Serendipity and A Random Driveway

Do you believe in serendipity?

I do...

Yesterday I was turning around in a random driveway, and noticed an autism bumper sticker on the tattered car in the driveway. When I looked up, I saw an anxious little face in the bay window....

I have been wondering since if I was supposed to stop and knock on their door... but what do you say, "Um, I know strangers aren't suppose to knock on your door.... and I am probably cause a meltdown with your child, but I was turning around in your driveway and.... I think we are supposed to meet...."

I believe this is how the Universe works, but the mother would have called the cops on me ~ LOL!!!

However, I dully noted the house, maybe I should go back. What do you think? Heck, it was probably one of my autism friends on here.

Why I Blog

Just feeling the need today to re-iterate why I blog...

My blog is a place were I explore my feelings and experiences that occur within the web of my motherhood. It is a safe place where I execute my right to freedom of speech. The beautiful thing about the art of journaling is that by purging words onto a piece of paper (or monitor screen) you release them. In doing so, clarity of a situation, experience or emotion may come forth. In making this journaling experience public, I hope that other parents (especially mothers) can gain wisdom, strength, and a sense of community from my entries.

Restless Good Night Routine

Our nighttime routine is anything but routine... it has no rhyme, no rhythm! It is undeniably the most difficult part of the day in the life of autism. When Mom and Dad are both exhausted from the day's events.... one child ready to crash n burn while the other is just getting her second wind.... or so that is how it seems.

Last night I had a revelation about this challenging situation; and ironically it was the very fact that this night was no different than any other that gave me the insight...

Everyone was in bed by 9:00pm. Well, everyone but Sahara... who was running downstairs to find her tiny wooden bed for her tiny plastic Bambi deer figurine. She turned every toy chest over until our apartment looked like a ‘Toys R Us’ explosion took place.

The thing that tugs my heart strings the most about this is that she doesn’t have the words to say, "Hey, did anyone see the little wooden toy bed?" Nope instead, she was running around yelling, "Where'd it go?" coupled with a bunch a mindful jargon that certainly... just maybe… most likely meant, "Hey, did anyone see the little wooden toy bed?"

So we spent an hour looking for a toy that she is obsessed with, but we didn’t know which toy we are looking for... a needle in the hay stack. Thank GOD for Emily, who is usually the one to break the code. She figured it out and Bambi finally got a proper tucking in!! Everyone was back in bed.

10:00 pm

"I hungry. I hungry. I eat chocolate pudding.... I huuunnnngry."

Chocolate Soy Pudding is one of the only things she will eat and I am certain she really was hungry... it had been hours since she had consumed anything other than string and paper; pica sucks and has been rearing its ugly head more frequently again!! This brings us to the next development of the story... After she ate the pudding... she said, "Potty!"

I tell her to go... after 5 minutes I say, "Sahara wipe and come back to bed."

"I POTTY!!"

"Are you pooping?"

"Yes, I poop." This was followed by several minutes of loud grunting. I get up and go to the bathroom to see her pushing with all her might!! Constipation!! I am certain it was triggered by the cardboard she ate the night before. There she sat in tears for a half an hour with just 2 tiny pellets to show for it. My heart aches! I can see the frustration in her eyes as she says, "Potty broken."

11:45 pm

After she settled back into bed, she decided she wanted to sleep on the futon at the end of our bed. We get her settled in, lay back down... and she starts to chatter non-stop. We can understand words intermittently, "mermaid... poop... party... frog...."

12:30 am

She was now hopping like a frog across the futon... and flopping like a mermaid, all while the chattering and giggles continue. Her dad tried to reason with her... but rationally we know there is no reasoning... she is stimming and we have to wait it out. I lay down beside her... I watch and hold the space... I can see that it is not a conscious game she was playing. But rather an obsessive flow of thoughts, actions and words.... pouring out of her.

1:45 am

Then just like every night... she suddenly stops. Silence!! She scoots closer to me... I can feel the sleepy warmth of her body as she cradled into my arms and gently played with my ear lobe and cheek.

2:45 am

The house was asleep.... as my own thoughts kept fading in and out of sleep.

4:00 am

She woke up again to use the bathroom.... sensory issues do not sleep!! It takes her another hour get over the moisture on her skin from the urination.

5:00 am

She was sound asleep. I was beyond the exhausted phase... you know, the one where you can't sleep. I lay there watching her peacefully sleep.... maybe one of the few moments of normalcy in her chaotic world... I heard her sister's heavy breathing… and my husband is in a deep soundless sleep. I was alone with my thoughts in the quiet of the night. I lay there thinking about this... and I conclude that this bedtime routine serves a grand purpose.

I believe that she is emoting the stress of her day; processing the events, words, interactions, demands, fantasies, constipation, pica, raw frustration of living in a world where few understand her thoughts and words... in the only way she knows how... in the quiet of the night… where she is safe and nothing will interrupt this process… she flaps, stims and processes her day. And once this unconscious need subsides she falls into a gentle sleep.

Giving up 'The F Word'

I swear, I admit it, and make no excuses.... I find it cathartic!!

In fact, I bet if you were to read through my posts, you would find it slipping in on some of the entries... like this one.

I vividly remember having an open conversation with the family priest when I was 26 about my love of the F word in my parents' kitchen.... that was interesting!! Sure glad My Mom didn't know what we were talking about in there!

I also remember talking with this saucy nun on campus during my college years about this fantastic word... she loved the F word too!! Isn't that a hoot?

BUT nonetheless, today is a pivotal moment... I have decided to give it up for lent. Oh, Dear Lord, it is going to be a long 40 days!!

BTW, My tween is so excited about this... I am sure she is plotting and planning detailed consequences if I falter even just a wee bit. Maybe I should come up with a replacement word...

Product Review: Getting Into The Vortex

Getting Into The Vortex

Guided Meditations CD and User Guide

By Esther and Jerry Hicks

Let me introduce you to Abraham.

The first thing you need to understand is that Abraham isn’t a person. Yes, that is correct, Abraham is not a person. Abraham is what Esther Hicks accesses while inspiring and motivating others to live a more balanced life through the Law of Attraction. Abraham is an energy source that has had many different labels throughout the ages. To Esther, Abraham is the vehicle in which she creates inspiration, hope and opportunity for all who participate in these teachings.

I am certain some will see this as hocus pocus, new age, metaphysical or possibly even blasphemous. However, I believe that none of that is accurate. In fact, I have found the teachings of Abraham to reinforce my relationship with and trust in God. If you look beyond the manner in which Esther presents her information … the messages that are left are consistently based in The Ultimate Vibrations of love, peace, joy and harmony.

In a time when the world is full of hate, disease, war and economic hardships this is an important message for all to hear.

And to keep in alignment with Alterna-Mom’s message, in a time when our children are experiencing challenges academically, emotionally, physically, and cognitively at an all time high, this is the perfect message to elicit strength and personal empowerment for mainstream parents.

Abraham offers hope and inspiration. Abraham teaches us how to get into a ‘place’ in which we can tap into our true potential and manifest solutions to our challenges. Abraham calls this place The Vortex. The Vortex is simply a meditative state in which we can find solutions to the difficulties in our lives. This isn’t a magical place or a placebo effect, but a meditative discipline in which the solutions can and often do surface.

In the teaching of Abraham, The Vortex is the place in which all things are created… in Christianity, we call this place prayer.

Abraham states that it is not necessary to meditate for more than 15 minutes per day. In fact, they say life is about living, not contemplating about living… and so Abraham has presented us with an effective tool, Getting into the Vortex Guided Meditations CD and User Guide, to teach us how to efficiently meditate and get into this Vortex where intention and creation occur.

In the Guided Meditations CD, Esther’s voice gently carries you through the meditations. Her voice is calm and soothing; eliciting an instant relaxation. Your breath seems to lose itself into the rhythm of the background music… ebbing in and out. Abraham tells us that this is the most important result of this tool; sitting still for 15 minutes a day allowing our breath to match the rhythm of the music on this CD. We do not have to understand what is being said. In fact, we do not have to alter anything in our daily routines, but to find time to be still and breathe.

The most prominent words to me throughout the Getting Into The Vortex CD is “Breathe in, Breathe out.”

In fact, since using this CD, I find myself saying these four words, “Breathe in, Breathe out,” often over my internal chatter during challenging moments. With that, I am able to easily re-center myself through the simple act of consciously breathing. It is in this connection that I remember “who-I-really-am” and remember to release control over many things I have no control over.

There are four tracks on this CD that can empower your life:

• General Well Being Meditation
• Financial Well Being Meditation
• Physical Well Being Meditation
• Relationship Well Being Meditation

Each is unique in verse, yet a similar presentation. I felt that this consistency allowed me to relax more quickly regardless of the track I was listening to. I also have found this to be a perfect way to incorporate meditation into your child’s life. Simply play the CD in the background while your child is playing, bathing or resting and observe subtle changes in the child’s Well Being.

If you are the left brain thinker (like me) that must know what each phrase means and how those words can educe profound change in your life, the User Guide will be a delightful reference book for you. This guide offers clarity. Abraham has elaborated on each phrase in this guide so that everyone can have a deeper understanding to what is being said and intended in this meditative tool.

If you are interested in learning more about Abraham, Esther and Jerry Hicks, or The Vortex, I suggest you look at the links below. This is a very powerful tool for your whole family to achieve all the benefits of basic meditation and much more!

Hay House

Amazon

Barnes & Nobel

Chapters Indigo (Canada)

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!!

IQ tests are done... now what? (Homeschool, Resource Room, something more creative??)

A portion of the verdict is in…

The psychologist called late last night (as requested) and said the IQ portions are done.

Our daughter is testing at an early 3^rd grade level, “…and that is being generous. It’s more second grade.” Although I am not surprised, as that was my assessment when we started homeschooling in the fall, I am feeling over whelmed.

(Note: She is 11 years old; in the 5^th grade ~ we started kindergarten at 6 years because we didn’t feel she was ready, so she was already technically a year behind her peers!)

My main question to veteran homeschoolers is this: Do you re-adjust the curriculum to meet the child where she is? I mean, after all, how can she do the 5^th grade stuff if she doesn’t have the 3^rd and 4^th grade skills? I know that seems like an obvious question, but...

if that is what we decide to do… what about those end of the year assessments?

If I am doing 3^rd grade curriculum with my 5^th grader, the 5^th grade assessment is ridiculous to even administer, right? And if she gets the ‘below proficiency ‘ (which by the way is what she got last year while IN PUBLIC school!!) on the 5^th grade exams, will the district and State of Ohio see that as me not doing my job with this kid homeschooling?

The psychologist explained the only way to put her back into the school system is if they got her an IEP for a severe Learning Delay (haven’t got all the formal diagnosis yet). And with this IEP they put her in a ‘Resource Room’.

Okay, so this is my next issue….

I have ‘issues’ (okay I have big issues) with the resource rooms… even for her sibling who has infantile autism!! It is seclusive, has a stigma, and I want her around peer models (which I know she isn’t getting at home either)!! This child’s emotional well-being is fragile, and this would destroy her!! (No, I am not over reacting, in case that popped into your head!!) This is a child who has been mainstreamed for her entire academic career up until now and…

So I know I already answered THAT question… no resource room for her!

That puts us back at homeschooling… AAARRRGGGHHH!! Apparently, I take this more seriously than then the “professionals” who said at the end of the school year that she was within the ‘norm’ (whatever that means!!) and denied any testing. Not only did they deny the MFE, they said even if they saw challenges in let's say math... they don't offer math intervention. Yes, I know they are totally out of line. I have been raising cain since the 2^nd grade and this particular school district has done nothing! I am rightfully upset!! But, my main concern is my daughter right now.... I will deal with the district later.

As a mother what do you do? Your child’s school days and progress mold their future… how do I help this child????

Okay, to be continued after we get the diagnosis in….

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…

Do you Support Females on the Autism Spectrum? I DO!!

Every morning for the past 11 days I have been reminding my online friends to vote for the Pepsi refresh Project. Specifically, I have asked them to support The Autism Women’s Network to win a $50,000 grant to fund AWN’S PROJECT FAIM (Female Autistic Insight Mentoring) which will host workshops across the USA.

Why is that so important to me?

…Simply, because I have a six year old daughter on the autism spectrum. Really I think that is enough of a reason, don’t you?

Before autism was intimately in my life, I had a fairy tale version of what my life would look like in my head. Yeah, I believe there may have even been a white picket fence in that dream. Silly Me!

When I started noticing (as early as 5 months of age) that my daughter wasn’t developing typically I went through the whole range of emotions… denial, anger, blame – you name it, it was there. Eventually after oceans of tears, I was able to move into a place of acceptance and even gratitude.

Autism HAS blessed my life with friends, opportunities and self growth that would have other wised failed to exist. But, that is my life… it is full of optimism. But, then I hesitate and think about my daughter's future… what will that look like? Will she dream of white picket fences?

Hold the breaks Mom… she is only six!!

Yes, I know, but I don’t think any differently about her life than I do about her neuro-typical sister’s. And with her sister in the middle of the tween-age years I am filled with more questions than answers:

Self esteem ~ Boys ~ Hygiene ~ Dating ~ Peer Pressure ~ Accountability ~ Respect for Self and Others ~ Hormones ~ Friends ~ Academics ~ Body Image ~ Sibling Rivalry ~ Drugs & Alcohol ~ Safe Sex ~ Female Empowerment ~ Communication

And as I am faced with these new issues with her sister, I cannot help but to wonder how I will address this with her. These issues are huge, but couple them with the challenges of autism...

Sensory Processing Issues ~ Communication Barriers ~ Environmental and Dietary Sensitivities ~ Discrimination ~ Physical Limitations ~ Emotional Imbalances ~ Vulnerabilities ~ Stemming ~ Pictorial Thinking ~ Facial Cue Integration ~ Socialization Challenges ~ Cognitive Delays

... and it can be overwhelming. How do I educate her? How do I promote safety? How will she develop self esteem and confidence?

Today she seems to have no awareness of most of these things… she lives for the moment, but that doesn’t mean I don’t prepare myself and become proactive in the female issues that she will eventually face.

I can even let my mind wander about her adult future and what that will look like and what challenges she may or may not endure … And I wonder how does being a female autistic impact these issues for her? How will she get the support she needs to be successful in whatever SHE chooses to do with her life? How will she become an empowered woman when she faces obvious challenges? How will she access the resources she needs for life skills?

College ~ Independent Living ~ Career ~ Marriage ~ Family ~ Childbirth ~ Motherhood ~ Abuse ~ Sexuality ~ Relationships ~ Rape ~ Civil Rights ~ Finances

Raising a daughter has its challenges… add autism to it and it becomes even more challenging.

I am perfectly capable of rising to this challenge… but that doesn’t mean I don’t reach out for supports and education. To me that is what the FAIM project is doing. My daughter does have some empowered Autistic Women on her side, advocating for her and it is through their experience that I embrace hope and yes even excitement about her future.

AWN through their FAIM project will visit 5 US cities to provide “effective supports to autistic females of all ages through sense of community, advocacy, and resources.” This is something our community needs… by community I mean the Female Autistic Community. As a mother to a female child on the autism spectrum, I believe that is my community too. And in my corner of the world we respect, support and encourage members of our community. So... having said that, I am asking all of my friends to support AWN with there vision.

Here is a list of things that this grant will provide (taken directly from the Pepsi Refresh Project Page)…

The Autism Women's Network is unique in that it was founded by women on the autism spectrum. Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy, and resources.

· AWN's Project FAIM (Female Autistic Insight Mentoring) workshops will be the 1st of its kind.

· We plan to set up 5 Project FAIM Workshops across the USA which will focus on qualities specific to females on the autism spectrum. Topics will include: peer supports, adolescence, adult life, relationships, vulnerabilities and successful communications. Project FAIM Workshops will include active supports and information for everyone (autistics, parents, educators, etc.)

· The participants will meet renowned autistic females whereby gaining valuable insight.

· We will secure the Autism Women's Network non-profit status so we can continue to provide Community Events, online Forum support & E-Mentoring as well as our AWN Radio Show.

I believe that this grant will start a ripple effect that is needed among the female autistic population. So

, I invite you to vote for The Autism Women’s Network to win a $50,000 grant to fund AWN’S PROJECT FAIM (Female Autistic Insight Mentoring) daily until the end of this month, August 31, 2010.

Autism and Elopement: Finding A Sense of Hope

Wandering

Elopement

Running

Flight Risk

If you have a child on the spectrum these words might elicit strong emotions within you ~ No words can completely grasp the sinking sensation within your being when you cannot locate your non-verbal child!

I hear autism parents chuckle all the time that they are the only ones who lock doors to keep their children inside, instead of intruders out. It is true. If Sahara gets away from me (inside and out) she will not respond to the question, "Sahara, where are you?" We have resorted to chains on doors to give us some peace of mind... that is until she learned how to use the broom to unlatch the locks. She is not only intelligent, but cleaver!!

She has left the house at night once and it was horrifying!! But, it is just as alarming during day light. One time we found her in naked in a tree house near a neighbor's pool. Your stomach falls and panic fills every cell within you. You aren’t sure if you should run in to get the phone to call 911 or if you should start running through the neighborhood. (I have done both!) When your autistic child is non-verbal and out of your sight it is an indescribable experience!

There are horror stories in the news almost daily: Autistic Adult Missing, Austistic Child Found Alive in Swamp, Autistic Resident Found Dead In Van… these are the headlines that keep me up at night (and I mean that very literally)!! This is a constant fear in the recess of my mind and of the mind of many parents with children on the autism spectrum!!

In fact, just before I sat down to write this blog today, I read a news article from Wichita, Kansas where a 5 year old autistic boy was found in a neighbor’s pond, just 30 minutes after his adult sister noticed he was missing. He was in critical condition, but later died. Tragic!! I pray for this family as they go through the unthinkable!

And I pray for all other families that are on the spectrum facing this manifestation of autism!

This is the kind of story I shared with my daughter’s school during our last IEP meeting. I was attempting to make a case for a one on one paraprofessional for safety purposes (in addition to the academic needs). The school is situated near a busy road and there is a pond on the property. The teacher said, “Well, I know you have problems with that at home, but at school she has never tried to run.” Aside the obvious contempt and judgment within her statement, the fact is it only takes once for a tragedy to occur!!

I decided that if the school wasn’t going to cooperate with us, then we would take matters of safety into our own hands. I started researching GPS locators… they weren’t cheap! (Remember, hubby was downsized and we had had no income for 7 months!) So, I called my daughter’s Developmental Disability Case Manager and inquired about funding… she said the family respite services would fund it!! The Caveat…. we would have to forfeit her music therapy allocations for the whole quarter!!

Well, that wasn't a viable option.

At about the same I happened to see a contest posted on facebook via the Autism Women’s Network. They were giving away a GPS locator and one year’s worth of service to an autism family. What could it hurt to try to win this, right? So, I emailed them at info@awn.com to tell them our story.

Our life possibly changed completely via one phone call this morning...!!!

I just sat down with a cup of coffee this morning as the phone rang. Of course, I cannot find the receiver… welcome to the world of tween-dom. The machine picks up and I hear an unfamiliar voice, but immediately recognize the name, Tricia Kenney with the Autism Women’s Network. I sprint to the living room and find the phone on my daughter’s desk… and answer.

I WON THE GPS LOCATOR FOR SAHARA!!

I am not even sure what I said to Tricia this morning. I was stunned. This is a VERY VERY EMPOWERING FOR ME, SAHARA, HER SISTER AND FATHER... THE WHOLE FAMILY!!

As I sat in the lobby of Children's Hospital this morning (Sahara was in thearpy), I thought about all the places and things we could do...

THE ZOO

COSI

FRANKLIN PARK CONSERVATORY

LIBRARY

FAIRS

THE MALL

GROCERY STORES

PLAYING IN THE BACK YARD

TAKING A WALK

PARKS

FRIEND'S HOUSES

SCHOOL FUNCTIONS

VACATIONS

... and the list goes on.

I think about how much we don't do in the community, because of fear of losing her in public! The stress we have between my husband and myself because we are under the constant stress of who is 'watching' Sahara. The sleepless nights because of the fear that she will walk out of the house. The obvious unjust responsibility that her sister burdens. The gut wrenching agony I have when I worry about someone nabbing her.... or worse!!

And as I think about what this simple, yet phenomenal devise will offer us.... I am filled with hope! I am thinking today about how we will be able to teach her better community skills and how we will be able to have more childhood opportunities and fun as these raw fears vanish.

Even the basic ability to be in a different room from her gives me relief... not only for my sanity, but for her personal growth and autonomy. When we were kids we went outside and we learned boundaries, we explored our environment, and we developed real self-regulating skills. Sahara has never had that opportunity... nor has her sister for that matter. Wow!! I am eager to see how this will play out...

Thank you Sharon Da Vanport and Tricia Kenney of AWN!!

Thank you Autism Women's Network!!

Thank you LifePROTEKT!!