Halloween Nights

Halloween is around the corner…. In fact just 10 days away.

It is a super-charged time for me. Firstly, it brings up significant memories for me. Secondly, this Halloween will be the 3^rd year anniversary of our daughter’s formal autism diagnosis… A day our life changed forever!

However, on that Halloween in 2008, I came home and I couldn't breathe…. I was in a stupor for 3 days. Ironically, in hindsight it reminds me of how I felt in the hard plastic masks we couldn’t breathe in as a child; they got unbearably hot as the night went on… which was odd since we lived on the water and the wind chill was certainly cold under the plastic princess dress that didn’t let you move properly and was sure to tear before we made it down even the first street in Jamestown.

No, I didn’t grow up in Virginia…. I don’t know how the community got the nick name other than there was a street close to our Catholic Church called James Street. And the little neighborhood nestled between Lake Erie, the park and the Catholic Church was known as Jamestown; everyone knew everyone back then. All the kids attended the K-12 school and all their parents had gone to school together and their parents and the parents before them.

(This was a nice part of growing up in a small Ohio town.)

On this night, all the cars from the families that lived on the outskirts would roll in and hundreds of kids would pave up and down the street while their parents were nestled warmly in the car waving to the elderly folks on the doorstep. House to house… until the last house of the night… Grandma’s House! That was the best stop, not really because it was Grandma (although this is one of my fondest memories of her)… but she was sure to give us the best treat of the night!!

We would pile back into the car and Mom would remind us not to eat ANY of the candy in our pillow case (our make shift bag) except the one from Grandma; of course because that would be the safest piece of candy in the bag. I am not sure what was in the news those years… I was little, but even though everyone knew everyone, we were not allowed to eat one piece until our parents checked the loot to make sure it was safe to consume… with no pins or tears in the wrapping.

On the way home, Dad would drive around the horn (the quiet peninsula on Lake Erie; another nickname I am not sure the history of) with the window cracked just enough to flick his cigarette ashes as we excitedly pestered our Mom until she said, “Okay, now you can eat your Hershey Bar!” Grandma’s Candy Bar was surely THE best piece of candy in the bag!!

Other memories float in the recess of my mind like the year my Brother made a homemade costume for the Fire Station Costume Contest… a huge pumpkin made out of mesh wire and newspaper with glue water painted bright orange. Not only did he win, but he fell walking down Jamestown and rolled down the street… Hysterical even to an 8 year old!

Or the year when we were much older and my siblings took me to my first Haunted House…. Which was pure terror even for a 16 year old. The ‘werewolf’ (not the warm and sunny kind that Jacob is in New Moon) picked up on my fear and ran with it. He wouldn’t leave me alone as we waited over an hour in line to go through… I was so scared I PICKED MY BROTHER UP and barricaded myself between him and a large tree. Mind you I was a tiny adolescent… could blow away in the wind; Fear and Adrenaline was my strength!! On the way home we laughed so hard we cried.

Halloween was a fun holiday!! As I moved grew older I still came home during my college years, dressed up and went Trick or Treating with my niece in Jamestown…

My husband and I had our first date on Oct. 27, 1988! We were supposed to go to a HauntedHouse, but ended up at

Halloween 4: The Return of Michael Myers.

Every year since, we watch a scary movie in honor of our first date. On our first Halloween Married, we went to a costume party as a Biker and his Bitch... we had a blast when no one recognized my new hubby! We went home the next day to celebrate what unknown to us would be my Father's last birthday. My Dad about flipped out when she saw my fake tatto... he thought it was real!! Of course, I milked the situation as best as I could until I thought he was going to kill me.... not really.

As we became parents ourselves, my love for Halloween continued. I loved seeing my little ones dressed up as little cows and ladybugs!! Of course they never ate the candy; I would take it in to my office and give it to my clients. On my oldest daughter’s fifth Halloween she handmade her costume…. Tinker Bell!!! She picked out the fabric, cut it, hand stitched it… for weeks she worked diligently on it. Taking pride and care in each stitch…

On that Beggar’s Night, we went Trick or Treating with a group of other parents and their kids. They were on a mission to get as much candy as possible, running from house to house. One mother had our whole route planned out to hit the most houses… as if she couldn’t afford to buy her own kid a Twix (said with a little contempt in my voice)! BUT, Emily didn’t go up to half the houses that night!! She danced n twirled like a real Pixie, while telling everyone who would listen about how she had made her own Tinker Bell Costume. She rolled down hills of leaves and was happy being removed from the drama around her.

Every year since, we have hand made our costumes… with a family theme:

Harry Potter, Toy Story, Fairy Tales, Egyptians, Puppies and Dog Catchers, And this year… Ancients!!

ANCEINTS… people or concepts of people that are from our past that still influence us today (Emily’s idea)… Ancestors that are from many many generations before us still bringing us enlightenment! Over the years, Halloween has become as significant to her as to me. I am sure on Nov. 1 she will be asking, “So, what do you want to be next year?”

On the Middle School bus yesterday, the kids were boasting about smashing pumpkins and taking the whole bowl of candy left on porches… my eldest daughter came home expressing how stunned she was. Emily said she couldn’t believe the disrespect and immaturity the kids were bragging about. When she called them on it, they gave her a hard time and asked, “Well, what do you do for fun then on Halloween?”

She, very matter of fact, told them she walked around with her family… They balked at her, but she continued to tell them about our family themes, and how her sister was diagnosed with Autism on Halloween 3 years ago. So for her little sister to design her own costume this year was a big deal; and supporting her sister was more important than the junk they were stealing.

She told me some of the kids got quiet, but the bully just went on with her rhetoric, but she didn’t mind. She said that she understands most families are not as close as we are… and she found that to be sad. She is very insightful… perhaps a true Ancient resides within her!!

This morning as I laid out our material and the intricate plans Emily has sketched for us for the construction of these costumes… I am reminded how Halloween has signified so many moments in my life! It isn’t about the loot and the monsters or the devil as some religious persons believe. It is about clean fun, family and creating memories with our children.

…This year will be no different. We will spend the next 10 days diligently working on our costumes for a night of family fun complete with Trick or Treating, Pumpkin Carving, Hot Homemade Chili waiting to warm us up afterwards…. AND FAMILY MILESTONES!!

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Autism Awareness Day: In a nutshell

I am a proud mother of 2 daughters; one who is exceptional beyond this label, and the other, a sibling who is just as spectacular. It took us 4 years to get 'professionals' to listen to us bc of gender issues. We are addressing Autism naturally without ABA nor meds... want to know more about autism or how it affects females.... ask me any day not just on this hallmark day!! I have met the most diverse and supportive folks on this journey... to you I am eternally grateful. My husband is supports me and the girls unconditionally on this journey. Autism has strengthened our relationship. We have learned, over tears and triumphs, that Autism isn't the end of dreams, but a beginning of new ones... I have high expectations for both of my children and am busting through the limitations certain 'professionals' put on them. Yes, having autism in our lives sucks at times, but it also is extraordinary. My daughter is incredible and has taught us more than you can imagine. Thank you for sharing this journey with my family.

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Sahara's Voice

Dear Friends,

My daughter, Sahara, is a pre-verbal six year old kindergartener… she has delays across the board developmentally and academically. Our family is still recovering from a 7 month unemployment situation caused by an agency wide down-sizing last year. As a result we, like many autism families, are unable to afford an iPad for Sahara. I am writing you to let you know how disheartened I am to learn that not all professionals see the obvious benefits of an iPad for autistic kids and what I want to do about it.

Let me start by telling you our story: I contacted our insurance company in early December to see if they would fund this much needed tool for her. I was pleasantly surprised to learn that all we needed to do was present documentation from her doctor and speech therapist stating that she would benefit from this assistive devise. If we could provide this, then they would put it before a panel that would make the ultimate decision… not a definite yes, but a better answer than I expected.

I inquired to our speech therapist about writing a letter on Sahara’s behalf. She was pleasant about it and said she would do so over the holidays. Well, the holidays came and went and no letter arrived. Finally, 7 weeks later I called to ask where the letter was. I was stunned to get the response that, “I can’t … it is unethical.” She continued to tell me that there was no research or proof that an autistic child would benefit from such a devise. (I am pretty sure she is living in the Stone Age!)

I am even more certain this response is political and follows a money trail. She was initially more than happy to comply during our first conversation and now was saying it would be unethical to recommend an iPad for an autistic child with gross language , communication , social and academic delays? To further illustrate my political theory, let me share that she also refused to work with another piece of equipment we have immediate access to. I informed her that I have a friend willing to GIVE me a Tech-Speak and she refused to work with Sahara with this equipment too… well, that is unless we completed an assistive technology evaluation through her agency. She then proceeded to tell me that this is a “very expensive” evaluation which “most likely will not be covered by insurance.”

Now, I understand that this $2000 Tech-Speak will not have all of the apps the iPad offers. In fact, I am pretty sure its capabilities are inferior by far. From what I understand the iPad does have a multitude of applications that can help aid in language & communication, academics, social stories, scheduling and so much more. I know from watching Sahara on the computer, that she is technology savy… must take after her father!! In fact, she can navigate through files on the computer almost better than I.

So, what do I do?

To make a long story short, I have decided to hold a fund-raiser to raise funds for the iPad. I hope that I can raise enough money to not only fund the iPad and applications for Sahara, but for other autism families with economic hardships. I am wondering, does any know if Apple ever offer discounts in such situations? So many families are struggling like ours… 1 in 91 kids today have autism… how can we get this equipment into the hands of those of us who do not have access to extra funds for this essential technology?

If you would like to donate to this fundraiser, you can do so HERE or you can send a secure “gift payment” directly to us through paypal via ladysusan@sbcglobal.net.

If you would like to apply to win a iPad through this this fundraiser… we are creating an application for you to do so. Once we raise enough money, we will post how many we have available and how you can apply.

We are raising funds until April 15^th… in hopes that we can have the iPads by May 1st.

Thank you,

Susan, Jim, Emily and Sahara

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Autisms Sneak Attack on My Heart

It has been a rough week in the world of autism at the Richardson’s…

~ PICA reared its ugly head again… I do not comprehend how my daughter can eat foam off of the underside of the mini-trampoline, yet refuse to eat the wholesome yummy food I loving create for the family. (Although, I know this isn’t a logical quest meant to understand… Pica isn’t rational.) But, not only foam; toilet paper, foil, string… yak!! The thought makes me cringe. I try to focus in those moments that this is not a conscious decision… it is part of the autism.

~ She is still obsessed with fire. We have thrown away every candle in the house… but it is not like we can just curb the gas stove. I have looked at locks and nothing seems Sahara-proof. I wonder what the fascination is with the fire. …The cause and effect? …The beautiful flicker? …The control? Perhaps all of it… Regardless, the lingering smell in the house is haunting!!! The innocent, “nothinnnnng” is undeniably infuriating… The fear is grasping!! I acknowledge I may never sleep again…

~ With young girls in the house, I have an open door bathroom policy. I view it as a natural way to educate them about proper feminine hygiene and the like. Well… until I found Sahara this week… with a tampon and trying to insert it up her rear-end. (Did I state that gently enough?) Realizing she thinks there are only 2 exits down there; how do you explain the 3^rd to an autistic child with communication delays? Needless to say the tampons have been locked down with the other random items of mischief. But, I am still left standing… wondering… pondering… how do I teach her about the birds n the bees and body changes?

~ Which leads us to the next event of the week… usually when Sahara is too quiet… we worry!! When I went up stairs to check on her, the bathroom door slammed. Once I got in the room, I was horrified to find she had climbed the linen closet (top shelf) to get down a razor… well, it could have been worse. (I remember my niece’s first blood ridden trial shave vividly!) But, luckily Sahara was just left with razor burned arm pits (which really is bad enough)!! So, yes, now the razors are residing with the tampons under lock and key.

~ The ultimate meltdown this week was exacerbated by tears… yup, her own tears compounded her meltdown. She has major sensory issues around getting wet… and her tears during her melt down flew her into a whirlwind of emotions and physical pain. Moments like these break my heart. I try my best to stay composed and support her patiently… but the helpless feelings can even swallow the calmest person.

Speaking of broken hearts…. Its Valentine’s Day weekend.

We typically do not celebrate Valentine’s Day… in fact; I have dubbed it a “Hallmark Day”. You can read HERE how last year I was pleased to get nothing for Valentine’s Day… as my hubby shows me daily in small intimate moments nestled between motherhood & autism how much he loves me.

However, Friday night we had a minor rare spat... when these happen, they usually happen just before bedtime when we are both exhausted from the emotional and physical adventures of the day. Well, that evening was no different… I happened to have a menstrual headache and recovering from a fever, plus I knew I had to be up at 5 AM to go to an important meeting… it was midnight and the kids were still up…

Sahara was running up and down the hall scripting! She then said she was hungry and ran downstairs. Well, because of the fire hazard, she is not allowed in the kitchen by herself… but I didn’t have the strength to get up… I just wanted to melt into my bed. Emily yelled to her father in the other room, “Daaaaad, she’s going downstairs.” He slammed the wall with his palm; it shocked me… which caused me to verbally react, “Did you really just smack the wall? Don’t do that!” I heard him huff only more… we are both exhausted… ready to collapse, but we know we can’t until Sahara is sound asleep…. I snap at him to forget it… he needs to remove himself and I will take care of it… Emily is upset; Sahara is stimming even more… I am fighting tears of anger back… anger at what… not him, not her… but just that our lives aren’t supposed to be like this… I am pissed that I don’t have my white fucking picket fence!! I want to scream… “Where’s my fucking fence!?!?!”

Soon after this, I hear Emily and Dad’s heavy rhythmic breathing... they are asleep. Sahara stays in bed for the rest of the night, but it takes another hour or so to get her settle into sleep. All is still… the alarm is going to go off in 4 hours… and I am laying there listening to the silence of the night… talking with God in the moonlight about this stupid fence in my illogical fantasies.

Later the next morning… my arm hurts… my left arm. I am walking through Walmart… trying to breathe in my nose, out my mouth… chest pains too… breathe in, breath out. I use cognitive thoughts to get me through the store… but inside I am really thinking about my Mom what has vascular disease (she had her leg amputated as a result last spring and had numerous heart attacks over the previous year… but I know it can’t be my heart because soon after her amputation, I went to our family doctor and had a complete exam to rule out diabetes and heart disease… he said I was healthy. His only advice… lose weight. What about the chest pains I get, “Susan, you’ve had them for 5 years.. it is most likely anxiety.” I actually try to tell him I have no stress… have to laugh… did you read the first part of this blog & I try to tell the doctor I have no stress.)

As the day went on, I was sure I was having a heart attack or stroke… but kept saying, ‘well it has been 3 hours, 6 hours, 8 hours, 12 hours… surely if I was having one it would have happened already’. I go take a shower to loosen up my muscles… it works until I step out and see Sahara sitting on the floor surrounded by my raw organic almonds… one in which she is attempting to put up her rectum. Hubby gives her a disgusted look and I call him on it, he looks at me and for the first time ever utters the words… “I HATE AUTISM!!” This is a paramount moment…

Part of me is relieved… I am not the only one. How liberating for him to say it. How healing for us to be in this raw moment together… how therapeutic to acknowledge that it isn’t the child we are frustrated and exhausted from… but autism.

Emily is oblivious to my heavy heart of the day and is planning out a perfect Valentine’s Dance… she has planned out the food, drinks, dancing and presents. It comes together perfectly… Sahara opens her own presents and is excited about them. Hubby dresses up in a suit and tie and sweeps Emily off her feet in a waltz-like dance… the smile of her face… priceless… I am certain it is a moment she will embed in her memory forever… a perfect family moment. A perfect family!!

When I lay down, I realize the pain in my arm all day was from Sahara’s head when she sleeps… I know this because when she laid there again to nuzzle… I felt the muscle screech in pain. I lay there thinking about how silly I was all day thinking I was having a heart attack, when in fact I was having an attack of the heart… My heart yearns for moments of normalcy for my children, for my husband, and selfishly for myself.

I laid there wondering how many other mothers feel like I do… recognizing the inherent beauty in her children and family, and yet raw emotion sneaks in intermittently to get the best of her.

…Today I feel better, more aware of my limitations, my strengths, my hopes and dreams. Today I feel ready to create a new picket fence… but this one isn’t all white and rigid… perhaps it is colored appropriately with all of the colors of the spectrum and full of groves & curves.

… And more importantly, today I feel ready to empower other mothers who may not have the inner-resources I have to pull myself out of the funk so easily.

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Share the Gift of Simplicity and Ease With Those You Love...

Black Friday seems to contradict what ‘The Holiday Season’ is all about.

So, today I sit cozy and warm with my children while sipping hot tea and reflecting...

Over the past 6 years, I have learned to never take anything for granted… and that includes Christmas morning.

When you have a child who cannot comprehend why you allow a strange man in a costume come into your home in the middle of the night while you sleep OR have another child who is so catatonic that she cannot even open her own gifts… you have no choice but to recreate what the Holidays mean to you.

((For us, Commercialization and Idealization is far from the equation.))

Many of my own expectations have been calmed and put into perspective. I have surrendered “The Beaver Cleaver” Holiday to old re-runs… instead we have learned to make do with what we have and appreciate the little things. The most important thing (and this may seem cliche but it is true) is that we are together and offer unconditional love to one another.

I cringe when I think of the children exposed to too much commercialization at the holiday... and what message that sends to their expectations and sense of self. So, instead of Christmas Barbies and Gameboys... we construct homemade gifts. And instead of Reindeer and Santa cookies (loaded with artificial dyes and colors), we make a birthday cake and sing "Happy Birthday" to Jesus on Christmas Day.

I wish such simplicity to all families. To be in the moment of togetherness and pure unadulterated joy!! As we enter the Holiday Season, I suggest that you pause and allow ease into your life!! This alone could be the greatest gift you give to your child or loved ones... a more balanced you!!

Having said all of that, I know that my readers may still like a good deal for Black Friday... and the business woman in me will honor each of you too!! So, I am offering discounted gift certificates between now and Dec. 31 for my Energy / Meditation Work for Adults and Children. What better gift to give than something that will soothe the body, mind and spirit!

Adults Sessions ~ 60 minutes for $30 (50% Savings!)

Children Sessions ~ 30 Minutes for $15 (50% Savings!)

Distance Reiki Sessions ~ $5 (A Crazy Low Price for all of my friends who tell me all of the time, 'I wish you were in my town, country or village') J

All you have to do is make a payment via Pay Pal referencing my personal email account: ladysusan@sbcglobal.net

Then I will contact you via email to schedule your session and/or to confirm who is receiving the gift certificate and where to mail it… Yes, this is a great gift to give to your loved ones and friends…Energy based work promotes relaxation and reduces stress allowing the body’s innate intelligence to express itself and heal from the inside out. Doesn't that sound better than the re-gifted item that no one wants?

Who do you know that could benefit from an hour of “ME-time”? Or has a child that could benefit from the energy balancing?

Happy Holidays to you and yours!! May you each find simplicity in this season!!

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An Autism Christmas Poem: A Walk In Our Shoes

"Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
Asleep early for Christmas?
...an unlikely path

The children were finally
All nestled in bed
When visions of Christmas
Ran through my OWN head

Did I get the right gift?
The right color and style?
Would there be a blank stare
Or even, maybe, a smile?

Friends & family come
But they don't understand
The pleasure she gets
Just from bending her hands.

"Just make her stop it," some say
"Just tell her "no",
“You must learn to be tough.."
On and on they go...

We smile and nod
Because we know deep inside
The debate is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles, triumphs
achievements and regressions.

But what some don't know
And what some don't see
Is the joy that we feel
Over simplicity.

She said "hello"!
She ate something green!
She looked me in my eyes
She did not cause a scene!

She peed on the potty!
Who cares if she's ten;
She stopped saying the same thing
Again and again!"

Some others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With envy, with wonder,
Or even distaste,

What we want them to know
What's important to see
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try so hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in our shoes
And I'll assure you…

That even 10 minutes
Into the walk
You'll look at us all
With respect, even shock.

You will realize
What it is we go through
And the next time you see us
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years I learned to
When the tables were turned.

~Christine Muczyk

(A Mom from the support group I lead sent this to me... powerful!!)

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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…

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One of Those Days... WTF?!?!?

So it was a rough weekend... PMS and all!!

The firework show was a bust and stimming was at an all time high in our corner of the world. We didn't make it to bed until 11:30 last night, then the new kitten woke the girls and me up at 5:00am!! It was bound to be a rough day.

The music therapist cancelled at the last minute... but, I understood... her hubby was home for the holiday and she wanted to spend the morning with him and her son. With the continued stimming and agitation this morning I am certain not much would have been accomplished anyways. So I was happy to reschedule for tomorrow morning.

All morning I reminded Sahara of the agenda of the morning that seemed to last forever... Relax, Get dressed, Brush teeth, OT, Speech, Lunch... If you don't know much about autism, routine is important to many of these kids (and adults).

So, when we pulled up to the Children's Close to home and the parking lot seemed much too empty on a Monday morning... I got a little nervous. I told Sahara to wait. Being parked right in front of the main door I was able to quickly jump out of the jeep to check the front door. It was open... whew!!

I nodded at Sahara; she took off her seat belt as I grabbed my laptop and book (Eclipse) from the passenger front seat. Sahara must have have been anticipating OT as much as I... instead of running down the sidewalk she walked right into the building and sat down in the empty lobby. I said to the subbing receptionist, "Sahara is here to see [J] for OT, then [C] for Speech."

I wasn't prepared for the response, "Oh, they aren't here today."

"What!?!?"

"I am sorry, the lab and x-rays are only seeing people today," she sheepishly replied.

"I specifically asked [C] and [J] 2 weeks ago if we had therapy today and they both said 'yes'!!"

Avoiding all eye contact she said, "I am sorry you will have to talk to them about that."

I expressed that I was upset because I not only asked one therapist, but two!! if we had therapy today and was told "yes" we did. I continued that I thought this was inappropriate for therapists who supposedly specialize in autism... certainly they should know the importance of routine for these kids on the spectrum. I didn't get a response to that...

The lobby was eerily quiet... I approach Sahara and try my best to explain why we had to leave right away. The look in her eyes said it all... no comprehension!! Instantly I am pissed, "I expect more professionalism than this from Children's Hospital!!," I snap.

I know it was not this green receptionist's fault... but I was so upset. My child was pulling away from my hand and running through the lobby clearly not comprehending why her mean mother was trying to force her to leave when we had just arrived here.

Maybe the sting was worse because we so desperately needed the platform swing today, maybe because I was looking forward to consulting with the SLP about creating a picture schedule for the summer or maybe, just maybe, because in the recess of my mind I remembered that last sting I got from the SLP.

She was explaining to me how she is going to work in the Down Syndrome Clinic, "You don't know what it is like to work with autistic children all day... "

I must not have held a good poker face because she failed miserably at saving face, "I mean, you get to go home after your appointment, I have to stay here all day, day after day. Autistic kids are hard to work with"

WTF?!?!

Where did she think I went after our appointment???? I am just really annoyed with therapists, doctors and other so-called professionals who haven't a clue what a parent of a child diagnosed with autism goes through. I can garuntee you that their degrees and experience have little comparison to the expertise us mothers and fathers on the front line have. How dare she imply that her JOB was more difficult.

I wasn't surprised when I got home to find a voice mail from the SLP on my answering machine. However, she stated that she had arrived to work and was told to go home because it is a holiday; they won't pay overtime. This doesn't add up to me as I know that she works 12 hour shifts on Mondays, so if she had arrived to work it would have been at 7:00 am not 10:30... a half hour prior to our appointment and a half hour after I reamed the receptionist.

So much for my hubby's relaxing day off with the family. After I vented, we have spent most of the day refereeing between the girls and consoling Sahara in her many many melt downs. In addition, Emily had a low grade fever and was grumpy; I was PMSing; and my dear hubby was ready to crawl under a rock.

Here's to a better day tomorrow...

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Fireworks, Ignorance and Stimming

I was all prepared to embrace our freedom and have a great time with the family. We were going to arrive a bit early, find a remote parking lot and watch the fireworks from a distance to avoid the noise, smell, people, traffic jams... if you or your loved one has autism you know why; sensory sensitivities are debilitating!!

Okay, so plans didn't go as expected... we did arrive early but the traffic was insane. Sahara kept signing for 'sparklers' and I tried to get her to understand that fireworks are like sparklers only in the sky. People were blowing their horns, playing loud music and one even yelled 'fucker' at me when I hesitated to go forward because he was looking down AND heading straight at me... I know it makes no sense to me either. My hubby told me to shake it off... I tried, but his words stung!

Of course I was already feeling on edge... we had had pizza for dinner a couple of hours earlier and prior to that Emily and I shared nachos and pop corn at the theater. I am sure my blood sugar levels were soaring; I was short and snippy... fully aware of it, but I couldn't stop. It is so frustrating to have emotions that you have no control over... really, really frustrating.

Anyways, back to the fireworks... we found a parking lot right off main street which only had 2 cars with a perfect view towards the designated show. It was close enough to have a good view and far enough away to zoom away if needed. We backed in next to one of the cars there and opened the back to my jeep. The kids forced themselves to get comfy in the blankets. Ahhh!!

Being on Main Street we were privy to the late traffic jammers... people can be so rude when the are stressed and overwhelmed. I am certain they lost sight of the whole reason we were there in the first place... to celebrate our Freedom!! But, I had too... Freedom was the farthest thing from my mind.

A few kids started throwing snaps at each other's feet; it would have been cute if it didn't make Emily wish she had brought our's. Then they pulled out the sparklers; now Sahara was even more insistent in her signing, 'sparklers?' I was almost relieved when their supply ran out, until they started to set off smoke bombs and yep, we were down wind!!

Finally, the kids settle down and in whips a blue van right next to ours. They are blaring base thumping so loud my inner core thumped with it. Sahara puts her hands on her ears as I give them a subtle look. All the kids in the van are banging their heads to this noise along with the adults. I am thinking hard how to approach them to let them know that our child has a disability that causes her to be sensitive to certain sounds... I am at a loss and certain I could find no such words. And even if I thought I had, they didn't look like the type of people to offer me compassionate understanding.

In the mean time Sahara starts to hum... I am sure she is trying to block out the base thumping. Five young kids jump out of the van and I hear them using words like "Jesus Christ" "Fuck" and "Retard"... my blood is boiling!! I try not to let it show, but I am sure everyone knows that I am pissed... especially my own family. I am certain I am ruining their good time.

I start to deep breath and ask for patience.

Suddenly a red van pulls infront of our jeep... blocking the exit path I carefully orchestrated. I am okay though.... I quickly decide if it gets much worse (and trust me it did) I could just back our jeep up onto main street and leave. My sense of relief is popped as the 7 people jump out of their van and plop a cooler full of beer and blanket five feet from the back of the jeep... they pinned us in completely!!

Not only were they blocking our view to the much anticipated (now almost dreaded) fireworks, they lit cigarettes and cracked opened beer cans... all down wind. I feel completely assulted.... thumping base on one side of me and cigarette smoke in my face... I look at my family and yearn to protect them. I can only imagine with their heightened sensitivities how they must be feeling.

Both girls found their way on the ground to play in the dirt and gravel... I presume they were seeking a sensory activity to soothe their assaulted systems... playing in dirt is always gratifying to me. It feels so calm to have the smooth grains go between my fingers and palms. They looked filthy and it made me chuckle... leave it to my daughters to find their way to the Earth to ground themselves from their environment.

When Sahara is done she is more agitated than before because now she is dirty and wants water and a towel to clean herself up, "Why didn't I better prepare?!?!" She starts to orally stim and of course our assailants of the night begin to snap looks at us... they are oblivious that it was their rude disregard that started the vocalizations. Of course they are too self absorbed to notice andmost likely ignorant of autism to comprehend the discomfort my child is experiencing. In fact, I am certain that the first van load turned up the base intentionally when the noted my obvious disapproval.

As the loud show begins Sahara's face lights up! Once again, I am feeling tender about a moment that demonstrates how far we have come... prior to this year, she had never taken note to the beautiful shimmering light in the sky... she is breathless and utters, "Wow, it's beautiful!" I well up with emotion... I note to myself that if only everyone could see this through her virgin eyes that they would experience the true meaning of Independence Day. Liberty is within her as autism loosens it's clutches.

Emily is speechless and rolls over onto her tummy. I am certain she is categorizing each design so she can recreate them in her journal over the week. My heart aches at the pain she has endured in the shadow of autism... she takes everything on. I am relieved at the moment of loosing herself into the show. I presume this is why I try to do this every year...

I want her (both of them) to have a chance at normalcy as much as possible. I presume that the notion of normalcy is over-rated and romanticized... but I try. Sometimes I think that it is the siblings that have a more difficult time. They carry burdens with them... well, at least my girl does. She worries about her sister constantly and always puts her first, but she struggles with quiet resentment too. I try my best to support her, but it is hard!

These are the things that wake up my demons inside. I see the rugrats in the van parked next to us... dis-shelved and unruly; talking worse than sailors as the parents throw out threats of physical harm and the kids retort with disrespect. I think about how hard I try to be mindful about everything I do, and how guilty I feel for being moody (probably from the sugar levels I am learning) and I become infuriated at the obvious injustice.

Then I remember, better me than them. I can handle this... I know I can!! We will get through this moment of torture just like others and be stronger and more empowered than the moment before.

The fireworks are loud even at a distance and we are blocked in; Sahara begins to run in circles while humming. I don't even try to intervene... I know this is the only way she has to soothe herself in this moment.

On the way home Sahara was stimming with intensity; rocking, hand flapping and humming. I knew she was trying to calm herself down, but nonetheless I felt helpless. I wanted to make her pain and discomfort subside. However, I know when I am upset I am about useless to her... well, that probably isn't true, but it certainly feels like it. I know I need to tend to my needs so I can be better present for both of my kids... and let's not forget for my husband as well.

I am not sure we will do this again next year or ever... As for today we have less stimming, but it is still present. I am sure her system is trying to re-regulate. I hope someday that others in our global community become aware of the sensitivities and impact they have on this generation of youth.

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Alterna Mom's Wi-Active Challenge: The Why and Day 1-3

BECOME MORE PROACTIVE IN YOUR PHYSICAL, EMOTIONAL, SPIRITUAL, AND FINANCIAL HEALTH AND THAT OF YOUR CHILDREN!

That is my Alterna-Mom motto! I have to humbly say that if Alterna-Mom's Blog is about promoting health and well-being on all levels of our existence, then she needs to heed her own advise.

I have insisted that my habitual tiredness and dark circles are from sleepless nights of worry about my children and obsessing over the details I orchestrate in my mind's eye on how to move forward on helping my daughter diagnosed with autism to become more functional, safe and communicative while advocating for her rights, needs and education. (Not to mention the advocacy I do for my other child as well... raising kids mindfully takes time, energy and planning.) However, I recently took my own blood sugar levels and the results scared me. I swayed between a consistent 123 and 236 during a week of testing.

My Mom was diagnosed with diabetes at about the same age I am now, 40. She controlled it with diet at first, then the pill and finally insulin shots. This past Spring the diabetes finally claimed her leg after an intense year of surgeries, heart attacks and gangrene. I knew at this precise moment in time that I needed to become more proactive in my own health, but somehow we use life as a convenient excuse to resume our old habits.

I have understood that I was already predisposed to diabetes not only via paternal and maternal history, but through evidence of gestational diabetes with both of my pregnancies. However, I believe that the power of our minds, meditation and prayer can trump genetics. Maybe I am not so lucky or maybe I have caught it early enough... fate is always yet to be determined.

I am not one to run to the doctor, yet I know that there is a time and place like I explained HERE. I also am keenly aware that intention alone cannot alter reality. We must be proactive and make healthy decisions especially if we are going to stay around to see our children grow and spoil our grandchildren. I have always insisted that we must take care of ourselves before we take care of our children and loved ones. In order to be more present for them we must tend to our needs.

Perhaps the culmination of the sugar levels, my mom's fate and my recent kidney stone episode has pushed me just enough to heed my own advise. So, I bought primarily fresh fruits and vegetables at my bi-weekly shopping trip Friday night, then came home and pulled out the Wi-Active.

I decided to take the 30 day challenge... easy enough right? Somehow committing to a challenge seemed easier than randomly using this devise. So, I set parameters including my weight... ouch!! I weigh what I weighed when I was 9 months pregnant with my oldest child. That alone should have prompted me to do this a long time ago.

HOLY MOLY.... Can running in place for 90 seconds really make me that out of breath... I can't help but wonder if that is still evidence of my smoking days. So, I use this as a teachable moment, "Girls, see what happens when you smoke?"

My eldest replies, "You don't smoke Mom!"

"Well, thanks to you (I quit with my first pregnancy) I don't, but I am certain that that is why I am so winded."

She says, "Really !?!?," I am not sure if her response is from the disbelief that her anti-smoking mother actually smoked once upon a time or if she is amazed at the honesty that I unconditionally offer them.

I have decided to document here my progress. Although this is a public venue, I think that it 1) will keep me honest and encourage me to continue through the first 30 days and 2) maybe it will motivate someone else to become more proactive in their health...

Day 1 It would have been easy to quit; it kicked my butt!! I was panting and resting in between sets. But my daughters were watching and encouraging me to finish... Did I ever tell you that my kids rock!?!

My muscles hurt... I wanted to sit down and throw in the towel... but I pushed through the whole workout. I have to admit, I was proud of myself... it would have been easier to listen to the million reasons why I shouldn't do this... How can I find the time? How can I find the energy? How much will it cost? Who will watch the kids? I need to save my energy for the kids. I need to get this done or that finished...

I burned 121 calories! That made me walk away from the donut later that day... all of that work equated to 1/3 of the donut!! Wow, that really put things into perspective.

Day 2 It was a more intense workout (and longer), but I was amazed at how much easier the track was in just 24 hours... really!! I still huffed and puffed, but I had better focus and was better able to push through the pain. That in and of itself amazed me.

I burned 151 calories yesterday... again, I was reminded of how much effort it takes to burn off those in between empty-caloried snacks.

It is Day 3 and I am grateful it is the day to rest... my legs were wobbly coming downstairs this morning. However, does a mother really have any days to rest? It is interesting on the Wi-Active it asks you to log your other activities with time and intensity. That includes playing with the kids, yard work, house work, walking etc. I presume I am not doing too bad already because I really do do a lot... maybe it is the cardio I am missing though.

There is no challenge today, so we have planned to start prepping the yard-sale stuff.... that is a work out! But I think later we will do some yoga - my muscles feel like they could use some good stretching.

I think this is good for me... on many levels. Plus, Emily has decided to partake in the challenge... so we are doing this together. Sahara was annoyed the first day... she thought we were going to play golf or fishing (her favorite Wi games), but yesterday she did a couple of the exercises with us... too cute... this may be a fun summer activity for the 3 of us.

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