Showing posts with label laughter. Show all posts
Showing posts with label laughter. Show all posts

Friday, October 29, 2010

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


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…

Wednesday, July 14, 2010

MAMAPALOOZA COLUMBUS IS BECOMING THE BUZZ OF THE CITY

Mamapalooza Columbus is a branch of Mamapalooza Inc., a mom-owned and operated mother advocacy organization founded by Joy Rose of New York City. Mamapalooza Columbus is connecting local women, mothers and families through music, expressive arts, activism and education for cultural, economic and social awareness. This past May marks the fourth anniversary of Mamapalooza Columbus which has not only created a buzz, but inspired a Mamapalooza Committee of Coordinators, a Back to School Event and even one of the Mamas being showcased on Mamapalooza TV and the Museum of Motherhood.




Columbus, Ohio September, 2010 – Mamapalooza Inc.'s ongoing mission is to create authentic, inspirational, large-scale experiences that will reach millions. Mamapalooza Columbus is energetically helping this mission come to fruition.

It was Mamapalooza Columbus 2010 that inspired four Mothers to unite for the empowerment of the women, mothers and families of Columbus, Ohio. Eileen Clary (HandyGirl!) is leading this committee and is credited with starting the action in Columbus as the Regional Coordinator since 2006. Vanessa Abel (Earth Flutter), Joanie Calem (Sing Along and Dance Along) and Susan Richardson (Exceptional Beyond Labels) have joined Eileen as a Committee of Coordinators and have already begun the planning stages for a Back to School event this fall.

This Committee of Coordinators is hoping more mothers in the city of Columbus will join in the fun with innovative activities that impact the women, mothers and families of Columbus. If you have a product or service that focuses on creativity, fun, health, wellness, financial education, expressive arts or if you’re a Mom-preneur, Mamapalooza Columbus wants you to buzz in too!

Some of the other folks involved with Mamapalooza Columbus 2010 were Randi Mockensturm, Tenara & Candice, 7th House Moon, Majestic Belly Dancing, Elliot 12Trees, Leslie Zak, Nancy Miller/Scentsy, Cynthia Minnich/Clearartview, On The Spot Mobile Massage & Bodywork, Columbus Acupuncture & Wellness Center, and Global Gallery. Thank YOU for making Mamapalooza Columbus 2010 the buzz of the city!

Alexis Chapman, Independent Contractor for M.O.M. (Museum of Motherhood), came out to personally support Mamapalooza Columbus 2010. M.O.M. is a sister organization to Mamapalooza Inc., devoted to educating the world about the contributions of mothers both historically and in contemporary culture. Alexis connected with the Columbus mothers and stayed to enjoy some of the Moms that were rocking the stage! Later she connected with one of the committee coordinators, Susan Richardson, and asked her to be a guest blogger on M.O.M. and to be interviewed on Mamapalooza TV.

Mamapalooza Columbus looks forward to showcasing more mothers and connecting them with Mamapalooza Inc., Museum of Motherhood, Mamapalooza TV and other venues to bring the much needed awareness about the impact of mothers on our community. As Mamapalooza Columbus gains momentum and builds a buzz in the city, they will be looking for reciprocal sponsors to become involved as well as the perfect spot to hold Mamapalooza Columbus 2011 in May. For additional information on Mamapalooza Columbus, contact Eileen Clary at e_motok@yahoo.com. You can also get more information on Mamapalooza Inc. at www.Mamapalooza.com.



Saturday, August 8, 2009

The Ohio State Fair...A Family Moment!

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!

Home

Wednesday, July 22, 2009

A Splash of Normalcy


We went swimming yesterday at a friend’s pool. I was feeling quite relieved to not have to worry about the teens at the city pool picking on the girls and was able to let me guard down. I sensed calmness within myself for the first time in a long time…

We splashed around and had a blast- I am sure none of us felt any worries in the pool yesterday! We played Marco-Polo and talked about the birds flying over head and the horses in the distance.

In order not to spoil their enjoyment, when I was done I sat on the deck patiently waiting for them to conclude their game. As I watched the girls play this intricate game they created, I was amazed at witnessing the normalcy of sisterhood; something I often intend for the both of them.

During this moment each would jump off the side of the deck into the cool pool, first Emily then Sahara. They would rush over to their horses (red noodles) and gallop away from the Water Monster that I am sure was real to them within the depths of their shared imagination; Laughter filled the country air and warmed my motherly heart.

I recognized for a brief moment that had there been onlookers they would not have been able to tell that autism was in their midst. In this moment we looked like a typical family having a typical moment in the pool. It was in this realization that I understood that Sahara was emerging from this label and Emily was emerging from loneliness of having her sibling experience autism.

Monday, July 20, 2009

Birthday Presence

There is nothing quite like having a birthday party with screaming kids and toxic food (known to others as pizza, pop, and cupcakes). But, I won’t go there today. You know, ranting about the food industry—but maybe later this week I’ll revisit that one...

For now, I’d like to focus on a very special birthday! It was Sahara’s 5th birthday yesterday.

Not many of my mom friends will understand this, but if you are a mom to a child on the spectrum you most likely will. In the past five years we have had many gifts exchanges; birthdays, Christmas, Easter, yes, even made up holidays just for the sake of mixing it up. But… there was always this solemn energy blanketing the festivities.

Emily usually unwrapped all of the presents and Sahara stared off in space or got up to play with the toys she found comfort in. You could hear the frustration in Emily’s voice as she would yell, "Sahara look. Sahara! S_A_H_A_R_A! Look it’s beautiful!" as her sister would just stay in her own world.

I always felt sadness in the depth of my heart that the well thought out gifts just laid there among the discarded wrappings. I would find myself begging God to help us find a way to bring her back to us. Maybe he was listening because somehow this year was different… This year Sahara participated!

She sat focused and actually ‘got’ what was happening around her. She delicately unwrapped each and every present (a total of six, which is alot)… with such awareness. You could see the anticipation in her eyes (something we have never witnessed in this child). Once the present was unwrapped she would give this faint smile of approval and pleasure (again, something we have never witnessed).

Emily sat their giggling while Sahara examined each and every gift before she moved onto the next. I quietly basked in the moment of witnessing both of my girls 'having a moment'. The rest of the day Sahara carried her new Tinkerbell and Cow doll around with her everywhere she went. She even carefully placed each in between us last night before she drifted off to sleep.

I think the greatest gift given on her birthday wasn’t in any of those pretty pink wrapped boxes, or laying between us as we co-slept, but rather in the essence of a young girl who joined us to celebrate her 5th birthday…the gift of presence.

Friday, July 17, 2009

Dinner and a Show

We had an incredible week! We witnessed improvements in just about everything… from social play, eye contact, and speech to eating new foods. And yes, let’s not forget her expression of humor.

Sahara has always had a great sense of humor. Even when she was in the womb the midwives heard two distinct heart beats. My husband I heard them too…. We all sat their stupefied that we just might me carrying twins. However, after the ultrasound concluded there was only one baby in there we laughed for weeks that this child was going to be the comedian of the family.

Last night proved us right….

We were delighted when she actually joined us for dinner and ate, but the best was yet to come. When she finished eating she looked directly into my eyes and let out the biggest belch I have ever heard come out of a little girl. I know as mothers we are supposed to contain ourselves when redirecting our children, but I admit I snickered before saying, "Say excuse me."

"Oopsey!"

Okay, maybe I was not the mother of the year last night… when her attempt to say ‘excuse me’ came out ‘oopsey’ I laughed out loud as Daddy gave me the quick glance over his glasses that I was not handling this appropriately. (He is much better at going behind the closed door to laugh in these situations.)

Sahara clearly recognized that she has not only had me on the verge of tears, but her sister laughing out loud and Daddy sneering at Mommy as well. So… she takes another drink of water and pounds on her chest and yep…

"BBBUUURRRPPP!!! Oopsey!"

This time I snorted and her sister about fell off her chair from the hilarity of the situation. Daddy turned to her and said, "Sahara, this is not funny. We do not burp at the dinner table. Now, say excuse me."

"BBBBBUUUURRRRPPPP!!!! Oopsey, Daddy!"

I don’t know how he kept it together to say, "Sahara…"

"BBBBBUUUURRRRPPPP!!!! Oopsey!"

She wouldn’t stop and I couldn’t stop laughing. I had tears rolling down my checks. I suppose in hindsight that maybe they weren’t just tears of laughter… you know the ones that come when you are laughing so hard that you can’t stop. But, maybe tears of joy that this wonderful child was interacting with us and able to read the cues of everyone around her.

It is exhilliarating to see the fog lifting and witness the expression of life coming alive before your very own eyes!

(...and frankly, she was funny!)