Telling Relatives and Friends about our Child’s Special Needs: It is a Process for them Too

“Don’t lay him down or jostle him in any way, he’s just eaten,” I’d warn the unsuspecting loved one who just had to hold my baby boy at that moment.  Then, of course, came the dirty looks suggesting that she had held babies before and why was I being such a know-it-all.

 “Whoosh,” smelly, white liquid gushed from his mouth and covered her entire front side in sticky vomit. 

“Yep,” I’d think to myself, “that is why I said that,” as I went to retrieve my now sticky baby boy in need of a bath and to be refed.

So this was our introduction to letting family and friends know that our twin babies were not exactly like other babies – those ones that come out at 40 weeks gestation and not 32 weeks.  Among other things, the twins both had severe reflux which required special handling in their feeding routines – including keeping them still and upright for at least half an hour after eating.

As the years went by, my reputation as overprotective mother became even more pronounced.  I insisted my children did not have to be physical with relatives when they did not want to: “No Auntie he does not have to kiss you and she does not have to climb into your lap no matter how much you wish it to be so.”  Of course, I would try to explain why I felt this was important to their development, but like the adults in those Charlie Brown specials, I’m sure it just came off as “wa-wa-wawa”.

Well, you can just imagine the reception when I told the family that our daughter had a language delay and most likely Auditory Processing Disorder.  They simply didn’t believe it.  I was just being that overprotective mother who didn’t want to just let my children be.  “She would come around in her own time,” they thought, “all this effort on speech therapy and occupational therapy was a waste.”  Not to mention the fact that I used it as an excuse to not make her stay at large gatherings for long periods of time.

Still, I never let other people’s opinions change the way I reared my own children.  I knew I was being responsible and doing the best for them.  Heck, I researched everything and put every ounce of my heart and soul into being the best mother I could be for them.

Eventually the family came around.  They started to see that maybe I wasn’t this crazy, over-protective mother they had made me out to be.  Truthfully, I think having the “expert opinions” of others made them more open to the idea that maybe I was onto something true.  Here it wasn’t just me saying these things, but people with degrees in specialty areas were saying it too.  (Yes, you detect a note of sarcasm here because I hate that people think you need a degree to know something, but that’s another story.)

I don’t harbor any ill feelings towards the family members and friends that did not accept that my children had any special needs or who did not approve at first of my parenting style.  It is only human psychology to try adamantly to not accept something that is hard to accept; if I went through quasi-panic attacks coming to terms with my children’s needs, how could I expect them not to have their own problems in accepting it as well.  It is a process after all, and all those in our children’s lives have to go through their own process as well.

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.

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>

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.”}