I've hit a wall with Chance about his occuptaional therapy. We've been doing rhythmic movement therapy (Primitive Reflex Integration) since last October. (Wow, I didn't realize it had been so long.) But just in the last couple of months, my son is giving me total attitude about it. There is a lot of whining and fighting it and not doing it correctly, trying to push my buttons while doing it, etc. So I decided to let him have a break for a couple of weeks. It is summer after all and I think he's just fighting anything that is beyond relaxation. Poor overworked child. *utter sarcasm*
I wasn't convinced yet that this new therapy was doing much. It was giving him some more coordination, but it's also supposed to give a kid more impulse control and I wasn't seeing that yet. But by the end of the two week break... he was losing control of his body! I mean, a lot more unconscious flailing of his arms; throwing his body around without realizing it, stuff like that. I was like, Wow! OK, I guess this IS helping. It's subtle, but for long-term control I think it's good for him.
So we started up again. And he went right back to giving me crap about it. I keep trying to make it fun but it's hard to keep it fun when you're getting mad. I'm frustrated. On top of that every time I try to give this one goldfish medicine another goldfish dies. Non sequitur, I know, except I kind of feel like the goldfish are a giant fucking metaphor!
I think I'm also running out of creative ideas TO make it fun. I mean, I've been basically doing one form of therapy or other with him, almost every day, since he was 3 1/2. I know therapy works; he's just being a total twirp.
This week I started incorporating music with our rhythmic movement. Hopefully music will tame the savage beast and blah blah blah. I wonder if I should bribe him? I haven't tried that yet. (I try to save the bribery for special events, you understand but maybe we're at that point.)
But... if anyone has any other ideas I'd love to hear them.
The days go slipping by. It's funny, I've been doing this blog for so long - and so many bloggers I know have picked up and moved on - but I don't ever really think about shutting this blog down until I hit these spots where a week or more has gone by and I haven't blogged. In fact, I didn't even notice that I hadn't blogged. That's when I think maybe I should hang it up.
But I probably won't get around to it, just like sometimes I don't get around to blogging. :)
Anyway, I wanted to talk about our Disneyland trip, especially as it relates to Chance's SPD and ADHD. Because our first trip to Disneyland was such a disaster, all trips after and onward have become a kind of barometer for how he's doing. On that first trip Chance had a hard time dealing with all the noise (because the place is never quiet), the enclosed rides, the general sensory overload, and then on top of that lots of walking and waiting in line. It was just HARD and we didn't really have a handle on the SPD yet. The second time we went, he had gotten a significant amount of OT by that point and we had his noise cancelling headphones so it was a marked improvement. Not perfect but better.
This year, his thrid trip, went really well! His default answer on trying new rides or shows is, "No thanks," and we've never been sure if that's because of memories from his first trip or just general SPD anxiety. He's better when it's a ride or show that's out in the open where he can see everything going on, but much of Disneyland is hidden inside rooms or behind mazes of lines. However, this year, even though he was saying "no thanks" initially, we did get him to try several new rides and shows with a little coaxing. By the very end of the trip he was willingly trying new rides. And then, AND THEN, we met up with some friends and their kids for dinner and he tried some new food too! Not just one new thing either, but several new things. This is a big deal. Not that he's a terribly picky eater but he went through his picky eater phase, you know what I mean, and now he's pulling out of it! Mainly because his friends were there. Ah, the power of peer pressure! I love you. For now. Not when he's a teenager and goes all stupid.
Anywho, those are the big highlights. That doesn't mean there still weren't a few meltdowns. I mean, Jesus, have you been there? ALL the kids have meltdowns at some point. And some of the parents, too. Especially during that magic period right before dinner but before the parade and after walking all day and "Where all you going kids? We're not done yet"! It must suck for the employees there who pull that shift. I also had one woman come up and ask where I got Chance's headphones. I could tell she was at that desperate-to-talk-to-someone beginning point of dealing with special needs that we've all been through. I feel you, hon. And I wrote down a few websites for her to check out at home.
So that was it! Vast improvement over all and I hope the vacations just keep getting better. Me and Keen even got to sneak out a couple of times to ride the grownup rides! Wow, that came out sounding like an innuendo. We snuck out separately. Um. Don't worry, Chance was always supervised by at least one of us.
I've been reading this book, I Am in Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice, by Elizabeth Bonker and Virginia Breen. I was trepidatious approaching this book because, frankly, it's about special needs and I don't read many books about special needs. I do plenty of research but I don't read many personal accounts. See I've got this really good tough front going on, but inside I can get kind of gooey. And special needs is one of my trigger points. It can make me frustrated and angry and very determined, or occassionally, really unexpectedly emotional. Much of this is not because I have a son with special needs, but because I have a special needs brother. Sometimes there are events that trigger early memory flashbacks and their emotions. It's like getting hijacked. For example, once a friend of mine in college had a seizure on campus and I was calm through the event, knew what to do, put my jacket around him, waited for the paramedics, etc. Then when I walked away later I completely broke down. Sobbing in front of strangers, snot running down my face broke down, and unable to get out the words, "My brother used to have seizures."
So I guess what I'm saying is I don't read that many special needs books, I don't watch that many movies, because they scare me. I'm scared of getting emotionally hijacked. I already live it, you know?
That big long aside being said, when I heard about this book I wanted to check it out despite my fearful gooey innards. The book is co-written by Elizabeth and her mother, Virginia. Elizabeth is (currently) 13-years-old and cannot speak, but she is highly intelligent and learned to communicate through a letterboard and eventually, typing. Then she began composing poetry. This, of course, caught my interest! The book is a collection of Elizabeth's poetry and comments, along with essays by her mother about their journey with autism.
I've been really enjoying it. Virginia talks about the emotional aspects of raising two children with autism but she is also straigthforward about therapies and treatments. She's obviously a very proactive, solutions-based person. In my experience these type of people are more optimistic, and less defeatist in all aspects of life. She owns her own venture fund and I particularly enjoyed when she related how certain business practices can also relate to managing a special needs diagnosis. I worked in high-tech for a long time, including four start-ups, and I could understand the mind-set she describes. In business, as with special needs kids, you have to be relentless and very dedicated to step-by-step processes but you also have to be flexible and creative as hell, and occasionally you have to make some leaps of faith. Speaking of faith, she also talks about its place in her and Elizabeth's life, and how it is Elizabeth's own perspective that has affected her most profoundly.
Going back to Elizabeth, I was really interested to read her poetry. I started writing poetry young and I am always excited when I hear of someone writing at a young age. That kind of love of words seems to be innate so most who have it do start writing early, but I can't say we live in a society that always nutures it. Her poetry reads a lot like the poetry I was writing at those ages. Granted, Elizabeth definitely addresses her own struggles with autism, especially people's reactions and her frustrations, and her emotion really carries through. But she also writes poems about world peace and faith and the beauty of nature in the way that most thoughtful, mature girls her age write about these topics. It is both touching and comforting and, for me, I think that is where Elizabeth most strongly proves her point that yes, she IS an aware, regular-in-all-the-ways-that-count 13-year-old girl. Even though she is trapped is autismland, Elizabeth has found a way to soar above it.
Although, our special need situations are extremely different I still really liked the book and I really liked who it was about. Virginia and Elizabeth are people I'd like to meet. I felt like the book was very hopeful, and relatable, and informative, and I think it could be equally helpful for people who are interested in autism but have never experienced it.
And you know what? It didn't make me break down. - wg
Chance has had a rough time at school this week. This year in general has gone a lot better than last year, but this week he started throwing tantrums at school again and his handsy behavior has ramped way up. I've also noticed a general cockiness has suddenly surfaced. He is quite imperious about issuing demands. (What?) It's hard to tell how much he is pushing boundaries, how much he can't control because of sensory/impulse issues, or how much might be medication or OT treatment related (he just started some Primitive Reflex Integration treatment). That's one of the problems with kids who are non-neuro-typical... because the brain has to grow and adapt, any type of stimulus can set off behavior problems - even good stimulus, like a new OT treatment that stimulates nueral growth or learning something new, even if they love it. I remember when I first started taking drum lessons... music was a completely new skill for me and for a while I lost my easy recall for words. I could feel my brain changing and when it got used to these new skills I was learning, my word recall popped back. I suspect something like that is going on with Chance.
Except for the cockiness. I think that's just being a twirpy 6 1/2-year-old. Oh, he's also being very cavalier about this concept called "rules". Ahem.
Anyway, Chance is hugely into Pokemon right now. He'll actually do chores, quickly and efficiently, without whining, to earn money to buy Pokemon cards! (Two steps forward, one step back, right?) Since I think part of his behavior is something he can't control and the other part is completely willful, I suggested that maybe we should take away a Pokemon card for every time he stomps his feet or invades the personal space of another kid at school. The teacher could keep count and let me know at the end of the day how many infractions there were.
He looked alarmed. Oh yeah, did I also mention my son glossing over incidents at school?
So we have a field trip tomorrow and I'm chaperoning. I will get to witness his behavior first hand! And we're taking the fricking public bus system. Insight on a bus. Joy.
Thank you to Crocs for sponsoring this blog post. Please click here to learn more about Crocs’ new Back to School line. They've got 13 new styles for boys and girls (K-8) that are approved and ready to be worn at school. I think I salivated a little when I found out about them, but more on that later. I was selected for this sponsorship by the Clever Girls Collective. All opinions expressed here are my own.
I used to have knee-jerk anxiety when it came to back-to-school shopping (and I still do a little). Since Chance has sensory processing disorder (SPD), and many kids with sensory issues are particular about clothes, I was worried about having a school uniform. I worried that everything would be so uncomfortable it would affect how he functioned in school. Well, with kindergarten now behind us and except for a couple of specific things, it turned out alright. But last year, amid learning numbers and routines and the introduction of young minds to the school environment, I also learned a couple of new things about school uniforms...
1. White shirts look SO CUTE the first day of school. The other 179 days, not so much. However, the layering of stains can be quite intriguing.
2. It is really, really difficult to patch the knees of pants that have the leg-width equivalent of toothpicks. I am already sewing challenged, I don't need this grief.
3. White socks will become dingy socks. Not just dingy, though. There'll also be this dark grey circular stain right on the top of the sock, in between the top of the shoe and the hem of the pants. It's like the boys decided it would be fun to drag the tops of their feet through mud every day. I don't even know how you bend to achieve that but the socks don't lie.
So this year I changed my whole back-to-school shopping strategy. Chance has the option of wearing either white or dark green shirts as part of his uniform, along with navy blue pants. This year I was going for dark green polos, pants with reinforced knees, and navy socks. Of course, everyone else who had kids older than kindergarten had the same idea. You know how the local department stores will stock school clothes in the colors of the neighborhood schools? Oh my god, it was a fricking mob run on those green shirts! Like they were the Christmas It toy! But I got 'em. I am nothing if not a persistent shopper. The sad thing is I actually started my shopping a little early this year and the clothes were already going fast! The pants (also running low) were solved by snagging one pair at the store, making sure they fit, then ordering the rest online. Sweet.
My one hiccup was the one I didn't expect. I could not for the life of me find navy blue socks for boys! It was ridiculous! All the usual department stores only carried white or black. I mean, in what world would a little boy need to wear black socks that often? Because we all know it's SO STYLING to wear black socks with sandals or jeans! Maybe they had some grey socks, or the occasional red railroad track socks. What? I ordered some blue socks from a uniform website and they ended up being too big.
Here's the thing, we have been lucky that Chance's sensitivities to clothing have been minor. I still look for softer clothing, tagless shirts, etc, because who doesn't want to be comfortable? He'd love to wear fleece or sweatpants all year long, but he's OK with softer jeans or twill pants (like his uniform), especially if he's worn them in a bit. BUT! If his socks don't fit right, like they slip around because they're a little too big or they bunch up anyplace, he won't wear them. It's a sensory thing that drives him nuts and I really can't blame him for that.
I finally found some navy socks by going to one of those children's stores in the mall that carry socks in every color imaginable. I was a little worried that I'd have to buy girls' socks but I figure if they didn't have fluted edges and I didn't tell him they were girls' that it'd be OK. (Yeah, I'm that mom.) But luckily they had standard gender-neutral blue socks.
That brings us to shoes. Chance likes shoes. (He's so my kid.) He'll pick out the colors and patterns that he likes and he always wants more than one pair so he has options to change them with his outfits. Then he tells us proudly how "stylish" he looks. We had actually done our shoe shopping pretty early in the summer because his shoes from last year were completely trashed and barely fit. But Chance loves Crocs and that's pretty much all he wears all summer. He especially likes to wear two different color Crocs, like one red and one blue. That's part of his styling look, you know. Anyway, school started and he had problems transitioning to his school shoes. He kept clumping around and tripping and I thought he was being silly and kept telling him to "stop walking like that" before it occurred to me that it was the shoes. By this time, I had already heard and gotten excited about the new Crocs line. If your kid likes something that much and it's functional it's hard not to want it for them. Previous to this Keen and I had discussed trying to find him a pair of Crocs that looked more like regular shoes but they hadn't come out with anything that was quite right yet. Then, given his difficulty with the other shoes, it all turned out to be a happy coincidence when the school line popped up. So I made some calls and found the nearest Crocs store that had the back to school line.
That kiosk also happened to be right outside Build-A-Bear. (Sucker mom!)
He loved them immediately (can't you tell?) and insisted on wearing them out of the store. (Then proceeding to the dirtiest spot he could find before he would let me take a picture.) What's cool about them is that they are so light he's not clumping around or tripping anymore. In fact, as soon as he put them on he ran circles around the mall. And he says they feel like Crocs on the inside but they still work well with socks. What's an extra bonus for us is that with his SPD he's already trying to deal with too much stimuli and sometimes dyspraxia (clumsiness) kicks in. This was exacerbated by the heavier shoes and I was just momentarily too dingy to clue in. With lighter shoes it's just takes away one more potential distraction or difficulty he has to deal with at school and I'm really happy about that. I thought the styles were pretty darn cute, too. Here's his shoe...
Thanks to Crocs for letting me blather on about school shopping. I hope all of your school shopping went smoothly and everyone found socks. :)
Crocs sent over this cute video with an easter egg when you spot this little guy. --->
They are also holding a giveaway for a free family trip to San Diego, no purchase necessary! So if you haven't gotten your vacay on this might be a fun option. Enjoy! - wg
I got summer locked up today! I am feeling very relieved and rather energized. Trips kept coming up and disappearing and dates shifted and well, we got all vacations sorted, a summer camp signed up, and paperwork in for summer OT camp. It's been difficult because we want to keep Chance busy (but not too much because it is summer) but we don't want to throw too much at him that's new either. He had a neurology appointment early in May and he fits the criteria for ADHD combined type, on top of his sensory issues (and frankly, he's been really hyper lately so I'm not surprised). We will probably try some trial runs with medication over the summer, but we want to be careful with them. I've seen them work great with some people, but sometimes people have different reactions. I remember my brother talking about meds that made him apathetic, which is exactly the opposite of what those drugs are supposed to do. I also don't want anything that will change Chance's fundamental personality... his energy, while excessive, is what makes him special and so engaging with people. The point of meds are to help him slow down enough so that he can organize himself better. And I don't mean like organizing his homework, I mean as in organizing his thoughts, body, emotions and reactions to the world around him. So we'll see how it goes. Regardless of meds or no meds, I do believe that there is just no substitute for good behavorial therapy.
Or he could just end up addicted to caffeine and sugar highs like me.
Chance woke up with a very high fever this morning, 103.7, and I gave him motrin and threw him in the bath and basically did all the things to bring his fever down while biting my nails and feeling very frazzled. His fever has come down (thank goodness) and we are going to the doctor. Chance was sick the week before we went to Disneyland and then a bit at Disneyland. Chance also always seems to get sick when Keen is out of town. The kids at school have been passing around illness in rotating waves lately. I feel like a very big portion of my life is spent around sick kids (which is exactly why I never had an iota of interest in being a doctor or nurse). And that in turn affects the other portions because then I get sick and can't participate in my own life.
The portion of my life that I call entirely my own is such a small tiny tiny percentage of what I'm doing on any given day. Usually squeezed in at the end, when I'm tired.
By the way, all you accomplished, incredibly successful people at 30... I hate you.
I've been picking up Chance from school and bringing him home for lunch everyday for the last couple of weeks. It seemed like all his meltdowns or misbehavior incidences at school were happening at lunch or right after. The cafeteria is just too fucking loud. We'd discussed setting up some sort of break for him after lunch at school, but things came to a head and I decided having lunch at home would be his break. And it does seem to be helping; he goes back for the afternoon much calmer.
But now I have a really odd schedule.
It would be fine if I was happy with just the mommy track, but there are other things I'm trying to do. Our world is not set up to support moms who are trying to do anything other than be moms. Being a "good" mom (patronizing head pat, please) means you get screwed.
We had our first SST meeting for Chance at school last week. SST stands for Student Success Team. I guess it used to stand for Student Study Team or something like that but someone decided that wasn't positive enough so they changed it. They also call tutoring/study club "intervention" or "support". The marketing person in me finds the spin amusing.
Anyway, I have been trying to get all our resources together... trying out a few new OT techniques, looking for new materials. I passed around this book at school and I'm not sure I'm gonna get it back! (Which is a shame because our OT/Speech therapy is all excited to see it, too. Guess I'm ordering more.) I'm currently researching noise-reduction or isolation headphones so if there are any SPD/autism parents out there with suggestions please ping me! I will love you long time. We're trying chewing gum in the classroom for focus and to stop someone's little motor mouth from running. I had put together a "busy bag" full of fidget items and worksheets and that has been helping a bit when he just can't sit still. Starting this week I'm also going to be picking Chance up and bringing him home for lunch. This is a big one because it cuts my day in half but it just seems like most of his melt-down incidents happen in the afternoons or at lunch time. We've been discussing giving him a scheduled break in the middle of the day to get away from all the stimulation but honestly, I'm not sure the school has the aide/resources to enforce a break every single day and it might just be moving him from one stimulating environment to another. So I think getting away from the 180-student lunch time noisy cafeteria/recess might be the break he needs. We're going to try it anyway and see how it goes. At least the school year is half-way over.
Combating Chance's constant energy and craving for social interaction can be exhausting. He will come home from school, chill for an hour, and then, after being with his friends all day, still ask for a playdate. Or he wants me and my aching joints to play on the floor with him. He also gets bored. He wants new and interesting diversions. Because his little mind is going like a rabbit on speed.
Do you remember the days when you got bored?! I think the last time for me was 1988. (I have a hazy memory of watching dust motes in the warm, warm sun. That's like an extended fantasy for me now. Like mom porn!) I am never bored anymore. Except when I'm at the park and I feel my eyes glaze over. I hate parks nowadays.
Anyway, we do what I think most families with SPD kids who are high-energy sensory seekers do, we schedule (or try to schedule) a lot of activites. But at the same time, for my sanity's sake, I try not to have more than two outside activities going on at a time. We already do joint speech/OT on a on-going basis once a week. We've considered adding in another pure OT session because this time of year is always a little rough. Besides straight therapy sessions we have found a few things over the past year that seem to really help with the SPD issues. I thought I'd just post a little about these in case any other SPD families were looking for ideas. For the record, Chance has high-energy and sensory-seeking behavior (craves touch) and he is oversensitive to sound, so we tailored activities for those needs. He's also five, almost six-years-old.
Soccer: Lots of running around, which is great. Expecting a whole lot of focus at an early age, not so much. But Chance overall enjoyed it.
Swimming: This one was a huge plus! Full on sensory immersion, lots of muscle use. Chance wanted to take a break from it over the summer (because he was, say it with me, "bored"! Crazy child) but he soon realized that he really likes swimming. Especially with some competitive racing ideas dangled as a carrot.
Gymnastics: This one was a mixed bag. It's great muscle and joint work but the gym was really noisy. Chance had a hard time maintaining focus and following instructions. He liked the activities but since we've stopped he hasn't asked to go back and I think it's because of the noise. I think it's also important to find a gym that is used to dealing with boys. We tried one gym previously where I hated one of the teachers because he wanted all the little boys to act like the girls and that's JUST NOT GONNA HAPPEN!
Karate: We tried a trial class but ran into the same problem as gymnastics, the gym was larger and just too loud. I think martial arts in a smaller setting would be fine. We've also considered trying a less aggressive martial art, like judo. And I hear that wushu is great, but I'm still hesitant about teaching any five-year-old how to punch and kick. Or wrestle. They're all so prone to that anyway.
Drums: We are just starting lessons and we'll see how they go. So far Chance is pretty psyched that he gets to hit things. And counterintuitively, kids that are very sensitive to sound are usually OK with making their own noise. A very loud noise of their own making helps them focus.
Science & Art: I try to do activities at home with Chance because of that active mind thing he's got going. Craft projects, science projects, etc. The problem is this takes an awful lot of organization and energy on my part. I'm usually stocked on art supplies but I'm always a little short on energy. Or brain power. And the problem with science projects is there is always waiting involved. (What? The volcano has to dry?!) So I was going to try a Science Camp this spring and see how that goes.
What about the rest of you? What kind of activities do you like for your kids, SPD or otherwise?
My son got in a fight at school today and was suspended for the day. When I walked into the office I heard, several times, that on the playground "he was running around hitting kids". They made it sound like he had gone wild. Chance was hysterical. When I finally got him to calm down I asked him why he was fighting. Because that was the question that popped in my mind because even though, granted, my son is too handsy, too touchy, and he plays too rough for a lot of kids - there still are other boys who play, or enjoy playing, just as rough - I've never known him to just start hitting kids randomly for no reason.
It turns out three to four other boys were calling him names, ganging up on him.
Neither of these behaviors is acceptable.
I am so frustrated. And tired. And I'm starting to get angry.