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Showing posts with label brushing. Show all posts
Showing posts with label brushing. Show all posts

Friday, 29 October 2010

An Autism Halloween Adventure: Beggar's Night, The Lost and Not Found, & Nerds at the ER

Posted on 07:33 by tripal h

I LOVE Halloween… I always have… constructing the costumes, organ themed music, bats and black cats, haunted houses, pumpkin patches and beggar’s night… SCREETCH… BEGGAR’S NIGHT… THAT IS WHERE OUR STORY BEGINS (and hopefully ends)!

This year was just as ordinary, yet profound. Let me explain, about 2 weeks ago Sahara started asking, “Trick or Treat, Yes?” Which is easily translated into, “Can we go Trick or Treating Now?” Up until this moment in time she has shown little to no interest in this particular activity nor has she had the speech to ask for it in advance… all huge milestones. So we created a visual aid to help her count the past 15 days… the excitement was building as we approached Beggar’s Night.

All morning she repeated her daily schedule over and over until she got to the part where she said, “Trick or Treat, Yes?” and would look at me with anticipation to confirm that today was the day! “Yes,” I would excitedly repeat, “after school… pizza… then trick or treat!” And she would smile and say, “Okay!”

[Fast forward… to the main event]

As we were getting ready for the big event, Sahara eagerly helped with her costume assembly… which the girls had helped me for the past 2 months construct… Golden Skirts and Tops with Egyptian Hieroglyphics sewn along the hems, head bands with golden coins dangling across their beautiful foreheads, with white capes… at the last minute we had to add a long sleeve black shirt and hosiery to keep warm. They decorated their already beautiful eyes with thick Egyptian black lines which turned into fancy swirls and golden (yellow) eye shadow.

The girls danced around me and wrapped me with toilet paper and drew even darker circles around my already tired eyes. Daddy threw on all black clothes with a golden sash… okay, that one was lame, but we ran out of time with our “Egyptian Family Theme” and his costume took the brunt of it. (Honestly, I don’t think he minded at all.)

So, it was cold and windy… but we trailed along in awe over the moment of normalcy both children were partaking… I say “both” because although Sahara was fully participating joyfully, cognitively, and with cleverness (she was successfully focused on how many Hershey bars she could capture tonight) … Emily was also indulging in a children’s activity without worry, and domination (which is partly the result of having a special needs sibling… she is always the one to control a situation in a life full of events that she has no control over). Laughter filled our little family bubble!!

Emily exclaims, “Look Mum your family tree!” as she points to a tree that had been toilet papered. Even more laughter…

[Fast forward to the last house]

Emily is chatting and smiling about how Sahara got more candy because she didn’t understand the rules of taking one piece… and I am laughing not only because what she is telling me is true, but because we are having a carefree moment... Then suddenly I hear a faint “CLINK”… I snap my head up and she says, “Your wedding ring!! IT’S GONE!!”

“What!?!?”

“It was on my finger, and now it is gone!”

I stay calm… let’s face it… I am not one of those women who need a ring on herself or ‘her man’ to identify that our hearts belong to each other… we have been through way too much together to have a piece of jewelry define our love, passion and respect for one another. In fact, that is how Emily got the ring. I haven’t worn it in 7 years (he hasn’t worn his since, well, probably our honeymoon 15 years ago). She found it a few weeks ago and thought it looked nice with her Golden Egyptian costume. I told her time and time again not to wear it outside, but to no avail she snuck it on to complete her costume. I suspect that deep down somehow having both rings (his and mine) brought her peace within her never-ending chattering mind… she has a deep need for connection with us.

[Back to the story…]

We got a flashlight from the lady at the house we just went to… NO luck! So my wedding and engagement rings lay resting upon the earth somewhere in the neighborhood… an omen? I think not! Did we punish her? I am certain that there is NOTHING I could have said or done to make her feel any more remorseful and horrible than she already felt… sometimes we are our own worse enemies… I am also certain that she fell asleep crying last night… the ring really meant more to her than I. She new someday it would be handed down to her(being our oldest daughter) and that hurts deep. We will go back out today and retrace our steps, but I am sure it is gone…

[The Loot…]

As the children went through their loot, we cringed at the amount of hfcs and dyes lying on our floor. We knew the kids would ingest more tonight than they had all year combined, which is why I always let them take the day after Beggar’s Night off from school… up late + jacked up on candy + tired = pajama day!!

Emily was still pouting about the ring while sorting, organizing and lining up the piles of candy in front of her; Daddy was upstairs changing into comfortable clothes; and I was on the phone with my sister talking when I saw Sahara dart out of the bathroom and into the kitchen. I got up to follow her and saw she had tweezers by her ear… I asked, “What are you doing?” She replies, “Ear!” “NO Sahara, we don’t put tweezers in your ear,” I see a flash in my head of her lying in my lap as Jim successfully pulled a dried pinto bean from the sensory box from her ear months ago…

HALT!

I listen to my gut and look in there… I think I see something. I quickly tell my sister I have to go and yell for Jim to come downstairs. I lay her on my lap and sure enough I can see something!! He brings me a flashlight and I see A PINK NERD in her ear… I look at Jim and say, “I don’t think you can get this one!” (Yes, that means we have done this before… why our children like to put stuff in their ears and noses is beyond me, but they do.)

[The ER…]

We have this routine down… but not when jacked up on sugar. The kids are antsy, the waiting room semi-packed full of random kids with face masks (and not the ones for Halloween, the kind you get to prevent spreading your germs). I cringe!!

The triage nurse thinks she can get the Nerd out… we say go for it!! She brings in this plastic pick like tool, swoops and… Nothing!! She tells Sahara to sit up, tilts her head and taps the other side of her head and shakes her head a bit… Nothing!! (Yes, that freaked me just a bit!) Sahara puts her finger in her ear before anyone can stop her and it went back to its original position. As the nurse confides in us that she used to work with autistic kids, she says she will make us a priority on the list to get a room.

Within 45 minutes of arriving we are escorting to a room in the ER. I note it is room 28… Emily’s favorite number... perhaps a good sign!

[Or maybe not…]

The ER nurse come in and attempts the same procedure as the first without luck… Sahara is starting to get agitated and I switch positions with my husband so Sahara doesn’t see my concern on my face. (I openly admit I am not calm in emergencies…. especially when my child is screaming in pain!) This nurse goes to get the charge nurse. When the Charge Nurse comes in she starts talking in a normal manner questioning Sahara... whom I answer for. The CN doesn’t see the nerd and starts to question us, “How do you know something is in there? … Did she Tell you? … If you did see it, what color is it?” She pushes my buttons “… just bc YOU can’t see it doesn’t make us or the other 2 nurses wrong… it is in there! We saw it!”

Nurse #1 looks again… “Yes, it is there [tells her location]”. The CN claims she sees it now and tries to swoop it out with the plastic hook… and makes Sahara’s ear bleed… Sahara is screaming, I am cringing, and Emily is repeating, “What is wrong with you mom?” Over and over again! Jim takes a deep breath and is once again our rock!!

Nurse #1 and the CN leave after discussing our options: 1) try the plastic hook again 2) flush it out with warm water… we choose 2.

[Enter Nurse #3]

“Hi Honey, what were you for Halloween?”

I snap, “She can’t answer you… she has autism!”

She handles my response well… I like her! We discuss with her Sahara’s sensory issues and our concerns about the flush. Sahara hates to get splashed with water and it will cause an instant melt down; she is already in pain, agitated, and emotionally spent. We ask her to let Sahara play with her stethoscope (one of her obsessions) to keep her calm.

[Nurse #3 leaves… Reenter #1 and CN]

“So you don’t want to do the flush,” asks the CN.

Jim impresses me with his calm, “No, we didn’t say that!! We are trying to explain the sensory and emotional needs of Sahara and what she needs to support her during the flush.”

“So, what do you want us to do?”

I ask for a surgical brush so I can brush Sahara first and they look at me like I am nuts!!

“Do you want a wash rag?” asked the CN.

“No, I want a small white surgical brush.”

“We don’t have any.”

“You are a hospital that doesn’t have a surgical brush?”

“Do you want an emery board?”

“NO!! I want a surgical brush… forget it I will just do the deep compression with her.”

“The deep what?”

(I am obviously dealing with nurses who have NO clue about autism or sensory issues. I am stunned since this is the same hospital we get all of our Autism Therapy from!)

They come back with a brush… but not the OT brushing protocol surgical brush… I tell them that won’t do. They leave and I rub Sahara’s skin hard with my hands, and then do joint compression. She seems to be calm.

[Enter nurse #3 and a new nurse #4 with a syringe that is HUGE!]

The syringe looks like it has a needle on it (it is a soft attachment to aim the water) and they start to say what they are going to do. I interrupt them and start to explain it to Sahara in broken phrases. I let her touch the syringe and tip, and she yells, “No, I don’t want to!!” The new nurse explains to us that the CN has told them to accommodate whatever requests we have, so I ask for a weighted vest.

… they look at me with puzzled expressions. I tell them to go to the dental trauma area and bring back a lead vest. They comply. After a few seconds of resting under the weight of the garment, Sahara seems calm once again. They demonstrate on me what they are going to do and water goes everywhere… down my clothes (trigger), on my skin (trigger) to the floor (trigger)… She starts to scream and thrash!!

I pray out loud for the Nerd to just pop out.

I quietly send her Reiki to relax her.

The long and short of it is… After another half hour of pain, screaming, and thrashing the nerd has dissolved from the warm water and is apparently gone. Nurse # 3 & 4 say they will send the CN in to confirm it is gone… we request someone else since we the CN couldn’t see it in the obvious position earlier. They FINALLY send in the attending doctor. He confirms that nothing is in the ear canal anymore, that the drum is red and will be sore, but otherwise she is fine and we can go home.

[When you think nothing else could go wrong…]

I tell Jim to take the kids to the car and I will get the discharge papers… after 10 minutes they arrive.

As I am walking to the jeep, I see Emily and Sahara running and crying. (Still not sure what happened other than ‘Daddy yelled at us’.) Everyone is tired and stressed to the max!! But, we all are able to calm enough to get in the jeep and head home.

… are you ready for this?

The plastic encasement on my key busted in half and the remote fell out in the dark at midnight in the ER parking lot!!

After looking for awhile I say, “F#ck it!! Let’s go…”

“Are you sure… “

“Yep, let’s just go!!”

The jeep won’t start!

Apparently you need the chip in the key remote to start the engine!!

Sahara is whining, Emily and Jim are out retracing their steps and I am trying to decide who to call to pick us up because at this point I am exhausted, my children are exhausted and my husband is exhausted and I just want to go home. I open my door to tell him to call his best friend and the remote gleams under the night post.

...the engines starts, we get fast food on the way home and everyone is zonked by 1:00 am.

[Happy Halloween!!]

Did I mention that Sahara was diagnosed with Infantile Autism on October 31, 2008? I vowed I would not let that ruin my passion for Halloween… like I said at the start of this really long (sorry it is so long) post, “I Love Halloween.”

Here are a few concluding thoughts: Yes, parts of last night sucked, but Halloween still kicks a$$! I have confirmed that I love my husband more today than ever! I don’t need a Rock on my hand as my hubby IS my Rock! My kids are making huge progress and have taught me the power of true unconditional love and for that I am grateful! And I am almost certain that all of my other jewelry is back safely in my room and that nothing else will go into the ear that doesn’t belong there.

Well, kind of, maybe certain…

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Posted in autism, brushing, Children's health, emotional health, Family Issues, fathers, gratitude, High Fructose Corn Syrup, holiday, laughter, marriage, sensory issues, Siblings, Stress | No comments

Tuesday, 23 February 2010

Bedtime Stemming and Emotions

Posted on 16:23 by tripal h
The clock flashed 1:11 am....

My ears had been listening to the non-stop vocal stemming for 4 hours now. My eyes could barely stay open. I had tried every trick I had up my sleeve; brushing, reiki, floor-time... This was just something we had to ride out.

1:24 am...

I was tired, I knew we had a busy day ahead of us; Music therapy, occupational therapy, physical therapy, and speech therapy. Mondays are our busy days... coming off of a 3 week bout of the kidney stones my mind and body was tired and weak. So tired! Patience has been drained from my essence... I snapped in a voice that must have seemed ferocious to her, "SAHARA, PLEASE GO TO SLEEP!!"

She started to cry. Not a tired cry, but a pissed off 'you hurt my feelings kind of cry!'. She was screaming on top of her lungs this dramatic forced angry cry!! Then she yelled, "I HATE YOU!" (pause) "I HATE YOU!"

I was stunned!!

I laid there in disbelief, not sure if I should cry or laugh. I rewound to the moment my older daughter, Emily, uttered those painful 3 words. I remembered the devastation in my heart and felt a twinge of motherly pain.

1:28 am...

I wasn't sure how to respond, so I laid there listening to the screams and cries of her processing the foreign emotion of being pissed off at her mother. I felt bad I raised my voice. I felt guilty knowing she couldn't control the stemming. And I felt helpless in the knowledge that if I interrupted her, she would have to start all over resulting in a long sleepless night.

1:30 am...

Part of me was quietly relieved as I reached over to rub her warm back. She uttered those hateful words! This had huge significance! It meant that she understood she was pissed off and she understood she was pissed off at me... not the stemming, not the autism, but at her mother for losing her patience. She had come out of her stemming and appropriately experienced her emotions.

1:34 am...

She rolled over into my motherly arms and rest her head upon my breast. She whimpered as she fiddled with my fingers. "Sahara, I love you," I gently whisper as I stroked her tears away. "I love you more than the infinite universe."

1:36 am...

All was quiet. I heard the rise and fall of her exhausted sleep. I brushed away my tears and sighed, "I am so sorry."



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Posted in brushing, co-sleeping, Floortime, language, occupational therapy, self empowerment, sensory issues, sensory processing, speech therapy | No comments

Saturday, 8 August 2009

The Ohio State Fair...A Family Moment!

Posted on 15:25 by tripal h
Every August we venture off to The Ohio State Fair… but let’s face it, this is not the ideal outing for a child with sensory issues. The loud noises, mobs of people, toxic food, and carnies are enough to make a nuerotypical person get on edge… but throw autism, specialized diets, and language deficits into the mix and you may just have a recipe for disaster.

But, not this year… maybe we are better equipped with preparing her for such an outing with deep pressure stimulation, packed snacks, sharing social stories based on what to expect, and of course allowing the girls to feel in control of the day. Maybe… it was because there were less people in attendance on this day, no lines for rides, and a breeze to take the edge off of the summer heat. Or maybe…. she is getting well and better able to handle the stimulation. I suppose it was most likely a combination of all of these factors.

Regardless, this year’s visit to the fair was our best to date; laughter, companionship, and good ol’ fashion fun.

This year we were able to ride on more rides… partly because she is older, partly because she found them either soothing or exhilarating and mostly because she didn’t attempt to crawl out of the flimsy seatbelts. Of course, after the 4th time of climbing the 166 steps to get to the top of the ‘big yellow slide’, I realized nothing was going to stop this kid or her sister. That is probably when we realized that our girls were capable of accompanying each other on the rides… allowing mommy and daddy to stand off to the side basking in the joy of their children sharing a moment of sisterhood.

Let’s not forget about the animals… which they both indulged; especially at the birthing center. (Yes, the young twin lambs even won my heart.) At one moment Sahara was completely captured by Elsie the Borden’s Butter Cow. Every time she rubbed Elsie’s head, Elsie would moo loudly. The timing was impeccable and gave Sahara the conclusion that Elsie’s moo was caused by the effect of her rubbing her—another moment of cognitive clarity that made me smile.

Daddy took Emily over to the adult rides and she got to experience her first rollercoaster… I am certain this fed her need for excitement and her never ending need for sensory input as well. When they returned she had a smile larger than life. I am sure they had a father-daughter moment that she would retain in the recess of her childhood memories.

While they were off having this moment together, I had a moment of my own… on the carrousel mounted on my own horse (another milestone achieved) I looked over and saw a 5 year old enjoying an age appropriate activity and saw a glimpse of her normalcy. Reclaiming her childhood has been one focus of ours, and The Ohio State Fair allowed us to see our hard work pay off!

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Posted in adventures, autism, brushing, Children's health, emotional health, fathers, Food Sensitivity, Home Remedies, laughter, self empowerment, sensory issues, sensory processing, Siblings | No comments

Friday, 31 July 2009

NEVER Brush Face, Chest or Stomach

Posted on 11:59 by tripal h

What would you do if you found out you were given a treatment protocol to do with your young child at home without knowing that there were specific instructions that you needed to take? And that the precautions were not addressed with you before, during or after you began treatment? In fact, you didn’t know that there were any warnings associated with a seemingly safe procedure until almost a year later!

Remember the old speech and occupational therapist that I fired… their lack of professionalism continues to haunt me. Yes, I know you thought I laid this to rest; honestly so did I… but here we go again! Only this time I am asking the question, “What do I do with this information?”

Recently, we ventured to Nationwide Children’s hospital to obtain a formal occupational therapy evaluation. During the interview I was asked about previous OT exposure. I refrained from saying what was really on my mind. Instead, I let her know that there were unprofessional circumstances that prompted her dismissal.

Somewhere during this evaluation the evaluator asked about a sensory diet.

“A Sensory What?!?!”

I responded, “The former OT never mentioned a sensory diet to me before… she mostly gave Sahara dittos and puzzles to complete coupled with jumping on a rebounder and balancing on a balance beam. In fact, when I told her I read somewhere that my OT should be able to help us with eating issues she just looked at me like a deer in head lights… that is when I started to question their ability to effectively treat Sahara. “

The evaluator said that she had seen other children with similar sensory issues as Sahara and that she thought she would highly benefit from this sensory diet. She said that we should start by teaching us how to do brushing. I responded, “Oh, well, the old OT did do that much. She gave me a little white surgical brush to use on Sahara when she felt agitated… I was instructed to stroke it on her at my own discretion and to try it on myself because it felt good.”

I didn’t understand the expression on the evaluator’s face; but it was clear something in my statement rubbed her wrong.

She continued to explain that ‘brushing’ was formally known as Deep Pressure/Porprioceptive Method Protocol for Sensory Defensiveness. I was then given a handout explaining this protocol and the instructions on how to do this which included the statement, “Only complete if you have been instructed by a trained therapist!”. It also included specific areas of the body not to use the brush on; “NEVER brush the face, chest, or stomach.”

Why was I never told this last fall when given the brush to use at home by the old OT?

As we discussed this further, I was informed that after carefully stimulating the specific deep pressure receptors of the skin you are suppose to do joint compressions (both in a set sequence) on the child to reset the nervous system. You end the session with heavy body work like carrying a backpack, sitting on a therapy ball, being hugged or anything else that stimulates the child proprioceptively and by stimulating the child orally like eating crunchy food, humming, or using a whistle. Each of these steps has a science behind it and it critical to the entire process.

“IF you rub the brush on the face, head or neck you could stimulate a seizure.”

WHAT!?!?!

Yep, and being that Sahara’s ECG showed epileptic frequencies, this was apparently a very dangerous thing to do without specific instruction. Oh, and by the way, I was informed that if you brush over the chest you could trigger heart problems and over the stomach could stimulate internal organ distress.

I was appalled that none of this was explained to me by the former OT. My only conclusion is that she does not qualify as the “instructed by a trained therapist.” Frankly, I wanted to march down there and rip her a new one, but the rational part of my essence stopped me. But, I am left with this innate pull to do something.

What do you think?

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Posted in autism, brushing, child's health, Children's health, language, occupational therapy, proactive health, sensory issues, sensory processing, speech therapy | No comments
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tripal h
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