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.
Posts Tagged ‘ASD’
Posted in ADD, ADHD, advocate, American Tradition, ASD, autism, Classic Autism, daughters, Fibro Fog, holidays, life, motherhood, ODD, Oppositional Defiant Disorder, parenting, PDD, PDD-NOS, Sensory Integration Disorder, Sensory Processing Disorder, silliness, SPD, women, Working Mom, tagged ASD, autism, Autism spectrum, Child, Family, fireworks safety, holiday safety, July 4th, Parent, parenting, PDD, Sensory Integration Disorder on July 4, 2013 | Leave a Comment »
Due to textural “issues” my middle daughter, dear sweet Gracie, detests many foods. We can thank Sensory Processing Disorder for this. She has recently figured out that there are some foods that she might otherwise enjoy if it weren’t for the texture. I don’t press her on the issues, ie. I don’t force her to eat what she doesn’t like. I will offer her foods I’m sure she would dislike and has declined in the past just in case she chooses to try it. Sometimes there’s success and sometimes there isn’t. Sometimes she’ll taste it and swallow it, but never takes another bite. That’s a success. Most times she lets it sit on her tongue, or touches it with the tip of her tongue, and then runs to the sink or garbage can to spit it out and then rinses her mouth with a drink she enjoys. If she remembers to spit it into a receptacle that’s success. The rest of the time it ends up spat out vigorously on the floor complete with facial expressions and vocalizations letting me know just how offensive it was.
Tofu in any form typically ends up on the floor. In the past couple of weeks, she held it in her mouth long enough to make it to the garbage can. I was just happy that she was willing to taste it to see what spices I was using to prepare it. Each and every time, she insisted it was nasty with a nasty texture. With vigorous spitting.
Last night I cubed up some extra firm tofu. I put it in a pan with a little butter and olive oil, chili powder, cumin, dried onions, and Lawry’s salt. Just enough to season the olive oil and coat the tofu. Then I tossed the tofu enough to heat it through and soften the dried onions. Anna took half, and I took the other.
While watching TV with our bowls of tofu, Gracie came over and started sniffing the air. I looked at her suspiciously, and wondered if I should bother making the offer or just give up. She was expecting me to make the offer, so I told her what I used to cook the tofu with.
So she was anticipating what the flavors would be like. Interesting. She still looked at the bowl and came closer, so I offered her a small bite. She chewed it and rolled it on her tongue which alone was progress regarding tofu. Because it was expected behavior, she ran to the toilet and I could hear her spit and flush.
But then she came back with the same expectant look that I would offer her a bite. I’m a glutton for punishment, so I offered her another bite.
And she CHEWED IT.
And she SWALLOWED IT.
And she OPENED HER MOUTH FOR MORE.
She gobbled down half of my bowl. That means she ate a quarter of a container of tofu. She was extremely proud of herself for ignoring and then “getting over” the texture enough to decide that maybe it could be enjoyable. She even asked me to make it again the exact same way.
I’ll be honest… it’s the next day and my head is still spinning.
Posted in ADD, advocate, ASD, autism, Classic Autism, daughters, family, life, motherhood, ODD, Oppositional Defiant Disorder, parenting, Sensory Integration Disorder, Sensory Processing Disorder, tagged ASD, autism, Christmas, Family, Gracie, Mommy, Mother, parenting, Sensory processing disorder on December 28, 2012 | Leave a Comment »
This morning it’s very clear that the vacation “routine” (or lack thereof) is getting to Gracie. She’s overly sensitive, agitated, moody, grumpy, argumentative, bouncy, and flappy.
It’s always difficult for her when she’s out of the school routine even though she would almost always rather be home. This time is more difficult because I’ve been sick since the middle of the night on Christmas. At least it waited, right?
She’s testing her sisters’ patience this morning, so they’re going back and forth between having some fun at her expense and trying to teach her life lessons. In the life lessons they go back and forth between taking a hard tack and being gentle. No matter the angle they take, they get the same result: screeches and shouting and nothing for their efforts.
Anneliese finally simply said, “Gracie when we make you mad no matter what even when we aren’t trying you just have to ignore us.”
Gracie: “No I do not.”
Anna: “Gracie, you just have to learn to ignore us.”
Gracie, clearly disgusted and incredulous: “That is not something you can ‘just LEARN!’ You can not ‘learn’ to ignore! That is hard!”
Anna: “I don’t know what to tell you. You just have to.”
Now the trick will be getting her to allow me to get her to do some sensory activities. She hasn’t been receptive so far. I got a kick in a shins and a swat toward the face for my efforts several minutes ago.
It’s time to go re-teach the sisters that when their sister is on the verge of a meltdown, you back away. It’s the whole Burning Building comparison. If a building is on fire, would you run into it? No? Well, when your sister has days like this she’s a burning building. Move away from the burning building. You likely won’t teach her anything, because it will just burn up. Wait until the fire is out and it’s been rebuilt. And she stops using the very literal, “Wwaah” to get across the point that she’s upset and to start her wailing.
I probably should have said, “It’s time to go rescue the sisters…” and I said, “re-teach” instead ha ha. It’s because they really are so good about teaching her. They’re wondering teachers for her, and she pays exceptional attention to them. Most of the time they actually can calm her down without using sensory tools. She doesn’t want to be upset with them, and she doesn’t want to hurt them. When things like this morning happen she comes away from it feeling like a bad sister. In fact, yesterday she accidentally-on-purpose-but-really-accidentally ruined something Anna had set up. It could easily be redone with some patience, but the look of hurt and annoyance on Anna’s face made it clear to Gracie that she had done something wrong even though Anna told her that it was all right.
Gracie: “I feel like I must be a bad sister.”
Anna: “No, Gracie, you’re not.”
Gracie: “I feel like I must be always doing the bad thing. I am a bad sister.”
Anna: “No, Gracie, you’re not.”
Gracie: “But… I feel like I always hurting my sister! I not acting like loving my sister!”
Anna: “Gracie, I know you love me. I love you.”
Mom: “Awww, girls, why don’t you hug and make up?”
Anna: “Mommy, I’m just not ready to hug Gracie yet. She did upset me. Gracie, you need to help me fix this.”
Gracie, sniffling: “Okay.”
- Gracie Feels Better (littlefallofrain.wordpress.com)
Posted in ADD, advocate, ASD, Asperger's Disorder, autism, daughters, life, motherhood, ODD, Oppositional Defiant Disorder, parenting, PDD, PDD-NOS, Sensory Integration Disorder, Sensory Processing Disorder, SPD, tagged 9 years old, ASD, asperger's disorder, autism, Autism spectrum, Bath, classic autism, girls, Gracie, Luna, PDD, pdd nos, Sensory Integration Disorder, Sensory processing disorder, SID, SPD, Word game on May 23, 2012 | 1 Comment »
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.
- My Greatest Hope (littlefallofrain.wordpress.com)
- #AutismPositivity2012 To “I Wish I Didn’t Have Aspergers” (littlefallofrain.wordpress.com)
- Love, Pets, Autism (littlefallofrain.wordpress.com)
Posted in advocate, ASD, Asperger's Disorder, autism, family, life, motherhood, parenting, PDD, PDD-NOS, Sensory Integration Disorder, Sensory Processing Disorder, SID, SPD, tagged ASD, autism, autism vaccine, macaques, mercury, mmr, monkey autism, monkey science, monkey vaccine, PDD, pdd-nos, Sensory Integration Disorder, SID, SPD, vaccine on May 9, 2012 | 1 Comment »
This is a continuing controversy that has been debunked over and over and over ad nauseum scientifically. It’s been discussed in circular arguments.
This is an excellent blog post as to why that e-mail forward about monkeys somehow proving the MMR vaccines and/or mercury in vaccines are to “blame” for autism is so ridiculous.
Posted in ADD, advocate, ASD, autism, daughters, family, ODD, Oppositional Defiant Disorder, parenting, PDD, Sensory Integration Disorder, Sensory Processing Disorder, SPD, tagged anxiety, ASD, autism, Disease, Family, Grace, Gracie, Health, Home, is it tic or tick, Lyme disease, PDD, Sensory Integration Disorder, Sensory processing disorder, SID, SPD, Tick, tick check, Tick-borne disease on April 26, 2012 | 2 Comments »
My girls all came home from school happy and cheerful and it was a wonderful homecoming. They all greeted me, smiled, and there weren’t any hints of sibling armageddon.
Then came the e-mail titled simply, “Grace.”
Mrs. Para-Professional pulled a tick off of Grace’s pants today after recess. You might want to give her a good look when she gets home today.
*names have been changed to protect those who have not given permission to participate
Is it horrible of me that my first thought was, “Of course it’s the child with Sensory Integration Disorder that I have to do a tick check on.” My next thought was, “Of course it’s the child with the thickest, curliest, coarsest hair, longest hair. This is going to be so much fun.”
For the record, it was the opposite of pleasant. This is one part of parenting that “they” don’t tell you about before becoming a parent. The necessity of tick checks and the joy of doing them. How thorough you have to be in doing them. How you have to explain it to your child adequately and get across how important it is without giving them panic attacks.
During the tick check, Gracie did help. I had her in the bath tub to make it easier, and we made sure that her freckles weren’t ticks. The girl who hates freckles. I think she was hoping her freckles were ticks so that they would come off. She kept trying to convince me that each freckle was a tick and needed to be scraped off. Yeah… one freckle has a soon-to-be scab next to it now.
Luckily we came away mostly unscathed. My daughter is tick-free. Being such, it’s time to go prepare the lovely rotisserie chicken that The Mister was kind enough to pick up from the grocery store for me.
By the way, every time I use Gracie’s name in a post, my tag suggestions from W-P are hysterical. They are God, Theology, Christianity, Religion and Spirituality, Heaven, and other religious related tags. I only just now figured out why those tags pop up in so many of my posts.
Posted in ADD, ADHD, advocate, ASD, autism, daughters, family, life, motherhood, ODD, Oppositional Defiant Disorder, parenting, PDD, Sensory Integration Disorder, Sensory Processing Disorder, sisters, SPD, tagged ASD, autism, Autism spectrum, CBS News, Fragile X syndrome, GRN-529, Jacqueline Crawley, Mental Health, Mouse, National Institute of Mental Health, National Institutes of Health, Symptom, Thomas R. Insel, Translational Medicine on April 26, 2012 | 3 Comments »
This could be the Mama Bear coming out in me (gosh, it really must be because I HATE the term Mama Bear), but this so-called experiment and drug GRN-529 (article pressed below with link) that supposedly reduces autistic symptoms in mice rubs me completely the wrong way. The article is very careful to refrain from calling GRN-529 a cure and to state that it’s treating… no wait… REVERSING symptoms of autism, such as making the mice more sociable and minimizing obsessive-compulsive behaviors. But tagging it as a drug that specifically reduces ASD symptoms… especially when those qualities are present in so many other different disorders and are so often simply personality quirks in people… it bothers me as a whole.
Of course there’s the whole “messing with the synapses and neurotransmitters of the brain” thing. Considering these mice weren’t actually given autism, since that’s impossible, but that they were manually given symptoms that’s one of my reservations with this experiment. I also have issues with the mice being inbred on top of their manufactured “symptoms.” Maybe that’s a mountain out of a molehill, and I can’t quite articulate right now why that one bothers me so very much, but it does. I think it’s also a bit disingenuous to claim that it’s not trying to cure ASD when it’s attempting to target the neurotransmitters the way that they would.
Don’t get me wrong here, I’m not against medications when they’re warranted. I’m not against researching Autism Spectrum Disorders and all of the surrounding issues. I think part of what’s bothering me is that the more I learn, the more it seems to me that ASD is a collection of neurological differences and disorders. I believe that at its core, ASD is genetically based and ASD’s affect a wide array of neurological issues.
The behaviors can be so very difficult to deal with as a family, as a parent, and especially the child who becomes a teen and later an adult. The destructive behaviors in high functioning individuals should be approached on an individual basis. I worry, I think, that a drug like GRN-529 might end up being something that is “pushed” much the way ADHD medications are pushed for highly active and spirited children that aren’t actually ADHD. Don’t like the symptom? Drug it up even if it’s not therapeutic. Let’s make everyone else’s lives easier. That might sound contradictory coming from me, since we have Gracie (my darling 3rd grader who has Autism) on a low dose of an ADD medication along with her seizure medication. She’s able to concentrate and work at school. She’s been better able to follow directions. In her own way she has commented on her improved ability to focus, and that she likes that feeling. She has less anxiety while at school because of it. She has less anxiety about bed time than she used to (granted it’s still there, but not like before). We’re also in the decision-making process for our eldest daughter regarding her ADHD. It’s not easy making these decisions and figuring out if what we’re considering tips the scales in “we’re doing this for her and not for us” favor.
This particular bit of mouse research feels a bit misdirected. I know that the research itself is much more complicated than the article is laying it out to be, but ASD is so much more than that area of the brain. It’s so much more than OCD and social awkwardness. So maybe my feeling is that this bit of research is missing the point more than anything else.
Or maybe I’m over-reacting or misunderstanding or being overly critical or (gasp) all three.
- Experimental Drug Improves Autism-Like Symptoms in Mice (abcnews.go.com)
- Agent reduces autism-like behaviors in mice (naturenplanet.com)
- Experimental Drug Eases Autistic Behaviors in Mice (news.health.com)
Posted in ADD, advocate, ASD, autism, daughters, diverticulosis, family, fibromyalgia, lactose intolerance, migraines, motherhood, ODD, Oppositional Defiant Disorder, parenting, PDD, school, Sensory Integration Disorder, Sensory Processing Disorder, SPD, tagged ASD, autism, Child, Fibromyalgia, Grace, K through 12, K-12, PDD, school, Sensory Integration Disorder, Sensory processing disorder, transitions on April 24, 2012 | Leave a Comment »
Transitions. Transitions suck. I detest them because my daughter detests them. Because of our difficulty with transitions on a daily basis I’ve come to despise school vacations with a passion. My daughter already hates school because she has to transition from sleeping to waking and from indoors to outdoors and from the bus to off the bus into the school. Granted, she does really well leaving school and coming home.
Just to give you an idea, she also hates leaving home to go just about any place else. We have to use very strong motivation to get her to go almost anywhere that isn’t home, including playing in the yard outside. Being in the house is comfortable and safe and stable. Things don’t change much. The lights, scents, colors, and textures don’t change at all. The sounds are within her control for the most part. Anywhere else, those things are out of control completely. There are only a few other safe places to her, but we still need to coax her to get to those places most times because of the transition it takes to get there.
You can well imagine now why we have such issues every single morning getting ready for school. Even if I home schooled her, I suspect we would have this problem. Although if I home schooled her she would want to play video games all day long and wouldn’t comply with the program, let alone the fact that I would have no idea how to educate her.
When we have school vacation, or even just a day off from school due to a teacher inservice day or a sick day, it throws off our entire routine. We have our home routine and school day routine, and once we get her involved in the school routine she does get invested in it. The difference is she’s much more emotionally invested in the home routine even if she feels as if she MUST follow through with whatever routine she starts. That’s one benefit of the need for routine when it comes to transitions.
The last two mornings haven’t been pleasant. Yesterday was simply… tragic. She gets so distressed at the fact that she’s awake even when she wakes up on her own, and then the thought that she has to get out from under the covers. She becomes combative over beginning the routine. She screams insults and edicts, and hurts her own ears and body. I can commiserate on some level since I’m going through a particularly difficult Fibromyalgia flare-up of my own since Sunday. Everything feels excessive to me, and I’m having some trouble handling the physical parts of her lashings out. Today was better for Gracie than yesterday was, and luckily once she does get to school she hops off the bus and actually SKIPS TO CLASS.
She freaking skips. She skips into her class room with a smile. This happens most mornings, I’m told. She’s a pleasure to have in class. When I have to visit the school for one reason or other and I happen to see her in the hallways she’s always looking happy. She used to get so distressed at seeing me at school whether it was planned or not that I’d have to take her home with me. She fusses a bit now, asks if she’s supposed to come with me, but if I say no there aren’t tantrums. Of course if I do have to pick her up for an appointment she’s ecstatic to leave and that transition is nearly seamless except for the fact that it’s an appointment and not coming directly home. Unless we’re going to her Auntie Tracy’s house. Any time we go there it’s a perfectly seamless transition. Every single time, because her best friend Ella is there.
Anyway, it’s not as if she actually hates school. I know that when she screams in my face and is kicking and flailing at me that she hates school every morning that what she means is she hates the transition process no matter how gentle we try to make it. We have some good mornings, but statistically they’re the opposite of good. Especially after school vacations.
Therefore, eff you school vacation. Especially Spring Break, since Summer Vacation isn’t very far off and February Vacation wasn’t very long ago and we had to deal with that shit barely two months ago.
Eff you unkindly.
Posted in autism, family, life, motherhood, ODD, Oppositional Defiant Disorder, parenting, Sensory Integration Disorder, Sensory Processing Disorder, tagged ASD, autism, Family, Home, Mothers, parenting, Sensory Integration Disorder, Shopping, Six Flags on January 24, 2012 | Leave a Comment »
Oh boy, can I relate to this article. Four years ago I had an incident with a woman at a store where there was a very ugly confrontation on her part and I was forced to stand up for myself and my daughter because I not only had her with me, but my other daughters too. I’ve never had quite as bad an incident unless you count insensitive teenagers at Six Flags and other places, but we do get our fair share of idiots almost wherever we go. Many of them are Mommy Drive Bys and they don’t know any better, but I do wish people would think before they speak.
Posted in ADD, advocate, autism, family, Recipes, Sensory Integration Disorder, tagged Anna, ASD, autism, bladder infection, Child Health, Daisy, Family, Gracie, Health, Home, Mothers, parenting, PDD, Sensory Integration Disorder, SID, UTI on January 17, 2012 | 2 Comments »
I know most moms tend to get a bit misty-eyed when their children are sick. Most moms would take the germs and illnesses and disorders into themselves if only it meant their children wouldn’t have to suffer.
Oh, if only.
We had a snow storm blow through during the night dumping about three inches on us last night. My sweet Gracie is sensitive to barometric pressure changes as I am, so on top of her other “not feeling well” problems she had a headache. She slept fitfully last night, waking repeatedly to check to see if she was still in bed with me and to make fearful trips to the bathroom.
She was a trooper this morning driving her sisters to school. There was a snow delay so she could have stayed in bed longer but she was so uncomfortable she got up when she normally would have. We had to drop off the urine culture we collected last night before dropping Anna off at school, and Gracie could smell it before we even walked into the office. I couldn’t smell a thing, and neither could Anna but it was all she could smell. When we got back outside she just kept breathing in the snow-scented air as deeply as she could. She even preferred black burning diesel smoke from a passing tree cutter to the smell inside that lab.
When we came home she snuggled up with me and Daisy for a while, but kept wandering because she’s having trouble getting comfortable. She even ate some yogurt. She’s been napping on the couch for a while getting some much-needed rest, hopefully fighting off some germs. I’m praying that we’ll get the results of the cultures soon so that she can get her medicine and start to feel better.
I know how awful these things feel. I know how uncomfortable they are, how miserable they get. I feel horrible no matter while child gets them. It just seems more… I don’t know… pitiful? sad? heartbreaking? when it’s Gracie because I know it’s progressively worse for her than the other girls. She waits longer to say something. But she also feels the pain differently and more profoundly. It’s harder for her in so many ways because she has to work so hard to communicate how she’s feeling. She’s forced to communicate yet that’s the last thing she wants to do. She’s been nonverbal all day except to tell me her stomach hurt and then the screaming in the bathroom. She starts a sentence and then stops.
I know this will end. I do know this. Today feels like the longest day ever, yet it’s only 1:15 PM. We’re further along than we were yesterday and even last night. But it’s dragging on. I can only imagine how she feels, especially since her concept of time is so different.
UPDATED: Our pediatrician is great. She called to check on the little princess to see how she’s doing. They called the lab but the results weren’t ready yet, so the doctor agreed to do a broad spectrum antibiotic because of how much pain Gracie is in. I didn’t even ask her to do that. She just saw how miserable Gracie is during the appointment and knew that it’s getting worse. She even made sure that the Rx is in pill form since the girl won’t take liquid meds. She’s already had her first dose and gets her last one at bed time. We’re on the road to feeling better!
- Illness and Autism (littlefallofrain.wordpress.com)
- Gracie’s Rules Part II (littlefallofrain.wordpress.com)