Attention Educators: Stop Bullshitting Me (Part 1)

I think educators think we [parents] are stupid.

However, I would like to remind them all [teachers, principles, aides and administrators] that as a professional counselor it is my job to see through people’s bullshit. And lately I have been wading in a lot of that.

I have tried to be nice, like Peter Wright suggests... but I have had my fill of social etiquette this year.

(For those of you who don't know: The district is moving our autistic daughter from her current building to the home building based on residency because of 'district growth challenges' or so they say... and we have let them know we do not approve. She is not only flourishing but has built friendships with the kids in her grade level.)

Anyways, the principle out right lied at the IEP meeting stating that the 'administrative team' reviewed her records and the decision was based on her excessive tardiness... "REALLY? because I put her on the bus on time every day this year; she better have gotten to school ON TIME". Of course her school record confirm that she was NEVER late to school. So we were told about 3 more songs and dances on why she couldn’t stay in the building where she was not only established, but flourishing!

What is interesting, we know there are other children in this same building who are not in their home building... and yet they did not get the same letter that we were told was 'standard' and sent to all students not in their appropriate building based on residency.

But the thing that bothered me the most... was the teacher I lovED and respectED didn’t correct the principle in her tardiness accusations... she sat there wide eyed and didn’t say a word... until the principle left the room. THEN she whispered, “She has never been tardy!!” Why didn’t you speak up when the principle was ‘arguing’ with me about this? I thought you were supposed to be Sahara’s advocate. (3 professionals you work with told me you have 'pull' with the district and could advocate for her to stay... so why aren't you??)

Then the therapist and teacher refused to add accommodations into the IEP that support these statements.... “she reads better with the lights off” (sensory issues) AND “she does better in OT with fine motor activities (like writing) when she does Brain Gym first”.

When I tell you I am unhappy about this not being in the IEP I get the response, “they will figure it out.” That Is not only an unprofessional statement, but unacceptable.

My poker face went out the window weeks ago, so you add, “well, Sahara just might tell them herself.”

Seriously?!?!

The child still often speaks in jargon and you are going to expect that level of verbal communication from her? Yet alone that is not the child's responsibility!!

“I thought you said you were going to relay that to the new team yourself?”

"Oh yeah I will” [big cheesy smile]... pardon me I think you are bullshitting me again!!!

This makes me wonder how much more bullshit you dealt out this year. Unfortunately, I will never know since my daughter has gross communication and language delays. But I wonder about the rides home when she said, “Sad... school... sad” as she whimpered. Or the day she came home saying, “Arm hurt....” And when I asked about it ‘nothing’ out of the ordinary was reported.

If you cannot speak your truth in front of the principle or directly to me when confronted.... I wonder how truthful you have been all year. So maybe, just maybe... once again, God is protecting Sahara by having her forced to move on from this building.

I know I have been very verbal about this on facebook lately... that helps me process. And I knew I would eventually get to the silver lining... I think I got there today.

I really was hoping for different outcomes... but time to move on. So, we are agreeing (as if we had a choice) to put her in the home building under the contingency that if we note ANY regression, we are reconvening the IEP team! And I WILL have my head so far up the new team's butt... they will be crossing every T and dotting every I for me next year. I will not let my guard down nor get all buddy-buddy with the new team. They are being hired by me to do a job... and I will make sure they are doing it.

So we end the school year bitter sweet.... you just heard the bitter.

The sweet is Sahara has made HUGE HUGE HUGE progress this year. She has bloomed socially and academically (reading, writing and doing math!!). If I see any hint of regression in the new setting I am no longer afraid to go to bat for this kid!! And again as an educated mother who has worked in the education and counseling fields... I am not hesitant on pulling her and home schooling. She deserves that and much more!

((Stay tuned for part 2 on Stop Bullshitting Me... Part 2 on Emily's adventure!))

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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!!!!!!

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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.

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5 iPads for Autism

I have a brilliant idea!!

I want to get 5 iPads into the hands of non/pre-verbal autistic children... and more if I can.

How?

Well, let me back up a tiny bit and tell you were I got the idea... It stemmed from my frustration with the system. I was using my blog as a rant... aka cheap therapy!! But as I typed those words, I started to get this idea... let's do a fundraiser to raise the funds for an iPad for Sahara.

But, I am not a self-serving person... so I started to think bigger, let's ask for more donations than what we personally need. Let's get enough to fund 5 additional iPads for other Autistics... Imagine the empowerment you would create in those lives!!

Hence the birth of the Sahara's Voice fundraiser.

Well, we posted the fundraiser 5 days ago and have raised $162 so far... while that is awesome!!! I want to keep it rolling.... please share this page with everyone you know... let's show the world what it means to pay it forward!!

Please remember a bunch of little things can add up to be a huge thing!!

If you have a company, consider donating in the company's name. The company will be acknowleged on our blog, twitter, facebook and in press releases.

Here are some links of interest:

iPad GIVES VOICE TO AUTISTICS

Extensive list of iPad applications for people with autism

Expressive application

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Sahara's Voice

Dear Friends,

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

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

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

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

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

So, what do I do?

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

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

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

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

Thank you,

Susan, Jim, Emily and Sahara

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An Autism Christmas Poem: A Walk In Our Shoes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~Christine Muczyk

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

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Open Letter to DQ... How my autistic daughter was abused by your employees

Dear DQ,

This open letter is to let you know that my autistic daughter was insulted, mocked and experienced defamation of character by some of your employees this evening!!

As I was placing my order, my daughter was ordering beside me as well. How ever cute that may sound (and in my motherly eyes it was cute as well as a huge milestone) it opened her up for abuse by your employees. Because of her infantile autism she has a severe speech delay and speech impediment. For the first four years of her life she was catatonic and we have worked tirelessly to pull her out of her inner world and integrate her into the community. Tonight your employees demonstrated that I need to work harder at educating the general populace!

Tonight as she ordered her ice cream next to me in her broken speech (which sounds like baby babble), one of the workers imitated her sounds in a mocking manner!! Not only was I stunned, but so was her 11 year old sister and father! When I announced we could hear them through the speaker, we heard them burst into laughter. No apology!!

When we pulled up to the window, they didn’t acknowledge the incident at all. I am my daughter’s voice until she finds her own, it is my responsibility to speak up for her rights until she can do so for herself. So I informed the worker that I heard everything through the speaker and that I would like to talk to the manager!! The worker did not deny the incident, and meekly said, “Sorry” as he closed the window. I informed the manager that my daughter is disabled and has a condition called autism. I explained to him what happened and he said he heard laughing but was not aware of what prompted the laughter… he apologized and offered me a 25% discount.

A 25% discount!! Is that the compensation for my disabled daughter being subject to humiliation?

The latest statistic published by the government is that Autism affects 1 in 91 children!! So, to you that means that every 91^st kid who comes through your lobby or drive thru is going to be autistic! Your workers must learn not only basic etiquette and common courtesy, but tolerance for those with disabilities. Is it not bad enough we have to fight day and night for the rights of our children with the schools, doctors, insurance companies and politicians… but now with the boys at the local Dairy Queen?

What those workers did was nothing more than bullying and defamation of her character. I have already told many of my friends in the autism community about this incident and many have already said they are going to boycott DQ.

I would like a formal and public apology to not only my daughter, but to the autism community as a whole. And would like to know what DQ as an entity would like to do about this?!?!

Below is the location and information on the order ticket.

Susan Richardson

Dairy Queen

2580 Bethal Road

Columbus, Ohio

Date: October 13, 2010

AIA003984099311

Server 122 Jeffery

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

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

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

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

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

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

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

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

"What!?!?"

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

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

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

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

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

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

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

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

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

WTF?!?!

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

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

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

Here's to a better day tomorrow...

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Wi Active Day Challenge: Day 4

It is Day 4 of my Wi Active Challenge...

Today was easier than Day 2 and thankfully not as much running as the first two days. However, the first two and a half minutes were brutal. When I stated to run the front of my legs hurt... muscles I didn't know I had. And if I did, I didn't know that they could hurt from exercising.

I am enjoying the structure of the devise and find the virtual coach to be actually helpful. Although I do roll my eyes from time to time at her. Thankfully she cannot see me or I'd be running more :)

Dare I say that I actually enjoyed the tennis drill and dance routine. More surprisingly I find the side lunges fun too. But, the best satisfaction is that I am taking my own health seriously; and that feels good.

I burned 100 calories in 21 minutes today... this whole calorie thing is giving me a new perspective about how many calories I consume... I am amazed how much work it takes to burn the calories equivalent to a serving of my favorite salad dressing...

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A Song Reveals An Amazing Gift

Amazing!

I was looking for a song to post for Father's Day on Facebook for my wonderful hubby... being he has 2 fabulous daughters, I immediately went to you-tube looking for Paul Simon's 'Father and Daughter'.

As I listened to the words, "I believe the light that shines on you, will shine on you forever" .... "There will never be a father who loves his daughter, as much as I love you," I knew this was the song.

So, what is so amazing about that??

As I was listening to this song, Sahara booted up the computer, went to the right drive and selected our backup file for The Wild Thornberrys Movie. Firstly, we have 4 drives on the computer with 100's of files. She was able to pick the appropriate drive and find this file among all the others with zero assistance. Amazing!!

Secondly, If you don't know... Paul Simon's song Father and Daughter is the theme song for this movie. So, not only did she find this file, she found it because she recognized it while I was listening to videos on you-tube.

Amazing!!

I have to wonder... is she reading the words on the computer files or does she have them pictorially memorized? She is just entering the world of communication and although I read to her I do not think she can read.... or she can and I don't know it yet?

Any way it is amazing... if this child can memorize this many icons and files and know where each is categorized... what a gift she possesses. I think this is an answer to my question... should we revisit her picture communication program? This is a most astounding YES!

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Bedtime Stemming and Emotions

The clock flashed 1:11 am....

My ears had been listening to the non-stop vocal stemming for 4 hours now. My eyes could barely stay open. I had tried every trick I had up my sleeve; brushing, reiki, floor-time... This was just something we had to ride out.

1:24 am...

I was tired, I knew we had a busy day ahead of us; Music therapy, occupational therapy, physical therapy, and speech therapy. Mondays are our busy days... coming off of a 3 week bout of the kidney stones my mind and body was tired and weak. So tired! Patience has been drained from my essence... I snapped in a voice that must have seemed ferocious to her, "SAHARA, PLEASE GO TO SLEEP!!"

She started to cry. Not a tired cry, but a pissed off 'you hurt my feelings kind of cry!'. She was screaming on top of her lungs this dramatic forced angry cry!! Then she yelled, "I HATE YOU!" (pause) "I HATE YOU!"

I was stunned!!

I laid there in disbelief, not sure if I should cry or laugh. I rewound to the moment my older daughter, Emily, uttered those painful 3 words. I remembered the devastation in my heart and felt a twinge of motherly pain.

1:28 am...

I wasn't sure how to respond, so I laid there listening to the screams and cries of her processing the foreign emotion of being pissed off at her mother. I felt bad I raised my voice. I felt guilty knowing she couldn't control the stemming. And I felt helpless in the knowledge that if I interrupted her, she would have to start all over resulting in a long sleepless night.

1:30 am...

Part of me was quietly relieved as I reached over to rub her warm back. She uttered those hateful words! This had huge significance! It meant that she understood she was pissed off and she understood she was pissed off at me... not the stemming, not the autism, but at her mother for losing her patience. She had come out of her stemming and appropriately experienced her emotions.

1:34 am...

She rolled over into my motherly arms and rest her head upon my breast. She whimpered as she fiddled with my fingers. "Sahara, I love you," I gently whisper as I stroked her tears away. "I love you more than the infinite universe."

1:36 am...

All was quiet. I heard the rise and fall of her exhausted sleep. I brushed away my tears and sighed, "I am so sorry."

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F@#k You, Mommy.... a.k.a. I Love You!

I LOVE YOU... Three simple, yet complex words!

They may just be the most powerful words in existence; yet, so many take them for granted. How often do you utter them in auto-pilot? Or colloquial speech… Love Ya?

The first time Emily said “I love you” she used the wrong words; it wasn’t what she said as much as it was the tone, the face expression, and the endearment behind them that allowed me to experience what she meant as she uttered, “Fuck You, Mommy.”

SCREEEEECH…. WHAT?!?!?

Yep, she looked me straight in the eyes and with all of the tenderness she could summon, in her sweet little voice, she uttered, “Fuck You, Mommy.” I am not sure where she learned that, but she used it in the most innocent loving expression and in an instant I knew she meant I Love You.

After I explained those were not nice words, I gave her the appropriate words to use. Somehow over time we took for granted that she had words to express. That is until Sahara came along and never found hers.

Yes, she can tell me she loves me through expressions and actions… but a mother longs for those three sweet words.

This all was the furthest thing from my mind today at the barn, but as we were leaving the stable, Sahara gestured for me to pick her up. I lifted her up into my arms and out of the blue those sweet sweet words filled my essence, “I OV YOU, MOMMY!”

Again, the words weren’t perfect, but none of that mattered for the second time in my life as she said, “I LOVE YOU, MOMMY!” with tender sincerity.

I, often, hear others insinuate that people with autism are incapable of expressing emotion or engaging in meaningful relationships. I am here to tell you otherwise; I LOVE YOU, MOMMY… spontaneous, un-solicited, functional, compassionate sweet sweet words.

Another milestone achieved!!

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Ignorance About Her 'World'

"Aren't they lucky? They get to live in their own little world. They don’t have to be bothered with what is around them like we do… It must be nice!"

WHAT!?!?!

Yep, that is the response I got during some small talk from the cashier at Star Bucks this morning, after learning I had a daughter diagnosed with autism.

I am sure she wasn’t a complete idiot, because she quickly registered the face expression I had and I am sure I was glaring at her with all the bottled up contempt I have felt for the past five years. She abruptly started talking about her autistic nephew and how he eats toilet paper and how you cannot talk loudly around him… somehow sharing her story was supposed to make the sting of her comment go away.

Was she just trying to relate? I don’t know, frankly, I don’t care. Here is my take…

Firstly, I am not going to sugar coat this… This will have graphic language! I often pride myself on being heart-centered and helping others focus on the positives on this difficult journey… sometimes I think that a small glimpse of hope is what parents on the spectrum need to hear and I made that my mission… to inspire, educate and offer hope to mothers, fathers and siblings… but today I am setting that aside to let others (on the other side of this spectrum) know the nightmare we live!!!

Like it or not this is the attitude of many people in our communities. They see our Children and they have the outer appearance of neurotypical children, so there is this misconception that these kids are well. In fact, I think that many people that are directly affected by autism have this attitude as well. (Grandparents, aunts uncles, friends, ministers, therapists, teachers, neighbors…)

Another woman once invited me to participate in a fundraiser for a local camp for kids with ‘serious illnesses’. So, I asked if they had services for kids with autism and her response knocked me off of my seat; this camp apparently was designed for kids who “suffering with serious illness”.

You know serious illnesses like asthma, arthritis, cancer, heart disease…. NOT AUTISM.

It isn’t like you’re dealing with cancer or a debilitating disease, right? Well, sometimes I think THAT would be easier… your fate is presented and there is a clear cut plan of what to do. In many of our cases, we have to go through life guessing what is going to work best of our child, because no one has a fucking clue what to do with them.

No one is doing unbiased third party research… because no money is to be made.

No one is advocating for action against the discrimination they receive from insurance companies… because it will cost too much to treat.

No one is planning for their future… because they don’t acknowledge that this is a disability and it will affect them long after the parents are gone.

The day to day challenges are dismissed as behavior problems… no one sees that it IS a serious illness; you know a medical condition….

Yes, Autism is a medical condition that prevents my child from wanting to wear clothing… no amount of coaxing is going to solve that over night!

It is a medical condition that prevents my child from having functional speech… can your child tell you if someone sexually assaulted her… mine can’t.

It is a medical condition that causes her to not have interest in what the kids outside are doing… she is not in her own world Miss Cashier she is isolated in a medical condition that won’t release its grip.

It is a medical condition that gives my child the never ending need to complete an entire cartoon episode or movie scene before she can lie down at night and sleep for a few hours before waking up because, well, I don’t know why she wakes up…. She can’t tell me!

It is a medical condition that keeps me up at night worrying about her future… will she go to kindergarten, college, get married, or have kids??

It is a medical condition that makes me call people and say don’t name my child in your will… that would really fuck up her services and treatment plan!

It is a medical condition that prevents her from sitting down with us to eat dinner… missing out on our conversations, laughter, and bonding.

It is a medical condition that makes her crave the same foods presented the same way every day… and, yes, even string, toilet paper, and dirt.

It is a medical condition that prevents me from getting a job… I have to take her to Occupational therapy, Music therapy, Speech therapy, Physical therapy… to the neurologist, geneticist, psychologist… the appointments never end.

It is a medical condition that creates fear about what will happen to her if I die… so; I have just accepted that I cannot die… I must out live my daughter so I don’t have to worry about what will happen to her, because it kills me inside to think about her future. No one in my eyes is qualified to take over.

It is a medical condition that mandates my other daughter to be put on the back burner too often…will the create anger, resentment, or rage?

It is a fucking medical condition!

No, my daughter isn’t lucky to be in her own world. I know she looks like a normal 5 year old in the cart as I push her through the rare trip to the store, but I work daily and, often, through the night at figuring out how to pull her into our world.

I want to know what she thinks, loves, knows, remembers, cherishes…

I want her to be a part of my world, her sister’s world, her father’s world, THIS WORLD!!

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NEVER Brush Face, Chest or Stomach

What would you do if you found out you were given a treatment protocol to do with your young child at home without knowing that there were specific instructions that you needed to take? And that the precautions were not addressed with you before, during or after you began treatment? In fact, you didn’t know that there were any warnings associated with a seemingly safe procedure until almost a year later!

Remember the old speech and occupational therapist that I fired… their lack of professionalism continues to haunt me. Yes, I know you thought I laid this to rest; honestly so did I… but here we go again! Only this time I am asking the question, “What do I do with this information?”

Recently, we ventured to Nationwide Children’s hospital to obtain a formal occupational therapy evaluation. During the interview I was asked about previous OT exposure. I refrained from saying what was really on my mind. Instead, I let her know that there were unprofessional circumstances that prompted her dismissal.

Somewhere during this evaluation the evaluator asked about a sensory diet.

“A Sensory What?!?!”

I responded, “The former OT never mentioned a sensory diet to me before… she mostly gave Sahara dittos and puzzles to complete coupled with jumping on a rebounder and balancing on a balance beam. In fact, when I told her I read somewhere that my OT should be able to help us with eating issues she just looked at me like a deer in head lights… that is when I started to question their ability to effectively treat Sahara. “

The evaluator said that she had seen other children with similar sensory issues as Sahara and that she thought she would highly benefit from this sensory diet. She said that we should start by teaching us how to do brushing. I responded, “Oh, well, the old OT did do that much. She gave me a little white surgical brush to use on Sahara when she felt agitated… I was instructed to stroke it on her at my own discretion and to try it on myself because it felt good.”

I didn’t understand the expression on the evaluator’s face; but it was clear something in my statement rubbed her wrong.

She continued to explain that ‘brushing’ was formally known as Deep Pressure/Porprioceptive Method Protocol for Sensory Defensiveness. I was then given a handout explaining this protocol and the instructions on how to do this which included the statement, “Only complete if you have been instructed by a trained therapist!”. It also included specific areas of the body not to use the brush on; “NEVER brush the face, chest, or stomach.”

Why was I never told this last fall when given the brush to use at home by the old OT?

As we discussed this further, I was informed that after carefully stimulating the specific deep pressure receptors of the skin you are suppose to do joint compressions (both in a set sequence) on the child to reset the nervous system. You end the session with heavy body work like carrying a backpack, sitting on a therapy ball, being hugged or anything else that stimulates the child proprioceptively and by stimulating the child orally like eating crunchy food, humming, or using a whistle. Each of these steps has a science behind it and it critical to the entire process.

“IF you rub the brush on the face, head or neck you could stimulate a seizure.”

WHAT!?!?!

Yep, and being that Sahara’s ECG showed epileptic frequencies, this was apparently a very dangerous thing to do without specific instruction. Oh, and by the way, I was informed that if you brush over the chest you could trigger heart problems and over the stomach could stimulate internal organ distress.

I was appalled that none of this was explained to me by the former OT. My only conclusion is that she does not qualify as the “instructed by a trained therapist.” Frankly, I wanted to march down there and rip her a new one, but the rational part of my essence stopped me. But, I am left with this innate pull to do something.

What do you think?

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Narration Inspires Speech

In May I fired our speech therapist for numerous reasons... one of them being that she told me that I enabled Sahara too much and that she wouldn't be talking by the age of 8.

So, with no speech therapist— we enter the summer with two paths to choose from—one was to be paralyzed with fear of losing the little speech we had while the other was to see this as an opportunity to be innovative with natural speech development. Being a ‘glass half full’ kind of mom I decided to embrace the opportunity.

Our new found freedom allowed us to venture wherever and whenever we wanted... but no matter where we ended up we found that there was always an opportunity for natural speech and communication.

We spent 2 months playing and enjoying summer while waiting for a speech evaluation through Children’s hospital. The assessment revealed that Sahara had receptive speech of a 24 month old and expressive speech of an 18 month old. (Note: Sahara will be 60 months (5 years old) on Sunday.) For some this news might be devastating, but not for me.

Instead, we continued to work on labeling everyday objects, comparing pictures, answering WH questions, yes/no questions, and following simple 1 – 2 step directions throughout our adventures and daily activities.

The opportunity for speech expression exists in every activity of daily living; and no opportunity went wasted. Sometimes I found myself mindlessly narrating my day, "I am cutting an onion with a sharp knife, I am putting the chopped onion in the salad bowl. The salad looks colorful… I see red tomatoes, green peppers, purple onions; oh there is a cucumber with seeds. Who’s that? Daddy is home. I missed daddy. Do you think daddy wants salad? I am setting the table. Should we eat our salad in a bowl or on a plate? How many plates do we need? One, two, three, four... there are four people here so we need four plates. Do we eat salad with a spoon or a fork?" Etc…

Narration has become second nature to me. With this constant input I have noticed an increase in her vocabulary and spontaneous speech. I was thrilled, but not surprised to hear Sahara said 13 'phrases' during a 45 minutes session with her new Speech therapist yesterday. Not words… phrases!

I want more bubbles, please.
The cat says meow.
No, doll house.
You’re welcome.
Oh no! It’s dark!
No shoes on.
I want mommy.
My nametag, please.
No no, yucky.
I eat apple on apple tree.
All done, nametag.
Want duck, please.
Moo, quack quack, woof woof, neigh neigh, bahh.

I expect that by the age of 8 she will not be wordless, but having conversations. I look forward to uncovering the things I long to learn about her... like, what she is thinking about when she looks up at the ceiling or what her favorite color is or how she wants her room decorated.

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