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Autism’s Love: Making Connections

I am feeling very proud of myself right now. I’ve been working on my new facebook page Autism’s Love: Making Connections and launched it 4 days ago. My dream is to connect with special needs individuals and communities from around the world. I hope my page will be a fun and informative place to visit and share resources. I don’t know about you, but sometimes I get caught up in my own little world, always focusing on the tasks at hand. It’s good to take out time to see what is going on in other parts of the world and to see how others are dealing with their individual special needs. I love learning about different kinds of resources. Diversity is key for me. I’ve always loved learning about people and their cultures and now I’ve created an avenue personally connection to me to do so.

Welcome to my new obsession. ūüôā I hope my new page enlightens and inspires you.

Autism’s Love: Making Connections

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Good Mama Karma

Does anyone have trouble teaching their spectrum child how to throw away empty containers when they are done?

About two weeks ago when planning for a shopping trip I neglected to get my son’s goldfish shacks. Well…I could take this as a bad mommy moment, but I am not responsible for my son’s snack cabinet…that is HIS responsibility.

I have tried on several occasions to teach my son to throw away the empties. I’ve even taken measure to walk him through our recycling process so he would know how to properly dispose of empty boxes and such. Of course that was all for not, because he had not yet processed that he should discard the empties to begin with. As it were, my “Good Mama Karma” (my newest catch fraise) offered up the perfect teaching opportunity. Sooo, as any good mama would do…I left the empty right where it stood. Days had gone by and I noticed little signs of mild disharmony. A little red snack bowl left on the kitchen counter…alone and empty. Hmmm, has the child been perusing the kitchen for his favored snack? I checked the cabinet and the empty was still there…just a little shifted. I leave it… A few more days pass and it is time for another trip to the grocery store. This time I ask my son if there is anything he can think of that he wants from the store. We go…he indicates nothing…okaaaaay. Later that night I hear my son growling in the kitchen. He’s had enough…(giggle giggle). Wait…let me translate my son’s growls for you, “What measure of mutiny has befallen me that I am STILL not able to find a reasonable snack to my liking IN…THIS…HOUSE!!!” Well…that’s what it sounded like to me. Opportunity has knocked…loudly. I seized the moment and took great delight in explaining to my son the practicality of disposing of empties once again and even took him through the recycling process in order to paint a complete picture. I think he’s got it this time… I’m gearing up for another shopping trip soon and guess what I found…a properly disposed of empty goldfish container. Bravo kiddo…job well done…

Thank you, Good Mama Karma ūüėČ

No Words

His Stare

He stares into your eyes.

Searching you…reading you.

Feeling the pulse of you,

Energy surrounding you,

Embracing you.

This is how he makes sense you.

472

He turns away.

Lost in thought.

A gentle presence,

and quiet demeanor,

Strength of inner being,

 Flowing in expression and meaning.

No words are needed.

They…Them…Us…Me

What’s that noise?

What noise?

Nevermind.

Where is it?

Find it!

Here I am.

It must be stopped…

Destroyed.

You want to destroy it?

Find it.

Wait!

There it is…

It?!

Don’t you mean who?

Who?

Yes…

A little girl,

Girl…

Over there.

Where?

There…

I am here.

Can you hear her?

No…

Can’t you hear?

No…

Listen…

NO!!!

We’ll destroy it.

Why?

We loathe it.

Why?

Not perfect.

Tear it apart.

Put it together.

Is she alive?

No…not really.

 

Yes I am.

Look at it!

Hideous, monstrous…grotesque,

A real life Frankenstein.

People will run and scream.

Don’t say that…she’s beautiful.

 

Retched!

Imperfect!

Undesirable…Unforgivably…Useless!

Worthless!

Abomination!

Not good enough.

Not like us.

Send it back.

Back to where?

We don’t care!

 You can have it.

But she’s yours.

We don’t want it.

But she’s here.

No it isn’t.

I’m still here.

We’ll get another.

Let her stay.

It’ll be better.

She’ll be good…I know she will.

We don’t want it.

Mommy…daddy?

I Get So Frustrated!

Writing about myself is one of¬†the hardest things I’ve ever tried to do. Yet I can’t stop trying. I need to get my words out, if for no one¬†other than¬†myself. I get so frustrated when¬†reading others blogs.¬†I love to read them and enjoy the content of their posts, but I find myself getting lost in envy¬†over their fluidity of¬†total expression. I¬†wonder, do they struggle like I do? Do they sit at a little wooden desk and fret for countless days, months and hours…agonizing over¬†every word, writing and re-writing…walking away and returning?¬†Whenever I’m¬†not in front of my computer I feel like I am about to burst at the seems. There is so much that wants to come out. Why is it so hard?!

Just when I think that I’ve figured it all out and am ready to open¬†up the¬†flood gates I go dry again. Where is¬†inspiration? Isn’t it enough to live the story that I want to tell?¬†My words¬†feel emotionless¬†and sterile. Yes, that would best describe it.¬†Perhaps I’m trying to hard. Perhaps it just me and my disconnection to life. My mind won’t allow me to feel the fullness of my emotions. I guess it would be too much. Maybe I should just close my eyes and breathe… All I can¬†see are words floating around in space…taunting me…haunting me. Memories flash before my eyes, yet I still feel nothing. I think I want to cry and scream, but I can’t. There’s nothing there…

I looked into the mirror once and saw a women mentally bludgeoned. I’ve been violated in every possible way. My spirit battered, broken¬†and left for dead. My girth increasing and decreasing…increasing and decreasing…increasing and decreasing… I am OBESE!! I am UGLY!! I am UNWANTED!! I am UNLOVABLE!! There’s no escape. I’m going crazy, I need to release. Please God help me!!!!

I can walk through a house of mirrors and never see my own reflection. Conditioned to ignore the obvious. I live an illusion. I always have. Where there should have been love…there was none. Where there should have been protection…there was none. Where there should have been comfort…there was none. Where there should have been laughter, joy, fun, adventure…there was none. I have been imprisoned by¬†life, my parents, my conditions and even my own mind… Flawed from head to toe…inside and out. I am queen of the misfits…discarded like a broke Christmas ornament. I want to see beauty, but I can’t. I know beauty lives¬†inside. I want to be beautiful on the outside. I can’t see myself because I don’t want to. I don’t want to¬†face the ugly truth. My friends, they tell me I’m beautiful, but they are just being kind.

I crawl out of my hole and begin to pick up the pieces. I try to make sense of what’s left of my life. I put on the face of strength for my child. I don’t want him to see me broken even though he already knows that I am. You see, he knows first hand the pain that is mine. When he was a toddler we used to visit my parents on the weekends. It would take most of the day for me to manage the thought… Hours of crying and vomiting and then slowing getting ready to face the beast. My dad, never satisfied, would always criticize me. One day it had gotten so bad that my precious little one ran over to me, jumped¬†onto my lap¬†and wrapped his arms around my neck…screaming and crying. He turned to look at my dad as if to say…leave my mommy alone. I hugged and kissed him and told him it was okay. We went home. There were many occasions like this, but I dare not miss a weekend. My parents insisted that we break bread together every Saturday. My mother¬†still presenting¬†the face¬†of perfection. Still perpetuating the lie.¬†Will it ever stop?

My parents are gone now. Would it be wrong for me to say that I am grateful? Should I feel guilty for feeling this way?¬†My son can since that I am still haunted by my past. It is on those days¬†that he hugs me and rubs my face to ensure me that it’s okay. I look at him in think how precious he is. He is perfect.¬†He will never know the beatings, ridicule, disconnection, blame and¬†hate that I endured. If only I too had been so¬†precious to my parents.

I relish the joy and peace that we have in our home. My son will never have to question if he is loved. He will never¬†feel the pain¬†I felt. I thank God for that. I thank God that he made me strong enough to break the curse.¬†I thank God for the blessing of my son and the gift of motherhood. Thank you God for showing me¬†what parenting should¬†be… How love should¬†feel… What peace is…

It is because of my love for my son and my quest for healing that I take this journey. I want my son to have the absolute best of me. I want to be free. Not stuffing my pain, but releasing and letting it go…completely. That is my goal.¬†And I will achieve this even if it takes me one letter at a time…

 

Copy of Me and Hunter 2 Favorite

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In Honor of Mikaela Lynch, Drew Howell, and Owen Black and thier family and loved ones!!!!

Little sparrow stay with me,

Don’t drift away so soon.

I need more time,

Though you must go on,

Stay with me little sparrow stay.

Everything can change in a instant.

You being here with me,

Seeing your smile,

The twinkle in your eyes.

I watch you twirl in the sun.

So many words left unsaid.

So many sights unseen.

I think of what should have been,

Could have been,

And now will never be.

If I had one more chance,

To tell you everything,

I would spare no breath,

Would never rest,

To ensure I get it all in.

So go my precious one,

It is okay.

Our time together at it’s end.

We will meet again.

Until then,

I’ll be listening for your laughter in the wind.

His Eye Is On The Sparrow

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A Flash Blog for Mikaela Lynch’s Family

Please share this information with all of your blogging buddies. I am planning on participating in¬†a flash blog¬†in support of Mickaela Lynch’s family. Read below for more information. Thank you in advance for all of you who wish to participate. ūüôā

Zoey Roberts Au shared Adventures in Extreme Parenthood‘s photo.
Adventures in Extreme Parenthood
Please join those of us in the autism & special needs community on Monday, May 20th in writing a blog post (bloggers) or a Facebook status update (non-bloggers) in support of Mikaela Lynch’s family.
We want to flood social media with love for the Lynch family and those who have suffered similar losses — under the cruel scrutiny of media and those who judge without knowing of what they speak.
If you would like to be a part of this movement please share this status & help us get the word out!
Please join those of us in the autism & special needs community on Monday, May 20th in writing a blog post (bloggers) or a Facebook status update (non-bloggers) in support of Mikaela Lynch's family.</p>
<p>We want to flood social media with love for the Lynch family and those who have suffered similar losses -- under the cruel scrutiny of media and those who judge without knowing of what they speak.</p>
<p>If you would like to be a part of this movement please share this status & help us get the word out!

Comment to a Post Written by a Friend

Sharing my thoughts with a friend and all.

The link below is to a heartfelt and eloquently stated post written my friend Seventhvoice.

http://seventhvoice.wordpress.com/2013/05/01/love-me-or-hate-me-this-is-my-response-to-a-comment-that-to-me-tipifys-the-worst-aspects-of-the-autism-community/

Love me or hate me this is my response to a comment that to me tipifys the worst aspect of the autism community

An exert:

This is how the response started;

‚ÄúWhile I acknowledge that many parents have fought the good fight‚Äď and continue to do so‚Äď on behalf of their autistic children, it is also sadly true that many autistic children suffer a great deal at the hands of their parents. Some of that suffering is due to societal problems, and some of it is due to neurotypical parents misunderstanding or being unaware of their autistic child‚Äôs needs.‚ÄĚ

Ummmm‚Ķ.. I‚Äôm sorry but I simply do not believe that children with Autism are suffering from having ‚Äúmisunderstanding‚ÄĚ parents.

_______________________________________________

I see where you are coming from¬†in most of what you’ve stated in your post, and agree with you in that respect, but I¬†have to¬†agree with the above aspect written by the commenter on your post as well. It is my experience and observation¬†that¬†NT parents¬†can¬†sometimes¬†misunderstand¬†or are unaware of a need the child is trying to communicate. Even if the need is understood, the NT parent may not know how to address it. They can go to other NT parents, friends, family¬†or even¬†professionals in the field, but that does not guarantee¬†they will¬†receive good council. These parents¬†are doing their absolute best and are at times¬†still¬†coming up short.¬†This is a terrible burden to bare. It is not any fault of theirs, but of society for not acknowledging that there¬†are resources¬†readily available if asked. We on the spectrum offer an honest,¬†unprocessed,¬†matter-of-fact point of view, but society deemed¬†us unintelligent and incapable. We were silenced. What would be the¬†point in their¬†listening¬†to¬†us? We¬†are but¬†lab rats to them.

It is our duty to education each other and¬†the world about our autism. We don’t need these third party entities or their science¬†to speak for us…we have our own voice and have the greatest ability to create our own science…¬†Thanks to science for indicating that we exist, but now it’s time we¬†take the reigns. It’s¬†time that WE are heard!

Who’s to help the parent that¬†reluctantly admits¬†that they can’t always¬†understand their child’s cues?¬† There are countless indications across the board that cues¬†are¬†being misinterpreted. Listen to the voices of the¬†your kinsmen¬†who are on the spectrum…¬†You will hear the horror and dismay¬†of what it’s like to be¬†accused of¬†undesirable behavior, being lazy, being¬†irresponsible, lack of interest and so on…

NT parents, in the interest of wanting to better connect to their child are joining autism groups to gain further understanding of their child and how to parent them. They seek support from those who know the pleasures and the challenges of parenting a child on the spectrum. There are also parents thought to be NT who later find they too are on the spectrum. It is important that we band together and continue lifting our voices in groups and as individuals. This world can be a better place for us all.

I speak to you from personal experience.

In my childhood I was completely misunderstood. My behaviors and abilities were undesired by my parents. For being smart and having a love of sharing information I was condemned a trouble maker and a nuisance; for stemming, slow response to questions, lack of eye contact or too much eye contact and a multitude of other behaviors I was yelled at and/or beaten.

It hurts¬†being slapped across the face because I stare blankly¬†when asked a question I am¬†struggling to process… and then…¬†having to process why I was slapped…¬†which¬†leads to more slaps and yelling.¬†I shut down…it¬†is too much. I just stand there and take the abuse.

Perhaps there are parents that¬†can only see themselves in the role of¬†parent…. as if¬†in¬†an altered state,¬†no longer¬†aware of what it¬†is to be¬†a person.

It is as if becoming a parent makes one…godlike.

In a moment of anger, a parent may¬†react harshly¬†if they don’t¬†immediately get the¬†response they require.¬†It is assumed the child is being disobedient.¬†Has this¬†parent forgotten what it is to be a child?¬†Is there any wonder as to why¬†some parents¬†have¬†difficulties relating to their child let alone relating to their child¬†on the spectrum?

Autism¬†is on both sides of my family. But that did not make¬†childhood any easier.¬†I suspect both¬†my parents being somewhere on the spectrum;¬†mom disconnected and childlike and¬†dad a mathematical genius who hated higher education and all forms of authority. They were unfamiliar with the word Autism until my son was diagnosed.¬†By then it was too late for them to understand me or even care to try. The deed was done…I’m¬†invisible. All energy and hope are now placed on my son.

I could go on and on about this subject, but I will end my discussion with this….

I am an autistic parent who is raising as autistic child. I know the struggles and wake up ready for the fight everyday. I know the joys, triumphs and freedoms of being a parent who has an unspoken understanding of her child and I know the beauty of sharing the same corner of the universe with him.

There are some differences in the way NT and Autist parents experience their autistic child(ren). There are some differences in our ability to understand and our approach to dealing with the day-to-day challenges.

And yes, there are children that¬†have been¬†hurt by parents who’ve misunderstood.

If ever there were¬†a call¬†for change¬†in the level of awareness and understanding…it is now.¬†If ever there¬†were¬†a¬†call to revamp the direction chosen in taking the measures to achieve higher levels of awareness and understanding…it is now.

We as a whole we will have to figure out how to bridge the gaps in communication between all groups involved (NT parents/Autistic parents/Autistic Individuals/Autistic children and teens/Siblings, spouses and friends of autistics/Professionals).

All groups need to be acknowledged and heard because all groups have their own perspectives.

Coping with Overstimulation

One of the more commonly defined links to autism is the many differences in sensitivity to stimuli. There are some of us who experience extreme sensitivity to many things where other’s may experience varying levels of sensitivity to certain things like light, sound, temperature, textures, smells, movement and the like.

There are those who have heightened awareness of their surroundings, not notably uncomfortable for some, but may be over stimulating and even painful for others. I imagine for the NT brain the receiving of information is much less noticeable with little to no thought or even recognition of the process. But for those who are on the spectrum it is quite different. Information flows into the brain and is systematically compartmentalized into varying categories and subcategories. This can be felt. It’s like having a bunch of feelers with sensors shooting out from your body and the sensors are touching, feeling and absorbing information from everything, event the particles in the air. This is a constant sensation and can be quite distracting. It makes it difficult to focus, sleep or even be still.

Image what it feels like to receive input from everything around you at all times. Some of the input can come across as light and benign or disturbing, disruptive and even jagged like broken glass.

Humming or some other form of stemming behavior helps with the effects of overstimulation. It counteracts the discomforts of being overstimulated lending itself as a way to control informational flow. That way we are able to receive the flow of information and still be able to focus on an object, task or the sorting and purging of thoughts at the same time. When this happens it is as if the flow splits into conscious and unconscious. The unconscious flow is the constant and the conscious flow is merged into the constant, so one can put more focus on whatever one is consciously doing or experiencing with less distraction from the unconscious informational flow.

No matter what our cognitive ability or what level of functioning we are labled, our minds and bodies are always receiving information.

There are some of us who need physical help to calm from over stimulation like pressure applied to different areas of the body such as the arms, back, shoulders, base of neck and head. There are assistive technologies that can help with this such as weighted blankets, vests and bands. Bands are versatile because they can be placed on different body parts such as ankles, wrists or even worn as a headband. Some autistics may respond well to massage or brushing of the body or limbs. It all depends on the individuals need and what is most comfortable for them. Physical activity is another possible way to help like walking, stretching, jumping, running or carrying heavy items for short periods of time. All of these thing help to calm and center.

Lighting is also very important. It is crucial for me to be able to control lighting in my home because my sensitivity to light varies. I have also given this option to my son so he is able to control the lighting and light source in his room. He changes the lighting in his room several times a day depending on his need. He may start the day with curtains open. Natural light seem to help him be more alert. When he is settling into stemming mode he like a lessor light which he gets from a clip-on desk lamp. The lamp has an adjustable neck so he can angle it in any direction to get the desired amount of light. When we return from outings or when guests leave, my son likes to use either of his lava lamps which gives his room a worm amber or deep pink glow.

Sound is also something that can be soothing or excruciating. If silence does not seem to be calming and too many noises over stimulating you may want to experiment with other sounds such as a low snowy sound (like the sound made by old analog TVs when the station goes off) or perhaps the sound of slow flowing water. Music may be a little soothing. For some the sound of instrument and voice may be a bit much, so you may want to separate the two and try either all instrumental (one or more instruments) or a calm soft A Capella (one or more people singing).

I cannot speak for all of us. Each person is different and their experience is their own. I am one small voice on the spectrum.

Thoughts about ‚ÄúThe Thing about Autism‚ÄĚ

Partial Repost from http://seventhvoice.wordpress.com/2013/04/29/the-thing-about-autism/

Originally posted by Kyra Anderson 5.0 http://kyraanderson.wordpress.com/

 

The Thing about Autism – Exert

‚ÄúYou find yourself at the center of a huge debate. You‚Äôre the new black, the hot topic, part of a growing epidemic, an oft-cited statistic that grows at alarming rates or not at all, depending on who is doing the reporting. You‚Äôre living the thing most families fear. You‚Äôre the brave one, the resilient one, the courageous one, the one doing something she or he (but mostly she) says she can‚Äôt imagine herself doing, performing some super feat of parenting, loving with super patience or super understanding or super tolerance while she races home to a child that skips up the path of maturation and competence and independence and connection with nary a nudge from anyone.‚ÄĚ

 

My comment to your post ūüôā

Kyra 5.0, your words are a beautiful homage to parenting a child on the autism spectrum or having other special needs.

I re-read your post several times and had a little difficulty processing it. At first I thought how bold to brag on one’s self… Truth of the matter, parents need to be able to toot their own horns sometimes.

I work diligently with my son, but only see it as a labor of love. I don‚Äôt think of myself as a hero or supermom or feel that I am particularly brave or resilient. I am who I am and I do what I do because I love who I love with all that I have. And that’s it.

There are many of us who go through life not giving any thought to what we do everyday. It takes wonderful people like you, who bring us back to the level and make us feel like we are doing something right. Thank you for writing such a beautiful tribute to all of us who spend our days and night loving and raising our precious autist/aspie kids.

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