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!