, through my own experience and through reading the experiences of others who have children with special needs and through reading the writing of those with Autism, Cerebral Palsy, intellectual disabilities and physical disabilities. I have really come to realize that NOBODY knows how their child is going to develop or how their life will play out. Whatever notions we might have about our futures, about our children’s futures, about our friends’ and other family members’ futures – it’s all up in the air. My little family’s life is always evolving and changing. I have absolutely no idea what the next month will hold, let alone the next year or two or 10. Yeah, it’d be nice to have a crystal ball at times to save oneself a bit of anxiety, but none of us have that. I don’t think I fully appreciated that before.

The ability to communicate has been one of the biggest things I no longer take for granted. Nathaniel started talking, albeit in one syllable approximations, late last spring/early last summer, when he was a little over 2 years old, after not having a single word and only having a slight grasp of using two different signs, “more” and “all done.” He could point, but it was sort of vague (his pointing when he wants something across the room is still not the best – I think he doesn’t realize that my line of sight isn’t identical to his). He was frustrated and often unhappy and on edge, as were we, because we could not understand him and we wanted so desperately to understand. But once we began to learn more about his delays, about his diagnosis, we found therapists who could help. Then, on the way to talking, he quickly learned how to use a picture exchange book, which helped lessen some of the frustration he was having & that was also our frustration, in wanting to help. Now, he has more words than I could begin to count, he can say “more” and “all done,” he is speaking in sentences and except when he’s flustered or not feeling well, he can do a decent job of getting across to us what he needs and wants – his words can be hard to understand at times, but we’re getting there. And he can understand us better, as his vocabulary expands. He understands not to touch certain things, because they’re hot, so now he can be in the kitchen when we cook or bake. He knows what it means to be “cold,” or “comfortable.” To some, this may seem like no big deal – but to me, it’s all completely awesome. Every word he says I know took a lot of learning and growing. I am on the way to “getting” that the ability to communicate, through any means, is not something to take for granted.

There is so much that Nathaniel can do now that he couldn’t do before that has taught me so much. He’s starting to walk up & down steps instead of crawling. Lately, he will alternate feet on a couple steps, instead of putting both feet on one step before going to the next one. He still puts his hands down most of the time, but he doesn’t have to. He can jump forward. Not that long ago, he couldn’t jump in place. He gallops, bear crawls, slinks like a snake, goes up and down a sliding board by himself, is getting comfortable on a platform swing after a long period of not wanting to get on any swing. All of these things are probably no big deal to some – but to me, AMAZING. Every time I see him do these things, I am thrilled. It just doesn’t get old.

And all this progress is not about assimilation. I don’t need for Nathaniel to be “like everyone else.” But I want him to be comfortable, happy, confident and with less anxiety. I don’t take his happiness for granted. I don’t take his comfort for granted. When I see him happy, when I see that he is feeling more comfortable in situations that were hard before, more confident with his own physical movement, I am all the happier. The smile on a child is a beautiful, awesome thing. And my son’s Autism has made me more aware of the importance of another person’s happiness.

That’s pretty awesome…or ausome.