Posts Tagged ‘Sensory Integration Disorder’


I ended up wearing rainbow colors that day that I wrote about doing anything, even wearing blue. I just… I realized that supporting her meant more than wearing the blue because it’s her favorite and she asked me and she thought I’d be celebrating her. It meant so, so much more and I tried to explain why I wore a rainbow-flower skirt with a purple shirt (my own favorite color) in a way she could understand. But how do you explain that wearing blue, lighting it up blue, is a trigger event and silences Autistic Voices? That anything explaining away why it’s okay is really not okay?

And that’s what I think I did in that entry, and I wholeheartedly apologize, no qualifications.

So how did I explain to my daughter why I broke the blue promise…

Rainbows and flowers are love, and everyone loves flowers. Autism is full of wonderful colors, not just blue, and even if the flowers in my skirt were fuzzy at the edges they were far prettier than puzzle pieces all over the school walls. She nodded in agreement.

I told her that I wanted her to be able to choose from all of the colors in the rainbow when she’s making friends, when she’s thinking, when she’s getting dressed, when she’s looking outside, all just like when she’s painting or making crafts. She nodded more with each example.

I told her that an agency named Autism $peaks created the Light It Up Blue idea, and that we don’t like all of their ideas because some of their ideas include wanting to cure Autism. I asked her if she remembered hearing about that several days before, and she nodded with a Very Serious Expression on her face.

Then I explained that there are other supportive agencies that want to help her and others like her grow and be happy, and learn to be a self-advocate as she grows up and becomes a teenager and an adult.

I explained that sometimes we were going to have to have different kinds of conversations now about how some people think Autism is not a good thing and how we can change those ideas by showing them the good things and teaching them about the ideas that they don’t quite have right. That sometimes people believe things about Autism that aren’t true, but that we can help educate them. She nodded. She seemed to like the idea of being an educator instead of the student.

I explained that there would be times we would be talking about the better ideas that Mommy has read about from the good agencies so that Mommy can better understand who is a helper and who is not… and that I think she’s getting old enough to learn those things too.

She nodded her head, with a furrowed brow, and said, “Mm hmm.”

“Do you have any questions?”

“Can I still wear my blue skirt?”

“Yes. Always. You can even keep blue as your own favorite color.”

“Mm hmm. Yes.”

“Do you want to ask me more?”

“I don’t know.”

She walked away. So that was that.

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I would love it if as a mom and ally, I didn’t have to defend Autism. Little babies and children don’t need to be protected from Autism at all costs.  I would love it if society didn’t treat Autism in that way.  I hope that my Sweet Girl never has to defend Autism. She should never have to defend her very existence. I’ve been thinking about a conversation I had with her a couple of weeks ago that I drafted, and am finally sharing.

My Sweet Girl recently found out that there are people who think Autism is Very Bad and want to cure it, prevent it, stop it, and that they spread misinformation about it. When she heard a doctor and someone else who was supposed to be some expert talk about the MMR vaccine and Measles, the pros and cons, the arguing and veiled insults, she shot her head up as soon as the woman (not the doctor) brought Autism into it. She said something negative about preventing ASD, curing ASD, blaming the MMR and epidemic rates, and the usual propaganda prattle. The Doctor thankfully had his head on straight and refuted the claims this loon was making.

The look of confusion on Sweet Girl’s face would have been amusing under any other circumstance, but I knew by the quickening of her breath that she had some understanding of what that woman said, and it wasn’t something I was ready for because I worried that it wasn’t something she was ready for.

And so I was cursing the Today Show for ramming the measles/vaccine/autism discussion during school-preparation time.

“Why did they say that? What did they just say?”

“There are some people who think Autism is caused by traumas, errr, injuries to the brain. There are some people who think that vaccines cause an injury that makes Autism, and that vaccines can cause other injuries so they don’t trust vaccines. People are getting the Measles right now because a lot of people stopped giving their children shots. They think Measles is safer than the shots.”

“That is stupid, shots are medicine. You need medicine. Shots stop sick before you get sick.” ::dirty look:: “I don’t like needles.”

“I don’t like getting shots either.”

“I do not want to take away my Autism,” she said, pronounced like AWT-izm.

And then the hard part.

“Why do people want to stop my Autism? Then I would not be here,” and there was an edge of hurt in her voice mingled with disbelief.

“I don’t know the answer to that, honey, except that maybe those people just don’t understand Autism or how to look for the talents instead of the stuff in Autism that makes things hard for you and other people like you.”

“Yes, it is hard. I need my Autism. I love being… what is the word? I love being Autism?”

Tears started to well up.

“The word is ‘autistic’ sweetie. Do you love being Autistic?”

“Mmmm hmm.”

“Are you happy?”

“Mmmm HMMMM!”

“That makes me happy. I love you and your Autism.”

 

With a nod she walked away. As you can see, my daughter is kind of amazing. Just like her sisters. In her own words, at only 12 years old she let me know in no uncertain terms that she doesn’t want a cure. She thinks the idea of being injured is stupid (we’re working on reducing the ableist language like stupid and idiot, sorry it slipped in). She’s shocked at the idea that anyone would want to change who she is or prevent more people like her from being born.

She’s delighted when she finds out that other classmates or other peers are like her. There’s a sudden new understanding and behavior shift with them when she finds out, and they’re just happy to “be.” She has a compassion for difficult behaviors when she knows that they might have autism or something similar.

As I said, she’s kind of amazing.

We’ve been honest and open with her about Autism from the beginning when we realized it helped her to know. It helped her form questions when she had them. Since she’s known for so long, since she was 4 1/2 or so, she’s never “not known” that she’s Autistic. I trust her instincts.

She knows that there’s a reason she thinks differently, works things through differently, does things at a different pace, has different talents, approaches things differently, has certain obstacles and challenges that are really difficult and upsetting, but because we accept every single part of her she accepts every single part too. Behaviors that she actively dislikes, or knows that need to change because they could be dangerous because we’ve talked it out, she works hard on. She asks questions and she watches. She tries. She does a lot of watching and experimenting. She doesn’t fear herself, and I don’t fear her. If something seems impossible, we see if there’s an accommodation to make it easier. We adjust. We accept.

I don’t feel sad for her. I don’t want anyone to feel sad for her. I don’t want anyone to think that she’s miserable or suffering. She’s not “suffering with Autism.” She’s autistic, and she’s not suffering. She’s growing into a young woman. Would anyone say she’s with femaleness? And suffering with femaleness? Or she’s suffering with blondness? She’s not. The autism is as much a part of her as her talents to make crafts, draw, paint, write stories, sing, connect with babies and toddlers and animals.

I know she’s going to have opportunities and she’s going to find her own way. I’ll encourage her talents and continue to encourage self-advocacy and education about her own disabilities. I’ll protect her and teach her, guide her, answer her questions, and hope that I’m doing this the right way while I try to learn more about her every day. She loves to learn about herself. She looks at me with impatience, though, when I ask questions to try to learn more about what’s inside her thoughts processes.

“You ask too many questions.”

Yes, honey, and it will never stop.

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Today’s post is inspired by this blog entry on another blog I follow:  i like being autistic | a diary of a mom.  I had this in my head for a while, but as usual Jessie over at Diary of a Mom seems to read my mind, heh heh.

A couple of weeks ago, we were out at a barbeque.  It was a gorgeous day; sunny with a few clouds and a breeze; hot but not unbearable in the sun; completely perfect in the shade.  All of my daughters were enjoying their day playing with their friends and having fun.  Sweet Girl was having a great day interacting and self-advocating and even finding foods to eat. I sat for a while talking with someoneat the party and we got to talking about Autism as frequently happens. She asked me some questions eager to learn about ASD in general and some questions specific to Sweet Girl, and she became thoughtful.

Then the Big Question that I dread more than any other, and am inevitably asked.

“Do you ever wish she didn’t have Autism?”

I tried to explain that I love her, that her ASD makes her unique, and I wouldn’t change her.  The questions came about along the lines of,

“What about the difficult moments”

because obviously, I white wash those moments for people when she’s having a great day… because I want her and our family and friends to enjoy those days.  When they see her, she’s on her best behavior most of the time.  She’s “on.”  She’s at an age now where she’s self-conscious about melt-downs, and it’s not something that I ingrained into her.  She’s never much liked anyone even seeing her cry.

I give them glimpses into her behaviors and the rough moments and hours and days if it seems they really want to know… most people who know her, though, have seen it firsthaStillnd.

Still, it’s exhausting to talk about.  I also realize that it contributes to the negative down-talk about Autism.  It perpetuates the belief that Autism is more negative than positive.  It perpetuates the belief that as a parent, I must want my “real child” rather than the autistic one.  I’ve blogged about her, and still do, about the bad days.  It’s partly what the blog is for.  It is, after all, my blog and yes, as a parent, I need support but I need it as a parent to three children.

“I would not change her, even for the most difficult moments.  I won’t lie, it’s hard.  But she’s wonderful.  I couldn’t change her.  I couldn’t take away such an important part of her.”

I tried to explain all of the positive up-talk that we’ve spent years doing, how she’s not the only one working hard to cope with a world not made for her… we’re working hard to live in that world WITH her.  We’re working hard to understand her.  We’re working hard to make sure that she knows that our efforts are never to change her, but to help her learn new things and use her knowledge to be more independent.

We’re working hard to try to allow her to become the best self-advocate she can become, and prepare her for future relationships and jobs and life and we maintain a negative outlook and view her ASD as a negative thing… it does no good. If we view the ASD as our obstacle, then we’re bound to struggle harder and grow to resent it.  Instead, the obstacles are better viewed as things that we and she need to educate ourselves on and learn to cope with.  Her personal obstacles and difficulties are things we help her with every step of the way.

Some days are great, some are bad.  Some of the concepts she gets eventually, and some are much harder. I always have to go into something with her assuming that she understands what I’m teaching and encourage her to ask questions.  I assume intellect and willingness to learn.  I want her to always assume that I love her in spite of her most difficult traits, the same as her sisters and her daddy and other family and friends.  She’s no different that way. But suddenly I could tell I was losing this person I was talking to.

I was “teaching” too much.  Sometimes I lecture without meaning it to come out that way.

I decided to try a different tack. I did something that I usually only do in private, a game that we play that has helped reinforce just how valuable her entire self is.  I knew I was taking a risk in asking her at all, at having her response be to tell me,

“SHUT UP! MAY YOU NOT SAY THAT TO ME?!!??”

I called Sweet Girl over to us and got her engaged.  I asked her the question I’ve asked before:

“Hi Honey.  I was wondering, would you like me to hold onto your Autism for a while? Maybe put it in my pocket and keep it safe?” (other variations have been asking if I might borrow her Autism)

“NO! You may not have my Autism! It is MINE! I need it!”

“Okay! Just checking!”

We had a smile over her response, I gave her a hug, and she skipped away.  I counted myself lucky that she didn’t scream at me for asking a clearly stupid question.  She would have been justified.  I felt Sweet Girl had made the point herself very firmly and more succinctly than I ever could.  My dear 11 year old self-advocate.

I’ve been catching her on my Kindle recently going through the photo album, which is directly connected to my Facebook photos.  She’ll pore through those photos for hours.  Sometimes she’s looking at the cats’ pictures; sometimes her little cousin; sometimes when she and her sisters were little.  But sometimes… sometimes she’s looking at the Autism Info-Graphics and inspirational quotes and images.  She touches them and caresses them, smiling.  Sometimes she asks me why I found them and shared them on Facebook so that she can hear me say,

“I saved them and shared them because you’re special to me, and that means your Autism is special to me too.  It’s part of you and I love every single bit of you.”

::nodding:: waiting for more:: “Yes, that is good.”

“I’m happy you think so, honey.  I love you just the way you are, just as much as I love your sisters, always, and the things that make them special too.”

::nodding:: wanting more::  “Yes, mmm hmmm.”

“I want to teach people that don’t know about Autism that Autism might be hard for you sometimes, but it has lots of great things about it too.”

“Yes, I have my Autism.  Do not take my Autism.  No one can have it, no one can take it away.” ::frowns:: “No one should take it away.” (this was after a discussion when she asked about an info-graphic that talked about ‘cures’ and the thought of curing her ASD made her angry) “These are MY pictures, Mommy.  You saved these for ME.”  ::soft smile::

And there you go.

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I figured it out! Why my shoulder/shoulder-blade/myofascial pain has been so agonizing since I got up yesterday.  I blamed my PCP from my Monday physical.  I think she’s only partly to blame.  Well, not her directly but those terrible examination beds.

I think the real cause was getting kicked and punched all up and down my entire right side from my thigh up to my shoulder from a particular child who really, really, really didn’t want to get out of bed and then didn’t want to get off the couch to continue getting ready to go to school.  I think she hit a Fibro trigger point and some nerves.

It’s only slightly better this morning.  I can function better, since I was able to keep up with the pain management, and getting some coffee into myself this morning = happier Jessica so far.  By the time I got back from, well, all appointments yesterday I was nearing “vicious” and I hope to avoid that today.   My mood certainly didn’t improve by getting stuck in traffic for two HOURS yesterday coming back from another annual appointment that women love during which my mood had lifted somewhat when I saw that their weight scale weighed me seven pounds lighter than my PCP’s scale.

A drive that usually takes 15-20 minutes.  Two hours.  No.  I almost got smushed and shoved off the road by a pair of semi-trucks when trying to merge into the insanity from other insanity because they were at the point where, you know, I had no choice but to merge and they just wouldn’t allow ANYONE to merge.  So I ended up having to take an exit and I got lost in Hartford and ended up over the river in East Hartford but got home far faster than if I had stayed in the traffic anyway.  So thank you, asshole semis.  You saved me even though you almost killed me.  It almost made the earlier 1 hour and 45 minutes worthwhile.  I should really thank my GPS for this one.  You know, since I got lost.

I need to remind myself to stay off of Facebook on the worst of the worst days.  I usually do, but not yesterday.  😦

Ok, so can I grow flowers if my husband let grass grow in my plant bed and we just rototill? Or do we have to lay down topsoil before planting? I have a fairy garden to put out and it wouldn’t have been a problem two summers ago.  😉

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I meant to reblog this earlier in the week.  It’s a holiday safety post for families with special needs children that have Autism Spectrum Disorder and Sensory Processing Disorder with tips on how to prepare for a more pleasant experience.

Prepare For July 4th ASD-Style | Ever So Gently.

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English: Independence Day fireworks, San Diego.The fourth of July is coming and it’s a time of national celebration.  It’s an excuse to barbecue, eat frosty treats, and light fireworks (if they’re legal in your state and the person who usually does them in your family or neighborhood still has both hands after last year).  Fun times, right?

Not if you’re a person with Sensory Integration Disorder and fall on the Autism Spectrum.  It’s not quite the blast it is for everyone else unless you help make some preparations first to ease what can be a painful series of experiences over the course of a day and evening.  I’m not talking about food preparations (although that’s one aspect), but other practical preparations that can help the day go much more smoothly.

The first rule of thumb above all else is to plan for the most difficult and worst scenario, okay? Plan for the worst and hope for the best.

 

 

 

 

  1. Safety first.  Go through safety rules and expectations before the event, and practice Wandering Prevention Safety (click here) while you’re at the events.  Discuss fire safety, especially if there will be a fire pit and/or a grill and/or roasting marshmallows.  Discuss pool safety.  Use a script, use social stories, use pictures.  But when you’re at the event, don’t rely on anyone else to keep an eye on your child as well as you will.
  2. When you get to your destination, make sure you A.) know where the bathroom is and B.) coordinate a Safe Room with the host and hostess to go to when your child feels overwhelmed and needs a break.
  3. If he communicates best in writing or on a computer or iPad or with sign language, keep that in mind while you’re out and make sure that he can communicate his needs to you effectively.
  4. Have an exit strategy aka escape plan in case things get too intense.  Pay attention to the signs and cues that tell you there might be an oncoming meltdown.  If typical soothing techniques don’t work, do your best to exit before the meltdown.  If you know that the flashing and/or sounds from fireworks will trigger a meltdown, make your good-byes before they start.
  5. Practice ahead of time if you can at a “practice picnic” with a script so that she knows what to expect ahead of time, within reason.   If you know who will be there, talk about those people and activities that you expect to be available.
  6. If your child,teen, young adult, adult… has a special restricted diet and/or they are self-restricting in their diet don’t count on your hosts to accommodate that diet.  There will likely be food and drink available that he will like, but it’s not a guarantee.  Try to bring some food and drink that you know for certain she will eat, and make sure there’s enough for three meals “just in case.”  Make sure there’s plenty of liquid for drinking to avoid dehydration.
  7. Bring an extra dose or two of all medications.
  8. Bring a first aid kit including something for bee stings.
  9. Bring a lovey.
  10. Bring some activities: in our house we call them Trigger Kits and Sensory Kits.  A Trigger Kit is something that has simple arts and crafts type items in it, be it paper and coloring books with crayons, colored pencils, and markers plus wet wipes, stickers, some clay or Play-Doh, and some colored beads with craft string.  A Sensory Kit is a plastic Gladware or Tupperware container full of dry, raw rice or dry, raw beans for sensory play with a small hand-held object that can be buried in it and “searched” for.
  11. Bring a body brush.  It can be a simple one specifically designed for body brushing, or you can do what we did and let your child choose his own depending on the texture of brush he likes being drawn on his arms and legs.
  12. If you haven’t learned already, learn how to do Joint Compressions.  There are some simple guidelines you can look up on YouTube.
  13. Bring soft foam or rubber ear plugs.  If she doesn’t like ear plugs, head phones are a good option too.  These are especially important for during fireworks, but many people with Sensory Integration Disorder dislike “crowds of people” noises, loud music, chewing noises, and other sounds that occur when large groups of people gather for parties.
  14. If there’s swimming, get the swimmer’s ear plugs and nose plugs.
  15. Bring sunglasses.  Bright sun can be more intense to sensitive eyes.   In our case, Gracie has transitional lenses built right in to her corrective eyeglasses.
  16. EDITED TO ADD: I can’t believe I forgot this one, but ALWAYS bring an extra change of clothes with you.  If the clothes get even the slightest bit wet or dirty, some children can’t handle it and have to be changed right away.  It’s also a good idea to have several changes of underwear.  😉
If you have additional tips you’d like to share, I would love to hear them in comments.

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Gracie 9 yrs old

Gracie 9 yrs old

Bathing time is a battle nearly every single time.  It’s rare that The Girl will ask to bathe without prompting.  Oh, and by the way, she hates it when I refer to her or her sisters as The Girl when I’m talking to the cats.  “Awww, Luna, did The Girl annoy you while you were sleeping?” Yeah, that gets a reprimand from Gracie.  She’s not The Girl in real life because of course she has a name that must be used.  I think that’s funny because she’s a child who loves word games.  She loves words that have dual meanings and dual spellings.  She despises similes, metaphors, analogies, and idioms, but she loves other types of word play.  However, that doesn’t mean I don’t use all of that to my advantage.

Sometimes all it takes is a play on words to get Gracie to do something that I need her to do.  I guess it’s a form of reverse psychology along the lines of, “Oh no, you locked yourself in the bathroom!” versus “Oh no, she locked us out of the bathroom!” wording.  I figured out how to get the child to bathe.  This is a Very Big Deal.   The ODD part of the Autism takes over and it’s almost always a battle.

“Gracie, it’s time for a bath.”

“I don’t need a bath.  I don’t stink.”

“It’s a good time to have a bath.  Your hair will be soft and we can get the marker and dirt off of your skin.”

“I DON’T WANT A BATH! I HATE BATHS! SHUT UP!”

“Gracie, if you don’t take a bath, I’m going to take your bath for you!”

“NO! IT’S MY BATH!”

::stomps upstairs while stripping::

Part of the trick is being willing to follow through with my “threat.”  Sometimes I have to go so far as to step into the tub with my clothes on, although she’s called me on that one once or twice so I also sometimes have to start taking my own clothes off.  That gets her to shove me out of the way and hop into the bath tub with a fierce,

“HA! I GOT IN FIRST! YOU’RE TOO BIG! IT’S MY BATH! YOU! CAN’T! TAKE! IT!”

Of course once she’s in the tub, she doesn’t want to get out.  🙂  I’m guessing this won’t work through the teen years or into her twenties.  WTF will I do then?

It was once explained to me that while it feels wonderful to be in the bath, as it’s great for sensory processing, it’s the transition from wearing clothesto “not wearing clothes” … then from being in the air and dry to being in the water… then from the water changing temperatures … dry hair to wet hair

… and then having to get out again and the anticipation of it all on top of the transitional changes and sensory issues.  I get that, I really do.  Which is why I’m relieved that for now, playing with words the way Gracie seems to enjoy doing distracts her so much from the initial transition of difficult sensory changes.

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