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A Day in the Life

Date added: 12/22/2014

A Day in the Life

Originally posted in AgeofAutism.com  Dec. 22, 2014

InclusionBy Julie Obradovic

Recently I was asked by a friend to meet with two moms of young children on the spectrum. She thought I would be a great person to have as a resource. I wrote about that experience onmy new blog last week. Ten years after I went through the nightmare of learning what was wrong and realizing the road ahead of us, these two women are going through the same. It was and always is a difficult conversation to have.

At one point, the mom of a two-year-old confessed that she was having a very hard time being around other children her child’s age. She said it was too painful to see what the others were doing, and she asked two poignant questions.

One, do I ever stop grieving? And two, does it ever get easier to be around typical kids?

It was difficult to answer truthfully for one reason only. I didn’t want to saddle her with another blow. She was already distraught and overwhelmed, crying at just asking the questions. To tell her the truth, that yes, I grieve everyday, and that no, it doesn’t ever get easier but you do learn to manage it better seemed, well…mean.

“You go through stages,” I said trying to soften the response.

After our conversation, I couldn’t get those questions out of my mind. They made me wonder about my own grieving process, as well as how often it really is brought to my attention that my daughter is not a “typical” kid.

I know that I think I think about it constantly and that I think I am assaulted by it everywhere I turn every single day, but I began to wonder just how often it really did affect me. Maybe it wasn’t as much I believed. Maybe I could give her a better answer if I actually examined a typical day for me.

And so for one day this week, I decided I would make a note of every time I thought about my daughter, autism, and/or felt a pain in my heart for what has happened to her, and for what the future holds, to really see what was going on in my head. I created a new note on my phone and typed in a brief summary of what had spurred the thought, where I was, and what I was feeling as a result to keep track.

Within two hours, I had to stop.

I realized quickly that the answer is just what I thought: always. Always. Always. Always. With brief intermittent moments of practicality sprinkled in, my brain, heart, and life is overwhelmingly occupied by the impact of autism.

I started taking notes on my way to the mall. I was heading out to go Christmas shopping in a good mood. I put on the radio station that plays Christmas songs all month long, checked my purse for my Starbuck’s gift card, and pulled out of the driveway.

Two houses away, I had my first thought. A wonderful, sweet, caring girl Eve’s age lives there. She is a beautiful and gifted ballerina, a star student, the first chair in the school band, and an overall amazing kid. She is so good to Eve. I can’t say enough about her.

And yet, they are so different. Just driving past her house every day reminds me of that. I wonder constantly had Eve not gotten sick if they would have been best friends. I wonder if Eve also would have been a wonderful ballerina. They started at the same dance studio when they were three. I then wonder what instrument Eve would have played. And I wonder how many sleep overs they would have had being so close to one another.

I have to stop thinking.

Two blocks away I pass the next house that triggers a new thought. This is the home of another little girl in the neighborhood that would have been her best friend. The other girl and this one are best friends now. Eve played with them when she was little.

She too is a sweetheart and so good to my daughter, but they are also different. When the differences became too much, the calls stopped coming. I know the trio of them would have had a blast together. And again, I wonder what they would be doing together right now and what memories they would have shared.

I have to stop thinking.

Another two blocks away, I pass the final house that triggers a thought. This is the home of two people we have become very close with because of our daughters. They also have a daughter Eve’s age, and although her daughter does not have an autism diagnosis, she has some similar issues. We bonded five years ago over our heartbreak, therapies, tutors, and knowing what it feels like to be the mother of the odd girl out.

I am so grateful for their friendship and wonder if we would have become friends had our children not been affected. It is a bright spot in all of this, much like the friendships I have gained through advocacy. This mom is the first person I reach out to about the littlest things…ugh, Eve did this today…or ugh, we have a bully on the bus…or ugh, I just can’t do it anymore. We keep each other afloat. And we make sure our girls have a good time together.

I have been in the car less than two minutes. I pull out of my neighborhood.

At the mall, I look at my list and make a strategic plan for hitting all of the stores I need. Before I get moving, I check my email and Facebook page one last time. I am working for the Trace Amounts team and there is a lot going on behind the scenes right now. For the moment, it appears, I have no requests.

A quick scroll through my newsfeed however, douses me in autism in an instant. This person’s child just pooped in the potty for the first time. This person’s IEP went horribly wrong. And moms who hate children with autism have created a Facebook page. Facebook won’t take it down.

“Well, isn’t that special,” I think in my Dana Carvey church-lady voice. I put the phone away.

The first store I enter is Pink by Victoria’s Secret. I have heard, not through my daughter but through the other moms I know with girls her age, that Pink hoodies are all the rage right now. I walk in, assaulted by loud music, bright lights, lots of people for a weekday, a wall of televisions showing the recent fashion show, and really overpriced clothing.

As I look around the shop, I wonder if this is really appropriate for 13-year-old girls and if I have been given good information. There is a slight pang in my heart as I am reminded my daughter really doesn’t know what’s in fashion, nor does she care.

It’s not that big of a deal, I tell myself, but it bothers me. I was a little fashionista at that age. I remember wanting a Liz Claiborne purse, a Coca-Cola shirt, a Swatch watch, and Forenza shirts. Benetton was also cool. Right or wrong, it feels like a loss.

It’s then for some weird reason I remember something. Gia Guidice, the daughter of Teresa Guidice of the Real Housewives of New Jersey…and yes, I watch it…I’m also huge fans of Jaqueline and Chris Laurita on the show, and I applaud their efforts to help their son and other children with autism…has just released a music video.

It’s not that great, but for a group of teenage girls doing it with a low budget, it’s not bad. Gia, who is singing, dancing, wearing make-up, and having fun shopping with her friends, is Eve’s age. Another pang.

I take out my phone and enter this into my note.

I head over to Build-A-Bear Workshop after purchasing the over-priced hoodie. Eve started collecting the My Little Pony group of dolls a few years ago. They are all neatly arranged on her top desk shelf, and she loves them dearly. She has asked for the last one and a few more outfits for them.

About a year ago I realized this was something that I had thought she would have outgrown by now. Lots of people tell me plenty of girls still love plush dolls and My Little Pony and Hello Kitty, and that may be true, but I know my daughter’s love for them is different. It’s not coming from a place of being cool and cutesy. It’s coming from being immature for her age.

I find the outfits and make the purchase, but not before I have to stand in line and wait. While waiting, moms are coming in and out of the store with their young children; all of who from what I can tell seem perfectly fine.

My mind goes back to ten years ago when Eve was three years old, when I still thought we were in a phase that would pass, and when life still seemed, I don’t know, different. Normal. Pure. Innocent.

I stop looking at the kids and face forward to read the signs on the wall instead. I then make another note on my phone.

By this point I’m becoming very aware of the fact I could fill this note all day long. I decide it would be best to just consolidate the mall experience into one summary for simplicity’s sake. When I leave, I add remembering that we have an appointment the next day with an orthopedic specialist.

Eve has developed pretty severe idiopathic scoliosis over the last two years. Idiopathic is code for they don’t know why it happened, but I do. After her seizure at 18 months old, she stopped using the right side of body properly. One doctor said it was a form of apraxia, a condition found in stroke victims.

She’s had a gait ever since, and even though she uses her left hand; I have never been convinced she’s a lefty. The fact her whole body has grown much stronger on the left side to the point it’s pulling her spine that way, even though we have done physical therapy for years and see a chiropractor, is not a surprise.

It is, however, another blow. I knew the day before the appointment we were likely looking a major back surgery. Sure enough, I was right. Eve will have her back cut open from the neck to the hips to have the whole thing reset with supportive braces this June. I said a quick prayer on my way to Auntie Anne’s pretzels.

I left the mall and headed to the local Hallmark. I like to get really nice matching wrapping paper, bows, and ribbons every year. I love wrapping gifts beautifully. You could say it’s kind of my thing.

I walked in and went right to the section I needed. Afterwards, I checked out the ornaments and went to the counter to pay. There I remembered that my neighbor’s daughter would be home from college soon. She works at the Hallmark when she is home. She babysat my kids for years, and we’re very close. I look forward to seeing her. Then just like that, another pang.

College. Probably not gonna happen.

And then, bang. Another.

Working at Hallmark. Could she do it? These ladies were so cheery and social.

“How are you today? Done with your Christmas shopping yet? Going anywhere special? Well, have a wonderful holiday!”

No, as of today, she could not. She could probably not even make the right change.

Instead of letting it get to me, I do what I always do. I smile and tell myself it’s all going to be ok. I remind myself it could be so much worse and to not even entertain the idea of feeling sorry for myself.

I tell myself to focus on Eve, that this is her pain and her journey, not mine…although, it certainly feels a hell of a lot like mine, and maybe that makes me bad in some way…lots of folks seem to think me feeling heartbroken for myself is wrong…well, screw them…anyway…yeah, where was I?

Oh yeah, well, I’m gonna give this kid the best life I can, I affirm for the millionth time. I’m showing her the world. And if the worst thing that happens is she has to live with me for the rest of her life, well, that’s hardly a bad thing.

For me, I mean, clarifying quickly to no one. Not a bad thing for me. For her? Yes. Very bad. Me? Not bad.

But I will make it great, I tell myself again. Yes, I will make it great.

I start to fantasize. We will go to Paris and spend weeks with family in Croatia on the Adriatic. We will shop and have lunch together in great restaurants, and I’ll help her make all the cakes she wants to make in our kitchen. (Eve wants to be a baker.) I will make sure that she never goes without and that she will never want for more.

But of course, I realize being smacked back into reality by the cold; I know that’s not true. As I walk next door into the grocery store, I surrender to the thoughts I just tried to fight off.

Of course she will go without, Julie, you idiot.

She will likely go without friends, without marriage, without the love of a romantic relationship, and without children. She will likely go without the ability to fully take care of herself. She will likely go without ever being able to fully express who she was on the day she came into this world.

And of course she will want for more. She already does. She already knows something is different about her. She already knows she is isolated. She already knows how much it hurts. She already knows it all.

I make it to the counter and pay for some stamps. I have to send off our Christmas cards, our annual photographic evidence of time and experience as a family. It shows us happy, which I love, but couldn’t possibly capture the pain I carry inside my heart every second of every day. Clearly, this little exercise in trying to capture it has proven it.

And yet, we are happy, I think. We are a happy family, and she is overwhelmingly a happy kid. We have a good life. She is loved. We are loved. And she will be ok. I know this. I will make sure of it. And that’s what I will focus on, I decide. Just like every other day.

I put the stamps in my purse and pass the gluten free isle.

“A whole isle,” I think to myself as I remember standing there ten years ago in tears looking for the maybe two or three things that were available.

Back in the car, I jack up the Christmas tunes. Determined to be in control of my heart and mind, I sing, “All I Want for Christmas is you” in my best voice. I make it the two miles home and pull into the neighborhood.

I pass our friend’s house. I pass her first-should-have-been-best-friend’s house. I pass her second’s and finally pull into the driveway of our home where I hope to find respite, but know that I won’t.

It has been two hours.

Julie Obradovic is a Contributing Editor to Age of Autism.

 

Hitting, Biting, Chewing and Licking

Date added: 12/04/2014

excerpted from multi award-winning Raising a Sensory Smart Child (2009) by Lindsey Biel, MA, OTR/L & Nancy Peske

Hitting and biting are common behaviors among many kids with Sensory Integration dysfunction. Not only does smacking up against or biting his brother let a child with sensory problems express his irritation, it gives him plenty of deep pressure and proprioceptive input that he can control, and it may be very calming to his system. To stop your child from hitting and biting, you need to teach him impulse control and frustration tolerance, and give him lots of input that will prevent him from feeling the need to hit or bite in the first place.

Indeed, some children with sensory processing problems hit or bite even when they aren't angry. They may be unsettled because a child is sitting too close to them, or upset by the amount of noise in the room, or they just may need some sensory input, and they respond by striking or biting another child.

If your child needs to hit, give him plenty of toys and objects he can hit throughout the day: musical instruments such as drums and keyboards, a therapy ball, punching bag, sofa cushion, beanbag chair, etc. If he needs to bite, give him safe items to chew on, such as Chewy Tubes, teething toys, or crunchy or chewy foods that don't turn mushy in the mouth such as fruit roll-ups or bubblegum (in fact, if your young child is biting, it mayt be a sign that he's hungry).

If your child injures another child, give the attention to the other child before dealing with your own so as not to reinforce the negative behavior. Then give your child a time-out (if age and developmentally-appropriate, and redirect him toward something he is allowed to hit or bite.

Inappropriate Chewing, Biting, and Licking

Parents expect a baby to mouth, chew, and bite things. If your older child still chews, bites, or licks things or people he shouldn't, recognize that these are sensory-seeking behaviors. Give him acceptable items to chew, bite, or lick, such as Chewy Tubes (plastic hammer-shaped chew toys), Grabbers (plastic tubes with handles), and Chewlery (coiled, chewable jewelry).

Crunchy snacks such as pretzels and carrot and celery sticks are also appropriate substitutes. Do not let your child chew on cuffs with buttons or the ends of pens or pencils for safety reasons (a Chewy Pencil Topper placed on the end of a writing utensil is a safer alternative).    

"At last, here are the insights and answers parents have been searching for." - Temple Grandin

No more PDD or Asperger's Syndrome video - A look into the future

Date added: 08/11/2014

We first shared this video posted on the Age of Autism website in March, 2012 as a look into the future - after the new version of the Diagnostic and Statistical Manual (DSM) was completed. Now, nearly two and a half years later, the future is here. Are we better off?   

Winning Isn't Everything

Date added: 07/25/2014

excerpted from No More Meltdowns: Positive Strategies for Managing and Preventing Out-of-Control Behavior (2008) by Jed Baker, PhD

Meltdowns often occur when children believe troublesome situations result from personal inadequacy. For example, dealing with losing and making mistakes lead to greater frustration if the child attributes these situations to his or her lack of ability. Similarly, being teased will lead to greater frustration when the child believes the negative remarks others say. All these situations are easier to handle when children do not believe negative information about themselves. Instead, they might see losing or making mistakes as something to do with the challenging situation, rather than with their own abilities. They might see teasing as a reflection of problems the teaser has, rather than a deficit within themselves.

Winning Isn't Everything

Shawn was an eight-year-old third grader who was a terrific reader, did well academically, yet struggled with competitive games despite his interest in them. Shawn could not tolerate losing any games at home or in school. Whether he was playing sports, a board game, or an academic game in class, Shawn cried when he lost, calling himself a "loser," and at times throwing the game pieces or balls at others around him. In addition, he yelled at his teammates if he was on a losing team in gym or in the classroom.

No amount of consoling seemed to help Shawn when he was in the throes of his upset. The only thing that seemed to work was if he played again and won. Many other students, as well as his sister and parents, did not want to play with him because they knew how upset he got.

Change the Triggers

After consulting with the parents, we decided to sign Shawn up for activities in which he was less likely to have problems with losing - either because the activities were not competitive, or because he was already very good at them. We signed him up for swim lessons in which he did not have to race others, and encouraged his participation in chess tournaments, as he was quite gifted in this area.

We arranged with the school to help steer him away from more competitive recess activities and, instead, to have him play on the jungle gym. However, sports during gym time continued to be a challenge, as he initially continued to cry or get angry at his teammates when his team lost.

Teach Skills to Deal with the Triggers

We taught Shawn that there were always two games he was playing, the particular sport or board game, and the invisible "friendship" game. If he lost the sport game and did not get angry, he could win a friend and others would play with him again. We convinced him that maintaining self-control and winning friends were far more important than winning games.

We also explained that losing a game did not mean that he was not smart or talented. We went over his strengths and talents and explained that the outcome of games is not always a reflection of these abilities, but is rather due to a combination of luck and effort.

The key to being able to use these skills was to ensure that his parents and teachers reminded him of the importance of the invisible game before he began to play anything. They did not wait until he lost to go over this, beause by then he would already be too upset to listen.

Try Reward or Loss Systems

We backed up the importance of self-control and friendship by creating a home point system that earned Shawn rewards (e.g., buying a new game, book , video or toy) for maintaining control if he lost a game. In fact, if Shawn won a game he received one point, but if he lost a game and did not get mad, he would get two points. In other words, Shawn got more points for losing without getting mad than he did for winning a game. For kids like Shawn, this rarely leads to a desire to lose, but rather decreases the importance of winning.

We had the school create a similar reward chart for gym. If Shawn lost a game and did not get angry, he got two points. If he won, he got one point, and if he lost and got angry, he received no points. Points went home to be added to his point system, where they could be exchanged for rewards.

After two weeks of earning praise and rewards for handling losing, Shawn's self-esteem grew, and he commented on how much better he was at controlling himself. With this newfound confidence, he was soon able to tolerate losing graciously without any rewards.

*******************************************************

In the award-winning No More Meltdowns, Dr. Baker offers an easy-to-follow 4-step model that will improve your everyday relationships with the children in your life: * Managing your own emotions by adjusting your expectations  * Learning strategies to calm a meltdown in the moment  * Understanding why a meltdown occurs  * Creating plans to prevent future meltdowns.

" . . . filled with compassion for the young "rulers" who reign over our homes and classrooms. These children are doing everything in their power to cope. Dr. Baker assures us that they can and will do so much better when their parents and teachers put their shoulder to the task, using the strategies suggested here." - Carol S. Kranowitz, MA

Struggling with the Decision to Disclose - or Not to Disclose - Your Child's Diagnosis

Date added: 07/07/2014

reprinted with permission from Parenting without Panic: A Pocket Support Group for Parents of Children and Teens on the Autism Spectrum (Asperger's Syndrome) 2014 by Brenda Dater

Disclosing to other people

Our children are disclosing, inadvertently, all the time.

Let’s rejoin the topic night on self-advocacy and disclosure and hear from Jim, parent of 9-year-old Charlie. He felt strongly that Charlie could “pass” as neurotypical and wondered why he should focus on his son’s challenges.

“Charlie’s a really smart boy,” Jim began. “Every doctor and teacher tells us he’s very ‘high functioning.’ He’s well ahead of all his classmates in almost all subjects. Kids don’t ask to play with him, he sits by himself at lunch, and during recess he reads. I guess I’m wondering how helping him understand what’s hard for him will help. I assumed as he got older and the academic work grew more challenging, he would connect to other kids more easily. I’m not sure that any of his classmates can tell that he has challenges. I think they just think he’s a smart boy.” Why would Jim teach Charlie about his social interaction challenges? How does this help Charlie?

Children with Asperger’s are disclosing all the time. Neurotypical children notice when classmates behave in bewildering ways. They wonder why a child is talking or acting in a surprising manner. They feel confused and will come up with their own label to make sense of puzzling behavior. This happens to many of our children who get branded as “weird” or “strange” because their classmates don’t understand them.

How do our children “disclose” without intending to do so?

• Having meltdowns at school.

• Using a loud voice in the classroom.

• Being inflexible when working in a group.

• Not joining in at recess or lunch.

• Doing “private” behaviors in public (nose picking, masturbation).

• Pacing in the classroom.

• Standing or sitting too close to others.

• Using classmates’ supplies without asking.

• Using a keyboard or other assistive technology device.

• Talking about a special interest even when others show their disinterest.

• Not picking up on teacher’s nonverbal communication.

• Chewing on clothing or gum.

• Their nonverbal communication seems “off ”.

It is better for our children to understand and be able to express their strengths, challenges, and needs to others than it is for others to make up their own unflattering explanations.

Whether your child uses the term Asperger’s, autism spectrum, or no label at all, classmates tend to be more helpful and less exclusionary, when they know why someone is behaving in a perplexing way and what they can do or say to help.

Disclosing to classmates—when is your child ready?

Once our children have a better sense of their own strengths and challenges, and how their Asperger’s or autism spectrum diagnosis affects them, they may want to share this information with their classmates. Your child may be ready to do this if she is comfortable with talking to her class, has the help of a teacher to figure out what to say, has a generally supportive classroom, and understands why this type of information sharing is important.

Many students do this around grade four or five. Once children move on to middle and high school the information sharing is more individualized and not typically done as a full class or school. When my son was in grade four, we moved from New Jersey to Massachusetts. Since none of the other children grew up with him, they weren’t used to his idiosyncrasies. Toward the end of his grade four year, with the help of his special education teacher, he put together a presentation about how Asperger’s affects him.

The key aspects of the short presentation to his class included:

• explaining Asperger’s

• talking about his own strengths

• talking about some challenges

• being clear about how others could help.

Noah’s presentation ended with a Q&A session. One of the children asked, “Is there a cure for Asperger’s?” Noah responded without glancing at his teacher, “You don’t need a cure,” he said. “It’s not a disease.” His point was clear. Asperger’s was something you needed to understand so that you could provide support and accommodations—it was not something you needed to eradicate.

Behavior Solutions: Overstuffing the Mouth

Date added: 05/25/2014

from Behavior Solutions for the Home and Community; reprinted with permission

A child who has decreased awareness of his mouth is one who will often take two to four large bites of food before his brain registers the sensation of having the food in his mouth. By the time he notices the food, the amount in his mouth becomes difficult to chew and swallow with ease. He might chew and chomp with an open mouth, take some food out with his fingers, or use his fingers to move the food back toward his throat to swallow. He may even spit the food out onto the plate or table.

SOLUTIONS

* Cut finger food such as sandwiches, pizza, and burritos into bites.

* Have the child use a fork or spoon, rather than his hands, to eat. This will help with pacing and decrease overstuffing.

* Start with putting just two bites on a plate at a time, and then increase the number of bites as his pacing improves.

* Encourage the use of a napkin or wet wipe between bites to keep him from taking too many bites before chewing and to aid rhythm. Verbally cue him: "Bite, chew, swallow, wipe your mouth."

* Give him foods that offer increased sensory stimulation to raise awareness of his mouth. Examples would be beef or turkey jerky, popcorn, ice chips, hot sauce, or lemonade. These types of food and beverage add flavor (spicy, savory, sour, salty) and texture (chewy, crunchy).

* Encourage him to take a drink of milk, water, or juice in between bites to aid in swallowing the food and clearing his mouth.

* Your child may need professional help from an occupational therapist or speech therapist that specializes in oral motor and oral sensory treatment.

_______________

Need a quick solution for a challenging behavior? Look it up in Behavior Solutions for the Home and Community by Beth Aune, OTR/L in this handy reference guide for parents and caregivers.

 

Grief and Autism

Date added: 05/17/2014

by Tammy

Originally published by the Center for Engaging Autism on May 2, 2014; reprinted with permission 

As a young child, I attended an extraordinary number of funerals for family, parent’s friends and pets. Each experience was very concrete for me. I recall standing up on the kneeler with tiptoes to see the body in the coffin. I asked if I could touch the body. My dad knelt next to me. Touching the hard, cold body, I immediately realized it was different than my memory of this person. And in that moment, death became very real.

In Temple Grandin’s movie, it struck me how she always commented when an animal or person died, “Where did he go?” Like her, it was apparent to me as a young child that the spirit of the once living being was gone. The visual and tactile experiences were beneficial and helped me learn how death was a part of life.
Yet, typical losses for children are not confined to the death of a loved one. There are many losses your child will experience – moving, changing teachers, school staff, friends, losing a pet or favorite object. Supporting and teaching children positively through these “little deaths” will improve their coping skills when facing major loss. Preparation and education about death alleviate anxiety. For children with autism, grief is often complicated. While some may never grieve, most do. Some may not grieve immediately after a loss, instead experiencing delayed grief. And some may attach their feelings about this loss to something unrelated, smaller, tangible, and thus more manageable to them.
Researchers have observed the grieving process as profoundly affected by autism. Children with autism may develop bizarre and distorted ideas about death. To avoid this:

  • Questions need to be answered immediately and repeatedly without leaving the child to develop maladaptive ways of thinking.
  • Keep answers simple and matter of fact.
  • Bereaved children need clear, concrete information.
  • Avoid unnecessary or disturbing details and model appropriate emotions and attitudes. Researchers observed that conversations started by parents often caused confusion and increased anxiety in the child.
  • People with autism need help during this process, but there are ways, supported by research, to do this effectively.

The methods listed below are recommended as effective positive behavioral strategies for children with autism in grief.

Social Stories from Carol Gray
Develop an age appropriate story to prepare your child for any death or ritual event. Primer on Social Story elements
If you anticipate a strong reaction from your child at the event, I recommend that you make arrangements for a private viewing, before others arrive. Also, be sure you bring appropriate snacks, drinks and activities for the child. Social Stories can provide increased structure to a difficult event or day. A story may also be written for a child to guide them through the emotions of grief; how to think, act, respond to condolences, or expected activities to engage in.
I never realized how rich my funeral experiences were, until I attended a funeral with my adult friends. For many of them it was the first time they attended a funeral. They did not have a clue about expected behavior. For example, they mentioned their plans to leave immediately after the memorial service. I told them there would be a lunch after the cemetery and that was a very important time to be with our grieving friends. They stayed and were glad they did. Remember the “hidden curriculum” when setting up a Social Story or visual scheduleThere are expected ways to behave with each activity, and each serves a purpose. Most elements of funeral or memorial rituals are designed to meet our psychological needs.

Create a Visual Schedule
A well-designed schedule will have meaning to your child with choices and preferences specific to them. A child may need prompting and feedback to establish or reestablish the schedule after a death occurs.
Problem behaviors increase due to unpredictability in the daily routine. In the death of a significant person with family and funeral rituals, unpredictable routines are expected and monumental. In one study, when a random schedule was made more predictable with a picture schedule, problem behavior was eliminated.
Try this method used in the study: A photo book with pockets was used to introduce tokens to establish the schedule. The tokens reinforced successful completion of a task or activity. Tokens would be saved, with a set number to be used in exchange for a desired item. Eventually the tokens may be faded out. An individual schedule may provide structure and help in resolution. For bereaved children with autism, positive reinforcement with tokens may help in adapting behavior and reducing problem behavior.

Addressing Sleep Issues by Mark V. Durand
Sleep disorders are common for bereaved children. Sleep difficulties may be, in part, the result of associating sleep with death. Sleep terrors occur in children with autism; it is sudden arousal from sleep with crying, screaming and intense fear.
In this study, parents were trained in intervention techniques and data collection. Parents recorded bedtime, how long it took the child to fall asleep, onset and duration of sleep terrors, waking time, nap time and duration on sleep charts. Behavior logs were kept for bedtime and sleep terror episodes. Once the baseline data was established, parents began the intervention.
Parents woke the children thirty minutes prior to data-based sleep terror times with a light touch, until eyes were open, then they were allowed to go back to sleep. This was repeated every night until the child went seven nights in a row without an episode. Once achieved, parents were to skip one night and continue with awakenings the other six nights. One additional night a week could be dropped if no sleep terrors occurred. If sleep terrors did occur, parents were instructed to return to the original scheduled awakenings of seven nights per week. In explaining the intervention to the parents, Durand used a computer analogy.Sleep terrors occur during deep sleep, waking the child prior to a sleep terror allows them to “reboot” their deep sleep. Scheduled awakenings should be gradually decreased over time. In this study many parents resumed their normal nighttime routines as soon as the sleep terrors subsided.
Durand provided empirical evidence of the success of a behavioral intervention useful in chronic sleep terrors of children with autism. The increase in sleep each night promises to help the child and caregivers during a vulnerable time in grief.

Floortime by Stanley Greenspan
The literature in grief states that children need a “helping-healing-adult” to accept them, be with them, not prod them, but to provide opportunities for the child to share about the loss in their own time. This involved “space and silences” to discuss or simply sit in the child’s presence with understanding of the loss. Time spent with the child in this way, enabled the parent to better understand and help the child during a difficult time.
Stanley Greenspan developed Floortime, where space and silences provide at home “therapy.” For the young, self-absorbed child, it is recommended to begin at the first stage of emotional development. (Details on stages of emotional development here.) For many reasons, any child may not be able to move from one stage to the next on their own. Floortime is a therapeutic time to simply “be” with the child and help nurture them through to the next stage.
Bring this therapeutic space into your home during times of grieving. Set up a regularly scheduled time to sit at your child’s level, on the floor. Spending time without an agenda is critical. Greenspan advised caregivers to not leave the child alone or in their own world. Help is given by “inserting yourself” into your child’s world. The goal is to foster initiative, rather than passivity, by prompting and stimulating. Physical activity included motion, sound, touch and color to provide stimulation and improve motor tone. Greenspan defined the problem-solving time specific to engage the child with reality and empathy by taking an interest in how they are feeling. This is especially vital in grief.
Floortime provides opportunities to model appropriate grieving behavior, verify or affirm the child’s emotions, sadness, pain or anger and reassure the child they are loved and will not be abandoned. In grief, children reported that discussing their experiences with a supportive caring adult was beneficial, with a decrease in depression and problem behaviors for these children. Floortime connects the parent with the child, at the child’s level.

Create memorials or touchstones
These are things we hold dear to remember the person, pet, or place that we are grieving. During Floortime, if the child is willing, I recommend this be a time to create a photo or scrapbook. Think of an item the child may want to “inherit.” For my daughter this was a little ceramic turtle she played with at grandma’s house. It helps them to have a tangible, concrete item to remember and keep. It also allows the child to attach their feelings to an appropriate object and creates a space in which they can grieve. This gives the emotion structure and makes an abstract process concrete.

I believe it is important to model grief and show children with autism how you are managing through the process. Give children very visual and concrete ways to experience grief and be comforted. More information on any of the above interventions can be researched online or at your library. Good luck on the journey.

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What to Do When "Stimming" is Taking Over Your Child's Life

Date added: 12/29/2013

excerpted from Teaching Your Child with Love and Skill: A Guide for Parents and Other Educators of Children with Autism, Including Moderate to Severe Autism by Joyce Show

Sensory issues are big in our kids. Peter seems to have an inborn insatiable urge for sensation. It has taken various manifestations over the years, including flapping, rocking, tapping, tearing things like paper, twigs, and leaves, squealing, and picking at his lips and skin, sometimes to the point of minor self-injury. Even when self-injury is not an issue, "stims" are sometimes problematic.

They consume the child's attention and energy, detracting him from learning and interacting. They disturb and distract other people, especially in quiet public places like libraries, or waiting rooms. If the child is stimming on objects, such as paper and twigs, destruction of property becomes an issue, such as picking and tearing stims on Papa's bills, brother's homework, or the neighbor's garden. How can we help our children reduce or at least contain their stims to specific times, objects, and places? Is it possible to decrease their need for stims, or teach them to inhibit them?

Why do they do it?

I've heard accounts by individuals with autism who give different reasons for their "stims." One young woman with autism described her stims as a way to generate sensory input under her control to drown out the external sources of sensory bombardment on her nervous system. We have noticed that Peter does indeed stim more when in crowded, noisy environments. Using his noise cancellation headphones does help decrease stimming behavior in those situations.

One person said he flapped in order to figure out where his body was in space, as if to compensate for an undersensitive proprioceptive sense. Some occupational therapists prescribe a regular "sensory diet" to help satisfy this kind of need. For example, you might give the child "sensory toys" like squeeze balls or exercise resistance bands to use at regular periods between academic work. You can even create a label called "Sensory Break" with or without a picture icon to place on your child's visual schedule. If he knows when he can look forward to the next sensory break, you might have better luck demanding he inhibit his stims during work times. 

Beware of tolerance

You have to be careful with not overdoing these kinds of breaks, however. Too much may exacerbate the need for more, the way scratching leads to more itching. Years ago, when trying to get Peter to sit through Mass with me in church, I tried bringing a bag of sensory toys for Peter to tap and squeeze. Instead of decreasing his need to wiggle, flap, squeal, and tap, the more he played with the sensory toys, the harder and louder the tapping and flapping would get. It's as if the body gets used to a certain level of stimulation, and then needs more to satisfy it. This is called "tolerance," a common neurologic phenomenon, in which the body adjusts to a certain level of stimulation or medication, and then needs more to get the same effect.

Indeed many occupational therapists working on sensory integration will continue a particular kind of sensory activity such as swinging a child, bouncing him on a big ball, wearing a weighted vest, or pulling against a resistance band for no more than 20 minutes at a time. Now I restrict sensory breaks to no longer than 20 minutes and usually only a few minutes, using a timer, and rotate the sensory toys I offer as choices.

What are sensory toys? 

Sensory toys and activities satisfy a child's interest in experiencing favorite sensations. There are toys of all different kinds of textures and consistencies. Koosh, gel, and bumpy squeeze balls, stretchable nylon and rubber strings, and all kinds of beaded necklaces with knuckley and clickable joints help satisfy the desire for tactile sensation. Flashing tops, pinwheels, light sticks, and light-up gel balls satisfy a need for visual stimulation. Bounce ball seats, trampolines, doorway chin-up bars, and resistance bands (thick elastic bands used for resistance training when working out muscle groups) give the proprioceptive input many children with autism crave. Weighted vests, sandbags to place on the lap, heavy blankets and body socks to crawl under and into help provide pressure. Balance boards and balance beams, playground structures, and rock climbing walls are options for the child who loves climbing and balancing challenges. Regular, tire, platform, and netted swings and spinboards help satisfy a need for vestibular stimulation.

Some parents put a few sensory toys in their child's backpack for quick access to use as a reinforcer or stress reliever as needed. As usual, be sure to rotate the toys periodically to avoid satiation. 

How to Use "Rap" as a Bridge Between Singing and Speaking

Date added: 12/07/2013

by Rachel Arntson, MS, CCC-SLP, Speech-Language Pathologist

Music is a helpful tool, but what if a child is upset with singing? Some children absolutely LOVE songs, LOVE singing, and LOVE to practice speech sounds and words using a catchy tune. But have you ever seen a child who shuts down when a song is being sung? This is not an uncommon occurrence, and I often wonder how stressful it must be for a child sitting in a preschool classroom where music is a key component to the curriculum.

The reality is this - music is a very important and vital tool for enhancing speech and language skills. Music for children with autism is especially important because songs have a clear beginning, middle, and end. Music can create the sense of anticipation because of the predictability of a song. That anticipation can result in increased eye contact, smiles, gestures, and even words. Music creates a social game and an interaction that we so desperately want and need to practice with our children with autism.

I have been writing songs for years. I believe in the power of music for children with speech and language disorders and especially children with autism. I have not forgotten, however, about those children who find music almost toxic to their ears.

In pursuit of finding "music" that was tolerable for these children, I resort to speaking with rhythm and music as opposed to singing. You see, I still believe in using music, but just need to find adaptable songs that are less stressful on a child's system. Sometimes using the rhythm without the melody is helpful. Let's use the term "rap" to describe these songs which is defined as "a  type of rhythmic talking, often with accompanying rhythm instruments." In writing music, some of my CDs focus entirely on "rap" The CD, Vocalocomotion, is one of those CDs.

Rap can be the bridge between singing and speaking. Because of the rhythm, rap is excellent for helping children detect syllables in words, a very important precursor to reading. Rap lends itself to using a lot of repetition, which is so crucial when teaching children about words and imitation. One of my favorite songs in Vocalocomotion is entitled "Hi" and focuses on repeating the word "hi" in chains of 3 (hi, hi, hi) and in 2 word phrases (Hi puppy. Hi baby.) This rhythmic rap has been highly recommended by speech-language pathologists, preschool teachers, and elementary special education teachers as it creates a predictable practice for the social word "hi" which can then be carried over and practiced into more difficult social situations.

Two other songs, "Booga Choo Choo" and "The New BMW" from Vocalocomotion, focus on sequencing vowels and consonants in strings of sounds. Children often love trains, so using a theme that a child loves is a great way to motivate him/her for speech sound practice.

If you are interested in exploring how "raps" can be a helpful learning tool, you may want to consider exploring Vocalocomotion. That CD also has 3 instrumental tracks to encourage you to improvise about any word or phrase that holds your child's attention. Never hesitate to "rap" away during your day. Rhythm helps your child in so many ways. Our CDs are meant to guide you in creating your own masterpieces!   

                

How to Improve Speech & Language Skills with Music

Date added: 11/13/2013

by Rachel Arntson, MS, CCC-SLP  Speech-Language Pathologist

Practice!

That's what children often need to improve their speech and language skills. But where do we find practice tools that are so enjoyable and so motivating that a child would independently choose to practice each day? What kind of tools can provide the necessary practice for our children while allowing and encouraging participation by their parents and siblings?

Is there a tool out there that can help children with oral motor planning needs, articulation problems, receptive and expressive language delay, interaction and engagement issues, and poor turn-taking and imitation skills? I have one great answer to that HUGE question:

Do It with a Song!

With almost every child and with every speech and language challenge I have faced, there has been a song that could have been used to help. This journey of finding the power of music to help children with speech and language began many years ago with a little boy named John. John was diagnosed with ASD and was fixated on certain objects - especially fish and ducks. John also loved music, and I did my best to engage him in songs. He was interested and attentive to music but was never able to sing the songs I sang to him. Honestly, it was a one-sided conversation. His lack of verbal participation initiated my journey of finding music, and subsequently writing songs based on children's interests. My goal and dream was to entice and empower my students to practice speech on days when I did not see them for therapy.

My search for songs which would improve verbal skills was frustrating at first. There were many songs on the market, but there were very few that would meet the verbal needs of my students - the sentences were too long, the vocabulary was too complex, and the rate was too fast. There was no room in them for children to imitate, to respond, and to take turns. They listened, but no verbal practice was achieved. Consequently, my song-search for John came to a screeching halt. I never found a song that could reach hi, but I always kept John in mind 

There was no choice but to write my own songs, and years later, I am still writing songs - a new song whenever I see a child with a different need or different motivation, Let me give you some examples.

One of my students, James, omitted final consonant sounds and needed more opportunities to practice. Because of him, I wrote "Put the Sound on the End" - a song which has been helpful not only to him but to many other children.
  Then there was Sam who didn't understand or use action words. Inspired by his love for puppies, I wrote "Puppy, Puppy, Puppy." This song, better than any other tool I could have used, taught him the actions of run, jump, sit, eat, and talk. His mom and dad would sing the song with him and use a stuffed animal to demonstrate the actions. Such activities were motivating to him and became a part of his daily practice.

There was also Ben who needed simple verbal practice of vowel sounds and simple words. "The result was the song "Go in My Car."

From Kelsey's need to imitate practice at a more reflexive level came yet another song,"Noisy, Noisy, Noisy" where she was encouraged to imitate sounds such as a kiss, a sneeze, or a cough.

The benefits of these songs became far-reaching as they created an opportunity for interaction, turn-taking, and FUN with parents and siblings. They gave the children something to listen to and to practice during daily activities, like riding in the car. They gave children new vocabulary to use in certain situations. For example, my little friend David was able to say "Owie all gone" to his mom for the first time after listening repeatedly to our "Owie Song."

You may be thinking, "I can't write music, so this is not for me!" Quite to the contrary, studies show that children do not mind how you sing. They only care that you attempt to sing, and that you do it with them. They just want to be engaged with you. They simply want a simple song that they can . . . putting it simply: sing! The key word here is SIMPLE. In my musical journey, I have explored what makes a truly enticing song for a child.  What do I look for in a song that I know will create verbal practice in children? Well, that depends on the needs of each child, and that has been my journey with my first company, Kids' Express Train.

My job as a speech-language pathologist does not always include music, but to avoid the obvious gift of music is to avoid a power that can do so much for us in our work. Remember that every moment is a note, every situation a song, and every person is a player. If you hold on to that thought, your mind will be open to the endless possibilities that every day of your life brings, and you will reap the benefits.  

Click here to hear samples of Rachel's songs from the Award Winning "Imitation Station" CD produced by Kids' Express Train - and enjoy special savings from us while supplies last.

"This CD is upbeat and lively and each song works on very specific speech and language goals. . . They are easy and fun and my kids keep wanting to sing them over and over again. . . a great continuation of the sound and word practice done in speech therapy." - Parent of 5 special needs children

Q. How do I stop my child from throwing temper tantrums in public?

Date added: 11/01/2013

excerpted from The Sensory Processing Disorder Answer Book: Practical Answers to the Top 250 Questions Parents Ask by Tara Delaney, MS, OTR/L

A. Tantrums or meltdowns are more common in children with Sensory Processing Disorder (SPD) than other children. They are a quick way to communicate "my nervous system has had enough" without using words. When any of us experience stress, finding the right words can be difficult. For children with SPD, this is even more pronounced. Often they will go right to behavior to communicate their needs. As a parent, this can be very hard, but here are some key strategies that may help:

* Learn your child's triggers: when it happens, what time of day and where (after lunch? after a long car ride?).

* Learn the physical signs that occur right before a tantrum: yawning, scratching self, sucking thumb, whining, shaking his/her head, walking/dancing on tiptoes, asking repeatedly for food or drink, and other behaviors that might indicate your child's anxiety level is rising.

* Work out a sign that your child can give you when he can't maintain anymore, such as pulling on his ear, saying "air," or giving you a card that he carries in his pocket and places in your hand when he's overwhelmed. Make sure to establish rules around this - your child should understand that he can't do it all the time, only when he is feeling overwhelmed.

* Intervene at the first sign of a meltdown by taking your child to another room, and talking him through it to see if you can ease the difficulties. If you cannot solve the problem by talking, then it is time to go home. Do not force him through the negative situation; that is the experience he will remember.

Characteristics of Proprioceptive Dysfunction

Date added: 10/14/2013

excerpted from Answers to Questions Teachers Ask about Sensory Integration: Forms, Checklists, and Practical Tools from Jane Koomar, Carol Kranowitz, Stacey Szklut & Others

The following checklists will help you gauge whether your child/student has proprioceptive dysfunction. As you check recognizable characteristics, you will begin to see emerging patterns that explain the child's out-of-sync behavior.

The child who is overresponsive to proprioceptive input may:

* Prefer not to move.

* Become upset when limbs are passively moved.

* Become upset when it is necessary to stretch or contract his muscles.

* Avoid weight-bearing activities, such as jumping, hopping, running, crawling, rolling, and other physical actions that bring strong proprioceptive input to muscles.

* Be a picky eater.

The underresponsive child may:

* Have low tone.

* "Fix" elbow to ribs when writing or knees tightly together when standing, to compensate for low muscle tone.

* Break toys easily.

The sensory seeking child may:

* Deliberately "bump and crash" into objects in the environment, e.g. jump from high places, dive into a leaf pile, and tackle people.

* Stamp or slap his feet on the ground when walking.

* Kick his heels against the floor or chair.

* Bang a stick or other object on a wall or fence while walking.

* To modulate his arousal level, engage in self-stimulatory activities, such as head banging, nail biting, finger sucking, or knuckle cracking.

* Rub his hands repeatedly on tables.

* Like to be tightly swaddled in a blanket or tucked in tighty at bedtime.

* Prefer shoelaces, hoods, and belts to be tightly fastened.

* Chew constantly on objects, such as shirt collars and cuffs, hood strings, pencils, toys and gum and may enjoy chewy foods.

* Appear to be aggressive.

The child with poor discrimination, postural disorder and dyspraxia may:

* Have poor body awareness and motor control.

* Have difficulty planning and executing movement. Controlling and monitoring motor tasks such as adjusting a collar or putting on eyeglasses may be especially hard if the child cannot see what he is doing.

* Have difficulty positioning his body, as when someone is helping him into a coat, or when he is trying to dress or undress himself.

* Have difficulty knowing where his body is in relation to objects and people, frequently falling, tripping, and bumping into obstacles.

* Have difficulty going up and down stairs.

* Show fear when moving in space.

The child with inefficient grading of movement may:

* Flex and extend his muscles more or less than necessary for tasks such as inserting his arms into sleeves, or climbing.

* Hold pencils and crayons too lightly to make a clear impression or so tightly that the points break.

* Frequently break delicate objects and seem like a "bull in a china shop."

* Break items that require simple manipulation, such as lamp switches, hair barrettes, and toys that require putting together and pulling apart.

* Pick up an object with less force than necessary - and thus be unable to lift it. He may complain that objects such as boots or toys are "too heavy."

The child with sensory-based postural disorder may:

* Have poor posture.

* Lean his head on his hands when he works at a desk.

* Slump in a chair, over a table, or while seated on the floor.

* Sit on the edge of the chair and keep one foot on the floor for extra stability.

* Be unable to keep his balance while standing on one foot.

The child with emotional insecurity may:

* Avoid participation in ordinary movement experiences, because they make him feel uncomfortable or inadequate.

* Become rigid, sticking to activities that he has mastered and resisting new challenges.

* Lack self-confidence, saying, "I can't do that," even before trying.

* Become timid in unfamiliar situations.