Saturday, 21 July 2012


We are all guilty of it....we zone out, we think about what we are going to say next, we ignore....I know my mom, dad, and husband's tone of voice when they have turned off and I am talking to a wall.  My phone at work often acts up, there are times when a patient can't hear my voice, and I have had people continue talking to me for up to 15 minutes without realizing that I haven't said a word in a really LONG time....hilarious.  I have watched  therapists we have seen  zone out....helloooo?  ya there?  Listening is one of my biggest concerns with my boys.

I know, I know, EVERY parent with young kids feels like their kids don't listen to them, don't answer them, don't obey them.  But as I have said in the past, I have called Nate's name 35 times and had him never turn his head.  I can ask Jack to do something 15 times and get the same result.  This is not all the time....they both have more attentive moments and times when they seem to be "gone".  I don't know that this is really about listening so much is it is about lack of joint attention.  Well ok, it's probably about both.

Question: What Is Lack of Joint Attention in Autism?
If you have a child with autism, you may have heard therapists tell you that your child needs to work on something called "joint attention." What is joint attention, and why is it important?
Answer: When you and your child are reading a book together, you are paying "joint attention" to the pictures. When you are reading the book and your child is playing with his fingers, wandering around the room or noticing a bird flying by the window, you may be reading to your child, but your child is not engaging with you. It can be very tough to develop joint attention skills in a child with autism, but of course the ability to attend to a conversation or activity along with another person is absolutely critical. Why is it often hard for kids with autism to build joint attention skills?
Unlike typically developing children (or even children with related disorders such as ADHD), children with autism are often more interested in and engaged by their own thoughts and sensations than by other people or even the outside world. As is implied in the word "aut"ism (meaning "self-ism"), people on the spectrum tend to focus inward rather than outward. While that's not necessarily a problem some of the time, it can limit children's ability to learn through imitation, develop play and social skills, and attend in a learning situation such as a classroom.
Quite a few therapeutic techniques specifically help kids with autism work on joint attention skills; all of them begin with the idea that true joint attention only occurs when both parties actively WANT to pay attention to the same thing. Applied Behavior Therapy (ABA) has been used successfully to build joint attention skills, but developmental and play therapies including Relationship Development Intervention (RDI) and Floortime may be even more effective. While there isn't a lot of research to compare the outcomes of behavioral versus developmental therapy in treating lack of join attention skills, parents will certainly have a lot more fun working with their children through play!
If you're working on building joint attention with a very young child, it's important to figure out, first, what's likely to engage them. Many children with autism respond well to gentle tickles, chase games, bubble popping, and other fun, sensory-friendly, open-ended activities. These can serve as a terrific gateway to back-and-forth play, shared activities such as building with blocks, and much more.

So this is something we have been working on with the boys for a LONG time.  Can I say that it is working?  Not really sure.  For both boys, environment is so key.  If we want to engage either of the boys in an activity there can be NO distractions.  This can be very difficult, because there are constant distractions for these guys in almost any situation- #1?  Their brother.  But on top of that, auditory sensitivity can really contribute to the problem.  There is a belief that kids on the spectrum have a very difficult time, how can I put it, prioritizing sounds.  So, because they are sensitive to sound, a mere ceiling fan going in the room can be enough to keep the boys from completing a project, or responding to a request or question.  So forget trying to engage them at all if the TV is on.  It is also one of the many reasons we avoid busy places.  Not only do the boys get overwhelmed by all of the stimuli very quickly, but they are very unlikely to obey requests such as "stay with me" or "don't touch that".  One of the hardest things for me to remember at times like these is that neither of them are trying or intending to be "naughty".  This is something that they struggle with because of the condition they have.  So frustrated though I may be, will punishment or yelling really help the situation?  Not likely.  More likely, yelling will just escalate the problem by overwhelming them further.  Am I guilty of doing it anyway?  Absolutely.  But every once in awhile I need to step back and remind myself of reality.  Jack and Nate's OT has suggested something called therapeutic listening.  At first I felt like saying, I don't think talk therapy is going to help my nonverbal toddler, but they gave me a handout and now I get it.  This therapy involves listening to recordings on headphones for about 30 minutes several times a day.  The aim of this therapy is to help autistic kids, with underdeveloped nervous systems, differentiate the human voice from other noises in their environment.  See another parent's experiences below.  

Read more:

So this is yet another avenue I am exploring.  It will probably cost us about $250 to get up and running, but really, if both boys ending up needing it, it's likely a good investment.

This is on my mind because kindergarten is on my mind big time.  I am not worried about Nate's school situation right now- those educators deal solely with kids like Nathan, and he is one-on-one daily literally working on joint attention and imitation most of the time.  But Mr. Jack is about to enter the fray of public school to the fullest extent.  Full day, mainstream kindergarten.  15-20 other kids shifting, mumbling, asking questions, answering questions.....hundreds of distractions, many transitions and the longest day he has ever had.  I am so worried about his ability to attend in this situation.  Even last year, in pre-K, the program catered to kids with special needs and the special educator and OT were very involved in the day to day activities.  There is no room for that this coming year.  I keep thinking of full day school as such a good thing for our family, but I am thinking of our daycare needs when this comes to mind, not Jack.  Neurotypical kids are expected to perform at a much higher level today than any of their parents had to at the same age, but it feels so wrong that my little boy with challenges like his is also expected to do the same. We could send him to private pre-K for another year, and we have considered this, but the bottom line is that I am not sure that it will make a difference.  He is going to face the same challenges and distractions for the rest of his life, and I am not sure it will matter if he starts this year or next.  It's going to be tough.  

 I just know that I am going to be holding my breath every day for a long time waiting for a call like "ma'am you need to come pick him up, what were you thinking sending him here".  Of course I waited for a similar call last year too and the only one I ever got involved him scraping his knee on the playground and an obligatory call from the school nurse informing me of the "incident".  I don't think the school nurse had to call for every bump when we were kids did they?  Figures....isn't there like 1 nurse for three schools now as opposed to 1 at each school when we were kids?  So of course we would expect them to do MORE.  It's the culture of our country and lawsuit happy society. OK, off my soapbox now.  Feeling a little bitter that my work calls are now recorded.  Luckily I work with a great team, and when we called in to our daily conference call last week, one of my coworkers inadvertently started singing In-A-Gadda-Da-Vida just entertain anyone who might be listening.'s so nice to feel like a professional.  

So anyway, as always I am a nervous wreck, haha.  One advantage of watching the boys battle with joint attention and listening?  I am becoming a much better listener.  I have been catching myself thinking of other things, or what I want to say when someone is talking to me and correcting.  Really making the effort to listen.  If you haven't done this lately, try it.  It's actually very relaxing.  Even if it's all about propellers and BF-109's.  

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