Autisms Sneak Attack on My Heart

It has been a rough week in the world of autism at the Richardson’s…

~ PICA reared its ugly head again… I do not comprehend how my daughter can eat foam off of the underside of the mini-trampoline, yet refuse to eat the wholesome yummy food I loving create for the family. (Although, I know this isn’t a logical quest meant to understand… Pica isn’t rational.) But, not only foam; toilet paper, foil, string… yak!! The thought makes me cringe. I try to focus in those moments that this is not a conscious decision… it is part of the autism.

~ She is still obsessed with fire. We have thrown away every candle in the house… but it is not like we can just curb the gas stove. I have looked at locks and nothing seems Sahara-proof. I wonder what the fascination is with the fire. …The cause and effect? …The beautiful flicker? …The control? Perhaps all of it… Regardless, the lingering smell in the house is haunting!!! The innocent, “nothinnnnng” is undeniably infuriating… The fear is grasping!! I acknowledge I may never sleep again…

~ With young girls in the house, I have an open door bathroom policy. I view it as a natural way to educate them about proper feminine hygiene and the like. Well… until I found Sahara this week… with a tampon and trying to insert it up her rear-end. (Did I state that gently enough?) Realizing she thinks there are only 2 exits down there; how do you explain the 3^rd to an autistic child with communication delays? Needless to say the tampons have been locked down with the other random items of mischief. But, I am still left standing… wondering… pondering… how do I teach her about the birds n the bees and body changes?

~ Which leads us to the next event of the week… usually when Sahara is too quiet… we worry!! When I went up stairs to check on her, the bathroom door slammed. Once I got in the room, I was horrified to find she had climbed the linen closet (top shelf) to get down a razor… well, it could have been worse. (I remember my niece’s first blood ridden trial shave vividly!) But, luckily Sahara was just left with razor burned arm pits (which really is bad enough)!! So, yes, now the razors are residing with the tampons under lock and key.

~ The ultimate meltdown this week was exacerbated by tears… yup, her own tears compounded her meltdown. She has major sensory issues around getting wet… and her tears during her melt down flew her into a whirlwind of emotions and physical pain. Moments like these break my heart. I try my best to stay composed and support her patiently… but the helpless feelings can even swallow the calmest person.

Speaking of broken hearts…. Its Valentine’s Day weekend.

We typically do not celebrate Valentine’s Day… in fact; I have dubbed it a “Hallmark Day”. You can read HERE how last year I was pleased to get nothing for Valentine’s Day… as my hubby shows me daily in small intimate moments nestled between motherhood & autism how much he loves me.

However, Friday night we had a minor rare spat... when these happen, they usually happen just before bedtime when we are both exhausted from the emotional and physical adventures of the day. Well, that evening was no different… I happened to have a menstrual headache and recovering from a fever, plus I knew I had to be up at 5 AM to go to an important meeting… it was midnight and the kids were still up…

Sahara was running up and down the hall scripting! She then said she was hungry and ran downstairs. Well, because of the fire hazard, she is not allowed in the kitchen by herself… but I didn’t have the strength to get up… I just wanted to melt into my bed. Emily yelled to her father in the other room, “Daaaaad, she’s going downstairs.” He slammed the wall with his palm; it shocked me… which caused me to verbally react, “Did you really just smack the wall? Don’t do that!” I heard him huff only more… we are both exhausted… ready to collapse, but we know we can’t until Sahara is sound asleep…. I snap at him to forget it… he needs to remove himself and I will take care of it… Emily is upset; Sahara is stimming even more… I am fighting tears of anger back… anger at what… not him, not her… but just that our lives aren’t supposed to be like this… I am pissed that I don’t have my white fucking picket fence!! I want to scream… “Where’s my fucking fence!?!?!”

Soon after this, I hear Emily and Dad’s heavy rhythmic breathing... they are asleep. Sahara stays in bed for the rest of the night, but it takes another hour or so to get her settle into sleep. All is still… the alarm is going to go off in 4 hours… and I am laying there listening to the silence of the night… talking with God in the moonlight about this stupid fence in my illogical fantasies.

Later the next morning… my arm hurts… my left arm. I am walking through Walmart… trying to breathe in my nose, out my mouth… chest pains too… breathe in, breath out. I use cognitive thoughts to get me through the store… but inside I am really thinking about my Mom what has vascular disease (she had her leg amputated as a result last spring and had numerous heart attacks over the previous year… but I know it can’t be my heart because soon after her amputation, I went to our family doctor and had a complete exam to rule out diabetes and heart disease… he said I was healthy. His only advice… lose weight. What about the chest pains I get, “Susan, you’ve had them for 5 years.. it is most likely anxiety.” I actually try to tell him I have no stress… have to laugh… did you read the first part of this blog & I try to tell the doctor I have no stress.)

As the day went on, I was sure I was having a heart attack or stroke… but kept saying, ‘well it has been 3 hours, 6 hours, 8 hours, 12 hours… surely if I was having one it would have happened already’. I go take a shower to loosen up my muscles… it works until I step out and see Sahara sitting on the floor surrounded by my raw organic almonds… one in which she is attempting to put up her rectum. Hubby gives her a disgusted look and I call him on it, he looks at me and for the first time ever utters the words… “I HATE AUTISM!!” This is a paramount moment…

Part of me is relieved… I am not the only one. How liberating for him to say it. How healing for us to be in this raw moment together… how therapeutic to acknowledge that it isn’t the child we are frustrated and exhausted from… but autism.

Emily is oblivious to my heavy heart of the day and is planning out a perfect Valentine’s Dance… she has planned out the food, drinks, dancing and presents. It comes together perfectly… Sahara opens her own presents and is excited about them. Hubby dresses up in a suit and tie and sweeps Emily off her feet in a waltz-like dance… the smile of her face… priceless… I am certain it is a moment she will embed in her memory forever… a perfect family moment. A perfect family!!

When I lay down, I realize the pain in my arm all day was from Sahara’s head when she sleeps… I know this because when she laid there again to nuzzle… I felt the muscle screech in pain. I lay there thinking about how silly I was all day thinking I was having a heart attack, when in fact I was having an attack of the heart… My heart yearns for moments of normalcy for my children, for my husband, and selfishly for myself.

I laid there wondering how many other mothers feel like I do… recognizing the inherent beauty in her children and family, and yet raw emotion sneaks in intermittently to get the best of her.

…Today I feel better, more aware of my limitations, my strengths, my hopes and dreams. Today I feel ready to create a new picket fence… but this one isn’t all white and rigid… perhaps it is colored appropriately with all of the colors of the spectrum and full of groves & curves.

… And more importantly, today I feel ready to empower other mothers who may not have the inner-resources I have to pull myself out of the funk so easily.

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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 believe that this grant will start a ripple effect that is needed among the female autistic population. So

, 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.

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A Priceless Moment & Life Lessons Among Monsters

Movie Tickets... $9

Nachos n Cheese... $4.75

"1" Bottle of Water... $3.75

Bag of Pop Corn... $5.75

Raffle Ticket... $1

Pizza... $22

Game Room Tokens... $4

A Mother and Daughter Moment.... PRICELESS!!

I have been wanting to spend some one on one time with my oldest daughter. So, when her Daddy suggested I take her to see Eclipse I embraced the opportunity.

We had a great conversation on the way to the theater and were able to connect during the film. She tickled me pink when she leaned over to exclaim her appreciation for the scenery. Especially because she was oblivious to the passionate kiss taking place as she noticed the serenity of the ice capped mountains and falling snow. It made me appreciate not only her innocence but her obvious connection to nature's beauty!

You have to realize my daughter is not one to be enamored by the romanticism that this movie cradles. She does not have her head in the clouds of boys and fantasy... she does however love a good story full of action though (thanks to her father). I presume she was eagerly waiting for the fight seen the whole 2 hours evident by her subtle movement forward as the fight began.

Me? Well, I love a good romance... and how much more erotic can you get than to be torn between the ultimate bad guy (a vampire) and the ultimate nice guy (a werewolf)? The rawness pulls me in... maybe because my life is so far removed from this. Surprisingly, because I have never appreciated the mysticism of the vampire... even as a young child they terrified me. Perhaps that is why I like this version... they are not portrayed as the thirsty monsters that once harbored my nightmares.

However, I am keenly aware of the propaganda the this saga stands for... mostly motivated by the mighty dollar. I am a little disgusted by the chatter that I heard among women, young ladies and children before, during and after the film...

Putting that aside, I am completely intrigued by the beauty within the ability to capture unconditional love and loyalty captured by Stephanie Meyer in her imagination. I appreciate the awesomeness (is that a word?) within the world of monsters that is created by Stephanie in the twilight saga.

Am I a Twi-Mom? ...Not by a long shot. Am I a little twisted for being enamored by someone 20 years younger than me? ...It isn't the actor that intrigues me, it is the immortality, pain and story behind the character, so no. Do I think there are lessons interwoven within? ... Absolutely!

In a world full of corruption, pain and deceit... we could take some lesson by the Cullens in their unconditional loyalty, love and companionship. Imagine how different the world would be if we all embraced our own inner demons to support our family and loved ones to the extent in which they do for theirs.

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Inquiring Moms Question: Is 10 Years Old Too Young To Start Shaving?

My daughter is beginning to bloom out of her Tomboyish persona into a developing Tween. When we went school shopping this year she demonstrated how true this was... she was bopping to the music in the teen stores and modeling feminine outfits with confidence. This is a new side to her that I think is quite frankly freaking her father out, but I am excited to see her bloom into her own essence. So, during our girls outing, we carefully selected a few short sleeve shirts and cute, yet comfortable skirts for school…

Here lies the question: She has obvious hair under her armpits and on her legs. She is only 10! At what age do you teach your daughter how to shave?

I put the question out there to other moms and this is what they had to say:

10% - Said it depended on the coloration of the hair. If the hair was dark… yes, teach her to shave now. If the hair was light, you just bought her (and you) some time.

10% - Said take the daughter’s lead. If she is talking about it, it is probably time to pull out that pink razor. If she isn’t aware of it, don’t make a big fuss about it.

20% - Said that it depends on the emotional maturation of the individual tween; explain to her the consequences of her actions. The novelty will wear off within a few weeks and then you will have no choice versus risking the brutal taunting of your peers. Way out the consequences together then let her decide.

60% - Absolutely do it now, before the teasing begins or before she hacks herself. Remember those cuts you got when your mom didn’t let you shave when you really really wanted to?

Although, the majority thought it was urgent that we embark on the task of shaving, I went with the 20% margin… We sat down and had a heart to heart discussion about the natural consequences of both options. After we talked about it, she looked me square in the eye and said, “I will wait!”

I met her decision with respect…. But, explained that if she were to change her mind at ANY TIME that she should let me know so I could teach her the proper way to shave… (I still cringe at the thought of the gashes I had way back when).

In the mean time, I am going to head over to the local library and look up a few books a twitter-mom recommended on early puberty and developing.

Early Puberty in Girls

Care and Keeping of You

Here's Lily

The Body Book

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