Autism Awareness Month 2012, Day 3

Autism Awareness Month, Day 3:

Sometimes I feel guilty for finding blessings in autism when my daughter has to struggle at everything. Sometimes I HATE autism; yet at the same time I have learned to LOVE EVERY aspect of this experience. It is the most dichotomous, yet empowering experience I have ever faced. Through prayer, meditation, a strong marriage and taking my own power back I have learned let go of the anger to embrace the possibilities.... and I thank God daily for trusting me with the two most amazing daughters ever!! There really are blessings in the world of autism, sometimes you just have to still yourself to see them. ♥

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Breakfast Success

Am I an overachieving mother?

Perhaps!

This morning for breakfast I made...

Sahara ~ Bacon, Fresh Strawberries and a Smoothie. After I delivered it to her (in bed) she said in a sweet 'I love you' sort of voice, "Downstairs, Mom." I suppose she was happy with her selection and just wanted to happily munch while watching Angelina the Ballerina by herself.

Emily ~ Cream Cheese and Homemade Berry Jam Stuffed French Toast, Bacon, Fresh Strawberries and OJ. She, too, is feeling the need to be by herself this morning and is watching Star Gate Atlantis in her own room. (I get sad sometimes about her new desire about having her own space, but that is part of the growing pains of motherhood.)

Mom ~ A Mushroom, Spinach and Cheese Omelet, a Banana and Hot Cup of Coffee. I am basking in the silence of content children in my midst with the fresh breeze coming through the open window. But, I know this moment won't last long... as is it almost time for the noon crunch of getting ready for the bus, then 5th grade home school goes into full swing. Today we move onto fractions and I am actually secretly looking forward to finding out how Junie B Jones is going to get out of the pickle she is in. Or maybe I just like hearing my daughter read...

Dad ~ Well, truthfully, I don't know what he had for breakfast. I intended on waking up early to make him something, but he was already off to work when I rolled out of bed at 7:15. I hope he is having a peaceful day in the pod.

I feel satisfied in this moment. I hope you all enjoyed your morning too...

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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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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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My Morning Rant

I was on Facebook this morning and started to write a morning greeting in response to a post by a local autism center,"

"The latest British Medical Journal paper about autism and vaccines, which provides evidence that the initial report linking autism and vaccines was fraudulent, and the media coverage that ensued, miss an important point…"

...and since my thoughts wouldn't fit the character limit... I brought it here.

Firstly, I was stunned to see an autism school post something so controversial. I do think their job should be education, intervention and advocacy... and that their opinions about the autism/vaccinate debate should be removed from their public statements. (... So I thought that this post was risky.)

But, they are right about questioning the media's coverage ... because, of course, we know that the media is a great place to get unbiased information!!

Secondly, (here I go…) I think Wakefield is a scapegoat!! (Do you know he had nothing to do with our pre-autism decision not to vaccinate?) Yes, that is right we made this decision before autism was in our lives... And in case you are thinking, “See, you didn’t vaccinate and your child still has autism!” Let me clarify, that doesn't 'prove' anything... I often wonder why no one is researching maternal vaccine history... For instance, RhoGam ??

I know too many parents who have reported regressive autism, not to question it’s etiology. I do not think autism is ‘caused’ just by vaccines, and in some cases… that is precisely what I think. But, I also think genetics, environmental toxins take a role as well…

Moving on to what Really pushed my buttons… this particular post went on to quote Autism Speaks,

"Until science discovers the causes of autism and explains its dramatic increase, parents will continue to reach their own conclusions and desperately try a wide range of treatments, whether there is evidence to support them or not. The answer is not to look to the past and look for blame, but rather to look to the future. We need increased research financing directed toward rigorous science that can provide the answers that parents are looking for and deserve. Until this happens, we will continue to wallow in controversy, and people with autism and families will continue to struggle with autism on their own."

Geraldine Dawson

Chief Science Officer, Autism Speaks

New York, Jan. 13, 2011

Editorial in New York TImes by the Chief Science Officer of Autism Speaks

Let me be clear Autism Speaks does not speak for myself OR my child! I have many questions, but mostly where is all this money they raise??? ... and why (or how) should we take YOUR research seriously while you are insulting parents across the world with statements like this... how can we expect unbiased research ? We can't!

In this statement you are indirectly (no, directly) are asking for more money to fund research?? Does anyone else see this statement as exploitation?? In the first two sentences, parental desperation is address… then whap… they put their hand out!

What about the 6 digits your executives are making? Do you know many autism families have lost their homes, have gone down to one income, and are scrapping by to do what they can with what they have for their children while you sit in your fancy upstate New York office getting rich off of us?

I don't need Autism Speaks to tell me that my child is 'broken' or that my marriage is going to end in divorce or that autism is entity stalking my family... I have found a way past her label, the stereotypes, the fears... but that doesn't mean I sit back and quietly listen to this crap... stop exploiting our kids, adult friends and loved ones.

Stop paying your executives 6 digits! Stop spending more ((a lot more)) on travel and office expenses than what you contribute to autism research and family services. Then maybe you don't have to recruit parents on the front line to go out to collect donations and walk... when they should be focusing their attention on their child.

Finally, take the dollar sign of my child's head!!

Let me conclude with this thought...

Whether you believe vaccinations is the trigger for your loved one's autism or whether you embrace nuero-diversity... let's unite to empower the global autism community. It doesn't have to be a heated debate of one side vs the other.

In fact, I have found common ground with both sides. I do believe pre-natal vaccines contributed to my child's condition, but I also accept that she is phenomenal.. autism or not. I will continue to support her and offer her the tools she needs to reduce her challenges. I have found blessings disguised as autism...

But, autism doesn't define who she is... she is Sahara Grace, a fantastic 6 year old exploding with possibilities.

As for Autism Speaks... shame on you for exploiting our community.

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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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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!!

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Happy Hallmark Day!!

I am happy to say I didn't get flowers today!! Yep, happy!! I am proud to say we express our love, gratitude, and appreciation for one another everyday. I do not need a Hallmark Day for me to feel special.

My husband staying up with me all night while I was in agony with the kidney stones says more than a dozen roses.

My husband doing the dishes and laundry without request says more than a box of chocolates.

My husband assisting the 4th grade math homework night after night says more than a card.

My husband standing by my side through the journey of Autism says more than diamonds...

I do not need a Hallmark Day aka Valentines Day to know how much my husband loves me or to make me feel special... For reasons beyond words my husband rocks my world daily... not just on a Hallmark Day! I think I said it best in my blog entry: Moment to Moment.

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A Reflection of Us...

We met when we were just 18 and 20 years old; like most other young adults we were young and full of ambitious dreams. One of our favorite past times was camping; we spent many clear nights under the stars and moon laughing and chattering about our future together.

Never once did the word “Autism” enter our starlit dreams and midnight conversations.

No, instead we painted an ideal about our life together and our future children… They would be perfect, a combination of the two of us. They would have their father’s wit and my compassion splashed with our analytical natures.

…In the shadow of our youth, our relationship would be challenged as we faced autism together, but like anything else lay in our path we faced it together and became stronger than before it existed.

We no longer go camping in nature as there are too many obstacles that threaten our daughter’s safety. Instead, we pitch the tent in our backyard, with the comfort of home at our finger tips. Just this past Labor Day weekend, we lay awake under the moon in our backyard with our youngest daughter obsessively reciting scenes from Dora the Explorer.

I laid there listening to the non-stop chattering that has become comforting to me, thinking about how we have had to redefine our dreams and plan for an uncertain future. I am certain there are other couples who have been drafted into the autism journey that are no longer able to identify with the life they had before autism too. As often as I say the autism doesn’t define us, it has become a part of our identity, our lifestyle, and our future.

Today, I reflect on a young couple naively entering the journey of their lives with an uncertain future. Yet… through the hills of this journey we continue to adore each other. We still have quiet passion and humor. I am so relieved to share this journey with my best friend and lover. It is he who keeps me strong after days of no sleep, or hours of worry… it is he would supports me unconditionally to move forward with not only the autism, but anything I decide I want to explore and put my attention to.

I am grateful I can participate in life with this man of integrity, passion, and strength. And I know that if there is anyone who is going to help me conquer this thing in our life called autism, it is my husband. Together we unite and are better because of it…

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Co-Sleeping Offers The Building Block For Trust and Open Communication

As some of you know, I am an advocate of the family bed. We happened upon this the evening of the day we brought Emily home from the hospital. I couldn’t tolerate that my tiny new baby lay in that cage of crib all alone after spending the first part of her existence within me; my maternal instincts screamed at me to pull her into the bed with us. As soon as I heeded this urge, I felt my anxiety melt away and fell into an innate rhythm of nursing and sleeping through the night.

In The Mother Consciousness I discuss how this prompted me to research the practice of the family bed around the world. I discovered that we were one of the few countries to displace their infants and children from the vicinity of the sleeping quarters of the mother; most infants of the world sleep within the close proximity of the mother in order to beckon the needs of her off spring. So, with my innate yearnings and the realization that this was only taboo in my backyard we ventured into the realm of co-sleeping.

Today, we live in a world where children are disconnected from their mothers & fathers for the majority of their day. Working parents send their younglings to daycare and nursery schools leaving them with a couple waking hours to spend together. If older children are not in school they are off with their friends or absorbed by all of the technology the 21st century offers them. My conclusion is that if you spend time sleeping together at least you have the opportunity to energetically connect.

Recently, I observed some teens that have both parents working out of the home. Now, I am not against the working mother. I was a working mother for the first 6 years of my motherhood, but I am against the parent that takes mothering lightly resulting in unsupervised children or children left with no moral development. A few of the things I saw these kids doing alarmed me... like lighting bottle rockets at their neighbor’s home and lying in the street during rush hour.

That evening during one of our twilight conversations my daughter and I discussed the behaviors we had observed. We talk about the safety issues, the lack of self control and even the boy girl dynamics we witnessed. We were able to have this discussion in the quiet of the night without contempt or the lecturing that typically follows such incidents; at an angle of respect, unconditional love, and self-empowerment.

This is just one of the many times that I understood that the family bed offered a sanctuary to my budding tween. Somehow over the years she has been able to disclose feelings and experiences in this setting that she hasn’t been able to process during the height of the day. It had become a safe haven where all judgment lay behind and it is understood that no matter what she discusses with me regardless of the topic is met with openness.

Could co-sleeping have prevented such deviant behavior in those teens? In and of itself…probably not, but it could have set the stage to reduce the need for attention seeking behaviors that could harm oneself or others. When an infant cries it is cueing the mother to respond, when the infant's needs are responded to appropriately and in a timely manner, the child learns that they can trust the primary caregiver which generalizes to all adults.

When children are displaced and forced to sleep in a separate room and cries are not satiated, they are being hardwired that they cannot trust the adults around them. I believe that when this occurs they learn early on that they have to have dramatic tantrums (lying in the street) in order to get the attention they deserve. In this case, negative attention is better than no attention at all.

I understand the need for independence and self empowerment, but I believe this can be achieved through other means than displacing our children from the close proximity of the mother during the sleeping hours. I also understand the concern of the marital bed, but let me reassure you that in no way has this inhibited our relations. In fact, this has created the opportunity to become creative and spontaneous in our connections. More so, the flirting and quiet sexual innuendos between my husband and myself during our daily activities has created a greater sense of romance; something I see missing from many couples that are far beyond the honeymoon phase of their marriages.

All in all, I have no regrets for the decision we had made in regards to our sleeping arrangements. In fact, I believe that one of the reasons that our youngest daughter (whom is diagnosed with autism) easily displays affection to us and people outside the family construct is because of the foundations laid by attachment parenting practices; co-sleeping and extended breastfeeding. I believe that each of my children have gained positive attributes that have been fostered through these practices.

Last night, however, after creating the perfect sleeping space, Emily decided on her own accord to sleep in her new room. It was a long night for us all… we could hear her toss and turn among her surrogate mothers (stuffed animals) trying to find that perfect nesting space. Then her little sister tossed and turned with the absence of her big sister.

This, too, is a task that I am sure we will all adjust to. And in the mean time, I will have to make a conscious effort to continue to connect with my daughter and offer opportunities for open communication based on trust and respect.

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The Ultimate Gift For Dad

We went to Grandma’s house for a week… the children had a blast splashing in the pool, playing with Grandma, visiting the Zoo, and even going on an African Safari complete with hand feeding buffalo, giraffe, monkeys, camels, and more.

But, truth be known, it was Daddy’s Father’s Day present; a whole week to himself to do whatever he pleased… What filled his spare time didn’t concern me; I trusted him explicitly to appropriately utilize this heartfelt gift to whatever he deemed necessary to fill his spirit.

What did matter… was that he was able to step away from the daily responsibilities of juggling a family, a demanding career, and the many struggles a man faces when his child experiences autism.

He didn’t have to listen to, "When are you coming home?" a thousand times because I was so exhausted from the demands of the day and needed relief. When those 4:45 calls start… he knows he will have to jump out of the role of professional right into the role of daddy just so I could go lay on the bathroom floor for 10 brief minutes to recharge my own batteries.

He didn’t have to attend to my technical incompetence after he just spent a day at the office listening to a bunch of whining adults about their technical woes. I am sure all week he had a sense of relief when he came in through the door knowing he wasn’t going to have to trouble shoot why my outlook address book wasn’t syncing with my mailbox or why I couldn’t print the Webkinz adoption certificates.

We were tempted to get him a shirt instead that stated, "No I won’t fix your computer!" … somehow a week off seemed more appealing to his nature.

I am sure he indulged in a few cigars and drank a High Ball (whiskey and 7-up) while listening to nothing... quietness, I am sure, enveloped him. Certainly, this was a foreign sound from the ten years of child driven noises and 21 years with a woman who loves to talk. I am sure he basked in this delight!

(Yes, I suppose I am a bit jealous… but, I’ll get over it.)

I am just as certain that it was not all pleasure. I know my husband and know that in the recess of his mind he still worried about whether or not the therapy and doctor bills were paid… Whether or not our child was getting enough nutrition and the appropriate services… Whether or not he would ever be able to hold a meaningful conversation with his daughter… Whether or not the girls would be provided for if we were to die... Maybe, he even contemplated whether or not it would be easier on him if he left us (like in 85% of marriages that are faced with autism).

But, I am comforted that by Sunday morning he emailed me saying, "I miss my 3 women! When did you say you were coming home?"

I learned that by the time Sunday night arrived he desperately missed us. I suppose I am reassured that he found himself yearning to rummage around for Red Bear so Emily could sleep and that he missed the nonstop chatter of Sahara having to recite an entire scene from Shark Tales before she could nestle down for the night. I am glad that the house at times was too quiet for him.

I have come to terms that there are moments that seem so hard and painful in the world of autism that it seems easier to run away … but that is why each of us need this type of break now and then, to not only recharge our batteries, but to shatter this illusion and acknowledge that the grass is perfect on this side of the spectrum.

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Why Our Marriage Survives Parenthood and Autism

It was unusual not to see the neighbor’s daughter playing ball or with the dogs, but last night was different. There was somberness in her yard— In the wake of a marriage gone wrong, I saw her quietly eating her dinner on the back deck… alone. I silently wondered how many women across the nation where childless on this Father’s Day.

In America there is currently an overall 60% divorce rate. In a family that faces autism it is even higher— a staggering 85% rate. However, (so far) we have beaten the odds!

I say ‘so far’ because you just don’t know what life will bring you. We haven’t always expected to have the curve balls thrown at us that have come our way on this adventure called marriage… and I am sure there will be more to come. It is how we respond that will help us survive.

We were once told by a good therapist there was two key components in making a marriage work. And, Shirley was right; over the years we have learned the fine art of what has become known to us as "The Two C’s". So by the time we entered the world of parenthood, we were experts in the two things many families struggle with — Compromise and Communication.

When you become a parental unit and are faced with a disability you have no choice but to compromise and communicate. And through the practice of these two traits we have learned to stay in love. Being in love with another is a realm that you develop over time and is much different than the lust and excitement of an early childless relationship.

"Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things." 1 Corinthians 13: 4-13.

These words were read at our marriage ceremony more than 13 years ago, but when the romanticism died we needed to heed these words more than ever. I once put my name everywhere this biblical phrase said, "Love" and asked myself the following questions.

Is Susan Patient?
Is Susan Kind?
Does Susan envy or boost?
Is Susan Arrogant or Rude?
Does Susan insist on her own way?
Is Susan irritable or resentful?
Does Susan rejoice at wrong doing?
Does Susan rejoice with the truth?
Does Susan bear all things?

These answers were my gage on how I was respecting my spouse, my friends, my colleagues, and now my children. I still use this as a guide to treat others the way I want to be treated; The Golden Rule.

Over time, our mastery of Communication, Compromise, and Corinthians has served us well.

Yesterday, we were content to have an adventurous father’s day complete with an old fashioned cookout, good friends and kids running amuck; a day to celebrate alterna-dad. He seemed to enjoy the company of his best friend and his new-found family. But truth be known, we never have been big on the whole hallmark holiday thing.

We tend to have the attitude that if you do not show the person appreciation and respect throughout the year, that one special day isn’t going to make up for the difference. We need to communicate, compromise, and express love all year long to one another—especially in the difficult times.

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