
Tuesday, March 6, 2012
Keep Sick Kids Out of School

Tuesday, May 24, 2011
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!))
Thursday, May 19, 2011
IEP Season

I have come to understand there are 2 different cultures of moms in the month of May... the moms counting down til summer break just so they can count down til school starts AND the moms who are in the midst of IEP-season. No judgement.... just keenly aware of the differences right now.
I used to be in the first culture (minus the countdown for school starting – I always dreaded seeing that big yellow bus pulling up to take my children away.) But once apon a time, May was the time of year to make summer plans and get all excited about the unlimited fun possibilities masked as summer vacation... I miss the simplicity of that lifestyle.
But that is in the past... now, I dread May (not really I love May, but I do dread IEP season). The awkward red tape that is surrounding our special children's education is very irritating to me... let’s face it the IEP really is a bullshit document. You never get what you think your child needs and the services never seem to be quite enough. And the teachers always say they are helpless while the people in suits sitting behind desks in a cozy building making 6 digits are really calling the shots.
I often wonder if they took pay-cuts, could our children get the services they deserve? This isn't a matter of whether or not a child will go to prom (and I guess sometimes it is), but their education really is about their future.... their life and potential. I suppose, as an administrator, it is easy to clock in, do your job and clock out. But for us parents it is a 24/7 lifetime commitment.
A commitment to a child... not a number, a name or a budget... but the living, breathing human being who has unlimited possibilities if given the proper support and tools. It shouldn't have to be this hard to secure our children a free appropriate education (or therapy, but that is another blog entry).
Sunday, March 6, 2011
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 15th… in hopes that we can have the iPads by May 1st.
Thank you,
Susan, Jim, Emily and Sahara
Wednesday, January 26, 2011
My Morning Rant

I was on Facebook this morning and started to write a morning greeting in response to a post by a local autism center,"
"The latest British Medical Journal paper about autism and vaccines, which provides evidence that the initial report linking autism and vaccines was fraudulent, and the media coverage that ensued, miss an important point…"
...and since my thoughts wouldn't fit the character limit... I brought it here.
Firstly, I was stunned to see an autism school post something so controversial. I do think their job should be education, intervention and advocacy... and that their opinions about the autism/vaccinate debate should be removed from their public statements. (... So I thought that this post was risky.)
But, they are right about questioning the media's coverage ... because, of course, we know that the media is a great place to get unbiased information!!
Secondly, (here I go…) I think Wakefield is a scapegoat!! (Do you know he had nothing to do with our pre-autism decision not to vaccinate?) Yes, that is right we made this decision before autism was in our lives... And in case you are thinking, “See, you didn’t vaccinate and your child still has autism!” Let me clarify, that doesn't 'prove' anything... I often wonder why no one is researching maternal vaccine history... For instance, RhoGam ??
I know too many parents who have reported regressive autism, not to question it’s etiology. I do not think autism is ‘caused’ just by vaccines, and in some cases… that is precisely what I think. But, I also think genetics, environmental toxins take a role as well…
Moving on to what Really pushed my buttons… this particular post went on to quote Autism Speaks,
"Until science discovers the causes of autism and explains its dramatic increase, parents will continue to reach their own conclusions and desperately try a wide range of treatments, whether there is evidence to support them or not. The answer is not to look to the past and look for blame, but rather to look to the future. We need increased research financing directed toward rigorous science that can provide the answers that parents are looking for and deserve. Until this happens, we will continue to wallow in controversy, and people with autism and families will continue to struggle with autism on their own."
Geraldine Dawson
Chief Science Officer, Autism Speaks
New York, Jan. 13, 2011
Editorial in New York TImes by the Chief Science Officer of Autism Speaks
Let me be clear Autism Speaks does not speak for myself OR my child! I have many questions, but mostly where is all this money they raise??? ... and why (or how) should we take YOUR research seriously while you are insulting parents across the world with statements like this... how can we expect unbiased research ? We can't!
In this statement you are indirectly (no, directly) are asking for more money to fund research?? Does anyone else see this statement as exploitation?? In the first two sentences, parental desperation is address… then whap… they put their hand out!
What about the 6 digits your executives are making? Do you know many autism families have lost their homes, have gone down to one income, and are scrapping by to do what they can with what they have for their children while you sit in your fancy upstate New York office getting rich off of us?
I don't need Autism Speaks to tell me that my child is 'broken' or that my marriage is going to end in divorce or that autism is entity stalking my family... I have found a way past her label, the stereotypes, the fears... but that doesn't mean I sit back and quietly listen to this crap... stop exploiting our kids, adult friends and loved ones.
Stop paying your executives 6 digits! Stop spending more ((a lot more)) on travel and office expenses than what you contribute to autism research and family services. Then maybe you don't have to recruit parents on the front line to go out to collect donations and walk... when they should be focusing their attention on their child.
Finally, take the dollar sign of my child's head!!
Wednesday, November 3, 2010
IQ tests are done... now what? (Homeschool, Resource Room, something more creative??)

A portion of the verdict is in…
The psychologist called late last night (as requested) and said the IQ portions are done.
Our daughter is testing at an early 3rd grade level, “…and that is being generous. It’s more second grade.” Although I am not surprised, as that was my assessment when we started homeschooling in the fall, I am feeling over whelmed.
(Note: She is 11 years old; in the 5th grade ~ we started kindergarten at 6 years because we didn’t feel she was ready, so she was already technically a year behind her peers!)
My main question to veteran homeschoolers is this: Do you re-adjust the curriculum to meet the child where she is? I mean, after all, how can she do the 5th grade stuff if she doesn’t have the 3rd and 4th grade skills? I know that seems like an obvious question, but...
if that is what we decide to do… what about those end of the year assessments?
If I am doing 3rd grade curriculum with my 5th grader, the 5th grade assessment is ridiculous to even administer, right? And if she gets the ‘below proficiency ‘ (which by the way is what she got last year while IN PUBLIC school!!) on the 5th grade exams, will the district and State of Ohio see that as me not doing my job with this kid homeschooling?
The psychologist explained the only way to put her back into the school system is if they got her an IEP for a severe Learning Delay (haven’t got all the formal diagnosis yet). And with this IEP they put her in a ‘Resource Room’.
Okay, so this is my next issue….
I have ‘issues’ (okay I have big issues) with the resource rooms… even for her sibling who has infantile autism!! It is seclusive, has a stigma, and I want her around peer models (which I know she isn’t getting at home either)!! This child’s emotional well-being is fragile, and this would destroy her!! (No, I am not over reacting, in case that popped into your head!!) This is a child who has been mainstreamed for her entire academic career up until now and…
So I know I already answered THAT question… no resource room for her!
That puts us back at homeschooling… AAARRRGGGHHH!! Apparently, I take this more seriously than then the “professionals” who said at the end of the school year that she was within the ‘norm’ (whatever that means!!) and denied any testing. Not only did they deny the MFE, they said even if they saw challenges in let's say math... they don't offer math intervention. Yes, I know they are totally out of line. I have been raising cain since the 2nd grade and this particular school district has done nothing! I am rightfully upset!! But, my main concern is my daughter right now.... I will deal with the district later.
As a mother what do you do? Your child’s school days and progress mold their future… how do I help this child????
Okay, to be continued after we get the diagnosis in….
Thursday, August 12, 2010
Back to School.... and I am sad!

I just received the long awaited supply list from Sahara’s school for Kindergarten… and it made me cry!! Not only is my baby going to kindergarten, but it was 3x longer than any I had previously with her neuro-typical sister. And then seeing the personal care section… hit me like a ton of bricks.
Today, I feel overwhelmed with the concept of my daughter not entering a general education classroom. This week, I feel annoyed that I am already advocating for her rights and the school isn't even in session. Recently, I have been wondering how it would be like to just focus on purchasing back to school supplies and clothing like a ‘typical’ family. Right now, I feel sad!
This will all come to pass... and in the mean time I have a lot of shopping to do for just one child.
1. 1 box of colored pencils
2. 1 box of 24 count Crayola crayons
3. 4 bottles of Elmer’s white glue
4. 6 white or clear drying Elmer’s glue sticks (Please not blue)
5. 1 box / roll of industrial strength Velcro ( not the smaller button sized pieces please)
6. 1 pack of 4 count AA batteries
7. 1 pack of D batteries
8. 3 rolls of clear packing tape
9. 1 box of 8 count large washable Crayola markers
10. 3 bottles of hand sanitizer
11. 1 pack of colored bold tipped dry-erase markers
12. 6 boxes of tissue
13. 1 large bag of either of the following: Skittles, Gummy bears, M&M’s or Jelly Beans.
14. 1 of your child’s’ favorite CD’s or DVD’s
15. 1 snack pack size of Zip Lock bags
16. 5 no.2 pencils
17. 3 pink erasers
18. 2 water Crayola color tray sets
19. 1 pair of pointed scissors
20. 1 clipboard
21. 1 pack of 4x6in ruled index cards
22. 2 bottles of Lysol Kitchen Spray
Personal care items (please label)
1. 1 toothbrush
2. 1 nailbrush
3. 1 tube of toothpaste
4. 1 hairbrush
5. 5 plastic grocery bags (for soiled clothing)
6. 2 tubes of Chap Stick
7. 1 bottle of lotion
8. 1 bottle/tube of tear free sunscreen
9. 1 container of deodorant
10. 3 wash clothes
11. 1 bottle of tear-free body wash
12. I blanket labeled with your child’s name
Additional Requested Items
Clorox wipes - we use tons of theses
Large bag of various size and color buttons
Paper plates
Various colored Pom-Pom craft balls
Pipe cleaners
Play- doh, any color will do
Cotton Balls
Magnetic tape or strips
Craft “google eyes”
Any fun and easy board game or puzzle
Clear Self Adhesive Laminate (contact paper)
Yarn –any color
Fabric paint – any color
Bubble mixture and bubble toys
Wednesday, August 11, 2010
Do you Support Females on the Autism Spectrum? I DO!!

Every morning for the past 11 days I have been reminding my online friends to vote for the Pepsi refresh Project. Specifically, I have asked them to support The Autism Women’s Network to win a $50,000 grant to fund AWN’S PROJECT FAIM (Female Autistic Insight Mentoring) which will host workshops across the USA.
Why is that so important to me?
…Simply, because I have a six year old daughter on the autism spectrum. Really I think that is enough of a reason, don’t you?
Before autism was intimately in my life, I had a fairy tale version of what my life would look like in my head. Yeah, I believe there may have even been a white picket fence in that dream. Silly Me!
When I started noticing (as early as 5 months of age) that my daughter wasn’t developing typically I went through the whole range of emotions… denial, anger, blame – you name it, it was there. Eventually after oceans of tears, I was able to move into a place of acceptance and even gratitude.
Autism HAS blessed my life with friends, opportunities and self growth that would have other wised failed to exist. But, that is my life… it is full of optimism. But, then I hesitate and think about my daughter's future… what will that look like? Will she dream of white picket fences?
Hold the breaks Mom… she is only six!!
Yes, I know, but I don’t think any differently about her life than I do about her neuro-typical sister’s. And with her sister in the middle of the tween-age years I am filled with more questions than answers:
Self esteem ~ Boys ~ Hygiene ~ Dating ~ Peer Pressure ~ Accountability ~ Respect for Self and Others ~ Hormones ~ Friends ~ Academics ~ Body Image ~ Sibling Rivalry ~ Drugs & Alcohol ~ Safe Sex ~ Female Empowerment ~ Communication
And as I am faced with these new issues with her sister, I cannot help but to wonder how I will address this with her. These issues are huge, but couple them with the challenges of autism...
Sensory Processing Issues ~ Communication Barriers ~ Environmental and Dietary Sensitivities ~ Discrimination ~ Physical Limitations ~ Emotional Imbalances ~ Vulnerabilities ~ Stemming ~ Pictorial Thinking ~ Facial Cue Integration ~ Socialization Challenges ~ Cognitive Delays
... and it can be overwhelming. How do I educate her? How do I promote safety? How will she develop self esteem and confidence?
Today she seems to have no awareness of most of these things… she lives for the moment, but that doesn’t mean I don’t prepare myself and become proactive in the female issues that she will eventually face.
I can even let my mind wander about her adult future and what that will look like and what challenges she may or may not endure … And I wonder how does being a female autistic impact these issues for her? How will she get the support she needs to be successful in whatever SHE chooses to do with her life? How will she become an empowered woman when she faces obvious challenges? How will she access the resources she needs for life skills?
College ~ Independent Living ~ Career ~ Marriage ~ Family ~ Childbirth ~ Motherhood ~ Abuse ~ Sexuality ~ Relationships ~ Rape ~ Civil Rights ~ Finances
Raising a daughter has its challenges… add autism to it and it becomes even more challenging.
I am perfectly capable of rising to this challenge… but that doesn’t mean I don’t reach out for supports and education. To me that is what the FAIM project is doing. My daughter does have some empowered Autistic Women on her side, advocating for her and it is through their experience that I embrace hope and yes even excitement about her future.
AWN through their FAIM project will visit 5 US cities to provide “effective supports to autistic females of all ages through sense of community, advocacy, and resources.” This is something our community needs… by community I mean the Female Autistic Community. As a mother to a female child on the autism spectrum, I believe that is my community too. And in my corner of the world we respect, support and encourage members of our community. So... having said that, I am asking all of my friends to support AWN with there vision.
Here is a list of things that this grant will provide (taken directly from the Pepsi Refresh Project Page)…
The Autism Women's Network is unique in that it was founded by women on the autism spectrum. Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy, and resources.
· AWN's Project FAIM (Female Autistic Insight Mentoring) workshops will be the 1st of its kind.
· We plan to set up 5 Project FAIM Workshops across the USA which will focus on qualities specific to females on the autism spectrum. Topics will include: peer supports, adolescence, adult life, relationships, vulnerabilities and successful communications. Project FAIM Workshops will include active supports and information for everyone (autistics, parents, educators, etc.)
· The participants will meet renowned autistic females whereby gaining valuable insight.
· We will secure the Autism Women's Network non-profit status so we can continue to provide Community Events, online Forum support & E-Mentoring as well as our AWN Radio Show.
, I invite you to vote for The Autism Women’s Network to win a $50,000 grant to fund AWN’S PROJECT FAIM (Female Autistic Insight Mentoring) daily until the end of this month, August 31, 2010.
Wednesday, July 14, 2010
MAMAPALOOZA COLUMBUS IS BECOMING THE BUZZ OF THE CITY

Mamapalooza Columbus is a branch of Mamapalooza Inc., a mom-owned and operated mother advocacy organization founded by Joy Rose of New York City. Mamapalooza Columbus is connecting local women, mothers and families through music, expressive arts, activism and education for cultural, economic and social awareness. This past May marks the fourth anniversary of Mamapalooza Columbus which has not only created a buzz, but inspired a Mamapalooza Committee of Coordinators, a Back to School Event and even one of the Mamas being showcased on Mamapalooza TV and the Museum of Motherhood.
Columbus, Ohio September, 2010 – Mamapalooza Inc.'s ongoing mission is to create authentic, inspirational, large-scale experiences that will reach millions. Mamapalooza Columbus is energetically helping this mission come to fruition.
It was Mamapalooza Columbus 2010 that inspired four Mothers to unite for the empowerment of the women, mothers and families of Columbus, Ohio. Eileen Clary (HandyGirl!) is leading this committee and is credited with starting the action in Columbus as the Regional Coordinator since 2006. Vanessa Abel (Earth Flutter), Joanie Calem (Sing Along and Dance Along) and Susan Richardson (Exceptional Beyond Labels) have joined Eileen as a Committee of Coordinators and have already begun the planning stages for a Back to School event this fall.
This Committee of Coordinators is hoping more mothers in the city of Columbus will join in the fun with innovative activities that impact the women, mothers and families of Columbus. If you have a product or service that focuses on creativity, fun, health, wellness, financial education, expressive arts or if you’re a Mom-preneur, Mamapalooza Columbus wants you to buzz in too!
Some of the other folks involved with Mamapalooza Columbus 2010 were Randi Mockensturm, Tenara & Candice, 7th House Moon, Majestic Belly Dancing, Elliot 12Trees, Leslie Zak, Nancy Miller/Scentsy, Cynthia Minnich/Clearartview, On The Spot Mobile Massage & Bodywork, Columbus Acupuncture & Wellness Center, and Global Gallery. Thank YOU for making Mamapalooza Columbus 2010 the buzz of the city!
Alexis Chapman, Independent Contractor for M.O.M. (Museum of Motherhood), came out to personally support Mamapalooza Columbus 2010. M.O.M. is a sister organization to Mamapalooza Inc., devoted to educating the world about the contributions of mothers both historically and in contemporary culture. Alexis connected with the Columbus mothers and stayed to enjoy some of the Moms that were rocking the stage! Later she connected with one of the committee coordinators, Susan Richardson, and asked her to be a guest blogger on M.O.M. and to be interviewed on Mamapalooza TV.

Saturday, July 3, 2010
Alterna Mom's Wi-Active Challenge: The Why and Day 1-3


