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Autism And The Art Of Conversation

17 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Every night, I give my older son George a piggy-back ride to bed. These days are numbered, of course. George is almost nine and he’s all arms and legs. Someday soon, he will too tall and heavy for me to cart around on my back. For now, though, I treasure these last days of being able to pick up my son.

We get to his room, where I dump him unceremoniously on his bed. He tucks himself in while I turn off the light, and then I lie down beside him. For the next few minutes, it’s just him and me, alone in the entire world.

We talk. I ask him questions. He answers them.

Who does Mommy love? She loves George.
Who does George love? He loves Mommy.
How do you feel? Happy.
Did you have a nice day? Yes.
Where did you go? School.
What did you do there? Math.

Always the same questions. Always the same answers.

I follow this ritual for the sense of closeness between me and my son, because it’s a comforting part of our time together. I also do it to help him practice the art of conversation. His verbal communication skills are worlds behind those of typical kids his age. He knows how to talk, how to make requests and the occasional joke. He is starting to make the odd remark for social purposes, and not just when he needs something.

But he does not know how to have a conversation. So I am teaching him.

When George was first diagnosed with autism, he did not know how to point. Over a period of eleven painstaking months, during which I followed the same routine every single night, no matter how futile it seemed, I taught him how to point. I still cry when I think of the first time I was rewarded with him pointing independently.

If I could teach him how to point, surely I can teach him how to have a conversation. After all, they are both forms of communication, right?

From time to time, I switch up the questions during our nightly routine, and ask him something else. When I do that, he never answers the question I ask. He gives an answer to the question he was expecting. I don’t mind. It just shows that he’s not yet ready to move to the next level. There’s no rush. I can wait. It will happen when he’s ready for it to happen.

It’s OK that he has memorized the sequence of questions and answers. Children learn to read in much the same way, rote-repeating sentences that they have heard many times, before making the connection with the printed text. There is every reason to believe that George’s relationship with conversation could evolve in much the same way.

While I’m helping him learn a skill that will be of value to him for his whole life, I am treasuring those nightly moments we spend together.

(Photo credit: Kirsten Doyle)

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Guest Post: Animals And Autism

15 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Guest post exchange day was yesterday, but really, with so many phenomenal bloggers in the same challenge, how could I pick just one? Today’s guest blogger, Sarah, focuses on an area very close to my heart: animals, their relationships with people, and how they can facilitate healing. She just finished her first year of the Doctorate of Physical Therapy program at LSU-New Orleans. She is  passionate about animals and children and plans on integrating animals into her physical therapy practice after she graduates.

As a lifelong animal lover myself, I am drawn to Sarah’s blog like a magnet, and am thrilled that she agreed to write for me. Today, she shares with us how animals and children with autism can have a very special bond.

When people envision their perfect life with 2.5 kids and a white picket fence they also usually include a pet in the picture. After parents hear their child given the diagnosis of “autism”, often the idea of having a pet is questioned. In general, animals definitely provide many benefits to their owners, but as Kirsten recently reminded me “If you’ve met one person with autism, you’ve met one person with autism.” So what works for one child or family may not work with another.

The cool thing is that there have been several groups that have seen a lot of positive effects in children with autism after interacting with animals.

Max is one of Austin Dog Alliance’s “special dogs” available for adoption.

Austin Dog Alliance has group social skill classes where they use dogs to teach children with autism and Asperger’s. Some of the topics touched on in these classes include verbal and motor skills, interacting with and empathy for others, and appropriate behaviors both in and out of the classroom. These same skills can be achieved with a pet at home. The child can practice speaking to the dog and learn to recognize and understand the animal’s non-verbal cues. In doing this they are maintaining eye contact, which some people with autism struggle with. They can also learn to care about and for another living creature. This lesson can then translate to their interactions with other people.

Horse Boy Foundation brings kids in contact with horses to help them through what they call a “simple 6 stage process”. They’ve found that allowing kids to lie down on a horse’s back cuts down on their stimming (a repetitive movement that self stimulates the senses). Interacting with the horse is good overall sensory work while the actual horseback riding can be soothing because of the rocking motion. Again, giving commands allows the child to work on verbalization. I know that for most people owning a horse is out of the question, but there are several places that have horseback riding lessons where your child could get some of the same benefits.

http://www.youtube.com/watch?v=V11E-N2pK_o (it’s a youtube video about the Horse Boy Method)

Lois Brady found that a potbellied pig named Buttercup works wonders with the children. She’s a speech language pathologist, so of course her focus is getting the children to talk. But she has found that her pig is great for sensory work because he has different textures in different places on his body. The best thing about him is that people don’t have preconceived fears about pigs, like they might with a dog or even a horse.

(Photo from: http://www.prweb.com/releases/animal_assisted_therapy/continuing_education/prweb9261001.htm)

Buttercup is a great example that really any kind of pet can be used to help with things like speaking, motor skills, empathy and self-confidence. Some people prefer to have an animal specifically trained as a service animal and that has its benefits as well. You can read my post about autism service dogs to learn more about them. The most important thing is to decide what animal (if any) will be a good fit for your family.

Check out more great posts from Sarah Allen on her blog, Animals Help Heal. You can follow her on Twitter @AnimalsHelpHeal.

You Think You Know…

8 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Today, I am also participating in the WEGO Health True Life Tuesday Blog Party, in which participants start their posts with the phrase, “You think you know, but you have no idea…”

You think you know, but you have no idea.

You look at parents who have special needs kids, and you contemplate the things you think they are doing wrong. Thinking you know better, you utter sentences that start with the phrase, “If that was my child…”

Until you get handed a diagnosis of autism and realize that, wait a minute, that is your child. You find yourself facing the same challenges as all of those parents you used to be quick to judge, and you find yourself responding in very similar ways.

You have no idea what special needs parenting is like until you are wearing those shoes.

Yes, my child has sometimes been the kid having a very loud meltdown in a grocery store.
Yes, I am the mom who has occasionally snapped needlessly at her kids in public, because she was just so overwhelmed.
Yes, I sometimes let my child play on the computer for longer than is considered ideal, because I am so desperate for time to take a shower.
Yes, I do want to get all available services for my child, but that is way easier said than done.
No, I don’t invite my son’s classmates over for playdates to encourage interaction. They are all special needs kids, and seeing each other outside of school is too weird and overwhelming for them.
Yes, my son’s hair is tangled and unruly. He is terrified of having it either washed or cut, and I just have to do the best I can. I know it doesn’t always look great.
Yes, I vaccinate my kids. I think the autism/vaccine link is pure bumph. I respect anyone who does believe in the link and I expect the same courtesy from them.

And no, I had no clue what special needs parenting was all about until I woke up one morning and discovered that I was now one of them. Many things have surprised me about this journey. There are things both good and bad that I did not expect. Being a special needs mom has taught me a great deal about myself and about other people. One of my biggest surprise discoveries is that I have far bigger reserves of patience than I thought. For the most part, I can stay calm in the face of a meltdown, and do what I need to do to see myself and my son through the storm.

Last week, I used my social media channels to ask other moms the question: just what is it about special needs parenting that has surprised you the most? I got responses that were both poignant and uplifting. Many of them I can relate to myself.

Here’s what other special parents have found surprising about their journeys:

  • The apathy of most people. If it’s not affecting them personally, they don’t give a crap or they say ” Why should I? It’s not affecting me” (Leigh)
  • It’s not as bad as I thought it would be. (Jacquie)
  • How much energy it takes at times…like mid-meltdown… (Lucette)
  • The lack of community support. I was also surprised by my reaction to that – one of passion and action! (Amy)
  • How ignorant the NT’s can be (Ron) (For the uninitiated, NT means neurotypical, a fancy term for “typically developing”)
  • How strong it can make a mother! (Mimi)
  • How screwed up my idea of success was. (Jennifer)
  • How uncaring the rest of the community is and how much energy it takes to keep on fighting for acceptance. (Susan)
  • The fact that we have to fight our school systems for EVERY support and service that will help our kids in the future. (Barbara)
  • How hard it is to accept offers of help, and how much better it works for everyone when I do. (Ruth)
  • How strong I’ve become, physically and emotionally…well, most days anyway. 😉  (Megan)
  • How after a while you stop seeing the special needs, and just see the child. It’s only ever other people who make you notice the special needs again. (Freya)
  • How hard but rewarding it is! (Hike. Blog. Love)
  • How much you truly learn from them! And I now know the real meaning of determination. (Vera)
  • How I have forced myself to re-evaluate some of the values I had about life. Some people will always do “bad” things, our faith in a Higher Power should be our motivation to forgive those people since we ask forgiveness from “Above” and HE forgives indiscriminately (Naadia)

Reading what these parents have to say should send a very clear message that even when there’s a common diagnosis, like autism, everyone’s journey is unique. We all have our own sets of challenges.

So next time you think someone is falling short of what they could or should be doing as a parent, just remember that you’ll probably never have the opportunity to wear their shoes.

(Photo credit: http://www.flickr.com/photos/libookperson/6187904322/. This picture has a creative commons attribution license.)

Affection, Empathy And Autism

5 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Several years ago, my mom volunteered at a “Riding For The Disabled” program. She would help a child with cerebral palsy or Downs Syndrome onto a horse, and then lead the horse around a field. Many of the kids she worked with would be on the edge of meltdown at the beginning of the designated hour, but after five minutes on horseback they would be completely calm.  My mom, always an animal-lover, adored the horses, and she loved working with the children.

There was a little boy with autism in the group, and although my mom didn’t love him any less than the other kids, she did find him a lot more challenging to work with. He was a highly intelligent child with severe communication deficits and some intense behavioural issues. Once settled on his horse, he would jab at the horse’s neck and tug at its mane, and any attempts by my mom to stop him would lead to meltdown. She swore that he deliberately kicked her as he was getting down from the horse after his turn. More than once she returned home with nasty bruises on her arms or legs.

Although this was all in the day before autism became a more direct part of our lives, my mom was sufficiently aware to know that the child’s behaviour was a result of his autism, and not a personal vendetta against either her or the horse. She believed, though, that he was not remotely capable of either affection or empathy. And because people form generalizations based on what they know, for a long time we subscribed to the commonly held belief that people with autism are not able to have meaningful connections with other human beings.

In fact, when we were waiting for my own son’s diagnosis, in our ignorance we pretty much ruled out autism in our own minds.

“He’s so affectionate,” we would say. “It couldn’t possibly be autism.”

Now, of course, we know better, and we are able to gently correct the people we come across who follow the same stereotype.

My son George may not ever be a great talker, but there is nothing wrong with his ability to feel and express love. All I have to do to know this is come home after work. My husband and sons watch for me from the front window, and as soon as they see me walking down our quiet street, my husband opens the door. The kids dash out and race each other to me. And then, with looks of pure joy on their faces, they launch themselves at me so hard that the force of their love knocks me off-balance.

Sometimes, when I am working on my laptop at home, George will  come up to me and somehow arrange his lanky eight-year-old self on my lap. And he will wrap his little arms around my neck and hug me, oh so fiercely. Then there are the times I wake up in the night to find him snuggled up to me, sleeping peacefully with one of his hands curled around a strand of my hair.

Admittedly, there was a time when I worried about what seemed to be a lack of empathy towards his little brother, James. About a year ago, I told a member of George’s therapy team that whenever James was crying, George would laugh hysterically at him. I expressed concern at the lack of empathy and the apparent joy that he got out of his brother’s pain. The therapist smiled at me kindly and said, “He’s a seven-year-old boy. That’s what seven-year-old boys do.”

While most other people have to be educated on the behaviour of special needs kids, my husband and I frequently have to be told how typical kids behave. It’s a little bizarre, but there it is.

The truth is that although George can be a typical pain-in-the-ass brother, just like any other brother, it is clear that he adores James. He is never comfortable with James’ absence, and his demeanour takes on an air of tenderness when James is sick. There are times when one of the boys will go in search of the other one during the night, and I will find them in the morning, curled up together, with George’s arm thrown protectively over James’ shoulders.

When I think about George’s future, there are many things I worry about.

His relationship with his brother is not one of them.

(Photo credit: Kirsten Doyle)

Goodbye WEGO Health Challenge, Hello Blogathon

1 May

In April I participated in the Health Activist Writers Month Challenge, in which I published a post every day for the month of April, based on health-related prompts.

I am now participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

When I first started Running For Autism a little over two years ago, my blogging was an airy-fairy kind of affair. My original intent was for this to primarily be a running blog, but it morphed very quickly into far more than that. Running is such an important part of who I am, and it is frequently difficult to squeeze it in with all of the other responsibilities I have, and I found impossible to write about it without adding the context of my life. For example, how could I write about running to raise funds for autism without trying to raise some awareness about the impact of autism on my life?

And so my subject matter started expanding to include posts about parenting and autism. As my wedding day approached and I started feeling the typical angst of a bride-to-be, my blog became a place for me to vent about my stress and toss around ideas for how to plan a wedding that both of my children could be fully involved in. At some point I started to try my hand at fiction in the Indie Ink writing challenges. A little while after that, I felt a little glimmer of bravery that allowed me to tentatively start discussing my struggles with depression.

Even as I cast my net of topics wider and grew my audience, I found it difficult to prioritize my blogging. I have a lot on my plate. I am a wife and mother. I have a child with autism. I have a full-time job outside of the home that involves two hours of commuting each day. I help my husband with his business and take care of making sure bills are paid and taxes are filed. I run. I have a commitment to write three articles a week for an ezine.

Inevitably, blogging took a back seat to all of this, and I was posting once or twice a week if I was lucky.

When WEGO Health sent me an email inviting me to participate in the Health Activist Writers Month Challenge, I wasn’t sure if I’d be able to see it through to completion. I mean, we were talking about a blog post every day for a month. In the end I signed up, spurred on by the fact that the challenge coincided with Autism Awareness Month. This seemed like a great opportunity not only to give my writing a boost, but to spread the word about autism and offer some hope and encouragement to parents feeling overwhelmed by a newly acquired diagnosis.

We have now reached the end of what turned out to be a very successful challenge. The prompts that were provided offered new ways for me to think about the health focuses that matter most to me – autism, mental health and running. I had to really dig deep and be honest with myself and with the world – or at least, the corner of the world that reads my blog. I had some moments of soul-searching, and I found myself addressing questions that I’ve never had the courage to ask before.

There were two days on which the prompts just couldn’t work for me. Try as I might, I could not get past the writer’s block. The challenge rules allowed two “get out of post free” days, but I was loathe to use them. Instead, I turned to the list of bonus prompts that were provided just for occasions like that. As a result, I published a post every day in April.

Through this challenge, I gained some new readers, and some great new blogs to follow. I read some incredible stories of courage and perseverance. So many aspects of health were covered in this challenge: diabetes, cancer, mental illness, special needs parenting, and so many others.

When you read so many stories of people fighting to survive, going to the ends of the earth for their children, and using their own painful experiences to help their fellow man, it really gives you renewed faith in the awesomeness of humankind.

Thank you to WEGO Health for putting this challenge out there. Thank you to my fellow bloggers for taking me on journeys that I could never have otherwise imagined. And thank you to everyone who reads my blog, who leaves comments or clicks the “like” button, or who shares my posts on Facebook or Twitter. It means a lot to me to know that my voice is being heard.

I am compiling a list of fellow bloggers who took the challenge, and when my new website is launched, they will be on the blogroll.

(Photo credit: http://www.flickr.com/photos/mariareyesmcdavis/2890706354/. This picture has a creative commons attribution license.)

Beyond The Stars

29 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 29 – Six sentence story: In this day of micro-blogging – brevity is a skill worth honing. Can you tell a story and make it short and sweet? What can you say in six sentences?

When my son George was diagnosed with autism, I didn’t really know what it meant or what he would ultimately be capable of.

I didn’t know what it would mean for my family, or for George’s sibling relationship with his little brother.

Since then, we have discovered that George has potential that reaches beyond the stars, and that all we have to do is help him get there.

We have discovered that he has a big  heart with an infinite capacity for love, and that he and his brother will be best friends for life.

There are challenges, and I worry about what the future could bring for my boy.

But I believe in him absolutely.

(Photo credit: http://www.flickr.com/photos/gsfc/5161800961/. This picture has a creative commons attribution license.)

The Good And The Bad

26 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 27 – 5 challenges, 5 small victories: Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Autism can be a very complicated thing to live with. Its manifestations change from day to day. One day, my son will be able to tolerate loud noises but a small change in routine will send him into meltdown. The next, we’ll be able to turn his entire routine upside down but anything louder  than a whisper will set him off. Different strategies work for different kids on different days, and everyone you might see guidance from is convinced that their opinion is the right one.

The things I find most challenging about being an autism mom don’t really have to do with the autism itself. Whatever might be going on with my child on any particular day, I just deal with it. Sometimes it’s hard, but I always know that I’m doing my best, my son is doing his best, and at the end of the day we’ll all survive.

My challenges tend to come from sources other than my son and his autism. I list them in no particular order.

  1. The judgmental critics. It’s a moment every autism parent has lived through at least once. You and your child are in a grocery store, which let’s face it, is a mecca for sensory overload, and your child is getting more agitated by the second. You throw things into your cart at quickly as you can, but just as you get to the checkout, your child reaches his breaking point and explodes. As you are trying to calm him down, some snarky stranger loudly proclaims, “What that child needs is a good hiding.” I once heard someone say (referring to me), “If that mother was doing her job properly, this wouldn’t be happening.” Like I’m not already carrying around enough angst with me. With my social anxiety, I’m not great at the quick comeback, although I’m definitely better than I used to be.
  2. The third-person talker. These are the people who will talk about someone who is present as if that person were not in the room. The chances of this happening increase exponentially if the subject of conversation happens to have autism. I get it all the time. “Would George like a hamburger?” they will ask. My answer always seems to throw them a little: “Ask him,” I say. Yes, it is true that George is not the world’s greatest talker, and may not respond to everything that is said to him. But, you know. At least give the kid a chance to try. If he struggles to answer, I will help him.
  3. Guilt. I was educated at a girls-only Catholic school run by nuns, and I am married to an Irish Catholic man. I can therefore say with some authority that the Catholics turn guilt into an art form. And some of the guilt that I feel as a special needs parent (hell, forget special needs – just as a plain old parent) almost makes me think I should just convert. I feel guilty about everything. Did the Taco Bell I ate during pregnancy cause George’s autism? Did I give him enough affection as a baby? Am I paying enough attention to my other son? Did I get too mad at George when he tipped over the laundry basket?  The list goes on and on, and my guilt makes me constantly second-guess myself when I should just be following my parental instincts.
  4. Time. Time very often seems to be my enemy, so much so that I sometimes regard it as a person. Time with a capital T. No matter how much I try, Time seems to run away from me. At the end of each day, there is always something that remains undone. Parenting is my absolute number 1 priority, so my kids’ needs are always taken care of. But I tend to let other areas of my life slip occasionally, and that is detrimental to my physical and mental health.
  5. The Internet. When George was diagnosed with autism five years ago, the first thing I did when I got home was Google autism. I obsessively read web page after web page. Every link that I clicked on seemed to have some information that flatly contradicted something I’d read somewhere else, and in the end my brain was hurting from information overload. I was overwhelmed by not knowing what information to trust. Since then, I am wiser in my use of the Internet and I have learned, for the most part, how to tell the good information from the noise. But the Internet, with all of its gazillion theories about the causes of autism, can still hinder more than it helps a lot of the time.

In my house, there is no such thing as a “small victory”. Every single accomplishment, all of the positive things in our lives – are massive, big things. That’s the way it often is in special needs families. We tend to place extra stock in things that other families take for granted. And as hard as it can be to live with autism, there are many things that I am grateful for, that enable me to keep chugging along even at times when I just want to cry.

  1. Love. Love really does make the world go around. Out of all the challenges my son has, lack of affection is definitely not one of them. Both of my sons give the best hugs that I can carry around with me all day. My favourite moments are when my boys somehow manage to squeeze onto my lap together to give me a hug. I sit there, with my arms full of squirmy, giggling kid, and never want the moment to end.
  2. Running. Yes, running keeps me sane, and when something stops me from doing it – like illness or injury – depression starts to creep in. The fact that it keeps me in good physical health is almost a by-product of running. My prime reason for doing it, along with raising funds for autism, is to keep my mental health on an even keel. I struggle with mental illnesses like depression and anxiety, and there’s no better way to combat my darker moments than a good long run. I am stubbornly resistant to using medication to deal with my issues, and running acts as a decent substitute for chemicals most of the time.
  3. Therapy. It has been said that running is cheaper than therapy, and while that is certainly true, I actually do need both. The therapist/client relationship is a very strange one. It involves the client placing complete trust in someone they actually know nothing about. I have been going to my therapist for a little over a year now, and it has taken me almost all of this time to build up my trust to a level where I can really open up during my sessions. Sometimes the sessions are very hard and they make me feel all weirded out for a while, but the truth is that once a week, I get the opportunity to talk without reservation in the sanctuary of my therapist’s office. I can say whatever I like and there will be no judgment or anger.
  4. Writing. I am somewhat inept as a verbal communicator, and I experience high levels of anxiety in social situations. When I am talking to other people, I hold back a lot, not only because of my natural shyness, but because my brain actually doesn’t work well during conversation. I can formulate a completely coherent thought in my mind, and even mentally phrase how I want to say it, but when it comes time for me to speak, my words get lost somewhere between my brain and my mouth. With writing, that doesn’t happen. I truly have a voice, and I treasure the opportunities to speak my mind on things that are important to me.
  5. The Internet. The Internet is both a blessing and a curse. Despite the evils described in my “bad” list, the Internet is a haven of sorts. I belong to two Internet support groups – one for moms who have suffered pregnancy or infant loss, and one for parents of children with autism. Both of these groups are places where I can vent my concerns, ask for advice, or celebrate good news. Some of my best friends are people who I have known online for a long time, but have never met in person. Here’s the wonderful thing about the Internet: no matter what I am going through on any particular day, I will always be able to find someone who knows, at least to some extent, how I feel.