Showing posts with label mothers. Show all posts
Showing posts with label mothers. Show all posts

Tuesday, March 6, 2012

Keep Sick Kids Out of School



If schools (dictated by the state) didn't enforce strict attendance policies and had better defined truancy policies.....

AND if employers would honor a mother's (or father's) inherent right to take time off with her (his) sick children AS NEEDED....

THEN when a child was ill, the parents would have the freedom to allow their children to stay home as long as it took to get them well.

Therefore, If less kids were sent to school sick (even in the early/late stages of a virus), less kids would get sick and this would save the employers dollars; and student sick days used would organically be lessened too ~ resulting in the district benchmarks being met.

And most importantly our children would be sick less often.

So, School Administrators (including secretaries).... stop making us feel guilty for making the call not to send our children to school when the child is sick or showing signs and symptoms of becoming sick.

Employers..... change your sick leave policies. It is ridiculous to think a parent will only miss 3-5 days a year for themselves AND their children being under the weather. Especially single parents or dual working parent households.

Parents.... take your power back! When your child is sick the single most important thing to that child is a parent's care and presence. Keep your children home when they are sick!! Then other children won't get sick as often!!! And those children wouldn't pass it back to your children!!

A vicious cycle solved.

Tuesday, November 29, 2011

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.

Sunday, August 7, 2011

I AM ME... The Autism Discussion with my Daughter

Every year the Ohio State Fair marks a monumental moment for us... the home stretch of summer break. This year was no different... until we arrived there and then the twists and turns of the day lead to an unexpected turning point in our world of autism...

We were greeted by a procession of dozens of motorcycle cops blowing their horns with flashing lights... what was the big deal??

SANTA!

Sahara is obsessed with Santa (and I mean that literally). The past 3 weeks have been riddled with Christmas Carols, crafts and plans about how we now have a fireplace to accommodate The Big Guy entering the house Christmas Eve... never mind you it is the dog days of summer. This has left me wondering why we tell our children this lie.

Now once upon a time I thought this was a magical right of passage.

Today? I see how my older NT daughter is completely upset that I had lied to her all of these years. And although I know we shall get through this, it leaves me wondering how we will address this exaggeration of the truth to our autistic daughter. The not so well thought out excuse, “The spirit of Santa Clause lives in us all as long as we believe,” will certainly not suffice to my concrete thinker.

I have even started saying to her, “What if Mommy is Santa?” And she looks at me with a ‘I don’t understand’ expression and moves on. In fact, these are one of those moments in parenthood that you regret bringing mainstream delusions into the world of autism. I suspect that this will be a very difficult situation to overcome...

Anyways, let’s get back at the State Fair.

Each year we have a previous year’s experience to help measure our progress.... and HUGE MILESTONES were evident.

From being able to ride independently on rides as we stood on the side lines looking on just like the other parents ... to her exclaiming that she wanted to go on the Big Yellow Slide and The Caterpillar (junior roller coaster). What is so amazing about that? She asked for them before she saw them... which means she not only remembered the fair from previous years, but had the words to tell us.

Having more and more words coupled with receptive communication has been our biggest growth this past year (especially the past several months).

Words were sandwiched between every activity... but there we moments that reminded us that autism was still in our midst.

... like the time she refused to stop playing with the squirt guns at the water balloon game... the Carnie yelled, “hey kids if you aren’t going to play, stop touching the guns.” Of course Sahara didn’t understand his words muted over the back ground noises... so I quickly come to her defense, “she has autism and doesn’t understand you”. He huffs away, we move on.

.... or the time she ran across the bridge on an obstacle course and that Carnie yelled at her to stop running and when she didn’t he grabbed her arm and told her to go back and walk the bridge or she wouldn’t be allowed to come back on the rest of the day. I am hot, exhausted and snap, “she has autism". Then he gave me a look like ‘make her listen lady or else’ so I add, ".... I am doing the best I can.”

A few weeks ago I caught myself on numerous occasions saying in reference to her, “She has autism”, as a defense against perceived odd, annoying, or challenging behaviors. I wondered what message that this sent her? I remember thinking that I didn’t want her to use this label as an excuse and I didn’t want her to identify herself solely on this label and so I vowed to shift my language and beliefs. I obviously didn’t do very well with the oath at the Fair.

Each time this ‘defense’ came out of my mouth, I was left with a feeling of regret in my heart. And found my internal dialog was desperately trying to find an alternate way of responding (not reacting) to others frustrations, judgments, and demands on my child who IS EXCEPTIONAL BEYOND THIS LABEL!!

I realized at the fair that this is so much more about me than her... [or so I thought]. My daughter is good at teaching me huge lessons in life... patience, faith, trust, compassion, endurance, etc. This day was no different...

After using the bathroom, she washed her hands. As I looked down I knew that she was going to tear her wrist band for the rides off as soon as I saw it get wet... there was no convincing her to keep it on. She has sensory issues around water... so I knew the wet band was irritating her wrist.

Her dad and sister took off to go ride the big rides while we headed to the other side of the park to see if they would issue a new tag.

Honestly, I didn’t want to shelve out another $22 for a new wrist band and was panicked that they wouldn’t cooperate with my request. We arrived to the tent which was empty all except a middle aged man sitting at a table. He looks up and asks what I need and I blurt out, “My daughter has autism and tore her wrist band off when it got wet, can we get a new one?”

No Resistance.

No questions.

Just an understanding nod of the head.

He has her sit down and he repairs the band and puts it on her ankle over her sock to prevent further skin irritation... pretty sure he has done this before or perhaps he has a special child in his own life.

I am taken by surprise when Sahara starts to sob as we are walking out of the tent. I get down on my knees and ask why she is upset. Her answer punches me in the heart... “AUTISM”... I embrace her and we cry for a moment together... “I SAD!!”

“Does autism make you sad?”

A very clear articulate, “YES!”

“Do you want me to stop saying you have autism?”

She looks me in the eyes and says an even more articulate and clear, “YES!!”

I am floored... I don’t know if I should laugh or cry. On one hand, I am relieved she knows about the autism. Yet on the other, it is my own damn sense of insecurity and my Mama Bear reactions that most likely resulted in her awareness.... and she doesn’t like it... in fact, she said it makes her sad.

I always wondered when we would have “the autism discussion”... I never pictured it happening organically at the Ohio State Fair. But there it is.... “Yes, Sahara, you have autism... but no it does not define you. You are, can do and will become anything you so choose.”

So there it is... My 7 year old quasi verbal child just reminded me why I educate others that our kids are exceptional beyond labels... I have gone introspective and decided it really isn’t anyone’s business why my child has quirks... and really that IS my issue not hers. In her own way, she made it quite clear, that she is not defined by autism... she is Sahara Grace. And so, I move forward into our new chapter of our newly defined world within autism.

Wednesday, July 27, 2011

Dear Autistic Friends... My Gratitude, Frustrations and Empowerment


Dear Adult Autistic Friends,

Thank you for debunking myths about being an autistic adult for me. Sahara (my 7 year old daughter) has gone from catatonic to achieving daily milestones... and I feel hearing your stories and befriending you has helped me set the bar high for this amazing child (when professionals said to institutionalize her).

Traditional therapy and educators didn't instill compassion and empathy in her. Nor did it teach her to strive for self actualization... which she WILL achieve some day. I have done that (along with father and sister.) Together we have worked day and night to see that she have the highest quality of life. Daily we meditate and focus on what our goals are... not the fears and struggles. If we got caught up in all of the woes than we would have little progress.

I have found gifts wrapped around this journey... and each of you have helped me achieve this. Yes, I know there are struggles... anyone who has read this blog knows I understand the raw side of autism. But, what I don't understand is how you set limits on what your autistic child will do 20 years from now. How do I know she won't get married? Or have a fulfilling career? Or travel on speaking engagements about her autism journey?

I don't... like I told the psych, "We don't have a crystal ball".

But, ironically... the extreme opposite is that I also get frustrated when outsiders talk about the gifts of autism... cause they do not know that raw emotional pain we go through and how much harder our kids have to work at seemingly simple things. I get offended by their assumption that they know more about this journey than us.

They do not see how hard I have worked to pull this child out of catatonia... when told we couldn't. How my persistence and attachment parenting taught her compassion, emotion and empathy... when told she couldn't. How we had to scrape pennies to get natural remedies... when they told us they wouldn't work.

I have worked hard at giving her the best chance at a life she so chooses... because she deserves that and so much more. And she has worked even harder to meet all of our demands on her young being.

Yes, like I always say, we have come a long way... but we have even longer way to go. But today I am optimistic that she will be a productive citizen and have all the opportunities her NT sister has. I know she will always see life through different colored glasses, but she is exceptional beyond the label and limitations of autism... as are all of you.

Thank You for your compassion, understanding, encouragement and friendship... it has helped empower me as a mother of a young girl on the spectrum.

~ Alterna-Mom

Sunday, June 5, 2011

Morning Gratitude


Morning Gratitude: Thank You God for trusting me enough to be the mother of these special kids!! Last night I was listening to Sahara talk, yes talk, to Emily and her BFF and I said to Jim... THIS is the same child that the psychologist wanted us to institutionalize... even through all the advocating and tears, I am so humbled to walk this path with them. THEY give our life deeper meaning and for that I am forever grateful!! ♥

Friday, May 27, 2011

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.


Thursday, May 19, 2011

IEP Season


I have come to understand there are 2 different cultures of moms in the month of May... the moms counting down til summer break just so they can count down til school starts AND the moms who are in the midst of IEP-season. No judgement.... just keenly aware of the differences right now.

I used to be in the first culture (minus the countdown for school starting – I always dreaded seeing that big yellow bus pulling up to take my children away.) But once apon a time, May was the time of year to make summer plans and get all excited about the unlimited fun possibilities masked as summer vacation... I miss the simplicity of that lifestyle.

But that is in the past... now, I dread May (not really I love May, but I do dread IEP season). The awkward red tape that is surrounding our special children's education is very irritating to me... let’s face it the IEP really is a bullshit document. You never get what you think your child needs and the services never seem to be quite enough. And the teachers always say they are helpless while the people in suits sitting behind desks in a cozy building making 6 digits are really calling the shots.

I often wonder if they took pay-cuts, could our children get the services they deserve? This isn't a matter of whether or not a child will go to prom (and I guess sometimes it is), but their education really is about their future.... their life and potential. I suppose, as an administrator, it is easy to clock in, do your job and clock out. But for us parents it is a 24/7 lifetime commitment.

A commitment to a child... not a number, a name or a budget... but the living, breathing human being who has unlimited possibilities if given the proper support and tools. It shouldn't have to be this hard to secure our children a free appropriate education (or therapy, but that is another blog entry).

Saturday, April 30, 2011

Autism and Breastfeeding


So, you might be asking what breastfeeding has to do with autism. Well, nothing really… and yet everything in our corner of the world.

April is Autism Awareness Month; I have blogged on just about every topic pertaining to autism… except breastfeeding. Which, to me, seems a bit ironic as that is the single activity that began our quest to discover that autism was in our midst.

Another reason I find this strange is that I am a breastfeeding advocate. In fact, I dedicated a whole chapter in my book, The Mother Consciousness, to breastfeeding. The content ranged from the obvious (the health benefits, economic afford-ability and expressing milk) to the taboo side of nursing (reclaiming the breast as a rite of passage into motherhood as opposed to a sexual icon, nursing beyond infancy and tandem nursing non-multiple birth siblings).

Then of course, there was my self-proclamation of being an expert on breastfeeding. Obviously this was purely my own experiential honorary achievement that I had created. The Mother Consciousness was inspired by my innate desire to explore how the Jungian maternal archetypes had influenced my mindful decisions to partake in natural childbirth and my inherent choices within early motherhood. However, even with years of mindfully nursing my own children, I still was not aware (because it wasn’t evident yet) that nursing also would play a major role in the diagnosis, socialization and developmental growth of my autistic daughter.

The circumstances and awkwardness of nursing my second born daughter offered the first inkling that something wasn’t ‘quite right’. I vividly remember lying in the bed nursing while making googly noises – and feeling a sinking sensation when I noted she wouldn’t look at me or respond to my obvious attempt to interact with her. She stared off in space… into a private world of her own.

I thought this was an odd reaction. So I started to softly… then not so softly, say her name. She didn’t even wiggle a wee bit. I began to have flashbacks of her older sister nursing at this age (5 months) and she would gaze up into my eyes and reach for my face. I felt a panic in my heart as a siren was going off in the confines of my own mind that something wasn’t right.

Over the next two days, the same scenario repeated itself over and over… I increasingly grew more anxious. I knew in my heart that something was wrong, but I did not know it was autism. In fact, it would take years to get professionals to listen to me that something was wrong.

On the Eve of her first Christmas, I finally uttered to my husband, “Honey, we need to talk.” He got that look he gets in his eyes when he senses something is wrong. I took a long deep breath, “I noticed something the other night… well, I am concerned.” (a long pause) “Every time I nurse Sahara she just stares off into space... You know, Emily always gazed in my eyes when she nursed. But I have been thinking… and I don’t think Sahara has ever looked up at me when nursing.”(an even longer pause) “Not even once. She also doesn’t respond to my voice. Do you think she could be deaf?”

I saw tears immediately flow down his cheek as I validated some of his hidden concerns. My heart broke in a million pieces that night. To make a long story short the pediatrician blew our concerns off and said it was because I was a new mom. I reminded him that I have been a mother for 5 ½ years and know when something isn’t right, and there was something wrong…

Fast forward 4 years… Sahara was finally diagnosed with infantile autism on Halloween day 2008. Every time I tell this story, emotion catches in my throat as I think about how she gazed off into space when I nursed her and how the psychologist told us to prepare to institutionalize her because of the severity of her symptoms.

But I also remember her tiny fingers wrapped around mine, caressing me as if to say, “I am in here Mama… don’t worry.” And I think about how, even with the autism, she was able to seek my comfort through my motherly breasts when she was hurt, upset or frustrated just like her nuero-typical sister. That somehow, innocently touching my bare skin brought her the safety she needed in a world that was full of triggers and overwhelming stimuli for her; I was her comfort and transitional object.

I think about her eating disorder (children with autism often are picky eaters or experience pica) how I was always reassured in the fact that she breastfed beyond infancy, so I knew she was getting the most perfect nutrition. And how when she got sick (children with autism often have gut issues and compromised immune responses) I knew that she was still getting healthy anti-bodies through the breast milk. And even though she was catatonic for the first four years of her life, she was able to still bond and interact with me at a level that is beyond comprehension.

I venture to say that the mindful act of breastfeeding and attachment parenting may very well have been the catalyst to help set the stage to pull her out of catatonia when even the psychologists said institutionalization was going to be the only option. I am not ashamed to say we nursed her way beyond toddler-hood. I do believe that when she did not have words, that this motherly act alone, was a way for us to connect and interact with meaning. And when I see her breastfeeding her baby dolls and nurturing them through this intimate act today, I find peace of mind in knowing that she is learning how to express care, love and compassion for another human being.

This past weekend she was on the couch cuddling with me when she started to repetitively poke my breast with her small pointer finger. I smiled at her when she gazed up at me (perhaps I even silently rejoiced that at 6 years of age, she is finally able to gaze into my eyes without hesitation and that by some means we are able to create and nurture those building blocks that she missed during infancy).

What I didn’t expect in that moment, though, was for her to say, “Milk all gone.” I nodded yes and she continued in her broken early speech pattern to say slowly with much effort, “Milk broken. Mommy doctor. Doctor fix Milk.” Tears welled up in my eyes as my heart fell in love with this child for the ten-millionth time!

“No, the doctor can’t fix ‘Milkies’. Sahara is a big girl now, so the milk went bye bye.” We sat there in silence, her fingers continued to poke my breast as our breath synced together just like when she nursed.

“Mommy?”

“Yes, Sahara?”

“Milk all gone?”

“Yes, Milk all gone.”

“Sahara sad.”

“I know. Mommy sad too.”

So why is this interaction so important to share? Simply because it is the most concrete, expressive, lengthy ‘conversation’ we have ever shared together. Amazingly, the act of breastfeeding my daughter continues today to create opportunities for advancement.

If I had one thing to share with young women or expectant mothers, it would be… if you have genetic markers of autism and even if you don’t, seriously consider nursing your child. Nursing your child is not just about feeding him/her. Nursing your child is about cultivating essential human bonding and stimulating neurodevelopment and immune enhancement. Nursing your child could just be that vital gateway for future possibilities to manifest… and that could be ‘utterly’ colossal.

Tuesday, April 26, 2011

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...

Mamapalooza Columbus Spring Festival 2011

MAMAPALOOZA COLUMBUS SPRING FESTIVAL 2011

COLUMBUS, OH (5/14/11) - -

Mamapalooza Columbus, a regional branch of New York’s Mamapalooza Inc., is providing an empowering Spring Festival again in Columbus, Ohio. This fun mom-centered, family-friendly, indoor-outdoor festival will take place Saturday, May 14 12:00Noon - 6:00 p.m at WholeKids Pediatrics & Yoga,1335 Dublin Rd., Columbus, OH 43215.

The first 100 Moms through the gate will receive a re-usable environmentally friendly bag full of goodies, coupons and more! Attendees can take part in a silent raffle, delicious food, LIVE music, and visit a variety of vendor/informational booths.

Dr. Dhanu Sant, MD FAAP will be just one of the many presenters that will be focusing on mother and child issues. Other presenters will be Hiliary Frambes of Parenting.com & Mom Congress, Alissa DeRouchie of Sprout Soup, Eileen Clary of HandyGirl!, and Erin Giddens of Young Living Essential Oils.

Mamapalooza Columbus will provide a safe space for the children to participate in arts and crafts, a creative mural, sing-alongs, story-times, family yoga, face painting and The Columbus Fire Safety House. There will be a nurturing space for nursing mothers too!

The full line-up of many talented mama-musicians & bands that will be rocking the stage include Tenara Calem, Vanessa Prentice, The Ginger Lees, Wicks & Wonder, Columbus Women’s Chorus, Megan Cameron, Za Unit & The Angry Men, One80, The Mamas & The Papa, Jerry & The Hashbrowned Seagulls, Randi Mockensturm, Lost Hollow, Katanya Ingram, Joanie Calem and Elliot 12trees.

Mamapalooza Columbus Spring Festival 2011 is presented by Sprout Soup, A natural family store. WCBE , Central Ohio’s NPR is the festival’s media sponsor. 10% of proceeds will benefit Amethyst Inc, a local women’s shelter. You can connect with Mamapalooza Columbus! on facebook.

Admission: Adults: $5; Children: $1; Families $10

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Monday, April 11, 2011

Still Autism Awareness Month: Your beliefs are important.


It is April 11th and it is still autism awareness month... Are you aware?

When Sahara was just 4 and a half, we were told to prepare to institutionalize her!!

Why?

Because she was catatonic, non-verbal, socially withdrawn, and we were opting to not participate in ABA therapy.

Once we got the confirmation of the label... the denial subsided... and we got to work. It was hard; I will not sugar coat it. I worked 24/7 while trying to make life seem as normal as possible for my whole family.

TODAY she is no longer catatonic, she is a funny, intelligent, determine little girl with potential beyond your comprehension. No, she isn't cured. Yes, she will always have to work a little hard than everyone else. But, we have undeniably made great strides and are well on our way to creating a typical life for her. Typical? What is that anyways?

Never except sub-standards for your child.... your thoughts & beliefs are more important than prognosis from professionals... if you believe she can, she will!!! Sometimes that is all there is to give me strength to go on. I am glad we did it MY way... Sahara will do all of the things that they tried to tell us that she wouldn't... and more!!

Why?

Because her father, her sister and I believe she can... and now we are finding out that so does she. And that belief is what gives us opportunities and empowerment. My expectations are higher than anyones, who better to be her life coach?

This isn't airy-fairy wishful thinking. It takes time, energy, sweat, tears and let's not forget lots of money that never seems to be there... but all of those things are delicately balanced between laughter, joy, hope and unconditional love.

We have come a long way in a mere 2 years... speech, eye contact, parallel play, interactive play, expressive communication, gross and fine motor development... and the catatonia? Gone like the wind.... never to come back.

SAHARA WILL DO OR BECOME ANYTHING SHE DESIRES.

WHY?

BECAUSE SHE HAS THIS FAMILY BEHIND HER....
AND WE SEE POTENTIAL WHEN NO ONE ELSE DOES...

ROCK ON LITTLE GIRL!!!!!!

Friday, April 1, 2011

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.

Sunday, March 13, 2011

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.

Wednesday, February 2, 2011

Everyday Reiki Class for Special Needs Parents & Advocates

I thought I would post an upcoming event I am facilitating. My 'soul' purpose for this class is to empower other parents and advocate with a simple, yet profound tool we have been using daily with our children for the past few years. If you are in central Ohio I hope you can join us.


THIS PRACTICAL CLASS WILL EMPOWER PARENTS & ADVOCATES OF SPECIAL NEEDS CHILDREN TO USE HANDS-ON REIKI FOR EVERYDAY CHALLENGES.



Reiki is a Japanese healing technique that can be performed in a variety of ways promoting ease and relaxation for the participants.

Be prepared to learn what Reiki (energy) is, how to use it and how its application can assist in the daily challenges of the special needs family & classroom.

Other material covered will include how autism and other disorders are related to the CHAKRA SYSTEM and how MEDITATION & the POWER OF INTENTION can dramatically effect our children.

Dress in comfortable clothing and bring a yoga mat or towel to lay on during the hands-on exercises. Refreshments will be available.

WHY I OFFER THIS CLASS:
They say pictures speak a thousand words.... The left pic is my daughter when she was in an autistic state of catatonia (Note the distance in her eyes). The right pic is 4 months later after consistent Reiki/Energy Work.


DISCLAIMER:
Reiki doesn't cure Autism Spectrum Disorder, ADD, ADHD, ODD, PDD-NOS or any other emotional/physical conditions, however by alleviating some of the major energetic stressors in these very sensitive children, overall calming effects can take place without interfering with conventional treatments. In fact, we have found some of the more traditional therapies to be more effective in conjunction with Reiki.

COST:
Cash or a secure payment via paypal... please reference the email: LadySusan@sbcglobal.net

$100
IF you have a medical card or receive county funding, let me know... although I do not accept those funding sources (yet) I will offer you a discounted rate.

ABOUT ME:

Susan E. Richardson, BS ~ Art Therapy, MRC ~ Counseling, Reiki Master

I have a unique background in counseling, holistic wellness and a variety of energy healing modalities. I have been compassionately leading experiential groups and classes for 13 years. I use Reiki daily with my family and have seen miraculous changes in my daughter on that is on the autistic spectrum with consistent Reiki. My goal is to share this information with others so that they may experience similar results.

Friday, December 31, 2010

Book Review: The Power of Intention


The Power of Intention – Gift Edition

Learning to Co-create Your World Your Way

By Dr. Wayne W. Dyer




I was first introduced to Dr. Wayne Dyer many years ago through his public television broadcast of The Power of Intention. I found Dr. Dyer to be articulate, heart centered, peaceful and charming as he thoughtfully spoke his words, “Intention is a force in the universe, and everything and everyone is connected to this invisible force.”

My life was instantly transformed as I integrated The Power of Intention into my own personal life. Specifically, The Seven Faces of Intention impacted my daily actions and thoughts, fostering great change within me— Creativity, Kindness, Love, Beauty, Expansiveness, Abundance and Receptivity. These are powerful concepts that can create profound shifts for anyone when mindfully implemented.

As I re-read the 2010 gift edition of this unparalleled work, those seven concepts elicited a feeling of peace and harmony within the core of my being. I became aware of how much over the years I unconsciously integrated these Faces Of Intention into my own personal daily practices. In particular, I began to distinguish how much Dr. Dyer’s work had influenced my style of mothering…. I keenly became aware of the way in which I intended opportunities, growth, expansion and health within my young children’s lives and how I have taught them core life values through The Power of Intention.

As I continue to nurture these concepts and values with my young children, I understand that they are receiving an extraordinary gift and a means to manifest and cultivate a purposeful life; unlocking a power within them to have control over their unknown futures. I enthusiastically recognize that The Source of creation is alive and expressing itself through these dynamic children, not just mine… but through all children.

I believe the most profound outcome I have experienced with The Power of Intention is in the realm of my perception of what it means to be a special needs mother. When my youngest daughter was diagnosed with infantile autism at age 4 ½ we had a difficult choice... We could either blindly accept the diagnosing psychologist’s perspective of our daughter having a future full of great difficulty OR create a life of unlimited potential and opportunity for her.

At the time of the diagnosis, my husband and I were told that our little girl would never to go college, work or live independently; that she would have immense limitations put on her level of socialization; and that her life would include no option for marriage nor children of her own. As if that wasn’t bad enough, we were told to prepare for a long complicated road ahead of us and to start making plans for a future that was certain to include group homes and a life time of non-verbal communication.

Alone and full of raw emotion, I cried for days about her uncertain future. Then on the third morning, during a meditation I had an epiphany… My daughter was exceptional beyond any label or prognosis forced upon her. This meant I was about to relinquish the perspective of the psychologist AND set into motion my own intentions about the magnificent fulfilling life she inherently deserved.

I immediately began meditating on the things I intended for my daughter… to find her way out of catatonia, to develop verbal communication, to long for touch, to socialize, to play with her older sister, to enter mainstream public education, etc… I began to see her doing these things in my meditations, I focused on the feelings of elation when I witnessed her tiny milestones, and I began to treat her as if she was exceptional beyond the label of autism… a perfect creation through God.

I expected miracles…. And we got them!

The invitation to review The Power of Intention presented itself at the perfect time in our lives. It has served as a gentle reminder of how powerful we all are and how all of our possibilities already reside within us. It has jogged my memory that there are no physical limitations. It has evoked gratitude about a time that I was rendered helpless… and how The Power of Intention turned our lives around in order to discover our daughter being an absolute expression of life!

Dr. Dyer has offered us effective tools to use along our personal journey; tools that have empowered us to not aim at curing our daughter of autism, but to soften the challenges that she experiences so that she may have a fantastic life of her choosing. Our shift in thought has opened the door to infinite opportunities for both of our children and selves.

The Power of Intention, Learning to Co-create Your World Your Way is a perfect read for not only parents of special children, but for anyone seeking change in their lives. Dr. Dyer offers specific tasks and steps to take to unleash the power within you to create that which you desire. Keep in mind, this isn’t a how to recipe style book, rather it is a unique piece of literature that guides you to look at life differently and to open yourself to take an active role in what you kind of life you have.

The Power of Intention is saturated with facts about this energy behind our thoughts and actions. In particular, the summarization of the 29 year research of Dr. David Hawkins is instrumental in the realization that this unseen vibrational force is the frequency that impacts and gives life to everything… including our thoughts, actions, and…. intentions.

Dr. Dyer does more than present these facts and ideas to us, he paints a unique picture through stories and quotes from poets, philosophers and modern day teachers. This collection of words illustrates to us the power of our thought, words and intent; that we can and do have the power within us that can create that which we desire. Dr. Dryer helps us realize that we can have an active role in what takes place in our lives.

Uniquely designed, each page brings the sensation of The Source alive through brilliant bursts of colors and inspirational art. This stunningly beautiful version of Dr. Dyer’s work serves as an excellent addition to your own personal collection or as a thoughtful gift to a loved one.

“Dr. Wayne W. Dyer is an internationally renowned author and speaker in the field of self-development. He is the author of more than 30 books, has created numerous audio programs and videos, and has appeared on thousands of television and radio shows. www.DrWayneDyer.com”

Hay House

Amazon

Barnes & Nobel

Chapters Indigo (Canada)

Tuesday, November 23, 2010

An Autism Christmas Poem: A Walk In Our Shoes











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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~Christine Muczyk

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

Friday, November 19, 2010

My Soap Box: Don't Pretend to Care via Your Product or Service




The more I think about the HollyRod Holiday ipad giveaway the more annoyed I become... why are they putting such income limits on it ($35,000 for a single income and $50,000 for a two income family ~ that is not a lot of money in the world of special needs) and why does my SLP have to be in control of the giftcard ... so we don't qualify... that doesn't mean we can budget this tool that could make a HUGE SUBSTANTIAL difference in my child's life. Apparently, they don't understand the financial crisis in Autism Families.

Why is everything they say is essential so expensive... Biomedical case in point. It would cost me more than $500 to just get the appointment on the books for our local Bio-med doctor... for an appointment that is 12-18 months scheduled out... Yet, alone insurance won't touch the office visit, supplements, and other non-traditional therapies (the oxygen therapy intrigues me).

...Every one should be able to afford to get the care they deem necessary for their kids.

This is precisely why I offer substantial discounts to autism families with energy work... autism families cannot afford $60-$120 an hour for energy work... they can barely afford to feed their kids and pay for the co-pays for the traditional therapies... and unless you have been touched by autism there is no way you can understand this. I watch and listen... (I might burn bridges here) and I have seen countless energy workers trying to exploit this population... perhaps some are heart centered, but not all... I recently had one (a former mentor of mine) try to tell me the other day ... "she isn't autistic. She is on a spectrum, you should make an appointment with me to learn more. I could teach you a lot about 'THEM'!"

...Are you serious???

You went to one weekend course and you think you know more about the autism spectrum than I... who has lived it for the last 6 years? Do you not see the dark circles under my eyes... those are my battle wounds... I wear them with pride. I have countless hours of research at the university of google... and have witnessed countless pokes and prods on a little girl who couldn't comprehend why her mother was letting these strangers violate her space. I have hours logged in at the local lobby where I sit with other mothers (and fathers) and listen to their strategies. I spend every other minute of free time I have either in the library reading or on the world wide web talking to adults on the spectrum or other parents... I live, eat, sleep, breath Autism 24/7 !

Don't offend me!!

Nothing pushes my buttons more than seeing organizations, practitioners, doctors, pharmaceutics, authors, specialty merchandisers... (this list goes on and on!!!) ... that are trying to capitalize off of the challenges our children and adults on the spectrum have. And with the Holidays around the corner we will see more and more of this.


Okay, so maybe that was a soap box... sorry.

Thursday, July 29, 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 LifePROTEKT!!