Autism Watch: 2007

Posts Tagged ‘spectrum

First, despite being down a child due to the one still living out-of-state for college, it was an excellent Christmas.

I had worries — what happens if it gets too loud, too crazy, he doesn’t get the cellphone he’s been asking for, the list goes on. We had realities — he needed time to decompress, one part of his favorite gift had a minor break the night of Christmas (when he insisted that this kit go with us to see family, despite us telling him not to take it), he got over the cellphone even though his cousin the same age got one (despite us telling him ten-year-olds don’t need cellphones), he had meltdowns during both the decoration of the gingerbread house and the gingerbread cookies (maybe the ginger smell gets to him?) and he cried more than once that his oldest sister wasn’t with us. But, he made it through and nothing was that serious.

The good things, the things that went above and beyond ‘normal’ Christmas fun, negated the problems. He spent hours playing tag in the dark with his cousins on Christmas night, he played basketball with them, without a problem, and when his sister spent the night (without anyone really inviting him), he came home without a problem or even a mention. But the biggest deal? The thing that made this Christmas absolutely most amazing? SNOW.

We’d been hearing for days that it would snow late Christmas night. A lot of people said that it wouldn’t really happen, it’d be a sprinkling to not get excited about, and how ridiculous it was to want it to snow. Still, we wanted it to snow and hoped the weatherman would be right. Before we moved from the west coast, we had to drive an hour or so to get to the snow, and we’d get to the beautiful mountains only to see that every other family within three hours was there right along with us. In your square foot of clean white untrodden snow, you could play but if you had to use a restroom, get your car out of the rut in the snowbank or want to avoid ambulances because too many people decided fast-food lunch trays were credible, safe sledding devices, you were out of luck. We went to bed close to midnight, and I woke every hour to see if it was snowing. Around 4:30, we’d gotten a couple of inches, so I woke BB up as promised. He wouldn’t go past the front porch — I think the sheer cold caught him off-guard. I took a few pictures and went back to bed. I was woken up around 8am with a loud HECK YEAH from dh. Snow, and not just a little. Inches and inches, and it was still falling. We woke up BB and our older son (dd was still at her cousin’s) and took pictures at the dogs’ first foray in the snow. Hilarious. They loved it, and didn’t want to come back in. We bundled BB up as much as he’d let us and he ran out to jump into the snow. Dad went to get snow gear out of storage at the in-laws and it was four hours before BB would come inside; even then, it was only to get some lunch. Another couple of hours of snow play followed, where we built three full-size snow forts and a slide, had numerous snowball wars, and built a life-sized snowman, complete with carrot nose. He then pooped-out, made a bed in front of the fireplace, pulled out his favorite gift (the magic kit) and put on Despicable Me. The snow’s still around, three days later, but he has no interest in going back out. He just wanted to be sure we put a scoop of snow in the freezer to save as evidence of our awesome day. Works for me, a lot of good memories from that one day.

We’re noticing that the “I must be in charge” trait is coming out really heavily. It’s hard to deal with some days. I can say “Please wait five minutes until I get <xxx> done, and then I’ll make your snack,” and he barrels on about the snack, as though I’ve not even spoken. “Mom, want to hear a joke?” “Sure! Let me finish dressing and I’ll be right out.” But he has other ideas, he’s telling me through the door. “Can I read this story to you?” “Yes, as soon as I’m off the phone.” As fast as I can finish my sentence, he’s reading the story to me, like he never heard me. I can have conversation after conversation with him about how friendships/discussions are two-way. One talks, then the other talks. One chooses the activity, then the next chooses the activity. And I daily teach him that he can’t tell me when I can get up and get a drink, when I can start dinner, or what I’m putting on the TV. Yet we go on and on with him insisting he’s in charge, having such a hard time dealing with the fact that the world doesn’t operate on his plans, and that other people have wants and needs and their own minds. Such a test of my patience, though he’s not being malicious. I can’t be mad when he often just wants to sit with me, cuddle with me, or read with me. It’s just something we need to work on, but if only there was a therapy or something available that a) worked, and b) was available to people with jobs and other kids to provide for as well.

Come the new year, aka the closest we’ll get to normalcy, we’re going to start working with the RDI program. I’ve got a couple of excellent other books to read as well, including “Lost at School,” and I hope to put some of what I learn to use, adding to my homegrown degree in Autism. (That should probably come before my web/blog design certification studies and photography and Photoshop classes. Oh, and the jewelry I need to get to the consignment store.)

Today, we ventured out of our snow-covered city and visited a local zoo. What a blast! BB was upset at first, said he didn’t want to be there (he’d forgotten his gum at home and that constituted enough reason for him to hate the outing) and that he’d rather be at the movies. (However, the movies wouldn’t work as the only one they wanted to see showed too late this evening to make the trek home during this holiday-traffic week that time of night.) He got over his issues soon enough though, and we had a great time. As always, the second he got there, he was hungry. And thirsty. And hungry again an hour later. I almost spend more on food when we got anywhere than I do on tickets! Tomorrow is going to be a ‘stay at home’ day, where he gets to decompress before family visits on New Year’s Eve, and any partying we may do that evening. I think we’ll make cookies, and I mean we loosely — we’ll start, and I’ll end up finishing them beyond the first tray.

Happy New Year’s to all!

Just to start out, I’m going to say no. Categorically, no.

I’ve been a part of the community now for almost six years. I didn’t want to be a part of the community, but I am. On most days, I’m glad to be a part of it — it got me through some very difficult days, I’ve made some wonderful friends (online and offline) and I continue to check in for resources and to get/give support as necessary. On other days though, I’m disappointed.

If you’ve read my blog at all, you know I speak my mind. Autism tends to do that to you. You don’t have time to mess around, so you get around to the meat of the issue or you just walk away and leave it because you have more important things to do. For a while now, I’ve just walked away because I have, like everyone else, a busy life, but there are times when I shake my head and sigh and think “What a shame.”

A few years ago, I was being included in an article about autism, parenting, and alternative autism treatments. I was excited to be part of it, because I really believe autism is not displayed to the world for what it really is.  (More on that later.) I also wholeheartedly believe in biomedical treatment for autism, be it whole hog GFCF diet and a bunch of supplements or just the addition of a healthy vitamin and removing dye from a child’s diet. I readied for my interview, and on the day it was to take place, received a call notifying me that we weren’t going to be able to be included. What? I fit the requirements of what you were asking for — I’m a parent of a child on the autism spectrum who is receiving biomedical treatment living in a certain locale, and my child is a male within the required age-range. How did I fit before but not now?

I was surprised at the answer: “You aren’t biomedical enough.”

Really?

First, what is “enough?” Secondly, why didn’t requirements list that up front, and probably most importantly, (thirdly?) why isn’t your article showing people that you don’t have to be GFCF, anti-yeast, seven daily supplements, chelation and HBOT to actually have biomedical success? Why is only the extreme being included?

They didn’t give me a good answer, but I gave up. This was when life was even busier now, as my child was younger and his issues were worse, and I didn’t have time to fight every battle. I wish now though that I had.

Much of the autism community longs for acceptance by the rest of the world. We push for it for our children, and we want mainstream medicine to give credence to our feelings and facts. We just don’t give it to each other. We aren’t doing ourselves any favors if those ‘facts’ only include only those that are the worst, only those that are the most extreme, or only those who make for the best media interest.  We don’t like it when autism research is ripped apart and nitpicked, yet are we guilty of it ourselves if we don’t allow for all those on the spectrum to be represented?

At the time, my son was taking a multi-vitamin designed for children with autism, was casein-free, was on an anti-yeast protocol and zinc for a mouthing/licking tic. And he was improving. Shouldn’t that have been enough? Then again, I heard then (and still do) from other parents that he should also be gluten-free and on a bunch of other supplements. We can sure be the harshest support system ever.

Another case in point: many autism segments on television shows, movies or news segments include the same families and usually severe children. My beef’s not with seeing the same people — they have the right to participate in whatever they choose — but what about the rest of the world? Are they not volunteering or are we just using the same spokespeople over and over because they make a bigger impact? How does one get ‘in the loop’ to be included so the general public can truly see the variance in autism? I won’t go so far as to use the word “clique,” which I’ve heard it referred to numerous times, because I’m not sure what the cause is, but the world is full of amazing autism families, and the same few are the only ones that will ever become known to the world. I also feel strongly that mildly affected children should be included as well as moderate and severe. Maybe it’s because I’m tired of hearing “really? Your son has autism? I couldn’t tell” because they don’t know enough about mild autism and therefore, they don’t think “hmmm, maybe he has autism” and instead think “What a brat.” Or maybe it’s because there are so many parents out there not getting their own children the help they need because the kids they saw in the piece about autism on last week’s news show all were non-verbal and very obvious developmental issues, tics or other obvious things. Probably some of each, and a few other reasons, too.

The next charity autism mini-movie that I see, I’d love to see it include those with Asperger’s who are so desperate to have friends that they would do anything to fit in but don’t know how, some verbal autistic children who are grades ahead in their class at school but can’t handle the blinking lights in the classroom, the children who aren’t potty-trained but are vocal enough to tell you their feelings on being teased for their diaper, along with the non-verbal children who stim and spin and hand-flap. That’s the real autism community, from one end of the curve to the other. It’s the very real spectrum, and maybe it won’t grab hearts as much as just the extreme kids, but why not show it like it really is?

There are awe-inspiring people in the autism community, and I’ve been lucky to meet many of them. When I need some help or want to share something I’ve learned, I’m equally lucky to know that they’re there. But I think we fall seriously short of equal representation. We want to show our worst, our noisiest and our most renown — it makes for better media. But does that make it better in the long run?

For the quiet, unknown moms, dads and children  in the autism community, the ones who aren’t online much and are working just to get through the day, you deserve the covers of magazines, the spotlight in a news piece, or the focus of a written article. I can’t give it to you — just a small blogger who probably speaks her mind too much, but I wish I could.

Swine flu. It kicks your butt, and that of your entire family. No more than any other flu, and certainly not worth the vaccine, but nonetheless, it not only kicks your butt but it kicks it to the curb four houses down, into the gutter, through the sewer and out into the ocean 67 miles away. Four weeks later and I am still sporting a mild cough.

So there you have reason number one that I’ve not been blogging. My eyes were spinning at the end of the day, as I still worked during my bout (except for one day where even blinking and breathing was painful), and I was caring for Barnacle Boy, who scared us for a couple of days when the fever continued to hover around 103. Both the girls ended up with it, then the husband. Other son ended up with some cough and congestion last week, but that’s as far as it’s gotten. He’s oh so lucky.

I love Christmas. Why do I say that, you wonder? Because I love it more than Halloween..yet Halloween turns out to be this huge busy deal and before you know it, October’s gone and I’m wondering how to spend Veteran’s day with the kids who are out of school, yet I’m not because I have the Monday before off. Halloween this year consisted of two major parties, a few smaller events, and then the Trick or Treat Fest of the year at our house. We have this ginormous maze constructed in the front yard, from the curb I’d previously been kicked to through the yard, the driveway and out the side of the yard to the other street, complete with roaming monsters of the Freddie Krueger and zombie-type, scary movie music, and screaming … adults. A lot of the kids collected candy at the end of the driveway and backed away hoping Freddie didn’t see them.

Yet, I am <quietly> glad Halloween is over. I’m still tired. We went off-roading the weekend before Halloween and had, let’s just say, a little accident. Wear your seatbelts no matter how slow you are going, even if you are driving over a rut in a driveway. (No, that’s not what happened, I am just making a point. Heed my point, really.) Rollbars make nasty, ugly, sore and painful indentations on your eyeballs, eyelids, cheekbones, foreheads and noses. Trust me on this. Once you get the blood out of your clothes (and the off-road vehicle’s seats), you will not want it there again. I’m still sporting a crescent under the eye and eyeshadow is one of those things I have to really, really consider before I apply.

This past weekend was another huge Halloween party, this time adults only. (Unless you count the 20-somethings…my two oldest kids and their friends…who crashed it around 11:30pm just to see why Mom and Dad looked forward to the party all year.) Good thing my costume came with sunglasses to cover most of the bruise. I was Trinity, and husband was Neo. We were simply awesome.

So, how is Barnacle Boy doing after all this? Well, a few days before Halloween, he had to have an emergency baby root canal. (This was the, hmmm, 4th, I think?) He was not happy. Dh met me at the dentist and said he did great in the procedure. I drove him home, with him being the quietest (and creepiest) I’ve ever seen him while awake. He went to school the next day and recuperated impressively fast. Then the week got more and more chaotic during pumpkin hunting, then carving, cookie decorating and guests. Come Monday night, he was DONE. We got through the evening of clean-up and declared yesterday and today guest-free days. The cell phones were turned down and tv choices were BB’s. I even made a mad rush to Target to get Stratego, the game he had to have after playing it the last night of his two-year program he completed last week. (WAY TO GO, DUDE.) He came home from school, opened it, and declared it THE WRONG STRATEGO. (There really is one Stratego though. I know this because I researched it.) Pieces went flying, mad words were said (by him…not me…I stood there in amazement thinking “Don’t ruin The Wrong Stratego, I can return it!”) and an hour later, he was calmly eating an Oreo as we prepared to leave for his parent-teacher conference, where we proudly learned he’s academically more than a grade ahead but in need of more help for social skills, classroom participation and appropriate conversation. Always something, right?

That’s pretty much a uber-fast version of the last month and I know I’ve left things out, but I guess I need something else to blog about on a slow day in the future, yes? I know it will happen, and the fact I’ve admitted that is step 1 in my Blogger Improvement program. Admitting you have a problem is key. I admit it. My name is Dee and I am not the best blogger lately.

But that will change. With autism, there’s always something to whine about, complain about, or just sigh about. And with an awesome beautiful kid, there’s always things to brag about, be proud of, and happily share. I just need to find the time.

I’m going to warn you — I’m going to be very candid here. I don’t need the flames if I offend, I’ve got enough already going on, so I really hope readers can understand that this is what it’s like in this part of the community and just take it for what it is, my feelings on a sensitive topic that I deal with daily.

Before I go any further, let me just say: speech does not equal communication.

My autistic child is verbal. Very verbal. His vocabulary amazes people, even his parents, daily. That’s the good news.

My autistic child is verbal. Very verbal. His vocabulary includes a lot of words uttered, yelled, and screamed solely to upset others. He speaks so quickly, he has no filter to stop the inappropriate commentary from coming out unbidden, towards anyone, even when you least expect it. When he’s upset, which is frequent, the words become meaner than the usual ‘stop,’ or ‘shut up.’ They might wish me dead. They might wish himself dead. And that’s just the beginning.

On a good day, or in a good moment, he uses his words to communicate more properly. He tells me he has homework to do, that he wants to eat cookies, or that he doesn’t feel well. Well, let me back up a minute. He attempts to tell me he doesn’t feel well. He interprets anxiety in ways we can’t understand, so when he tells me he has a stomachache, it doesn’t necessarily mean his stomach aches. He can verbalize that something’s wrong, but can’t always pinpoint it.

When he’s upset, he sometimes gets so garbled, we have to remind him to use his words. He can go non-verbal for a few minutes or a while. Sometimes he gets so hysterical, we have to remind him to use his words then as well.

Let’s take a typical day out of our recently, newly typical kind of week. He wakes up, we play our “I Love You” game, and he tells me he’s hungry. I make him the food he wants while he cuddles under his blue blankie and watches some recorded TV. He eats, spilling a good amount on the table, and when he’s done, goes back to the couch. I’m the anal/uber-organized mom who has everything ready the night before, so mornings can go easily if he’s in a good mood. Problem is, he doesn’t want to go to school. Today. Tomorrow. Ever. When I tell him it’s time to get dressed, he can whine for a minute like any neurotypical kid bothered at the interruption to Pokemon episode #317, or he can flip out and start yelling at me about how he doesn’t want to go to school, how his stomach feels pinched or how awfully mean I am for making him go. As if it’s not already upsetting enough to have to make him go when he’s happy, now I have to make him go when he’s calling me names and says he wants to go live somewhere else.

He has no idea of the power of his words. And even if he did, I’m not sure he’d care. We work on this daily. None of his tirades are acceptable. Every inappropriate comment is addressed. But, just like any aspect of autism-related behavior, it doesn’t go away overnight. Some of it’s such a problem, it never goes away.

So here’s where it gets candid. Despite so much autism awareness, people still hold verbal children much more accountable for their actions than a non-verbal child. People still tend to act as though the words of an autistic child are willful and intentional. They’ll excuse him when he freaks out because the vibration in a ceiling light bothers his ears, but they won’t excuse him when he uses mean words. When he gags up dessert because he can’t tolerate the consistency of nuts in a brownie, they pay him on the back and offer him a chocolate chip cookie. “Poor thing.” When he says it’s a “stupid brownie and the cook should learn how to cook without nuts,” the tolerance goes away. What people don’t get is that it’s the same thing. For one behavior, he gets “poor thing.” For the other? “Brat.”

So what brings this to the forefront of my mind right now? Our respite nurse just quit. We were called by the agency and given an excuse reason that doesn’t really make sense, and she didn’t even tell us or take the time to say goodbye to our son. (Hard to say goodbye when you cancel on your last visit, though we didn’t know at the time it was the last time.) The last time she was here, BB gave her a hard time and told her to shut up and be quiet. Definitely unacceptable, and we told her she needed to reprimand him, it was okay with us, and we also talked to him about it, in front of her. We thought it was over with, and that she understood. Instead, we get a cancellation for last week, and a permanent cancellation today. The agency is working on find us a new nurse, but I have serious concerns and know I have to have a long talk with the new nurse when one is found. (And I think I broke a new record for the number of “times,” ha that the word “time” was used in one paragraph!)

But, there’s a big picture here. If I had a dollar for every time someone told me how awesome it was that my son can speak, I’d be a millionaire. Yes, it is awesome, but it doesn’t erase all the other things. It doesn’t negate a self-injurious tantrum or a book/food/toy slinging-fest. It doesn’t fix the medical issues (potty issues, rashes, headaches), it doesn’t remove the sensory issues, and it doesn’t resolve the tics, repetitive movements and obsessions that get in the way of regular daily life. And it only impedes social interaction.

If you don’t know he’s autistic and you heard him get upset, you’d think he was just an obnoxious brat with parents who haven’t taught him how to behave. Now I wonder if the nurse thought this, and I know we had an aide a couple of years ago who thought it. (And maybe a teacher in there, but that was at our ‘old’ school.) If someone has the wrong idea about autism, they don’t seem to understand (believe?) that autism is a spectrum. A child can be verbal and still be on that spectrum. Being verbal is just a skill or tool that a child has, just like some kids with autism are savants and some can easily tolerate noise and some are able to control their anger without having a tantrum. If people started to view speech in that perspective, I really think things would vastly change.

But in the meantime, there’s still a bias. I’ve had a few people be quite mean to me that I’ve had the audacity to ‘complain’ that my child has issues. “At least he talks.” Yep, he breathes, too, so I guess I should be okay with everything else?

I understand that having a child who cannot speak is heartbreaking. I can’t say I know how the parent of a non-verbal child feels, because I don’t. But I don’t think that a parent of a non-verbal child can understand how I feel either. I wouldn’t dare to make a comment about their child, so why is it fair game to say it to a parent of a verbal child? Why is it alright to diminish everything else?

So this is a bit of a rant. I’m tired of the bias, and it’s finally coming out here on my blog. Because my child has speech, he is held to a higher standard. He’s expected to behave, to use only nice words, and to not get angry. He’s expected to suddenly have skills he doesn’t have, all because he can speak. Forget the fact that he can’t interpret body language or facial expressions, that he can’t understand the whole personal space issue or that he takes everything literally, he can speak! Why am I complaining, he can talk!

Life isn’t so easy on the other side of the spectrum. Everyone should say that, and mean it.

To you professionals out there that decide you want to work with autistic or special needs children, please remember they come in all shapes and sizes. You may work with severely affected, or mildly affected. Don’t just study up on the severe, the ones that are the stereotype of autism, but the full range. More importantly, get a thick skin. If you go into the field of special ed or medicine, or anything related, toughen up. Be part of the solution, not part of the problem. Yeah, that’s so cliched, but it’s real — if you can’t tolerate a child telling you to shut up, turn in your employee ID and head home. Sign onto the computer and look for a job a field without children. Or, remember that you’re working with a child with a disability and sometimes they’ll say things that you don’t like. Remember that they’re not your children, but rather someone you’re paid to do a job for, and that job is teaching and supervising. Teach, supervise, and go home and impose your personal feelings on your own children. When you’re on the job, do the job. You don’t have to like being told to shut up, but deal with it. Don’t dump on a parent at the last minute, ruining their only night out with their spouse all week long, and don’t add to their load by refusing to come any further because their child hurt your very delicate fee-fees. Suck it up. Or, try a new career. I have a job. I don’t like everything that I hear all day long, but I shake it off. And I even get called names. Frequently. (I’m in management and I deal with the public all day. Enough said, right?) I don’t like it, but I recognize it for what it is; I breathe in an extra breath, think about how I’m going to appreciate that paycheck when it comes, how glad I am to have a job (especially in this economy) and how I can leave it behind at the end of the day…and how that nasty person is someone else’s problem then, as long as I’ve done all I’m being paid to do to try to fix things then and there. Isn’t that the epitomy of a job? Doing what you’re paid to do, and doing it well? If you have moral issues with a job, then quit, but don’t take out your inability to handle something on a disabled child.

Rant over. Maybe.

I really think it should be required of any/all people working with children to be fully trained in all aspects of autism spectrum disorder. Don’t just train people in all the nuances of working with a verbal and a non-verbal autistic child, but teach them compassion towards both. Teach them to not treat one better/worse than the other. Teach them that just because a child doesn’t physically look handicapped doesn’t mean that they aren’t. Teach them to keep their pre-conceived judgments to themselves when they’re on the job, and remember that they’re dealing with someone else’s child, a child loved more than anything, a child worthy and deserving of respect, even if they’re not necessarily able to give it at that time. They’re also dealing with a family already overtaxed, and a family, and child, who need consistency. (Symptom of autism: extreme need for sameness.) Refusing to work with a verbal child is not just a change in your schedule and a relief to your overly-sensitive feelings. It throws a wrench into the lives of several others, and can’t be easily remedied. And if it’s not something you think you can find a new way to deal with? My advice is to see above, and look for a new job. Working with special needs children is definitely not for everybody, but if you put yourself out there, do it right.

As for me, I’m on the hunt for a new nurse. This next one is going to be the unfortunate recipient of a long talk about autism, and some questions on his/her tolerance level. I’m not going through this again. In California, our budget is so far in the tank, if we don’t use our respite hours, we’re told we could lose them. But, if our nurse refuses to show, and then they can’t find someone to replace her quickly enough (or not at all) how fair is that?  But I won’t digress. I’ve already written a very long diatribe on a few things and all the while, I’ve been listening to my son complain about having to do what he sees as an inordinate number of math problems. (Who knew “regrouping” was actually “borrowing?”)  I’ve had to re-type a million words, and I’ve had to stop two million times. His constantly incessant complaining is killing my concentration, and while I do love to hear his voice when he’s not mad, he can also go on and on and on and … anyway, on and on about a topic of interest, which in between math problems is “Total Drama Island.” In that time, he could have easily finished all that math homework. So the obsessive talking also gets in the way of getting things done. (Both his and mine, but for the sake of my point, we’ll just focus on his.) And now we’re obsessing with the social issues he’s facing during his days. Maybe we’ll finish math homework sometime tonight? It is mentally exhausting. Another side-effect I forgot to mention.

In the end, sure, I’ll take verbal over non, but please don’t use his ability to speak against him, or me, in any way. I can be very verbal, too. 😉

No clever title for this one, just a one word question from a worried mom.

These last few weeks, BB’s been ‘off.’ No one thing seems to be the cause. No changes in diet, no new meds, supplements, treatments. No new activities. Something’s just off.

Today, I’ll wonder every time the phone rings. Will it be the school? If it yes, will he be sick, or will he be having a meltdown? Will I have to pick him up?

I am thankful for a few things despite what appears to be one of those downs on the rollercoaster of autism. I am thankful for a good school nurse who works with our son, and with us. She comes up with good ideas to help him stay the whole day of school, and to make that day easier for him. I’m thankful ds can tell us what’s going on in his day, though speech doesn’t equal communication so I really wonder what we’re missing as he interprets things differently and is so literal, he may miss the big picture. I am thankful for a good school admin to help us make some changes for the upcoming year. It’s clear now he needs more social skills help, and we can’t risk starting a new school year without it. I am also thankful we live so close to the school and that my job/employer/supervisor allows me the flexibility I need to take their phonecalls and run over there as needed. And, I am thankful for Clairol, a haircolor I can do at home on my own schedule at a price that won’t make me compare it to how many doctor appointment co-pays or expensive child’s slip-ons I could buy with that money.  (Gotta be thankful for the little things, and be willing to laugh at where your mind can go sometimes, too.)

Every day, getting BB out the door to school is a battle. It’s not that he’s entirely uncooperative. It’s not that he’s refusing to walk away from the TV or computer like he used to. It’s that he’s so stressed about school it appears to be causing anxiety that’s manifesting in tummy aches and other physical issues. It’s hard to explain, but you autism parents will get it: he will get so upset about something, to him, he feels like a tummy ache but it may be tension. Or, it may outright be a tummy ache because he’s so upset about something that it really is making him sick.

When I left him at school yesterday morning, I again left him at the picnic table. Alone. I hate it. I’m so tired of leaving my sweet, funny little guy alone in a sea of children. They walk past him and he tries to play but they run off. Or he calls to one of them and the child(ren) ignore him. He’ll get a couple “hi” or “hello”-s when hanging up his backpack, but if my son responds (obviously, an issue we need to deal with) they still aren’t the ones wanting to play with him. I’m glad for those kids but I want him to have someone that says “Yay, xx is here! Let’s play!” Don’t we all want that when we go to work or anywhere on a regular basis? I tried a different tack and told him that those kids that didn’t want to play with him were missing out. “You’re a fun kid!” “Mom, only to adults am I fun.” What do you say to that?? He’s right, adults love him, but adults aren’t in second grade.

As I sat with him at the table, he told me he was tired of getting picked on. My hair stood on end. Picked on? Was it finally happening? I’d worried about this for a long time, someone teasing him for something he can’t control. Kids tease, and I expect this, and he’ll have to learn, but to tease him for a physical thing — a tic, a stim — just shouldn’t happen in second grade, yet it is. And by a surprising child, one who earlier in the year seemed to be an ally who understood him. So much for that. Apparently she sees him make a face, mimics it, and they laugh. He went on to tell me how he’s tired of other kids not including him, and this one girl talking about him. (“But, she made a mistake she doesn’t know about. She tells xx and he tells me what she says!”) It’s time for a change. I can no longer leave him unhappy, wondering, hoping that his day gets better and that he doesn’t stress himself into a tummy ache.

On Monday, the phone rang from school. He’d hit his head on the table but we’d told him to make the whole day at school without a nurse visit, and he of course took it so literally, he thought he’d be in trouble. Poor little guy, of course you go if you’ve got a boo-boo. Tuesday, the phone rang. Twice to the office for a tummy ache. Once he talked about it, he went back to class. I already have a mail from the school about excessive absences, but what do you do? How do I fix this? If he’s sick, he needs to come home. If something there is making him sick, they need to resolve it. So now we work together to find out why, and hope the rest of the year goes quickly.

And on other fronts — his appetite has increased so he’s eating bigger, fuller meals. He’s easily upset by things, and you just never know where a conversation will go. Will he blow up? Yell at me? Not want to talk to me for half an hour (or more) because I asked him to stop picking at the dry skin from his lip licking? At therapy last night, he had to be pried off me, and then wouldn’t come out from under the table. He refused to cooperate and had what was probably his worst night there in 15 months. Yet, when we got home, after the bath that I practically had to hogtie him to take (he goes into this non-listening mode where he completely ignores us and it’s really convincing), he pulled out “Diary of a Wimpy Kid: Rodrick Rules” and read out loud for a while. And read good! What an ability to sound out words he doesn’t know, which aren’t many, and to hear him laugh at a book….ahhh, not much better than hearing your child spontaneously laugh.

So things aren’t all bad, but what’s causing the regression? The stress from school? Just going through a phase? We see the neuro next week to have the MRI and bloodwork discussed. I want to talk about the anxiety then, too, see if he has any ideas. We’ll work with the school, and continue to talk to ds. It’s so difficult when things seem to be in one of ‘those’ phases.

If you haven’t seen it already, try to find a transcript or clip from Larry King Live on Friday night, with Jenny McCarthy, Jim Carrey, and Dr. Jerry Kartzinel. Oh, and Dr. Bernardine  Healy, the voice of reason who understands that we parents need to be heard, that biomedical treatments shouldn’t be ignored, and that vaccines may be one of several toxins in our world that are contributing to this huge increase in the number of children with autism spectrum disorder. Leave your opinions or biases behind as you watch, and listen to the numbers. It makes sense.

Gotta run. He just woke up and I need to go give him a cuddle snuggle…something about his eye hurting….

So much to blog about, so little time.

The last week has been a rollercoaster — up, down, up, down, with a curve thrown in here and there. We’re five weeks casein and dairy-free, with no visible difference. We’re not giving up, but it sure isn’t encouraging. Maybe my son is in the percentage of non-responders, or maybe it takes longer than five weeks? He’s never been a big dairy person, so I’m betting that he’s a non-responder. I still stand behind the GFCF diet — I know too many people whom it has helped — but I do believe that no matter what is said, it does not visibly help everyone. Internally? Who knows. Ds is still having potty accidents, still isn’t ‘regular,’ and we honestly see zero change, but it wouldn’t stop me from recommending to others that they try it, as they may just find their child does improve.

On to the next thing. We made the difficult decision recently to try our son on Risperdal. If you read my blog regularly, you’ve seen my son’s tantrums and meltdowns are worse. The mood swings are horrific, along with the self-injurious behavior, and I’m tired of being hit, bit, kicked, and having ds’s sibs having to tolerate it as well. And hearing him yell to all of us how he hates us, hates himself, wants to hurt himself, wants to die, isn’t liked by anyone, etc…I really pray this medication helps ds get some control over himself. I know he can’t want to be this way. On one hand, it’s heartbreaking to have to make this decision, but when you get to the point where you need to try it, for your child, I think you’ll know it. You need to make that decision for yourself, not for anyone else. I’ve run into my share of ‘you don’t need to medicate your child’ people. That’s fine, they don’t have to medicate their child, they’re right. But I get to make that choice for my own son, and I’d prefer this medication over what he’s doing to himself otherwise, and if this helps him be happy, who has the audacity to say it’s not worth it? Educate yourself on the side-effects and be ready for what may happen as best possible, but in the end, make the decision based on your own family alone.

Until we see some change with this medication, we won’t be dragging ds to any birthday parties. I also won’t be taking him shopping or to other loud, crowded places. It really is that bad. So far, we see more compliance and less anger, so we are continuing to pray this medication holds the key to future improvement, along with continued behavioral and social skills help. Picking your child up from school, and listening to him sob quietly the whole way home…no child should have to feel that way. No parent should have to worry if their child is going to make it through a school day without feeling the entire class hates him, that they are all teasing him, or that everyone’s laughing at him, tattling on him, or trying to kick him away from their lunch table. True or imagined, is it really any better? Something needs to change.

Where will I take my son next week? Disneyland. Yep, Disney, even though it’s loud and crowded. The sensory input from the rides seems to overshadow the downsides, at least for a while, so we’re going to head down again, and as always, get the special assistance pass. SO well worth it. If your child is disabled, autistic or otherwise, Disney is wonderful in dealing with special needs children, so don’t hesitate to ask at Guest Services for the help you and your child(ren) need. Without that help, our annual passes would shrivel up in a drawer somewhere, a lot of wasted money, but instead, those passes are now fun, family-oriented Occupational Therapy.

This week, ds has an orthopedist appointment. We want to see if he still has fat feet or pronated ankles or rotating knees and hip. The whole ‘my legs hurt’ issue is one we definitely want to clear up before he’s growing more, and this appointment should help us determine whether or not there are any real problems or if this is just another part of autism spectrum disorder, as one doctor has told us…but we’re not quite ready to just leave it at that if there’s something we can do to help him feel better.

Back to work now — and go vote!


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