Preparing for Daily Transitions Helps Children with Special Needs

Back in the day when I was a student teacher in a kindergarten classroom, I learned a lot of songs and games to use to help my students transition from one activity to the next.  They were fun ways of getting the children to pay attention and do what was needed to clean up and get ready for the next thing.  Like spraying magical dust upon them, it worked miraculously!  At the time, I had no idea what I was doing was assisting the children with transitions by providing them a secure routine which they understood and knew what was expected of them.  In my new teacher mind, I was simply doing what I knew worked to keep those thirty little munchkins from chaos!

Children do not like chaos!

As a parent of a child with special needs, I truly learned that children don’t like chaos any more than anyone else.  Since their worlds are mostly controlled by the adults in their lives, they might feel like the world around them is chaotic when things suddenly seem to happen and everything changes quickly – too quickly - and they don’t know why or what is going on.  These changes are transitions.  Every day we go through multiple transitions; some go smoothly and some knock us around a bit.

It only goes to reason that if all children can feel the world around them is moving quickly and unpredictably, how much more so does the child who processes things slowly or differently.  For the child with Auditory Processing Disorder or Mixed Receptive Expressive Language Disorder, language may be less than 50% understandable at times. Noises and movement in the environment may make things seem encroaching upon a child and always worrying that they just don’t understand can make the world seem out of control – chaotic.  So when a transition, a change from one activity or place to another, is suddenly thrust into the middle of an already somewhat chaotic feeling world, it can simply be too much.  The child understandably reacts with a meltdown.

Case Scenario:

When our daughter was very little, before we realized the significance of transitions, she would cry, get scared, panic, and grab me with such intensity her fingernails would embed into my skin.  In our adult minds it made no sense.  We had told her we were going to the store.  So when we put her shoes on and put her in the car, why did she suddenly freak out?  If we had only stopped to think about how it might have seemed from her point of view, we wouldn’t have been so shocked, and we would have been able to prevent it.  Eventually, with the help of our occupational therapist, we did.

From her point of view, she was sitting playing nicely with her toys in the comfort of her living room.  She heard some blah, blah, blah talking, but who knows what that was.  Then we came with shoes and put them on her feet.  She never had to wear shoes in the living room before, so that seemed weird. Besides, shoes aren’t comfortable.  Somewhere in the recesses of her mind she remembered wearing shoes before and it involved going outdoors, but maybe she sort of remembers this and maybe she doesn’t.  Suddenly we are picking her up and putting her in the car.  She was in the middle of playing and she didn’t want to stop playing.  She hates car rides because they are loud and sometimes there are weird smells.  Cars stop and go and things whiz past outside.  Moreover, she doesn’t want to go anywhere: home is predictable, usual, has the same sounds, smells, people, etc.  Other places are stressful, loud, smell funny, and may be too cold or too hot.  Even more frightening, what if people try to talk to her?  What if they touch her?  What will be expected of her?  Leaving home is always stressful and she wasn’t prepared.

Preparing for Transitions Does Wonders!

So we learned how to best prepare her for transitions.  We learned to use picture cards to show her the car and the store.  We told her we would be going in the car to the store.  We gave her time to process this information.  We helped her put away her toys.  We made sure she had her special blanket and her special chew toys.  We showed her the pictures again.  We encouraged her to repeat to us what we were doing. We reassured her that she was safe and we would be with her with our words and with pictures of us at the store with her safely sitting in the cart seat with her blanket and mommy beside her.  Yes, it took some time.  Yes, we had to plan and prepare for transitions.  It was well worth it!  They went smoother and without meltdowns – visibly she was still stressed, but they weren’t full-on panic meltdowns.

She still had to deal with the stress of being in the car and at the store.  She had to feel the panic when the cashier made eye contact and tried to talk to her.  We also learned sensory calming techniques to help with these things as well – her special blanket with scents on the corners and a vibrating chew toy or spicy candy, rubbing her hands, and speaking for her to the cashier (yes, she is a sweetheart – do I swipe my card here?) while comforting her all helped significantly.

It Gets Better With Time:

Okay, for all you poor panicked souls who are fearful that life will always be this difficult with your young, sensory sensitive child who processes things differently; I have some hope to offer.  This scenario I just described was our daughter at 2-3 years of age.  Today, at 11 years old, she is nothing like this!  She rides well in the car, she loves to go shopping, and she mostly does well responding to the cashiers.  She still hates to be rushed (she needs time to emotionally prepare she tells us) and wants to be told exactly what and when we are doing things.  Mostly we can tell her in words, but if it is a long list or complicated, we usually draw/write a flow chart or list.  And I have not had fingernails or teeth embedded into my skin for at least 7 years!

Suspecting Auditory Processing Disorder in Young Children

Lately I have come across a number of people who are new to auditory processing disorder.  These are people who have very small children who exhibit signs that might be indicative of Auditory Processing Disorder (APD).  I remember when my daughter was young and we knew something was not working right for her, but we weren’t sure what to do about it.  It was a scary, stressful time.

When our daughter was two, we noticed that not only did she not speak, but she didn’t seem to understand anything we told her.  She has a twin brother and he was speaking in sentences, telling us stories, and in every way communicating well.  We wanted to believe that she was just a late bloomer, but when she started tantruming from frustration, screaming from noises we could barely hear, and staring glazedly into space – absolutely checking out from reality – we knew something was not right. (When looking back on it, we realized that she actually exhibited signs as early as a newborn, but we didn’t know at the time what we were looking at.)

I started keeping a diary of her life.  I wrote down what she did or didn’t do that seemed unusual to me.  It didn’t take long to see a pattern emerge.  She didn’t understand what people said.  She was afraid of noises and voices.  She not only spaced out regularly, she did other odd things like smell everything, put things in her mouth, keep food stored in her cheeks, walk with her arms out at right angles, stand with her head on the ground down between her legs, play with her tongue in her mouth, constantly wiggle her fingers, not make eye contact, and try to avoid all people other than her immediate family. 

So I started researching and found out about our state’s infant and early childhood program.  It is a program that provides services such as speech therapy, occupational therapy, etc. to infants and children below the age of three.  They sent an evaluator to our home and decided that our daughter qualified for their services, so we started speech therapy and occupational therapy.

From our occupational therapist, we learned about Sensory Processing Disorder and started a sensory diet for our daughter.  This included physical activities as well as special foods that seemed to calm her and help her to not space out so much.  With a strong sensory diet, she made better eye contact, didn’t tantrum or space out so much, did less odd behaviors, and in general was a much happier and accessible child.

Our speech therapist was working actively on trying to get our daughter to speak and to better understand the spoken language.  I felt there had to be a reason that she didn’t understand, so we went to an audiologist to get her hearing testing.  Her ability to hear sounds was completely normal; she had no hearing loss.  So I started to research and found a disorder called Auditory Processing Disorder.  Our daughter seemed to fit this description perfectly.

I contacted a leading specialist in APD and set up a consultation appointment.  What I found out was that she was too young to be officially tested, but he was more than willing to look over my diary of her and meet her for some informal evaluations.  It didn’t take long for him to believe that she most likely did indeed have APD and that although he could not formally give her such a diagnosis, he felt it was accurate to believe she did have it, and we should start working towards helping her as much as possible.  He gave us a lot of information as well as some techniques to use with her such as always making eye contact, speaking in clear short phrases rather than sentences, watching for signs of stress in her particularly in noisy environments, and to realize that she will most likely not be able to understand what is being said if multiple people are talking at the same time- such as in a restaurant or at a family gathering.

With this information, we informed our speech therapist and occupational therapist who immediately researched Auditory Processing Disorder and tried to incorporate their new knowledge into their therapy.  Our occupational therapist started our daughter on a listening therapy program and our speech therapist introduced us to the use of picture cards to assist with communication.  Both of these things proved to be extremely useful.

At age three, our daughter transitioned into the school district’s early childhood special education program.  She went three mornings a week where she had access to a special education teacher, speech therapist, occupational therapist, physical therapist, and direct instruction and experience in socialization.  Although it was stressful for her to go, she did show great improvement by going there – particularly in socializing.

So this was our start to living with Auditory Processing Disorder (and Sensory Processing Disorder).  If I could give any advice to parents of young children who are exhibiting signs that something just isn’t right, I would say start a diary.  Write down what your child is doing or not doing that seems distressing or odd.  In time, you will see patterns.  You can use these patterns to access the services and help you need.  If you live in the United States, contact your state’s infant and early child program if your child is under the age of three; your pediatrician or local school district should be able to give you the contact information.  If your child is aged three or older, contact your local school district.  These agencies have specialists that can help get you started on the path to helping your child.

APD Mishearings Can Sometimes Be Hilarious

Today I thought I would try to post something light-hearted and humorous. Living with a child who has Auditory Processing Disorder has it's moments of downright belly jiggling laughter.  You see although all children mishear things some of the time, because APD makes it difficult to process what is said, children and adults with APD can do it a lot of the time.  Sometimes the results are hilarious.

Sometimes, we keep the laughter to ourselves as there are emotions involved.  Sometimes, we go right ahead and laugh as our daughter herself finds them funny and can see the humor in it all; of course we take her cues before laughing. (I think it might have accidentally become a game as well because sometimes I find all the kids saying things to make people laugh as if they misunderstood something. We all play along and laugh at our funny misunderstandings.)

So here are a handful of misunderstandings by our child and others that we found funny:  

• We were watching the show “The Middle” on television.  The oldest son in the show is named Axel.  Our daughter turns to us and asks, “Why did they name their son Asshole?”

• We were driving in the late afternoon and I said, "Oh no, we are in rush hour!" I heard my daughter’s little worried voice reply, "We’re in Russia?"

• I told my son to go and brush your teeth.   He said very excitedly, "We are getting a tent?”

• I was looking in the fridge and asked my son, “What happened to the cheese?” He replied, “I’m wearing my jeans!”

• I was covering my nose with my hand and heading towards the bathroom.  My daughter asked, “Why are you hiding your nose?”  I answered, “My nose is running.”  She tilted her head and with wide, expressive eyes said, “I don’t think your nose looks funny.”

But on a more serious note, these little misunderstanding are just the tip of the iceberg for people with auditory processing disorder.  They are funny examples of how they mis-process words they hear all the time and have to try to make sense of very mixed up language.

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(I'm adding on to this article whenever I find more funny moments.  So below are ones that I've heard of since the original publication of this post.  Enjoy!)

• My daughter asked, "Why do those hobo witnesses keep coming to our door?"

• I was trying to retrieve the word insane asylum or sanitarium
  What I retrieved instead: Insane aquarium

• My with APD asked, "Mom, what is an alibi?" So I gave her a definition. Her response was, "Oh, I thought it was the song you sing to a baby"

• Funny APD Moment: I was very crabby this morning. My mom told me to beware of Negative E. My response is who is Negative E? Is that an evil Santa Claus or the Boogeyman, or maybe an evil Easter bunny? Apparently I was getting flustered, because my mom laughed and explained that she'd said "Negativity".

• My child with APD used to tell me she was so afraid of the potato. I couldn't figure it until she was watching the weather channel one day and showed me what she was talking about - tornado!

• Child with APD: "Fear my raft!"
  Mother:  "... what?" 
  
  Child with APD: "Fear my raft!" 
  Mother:  "OH! It's wrath! Fear my wrath. Watch my lips.. W-R-A-T-H."  
  Child with APD:  "OOOHHHH! That makes so much more sense!
  
  
  
  

It Shouldn't Be This Hard: How One Girl with APD Learned to Read

“If I didn’t have Auditory Processing Disorder, I bet I would be able to read college level books by now.  I wish I didn’t have Auditory Processing Disorder.  It makes things so hard.  It’s not supposed to be this hard.”  Tear paths slowly appear on her cheeks as she lets out a barely auditable sigh.

Reading has been a horrendously difficult hurdle for my daughter with Auditory Processing Disorder (ADP).  You see one aspect of APD is auditory discrimination problems.  Auditory discrimination is the ability to detect the distinct and separate sounds in words.  Teachers call this phonemic awareness, and preschoolers and kindergarteners play games to identify the first consonant sound in a word or to rhyme small, one syllable words.  This, sensibly, leads to the skills needed to learn phonics.  Phonics is the method of teaching people to read through the recognition of letter patterns and the sounds they represent.  It is the most prevalent method to teach reading as it is highly effective.  With the knowledge of phonics, a person can read just about anything without having to have seen a particular word written before.

So with my daughter Hailey’s very real problems with auditory discrimination, she could not identify onset consonants, rhymes, or even hear the differences in many letter sounds.  For instance, /p/,/b/, /d/, /t/ and /g/ all sound the same to her.  As well as /nk/ and /ng/,  / f/, /s/, /v/, /sh/and /th/,  /a/, /e/ and /o/.  So no matter how many games we played, and no matter how much her private speech therapist worked with her on phonemic awareness, she could never distinguish the letter sounds.

Having more in my arsenal of techniques for teaching reading by having been a first grade teacher for many years, I decided to try the sight word approach.  So Hailey and I started playing games with flashcards.  We acted out words; traced words; made words with playdough; wrote words in the air; played memory with the cards; made stories with the cards; and similar type activities.  This was loads of fun, but it didn’t transfer over into reading.  Sure she could memorize a few words, but it took months to memorize just a few words.  Learning to read like this would be completely impractical.  You see, Auditory Processing Disorder (ADP) has another aspect: short term/working memory problems.  So Hailey has to repeat something, particularly something to do with auditory input, over and again until it finally is locked comfortably into her long term memory and the path to retrieving it is well defined.

So my spouse and I took her to see a neuro-psychologist.  We wanted to know what she could determine to help us teach Hailey to read.  Well, sadly we paid this woman way too much money for her to tell us that Hailey would probably never learn to read and we should focus on “life skills” instead.  Of course, we didn’t listen to her, and I started researching all I could find on reading.

I came upon a program called The Lindamood Phoneme Sequencing® (LiPS®) Program.  This program teaches children to learn the specific feeling of their lips, teeth, mouth, and breath when making each particular letter sound.  They also learn to identify the sound by “reading” other people’s mouths when they make the sound.  It seemed like it might work.   However, the program done at the Lindamood Bell Centers was extremely costly, and we really couldn’t afford it.  Knowing we would find the money some way if we had to, I started to look into private reading specialists first.

After scouring the Internet, I found a few people in my area who operate as private reading specialists and/or tutors.  I interviewed three and found the one I wanted to try.  She had been a reading specialist for the schools and was now retired.  She had been trained in the LiPS program and would love to work with Hailey.  So off we went to start the process.  It was amazing!  This program was the magic pill that enabled Hailey to read.  She took to it immediately and voila!  Her problem with auditory discrimination was not going to hold her back from reading.

So now Hailey has been reading for about two years.  She can decode absolutely any word and she loves to work in phonics based multisyllabic word workbooks.  As a bonus, her spelling is actually quite good due to her strong phonics skills, and she spends a great deal of time writing.  Of course, she still has the short term/working memory issues associated with Auditory Processing Disorder, so she spends a large amount of time phonetically spelling words and/or looking them up in the dictionary. 

So why is Hailey still crying about reading?  Simply this: she reads multiple times every day and yet it is still difficult.  As she puts it, “I see the word people and I have to sound it out every single time.  It just doesn’t stick in my head like it should.  I have to read a word hundreds of times to remember it.  My brother, he reads a word once and he remembers it.  He reads less than half the amount of time I read and he can read bigger words and faster.  It’s not fair.  It shouldn’t be this hard!”  This, again, is that short term/working memory problem that is a part of APD.

A third problem with Auditory Processing Disorder is filtering out background noise.  Hailey hears all those little sounds that are around us all the time: the furnace kicking in, the dog licking her paw, someone in the next room talking, a neighbor mowing his lawn,etc.  She finds it incredibly difficult to have to concentrate on reading when all those other sounds keep bombarding her.  So I finally broke down and bought her noise reduction ear muffs.  I was worried about her getting dependent on them and I wanted her to strengthen her ability to filter out background noises.  However, she wanted to focus on reading and she felt this would make a big difference to her.  They do help and she is much happier with them.

Surprisingly with all the intense work that it takes to read, Hailey still thoroughly enjoys reading.  She loves fiction and she finds that she remembers better the non-fiction that she reads versus what she has heard.  She has perseverance greater than I have ever witnessed in anyone before or since.  She is determined to not let her Auditory Processing Disorder stop her from doing all that she wants to do – including one day reading college level books.  For this, I admire her. 

So she says if she didn’t have Auditory Processing Disorder, she would already be reading college level books.  I say if we all worked half as hard as she does, it’d be amazing the things we could accomplish.  

What Can Psychologists Do Better When Working With Children With Special Needs?

I solicited some people on a couple of my Facebook communities for people or parents of children with Auditory Processing Disorder.  My purpose was to get input for my sister-in-law who supervises students practicing to be licensed therapists. 

Here is my original question and the wonderful, thoughtful responses I received.  I also left the number of Facebook likes to show how many people pushed “like” to show their agreement with the response.

“Please give me your thoughts: My sister-in-law is a supervisor of students practicing to be licensed therapists. She wants to know what things can therapists (as in psychologists) do better to help children with special needs?”

Yvonne:

“I think the most helpful thing any therapist can do - is to do their best to remove their biases - and remember although labeling may help get services - labels hurt kids/all people - correct diagnosis is so much more important.”

Facebook Likes : 2

Jennifer:

“It is important to look beyond the label and the list of recommended treatments and find out what the individual child needs. The label should only be a starting point as to what to look for. The therapist needs to dig and explore and figure out what is needed to treat and recover.”

Facebook Likes:  2

Kelseigh:

“Educate themselves. Yes, they're practicing and learning to be therapists, but that doesn't cover everything they're going to encounter out in the real world. If they weren't taught about a certain topic or forgot it, they still need to be responsible for that knowledge.”

Facebook Likes:  1

Hannah:

“Growing up with special needs I wish people would research the special need(s) more and try to better understand what it is like to have special needs.  My recommendation is to talk to someone who has the specific special need, if possible, to get a feel of what it's like in their shoes. Empathy is the best thing someone's ever given me.”

Facebook Likes:  3

Catherine:

“I would suggest they remember that behavior is communication. Everything a child does has a purpose. We have to figure out what they are trying to tell us, then teach them how to tell us more efficiently.”

Facebook Likes:  3

Nancy :

“Listen to parents and don’t disregard their feelings or thoughts or treat them like they know nothing, and don’t say negative things in front of the kids. Also follow up - maybe after a child has left care, a month later ring and ask how things are going.”

Facebook Likes:  5

Salina:

“Trust a parent's instincts.”

Facebook Likes:  6

Molly:

“Get hands on experience working with special needs children prior to becoming a qualified psychologist.  Also it would help to work with adults with special needs in order to get the bigger picture of our kids as adults!”

Facebook Likes:  5

Molly:

“Be prepared to commit to long-term therapy, as many of our kids can’t handle changes in staff.”

Facebook Likes:  4

If you have any other thoughts you would like to include, please post them in the comments.  Thank you.

She Will Find a Way to Make Herself Heard

Today I read a blog post which reminded me of my daughter when she was about five or six years old.  Her twin brother and she were working on learning to add as well as understand the concept of basic place value.  We had a hundreds chart taped to the wall which we used as a visual reference.  Of course, we also used other items and multi-sensory approaches, but the hundreds chart ended up playing a more significant role than I ever could have imagined.

My daughter, because of her auditory processing disorder and language issues, was still having a difficult time knowing the words for the numerals.  So she could see 5 and know that meant 5 objects, but she couldn't remember how to say "five".  She also couldn't identify the numeral 5 when I said "five".  It was frustrating for her, to say the least.

One day an amazing thing happened that really showed me how intelligent and creative my little girl really is.  She started pointing to numbers on the hundreds chart in a specific way.  She wanted me to watch her, and she was obviously trying to show me something.  So I kept watching and it finally dawned on me:  she was adding!  Yes, she was pointing to numbers in a sequence such as 4, 5, 9 or 3, 10, 13 and she kept doing this over and over again until she felt I understood her.

It was one of those enlightening moments in our lives.  I'll never forget it and since then, I have always trusted that she will find a way to make herself heard. 

Nurturing Self-Esteem in the Child with Special Needs

I recently solicited some friends on ideas for blog posts/articles.  One friend suggested writing about helping children with special needs build and maintain a good sense of self-esteem.

So off I went to research self-esteem and children with special needs.  I found a treasure trove of wonderful articles and eventually decided to focus my post around Maslow's hierarchy of needs and the article "The Need to Belong: Rediscovering Maslow's Hierarchy of Needs" by Norman Kunc.^*

As you can see from the diagram above, Maslow positioned that self-esteem is reliant upon a sense of belonging.  Norman Kunc, in his article mentioned above, explained, "Without a social context in which to validate a person's perceived worth, self-worth is not internalized.  The context can vary from small and concrete, as with babies, to universal and abstract, as with artists."^*

So a baby feels belonging by being loved and cared for by his or her family.  The baby is treated as a valuable member of the family.  A child belongs to a family as well as a group of friends, a team, a class, and others which provide a sense of community to that child. Adults belong to families, friends, neighborhoods, work groups, associations, etc.  It is through a secure sense of belonging that humans feel recognized, respected, and valued as members of that community.  These feelings are internalized as healthy self-esteem.

However, as Norman Kunc points out, our communities must be accepting of diversity and find value beyond the currently narrow definitions of achievement, success, appearance, and other socially driven categories: “Yet in our society, we draw narrow parameters around what is valued and how one makes a contribution….Instead, we [need to] search for and nourish the gifts that are inherent in all people.”^*

So, how does this relate to nurturing and helping to maintain healthy self-esteem in children with special needs? 

Children with special needs often run into difficulty with self-esteem when they begin to realize that they are different from their peers.  Sometimes this comes in the form of bullying whereby the child is told he or she essentially does not belong to the group and is not wanted.  Sometimes this comes from the child him or herself identifying how different he or she is, and the child starts to isolate him or herself from the group out of fear of not belonging.  Both of these scenarios create the feeling of unworthiness and thus hinder self-esteem.

Another thing that happens to children with special needs is when the group to which the child belongs values only certain traits in its members.  This might be academic achievement in school, athletic achievement in a sport, or appearance in a social group.  The child who cannot achieve at the level required for these groups begins to not feel valued as a member of the group. This leads to doubts of self-worth.

These problems of being different and not being able to meet the goals defined as necessary to be a member of the group are how our current society fails in providing a sense of authentic belonging to all people.  To change this dynamic, society needs to encourage diversity and honor all the contributions people can make.

However, this post is not about changing society.  This post is about helping children today, in this society, maintain self-esteem.  So, if a sense of belonging and providing value to community is the building block upon which self-esteem sits, it only makes sense that we need to provide this for our children with special needs. 

So here are a dozen suggestions generated by myself and the ideas I garnered from my internet research:

1. Make sure you have a home life that values all members and all contributions without placing a hierarchy of value;
2. Provide a way for your child to contribute to the family in a way your child feels is valuable;
3. Find an activity or a group that your child can feel a welcome member of:
• A sport your child is good at;
• Chess club, book club, a role-playing game club, or any other activity your child enjoys;
• Drama, an art class, an environmental clean-up crew, etc.;
4. Talk to your child’s teacher or group facilitator about making a point of honoring diversity and multiple talents;
5. Make a point of having people in your child’s life who demonstrate respect for diversity and multiple talents;
6. Provide your child with a group identity to belong to such as artist, writer, good helper, etc.;
•  This can be done without having a specific group of people as in these groups one can be a member simply by doing art, writing, helping, etc.; 
• You as the parent can be the one expressing how valuable the child’s art, writing, helping, etc. is to you as a family member, as a person who likes art, writing, etc., and as a member of the greater society;
7.  Expose your child to the variety of ways in which people contribute to and are needed by the greater society and are valuable: street cleaners, doctors, artists, musicians, comedians, athletes, moms, dads, social workers, custodians, activists, therapists, dog lovers, environmentally conscious people, people who smile when we pass them in the store and they make everyone feel happier because of it, etc.;
8.  Find a way your child can contribute to a cause such as a favorite charity, helping at a soup kitchen, cleaning up the park, etc;
9. Educate your child on why people bully;
10. Help your child find value in identity as a member of his or her cultural, ethnic, or religious community;
11. Show your child other people with differences (disabilities/differing abilities) who are doing well and feeling happy with their lives.  They can be an excellent role model for your child; and
12.  Find a peer group of children with the same or similar differences to your child. It can be empowering to feel a part of this community as well.

This is a dynamic list and I welcome all suggestions to add to it.  Please post any you have in the comments as I would love to read them.  I hope you find some of them helpful. :)

^*Kunc, Norman.^”The Need to Belong: Rediscovering Maslow’s Hierarchy of Needs.” Broad Reach Training and Resources <www.normemma.com/articles/armaslow.htm>

Vibrating Chair

I started this blog with the intention of making it all about Auditory Processing Disorder, but as I've come to realize, I can't really isolate Auditory Processing Disorder from the other processing and learning differences that my sweet daughter has as well.  Like a lot of children with Auditory Processing Disorder, Hailey has other differences such as Sensory Processing Disorder, which is where this post on vibrating chairs fits in.

Recently Hailey has been having more difficulties falling asleep and staying asleep at night.  When she was an infant and young child, we went through tons of vibrating bouncy chairs and then vibrating pads for her to lie on.  She loved the feeling of being vibrated, and it was the best way she could get calmed enough to fall asleep.

When she was an infant, we happened upon the vibrating effect quite by accident.  We found that she would actually cry to be put in her vibrating bouncy chair.  She would sit in it and happily play with toys; interact better with us by making eye contact and smiling; and then would drift peacefully off to sleep in it.

Of course, the chairs would eventually stop working and we would buy another one.  Once she got too big for them, we started buying vibrating pads to lie on, however she didn't like them as much and really only used them before bedtime to get more sleepy.

Around age five, her last vibrating pad stopped working and since she hadn't been using it as much anymore, we decided not to replace it; she was getting to sleep on her own without it.  (She still had vibrating chew toys that she used when she felt stressed out.)

Now, five years later, she is starting to have difficulties with sleep again.  Maybe it's the onset of puberty causing it, maybe it's the stress of transitioning from being a child to a pre-teen, or maybe it's the social difficulties of the pre-teen/teen years.  Who knows really?

So we bought her a vibrating chair. (Comfort Products 60-0582) It's one marketed as a massage chair and it has eight rotating gears that provide a vibrating sensation.   She loves it!  Not only does it help her to sleep, she also uses it to just relax when she's feeling stressed or overwhelmed.

Auditory Processing Disorder: "A Manifestation of Impaired Neurocognitive Processes" and "One Factor in the Overall Profile of Different Developmental Disorders"

After weeks of intense researching on Auditory Processing Disorder, I finally found an article that takes all that research and makes a cohesive analysis.  Yippee!  I love it.  It is titled "Communication Disorders: Auditory ProcessingDisorders."¹

Why The Intense Research:

So, let’s start from the beginning.  I wanted to research what the current thinking is on Auditory Processing Disorder because it seems to me that my daughter, as well as many of the other children I am learning about through my Auditory Processing Disorder (APD) groups, seems to have more than just auditory processing problems. Moreover, the label Auditory Processing Disorder is controversial and not recognized in the United States as a disability in and of itself.  My concern is that my daughter, and all other people with the diagnosis APD, will not get the accommodations she needs at places such as school (not related to us as we homeschool), college (possibly in the future), and work (when she's an adult).

My daughter has all the usual problems associated with APD: difficulty localizing sounds in space, discriminating sounds, recognizing auditory patterns, responding to the temporal aspects of sounds (integration, discrimination, ordering, and masking), and extracting auditory information in less than ideal auditory environments.  She also has the common attributes of APD of short term memory deficit and auditory recall problems – including word retrieval. 

Like many children with APD, she has also been given additional diagnoses that coincidentally are the same diagnoses given to many other children also diagnosed with APD:  Mixed Receptive-Expressive Language Disorder, Phonological Disorder, Attention Deficit Hyperactivity Disorder (ADHD) - only inattentive type, Sensory Processing Disorder, Visual Processing Disorder, Dyslexia, and the very broad term neurologically atypical.  She was also suspected of Autism when younger by two pediatricians and ruled not Autistic by a pediatric psychologist. 

Like a lot of children with special needs, she has had a variety of diagnoses and probably could have a variety more if we only brought her to the right specialist who would somehow find a way to make her fit the categories he or she is looking for.  Personally, I find all these labels just weird little note tags at this point that all say: She has a problem with her brain and it affects her academically and socially.  We notice it affects these particular areas and we don’t know what causes it or what to call it.  It seems similar enough to these diagnoses and not similar enough to these.

Moreover, when researching each of these specific diagnoses, it is readily apparent that there is a lot of overlap among them.  So how can one really differentiate where one begins and the other ends?  This has been a question that has plagued me for some time. 

How This Article Helps To Shed Light On the Confusion:

Now, on to this article which seems to make sense to me:  Karen Banai and Rachel Yifat, the authors of the article, “Communications Disorder: Auditory Processing Disorder,” have gathered the loads of research results from various testing being done on APD as well as similar disorders around the world, and written their interpretation.  To my understanding of their article, it seems that APD is most likely a “manifestation of impaired neurocognitive processes”² and it seems to mostly be related to impaired attention processing and impaired context processing.³   APD relates to ADHD in the impaired attention processing.⁴   APD relates to Dyslexia and other language disorders, such as Specific Language Impairment (SLI), in impaired context processing.⁵

Furthermore, it is believed a possibility that APD is “one factor contributing to the overall profile of symptoms in different developmental disorders.”⁶   This makes huge amounts of sense to me as it seems to me that many children with APD also have other issues, i.e. Sensory Processing Disorder, Visual Processing Disorder, Autism Spectrum Disorder, and those that seem to overlap with APD such as ADHD, SLI, and Dyslexia.

All of this research, in my opinion, suggests that it does not matter what diagnosis you give to a child and that perhaps the diagnoses themselves are flawed and limited in their criteria.  What matters is that you do what you can to provide the interventions and support each child needs to be as successful as possible at academics, as well as living life in general, including socializing.  As Banai and Yifat put it, “The reservations… concerning the necessity of the separate diagnosis of APD should not obscure the troubling fact that no matter what diagnosis they have received, the outcomes for many children with learning disabilities (estimated at 25% by Hatcher et al., 2006) even following gold standard interventions are not encouraging.” 

My Lesson Learned as a Parent:

The experts haven't figured it all out and really don't understand the brain and its processes well enough at this point to agree upon proper labels, categories, causes, etc.  So, stop worrying about the diagnoses and concentrate on helping my child academically, socially, and with life in general.  Look at her particular needs and address them on an individual basis.  When she gets ready to go to college, get a job, or do anything else that requires us getting special accommodations, well, let's hope the rules are less stringent than they are now, and they'll look at her as an individual and what she can/cannot do, rather than as a list of diagnoses.

Citations:

^{1Banai K, Yifat R. 2011. Communication Disorders: Auditory Processing Disorders. In: JH Stone, M Blouin, editors. International Encyclopedia of Rehabilitation. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/249/}

^{2”Another option is that what appears as APD is merely a manifestation of impaired neurocognitive processes such as auditory attention or memory which lead to difficulties in challenging listening conditions.”}

^{3”Taken together, it seems that auditory processing deficits are part of the clinical picture of several developmental disorders, including dyslexia and SLI, even though causal relationships are poorly understood. Theoretically, this clinical picture suggests several possibilities. One option is that poor auditory processing is one factor contributing to the overall profile of symptoms in different developmental disorders (Dawes and Bishop, 2009). Another option is that what appears as poor auditory processing actually reflects a problem in other cognitive processes such as attention or context processing.”}

^{4”Finally, the findings of one study suggest that children diagnosed with APD were distinguishable from children diagnosed with ADHD in terms of their verbal memory spans (Maerlender, 2007), but neither auditory attention data, nor information on other aspects of performance were provided. Therefore, the lower memory spans in the APD children could have been a part of a more general disorder involving both language and attention. Indeed, it has been shown that both ADHD and APD are associated with high incidences of inattentive and distracted behaviors (Chermak, 2007).”}

^{“However, a careful analysis of performance on the auditory tasks revealed that poor performance typically results from poor auditory attention, rather than from a specific deficit in the spectral or temporal analysis of sound (Ferguson, Riley, Ratib, Edmondson-Jones, and Moore, 2009).”}

^{5”Furthermore, there are few apparent differences between children diagnosed with APD and those diagnosed with dyslexia or language problems on measures of both auditory and language processing (Dawes et al., 2009; King, Lombardino, Crandell, and Leonard, 2003)”.}

^{“In particular, individuals with dyslexia perform poorly on tasks in which performance in the general population benefits from the consistent presentation of repeated anchor stimuli, consistent with the idea that individuals with dyslexia are not making as efficient use of the context of recently presented stimuli as does the general population (Ahissar, Lubin, Putter-Katz, and Banai, 2006).”}

^{6”Taken together, it seems that auditory processing deficits are part of the clinical picture of several developmental disorders, including dyslexia and SLI, even though causal relationships are poorly understood. Theoretically, this clinical picture suggests several possibilities. One option is that poor auditory processing is one factor contributing to the overall profile of symptoms in different developmental disorders (Dawes and Bishop, 2009). Another option is that what appears as poor auditory processing actually reflects a problem in other cognitive processes such as attention or context processing.”}

Reading While Others are Talking Nearby: By Hailey

"I cannot read with people talking.  All I hear in my head while I am trying to read is blah, blah, blah....Okay, Mom, you write the rest." - Hailey

Hailey (10) wants to express that when she is busy trying really hard to read by decoding new words and recalling old words, all the while making her eyes focus properly on the words and not skip any (she has mild Visual Processing Disorder as well), she cannot drown out any auditory background noise.  The only way she can read is to be somewhere quiet.  Maybe with time and practice she will get to the point where she can, or maybe not.  Whichever is the case, she loves to read and so treasures her ability to read without people talking nearby.  She felt this was important for people to understand about Auditory Processing Disorder and how it affects her ability to read.

Temple Grandin : My Daughter's New Hero

"Temple Grandin (born August 29, 1947) is an American doctor of animal science and professor at Colorado State University, bestselling author, and consultant to the livestockindustry on animal behavior. As a person with high-functioning autism, Grandin is also widely noted for her work in autism advocacy and is the inventor of the squeeze machinedesigned to calm hypersensitive persons." Wikipedia


HBO made a movie about Temple Grandin in 2010 that my daughter with Auditory Processing Disorder has found extremely inspirational!  In fact, she tells everyone she meets how they should watch this movie and how amazing a person Temple Grandin is.  I do believe my daughter has found a role model in Ms. Grandin and honestly, it makes my heart soar!  Thank you HBO for providing my child with a glimpse into the life of a true hero whom she can relate to and aspire to emulate in her perseverance, attitude, and bravery.

At my daughter's recommendation, please watch "Temple Grandin".  Here is a link to HBO's site on the movie: http://www.hbo.com/movies/temple-grandin/index.html

You can buy it from Amazon:

Those So-Called Experts

(This was a document I found while cleaning out my computer today.  I wrote it about a year ago.)

Have you ever had that happy feeling when someone says something you knew all along and yet never seem to hear from others?  If you are the parent of a child with special needs, you’ve probably had ‘expert’ after ‘expert’ tell you all sorts of scary things about your child.  Sometimes, what they say is difficult to hear, but it is true and you just have to come to terms with it.  However, sometimes, what they say is absolutely wrong – no matter how much authority they say it with- and you want to jump out of your chair and strangle them.   Or is that just me?

You see, my daughter was born prematurely at 32 weeks gestation and since the day she was born, she’s had diagnoses, interventions, and all sorts of tests and ‘expert’ opinions.  Over these past ten years, I have come to realize that those ‘experts’, like all people in this vast world, are first and utmost PEOPLE.   Some are really good at their jobs and some, well, just seem to be either unaware of current research, not interested in doing more than the basic “let’s find an easy catch all diagnoses”, or in some cases perhaps just have an off day.  It happens!  But as a parent, I’m entrusting these experts with my child, one I love so dearly, and I need an A+ expert all the time.  Hopefully I’m choosing experts better these days – doing my research and not accepting anything I know is “not my daughter".

So now to that very, very happy feeling I had today with the latest expert on our special needs journey.  Today, I saw the developmental optometrist about my daughter’s visual processing disorder.  She said those amazing wonderful words every parent wants to hear: “your daughter is very smart” and “the reason she compensates so well is she is bright enough to figure out ways to deal with her difficulties.”  Wow!  Did I hear that right?  MY daughter is “VERY SMART”?   You see, it’s not that I don’t believe it.  It’s just that I have believed it for the past ten years and yet I have had at least a half-dozen ‘experts’ either suggest or even tell me outright that she isn’t.  I have been the one telling them how smart she is – defending her from their ‘expert’ opinions.  It was like sunshine after a cold, dark winter.  I wanted to jump across the desk and kiss her; she saw my daughter the way I see her!  Finally!

                 

"Sometimes, it just drops."

My ten year old daughter with Auditory Processing Disorder wants me to let people know that sometimes the things she knows just "drop" from her head.  She says this especially happens with math.

So I thought today I would try to explain what she is talking about.  With Auditory Processing Disorder (APD), the short term memory is affected.  Recalling information can be extremely difficult and to the outsider, it can appear as if the person with APD knows something, then doesn't know it, then knows it again, only to seemingly forget it the next second.  

I remember when Hailey was younger and I just didn't fully grasp this concept yet.  I would be dumbfounded by the things I could swear she knew just a second ago and she would act like she'd never seen/heard of it before.  Frustrating is an understatement!

So now that Hailey is 10, she herself understands that this is just a part of APD.  She gets frustrated when she can't remember something that she feels she should know.  I reckon it is like the expression "on the tip of one's tongue" where you just can't remember despite all your attempts to do so.  

So our best method of dealing with these moments is to say "oh, it must be dropped" and try to not worry about it, knowing that it will be found again.  With math, I can usually start to re-explain it and her brain will suddenly remember before I even get finished. When it is something she wants to say, well, we just have to wait until she remembers.

Luckily, eventually things make it into her long term memory where she can remember them and utilize them much easier.  We just have to be patient.

Coping with our Children's Distress

Hailey went to an audition today for a homeschooling play.  She did really well, but she felt that she didn't and so she started crying quietly in the audition room.  We went to the restroom so she could collect herself, but she ended up only feeling worse and didn't want to return to the room.  However, she desperately wants to be in the play and so I convinced her to go back and give it a chance.  Once in the room, she was asked if she wanted to come up on stage and read again, but she started to break down.  So, I quickly went up to the director to explain that she has Auditory Processing Disorder which is something like Dyslexia (I know there is so much more to it, but people tend to understand Dyslexia and not APD) and that she felt she didn't do well before and is now feeling rather scared, but wants to be in the play if at all possible.  Luckily, the director of this play is super understanding and told me that she thought Hailey did fine, that Hailey didn't need to read again, and that she would definitely receive a part in the play.  Whew!

So, I went back to Hailey who was doing everything in her power to not absolutely break down in hysterics while tears were quietly slipping from her eyes.  We walked out of the room and she let it all go, crumpling in my arms, repeating "I was so scared".  My wife and I managed to somehow get her to the car where she sobbed uncontrollably and informed us how we simply just do not understand.  After much reassurance and some really spicy peppermints to distract her (she gets comfort from extreme tastes), we managed to get home, convince her she did a good job, assure her that she would have a part in the play, and that it would get less scary with time.

Now she is out in the back yard jumping on the trampoline with her best friend while I am still trying to recover from the ordeal myself.  It is so difficult to see your child in so much distress.  I watch the other mothers sit in the back room chatting aimlessly while their children with no special needs just get up on a stage and read easily from a play they have never seen before.  They know their children will handle it.  With auditory processing disorder, a cold reading in front of a large group of strangers all the while trying to keep track of who is speaking when and trying to process not only what to say when but what it means and therefore how to express it appropriately is simply a nightmare.  Yet, this is the way it is done.

I am extremely proud of Hailey for even attempting such a difficult task.  Despite all the difficulties, she really didn't do all that bad.  Still, I can't help but feel how scary that whole situation really was for her.  I wish there would have been a different way of doing it all.

In the end, due to an understanding director, Hailey will be able to have the experience of acting in a play - an experience she really wants to have.  We will practice her lines and I'll be there to support her every step of the way.  Now I just need to find the calm down solution for me - the mommy who will handle all the emotions and keep everything running as smoothly as can possible be expected.


-originally written September 8, 2011 in my personal blog

Camp Update: Bravely Being Herself Despite Being Shunned by the "Popular Girls"

I posted a couple posts back about our daughter Hailey going to camp with auditory processing disorder.  She was extremely excited to go to camp and looked forward to making new friends and having fun with a group of girls her age.

Well, I had to pick her up early three days into camp.  She called me crying about the miserable time she was having and despite the counselors trying to tell me to just leave her there and she'd "probably" end up having fun "eventually", I drove over and got her.  What can I say, I'm an attachment parent and trust is a highly valued commodity in our home.  (Later Hailey told me how the other girls were telling her that no parents ever come to pick their kids up early.  Hailey told them, "My mom will."  I'm really, really glad that I did.)

So to make a longish story shortish, Brooke, the girl I had left Hailey talking to at camp that first day, had decided to befriend another girl at camp and left Hailey in the dust.  Once she found the other girl, she wouldn't even speak to Hailey anymore.  So Hailey did her best to try to make other friends.  Unfortunately, Hailey said she would be doing well talking with a girl and then the girl would go find someone else.

Typical to preteen girls, there was a "popular group" formed in the cabin and you guessed it, Hailey was left out.  According to Hailey, Brooke was the perceived leader of the group and she made rules about who could be in and who could not.  The first rule was that no girls with cell phones could be in the group. (The cabin of 20 girls had only 3 that brought cell phones.  Hailey had a cell phone.)

Some of the girls made fun at the way Hailey mispoke some words and when Hailey had to go to the bathroom, no one would be her buddy.  They weren't allowed to go alone.  When Hailey asked the counselor, she was told to just ask another girl and so eventually Hailey found a group going and just snuck in with them. (My smart girl was certainly resourceful.)

Apparently, Hailey also told the girls about homeschooling and having two moms and eating a gluten-free diet.    My first thought was how I might as well have put a "kick me" sign on her back, but these are the facts to her life and I am really proud that she isn't afraid to share them.

So with all that was happening socially to Hailey, one would venture to guess that she shriveled up like a victim.  Well, I am happy to say that she did not!  In fact, when it came time to sing karaoke, Hailey volunteered and got up in front of everyone to sing.  (Now that is what I call brave!)  Hailey kept trying to talk to girls and befriend them.  She did her best to enjoy the activities: horseback riding being her favorite.  But, eventually, it did wear on her.

When her counselors neglected to tell her about the bike tour she signed up for and she missed it, Hailey finally decided that she had enough.  She was the only one in her cabin that had paid the extra money and signed up for the tour and so, apparently, the counselors just left it off their radar.  Hailey loves to ride bikes and she was especially looking forward to this part of camp.  It was just too much disappointment.

After coming home and destressing for a bit, Hailey took out a paper plate that had words written all over it.  It was an activity where the girls were told to write something nice about each girl on the plate that was passed around for them.  Hailey had the expected "your pretty" and "I like your hair" type comments, but she also had two that really stuck out to me.  "I like how she isn't scared to be herself." and "youd stand for who you are".  Hailey and I discussed how special and wonderful these comments are.  I think it really made her feel good to realize that she may not have been allowed in the "popular group" and some girls may have made fun of her for her auditory processing and speech problems, but she had something remarkably better: she was brave, she was proud, and she was herself.  Not only that, but at least two other girls took notice and perhaps they will feel safe enough some day to be theirselves - no matter what the "popular girls" say.


-originally written July 22, 2011 in my personal blog

Our Brave Daughter: Auditory Processing Disorder Doesn't Stop Her From Jumping Into Social Situations

If you've been following my blog or are at all familiar with my family, you know that our daughter has Auditory Processing Disorder.  In simple terminology,"People with APD intermittently experience an inability to process verbal information. When people with APD have a processing failure, they do not process what is being said to them. There are also many other hidden implications, which are not always apparent even to the person with the disability. For example, because people with APD are used to guessing to fill in the processing gaps, they may not even be aware that they have misunderstood something." (Wikipedia)

So today I dropped our daughter Hailey off at summer camp.  It is a one week girls' overnight camp with a variety of activities including horse back riding and bike riding, which are the two things Hailey is most looking forward to, other than meeting new friends.

Once Hailey got settled into her cabin, one of her cabin mates came over to say hello.  Her name was Brooke and she was a darling red-headed 11 year old with a very cute asymmetrical hair cut.  Over in the corner, her mother was prompting her with hand signals and mouthing the words "Go ahead".  In turn, I turned Hailey around to be looking at Brooke; she had been facing the other way and hadn't realized Brooke was talking to her.  The two girls started making introductions and Brooke's mom quickly waved good bye while exiting the building.

Being the mom that I am, I stepped back a few feet from the girls and tried to inconspicuously watch the conversation that ensued.  Brooke was telling Hailey all about her knowledge of the camp as this was her third summer.  She was also expressing her hope that the theme this year will be Harry Potter as Brooke is a huge Harry Potter fan.  I could tell that Hailey was getting most of what Brooke was saying, but she wasn't catching all of it.  You see, Hailey has a "tell" when she is having difficulty processing what is being said; she repeats the last few words she heard.  This serves double duty as it makes it appear as if Hailey is understanding what is being said, while it slows down the speaker from moving too quickly onto the next sentence.

When I saw Hailey's "tell", my Momma's instincts made me want to jump in and rescue her.  I wanted to get into the conversation and control the flow so that I could ensure Hailey was processing all of it.  However, I am wise enough to know that this would do way more harm than good to Hailey.  Hailey is ten, and a ten year old girl does not want her mother jumping into her conversations.  I am sure this would not do well for her socially. So as hard as it was for me to watch her struggle, I knew I must let her work this on her own.

So like Brooke's mom before me, I took my cue to leave the girls to their own and quickly said my good-byes.  While I walked away, I realized just how immensely proud I am of our daughter.  Despite the difficulties her auditory processing disorder causes her, she bravely jumps right into social situations. She's learned coping techniques, and she doesn't let APD stop her from doing everything and anything she wants.


- originally written July 17, 2011 in my personal blog