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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

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

10 POSITIVE TRAITS OF ASPERGER‚ÄôS

I find it fascinating that we on the spectrum are considered to be the strange ones.

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.

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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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.

Song and Sniffles pt. 2 (Repost)

We are back and I am eager to share what happened in Voices today.

We were just a few minutes late. Hunt runs into the class. The floor is wet, so I tip toed behind him hoping not to slip. The children are already signing the greeting song.  I take a seat not too far from Hunt. He likes me to be near but still far enough away that he has his own space or so it seems. I wait and I hope that Hunt will sing a little today.

The mood in the room is different. Oh, I see the founder of the group is here. That may change things a bit. Hunt is not accustomed to seeing her during meeting times. Even though he knows her, he’s still not used to her being here. The other therapist must have an appointment or is out sick.  That’s okay we’ll just have to adjust.

I look¬†around the room and¬†notice the chalk board where the lyrics are written. The lyrics‚Ķthey‚Äôre different this week. Oh no, they changed from the chorus to other lyrics today. Hunt worked so hard to sing the chorus and now they‚Äôre going to go over lyrics he‚Äôs not¬†familiar with. Here we go‚ĶThe piano sounds and the therapist begins to sing. She sings one line and then the children sing. Hunter does not open his mouth. She sings another line and again the children sing. Hunt still does not open his mouth. I can tell by the way he turns his head that he recognizes the music, but¬†he¬†wont¬†attempt to sing. I know it’s difficult for him to process new tasks, but I hope that¬†may give it a try.¬†I leaned forward and touched him on the shoulder hoping the prompt would encourage him‚Ķsing boo-boo. Instead he begins to wipe his eyes. He turns to me and I can see that his eyelashes are a little wet.¬†My heart breaks. How sad this is, to see Hunt take the initiative to work so hard practicing the chorus only to be the caught completely off guard.

My heart sank lower and my head dropped. I felt myself wanting to be angry as I hold back the tears and I tell myself there’s nothing to be angry about. There is no fault here. I look at Hunt and I wonder if he feels bad that his friends know the song better than he does. I shake my head and try not to impose my thoughts upon him. It is enough to know he is sad. I am silenced. So I put on a smile and continue clapping and encouraging all of the children to sing. My son turns to look at me again and I smile at him. I know he can see the sadness in my eyes. I’ve got to get it together and be strong. This is not the end of the world.

A few minutes go by and I see¬†Hunt¬†starting to perk up. He‚Äôs talking a little, responding to the questions. This is good‚Ķvery good. Another song begins…but wait…Hunt’s mouth is moving…he’s singing. Yes!!¬†I hear his beautiful voice among the masses. Sing boo-boo‚Ķsing. Pride and joy¬†erases¬†all sadness.¬†What a relief to see him smile and to hear him singing. All is not lost. Hunt‚Äôs hard work is not in vein. He sang today. For the first time ever, my son sang with other children. Today¬†has been a very good day. ¬†

Song and Sniffles pt. 1 (Repost)

Today I’m seeing another leap in my son. He’s becoming so mature. It’s a little hard for me facing the fact that he’s growing up so fast, but at the same time I celebrate his accomplishments, his growing desire to learn more, try harder and achieve. This is monumental…

Hunt enjoys being in a music/speech therapy group called Voices Together. He seems to enjoy the group activity and is making friends, but reluctant to participate in the actual singing. Hunt loves every aspect of music and even shows an interest in learning to play a few instruments…drums, piano and guitar for now. He’s the oldest in the group by a year or so and his general demeanor depicts a measure of boredom as I guess it would be with any teenager who’s not totally committed to the cause. Whatever the case, he seems to enjoy himself, so I press on.

Each semester the children learn a new song. This semester‚Äôs song is very long and a popular hit. Fortunately we are to learn the chorus, only. I bring the words home and find the song on YouTube. We listen and then I sing‚Ķ My son shows little interest as he usually does when embarking upon something new. It takes more than one exposure to something new¬†before he reacts to it. Well, unless it‚Äôs a food item he does not like. That is when I can expect the tale-tale wiggling of the fingers accompanied by a very clear and stern ‚Äúno‚ÄĚ or ‚Äúdo not.‚ÄĚ

I played the song several times, always encouraging Hunt to sing along if only a single world. He refuses, but does so with a sheepish grin. That tells me he’s receptive to my proposed notion, but will comply in his own time. There’s more school work to be done, so we’ll try the song again on another day.

Time for group again and as usual Hunt is eager to go.¬†He runs into the classroom and greets everyone and takes a seat.¬†The¬†therapist “K” plays her keyboard and begins to sing. Hunt¬†sits and listens to everyone¬†singing and he grins. Song recognition is wonderful, but I do so want him to sing a little.¬†“K” encourages Hunt to sing, but he only points and requests to play the piano. I clap and cheer at the end of the song and tell all, job well done. Hunt grins again and begins to clap. I am happy that he gets so much enjoyment out of this group. Perhaps one day he will sing along with the rest of his peers.

Today after finishing school work Hunt pointed to the YouTube icon and grabbed the clipboard having the words to the song we’ve been¬†practicing. He waited with anticipation for¬†the song to start and¬†was particularly interested in the icons I clicked. As soon as the song began to play, he grabbed a pen, started rocking and pointed to the words of the chorus that were in front of him. At the appropriate time he began to sing the chorus. Oh my goodness, he‚Äôs signing the song!! I stared for a moment and then left him on his own to process the song in his own way. He must have played that song 20 times. I think he sang for about 30 or so minutes. He worked so hard to sing as much of that song as he could. And he did exceptionally well I might add. He sang and sang and I shed a joyful tear. He sang until he was satisfied and then announced that he was done. We have another group meeting tonight. I don‚Äôt know if he‚Äôs going to sing or not, but I know for sure that he‚Äôs learning this song. I guess I‚Äôll¬†have to wait and see. I‚Äôm so excited. Okay, time to get dressed.

I‚Äôll be sure to let you all know what happened when we get back…

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