Archive | April 2013

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 “The Thing about Autism”

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

“You find yourself at the center of a huge debate. You’re 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’re living the thing most families fear. You’re the brave one, the resilient one, the courageous one, the one doing something she or he (but mostly she) says she can’t 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.”

 

My comment to your post 🙂

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’t 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.

I Wish…

I wish I could handle working outside of routines better. I’d like to be less rigid and more relaxed in my days. Some days, depending, I can manage to do pretty well, but the bottom line is that I need to maintain a rigid morning routine. That is what works best for me. One simple variation can throw my entire day off. The phone could ring or I may decide to start the laundry before eating breakfast. Those very acts could cause to forget eating until mid-afternoon. I would have also forgotten vitamins and you can cancel my keeping a schedule for the rest of the day. My thought patterns become choppy. I start in a direction with a clear picture in my head and then the picture’s gone. What do I do now? I end up walking around trying to get the picture back, piddling all the while, but accomplishing very little. It’s just too hard sometimes.

In order for me to function at my optimum best, I must have a strict routine in the mornings…let the dog out, morning constitutional, vitamins, breakfast, put water on for coffee, go to my desk, work out today’s todo’s, drink coffee (I like to my coffee after eating), check email and then I can manage the rest of my day. If these things occur in order I have no problems with daily schedule and I seem to have more energy too. Otherwise, I am exhausted by late afternoon from spinning my wheels and getting nowhere.

I wish I could write better and faster. It would be great to sit down and crank out a few blog posts in a couple hours or write a few paragraphs for a book I’ve started. It would be nice to write those few paragraphs in less than half a day, but I can’t. It’s already taken me more than a couple hours to write this. What time will it be when I finish…if I finish. Will I get this posted today?

I constantly stress over the words I chose, spelling, grammar, humor, flow, continuity; I stress over everything. It’s a good thing I can’t wear out the “save” icon as I click it after every correction. Wait…typo…correct…click…saved. Okay…moving forward. It would be wonderful to write my thoughts as they sound when I speak them. People often tell me that I have a wonderful way with verbal story-telling, but you’d never know it by the way I write.

I wish I could plan meals a week at a time. Instead I ask myself the same question every afternoon, “what’s for dinner?” Frequent trips to the grocery store, multiple shelves of cook books and I still can’t seem to get a dinner plan going. I’ve solicited the help of my 13 year old who always knows what kind of protein he wants, but does not really care about the rest. That helps some, but now I have to figure out what to add to it. We certainly can’t live off protein alone. So…I stand in front of the refrigerator and then I stand in front of the deep freezer. I peruse each shelf in the pantry and then I open all the cabinets. Sometimes I turn to cooking shows or look up recipes online. I’ve even called friends to ask what they’re having for dinner…they don’t know either. Looks like take it will be out.

I wish I could leave the house like normal people, not having to deal with the anxiety associated with going out and facing others.

I wish I could be different. I don’t feel this way often, but today I do. I don’t like to admit that I feel this way, because it hurts to know I feel this way. It hurts when I hear others say they feel this way too. I want so much for people to love who they are and their differences, even though I struggle to love myself.

I wish I could relax without feeling depressed. I wish I could casually do nothing for a whole day and not have guilt associate with it. I wish I had more energy. I wish it were a weekday. Oh well, tomorrow’s Monday and I’ll feel much better.  Weekends are a bit of a challenge as I tend to abandon my routines. It’s really simple…I’m rebelling against the need for them. The outcome is always the same, but I keep trying to break the mold.

I wish I could accept that this is how I am.

Greetings to You

Greetings fellow writers and readers! It’s so nice to meet you. I can’t tell you how encouraged I feel just knowing that you are out there. Thanks you very much for liking my posts and following my blog. I look forward to many wonderful exchanges with you in the future. My hope is that we grow together, learn from each other and support each other on our journeys.

Please post comments as they are the fuel that feed my fire. I am often inspired by the gems of wisdom, encouragement, questions and sharing that only you can give. Your comments are most precious to me because they allow me to see your point of view, to know how my words affect you and to experience you through your words. It is indeed a union most welcomed.

If you are not sure where to leave a comment, there is a box on the left side of the post that is black with white writing. In that box you will see the date of the post, categories and at the bottom a place to click to leave your comment.

I hope to get to know you all a little bit better as I take you with me on my journey. Thank you for joining me.
Respectfully,

Autism’s Love

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…they’re 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’re going to go over lyrics he’s not familiar with. Here we go…The 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…sing 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’s talking a little, responding to the questions. This is good…very 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…sing. Pride and joy erases all sadness. What a relief to see him smile and to hear him singing. All is not lost. Hunt’s 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’s 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… 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’s 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 “no” or “do not.”

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’s 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’t know if he’s going to sing or not, but I know for sure that he’s learning this song. I guess I’ll have to wait and see. I’m so excited. Okay, time to get dressed.

I’ll be sure to let you all know what happened when we get back…

10 Minutes of Awkward

I had a lovely time on the phone with my cousin this morning. We joked about the little things couples do to feel connected…things that add interest and spice to a relationship. She and her husband certainly know what works for them, after all, they are happily married and have been for almost 30 years. They’re the poster child for the quintessential partnership that I think most couples intend to have but seldom achieve.

So how do I explain to her what relationships are really like for me?

How do I convey the level of discomfort I feel when having to share my space for long periods of time. I can hardly adapt to having overnight guests let alone sharing my space with someone for the rest of my life. Okay…perhaps not the rest of my life, but not even for the next couple years. It’s not the same as living with your children. They are a part of you and innately have the ability to understand you, to learn your likes and dislikes as they develop their own. There is a bond between mother and child that space and time cannot touch. It’s totally different when taking on an outsider, your partner, who is not as connected and has no clue about your needs or you not knowing how to convey those needs. How would I have explained to my husband that I needed to have a separate bedroom or my real desire was to have him as a neighbor?  I did not realize these things until after marriage.

Should I be completely honest and say how much I hated being married, not just to my husband, but in general? How I hated almost every aspect of marriage, pretending to be happy while cohabitating with someone else, always being around people at work and at home. It would have been so much better if I had my own space. It was very stressful trying to cope with endless social events between both families which were excruciating at best. Those who knew me well noted the number of gatherings we hosted and realized it was highly unusual for me. They’d often point out my obvious discomfort. I was exhausted and there was no refuge outside of sleep which was often interrupted by husband’s carnal needs. I eventually retreated from husband and friends. I know they felt abandoned and I am sorry for that, but I had nothing left to give. I needed solitude.

As for something special, I pretended to love the flowers that he bought because it made him feel like he was doing something special. He could not understand that I hated cut flowers. They’d just die and stink and I ended up with a surplus of vases stuffed into a back cabinet. I guess he thought I liked flowers because other women like them. That’s as silly as thinking all females like pink. Why? Is it because someone out there made pink the universal color for femininity? Just for the record…I hate pink too.

I’m not sure what to do to appease my distain for romantic relationships and doing the little things to spice them up. I cannot explain how agonizingly awkward it is to hold hands or to snuggle which I had never done prior to marriage and had no clue how to do. This was never a suggestion of mine. But I would try to appease my husband when he requested snuggle time. Do I put my head on his shoulder or his chest or perhaps on his arm? Where do I put my arms? Should my arm go under me or in between us? The other arm feels weird. I don’t like the feel of his arm around my shoulder or the sound of our clothes rubbing together. Physical romance is far from my mind. There is nothing comforting about this exchange. I am frustrated and my hands are balling into fists. I can’t breathe…we’re too close. I excused myself and went into the living room. He follows me and wants to sit next to me and watch TV. There’s no escape.  I just want to be alone and to read my book.

What do you need to be your best in a relationship?

There are many books, magazine, movies, blogs and the like addressing this subject. I’m not sure if these things are a help or a hindrance. My idea of the perfect relationship is based on having a cohesive cerebral existence with my partner and a willingness to listen to each other’s needs. It is finding a way to communicate those needs effectively and respectively in a language that each partner can understand. Our love, communication, commitment and even sex should extend beyond the boundaries of flesh. Perhaps that is why so many of us need other things to make our relationships feel special. We do not understand the deeper levels of connection. Perhaps we are merely filling a void with ritualized practices deemed necessary because they can creating finely woven threads of purposeful colonization between partners, but on the other hand, can imploding into an emotional vortex contingent upon one’s perception and reception of such carefully orchestrated events.

Obviously I don’t have the answers to many of these questions, but I do have a better understanding of my needs and what I have to give. Who knows, maybe someday I’ll be willing to try it again. But don’t get your hopes up dear cousin. I suspect you may already have some prospects in mind. Just know that I am not ready, but the possibilities are there.

I will no longer give into the occasional 10 minutes of awkward. Instead I will continue to improve my ability to communicate my needs and an ability to listen to the needs of others. And hopefully I can have that special relationship where we both find it important enough to develop creative ways to fulfill those needs.

Coping With The Holidays

Looking at your child’s life in the long term; wouldn’t it be better for them to know how to cope with change, rather than having to endure countless meltdowns?

Our children need to be able to find an emotionally comfortable place in a world that is not going to cater to them or their unique needs all the time. Starting to work with your child, as early as possible, on flex routines will make transitioning into holiday and other special events much easier over time. Don’t let your precious ones diffuse holiday spirits. Give them the skills they need to enjoy and even anticipate joyful occurrences in their routines. Our children have the ability to anticipate the good things in life. Let’s make it a little easier for them. All they need from us is our patience, lots of repetition and a little ingenuity to smooth out the rough spots.

As you are setting goals for your child, anticipate needs as they grow older and how they will have to navigate themselves in the world, as it presents itself to them.

I am grateful for the medical staff that took such good care of my child during his early years. Even though, admittedly I’ve taken their advice with a grain of salt. There are those occasions when you voice a concern and in return you are offered a textbook remedy that just won’t work in the long term. What appears to be just right for the moment ends up causing other developments later, leaving you in a lurch. Don’t get me wrong, it’s good to listen to the advice of your child’s medical staff and therapists, but add your own knowledge of your child and a dash of common since into the equation.

It troubles me to see children having difficulties adjusting during the holidays, but who can blame them.

After all, lights are twinkling, music’s playing; people running in and out of the house; pretty things you can’t touch; loads of sugary goodies to munch and then…Santa Clause falls into your house.

My family celebrates the Christmas holiday a little different. Our efforts are not so much to give and receive gifts, but being a gift to others as Jesus is certainly the greatest gift to us. And then, there are some that like to celebrate Christmas focusing more on family traditions, whatever those traditions may be. In any case, there are ways to help our children cope with changes in their routine during the holiday season.

As a general rule, we have routines that are what I call, “flex routines.”

A flex routine is pretty simple. Have your routines in place, but make changes starting off with 1 or 2 small things and slowly increasing frequency and variety of changes over a period of time. Whatever is comfortable for your child. This will help them develop the skills to find comfort in their structure set while anticipating possible change and adjusting to change more readily.

Allow your child to have a sense of involvement in your day to day and special plans.

My son and I enjoy going out with friends and family; this was something he was accustomed to. But, when it came to having guests over for dinner or just to hangout for awhile; my son was much less receptive. We rarely had company unless it was therapists, friends for play dates or something having to do with my son’s needs. Sometimes friends would stop by unexpectedly for a visit; they were often greeted with a barrage of grunts and little things done to draw all attention to my son. This would sometimes make me and my guests feel uncomfortable. You don’t want to find yourself trapped in a world without social outlets for yourself as well as your child.

I honestly did not consider how my son would feel about my having unexpected guests, knowing that he was used to being center of attention. I had to come up with a way to flex our social routine. How did I do that? Well, I started by making a simple story board that had a picture of our home and pictures of some of the rooms in our home. We cut out pictures of people that we knew and people in general; together we placed the pictures on the story board. It was like a game at first, which was great, it kept him engaged. We would then make up stories about people coming to visit us, with and without children and things that we’d like to do. This practice made the difference in his transition to our new flex routine, enjoying guests in our home; even his ability to share our guest’s attention with me became easier.

Also, with a few simple tweaks, you can modify this practice to include events planning, such as parties or outings. Simply place pictures of people in general, yourselves or your guests, if available, on a wall calendar. Create a dialog about the event and when it will happen. Your child will be able to relate to the visuals which make the event more tangible for them. Now, there are no more surprises. Your child will know what to expect and may look forward to planning future events with you; especially for this up and coming holiday season.

You now have a creative tool to make transitioning from regular routines to the planning of events and the inevitable unplanned events, go a little more smoothly for both you and your child.

Take your time, be creative, enjoy your child and allow your child to enjoy you.

Earliest Childhood Memory

I am diagnosed with Asperger’s Disorder, which is considered to be a form of high functioning Autism. Psychologists say my Asperger’s is mild due to skill set and coping abilities. One of the things that made me aware of differences early on is an ability to recall unusually early childhood memories and an ability to communicate these memories in rich detail later on.

Research: I find after years of personal research the average person’s early memories “typically” start between the ages of 2-5 years. In some cases, memories may start even later if there is early childhood trauma. There have been subjects claiming to have little or no recollection of their youth before the ages of 9-11 years. This being said, those same subjects report having some scarce recollections of shadowy events, but do not seek clarity of memory, understandably so.

Since receiving my diagnosis, I began seeking out individuals on the spectrum (Autism, PDD-NOS, Asperger’s Disorder and High Functioning Autism) to pose my conundrum. So far, it has been a mixture of the “typical” response of 2-5 years alongside a small grouping of individuals who are noted for having early childhood memories that span as far back as 9–18 months of age. This is the first time, outside of a closely related family member that I have spoken with individuals having childhood memories before the age of 2.

In my case, it was during my pre-adolescent years when I first recalled memories going back as far as 6 months old (approximately). Those memories are as vivid today as they were when I first recalled them. My earliest memory is of my mother changing my diaper. She held my feet up to remove the diaper, cringing a little; she quickly removed it and began wiping me clean. I cannot recall an offensive odor. Perhaps I could smell the odor, but did not find it offensive at the time. My mother’s reaction is the only indication that there might have been an odor associated with my diaper.

Observation: When my son was an infant, I made a mental note of his reaction or should I say lack of reaction when changing a heavily soiled diaper and/or emptying his colostomy bag. He did much the same as I did…cooing, grinning and waving his arms which I gladly reciprocated. He did not react to the odor. And when I’d crinkle my nose and sing the “stinky dink” song, my son would simply grin and drool even more.

An infant’s lack of response to his/her own bodily smells appears to be a typical occurrence as observed with my son and other infants.

My diapers were white and made out of cloth. Mom folded the cloth into a triangle and then placed it under me. She used pink bunny diaper pins. I recall her using yellow duck pins as well. I found those diaper pins, many years later, in a little gold colored box, neatly tucked in a drawer. I can also recall my right arm resting on a white container that felt very cool and had a smooth yet soft granular feel to its surface. The tactile feel of the soft granular particles on that smooth cool surface were euphoric. Mom took the item from me and I could see something written on it…Johnson and Johnson’s.  Of course, at that time I did not know what the words said, but knew exactly what the words were when I recalled the memory.

What is your earliest childhood memory?

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