Accepting Our Child Has a Difference/Disability: It's A Process

"When our daughter was two, we noticed that not only did she not speak, but she didn’t seem to understand most of what 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." Suspecting Auditory Processing Disorder in Young Children

Realizing that your child has something "wrong" for lack of a better term is extremely frightening and completely overwhelming at first.  I remember being so stressed by it all that I actually would have quasi-panic attacks where I would feel my heart palpitating and feel short of breath.

Thoughts would race through my head: Will she ever be able to understand language?  What if she always tantrums? Will I have a 16 year old daughter who runs around frantically screaming with her hands held over her ears whenever she hears a loud noise?

Yes, it's true.  When our children show signs of a problem, we have no real idea how significant that problem is going to be in their lives.  And it is not just us who don't know!  We go to doctors and therapists and specialists of various sorts who can tell us what most likely is going on in their opinion, but none of them can give us guarantees of what the future holds.

So the hardest thing we as parents do is learn to be patient, keep hope alive, and honor and assist our children where they are at each and every day.  We cherish the little things they accomplish and work to help them meet one goal and then the next along their path.

Then over time we realize that our own anxieties are less.  We come to understand this disability for its gifts as well as its difficulties.  We embrace our child for who she is and cannot imagine nor wish her to be any different than whom she is.

Let's Have a Revolution! Schools Need to Radically Change

"Don't you know, they're talkin' bout a revolution

It sounds like a whisper"

---Tracy Chapman, "Talkin' Bout A Revolution"

A friend of mine wrote a post recently about dropping her daughter off at school and the feelings and thoughts that go through her mind every day.  Her hopes: "we drop them off in the morning and hope (beyond hope) that they survive the day, are happy, have friends and learn something along the way (in that order)." Her fears: "It wears our children out, the school yard has the power to break our children, and the teachers, they have the power to make or break our kids (not unlike my last blog - just hoping that the teacher will be the one to lift spirits and encourage our children to believe in themselves and their ability)." 1

This friend of mine has a child with auditory processing disorder, like my daughter, and so she has difficulty not only with academics, but also with socializing.  If you have trouble processing language and only hear and process 50-70% of what is being said, then of course socializing is harder.  The school yard can be a nightmare to navigate for children who hear and process 100% and let's face it, bullying occurs on school yards.  Children with disabilities, especially children with what are considered "hidden disabilities" (those that are not readily noticeable to peers), are more likely to be bullied than the typical child - which is high enough.

But I am not writing this post about bullying.  I am not even writing this post about learning disabilities.  This post is about the real need for our schools to radically change the way they function for ALL children.  I'm talkin' bout a revolution!

Children are more than their academic success.  Children are whole people with needs that are EMOTIONAL, PHYSICAL, SOCIAL, INTRAPERSONAL, INTELLECTUAL, and let's not forget the need for PERSONAL/CREATIVE EXPRESSION.  Schools focus only on intellectual. (They may touch on the others, but it isn't their objective.) Why is that?  Are we as a society saying the others aren't as important?  If a child learns to read but in the process loses all sense of self-esteem, what have we done?  Is that really a good idea?

Why do children go out onto a playground with hundreds of other children in a Lord of the Flies2

scenario: survive or die?  The teachers don't go out there with them to help them learn social skills.  The teachers don't monitor to make sure bullying is not occurring (one or two aids to supervise hundreds of children is just not enough). The teachers don't actively teach self-advocating skills, empathy for others, how to include everyone, and sharing and taking turns mostly stops being taught in kindergarten.(Sure teachers do their best to encourage these character building skills, but it's not their prime directive.)

Why aren't children encouraged to pursue their own interests?  Why are they not allowed to continue studying something they are interested in or take as much time as needed on things they find difficult?  Why are tests timed and if they do art, it must be completed in the 30 minutes allotted to art that day?

Why are children grouped according to age?  Are we saying all 9 year olds are the same?  Wouldn't it make sense to allow children to be taught in groups according to their learning style, aptitude for that particular skill, and even amount of interest?

Schools are not conducive to the development of the whole child.  Schools do not treat children like real people; children are being processed through a system that seems to think you can plug slot A into slot B and somehow get the wonderful, unique person that each child is meant to be.

And if you say they can develop their interests, learn all the emotional, social, and intrapersonal things in their free time, I ask you this:  How much free time does a child have when they spend 1 hour eating and getting ready for school, 7 hours in school, 2 hours doing homework, 1/2 hour eating dinner, 1/2 hour bathing and getting ready for bed,  and 10 hours sleeping each day?  That leaves 3 hours each day to do whatever chores their parents might want them to do, play with their friends, spend time with their family, and figure out what they want to pursue for their own interests and pursue them.  This doesn't even include the kids that are put in after school care programs or other extra-curricular activities like sports and clubs that have their own set of agendas.  Oh yeah, let's not forget down time!  All children need time to just relax and destress from their day.  When is that supposed to happen?

I am advocating for revolution!  I want a radical change in the way schools work with children.  Children are whole people with more needs and more value than simply forcing them through a systematic academic factory, hoping they'll survive.


1) Nancy Outten, "Auditory Processing Disorder: Holly's Story, coping with and learning about this disorder", March 29, 2012
2) Lord of the Flies is a novel by Nobel Prize winning author William Golding publish in 1954 about a group of British boys trying to govern themselves on a deserted island.


Update:  Check out this link to a TED talk by Sir Ken Robinson who expresses so amazingly well his ideas about a "learning revolution."  Sir Ken Robinson: Bring on the Learning Revolution!

Mini-Panic Attack Like Only A Mom With A Child with Special Needs Can Know

Today I went to the informational meeting for my daughter's ice skating show.  Everything was going along well when suddenly I heard that parents are not allowed in the locker rooms with their child.  Not only that but the children have to stay in their designated locker rooms at all times except when they are performing.

My heart started thumping as my mind raced over the problems with this situation: my daughter will be stuck in a room with 20-30 noisy kids not being able to process much of any speech due to the noise.  She won't necessarily know what she's supposed to be doing when the person in charge tells them to put on their skates and get ready to go.  She hates a lot of noise; she hates chaos; she hates to feel lost and most likely, she'll start to feel overwhelmed locked in a room full of  20-30 bored, anxious, loud, moving children.  She might begin to feel panicked. Performing in the show is enough anxiety to learn to deal with. We don't need to provide anymore.

My hand darted up like the child desperate to get called on.  "My child has a communication problem.  Can I stay in the locker room with her?"

"You'll have to volunteer to be a locker room attendant for all performances and be willing to help ALL the children."

To myself I thought, well of course I'll help all the children as much as possible.  But I cannot be solely in charge of all of them because my daughter will need me and that is my primary concern.

So I calmly stated that I would lovingly help all the children, but I would need someone else to help - I could not possibly do it alone due to my child's needs.  What do you know, a woman sitting beside me volunteered to be a locker room attendant with me for all three performances.  She has a child in the same group, and she said she works with senior citizens who have auditory difficulties (usually due to hearing loss) so she understands my concerns.

Phew!  Everything worked out just fine - panic attack over.  I love it when kind people provide.* Once again, asking worked.

*As an added bonus, the director of the program is going to coach my daughter's group performance number and she made a point to let me know she is aware of her needs and will be considerate of them. I love this ice skating program.

Helping Our Children With Special Needs Deal with Anxiety

Anxiety displacement is something I have been thinking about lately.  I’ve been researching what I can find about it with very little success.  There’s huge amounts about anger displacement, but what about the very real existence of people taking anxiety from one situation and displacing it onto anxiety about everything that ever happened or will happen.

The Problem:

You see, I’ve run into a pattern in my daughter’s life.  Whenever she has anxiety about something, it spills onto everything else.  If she has a dentist appointment, she’ll have an entire day of thinking about all the ills she has ever suffered in life and worries about them happening again.  She will get into that old stuck needle on the record place where no matter what anyone says or does, she is incapable of not worrying about everything.

I’ve read account after account of other parents discovering the same pattern with their child – particularly with children whom have special needs.  The intensity of the anxiety seems to be so overwhelming, that I believe the child displaces it onto familiar scenarios in an attempt to manage it.   Therefore, I think it is anxiety displacement.  Here is an example of how it goes:

What I’ve learned over the years is that my daughter is displacing the anxiety of going to the dentist onto everything else.  She doesn’t know how to handle the intensity of her fears and she goes to the old stand-bys that she has grown used to.  She has worried about her weight, her reading, misunderstanding, being bullied, having people not understand her, etc.  These are old pains and old worries that we have worked through repeatedly.  She knows the response she will get when she brings them up, and she hopes these responses will make her feel better – make the current fear go away.  The only problem is they can’t.  Hearing me remind her how well she reads now doesn’t make her fear of going to the dentist go away.  So she moves on to the next old fear or pain with the same result.  As you can imagine, this is exhausting and futile for both her and me. 

My Solution:

So what I have finally learned is to not go down that path with her.  I simply tell her that she is bringing up old worries and that they are not her problem right now.  If I know what she is most likely having anxiety about, I talk to her about that and that only. I tell her that we can talk about those old worries later if she still wants to, but not now.  For instance, when she had a dentist appointment, I told her we could talk about her worries about going to the dentist but those old worries would have to wait until after the dentist appointment, because they were probably not real worries today – just triggered from her current worry about the dentist.  (Of course after the dentist appointment was over, she felt fine and no longer wished to talk about any worries.)

We also focus on feeling better right now.  We have talked extensively about how all people’s brains don’t work well when we are in the middle of intense emotions and how we need to calm our mind before it will work well.  Therefore, we focus on doing things that calm our minds.  For my daughter, this is chewing gum, smelling lavender, being squeezed, and doing relaxing activities like singing, dancing, or watching a fun show.

Prevention Works Best:

Furthermore, I’ve found that if I can prepare for the anxiety inducing event ahead of time, life goes more smoothly for all of us.  What this means is as mother, I know an event like a dentist appointment might provoke anxiety, so I plan on doing non-stressful fun events and calming things that day.  I don’t plan other things for that day for her or myself, and I make sure I get enough rest and sustenance to manage the emotional day I have ahead of me.  As my daughter gets older, she learns more how to do these calming things for herself and how to plan her life herself to allow for such things.  That is our goal: to help her learn how to calm herself, deal with anxiety, and prepare for stressful events whenever possible.