The Problem With Raising a Special Needs Child

Guest post by Katy of Bird on the Street.

I’m sure that when some people hear that I’m raising a child with cerebral palsy, their minds immediately leap to the issues I may face. In large part, I am unaware of the specifics–Charlie is my only child and it is from time to time that my aching back reminds me that most three year olds don’t have to be carried or that I notice the ease that comes when I child can actually tell you what hurts when they are crying.

Sore backs and mind-reading aside, there are subtle changes that I cannot deny–they have become a part of who I am and I’m afraid they might be with me to stay. You see, there are problems with raising a special needs child, but they might not be what you think.

1. I find myself acutely aware of the power of my words and many are now off-limits. I’ve abandoned idiot, dumb, spastic, and moron in addition to the much-reviled “r-word.” Not because anyone is making me, but because I now know that words can wound even if I can’t see the scars.




2. I see people who used to be invisible. At moments it’s wonderful–I admire that the girl in wheelchair can use a straw–not as easy as it looks! At Mardi Gras I once threw some beads to a man in a wheelchair and was rewarded with a smile that I still keep with me. But it can also be heartbreaking–seeing a child and hoping that their parents are doing enough, that the doctors realize their potential, but not knowing for sure.
   Sometimes I congratulate people on their spectacularly advanced child only to discover that they are simply reaching milestones on time. You see, I stopped looking at the baby book a long time ago and have no idea what “normal” looks like any more. I hope my friends will forgive me.




3. I pretty much blow a gasket when I see someone abusing handicap parking spots. My husband always thinks I’m over-reacting, but can’t help myself. I also can’t help but notice when a store is set up in a way that would limit a wheelchair user from getting around. Even if we’re not using the wheelchair–it still bugs me.




4. I’m suspicious of black and white statements. When I hear that a child “will never be normal” I wonder what exactly normal is and who gets to decide. When I hear that someone “would have no quality of life” ask the same questions. And I will never forget that the child who was supposed to be “brain dead” could work a VCR, DVD player, and iPad at the age of three.




5. I forget that not every medical crisis is my business and have the rein myself in when I hear about one–restricting myself to saying a prayer rather than Googling the best hospital in the country for that particular issue and finding five blogs in keeping.




6. I react inappropriately to “bad” news. For instance, during one of my early ultrasounds, they were unable to detect one of the twins’ kidneys. The doctor started to explain that I shouldn’t worry, it might be the angle, blah, blah, blah and I stopped him and said, “oh, it’s fine.” He was a bit taken aback before I explained, “I deal in fatal and not-fatal–this isn’t fatal.” I’m pretty sure he still thought I was a weirdo. And not to worry, the kid totally has two kidneys.




7. And worst of all, sometimes I get so hung up on therapy schedules, doctor visits, prescription refills, the latest research, learning activities, etc. that I forget that these things are there to help to our quality of life and not to ruin it. I have to remind myself that as he is, my child is complete and not in need of “fixing.”

The essential “problem” is that I’ll never be who I was before. I’ll never be able to move blindly past some of the neglect, carelessness, or even callousness that I was previously unaware of. My innocence is gone–that’s the problem. And frankly, I think it’s OK–I like this version of myself better anyway.

More With Music

Here's a great resource! More with Music is a blog written by a board-certified music therapist. It's a site is for parents, teachers & music therapists who are searching for songs and ideas to help teach children of all ages.


You've got to stop by this blog! I've had so much fun looking around and listening to lots of different songs. Of the songs I've listened to so far, I particularly like Summer is Hot, Hot, Hot!

Positive Exposure ~ Redefining Beauty

By WINNIE HU
Published: June 21, 2011

RIDGEWOOD, N.J. — Students at Ridgewood High School were shown photos of young people with genetic disorders — muscular dystrophy, albinism, port-wine stains — and told not to look away.

The Pearls Project show at Ridgewood High School in New Jersey features a range of student work. At the top is a photo of Rebecca, 21, whose experiences living with a rare joint disease inspired a student's poem.

Then, those studying philosophy wrote essays about the meaning of beauty. A ninth-grade biology class went beyond textbook definitions of Turner and Marfan syndromes, communicating with real people to see how they lived with their symptoms. And a dance class created a piece about people with disabilities, in which dancers broke away one by one to perform in isolation.

“It was kind of shocking, because you felt yourself judging right away,” said Madison Konner, 18, a senior in the philosophy and dance classes. “You say, ‘There’s a boy with a funny face, ha ha.’ But you find out later he can’t help it.”

The unusual lessons are part of a new effort, called the Pearls Project, to promote tolerance and empathy in a school culture where being different can mean social exile. Ridgewood teachers developed it this year in partnership with Positive Exposure, a nonprofit group in New York City founded by Rick Guidotti, a fashion photographer.




Mr. Guidotti, who has photographed supermodels like Cindy Crawford and Claudia Schiffer, began snapping pictures of children with genetic disorders in 1997. A year later, Life magazine published his photo essay on albinism, titled “Redefining Beauty.” His work with these subjects has also been displayed in galleries, medical schools and children’s hospitals, as well as at Harvard University and at the Smithsonian Institution’s National Museum of Natural History.

For the Pearls Project, Mr. Guidotti photographed 11 young people, each with a different disability. He also arranged for them to blog about their experiences and answer questions from the Ridgewood students. The subjects are identified only by their first names — Byron, Ashley, Rebecca, et al. — and come from various states.

“Genetic conditions are depicted as images of sickness and sorrow — it’s always a kid up against the wall in a doctor’s office,” Mr. Guidotti said. “The idea was to bring these gorgeous kids into a community that didn’t know them and create a more inclusive society. It’s our responsibility to steady our gaze to see beauty, and not look away because we’re told not to stare.”



This fall, the project will expand to at least five more high schools across the country, Mr. Guidotti said, underwritten by $130,000 from a fund-raiser hosted last month by Ralph Rucci, a fashion designer, and Ian Falconer, author of the popular children’s series “Olivia.”

The principal of Ridgewood High, John A. Lorenz, says the project teaches important lessons about tolerance as schools face an increase in bullying and serve more special-education students than ever. The 1,700-student high school started a separate special-education program in 2008 for students who were once sent out of district; it now serves 18 people. There is also a club that works with children with genetic and behavioral disorders to put on musical theater shows.

“This is what real learning is about,” Mr. Lorenz said. “It’s relevant, it’s meaningful and it’s fun. Not one student said, ‘I wish I didn’t have to do this.’ ”

Teachers created assignments requiring students to get to know the Pearls subjects — read their blogs, watch their videos — and to put themselves in their places. The students were encouraged to ask questions, which their teachers passed along via e-mail.

Amanda Muccio, 15, a ninth grader in a biology class, said she asked Ashley, also 15, whether she was embarrassed to meet boys because she had muscular dystrophy and used a wheelchair. Ashley replied no, that if boys saw only the wheelchair, that was their problem. “I’m so happy for her that she can be so confident in herself,” Amanda said. “I envy that.”

In philosophy class, students used the Pearls photos to start a full-scale discourse on what Kant, Hume and Nietzsche, among others, thought of beauty, then wrote papers about what they had learned. “The challenge in a class like philosophy is not so much the material but getting them to carry it into their lives,” said Patrick Bernardo, the teacher. “This was a natural fit. Almost from the beginning, they saw the relevance.”

Creative-writing students who had signed up to write about their own feelings found themselves trying to write poetry about strangers. “It kind of took me awhile to get into it,” acknowledged Tony Boniello, a senior. “Maybe subconsciously I didn’t want to give writing about someone else a chance.”

Then Tony started reading the musings of Rebecca, 21, a college student with arthrogryposis multiplex congenita, a rare condition that can cause joints to be stiff and crooked. He fashioned a poem out of the sights that she found most beautiful: a sunset, the ocean, dolphins, a rainbow, a person who takes time to interact with someone with a disability.

“I think it’s important to get out of your comfort zone,” Tony said. “There’s only so much you can learn about yourself.”

A version of this article appeared in print on June 22, 2011, on page A18 of the New York Times, New York edition with the headline: Learning Empathy by Looking Beyond Disabilities.

Inward Stillness

"Let us, then, labor for an inward stillness--
an inward stillness and an upward healing;
that perfect silence where the lips and heart are still,
and we no longer entertain
our own imperfect thoughts and vain options,
but God alone speaks to us,
and we wait in singleness of heart,
that we may know His will,
and in the silence of our spirits,
that we may do His will and do that only."

~Henry Wadsworth Longfellow

Recover

I saw this song performed by Natasha Bedingfield a few nights ago. I had never heard it before and it touched me SO much! I had to share it with my kidz friends because I thought of every single one of you as I listened to it. It is so beautiful, enjoy!

Been torn apart,
Got so many scratches and scars,
Maybe the
y wont all go away,
But they'll fade,
Maybe time can mend us together.. again.
Its not what we've done but, how far we've come.

We will recover
The worst is over, now.
All those fires we've been walking through,
And still we survive, somehow.
We will recover
The worst is behind
And it hurts, but in time, I know that we will recover.

Got so much to lose,
Seems I've lost my power to choose, oh
What to love and when to let go,
That all changed,
Get bitten once and then your afraid
What a waste,
Look what we've done,
How far we've come..

We will recover,
The worst is over, now.
All those fires we've been walking through,
And still we survive, somehow.
We will recover,
The worst is behind,
And it hurts, but in time, I know that we will recover.
Everybody's gotta, a reason to cry,
And everybody fights but, not everyone survives
And everybody's searching, not everybody finds
And I'm still in recovery, and I'll make it alive?

We will recover,
The worst is over, now.
All those fires we've been walking through
And still we survive, somehow.

We will recover
The worst is behind, and it hurts but in time,
I know that we will recover,
The worst is over, now.
And all those fires we've been walking through,
And still we survive, somehow.
We will recover,
The worst is behind
And it hurts, but in time, I know that we will recover

What It Means to be Loved

For five months and eight days my wife and I had waited
Gettin' ready for our baby girl
But when he called the doctor said I need to see you
And could you come in soon
Then something died inside of me to sit with him and hear
The tests that said our baby may not live to be a year
Then turnin' to my wife and he said "what do you wanna do?"
And she said...

I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
And I wanna live every moment until that day comes
I wanna show her what it means to be loved

Print from Pam Garrison

So we spent each day, watchin' every minute
And prayin' for our baby girl
And I will not forget the way I felt that moment
When she came into this world
But they took her from the room just
as soon as she was born
And watchin' through a window I could see her holdin' on
When a voice inside me said...

I wanna give her the world
I wanna be her dad
I wanna hold her close for as long as I can
And I wanna live every moment until that day comes
I wanna show her what it means to be loved

Summer Fun for Everyone

If I were a good blogger, this post would be better organized and would have captions with fantastic descriptions. But you're stick with a mediocre blogger. This post is mostly selfish in nature, I gathered some ideas that I'd like to throw together before our 4th of July beach/camping getaway for Chloe and/or my nieces and nephews. So that's why this is a little random: 4th of July ideas with outdoor fun ideas, nighttime fun ideas, crafts, some things are for special needs kids and some are not... Yeah, it's pretty random, BUT the ideas themselves are cute. I hope you like them! (Images are linked to sources and/or tutorials.)

A Few Special Ways My Non-Verbal Child Communicates

In my process towards acceptance of having a child with special needs, one of the hardest hurdles was to accept that she may never speak, or at least not in the traditional way a mother usually expects her child to speak. Along my path toward acceptance, though, I've learned a thing or two about Chloe's ability to communicate in unique and special, sometimes even superior ways!

Chloe is obviously and deliriously happy -- so much so that it is contagious. Happiness radiates through her beautiful smile and pierces into the souls of those around her! Although Chloe cannot speak, she seems to whisper words of wisdom with that smile of hers.... Her smile seems to say, "Life is so simple! Life is so beautiful! Look around, take it all in, be grateful, have hope, and be happy!" True, Chloe is non-verbal but my oh my does she communicate with that beautiful smile!

Music is another way Chloe communicates. Her apraxic condition has allowed only a few words to seep out, and one word when asked what she wanted was, "Sing." Although she typically doesn't participate in making music, I still consider music one of our special forms of communication. We have songs that make us happy, we have songs that help us fall asleep, we have songs that bring comfort, we have songs that make us feel love. Music is a pretty big part of our mother-daughter relationship and I believe that's because music speaks when words fail.





One of my favorite forms of communication with my non-verbal daughter is simply being together. Sometimes it's the simplest moments when the TV isn't on, we aren't rushing to and from appointments in the car, we aren't doing stretches or exercises, we aren't gathered with lots of other people when we communicate in a very special way. When we are quite simply together, that is when I feel what she feels and am able to feel a sacred soul-to-soul communication. I would dare say that the simplicity of existing in silence together is one of the purest forms of communication.




Strong love between two people is always a special form of communication, yet one that is hard to put into words even when you have the ability to talk! We are told to speak our love and speak it often. But when someone you love with your entire being and you know that person loves you equally (and possibly even more deeply because they are more pure), that is a sweet form of communication built on a foundation of trust. Learning to trust that feeling rather than depending on hearing the words or being the recipient of grand gestures to show love is a hard language to fully comprehend, yet one that is powerfully undeniable and a privilege to learn.









Chloe's hugs are a glimpse into heaven. Because she has little to no control over her body, her hugs are not given on demand, they are rarely the same, they are few and far between. But they never disappoint and are always worth the wait. Chloe's hugs communicate gratitude, love, and a zillion other emotions that Webster has not been able to create a word for. I'm not trying to suggest that Chloe's hugging communication is at a higher level than that of Webster, but, actually... maybe that's exactly what I'm trying to suggest ;)







Chloe draws people in with another unique form of communication: a light in her being in a sparkle in her eyes. She shines. She radiates. I'm telling you, perfect strangers flock to her! There is something in that twinkle, something in her glowing presence that speaks to people. It speaks loud and clear to me, that's for sure!





Does your non-verbal child "speak" to you? Tell us how!

(By the way, I know my wording on this post is pathetic at best. It's late and I'm tired, but I wanted to share these even if I don't have time to edit. Thanks for your forgiveness!)