Tuesday, August 28, 2012

The Swim Coach and the Silent Waltz

"Hello, er yes," I said rather nervously over the telephone, "I am looking for some swimming lessons for my son this summer."

"Okayyyy," said Beth, our local swim coach, who owns a pool and for many years has taught all of the neighborhood children how to swim.

I closed my eyes and waited for the next inevitable question.

"How old is your son?"

"Well, um, er..." I replied uncomfortably.

How do I do this? I wondered to myself. How do I explain why it took so long for me to consider swimming lessons for Nicholas? How do I explain about Nicholas? How do I tell her about his diagnosis? But more importantly, will she be willing to teach him how to swim?

"He, um, has very low muscle tone and struggles with issues related to coordination." My pathetic attempt to try to educate her on some of Nick's challenges.

"Okayyyy, how old is he?" she asks again patiently.

"He's ten," I replied and felt my cheeks start to redden.

"No problem, she said, We will probably need to place him in a class with younger children."

Oh no, I thought to myself, she does not understand. Inside my head, I pictured a school of flopping, screaming children splashing her pool into a seething whirlpool of doom and destruction. I could see the slow moving Nicholas overcome by a monstrous wave of blackened pool water.

"Perhaps this isn't going to work," I answered, frustrated with my inability to explain what Nicholas needed.

"I have taught several children diagnosed with special needs to swim," she replied trying to assure me she had done this before.

I started to breathe a little easier.

How many children will be in the class?" I asked.

"About 6 or 7, but I would need to take a look at him in the water first." she answered.

More images of a floundering Nicholas gulping mouthfuls of chlorinated water.

"I don't know, I said, I am not sure this would be a suitable class for Nicholas."

Again my fear and inability to communicate.

"Once I see him in the water, I will have a better idea of what he needs." she reassured.

"Oh," I said feeling a little better but still picturing Nicholas and Beth floating out of the pool on a giant kid-made tsunami.

"Why don't you just bring him by on Monday," she said. I could sense she was getting frustrated with me.

I hung up the phone and questioned the value of my degree in communications.

As the days passed, Nicholas looked forward to his first swimming lesson. We all tried to prepare him for the arrival of the big day.

"Nicholas, you're going to love swimming in the pool, it's so much fun," Weston said anxious to reassure his younger brother.

"I am?" Nicholas asked.

"You are!" Weston answered.

"Beth is soooo nice!" I told him enthusiastically.

"She is?" Nicholas asked.

"She is!" I answered.

Monday finally arrived and Nicholas awoke. He donned an old pair of Weston's "surfer dude" swim trunks, anxious to begin his new adventure.

We arrived at Beth's pool.

A mass of tiny, wet children was exiting the churning pool, laughing and shivering. What was I thinking? I thought to myself as they clamored around me and Nicholas looking for their towels. It wasn't long before each chilly child found their mother and headed home. The pool and surrounding area became quiet, the water stilled. A tanned, gray haired woman walked up to Nicholas and extended her hand.

"Are you ready Nicholas?" she asked.

"I am!" he replied enthusiastically.

She held his hand and led him to the edge of the pool.

They did not speak.

Within minutes, Beth had the sensory-sensitive Nicholas in the pool and smiling. I sat stunned on the side of the pool. I watched as these two strangers silently connected. They glided through the water in an effortless motion of trust and mutual respect.

Beth pulled Nicholas slowly around the pool. He let her gently guide his body.

"Ok, now try to put your legs behind you," she instructed softly, and the compliant Nicholas allowed his body to float. They swirled silently together through the water from one side of the pool to the other, softly, gently, quietly. Nicholas bonded easily with this patient woman. There were no dangerous waves or whirlpools. There was no fear or anxiousness, no difficulties communicating; submerged in the clear, tranquil water of the pool, they were dancing. As I watched their graceful movements together, I could almost hear the music.

This calm, silent scene was a sharp contrast to the loud, nervous noise inside my head. My needless worry seemed silly to me now and I wondered if perhaps the word "disabled" was a more accurate description of me. I was the one who was awkward and afraid. I was the one who had trouble trusting.

I was the one who couldn't dance.

It is my son, not me, who hears this inner music, a song that connects him silently and fluidly to others in this world who also vibrate to that beautiful sound.

As I watched my son dance to this silent music, I realized I have a lot to learn.

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Lisa Peters writes about family life at her blog www.onalifelessperfect.blogspot.com. Please feel free to come visit and share our adventures. Thank you for reading.

Fires of Anxiety

Fires of Anxiety

My seven-year-old,
tired, says to me,
from the backseat of our rental car
two days into a family vacation,
Everybody hates me.

Our first visit to the New Jersey shoreline
to a distant family reunion-
cousins many times removed,
twelve kids deep
into years of tradition,
games, and theme nights.

Newness sends my son reeling,
he crashes into the floor,
obsesses over schedules,
yearns for routine.

I hate how these feelings rise,
masked in unworthiness-
ready to fight
a big bad world
that never sees him as good enough.

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Jennie Linthorst, MA, CAPF is a therapeutic writing coach and the founder of LifeSPEAKS Poetry Therapy. She works privately with men and women helping them tell their stories and heal, through reading and writing poetry and personal essays. Jennie coaches clients all across the country and around the world via phone, Skype, e-mail, in addition to in person meetings. She is the author of a book of poems, Autism Disrupted: A Mother's Journey of Hope. Her family’s story is captured in the award-winning documentary film, “Autistic-Like: Graham’s Story”.

Sunday, August 26, 2012

Separate yourself from your story

Recently, my wife and I allowed a filmmaker to come into our house to document our day-in-the-lives. We are parents of three children, two with cerebral palsy.

The idea of being captured on film as “an imperfect parent and caregiver” was very nerve-wracking.

I work very hard at my role, but every day brings new challenges and insights. I was afraid that my flaws would be portrayed in the film.

The reason I agreed to the film was because I was tired of telling the story of how I became a full-time caregiver. I didn’t want that to be the only definition of who I am to the outside world.

Over the past several years, I’ve worked very hard to try to separate my identity from my “situation” of being a parent of two special needs children.

That’s a challenge when you are a parent who provides 24-hour-seven-days-a-week support.

While creating a small documentary film may not suit every family who cares for love ones in similar capacities, I highly recommend dedicating time to separate yourself from your story – how you arrived to your care-giving role.

For example, while I share my perspective through writing, I’m want people to know I’m much more parent/caregiver.

In addition to having these roles, I’m also a passionate communications professional with a wide range of marketing and business experience.

I take pride in using those skills to be a part of a larger society. When free-time allows, I’m avid hiker (with and without my children), a poet, a birder, and most recently, a Great Lakes surfer (the latter goes against the ideal of being a 24-hour caregiver).

But when the story of how my child became disabled creates long-lasting impressions - or life-long definitions of me outside of my own work – the film idea seemed like a good way to create a final separation from that view.

I was surprised that the filmmaker captured the “normalness” of our family in a way that helped me let go of that story that once was the only definition of me: a parent of special needs children.

Perhaps what the film captured most was something much more unexpected: that my children, my family and I are way more like other people and families than we are different.

The House of Gort from Steve Tatzmann on Vimeo.
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Tim Gort is the author of The Gort Family Blog, at thegortfamily.blogspot.com. Reach him by email at timgort@timgort.com or through his website, timgort.com.

Saturday, August 25, 2012

World Suicide Prevention Day, September 10, 2012

September 10, 2012 is World Suicide Prevention Day. It's a day that I'll probably blog about and I'm sure to think about quietly as I watch my 13 year old son go about his day. I've been thinking a lot about suicide because just this week a public figure, director Tony Scott, jumped off of a bridge. 
Through the entire time of Gage’s bout with suicidal thoughts and actions we weren't sure which way to go with his treatment. That's the thing about mental illness, there isn't a sure way treatment. 
There is a very distinct difference between mental health treatment and kidney transplant. For both of the kids failing kidneys we always knew they'd need dialysis or a transplant to survive. There was a goal. A finish line and that was kidney function or fake kidney function (dialysis). 
Treatment for debilitating depression is obviously different for each person and for a child who has had a kidney transplant it is even more complicated. Just about nearly everyone wanted to pass his treatment on to someone else. Finally, after we admitted him to a psych hospital, we found a doctor who agreed to treat him. Treating him involved working closely with a transplant care team and pharmacologist. It involved the doctor knowing or researching certain drugs to make sure they wouldn't interfere with anti-rejection meds and/or be toxic to the one healthy kidney we longed for and was successfully working in my son. 
When I think about World Suicide Prevention Day I think about all of the people who are struggling with suicidal tendencies, I think about the loved ones who've watched their people die to suicide. I think about doctors that aren't afraid to treat patients - especially those complicated, tough cases. I think about sisters and brothers who endure years living in difficult circumstances with siblings who are suffering from mental illness. I think about parents. 
I think about us. I think about the day we drove away from the hospital and entrusted them with our son because we couldn't keep him safe. I would do anything not to feel that way again and talking* about it, writing about it and remembering it gives me hope that if we can deal with it better next time. 
We're always at risk for a next time. 

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 Julia Roberts is a writer, speaker and strategist. She can be found at TheOtherJuliaRoberts.com *My son knows and supports writing about his issues publicly and I will until he has an issue with it. We talk about it a lot - about the time he was so sad he wanted to die. It never leaves any of us, least of all him. 

Thursday, August 23, 2012

Keeping our Children Safe

According to the NIH, 

Nearly 44% of sexual assault victims in the United States are younger than 18 years.  
This is my biggest worry for my daughter.  She is 11 years old and going into 5th grade.  She is very trusting and more than anything, wants to have friends.  We have talked to her numerous times about keeping herself safe, who she can trust, how to stay with a friend.  Things still happen.

What can we do to keep our children safe?  We send them out in the world prepared, but we still have to worry about bullies.

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Jennifer Giroux is a wife and mom to 3 children, who couldn't be more different: one in special education, one in gifted education, and one who has yet to reveal his education.  She blogs about the things your mother told you to avoid discussing, specifically politics, religion, and how it relates to her family's journey in the world of special education.  You can read more at www.afineconundrum.blogspot.com

Monday, August 20, 2012

10 Things You Should Never Say to a Special Needs Parent

Many of us special needs parents receive stares, comments, and unsympathetic annoyance from onlookers - strangers who have no basis from which to judge our situation.  Sure, some of them have kids or may even know someone who has a child with special needs, but unless you walk in our shoes daily, you have little right to judge my child.

At least, that's what I tell myself as I turn my back, attempt to soothe a screaming 3.5-year old, and walk away, knowing that the likelihood of ever encountering that same inconsiderate individual again is probably slim-to-none.

What happens when the comments come not from someone who doesn't care and is separate from your situation and devoid of knowledge of your day-to-day life?  What happens when the comments come from your own family or close friends?

Unfortunately we all get them, so I've put together a list of the things that you should never say to a special needs parent, no matter how well-meaning you are:

1.  "I don't know how you do it!"  I realize that most people intend on this being a compliment, but I think that most people also don't think about what they're saying when they say it.  What alternative do I have?  Of course I do all of this...I have to do it.  You would too if your child had special needs.  It's just life.  Sometimes life hands you everything you've ever wished for.  Other times, you get put on a detour.  Sometimes, you wind up hundreds of miles away from your destination, but life goes on, and so must we.  So, I respond that I'm not a super hero or anything like that; I'm just a mom, and I'm doing what I think - what I hope - every other mom would do with a child with special needs.  Maybe we all do it in a different way, but we all do what we must for our children and our families.  And you could, too, if you were in my position.

2.  "He doesn't look autistic."  What does autistic "look" like, exactly?  To my knowledge, kids on the spectrum look like everyone else.  They have good days and bad days.  Many of our kids have invisible disabilities.  If you were to look at a picture of my boy, you wouldn't see a feature that screams autism.  You'd see a ridiculously adorable little boy (and yes, I'm shamelessly biased).  I'd urge you not to judge kids based on appearance alone.

3.  "The only way you can be sure you won't have another child with a disability is to not have any more kids."  Okay, this statement has never been said to me by a physician of ours, but I have had several people volunteer this to me in passing.  First, I should say that I find it wildly inappropriate when people ask you about when you will have children or if you'll have more children, special needs family or not.  It's an intensely personal decision and there are often factors that go into it that you don't want to share with the world.  I'll volunteer to other special needs parents who have wanted to hear opinions on it, but usually that's it.  People often want to know if we'd consider having more kids, and they often have heated ideas about it.  This is one of the responses I get.  I understand that it's true, but do you really need to tell a special needs parent that it might be best if they considered themselves to hit a reproductive dead-end?  I know people have morbid curiosities about whether or not we'll have more children, but I tend to feel like this falls into the category of "Nobody's Business".

4.  "It looks like he doesn't know how to get along with other children.  Maybe you should put him in preschool or a play class?"  I get this exclusively from people who don't know that Jack's autistic.  They'll see how he is around other children and suggest that perhaps I haven't exposed him enough to other children (not just typical ones, any children) and that he might need a lesson in sharing and caring.  After all, I obviously haven't tried to teach him social skills.  My son had been in Gymboree or some play group setting continuously since he was 6 months old until he was nearly 3 years old.  At that point, we switched to a special needs play group because the other kids were leaving him in the dust and he was going to be stuck in a class with kids significantly younger than he.  If that was the answer to his problems, he wouldn't be autistic, because he's been doing this for over 3 1/2 years.  Now, we did at one point - before he was diagnosed - try to enroll him in preschool, but the preschool told us that their program wasn't the right place for my boy.  He's in preschool special education now.  However, it hasn't helped his social skills so far, so thank you for the advice and for making me feel like I haven't done enough for my kid.

5.  "Is he on any medication?"  I actually had someone ask me that at a birthday party when they saw my son melt down and I had to explain that he's autistic.  This again falls into the category of "Nobody's Business".  Really, unless you are a healthcare professional or someone else who absolutely needs to know (or another special needs parent who is curious as to what we do for our boy), I'm not going to share with you what, if anything, my child is taking.  That's between me and his medical team - not a rude stranger who thinks that my child's behavior warrants medication.

6.  The "R" Word.  I've talked about this before, but just don't do it.  My son was called this once, and nothing has ever hurt me so deeply than this callous remark by an ignorant person.  Nothing, and I mean nothing will make me take on the appearance of a deranged banshee faster than calling my kid this.  Seriously.  This is not the term that is used these days and the only way in which it is used is in a derogatory manner.  If I hear you say it, you'll likely get a verbal punch in the head from me.

7.  "That is the funniest thing I've ever seen."  When my kid is wigging out, laughing at him, as tempting as it may be to you, makes me feel awful.  When my son is having a meltdown, he is stressed.  He can't let people know what's wrong.  He is vulnerable and he isn't in control of his body.  His body is in fight-or-flight mode.  It's not funny; it's a snapshot of a very upset, scared little boy.  My kid can't help it or control it when he has a meltdown, and hearing you laugh is incredibly disrespectful to my little boy.

8.  "Why can't he have a cookie?  Just one won't hurt him!"  When we're out and about, people try to push food on my kid like he were a starving child.  However, giving him a piece of food - like a cookie - that he doesn't eat will at best cause him to meltdown and at worst cause him to choke or throw up.  What I wish is when I say "No, thank you" to your offers of treats, people would say "Okay!" and drop it.  I really don't want to have to go into the specifics of my son's sensory issues, oral-motor weakness, and feeding problems.  I don't want to describe his feeding disorder or what dysphagia means.  It's exhausting to have to explain it over and over again and - quite honestly - it's no one's business.

9.  Your kid's not potty trained, yet?  My kid was potty trained before he was two.  Maybe you should ditch the diapers and force your kid to sit on the potty for hours a day, because it worked for me!  Good for you that your kid was potty trained so early.  Mine is 3.5 and we're not even really starting yet.  It's fairly low on our radar.  Potty training requires a certain level of communicative ability that my child lacks and, realistically, may lack for a while longer.  He also lacks a sense of when he has and has not gone to the bathroom, which makes awareness for not only toileting needs but - more fundamentally-  diapering needs difficult to achieve.  Making me feel bad about it won't make it happen any faster.  Believe me, I wish my kid was potty trained, but I'm not going to stress him out about something that he's developmentally not ready to do.  

And finally - 

10.  "Your son is autistic?  I'm so sorry."  I get that people mean well with this, but I'm not sorry that I have an autistic son.  My life took a detour and they sympathize with that.  However, if having my child - my angel - means that I have an autistic child, I'll gladly take him any day.  Why?  Because he's perfect in my eyes.  He has challenges.  He struggles.  I would take those struggles from him in a heartbeat, but he is who he is - disabilities and all - and I would have a different child if that wasn't a fact of his life.  However, don't pity him.  Don't pity me.  My life isn't awful.  It's not worthy of pity.  This is our reality.  Don't give pity; give understanding.  I don't want a different child; I want my child and I am so grateful that he's all mine.

As I have presented the world with a laundry list of what not to say to a special needs parent, you might be wondering what should be said.  People feel the need, in so many cases, to say something.  Sometimes, especially when it comes to encountering a parent who is bearing her soul about her child's disabilities, the best thing to do is simply listen.

To the people who are not special needs parents, you may be wondering what, if anything, you can say.  For those people who feel the need to say something, ask about the child's condition.  Ask their parent to help you learn about their condition so that you can help educate others and so that you can better understand that child's needs.  Extend your friendship.  Suggest that your kids play with their special needs child.  

Be a listening ear and an empathetic friend, because so often, that's what we need most of all - someone who will just listen.

Please share your thoughts and add to this list.  What other comments should someone never say to a special needs parent?  Conversely, what would be the right thing to say?

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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3-year old little boy on the autism spectrum.  After her only child was diagnosed at 24-months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.

When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy.  To follow more of her ramblings, like her on Facebook!

Sunday, August 19, 2012

8 Days.....


In 8 days, I will be bringing my 3 children down the street for their first day of school.  Big Brother will walk in and join his friends in 2nd grade, and the twins will be heading into kindergarten.

I never thought I'd be here.  For the longest time, the thought of all 3 kids attending the same school was almost a pipe-dream.  But with hard work by everyone, we are there.  Ballerina will be entering a general education classroom for the first time ever (after being in special education programs since she was 27 months old) and Music Man will be in a special education classroom with mainstreaming opportunities.

This next week is going to be all about preparation.  I have to be prepared to introduce a whole new routine (including the lack of buses as the school is just down the street from our home) and a whole new set of rules.  I will be meeting with their teachers on Thursday evening at Back-To-School-Night (for kindergarten, BTSN is before school starts to prepare the parents) and then Open House will be on Friday afternoon so they will have a chance to meet their teachers face-to-face.  We already know who one of Music Man's classmates will be and we have a play-date scheduled with that child for Tuesday afternoon (they have never met -- I know this child through Ballerina's activities) so he will have at least one familiar face in the classroom (other than the teacher and paraeducator) on the first day of school.  Overall, I think he's going to do fine......once he gets there and learns what the expectations are, we'll be good to go.

Ballerina, on the other hand, I'm still trying to figure out what to do.  I need to let her teacher know what to expect and how to handle situations as they arise.  I don't know enough about her teacher (yet) to know how much experience she has working with children on the spectrum or with other special needs.  I found a letter another parent wrote to their child's kindergarten teacher online, and I plan to tailor that letter to suit Ballerina and our current situation.  And, since I will be picking her up from school every day, I hope to be able to have regular conversations with the teacher to see how she is handling the transition and what (if anything) we need to change.

And then, again hopefully, in a month or so I will be able to start volunteering in the classroom and seeing what's going on for myself.  If my presence there is going to cause problems, I won't do it.  But I volunteer in Big Brother's classroom and would really like to do the same thing here.  It gives me, as a parent, a wonderful insight into what happens while my children are at school.

Sending Big Brother off to kindergarten was supposed to be difficult, but it wasn't.  He was ready and so was I.  Sending the twins to kindergarten is proving to be VERY hard.  I don't know if it's because they are my "babies" or if it's because of the Autism, but I don't have the same confidence that they are ready.  And I don't have the same confidence that I'm ready.

I have 8 days to fix it all!

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Ilene is a happily married Stay-At-Home-Mom living in the Washington, DC area raising her 3 rambunctious kids, 2 of whom are on the spectrum.  Parenting twins is VERY different from parenting a singleton (not harder, just different) and that fact isn't made any less by adding Autism to the mix.  But that's just the way it is sometimes.

Come and read her stories at My Family's Experience With Autism.

Saturday, August 18, 2012


Last summer my son started "working" (I pay her to have him help her, can we still call that "work?") for a woman with many, many years experience teaching special ed. She'd retired from teaching and had opened a preschool in her home in our neighborhood. Long story short, soon as I caught wind of her I sunk my hooks in her and made her life miserable until she agreed to "hire" Rojo. Last summer was bumpy - lots of calls from the teacher to me and lots of me hoping, praying and promising things would get better.

"Instead of doing this next year," she said at our end-of-summer conference, "I think he should go to camp. He needs camp. He needs to gain some independence - try new things, become less rigid."

"Can't he do both?" I implored?

"We'll see," she said.

Starting in mid-March I again put the screws to her, and she relented. We agreed on an abbreviated day so he'd go home before he had historically begun to have problems. I adjusted his meds, returned to a kneeling position and crossed both fingers for good luck.

The phone never rang. On the few occasions she drove by or we bumped into each other in the neighborhood, she always smiled and said, "He's doing GREAT! What growth from last year!"

I followed her (and other's) suggestion, and signed him up way back in January for a camp that is tailor-made for kids with special needs. "It'll be good for him," everyone assured me, and I believed them.

We psyched him up for a full year, talked it up and tried to prepare him for all the food he would have to try, the different kids with different issues he'd be camping with, the fun counselors, taking a shower and sleeping in places he wasn't used to, on and on and on we went, verging on overboard.

Pulled into camp and his eyes got big as he saw a few wheel chairs being taken from the backs of cars. Lots of kids with behaviors he found perplexing. Kids that got into his personal space, said and did things he didn't know what to do with. In short - he wasn't in Kansas anymore.

In the bubble we've had him under for sixteen years, he's always been the most disabled in the bunch. He's lived, with a lot of help, in a world of mostly neuro-typicals. He's never had to be the one to stretch his compassion, stretch his tolerance, stretch his patience.

For a week he had to.

When we went up on the last night for the Friends and Family BBQ he was visibly miserable. He hadn't eaten much. He hadn't showered much. He hadn't pooped much. And he hadn't slept much. Apparently there were two boys in his cabin that were really loud and at night they "screamed."

Mama Bear almost packed him up and took him home right that minute - how dare ANYONE disturb my son's rest!

We didn't, however, we left, and in the morning I called the preschool teacher and requested a pep talk. She gave me one. She talked about how important it is to be pushed out of our comfort zone, how he needs to gain independence if he's ever going to live away from home, and let's face it, at some point he'll have to. She talked about how good it is for him to have the shoe on the other foot sometimes. She talked, and I listened, and when I had to leave shortly after that to go pick him up and bring him home, I was restored.

"I didn't like camp," he said right away, but within two hours of being home when he started talking to people on the phone that were welcoming him home, he said things like, "Great!" and "I loved it."

I don't know yet if we'll have him do camp again next year, but whether we do or whether we don't, we will continue to broaden his horizons, continue to push wide his self-made boundaries that we are guilty of solidly reinforcing. Whether or not he goes to camp, he's going places.

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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. 

What keeps me going every day...

...along with my Family...

In the morning... 
After two hours of work...
After four hours in my office... 

...to be honest... I ROAR just: "COFFEE!"

When I came home...

Yeah, I do love to laugh!

(All photos were taken from different sites on Facebook..)

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Petra is a Writer, Mum of Two, Wife to One, Full Time Employed Woman... Warrior for a better Future for her child with Autism and for the one without. 
She blogs at http://foraoisdarach.blogspot.com

Thursday, August 16, 2012


Among the jagged parts of this day in this parenting-with-differences life were: working around varied and adamant refusal to participate in summer school speech therapy, nearly constant physical support for an almost 60lb kid, the murky and frustrating gaps not covered by the alternative communication we rely on,  awkward logistics of changing a 9 year old’s diaper, the irritating and relentless “science experiments” such as pouring a cup of water onto the iPad to see what would happen, flashes of anxiety about the impending school year – new teachers, new friends, new curriculum, concerns over unusual expressions and sounds and a leaky blocked tear duct, the usual stares and comments from others in public, the responsibility to respond to all these in constructive and positive ways… all of this and more served as the raised, serrated parts of the day.

Many days I go bumpily careening perpendicular to each barbed edge, hitting each head on, resisting, digging deeper, feeling deeper all of the things that in brighter times are called inconveniences and in darker times are called hardships.  Below and between these toothy things, sometimes totally overshadowed in any given 24 hour unit, are the grooves.  The thin, smooth furrows between the teeth that when recognized, propel me on with their own kinetic power. These parts are lower, finer and less obvious than the rest.  They are easy to miss.

While the high walled inconveniences are very present every day, today I rode in the grooves.  After the less than stellar speech therapy session, Addie’s respite caregiver arrived.  They have a genuine mutual respect and fondness that makes it effortless to leave them together once a week.  During this precious time today, my 13 year old and I got to cross some back to school shopping off the list.  Cate picked out a few things and tried them on.  She fell deeper in love with them in mirror the fitting room.  While I said little – if I were to agree too much about how lovely her choices were, she may get a bit suspicious and rethink her selections, turning to the things I'd hoped she'd pass over in the first place - I piled a the few she loved into the “yes” heap.  She threw herself at me as though I had just changed her life forever.  All through lunch she continued to pepper her chatter with subtle and less subtle expressions of a grateful heart.  This groove was greased with her truly gracious smiles just for me and with the gladness of knowing she is one who is so full of thanks she easily allows it to overflow.

When we returned from shopping, Cate scooted off with friends and Addie’s respite caregiver packed it in to head to a preseason NFL game (Go Packers!).  Addie and I lingered on the porch this cool and cloudy day.  She was watching a musical on her iPad – Godspell, actually.   We are not overtly religious people.  She’s just been wild about the movie since seeing her sister enjoy it one Easter, laughs that rare hearty laugh and skips from chapter to chapter for her favorite songs.  Many times she’d prefer to be alone and just hunker over her video in complete control.  But today she signed for me to "sit here" close to her.  She skipped to a song the whole family knows by heart as a result of how many times she watches this movie.  She looked up at me with her very specific “I want you to do something and now I'm gonna tell you what” look and opened and closed her mouth a few times.  When I didn’t respond immediately to that, she pointed her tiny tongue and soundlessly mouthed “ la la la.”  Ah, I’m to sing along.  And so I did.  She smiled and bobbed head side to side all the while, as though my singing voice might be an acceptable one.  It isn’t.  But you wouldn’t have known that looking at her.  Which made me sing louder and with exaggerated animation – just the way she likes it.  From there we moved to watching video slide shows I have made over the years for Addie and for her older sister.  I commented on some of the photos, she signed a bit, each sharing some observations.  At one point she climbed up into my lap and laid her head against me – something she usually only reserves for her pops.  In this groove I felt her let go to me, not resist, not require my support, just let go and cease worrying about agendas – neither mine nor hers.  It dawned on me that I didn’t know who was following whose lead.  We just were.  Slipping and sliding through that smooth, narrow-but-deep, easy groove together.

A brief return to craggy pitching when later Addie adamantly hollered at me with her communication device, EAT, EAT, EAT and I realize I have nothing planned for dinner.  I find Cate has returned with a backyard full of kids.  I decide to use that to my advantage while I find something for them to eat – equipped to do so solely due to the trailing propulsion from the grooves I’d ridden in already a few times today.  A small gasket could easily have blown otherwise.

As I settled the girls to some dinner they’d eat without complaint, my husband arrived home from work gearing up for his training run. He is doing his 5th marathon in October, so he’s been pretty diligent about getting his miles in.  On his shorter runs, sometimes the whole family will go.  I’ll run along, he’ll push Addie in the mega-jogging stroller and Cate will ride her bike.  But Cate still had a yard full of friends and now Addie was entrenched in their merrymaking.  So we asked Cate to mind her sister while we did a quick run together.  Just the 2 of us – a running date. Never happened before. 

I am not a fast runner, nor am I a distance hound.  Michael pulled his pace back for me, which I know is not easy.  We chatted about nothing in particular.  He had a bit more distance to cover than I was planning to run, so I kept telling him to go on ahead or turn off for an extra loop.  Other than 2 hills I was not gonna do (slight injury yesterday as I failed to clear a bench I was trying to leap over chasing Addie at the science museum), he kept alongside me.  About his insistence to stay with me, he said we never get to have any time alone together, so we should stretch it while we have it.  He referred to our general lack of time alone, but also to the fact that due to parasomnias and apnea, Addie actually sleeps safer and more consistently with the solid warm weight of another person next to her.  So yes – she still sleeps with us most nights.  While we don’t sleep all the way through, we’re all better off when we don’t have to keep getting up to reset her from the vigorous rocking she does when she’s alone at night.  When we say we are never alone, we do mean pretty close to never.

And so we ran side by side, sometimes talking, sometimes just listening to our foot strike.  This groove daubed with rhythm and fresh air, with natural and complete conversations with my husband, with the lack of requests – verbal and otherwise – from dependents.

This day I coasted in the grooves.  I hope momentum carries me partway through tomorrow.  For I know I will skitter across the rough edges again before long.  But at least it will be with the faith that I can drop down again into a smooth spot at any time.

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Wednesday, August 15, 2012

Aloha brownies

“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.”
— Paul Collins

At the end of the school year, last Spring, Danny's teacher announced they would be having Hawaii week--several days filled with tropical snacks and activities.    I was thrilled at the prospect; Danny desperately needed a break from the regular, stress-filled days of school.  It had been a really difficult year for him, so I was excited for the Hawaii unit. For once, Danny was excited to go to school, and we were both looking forward to a break from the endless worksheets.

I volunteered to make the Aloha brownies, as I particularly enjoy baking. Also, it was the only treat on the list that Danny would eat; he has a special fondness for brownies.

When Mrs. M sent home the recipe, however, I knew Danny would not be partaking of the Aloha brownies. It was filled with canned pineapple, coconuts and walnuts, then topped with a cream cheese frosting.  Mrs. M swore this was a treat that her students loved every year, which surprised me; I could think of only a handful of kids who would be willing to taste a flavor and texture combination like this, but who am I to question the teacher?

Everything that could go wrong with this psuedo-Hawaiian recipe did.  My husband couldn't find the exact brand and type of brownie mix on the recipe, so he substituted a different kind.  Not a problem, usually, but he picked a brand of Mocha-flavored brownies, not realizing this meant it was coffee-flavored. I wasn't too optimistic how coffee would taste with coconut, walnuts and pineapple, but I had no time to get another mix.

Also, the mix I used called for different proportions of oil and eggs, so I wasn't entirely sure what I should do.  The batter barely coated the bottom of the pan, so I decided I must not have added enough oil.  After scraping the batter out of the pan and adding more oil and an extra egg, I popped the pan of batter in the oven, hoping for the best.

Alas, I pulled a pan of  flat, rubbery brownies from the oven.  I figured the frosting would make up for the problems, but somehow it ended up tasting way too sweet.

Standing over the pan of mutant brownies, it struck me that this sorry excuse for a treat was a fitting end for the school year. Like the brownies, the year had been a disaster for Danny, academically speaking.  At the beginning, I had high hopes, but those hopes were soon dashed as I realized that none of Danny's teacher knew anything about autism.

I met with his teachers repeatedly. They made some very small changes, but they were stop gap measures and never got to the root of the problem, which was that Danny learns in a profoundly different way than most kids.  That shouldn't be a surprise given his autism, but somehow, none of his teachers understood this fundamental truth.

His teachers never got to know Danny. They didn't understand my son, and instead of trying to figure him out, they subtly blamed him for his struggles.  They spent the entire year trying to squeeze my square-peg kid  into the round hole, and it was harming him emotionally.  Just like I persevered with the brownies, even after they were clearly ruined, the teachers continued to teach Danny in a way that wasn't working.

But his teachers weren't the only ones to blame. I also blame myself.  You see, I didn't trust my instincts.  I let them talk me out of accommodations I knew would help Danny.  I didn't want to make waves or inconvenience anyone, so I let them convince me everything was okay.   I let them persuade me that Danny was no different than the other kids and that their teaching methods would help him eventually, though all the evidence pointed to the contrary.  I let them convince me they were doing everything possible for Danny, when in fact, they were doing very little. And what they were doing wasn't helping him.

It took me almost the entire school year to finally stand up for Danny and insist on certain accommodations, but by that time, it was too late to salvage second grade.

Just like those brownies.  After the baking fiasco, I wanted to dump the pineapply, coconutty pan of slop and make a pan of regular fudgy brownies, using my son's favorite recipe.  I knew the kids would gobble them up, but I couldn't do it.  I couldn't buck the system; I was hell-bent on following Mrs. M's orders, because she was, after all, the teacher; she must know what she's talking about.  I didn't have the courage to follow my convictions or instincts, just like with Danny and his learning challenges.

So, now those brownies have become a symbol to me, a symbol of all the mistakes I made last year.  But they are also a symbol of how I will be a better advocate for my son this year. There will be no more Aloha brownies in this house;  I am done following the rules.  I am done ignoring my instincts.  I am going to push for the services and help my son needs, no matter how much it inconveniences a teacher.  I am going to quit letting people try to fit him into the round hole.

And from now on, I'm using my own damn brownie recipe.

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Patty is a stay-at-home mom to three wonderful kids, all of whom have Sensory Processing Disorder.  Her oldest son is also on the autism spectrum.  She is a freelance reporter for her local newspaper and started a LEGO Social Club for kids on the spectrum last year.  She blogs at Pancakes Gone Awry..

Summer is for Camp

I loved camp as a kid. If my parents could have afforded it, I would have shipped off the day school ended, and returned the day before it began. I was an awkward kid, with big Sally Jesse glasses and a bad perm, but at camp I found true friends. The kind of friends I failed to make at school, where the label on your jeans mattered more than your personality.

Plus, camp is just plain fun.

I always hoped my children would share my love for summer camp. When my daughter was born, I actually started researching day camps in the area.

I like to plan ahead.

Of course, I didn't plan ahead for Autism.

But, I didn't want Autism to mean she had to miss out on the best part of summer. So, when Katie was in Kindergarten I revised my search.

This time, I researched special needs camps.

The thing was, I didn't want therapy camp. My kid gets therapy at school, and at the time was getting therapy after school almost every day. The last thing I wanted to do (or that she probably wanted me to do) was put her in a camp that spent hours on therapy, instead of things like swimming, and boating, and crafts.

For a while I didn't think this kind of camp existed. Every camp I looked at was insanely expensive, and focused more on the "special needs" part, instead of the "camp" part.

But then a friend forwarded me a list of camps from a random listserv, and I found "the one".

A camp that was made for kids like Katie. That focused a bit on things like social skills, but was 100% camp. With canoes and kayaks and swimming and crafts. With camp outs and s'mores and games. Where K would get to do everything I got to do at camp, just with a 1:2 or 1:1 camper/counselor ratio, and small groups.

And it was only 40 minutes away, which, when you live in the boonies, isn't far at all.

We have found this camp to be far better than any of the inadequate ESY programs our town provides, which my daughter never liked attending, anyway. As she has gotten older (she'll be 9 in January), I have started to realize that a fun summer at camp trumps all the therapy in the world. She gets to be a typical kid, just with a little extra help.

For me, that is priceless. For her, it's just plain fun.

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Jen is the mom of two great kiddos, Katie, who is 8, and Ben, who is 5. You can find her blog at Still Looking Up, and you can follow her on Twitter HERE and on Facebook HERE

Tuesday, August 14, 2012


The bracelet arrived in the mail, small and shiny. I put it on my son’s four-year-old wrist, fumbling with the clasp.

For a few days, we both were acutely aware of its presence. When I tried to put it on him in the morning, Moe would squirm. I’d curse under my breath as I struggled to take it off at bath time. His wrist was pink where he tried to bite it.

I thought of the kids who wore this type of medical jewelry when I was young. The kid with the peanut allergy. “You can’t even use the same spoon as the batch with the nuts” my mom would tell me, “or he could die.” The diabetic kid at camp—the one I pretended not to stare at whenever he took out his kit.  My friend with epilepsy.

But Moe doesn’t have any of those things. In fact, Moe doesn’t have anything. My son wears a bracelet because of what he is, and what he might do.

Moe is autistic.

Moe doesn’t speak. He is unlikely to respond to his name. And he loves to run.

Like many kids on the autism spectrum, Moe attends a special education day class. My husband drops him off in the morning, and six hours later, I pick him up, chatting with the other moms as we wait for the teachers to bring out our kids.

Every day, I spy my little Moe, with his blue eyes and curly blond hair, walking hand in hand with one of the people I entrust with his education and his care. Every day they bring him back to me.

Except one day, when they didn’t.

I wasn’t worried at first. Moe’s class is often last to appear, as they are the smallest bunch, preschoolers slowed down by oversized backpacks and the frequent need to investigate some bug or crack in the sidewalk. But when the rest of the class had arrived and I signaled to his teacher, she made an excuse about a forgotten backpack. I saw her run back toward the classroom, and I knew.

They had lost my little boy.

For a few minutes, I waited there, the still center of a time lapse photo.  The other parents left. Teachers went back to their classrooms. The bus came and went. And I stood there, waiting.

During those seven or eight minutes, I thought of Moe’s bracelet—the one that had finally become part of his morning routine, the one he still fiddled with but no longer fought against. Why had I put so much faith in that thin piece of metal? It couldn’t keep him safe from the creek running behind the school, or getting hit by a car, or lost in the sea of children leaving school.

I still don’t know who found Moe, who had slipped into an empty classroom. His teacher brought him to me like nothing had happened. I cried on the drive home.

Later that day, Moe was wild. He ran maniacally around the house, screeching and crashing into the walls. I dodged his attempts to bite me as I wrestled him to the floor for a diaper change. His nails, overgrown because he refused to let me cut them, scratched red marks into my neck.

I was bursting with rage. Why couldn’t Moe just control himself?  Why did everything have to be so difficult?

And why wasn’t I strong enough to handle it with grace and good humor?

F. Scott Fitzgerald wrote that the test of a first-rate intelligence is the ability to hold two opposed ideas at the same time, yet still retain the ability to function. To be able to see, for example, that things are hopeless and yet be determined to make them otherwise.

By that definition, I must be a genius.

We parents of special needs kids face overwhelming joy and sadness, intense love and frustration, breathtaking wonder and fear—often in the course of a single day. We work tirelessly to help our kids succeed in the world, even when we have no idea what that success will look like. We are given so much reason to be hopeless, and yet, sometimes hope alone propels us forward.

And so it is that I send Moe out into the world every day, offering the only protection I can give him: hope, a hug, and a small silver bracelet.

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Jen Bush also writes at her personal blog, Anybody Want A Peanut? This piece was written for, and selected as a semi-finalist in the 2011 Notes and Words essay contest.

Saturday, August 11, 2012

Stay-cation Part II

My daughters continue to bronze nicely from their time in the summer sun.  As I mentioned last month, our family is doing the stay-cation thing this summer.  After Sylvie’s two trips to the hospital this last year, we decided to stay close to home. Partly we were so fatigued we couldn’t imagine packing for a summer get away, but also we worried about Sylvie’s health and want to be close to our medical home.  Lucky for us, Vermont is gorgeous and daily I feel grateful to be living here. No doubt the physical beauty and the sunny summer weather have made our stay-cation a little easier.  Nevertheless, when I saw Andy Singer’s cartoon, I sighed relief that indeed: “Sometimes the most radical thing you can do is stay where you are.”  It’s not just the physical state of staying in the beautiful geographic area where we live that is provocative. It’s also the idea that we don’t need to be running around to get experiences that are fulfilling.  Often those meaningful encounters and quiet moments are right in my backyard. They don’t have to cost a lot of money with lots of bells and whistles. For our family, inducing giggles, playing with friends, camping at the local parks, and hanging out is the best thing we can do.  Learning to settle for what we have instead of pining for what is not is indeed a good lesson to learn.

One of the other advantages of sticking close to home is being able to do some much needed house projects and continuing to improve our house’s accessibility so Sylvie and her care providers can get around easier.  Never did we imagine that our family would be the centerfold of this month’s Vermont Kids magazine addressing issues of accessibility.  The photo is from a local photographer who hangs out a lot with musicians and skate boarders, so the photo of our family bears some resemblance of a cool album cover of a local indie band.   But the photo is also a testament of the satisfaction of staying in one place long enough to actually make the space our own so that Sylvie can get in and out with ease.  It’s also a great chance for us to be part of the community social services and raise awareness of the needs and support that exist here in Burlington.  At the end of this month, we’re walking in Zoe’s Race 5K to raise more funds so that other families like ours can also get home improvement projects for their special needs kids.  For me, that is yet another good reason to have a Vermont stay-cation! 

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Kirsten is the mom of two lovely 6 years who will soon start first grade.  She also works as a professor at the State University of New York in Communication Studies. She thanks Andy Singer for permission of posting his cartoon and thanks to Matthew Thorson for taking nice pics of the family.


Winds of Change

Nothing ever stays the same.  That is always certain.  But our family is out for a new world record in the change olympics.  All for one reason.  

Our family changed four years ago when we adopted our first special needs child.  As per our agreement with his social worker we gave Marvin time to grow and adjust to us and we to him.  But then I got bit by the adoption bug bad again.  I figured I could just squeeze another little one into our mix and we would just chug along. 

Talk about stupidity at its finest. 

For this child I had to lay aside the job I loved, find a new church home, and my son has to switch schools to be closer to home.   Talk about some major life changes.   Is it worth it?  

Well, we think so.  This little bundle who is soon to disrupt our peaceful night slumber is going to bring us joy and more abounding love.  She was born premature, has vision issues, weak muscle tone, and a list of secondary and primary problems that would make anyone cringe.  Plus she is a legal risk adoption.  So why, some ask? 

Well the answer is simple.  Love.  Not to go all Hallmarky on everyone, but we think the risks are worth the outcome.  Marvin had many of her problems and we have weathered the storm successfully so we are ready to try again.  We have love, time, and resources to make this work. 

So let the winds of change blow away.  I'm not afraid.

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Amy is a wife and mother of a son with Shaken Baby Syndrome.  She is trying to adopt a second special needs child out of foster care.  You can follow her at her blog Many Kinds of Families.