Tuesday, December 11, 2012

That Darn 4 Letter Word

Kids will surprise you with what they say. In my case it seems to have happened even when having a child who is severely speech delayed. Yes, another one of life’s little jokes.

Cooking, cleaning and reciting the Cat in The Hat from memory, I'm finishing up dinner and the phone begins to ring. Look at my little one holding his book and stemming happily. I hate interruptions when the mood is so peaceful. I turned to make a mad dash for the phone, rounded the corner of the breakfast bar and banged my big toe into the bar stool. In a moment of mind numbing pain I blurted out the “s” word and began hopping round the room. A few minutes passed when I noticed that my son stopped stemming and was looking at me with great wonder. Until that moment I had been very good about keeping my potty mouth clean. But, it’s okay, my little guy begins to giggle and all is forgotten. Little giggles always take the pain away.  

A few days later, we met with our new speech therapists. She was much nicer than the previous therapist and seemed to be very passionate about working with autistic kids. Our meeting went exceptionally well and Pooty was very excited about his new therapist. After the meeting, we moved into the kitchen for snacks and leisurely conversation. Pooty comes in and utters a word that sounds a lot like milk. In my haste I turned to grab Pooty’s sippy cup and clipped my finger on the cabinet door. Did I mention I can be a bit clumsy at times? This time I managed to be mindful not to say the “s” word. Instead I quietly said “shoot”. Of course, in true Pooty fashion, he tapped me on the leg, looked up at me with that devilish little grin and said, in a very clear voice, “No mama, shit…shit.” This was one of those classic moments when I didn’t know if I should crawl into a hole and hide or jump for joy because my child corrected me.

Have I corrupted my child? Such a smart little boy, why would he choose to master this word? Could it have been the entertaining element of my hopped around after shouting the “s” word into the atmosphere? Who would have thought…all the effort it took to get my son to utter any audible word and it comes down to only a matter of seconds for him to master the “s” word.

Word to the wise, my fellow patrons of parenthood…never take a child’s speech delay for granted, or else you too may find your little one staring into the bathroom mirror, practicing the “s” word…not to mention, with great emphasis on the “t”.

 Oh what a mother’s plight may be.

And so she kisses her child goodnight.

Thinking of all the fun things planned,

Hoping and wondering if she can,

Prepare him for all of life’s demands.

Sit up straight; don’t play with your food,

Be a good boy, try never to be rude.

What have I done that I’ve taught him this thing,

Hearing the “s” word and feeling the sting.

Will he ever know how hard I try?

Always teaching and preaching to reach for the sky.

I wish I’d never said that naughty word.

Instead I will work harder to be,

The example my son needs to see.

I will be more selective with my words,

To be sure they are thoughtful, encouraging and good.

In the meantime I will pray,

That my wee one tries not to say,

The new word mommy taught him that day.

And know that everything will be okay.

Getting Back on Track

Greetings everyone! It’s been some time since I have posted on this blog. I’ve been dealing with life as life has been dealing with me.

Sitting here today, I can’t help but to be thankful for having endured tremendous growth over the past few years and I am eager to share some of my experiences with you. I am working on a couple blogs at this time. Autism’s Love is my first blog. There have been several name changes while I’ve been thinking about the general format for this blog. My life is rich with many aspects of being on the spectrum. It’s hard for me to decide which angle to write from. Not only am I a parent of a wonderful child who is diagnosed with Autism, but I too am on the spectrum having been given a diagnosis of Mild Asperger’s Disorder.  I received this diagnosis later in life than most, but I am appreciative of this journey into a much needed search of self. I love this leg of my journey, figuring out how to navigate my new found freedoms as an Aspergarian while trying to making sense of my tumultuous past. I embrace myself, my child and the unknown. 

Still a bit undecided on a particular path for this blog, I move forward allowing my blog to take shape on its own. I’m not too good at pushing my ideas into a particular direction. It is best for me to focus on what life has to offer while waiting to see the direction my ideas decide to take. It might even be a surprise. Much like my art…pictures begin to present themselves to me as I put pencil to paper. I have no idea what the pictures are going to be until they completely reveal themselves to me. There are times when thoughts of completion are interrupted by the introduction of other components to stories revealed. What an exquisite exchange, waiting to see what stories my somewhat eccentric, vaguely whimsical, romantically inquisitive mind will come up with as I transform blank canvases into life, movement and expression.

The other blog that I am working on, Night Eating Syndrome is my second brain child. My greatest influence being the lack of information available about this particular eating disorder. I was diagnosed at the age of 19 by a wonderful doctor who saw many things going on with me and worked diligently to put me on a better path. Unfortunately, I went into denial about this disorder, but managed to address it periodically. Only after becoming ill many years later did I decided to take my diagnosis seriously. Fear of dying was the wakeup call that I needed.

 I hope the readers of Night Eating Syndrome will share their stories and personal battles with eating disorders of any kind. My hope is that this blog will be a safe place for sharing, learning, healing and support.

I have quite a bit on my plate to manage along with my regular day to day of being mom, entrepreneur and artist. Though this is a daunting task for me, I now know that I must commit all of my work to God to be able to succeed. As I write my blogs I am healing. I am regaining my authentic self by understanding self as I am, not by how others want to see me

Thank you for your encouraging words and support.

Love and light to you all.

Monday, April 30, 2012

AutismsLove to “I Wish I Didn’t Have Aspergers” = #AutismPositivity2012

Where do I start? I am often perplexed when I see statements such as “I wish I didn’t have Asperger’s” or “Autism/Asperger’s is a curse”. I wonder what could have happened to make a person feel that way. I hope I don’t come across as judgmental. That is not my intention. You see, I have lived a life filled with abuse. My parents did and said many things to me. I was bullied in schools, church and Girl Scouts by teachers, leaders and peers. I was even bullied by my hair dresser, who used to viciously yank my hair every time she combed it and tell me it didn’t hurt. A family member once pulled a friend of mine to the side to tell them I was stupid and naive. In all of that, I never once wished I was anything other than what I am. Of course I secretly wished for a new family, but never took the blame for what they chose to do to me.
I want you to know that you are someone special.
You matter.
Your opinions count.
You have a voice in this world.
You have a place in this world.
You are beautiful.
You are not to blame for anything wrong that someone else has done to you.
If you have been abused or are currently being abused, know that it is not your fault. It is the abuser’s choice that they do what they do. They have their own reasons and more than likely those reasons have nothing to do with you. Abusers live in their own hell and many times are unable to break the cycle of abuse. This is not an excuse by any means. There are no excuses for abuse. It helped me to know that my abusers were people that had deep seeded problems that had not been dealt with, so they chose to take it out on someone they considered to be weak, me. In all actuality it is the abuser that is weak. They are not strong enough to face their own issues. They are not strong enough to stop abusing and get help. They seek unconventional ways to make themselves feel better which is usually hurtful to someone else.
The most wonderful thing about being Aspie is...
Absolutely, positively outside of the box thinkers
Eloquent in expression, however we chose to express ourselves.
Life can be difficult, no matter what the circumstances. Embrace who you are and all the wonderful attributes you have.
It may help you to find someone that you can talk to, perhaps join a group on face book that makes you feel comfortable and safe; a place where you can share your feelings and experiences in a warm supportive environment.
Don’t give up.  

Monday, January 30, 2012

Don't Reduce the Criteria for an Autism Spectrum Condition in the DSM-5

I just signed the following petition addressed to: The American Psychiatric Association.

Don't Reduce the Criteria for an Autism Spectrum Condition in the DSM-5

WHEREAS . . . we, as adults and teens on the spectrum (as well as we, their loved ones) do not want to return to the days prior to the DSM-IV, when most of our (their) behavioral differences were thought of as character deficits

WHEREAS . . . the DSM-IV did not (as has been stated) financially drain clinical or government resources; on the contrary, the DSM-IV, in a big picture sense, actually saved money given the long-term cost of (a) children who if not educated properly would cost more in services later on, and who because of their appropriate education could be productive citizens as adults, and (b) individuals who by knowing who they were had their capacity for anxiety, depression, or anger lessened—thus decreasing incarceration and homeless rates and reducing their dependence on others to lead productive lives

WHEREAS . . . The DSM-IV did the world great good by broadening the criteria, thereby expanding our notions of behavioral pluralism and increasing the self-esteem of innumerable individuals: Furthermore, without the DSM-IV there would most likely not be anti-bullying campaigns; (given two wars since) the much-needed increase in attention to Post-Traumatic Stress Disorder; and a multitude of other, big picture improvements for us all

WHEREAS . . . autism spectrum diagnoses are not “over-diagnosed,” especially given our still-limited understanding of how these conditions manifest in women; and how many under-represented, economically-challenged communities (especially belonging to minority groups) still have not been properly evaluated

WHEREAS . . . the proposed changes to the DSM-5 contribute to the emotionally-destructive “competition of suffering” (between opposite ends of the spectrum) that the autism world was finally starting to back away from, wherein non-GRASP and non-like-minded entities often attempted to invalidate the seriousness of another’s experiences

WHEREAS . . . the DSM-5 has attempted to implement these changes in bad faith by releasing news thereof at a time when they had no outlet available to the public for receiving commentary

WHEREAS . . . the DSM-5 Committee’s autism spectrum experts seemingly carried no real expertise or experience with either (a) the end of the spectrum at risk with these changes, nor (b) adults; and we object not to the participation of these individuals but to the overall, and very poor composition of the Committee

WHEREAS . . . the DSM-5 Committee’s attempts at damage-control (including many statements of “Well, your child may or may not qualify, but don’t worry. Wait and see instead.”) only furthers our confusion over what their true motivations could possibly be in implementing such backward revisions

WHEREAS . . . the DSM-5 Committee is not beholden to, nor should they be guided by proven or unproven economic concerns whatsoever; that they should instead be guided solely by a concern over our mental and emotional well-being, which these changes dramatically threaten

THEREFORE . . . I believe that the proposed narrowing of criteria for an autism spectrum diagnosis will cause catastrophic and irreparable damage to (1) the future of innumerable children on the spectrum who need specialized education, (2) innumerable parents with children receiving specialized education, (3) innumerable adults on the spectrum who are receiving services under the current criteria, and (4) anyone on the spectrum needing to know that their behavioral differences are the product of wiring, and not personal defect. Don’t reduce the criteria for an autism spectrum condition in the DSM-5.
Link to petition:


Jackie Pilgrim