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>