Posts tagged ‘sensory’

Holding Pattern

My goal at this point is to kind of just get through the holidays. Before C was born, I was all about the holidays. Starting with a pumpkin carving party for Halloween-to a massive feast on Thanksgiving-to decorating everything that moved for Christmas, I lived for October 1 to January 1. But this year, I’m just not in the mood. I am not in a bad mood, but I have realized that I would rather just “be” than pretend as though things are normal when they are most definitely not.

Like so much with C, things slowly started to change after his birth, and our holidays changed just like everything else. C was terrified of Halloween. Literally terrified. Pumpkin faces and costumes freaked him out, even the happy ones. In later years, he enjoyed trick or treating (even though he didn’t like candy) just to bang on people’s doors and get something from them. But slowly over time, my Halloween decorations were put away, and eventually just given away.

Thanksgiving was even more of a non-event with C because he simply didn’t eat. I have talked about his sensory issues with food many a time here, and they really impacted family gatherings. It took years for him to be able to eat around other people, and he still struggles with it to this day. His feeding therapist always told us eating was the second most difficult thing for the human body to do next to sex. Eating involves so many sensations that are overpowering for sensory challenged kiddos. True that, we have found.

Christmas? It was a bit better, especially given C firmly believed in Santa until well into middle school, which I loved. Yet he was all about the material gifts, which I didn’t love so much. When a kid starts saying, “Just give me cash, it’s easier,” it sort of takes the meaning and fun out of it. He enjoyed the spirit of giving at first, but even that faded over time.

Still, preserving traditions was very important to me, and I kind of mourned the lack of them in our home. I grew up with very entrenched holiday traditions, and I envisioned my own family being that way as well. Like so many other things, that has not happened for us, despite early efforts to make it so. I eventually kind of gave up, and felt somewhat resentful for it.

This year? I am oddly grateful for a newfound awareness. With C away and everything feeling so strange, I have realized it is not about the pumpkins, the feast, or the tree. I am not opposed to those things, but they just don’t mean as much to me anymore. I was caught up – not in the stuff as much as in doing the stuff. Right now? I’m pretty content with my 24/7 Christmas carols and reveling in the recent snow. Watching the birds at the feeder, smelling the scented pine cones I picked up at the store, and peppermint hot chocolate are filling my soul more than enough this year.

December 2, 2018 at 6:00 pm 2 comments

I must…

be crazy. No, scratch that. I know I’m crazy.

     School registration came up quickly this past spring, and I knew in my heart I didn’t want to send C back to his current school. There’s so many reasons why I felt this way: not the least of which was one of his teachers telling him God spoke in her ear at the bookstore and told her the Harry Potter books were evil; or the fact that based on one test (which “I didn’t do well on purpose because I didn’t want more homework, Mommy”), C was placed in what seemed to be remedial math (despite his being able to do long division in his head); or the fact that several of his specials teachers gave him such useless, meaningless, negative comments – without any context – on his report card. It’s more than that; it’s a feeling that despite getting straight As last quarter, the gaps in C’s education are far greater than they should be. 

     So the great search began once again. C “shadowed” at two schools. We chose one of the two, enrolled him for next year, and settled down to wait. Except I didn’t feel settled. That little voice in my head just kept creeping back in telling me none of it felt right. It grew and grew until I hatched a new plan. All of C’s schools – public, charter, and private  – went sour after a time, and some far more quickly than others. We keep moving C to a different school, either because the current school doesn’t work or because we actually move, and they all turn out the same. Some sour more quickly than others, but they all end up in the same place – the WRONG place.

     Then I saw that quote about the square peg fitting into a round hole:  The problem with trying to fit a square peg into a round hole isn’t that it’s hard to hammer, but rather that you are actually destroying the peg.

     And boom. There it was. It’s not that the schools are wrong (although some of them, frankly, are). Perhaps it’s that C doesn’t belong in school. Perhaps putting him through the stress and anxiety of trudging through school every day, never wanting to go back on Monday mornings, and feeling like the week is one hundred years long is not what C needs. Perhaps there is no school that is right for C.

     So the idea was born. I resigned my job, cancelled his registration at his new school, and started planning. C and I will start our new homeschooling adventure on September 3, 2012. Our journey along the path to what we need continues with this newest chapter, and I hope you’ll join us.

August 16, 2012 at 8:51 am 12 comments

Mom interactive

     Not that I would ever be a “typical” mother, but I am most definitely not one given this child of mine. While the days of being the only mother at the playground actually up on the equipment with the kids are long gone, I still do some version of this now. Often on these lovely fall days, while the neighborhood moms are hanging out in someone’s front yard, I am facilitating C’s interactions. “He’s doing fine,” I hear on many occasions. “They’ll work things out.”

     And there it is: the grand difference between us – the idea that the kids will work it out. Actually, mine won’t. Yours will – they’ll bicker and fight and be best friends again five minutes later. C, however, will often alienate kids because his negotiating, problem-solving, and compromising skills are significantly less developed than the kids around him. An argument over a ball can have life-altering consequences for C because your child won’t want to be friends with him after it’s over. Or C will lose it and start crying, and the other children will stare and snicker at his socially “inappropriate” behavior. And they don’t forget. No matter how many times you tell me that all kids do that, you simply don’t understand that my kid does it times ten. And the all kids you are talking about are generally half C’s age.

     This is where I get angry. Because if C lived his life in a wheelchair, you would do everything you could to make sure he is fairly included in every activity. But because his disability – and yes, in this area I have now painfully come to conclude that for C it is a disability in many ways – is invisible, no matter how much you talk to your kids about accepting his differences, they still don’t want to be around him a lot of the time. Friends who couldn’t get enough of him months ago can now hardly be civil to him. And he doesn’t understand why.

     Then I feel guilty for being angry. Because you have in fact talked to your children about accepting C’s differences. You have talked to them about being kind to him no matter what. Your kids are nice kids. What I’m asking of your kids is often more than I can do myself; I get just as annoyed with C as your kids do. He doesn’t back down, he won’t drop an argument, and he won’t give you your space when you ask for it. I, like no one else, understand how frustrating it can be to be friends with C, despite his endless kindness, thoughtfulness, and genuine fondness for simply everyone he encounters. You have to work really, really hard to be friends with C, and most kids just aren’t capable of that level of effort.

     Then I get angry all over again, because C is a kid who will play with anyone and include everyone. The same can’t be said for the rest of the world, and definitely not for the rest of the neighborhood. So I soldier on, facilitating interactions and trying my best to help the other kids relate to my own while at the same time trying to teach C how to navigate the social waters of life.

     One Mom summed it up by saying that we are trying to teach our kids tolerance. And while I agree with that sentiment, I’m not sure that I agree that any of us are having any real success.

November 16, 2011 at 4:01 pm 8 comments

Wordless Wednesday


This kid is ready to DRIVE! Is MY seatbelt fastened tight enough???


It’s only a matter of time before C is smiling because of the view behind him, but for now, I like the smiling out of sheer joy of sitting in the sand.  It was only a few short years ago when C wouldn’t even get in the sandbox!

October 28, 2009 at 11:33 am 4 comments

Let him eat cake

     I have a picture on my bulletin board of a kid sitting at a high chair with spaghetti covering much of his head, face, and arms. This is my inspiration. C’s first feeding therapist told me if we ever got him to go as far as to smear food in his hair, we’d be done with her. I’ve sort of given up on the spaghetti in the hair fantasy, but I’d settle for C’s eating spaghetti with sauce (instead of shaped pasta dipped into ketchup – we couldn’t possibly put the ketchup on top of the pasta, of course).

     Still, I’ve long had visions of C wearing birthday cake like most one year olds do on their first birthdays. Yet even on his first birthday, C didn’t touch cake, and he definitely didn’t eat it. It was no different on his 8th birthday, where he actually requested cupcakes like the other kids would have. I found gluten free, casein free, egg free cupcakes with frosting, and surprisingly, they didn’t taste like cardboard.  He still wouldn’t eat them at his party, but he did blow out the candles. The next day, however, without the audience of 15 of his friends, he decided to try the cupcake…and proceeded to eat the whole thing.  

     I think 8 is going to be a very big year.

March 30, 2009 at 12:45 pm 11 comments

It’s over

     Our brief foray into the world of Boy Scouts is over. It was quick and somewhat painless (at least for C, not so much for me). It all started at our last IEP meeting, where a discussion about how to help C make some connections with other boys somehow evolved into my becoming a Cub Scout Den Leader. It happened almost before I knew it, so skilled are those folks who participated in our IEP. Frankly, it was a good idea, in theory. The reality, however, was different (and thank you, Husband, for somehow managing not to say “I told you so”).  

     As is sometimes my way, I jumped in with both feet and almost immediately wanted to run screaming into the woods. Never mind the woods are where Cub Scouts are supposed to be. I thought I had enough information to make a wise decision, but I was wrong, wrong, wrong. I signed up, thinking it would be good that I could control the den and our activities. C needs to work on gross motor skills? An “outing” (the Cub Scout word for “field trip”) to the climbing wall. C wants to learn about stars? Planetarium, here we come! What I failed to take into account, however, was the likely difficulty of my being leader and C’s parent at the same time. In the past, this hasn’t been a good combination. And as I read through the overwhelming “to do” list for leaders (graciously provided after I accepted the job), I quickly realized there was no way I could do it all and still help C have a positive experience as a Scout. So after a few days of agonizing about it, I told the pack leader I just couldn’t do it. “But I’ll be a leader’s assistant!” I graciously offered, thinking this would solve my problem of needing to be in attendance with C at meetings but not wanting to actually run the meetings. So the poor man found another leader, and I merrily went on my way preparing to be an assistant.

     Then the email came. The email that ended it all. It was a schedule for the boys’ first campout coming up next month. Included was a list about 12 pages long of the exact activities in which we would participate that would ensure the maximum number of badges would be earned in the course of the weekend. Wait a minute, did that say weekend?  Given we’ve never even managed a camp out for one night in our own backyard, it’s hard to imagine going an entire weekend in a tent with, well, C. One of the first activities was for the Scout to plan and prepare a family meal over the campfire. C doesn’t eat meals.  C eats finger foods. And certainly not finger foods cooked over a campfire. Can we eat Fruity Booty right out of the bag? Does that count?

     After that email, I continued to fight with myself about why Scouting would be good for C. He loves all that positive reinforcement; badges and pins would be a thrill for him. It’s organized, structured and busy. Yet for the first time ever, we may have found the activity that’s too organized, structured and busy for C. The thought of an entire weekend camping out (which I think we would all ultimately enjoy after some practice) with an entire Pack of distractions and frustrations for C, made me want to run screaming into the woods again.

     So with a heavy heart, I resigned again from Cub Scouts, and not only for myself, but for C. Given he hasn’t even mentioned it since the first and last Pack meeting we went to, I don’t think he cares. We’ll have to run our own camping trips to the county park near us. Just not on the same weekend the Cub Scouts are there.

September 29, 2008 at 5:59 am 5 comments


     As any parent with a special needs child will tell you, there are moments of extreme heartbreak. The moment when the specialist renders a diagnosis, or when you realize your child will struggle with something his whole life that other kids get in ten minutes, or when a school lets your child down. Yet often these moments come when you least expect them, and they are so swift and painful they take your breath away. Sometimes you don’t fully process them until later and you find yourself crying in the middle of the grocery store, reaching for your sunglasses and hoping you don’t see anyone you know.

     When I watched C wander around the playground this morning before school, aimlessly looking for a familiar face, something started to well up inside me. The time was only a brief five or ten minutes, but it felt like a lifetime. It’s not for lack of wanting to connect with someone; this child is about as social as they come. So I watched, while he walked around, anxiously looking for a friend to share his time. All the playground noise of the zillion kids running around faded from my ears as my chest swelled with a sob. There’s something so awful about watching your own child, whom you love so dearly and so completely, struggle with something so basic, so fundamental to his very existence.

     The moment became far bigger than it was, simply because it represents C’s challenges in the most profound way. He no longer approaches anyone and everyone with abandon, so he’s learned a lesson or two along the way. This is good and bad for the same reason: he’s more aware. Aware of some of the rules, yet aware he still doesn’t know exactly how the rules work. It’s a core issue of C’s version of autism.  

     The moment continued for me, while I later went about my day, sneaking up on me at inopportune times. Tears continued to drop here and there as I remembered his forlorn look as he milled about. Surely parents of “typical” children experience this at times, but I comforted myself by remembering that with the heartbreak comes moments (and there are more of these, truthfully) of extraordinary joy. Perhaps parents of special needs children experience the heartbreak and joy in more extreme ways, simply because there is nothing we can take for granted.

August 21, 2008 at 9:48 pm 11 comments

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