In So Many Words

Yes, I realize that I haven’t written about our lives much lately, except for telling you about all the wonderful books I’ve been reading! I will try to do better, but you may have to nudge me if I wait too long again.

I will say that April is a horrible month filled with mood swings and temper tantrums and IEP meetings. And contrary to what you might be thinking after reading that sentence, not all of the mood swings and temper tantrums are mine!!

At this point, we have had many conversations about how everyone is responsible for their own behavior no matter how they feel or what other people do or say to them (how dare the teacher read a sentence ending with an exclamation point without using the proper amount of emphasis!), and that there is no excuse for hitting, kicking or throwing anything (pencils, shoes, chairs, etc) at another person.

We have also started a new behavior plan at school, with more tangible rewards that can be earned within a day or less and a stronger visual component to show how he is doing. It is likely that we will be starting a medication trial soon, although I want to give the behavior plan time to be solidly in place first and I would like to get objective feedback from school without them knowing exactly when we start the meds.

Considering medication is a big step for me. It is scary to consider possible side effects, both short term and longer term that may yet be unkown, plus I keep wondering if there’s something else we could do that would help. I have even considered moving him to a more restrictive environment at school for part of the day. Although that may be helpful or necessary at some point, we do see the mood swings no matter what environment he is in, even when he is completely in control of what he is doing.

I’m not trying to defend my decision, simply sharing some of the thought processes that have gone into it. Right now we are looking at a two-week trial to be followed up by a discussion with the psychiatric NP to decide where to go from there.

With only five more weeks of school, I am starting to really look forward to summer. Michael will be going to the same babysitter he had last year for several weeks, who is a wonderful woman who also teaches high school life skills during the school year. He will also go to a Summer Therapeutic Activities Program (STAP) for five weeks, the same one he has attended for the last few years.

I am going to try yet again to get him into the Children’s Institute at the National Autism Conference in State College. They generally give preference to children who have not been there before, but since it has been five years since he went, I am hoping he might get in. I asked about it last year when I was there, and they encouraged me to apply again this year. Unfortunately, the registration info isn’t up yet, although the save the date flyer said April 30th.

Michael also really wants to get Hersheypark passes this summer. We didn’t get them last year, but he has grown enough to be a Twizzler, which means he can ride all 11 of the roller coasters now. (I will only get on 7 of them, but that’s beside the point!) We are trying to decide whether to get three passes so the whole family can go or just get two and take turns accompanying him to the park.

Hmm, I just had a thought – maybe I’ll get two for now and add the third later if we decide we need it. (See, that’s another reason I should blog more often, it helps me think through stuff and come up with great ideas!)

Well, enough rambling for now. How about you, are you looking forward to summer or dreading it?

As I was catching up on some blog reading today, I came across a book review over at Whitterer on Autism that I was very excited to see.

The review was of a book called From Anxiety to Meltdown by Deborah Lipsky, and the reason I was so excited is that I saw Deborah speak last year at the National Autism Conference in State College, PA.

Deborah is a woman who was diagnosed with high-functioning autism as an adult and has added author, comedian and public speaker to her extensive list of accomplishments and roles in life. The talk is about an hour and is well worth the listen. She is extremely well-spoken and very funny, plus I think you will learn a lot from what she has to share about her experiences.

Here is the link to the archived webcast:

http://streams.wpsu.psu.edu/103-Closing_Keynote08062.html

(When I watched it again earlier, the sound didn’t always quite match up with the picture, but that may just have been my internet connection as it cleared up a few minutes in.)

Just in case the link doesn’t work, it came from the list of webcasted programs from the 2010 conference at http://www.outreach.psu.edu/programs/autism/webcasting.htm. Deborah was the closing keynote speaker, so her presentation is listed at the very bottom of the page.

Enjoy!

Welcome to May, everyone! I haven’t posted many links in a while, but I have come across a few posts this week that I really wanted to share.

Recognizing Readiness is the third annual blog carnival on child development hosted by Dr. Barbara Boucher at TherExtras. This is an excellent collection of posts on the topic of readiness from a variety of viewpoints, and I’m sure whatever stage your child is at, you will find something of interest among them.

An Interview with Carol Greenburg, Autism Women’s Network Regional Director is an in-depth discussion about Ms. Greenburg’s work as an advocate as well as some of her experiences as a person with Asperger’s Syndrome. Definitely a must read!

Red Flags for Autism in Toddlers at ChildTalk is a great list of some early signs of autism, most of which I only learned about after our son was diagnosed.

While this may be familiar information to many of us with kids on the spectrum, I do think it will be a really good resource when I am approached by people who have concerns about a young child in their life.

Words Create Worlds – If you don’t have Mother of Shrek in your feed reader, you need to add her now before you do anything else…. Okay, now you can go and read her post about the power of words. (And make sure to follow the links in her post as well; you will be glad you did.)

Title: Delightfully Different: A Novel
Author: D. S. Walker
Length: 156 pages
Genre: Fiction
Publisher/Date: iUniverse.com, 2010
Source: Review copy courtesy of the author

Delightfully Different by D. S. Walker is just that, a delightful look into a world that is somewhat different from what most people know as typical. As it is described on the author’s website:

Delightfully Different shares a poignant glimpse into the life and mind of a girl with Asperger’s Syndrome who demonstrates through her compelling experiences that every life has a purpose and that being unique is what makes each of us special.

Although this novel is listed on Amazon as being for appropriate for a reading age of 9-12, I think it will appeal to a much broader audience. It is as much the story of the mother who is trying to figure out how to understand and help her daughter as it is the story of the young girl who sees the world in her own unique way.

The book also delves into the complexities that arise when two people from different family backgrounds and cultures marry. Along the way, we encounter some of the fascinating aspects of life in Hawaii, including a competitive private school system that seems to rival that of New York!

There were several things I really appreciated about this book. One is how the story goes back and forth between Mia (the daughter) telling of her experiences growing up and Francesca (the mother) recalling what she thought and felt about what was happening. Another is how they each reflect on certain things that they later learned were specifically related to the way Mia’s sensory processing difference and Asperger’s Syndrome affect her perception of the world.

The topic of bullying is also addressed in this novel, and I found it to be from a very positive viewpoint. The mother is strong in her response to what is happening at her daughter’s school and the school does respond with increasing seriousness as she continues to advocate for the situation.

One other strength of this book is its contribution to the topic of Asperger’s in girls. There is a lot of attention given to how this disorder appears in boys, but not as much on how it can present differently with a girl. This novel is a solid contribution to the effort to raise awareness and understanding of this less-understood area.

All in all, Delightfully Different is a wonderful book that I highly recommend. In fact, I like it so much that I am actually giving away one copy of this book to one of you! I was honored to receive a review copy from the author, which is now in my permanent collection, and I will be purchasing a brand new copy for the winner of this giveaway.

How to Win
To enter to win a copy of Delightfully Different by D. S. Walker, all you have to do is leave a comment on this blog post before 5:00 PM EST on Thursday, April 28, 2011. The winner will be contacted within 24 hours at the email used to leave your comment and will have 72 hours to respond with their mailing address, or another winner will be chosen.

This post is also part of the Best of the Best monthly blog carnival at Help! S-O-S for Parents, which during the month of April is focusing on book reviews, many with giveaways. The carnival will be published on April 15th, and each giveaway will run for at least one week to give you time to visit them and enter to win!

I have what some people might consider to be an inordinate need for alone time, and by this I mean being alone for significant periods of time with no one wanting or needing my attention or help.

Simply going into a room and shutting the door does not lift the weight of the possibility that I will be called upon at any moment, or even just disturbed by other activities going on in the house. To truly relax, I need to be completely alone.

This doesn’t mean that I don’t love my husband and son and want to spend time interacting and taking care of them, because I most certainly do (even though it might not appear that way when I am feeling in need of some solitude).

And I don’t believe it is because I have a child with special needs, although that does add its own challenges to the mix. I have always been this way, spending a lot of time alone reading and thinking, and although I enjoy having friends and being involved in various endeavors, my threshold for social interaction seems to be lower than for many people I have observed.

This might seem like an insignificant desire to many people, and it is certainly not something that is a visible need such as food, clothing or shelter. But having the opportunity for alone time withheld is as painful to me as being quarantined would be to a person on the other end of the socializing spectrum.

I am extremely fortunate that my husband is so accepting and supportive of me in every way, including recognizing this need and helping to provide ways for me to have it met.

• For instance, he works full-time and I work a part-time job which allows me an hour or two of uninterrupted time almost every weekday. When I tried to increase my hours about a year ago, I realized after only a few weeks that I wasn’t handling things as well and needed to go back to my original schedule.
• At some point each week, he will usually take Michael out of the house for a few hours to run errands or do something fun. This doesn’t always work out due to schedules or how Michael is doing, but he makes a point to try.
• Occasionally, he will even take Michael on a road trip, usually to visit his parents a couple of hours away. This used to be once or twice a year but has been almost monthly over the last year, as my mother-in-law has Alzeheimer’s and Bob wants to spend time with her and also give my father-in-law a break of his own.

In fact, as I write this, I am sitting in a quiet house, enjoying the knowledge that I can make my own schedule for the entire day and sleep without being awakened by middle of the night bathroom trips or early morning cartoons. It is truly a blessing to me and one of the best gifts I could ever get.

I’m curious if you have ever thought about what you need to relax or recharge. It may be completely different from what I need, but that’s okay.

I think the most important thing is to figure out what you need and then accept it without feeling guilty. Guilt about needing time away from everyone kept me from taking full advantage of the opportunities I had for many years, and freeing myself to simply accept the gift I was being given has been a wonderful thing.

So, what do *you* need?

I finally made it through all the posts on the February What’s On Your Nightstand? and was surprised by how non-fiction heavy so many of the lists are. While I do read non-fiction, I tend to heavily favor novels. I did still find quite a number of books for my TBR list, though.

As we move into the third month of the year, I am still on my Mercedes Lackey kick and enjoying it very much! And I have even read some more short stories, which is a sort of personal challenge for this year.

Here are my thoughts on my most recent reads:

The Best Kind of Different: Our Family’s Journey with Asperger’s Syndrome by Shonda Shilling
I picked up this “diagnosis memoir,” as I tend to think of them, on a whim from the library and am glad I did. The writer is refreshingly open about her experiences becoming a wife and mom while her husband is involved in a demanding baseball career and shares candidly about the ups and downs of parenting a child with Asperger’s Syndrome both before and after the diagnosis.

We hear a lot about the grieving process that parents can go through upon receiving the news that their child has a disability. Some parents feel intensely sad that their dreams for their child may not be realized and some may also feel guilty for things they think may have done to cause the problem. While Shonda does not mention these, she does touch on something that I had felt but not verbalized as being a part of grief. Here’s what she says:

It was both comforting and upsetting to read these Web sites. On the one hand they offered a clear explanation of why my son acted the way he did. On the other hand it hurt to realize how clueless I’d been about my own child and how I hadn’t been doing right by him. I could only read so much, a little at a time.

I think this is as good a representation of the combination of relief and sorrow that came upon me once we had a diagnosis of autism for Michael as I have read. I was so glad to have some direction, but so sad that no one had been able to tell me how to communicate with him and help him earlier. And I think the sadness and anger, and sometimes fear, that sometimes hit me even now are directly related to my desire for everyone in his world to treat him with the understanding and respect that he deserves while teaching him in a way he can understand how to be a good friend and student and, later, employee and citizen.

I would recommend this to book to anyone who wants to understand more about Asperger’s Syndrome. You do not have to be at all familiar with disability to connect with the story or the family in the book. There is also quite a bit of discussion about the dad’s role in the family and the struggles and growth they have experienced both in their marriage and their parenting over the years. Many books about family stories are focused on mom’s experience much more than dad’s, but this book has a lot that dads in this situation can likely relate to, even if they aren’t baseball stars!

What I Didn’t See and Other Stories by Karen Joy Fowler
After several years of avoiding short stories, I decided I needed to stop the silliness and read some this year. I think I was avoiding them partly because I wouldn’t want to get engrossed in a story only to have it be over so much earlier than a novel would be.

Having read this collection, I am reminded that another reason I have tended not to read them was that, when done well, they require your attention at every moment. But that’s also the beauty of a great short story, that you can experience an entire world in just a few pages.

Fortune’s Fool (Tales of the Five Hundred Kingdoms, Book 3) by Mercedes Lackey
This one was just as much fun as the first two, and perhaps even more as we see two characters from very different cultures and environments meet and fall in love, only to be separated by danger and have to use all of their wits and skill to find a way out.

Reserved for the Cat (Elemental Masters, Book 5) by Mercedes Lackey
I’m still waiting on book 3 to come in at the library, but I definitely enjoyed this one much more than book 4. It really gives you the flavor of the entertainment world at the time, both in France and England. And the cat is great!

Finding the Way and Other Tales of Valdemar, edited by Mercedes Lackey
Wow – my third short story collection this year already! I enjoyed most of the stories in this book, although there were a couple that seemed to miss the mark on readability and didn’t seem (to me at least) to fit in as well with the theme.

You can see all the books I’ve finished so far this year on the bookshelf on my Books page or read all of my mini reviews by clicking on the 2011 Reads tag.

No matter how much we love the season or cherish the celebration, all special events
come packaged with additional stress. Whether it’s finding the perfect gift, baking
signature desserts, or entertaining, we all understand the extra demands of creating
memorable occasions.

Now magnify that stress to an unimaginable degree and you will begin to understand how
special events impact our children with autism. We know that children on the spectrum
do not like changes – even those that may delight – as do neurotypical kids. Their core
deficits compromise their ability to anticipate or tolerate change very well…if at all. They
prefer structure, predictability, schedules. Yet holidays, birthdays, and special events
mean:

• Change in social contacts
• Change in daily routine
• Change in expectations
• Change in sensory experiences

For children with autism, all that change pushes anxiety beyond being bearable. Some
routine changes fly under the radar, such as rearranging the house to accommodate
decorations or cooking seasonal dishes. Other plans, like parties and travel that involves
hotels or homes with new beds, new people, new smells, new sounds, clearly signal huge
stress-inducing changes. Whether the change is big or small, children with autism must
be prepared so they have every opportunity to experience the joy and fun these situations
offer. Try these tips:

Define social expectations: Let your child know how many people and who will be
there. Be specific about social pleasantries – keep them simple and be clear about what’s
expected of the child not just at the onset (shake hands and say “hi”), but also as the event
unfolds. Plan what your child should say if he does not want to talk or dislikes food being
served.

Designate a safe place and relaxing activity: Plan ahead for a place where she can go to
retreat and relax. Be sure to bring along a favorite activity she can play alone and calming
devices such as sensory toys or music.

Create a secret code. Pick a simple gesture or even a code-word that he can use as a
signal if he begins to feel angry, anxious or overwhelmed. That’s your cue to step in and
help when he’s unable to verbally express the need.

Prepare an event book. Make a book with pictures that show the place you’re going,
where you’ll stay, and activities you’ll pursue while there. If you’re staying at home, the same concept can be used to prepare your child for visitors (photos of relatives), changes
in routine, and decorations (include a photo of last year’s Christmas tree). Include extra
blank pages for photos of this year’s activities. Involve your child in taking pictures this
year, as much as his ability and interest dictates.

Maintain the routine. As much as possible, maintain her normal daily routine. Create
a schedule showing not just which parts will change, but the regular routines that will
remain the same. Knowing some things won’t change can be very important to your
child.

Include friends and family. Make sure everyone knows about your child’s socialization,
sensory, communication and dietary challenges. Ask them to honor your child’s request
to stop talking, not to hug, or her need to be alone. Step in and kindly but firmly handle
the relative who insists that “an itty bitty little huggie isn’t going to hurt him.”

It’s up to parents and family to give our kids with autism the tools they need to succeed.
Helping them anticipate changes and cope with new expectations goes a long way toward
reducing anxiety and building memories of joy and love.

This article is taken with permission from www.autismdigest.com, where readers can go
online and, by signing in, can access free copies of the magazine’s eGuide, which is packed full
of more information on holidays and gift giving for children on the spectrum. Article amended to fit the present season of Valentine’s Day.

The prompt for this edition of Blog Gems is to “link up a post that tells us about a holiday, any kind of holiday even just a weekend away (or an hour to yourself!).” All you have to do is link up your post and then read and comment on the two posts listed before yours (at least!). Visit Blog Gems – Air Your Archives #8 to link up your post or read some other entries.

As I was reflecting back over what I have written about this topic, I realized that I have just passed the three-year mark of my start in blogging, as my first post was published on January 26, 2008. It has been quite the adventure, and I still love it!

The holiday story that comes to my mind, however, is not one that I wrote about here. Instead, it was one of my very first posts on the site 5 Minutes for Special Needs, written just after it started in July of 2008.

I am reprinting the post here to make it easier. I know this is a pretty broad interpretation of the prompt, but since this is what popped into my head, here it is!

Redeeming Elvis (A Vacation Story)

What a whirlwind the last couple of weeks have been – working on articles and various details for the launch of 5 Minutes for Special Needs between posting on my own blog, going to work, taking care of my husband and son, handling ongoing transportation problems and getting ready for a family vacation that started the day before the site went live! Despite the continual itch to sneak away and visit the wifi hotspot during our vacation, we had a wonderful time with each other and my husband’s family.

One of the highlights of the trip was going to a horse riding place where the younger kids had pony rides while the older kids and some of the adults went for a trail ride. As the guide, Matt, helped my son onto his horse, I mentioned that he has autism and may not always answer when spoken to. Matt’s response was to ask me to join them, so of course my first thought was that he was worried about how my son would behave and didn’t want to be alone with him in case there was a problem. But it turned out that he actually wanted to talk to me.

As we walked along the path, he told me about about a child who has come into his life who has Asperger Syndrome. At the stable they have a horse, named Elvis, who was rescued from an abusive situation, and he wasn’t sure if they would ever be able to use him with guests. This boy has really taken to Elvis, however, and the horse has responded by being very gentle around him. From this experience, Matt has looked into the use of horses as therapy with children and adults who have various disabilities and is now planning to become certified for therapeutic horseback riding.

I never know what the response will be when I tell someone that my son has autism, although I am amazed at the number of times the person will begin sharing their concerns about a niece or nephew, a grandchild, or even their own son or daughter. This encounter, however, was such an encouragement to me. Although we hear stories every day of kids who are ostracized or damaged in some way by the people in their lives, here is a guy who had an experience and has responded by looking for a way that he can make a difference in the lives of others. All I can say is, “Way to go, Matt!”

So what’s the best reaction you have gotten to your child’s disability? Please leave a comment and share it with us.

Sunday Best is a collection of my favorite links from blogs I have read in the past week (or sometimes a bit more if I get behind!) Posts may range from thought-provoking or challenging to instructive or informational, with a dose of fun and light-heartedness thrown in occasionally for good measure.

Building Bridges Between Two Worlds: An Evening with World Renowned Asperger Advocate Liane Holliday Willey PART 1 – Great recap of her presentation with some interesting discussion on meds and also on the importance of learning about our child’s world in addition to teaching them about ours.

Be Your Own Hero… The Magic of Confidence – An encouraging post about doing what you need to do for your child while also setting boundaries about how much you can do for others.

The Old Man and the See – An amazing story about how people can respond to advice and insight and what you could learn if you listen. This is also another great example about how to set boundaries in one’s life.

Literature-Based Comprehension (Reading and Listening) – A strong website recommendation from one of my favorite SLPs.

The SLP Apps List – “A new resource for anyone interested in apps for mobile devices (iOS- iPad/iPhone/iPod, Android or BlackBerry) that have clinical applications.” The great thing about this list is that it is interactive, meaning anyone can add their suggestions to the list.

Please feel free to share your favorites from the week in the comments – I’ll be sure to check them out!

Life is such a process, isn’t it? And coming to terms with an autism diagnosis in your child can certainly be a long one, with lots of ups and downs along the journey.

I was so fortunate to find a strong community of autism families in our local area when Michael was first diagnosed – six years ago now, it hardly seems like it could be that long, but it also feels like an eternity at times. One of the amazing moms I met along the way was Elizabeth Givler, and I was so excited to learn that she has started blogging, so you all can meet her too!

Elizabeth’s blog is called Autism From the Lighter Side, and here’s an excerpt from her welcome post earlier this month:

I don’t remember how long it took, but one day I saw the lighter side. I could either approach this with a sense of humor or drown in frustration and sorrow.
I chose the humorous approach. Then came advocacy, social stories, educational journeys… and I approached them also with as much humor and lightness as I possibly could.
Humor and lightness are the approaches that work for me. Yes, I still get frustrated, and yes, we still have our “moments”, however every day there is laughter in my house.
The goal of my blog is to share with you the ways I have found to lighten the load and brighten my days, and share what I have learned and continue to learn along the way.

I have really enjoyed reading her first few posts, especially the heartfelt Words and the humorous Therapies, or “Wacky things we do that seem to be therapeutic”: Musical mayhem.

Just as I found a welcoming and supportive autism community in my area six years ago, I’d love to show Elizabeth how welcoming and supportive our online blogging community is. If you can, please take a few moments to visit her blog and say hello (and feel free to subscribe to her feed while you’re over there)!

Happy New Year’s Eve everyone!!