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Showing posts with label fathers. Show all posts
Showing posts with label fathers. Show all posts

Tuesday, 6 March 2012

Keep Sick Kids Out of School

Posted on 06:16 by tripal h


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.

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Posted in child's health, decision making, Education, Family Issues, fathers, Home Remedies, mothers, physical health, self empowerment | No comments

Sunday, 7 August 2011

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

Posted on 10:47 by tripal h

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.

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Posted in autism, community, confidence, decision making, emotional health, Family Issues, fathers, mothers, ohio state fair, self empowerment, sensory issues, Water | No comments

Wednesday, 27 July 2011

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

Posted on 19:23 by tripal h

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
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Posted in attachment parenting, autism, AWN, fathers, gratitude, Home Remedies, Meditation, mothers, self empowerment, Siblings, The Power of Intention | No comments

Sunday, 5 June 2011

Morning Gratitude

Posted on 07:00 by tripal h

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!! ♥
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Posted in autism, confidence, decision making, emotional health, fathers, gratitude, mothers, self empowerment, Siblings | No comments

Tuesday, 26 April 2011

Breakfast Success

Posted on 08:28 by tripal h

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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Posted in emotional health, Family Issues, fathers, gratitude, Homeschool, marriage, mothers | No comments

Monday, 11 April 2011

Still Autism Awareness Month: Your beliefs are important.

Posted on 05:45 by tripal h

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!!!!!!
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Posted in autism, Autism awareness month, confidence, decision making, fathers, Home Remedies, mothers, Siblings, speech therapy | No comments

Friday, 1 April 2011

Autism Awareness Day: In a nutshell

Posted on 14:20 by tripal h

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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Posted in autism, Autism awareness month, Family Issues, fathers, holiday, Home Remedies, marriage, mothers, self empowerment | No comments

Sunday, 13 March 2011

Restless Good Night Routine

Posted on 09:50 by tripal h

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.

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Posted in Energy, Family Issues, fathers, mothers, sensory issues, sensory processing, Siblings, Sleep issues, speech therapy, Stress | No comments

Sunday, 13 February 2011

Autisms Sneak Attack on My Heart

Posted on 08:08 by tripal h

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 3rd 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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Posted in autism, emotional health, Family Issues, fathers, holiday, marriage, puberty, self empowerment, Siblings, Water | No comments

Friday, 19 November 2010

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

Posted on 07:00 by tripal h



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.
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Posted in autism, Economy, emotional health, fathers, mothers, self empowerment | No comments

Sunday, 31 October 2010

2 Year Anniversary: Reflections on Autism

Posted on 18:17 by tripal h


Today is the 2 year anniversary of Sahara’s formal diagnosis of Infantile Autism.




I thought about writing about the huge accomplishments we have seen in the past 24 months… and let there be no mistake they have been huge!! We have left Catatonia in the dust!! Her speech, socialization, cognition, sensory, and every other facet of her being has exploded into this wonderful expression of life!! I am so proud of all of her hard work.

...Yes, we have come a long way, but we have an even farther way to go.

I thought about writing about the blessings I have found in the world of Autism… and let there be no mistake there are huge blessings. I have made friendships and have encountered opportunities that would have otherwise failed to exist. Read my list of blessings HERE.

...Yes, blessings are always there.

I thought about writing about the spiritual side of Autism… and let there be no mistake my daughter is more connected to God than I could ever dream of. However, I have learned to trust God more and that He trusts me even more than that.

...Yes, God is good.

I thought about writing about the fears I have endured over the past year… and let there be no mistake there are fears that I face on a daily basis; elopement, wandering, sexual predators, IEPs, civil rights, bullying, harassment…

...Yes, there are dark corners in my life.

I thought about writing about the struggles her sister has faced… and let there be no mistake that she had to face more in her short lifetime than your typical tween. She has had part of her childhood ripped away by this invisible monster called Autism that consistently puts her on the back burner.

...Yes, siblings have it rough.

I thought about writing about the strain in our marriage… and let there be no mistake there has been strain. The piles of doctor bills that insurance refuses to cover, the reduction to one income, and the never ending discussions about the never ending issues that circle our life.

...Yes, communication is key.

I thought about writing how the diagnosing psychologist was wrong is her prognosis… and let there be no mistake she was wrong! My daughter is talking, socializing and living a fulfilling life. She will go to college, have a career, a family and any other thing she so chooses to do.

...Yes, possibilities are limitless.

And as I thought about all of the things I could write, I realized that the most important thing to say today was that I would like to introduce you my daughter, Sahara Grace.

Sahara is six years old and just started kindergarten. She likes her teacher, follows directions well and declares that she loves school each time she gets off of the yellow bus. Sahara is funny, witty and even sarcastic. She loves animals, bats, watermelon, Curious George and Mr. Bean. She enjoys riding her bike, swimming and playing hide-and-go-seek. She has self determination, a sense of adventure and the patience of a saint.

Sahara’s best friend is her eleven year old sister, Emily. Not only do they share the common bond of sisterhood, they also share the passion for horses, dinosaurs, water activities, chocolate, the outdoors and just about everything else they venture to do; in fact, they are almost inseparable. Daily my daughters inspire me to be a better mother and person!


You can read more about our early journey (HERE) on the Autism Women’s Network.

I would like to conclude by saying that if you are a parent of a child that you think may be on the autism spectrum… you are not alone! Demand that someone listen to you about your concerns so that your child can start getting the services and care she/he needs. Then find a support group so you can get the care you need.

I have found that joining Twitter and Face Book to be one of the best things I could have done for ME. It was through a sense of community and knowledge that I was able to empower myself to stand up to the plate and become my daughter’s best advocate.

Read about the Signs and Symptoms of Autism HERE

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Friday, 29 October 2010

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

Posted on 07:33 by tripal h

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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Posted in autism, brushing, Children's health, emotional health, Family Issues, fathers, gratitude, High Fructose Corn Syrup, holiday, laughter, marriage, sensory issues, Siblings, Stress | No comments

Thursday, 29 July 2010

Autism and Elopement: Finding A Sense of Hope

Posted on 13:24 by tripal h

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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Posted in autism, cell phones, Children's health, elopement, emotional health, fathers, gps locator, language, marriage, media, mothers, self empowerment, Stress, tweens, twitter | No comments
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