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.
The last couple of weeks have been a little rough for Chance at school. See, and right after I wrote about how well he was doing. Sigh. First, it was Halloween, then he was on Prednisone (that stufff SUCKS donkey balls for already hyper kids!), then it was... I don't know. SPD? Trying to get away with messing around? A cold kicking in? It's really hard to splice out all the elements leading to bad behavior, but I had to pick him up from school three times for just acting out so much the teacher can't teach. Of course, he doesn't WANT to leave school or want to be in trouble. He's got a good heart. His impulsive tendencies coupled with high emotions lead to... more impulsive behavior and high emotions! Yay.
So anyway, we've set up an OT re-screening to see if tweaking his sensory diet will help. His initial screening was over two years ago so I imagine we might need to change up his activities. I also want to see if there is anything else besides SPD popping up. The thing is he does great in his speech/OT sessions with another kid, but a classroom of 30 is completely different. I think he also needs some refreshers on how to express frustration/anger in better ways. I.e. without running around the room shrieking (what the hell is up with the fricking shrieking?!) OR rolling on the floor and refusing to get up because he knows that pushes everyone's buttons at school.
Aren't audiences great?!
Yes, I am cynical. Because brushing off all his behavior as SPD-based will not help him. Sometimes kids are just punks because they can be.
Whatever the reason for the recent behavior here's hoping it'll get better. And it's not all bad either. This morning Chance received an award for reading! (I mean, they will ALL get awards throughout the year, but that doesn't mean it isn't a big deal to the kids. Positive reinforcement, wooh!) He knows all the kindergarten required words and he's been reading first and second grade-level books. He's been reading for awhile (beause if you can't read you can't follow instructions on video games! Seriously, Mario Bros have been a big incentive for him) but he used to always want me and Keen to read books to him.
Last night, for the first time, he read an entire book to me, including the contents page.
I'm becoming superstitious. Every time I write something here that is in the least little bit prohetic (or just optimistic) I jinx myself. Such as, "I think we're getting better!" or "Things have been going well!" Then all progress stops dramatically. Just. Because. It's gotten so I'm afraid to post anything without throwing a black cat over my shoulder. Or throwing salt at a cat. Or... something. I'm not sure how all this superstition business got so violent.
But I'm going to risk the kitty because... Chance has been doing really well in school. I mean, comparitively. Compared to last year, and compared to the year before that. Compared to a kid who doesn't have SPD/sensory issues. He had some rough patches in the beginning, the first 2-3 weeks of school. He was having massive tantrums, one's where he was throwing himself down on the pavement kicking and screaming. Which he doesn't do at home (so, you know, mortifying). I was hoping the tantrums were all about the new transitions, and were not setting up a pattern for the year (because that would be like repeating 3 all over again). I know it has to be rough on him. A lot of activity, a lot of kids, a lot to process. Luckily, it was about the new transitions. Now that he's settled in there's been quite a lot of reasonable (for 5) behavior! I've been really proud of him. He still wiggles and touches everyone way too much. He is still easily distracted. He has a tendency to shout out without raising his hand. I think that's the one that drives the teacher batty. (Frankly, I'm amazed how ordered she keeps that class of 30 kids. It is fricking impressive.) Basically, most of his issues now (knock on wood, chuck a cat) seem to be impulse control ones stemming from sensory overload. Even the sensory overload seems to be getting better. (His focus... not so much.) Most of the teachers/aides who encounter him and don't know about the SPD just assume he's ADHD and treat him accordingly. And for now, I'm fine with that.
I'm interested to see how academic assessments turn out, though. At home, I see him reading and doing math beyond the kindergarten curriculum. I strongly suspect he's not showing some of that interest and skill at school. At home doing that stuff is fun, at school there are kids to play with. Why would he read a book or ask about math when there are kids around?
But all in all, two months in things are going pretty OK. Now without further ado I need to go find a rabbit to give an indian burn. Or maybe I should try this the other direction:
Things are going wonderfully well with not winning the lottery!
Today was Chance's first day of kindergarten!! Can you hear the elation? I'm pretty psyched, he's pretty psyched. I'm pretty sure there will be no tears (unless Keen loses it, the big softee). Me and the kiddo went through all our tears when he started preschool (MUCH more traumatic at that age). By the end of summer at home I think Chance and I both are ready for school. I'm excited for him to make new friends and start learning new things. Trust me, he's honed his video games skills to a fine point. And yes, I'll admit we spent a good chunk of summer playing video games. And swimming. That's what summer is for!
Today was a short day where the parents stayed in the classroom with the kids (in case any of the parents needed emotional support). The kids looked so cute in their little uniforms! (Even though I still strongly disapprove of uniforms. No need to give up one's principals in the face of cuteness.) Everything is spanking new so I figure this is the best they're going to look all year. (And sure enough Chance slopped chocolate across his white shirt as soon as we headed home. (See right for the still clean version. Technically, he's also supposed to have a tucked in shirt and belt but... yeah.)) There is also a Boo Hoo Breakfast tomorrow for the parents (cue more emotional support) while the kids start their first real day.
Boo Hoo Breakfast. Go ahead, you can snort.
I'm only a little anxious. Chance already stands out on energy level. And they lengthened the kindergarten day from four hours to six hours just this year. (I had a brief moment of panic when I heard about the longer days earlier in the summer, but I'm over it now. I think.) They also increased the class size to 30 kids. However, his focus has gotten better and, hopefully, we'll see how his self-regulation for the SPD issues go. He's still in group OT and speech which should help. I'm anticipating that he might need something for his hands to squeeze. His teacher seems great. Very mellow and unfazed, like she's seen it all. (Because who wants to walk into their kid's classroom to meet the high-strung teacher, right?) And the parents seem really cool. That's important because I've signed up for the parent participation program. (Because it's all about me.)
You can't see me but I'm typing really fast. I think I've drank my caffeine limit for the day already. Talking about high energy, oy.
- the weirdgirl
P.S. I double checked and it says it's true but I'm not convinced "firstly" is a proper word.
I'm sure I'm not the only one but I'm ready for school to be over and summer to begin. I need a change in routine. More importantly, I think Chance needs a change, too.
A lot of kids with sensory issues struggle with transitions. They really like their routines unchanged, and there are a lot of strategies around how to deal with this. However with Chance, I've noticed that if I don't shake things up every once in a while, if he's not challenged then he slips back into bad behavior habits. Rather like, "Wow, now that I'm completely comfortable in all my environments, even a little bored maybe, I think it's time to defy authority."
For example, just yesterday I made Chance dinner and put a slice of bread on the plate. Then when I went to make my own plate I noticed the bread was moldy. Whoops. So I called out...
Me: "Hey Chance, give me your bread. I think it's bad."
Me, walking into the room: "I think the bread's bad, hon; I need to check. Give it to me, please."
And Chance, instead of handing it to me, TOOK A BIG BITE!
Then my head spun around a few times and I vomited freak out words, plus yelling. Then he got sent to his room and there was some more yelling. And there were some tears and a general impression that there would be dire, dire consequences, plus drama, to any continued disobedience.
A few of you might be thinking, "Wow, overreact much?" but seriously? He didn't even look at the bread, he just assumed he knew better (because five-year-olds know everything) and he completely disregarded me. This has been happening a lot recently but that was the first time where it could have made him physically ill. (I know, it was only mold, but what if it wasn't?!) You know, I can deal with the typical kid challenges to authority. In theory, I even like a good, independent spirit and self-thinker. But when those challenges turn into potentially unsafe behavior... I kind of lose it. I mean, what's next? I yell, "Stop, look out?" and he runs in front of a truck anyway?
Keen always says, "Don't even go there; you're just worrying yourself. Why do that?"
Because I'm a mom, that's why.
So anywho, all this boils down to I think we need a big change in routine. We've got Chance's graduation on Friday and then we're ending the school year early and going on vacation. When we get back I'm changing up his OT ( we need to work on some new specific skills) and starting some new challenging activities. I honestly think he's just so comfortable in his current routines he isn't feeling the pressure of consequences when he's acts out. You know what I mean? He knows all his teacher's buttons, and grandparents in general are pushovers. Yeah, I might (maybe, possibly) have my own buttons/control issues but I still recognize and manage the differences between his SPD and his behavioral issues better than anyone else. I need Chance with me some more so I can keep him on his toes. Unfortunately, a sad fact of kid life is that obedience is necessary.
I know this is breaking the mommy blogging rules but I need to take a moment to bitch about my child. Yes, I know! We're only supposed to talk about how much we love our kids, and the cute and great things they do, or, barring that, how misunderstood they are because they are actually secretly wonderful even when they are misbehaving.
But come on, my son is a person, just like anyone else and that means he has strengths and weaknesses. Potentially annoying ones.
I LOVE my son. To pieces. And I will get all mama bear up in someone's ass if they try to mess with him. Chance is smart and super creative and I love that. The creativity is one of my favorite things about him. I love that he can whip out a story at a moments notice, that he is always thinking, that he looks at things in different ways, and says the unexpected thing. But sometimes? Those smarts and creativity?
Kill me. KILL ME!
Chance doesn't understand what "fast" is. Or at least he doesn't understand the difference between fast and slow. He doesn't understand the word "focus". And god forbid he actually does one thing at a time.
This morning we're trying to get ready to leave and we were ON TIME! and he insisted he wanted to do another homework sheet before school. So I, like a big dummy, said, "OK, if you go fast as we get ready we'll have time. So go fast." But the fast never happens.
When Chance finishes his homework sheet (which was punctuated by numerous unrelated questions), and I say "OK, write your name," he launches into a story. "What if Abraham Lincoln and the Mario Bros..."
When he actually writes his name he decides he must do each letter in a different color. Which is fine. As long as you do it quickly! Nope, he tries to start a discussion about the coolness of different colors. (Which I nip in the bud, to speed things up. I do a lot of bud nipping.)
If I say "come here, it's time to put on your shoes", Chance lays flat on the ground, points out that he's lying down, sits up, grabs a toy, and then spins around on his butt three times. By that time, I've snagged an ankle to haul him over.
This happens for EV-ERY-THING!
I try to give him useful definitions for what I'm talking about. Such as, "going fast" means only doing the things that need to be done, no extras. And then I point out what the extras are: telling a story, playing with toys, jumping up and down when I say "come here", trying to do two things at once. "Listening" means stop, looking at a person's face, not talking/interrupting, etc. But ARGH! This is not meant to be a "secretly wonderful even when he's
misbehaving" post because seriously? Seriously? He's driving me
nuts!! Some of it is the SPD, some of it is just his nature, and some of the time he really is just misbehaving because he thinks it's funny. (So NOT funny.)
I can usually repress the frustration. I'm very good at repression. But this morning I lost it and slammed my hands on the floor and now my wrist hurts.
If any of you were wondering what living with a sensory-seeking SPD kid is like, it's kind of like this...
Followed by launching himself into the couch, over and over. (I've heard that there are little boys who don't do things like this, but I've never personally met any. Me and my brothers used to do this type of stuff all the time. Geez, runs in the family much?)
Actually, that balancing right there? That's something of a breakthrough. For a long time Chance's balance wasn't very good. It's part of the SPD (dyspraxia/postural instability). Fortunately, he didn't (doesn't) have as much of the fear as a lot of kids with sensory-related balance issues do, so he'd still try things, most of the time. Sometimes not.
Nowadays, there's a lot more trying.
He still trips and falls down a bunch, but I think some of the time he's doing it on purpose. He REALLY likes to roll around on the floor.
You can imagine my angst when he does it in a public bathroom... at the doctor's office... during flu season.
So on the one hand, super proud of my burgeoning gymnast!
It's about diagnosing children with bipolar disorder and medicating them. Not that I'm against medication, because I'm not. I have a close friend who is bipolar and I knew her before she presented symptoms, after she was diagnosed, and I've seen her both on and off meds. She absolutely needs them. There are lots of people, even children, who need some type of medication or other to help them function.
But feeding multiple pills to four-year-olds when diagnosing seems like "an experiment"... ugh... it just hits me in the gut. Especially when you see professionals admitting that children can often be misdiagnosed.
The part I really have a problem with is the portion (I'll summarize for those who don't want to watch) where a mom is asking her 4-year-old child's psychiatrist if there any other options outside of medication, such as therapy, to help her child and the psychiatrist says "No".
There are other options. You can get a second opinion. You can see a panel of specialists, not just one person from one field of study. There are different types of therapies.
OT (occupational therapy) has done wonderful things for Chance. It has also been wonderful for another classmate of Chance's who goes to the same center. Now granted, neither of these little boys have bipolar disorder; they both have sensory processing issues. But OT can be helpful for a variety of issues, including mood disorders. It is an option and one that I don't think is very well-known.
I also have no doubt that if we had "just waited" like so many people suggested, if I had not pushed for Chance's assessments to find out exactly what was going on, if I had not tried the OT (out of pocket I might add), at some point someone in a school somewhere would have told me Chance was ADHD and needed to be put on medication.
So far the OTs and speech therapists that Chance sees are seeing no signs of ADHD. It's all sensory processing disorder (SPD).
My brother was put on Ritalin when he was kid and it never seemed to do much for him. Then as soon as he became a teenager they kept offering him different forms of antidepressants. Looking back at everything, I think he had sensory issues and was misdiagnosed, first as ADHD, and then it was just assumed he was depressed. (Not that depression doesn't run in my family, because it does, but not ALL of us are depressed. I've been offered antidepressants multiple times. I'm NOT depressed. My complaints? Tired and having back pain. Solution, here's an antidepressant. ??)
What's my point? I don't know. I have such mixed feelings about the entire medication and instant diagnoses process. It's so complicated. And again, I've known people who've done great on meds and needed them. But I also personally feel there is an age that is "too young" to give drugs to little kids. I'm not even sure we know how those drugs affect teenagers' development.
I DO think that starting with something that doesn't use drugs, like OT, is a better first step than going instantly to medication.
I want to talk about SPD here more this year than I have. I meant to but I always ended up discarding those posts. However, I'm going to change that. It seems like SPD is so unknown and yet you see it, once you know the signs, all the time. And I feel like if I help talk about it maybe it can help other parents know their options so their kids don't get ignored or misdiagnosed.
Honestly, I'd love it if a few of us parents dealing with SPD got us a website going. Talking parent to parent, you know?
So I was going to try to do a Mother's Day post yesterday (Happy Mother's Day!) which I didn't get around to, partly because I read this instead and it left me more disturbed than I thought should be appropriately transferred to the Day of All Moms. (Please stay tuned for a general spewing of personal and possibly incendiary opinions.)
Basically, this article details a local PUBLIC school who has been discouraging disabled students from attending because the school has high test scores and didn't want them compromised.
I mean, seriously, what the fuck?!
First off, it's a public school. It's your job to educate the public. That means all of the public. Second, why the fuck are you beating on the disabled kids?! Because, in general, that's considered pretty low. And if you're OK with that you're certainly not going to have a problem beating on any other kids that don't fit your standard either, at least eventually. (Start with the extreme cases and then start whittling down, right? What's this civil rights thing you keep talking about?)
Third, (and I know this is the one people will get mad about because it should be the least disturbing point made) I'm not convinced that solely "teaching to the test" is a long term benefit for our kids. There! I said it! This is an opinion formed completely from personal experiences and anecdotal sources but I still believe it's true. Sources such as hearing my husband bitch year after year of interviewing kids out of school who've got great grades but rudimentary-to-zero social skills or common sense. Basically, kids he won't hire! I've seen situations where schools/teachers seem more concerned with teaching the academics than with the children learning those academics. I've heard (though I haven't read any yet) there are studies out now showing the to the test method isn't exactly providing students with other often deemed necessary life skills. And frankly, seeing the stress put on kids to pass all those tests - especially considering that they may not get hired after all their work - I think that stress is rather unfair to the children.
Yes, I think education is important (and if you knew me in person you would know how passionate I am about continuous learning and education) but I'm more an advocate for a happy, well-rounded child with great self esteem than I am for pushing extreme academics.
And I know that opinion is not going to give me an in with the legions of parents who are on preschool waiting lists because they think that's the right road for their child to get to Stanford.
I am seriously concerned about a mindset, be it from a teacher, a school, or other parents, that is so concerned with test scores they are willing to push other children out. I mean, yeah, I kind of expect that from some private schools, but if this is trickling over into the culture of the public system?
So I've been thinking a lot about this one lately... the way our school system is set up. Chance is getting closer to kindergarten - he's a year away - and I know I need to look at our options. I've been looking, here and there, talking with other parents at OT, scanning the ads for schools in our local parenting magazine for particular keywords. I haven't done an in depth search yet but I know I need to start.
The plan originally was for Chance to go our local elementary, which is well-rated and, the part I love, would be full of kids from the neighborhood. I like the idea of being neighborhood-centric. It's one of the reasons we picked this neighborhood in the first place. Literally growing up with the children near you, rather than having sets of friends at distant schools, and distant hobbies, and distant sports - which is the way world seems to have moved.
However, I am the first person to acknowledge that a public school might not be the best environment for Chance with his sensory issues. He has come a LONG way since last summer (I mean, huge) but he still has a way to go - some of the sensory issues will continue to get better as he gets older, but other aspects will still be hard (especially, I suspect, his sensory-seeking behaviors). His preschool class right now has 30 kids and that's probably way too many past ideal. I just haven't wanted to pull him away from his friends (I'm so much less concerned with the "academics" of preschool in favor of socialization).
Honestly, seeing how much of a difference the OT and speech therapy has
made with Chance, what I'd LOVE, would be to pick up his entire therapy
office and drop it into a school environment. His therapy office is
comprised of both Speech and Occupational Therapists. And there are
schools like that, who have therapists on site... but they are usually for autistic or more
physically disabled kids. There aren't any (or none I've found so far) for the children who have an
issue or two that is getting in the way of development and learning.
And it's a shame because many of the methods used in play
(occupational) therapy really increase focus and, utimately, help learning. Not
just for kids with special needs, but everyone. If you make a roomful
of children do ten jumps in a row before sitting down to learn a hard
math problem, they generally will have more focus for learning.
Public schools in California have gotten increasingly larger as school funding has been cut. I was talking with the spouse of a teacher recently (whose son is also in OT) and I asked what the perspective was on kids with ADHD, SPD, or other similar issues and he said that with the large class sizes and the pressure to score highly on tests the teachers just "don't want to deal with" the difficult children. They don't have the time.
One out of 20 kids has sensory issues; that's 5% of the general population. Another 5%+ have ADHD/ADD. There are also children with depression, bi-polar disorder, Aspergers, and behavioral issues. There are kids with medical conditions, like cystic fibrosis and more. There are kids who are more active or less active than those around them. There are children who "just don't fit in". These are regular kids... but they all have issues, sometimes really small issues, that get in the way of learning, interacting, and self-esteem. These are kids who might not learn best by the "sitting still and shuting up" standard. Looked at by itself not one of these seems to be a signficant percentage in the general population, but taken all together you start talking about quite a lot of children.
So... if every classroom has 2-3 kids (and probably more) that are "difficult", that the teachers just "don't want to deal with", where are those children supposed to go?
Because I can tell you right now I haven't found a school for those kids yet; the kids who are mainstream but towards the edge. The kids who have a special need, but aren't special needs.
Chance is impulsive and physical and often inattentive and smart, and I don't want him to lose out on reaching his potential because he's one of the "difficult" children. I don't want him to struggle unnecessarily or lose self-esteem. I don't want to see any other child lose out on their potential either, because I have to wonder... are we, is our education system, failing these children?
So that's basically what I would do... if I was rich I would found a school. A school with smaller class sizes and rooms outfitted with OT gym equipment. A school with OTs and speech therapists and regular therapists on site with the teachers. A school where an emotional outburst is not a major breach of "how things are done". A school that could accomodate a special diet, the need for a quiet room, or the need for a child to run a couple of laps before sitting down to learn. A school where a kid who might feel a little different, can just relax, instead of feeling like they're getting in trouble all the time.
If you know of a school like that, let me know. - the weirdgirl
Earlier this week Chance was sick so I kept him home Wednesday from beloved preschool. He wasn’t really sick sick, just one of those runny nosed, slightly hot, cranky/lethargic type of things. (And I knew how he felt because I’d felt pretty crappy the night before but felt fine by morning.) However, since figuring out his sensory issues I’ve learned that sometimes those little things can be the final straw - one too many things to process. He has a hard enough time at school (or anyplace with a lot going on) without feeling yucky on top of it.
(I caught him totally milking the “sick” thing today, though. After getting in trouble, no less. And my straw wears size eight shoes.)
His school is actually going well. He had some rough spots the first few days, but now he seems to be settling in. I’ve been copiously rewarding bribing him with goodies of the candy variety. (And before you all condemn me for pushing the Great Evil Sugar on my child, well… let’s just say… being the child of hippies who didn’t allow us kids to have sugar (or grapes or food coloring) because of both “hyperactivity” issues and purist food notions and/or supporting strikes, AND then watching all of us same kids grow up addicted to sugar to varying degrees (because what do you do when you’re a teenager with hippie parents? You either eat a lot of junk food or you join the ROTC)… let’s just say I have a different perspective than most. Moderation is key.
Besides, he didn’t have any sugar today and he was bouncing off the walls! So there you go. (Some days are still rougher than others.))
Anyway, one of the other things that has happened with his SPD issues is I’ve started bonding with the other parents at OT. You know, where we all sit in the waiting room pretending to read Parents Magazine but really dying to talk to one another? Luckily a bunch of us are chatty. We’ve started passing around names and contact info and we’re talking about putting a playgroup together. Yay! It just happens that everyone who is going in that morning time slot has a kid 3-4 years of age. It also seems that we’ve all – go figure – been going through the same experiences with other playgroups/parents/preschools; i.e. stares, comments about our parenting, freak outs by other adults, blah blah blah. You get to where you start avoiding a lot. It’s not only isolating for us parents, but I think we all worry (endlessly) about isolating our kids. We want our children to have fun, to not feel restricted all the time, to not only socialize but to make true friends. And there is nothing better than finding other children who are “rough players” with cool parents who know the score.
After talking with some of the other parents it also sounds like I may have made the most progress on Internet research into possible playgroups in the area. I had, of course, been looking at our local Parents support group, but I also found a Meetup listing for an SPD/Asperger’s playgroup (I had to dig deep to find that one). Those two were all I found, and I need to follow up with emails on both but I feel energized by the idea of organizing and passing the info along. Maybe start a new Meetup group or web page. There are a lot of “resources” on the web to learn about SPD, but not much in the way of just finding people to talk to. I feel like if I can help the next group of parents dealing with SPD to find playgroups in the area… that would be a cool thing.
Makes weathering the rough days just a little easier.
- the weirdgirl