The Tao of Special Needs Parenting

"It is as we expected," the geneticist said to me, "your son has Prader Willi Syndrome."

And suddenly, like my new born infant, I too began a difficult new journey.

My son's birth was traumatic and frightening. It was as if someone had maliciously thrown me into the cold, deep end of the pool, knowing I could not swim.

Instinctively, I realized, that in order to survive, I needed to keep my body in a constant state of motion.

And although this survival technique of treading water did indeed save my life, after many years of thoughtless, continuous movement, I began to realize, I wasn't really getting anywhere. More importantly, I was starting to become fatigued and dispirited.

As a parent of a child diagnosed with PWS, I am accustomed to chaos.

It is not unusual for my son to experience unexpected surgeries, unwelcome lab results, unusual seizure activity, poor cognitive testing and additional diagnoses. I am not complaining since it is this unusually high level of stress that has enabled me to understand the true meaning of the word resiliency.

But the greatest difficulty I face amidst all this hardship and stress, is my inability to find a sense of peace.

How do I disassociate my son from his syndrome, seeing him as a delightful boy and not a devastating diagnosis?

How do I stop living in the past, reflecting on his traumatic birth?

How do I stop fearing the future, and what life will be like for him when I am gone?

How do I help my family and I to live in the now, happy and unaffected by what may lie around the next corner?

How do I quiet my mind?

In trying to answer these difficult questions, I have discovered that my spiritual path has somehow become fast-tracked. It is as if someone pressed the fast forward button, hurling my life forward at break-neck speed allowing me to ask those difficult life questions now, enabling me perhaps to quickly discover my one true path.

Perhaps not coincidentally, I stumbled upon the word Tao, a word Chinese philosophers use to describe this spiritual journey.

In Taoism, the object of spiritual practice is to harmonise one's will with Nature in order to achieve effortless action. This involves meditative and moral practices, focusing on the concept of virtue.

Can you coax your mind from its wandering
and keep to the original oneness?
Can you let your body become
supple as a newborn child's?
Can you cleanse your inner vision
until you see nothing but the light?
Can you love people and lead them
without imposing your will?
Can you deal with the most vital matters
by letting events take their course?
Can you step back from you own mind
and thus understand all things?

The Tao philosophy also embraces the concept of "The Interdependence of All Things'. Taoist philosophers determined that everything has its complementary opposite. More than this, they saw that everything can only be understood by comparing it to its opposite.

Day is only day in relation to night, cold only cold in relation to heat, and soft only soft in relation to hard. Looking deeper still, they realized that these relationships are in a constant state of flux: Day flows gradually into night and back again.

All things, then, are interdependent. By observing the processes of Nature, the Taoists say, we can come to some understanding about the meaning of our lives and about our place in the world.

A Zen Master will describe our minds as loud drunken monkeys while our Buddha-self can only whisper. The monkeys must be soothed into a quiet state to enable ourselves to hear.

Ironically, my "disabled" son has always seemed to possess an "abled" and enlightened spirit. He is immune to the sound of screeching thoughts. His kind and gentle nature is incongruous to the harsh and chaotic lifestyle that we lead. I can't help but wonder if this too holds some significance?

Are the answers to my questions buried somewhere beneath these opposing influences?

Do I impose my will, making extra appointments with therapists and specialists, or do I need to embrace Nick's gentle nature, release my fear, accept our life and just enjoy the time we share together?

Perhaps to help my son, I must allow him simply to be.

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Lisa Peters shares her family adventures in special needs parenting at www.onalifelessperfect.blogspot.com. Come visit our blog to learn more about Prader Willi Syndrome, ADHD, Aspergers and our crazy life trying to find happiness amidst all the chaos.

Preparing for the Worst

We are on vacation this week. It's sunny. I'm with my family and my sister's family and our parents. There's a pool and generous amounts of oysters and adult beverages.

It was also interrupted by a crisis. Which isn't really surprising, I guess. On the first full day of vacation I received a call from our care team for our kids. They were very alarmed to get our son's lab numbers from two days prior that revealed kidney rejection lab numbers.

I was in a store to buy flip flops when someone on the team called to tell me to come over to the hospital, that they'd be admitting my son for IV fluids and steroids to stop his body from rejecting his kidney.

The story details are here.

I am not surprised it happened, this beast is everywhere.

I kicked into gear and planned out the different scenarios on the way to the city we had to go to for labs and treatment an hour and a half away. I helped prepare my son for what might happen. I preplanned a getaway trip for him since he would miss our family vacation.

It's what I do. I stay 15 steps ahead of where I am because our life demands it. The planning helps me cope with what might come. It gives me a control I otherwise do not have in very many facets of my life.


I'm not surprised I planned out the scenarios but I was surprised about the depth of fear I had for my son rejecting his transplanted kidney, even though I have always known this is a very real possibility for both of my kids.

The fear caught me so off guard that I have lost my footing on the beast, or the footing I thought I had on the beast. And I am not handling that well.



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Julia blogs at Kidneys and Eyes and started Support for Special Needs. She's hoping to raise activists and advocates in her two kids who've faced kidney transplants and need liver transplants one day, too. 

Only Human

He toddles around the room, a small ball of energy that is all boy, radiating joy at each person he encounters.  He flashes a smile, trying to elicit one from someone else, as he remains in non-stop motion.  He has a pinwheel sandwich in one hand, which he gleefully munches on in between smiles.  He is so engaging and his delight is infectious.

A pile of gifts sits to one side by the bride.  He looks inquisitively at the growing mound of trickets, household items, and knick-knacks.  He sees a blue birdhouse and begins to point.  "What's that?"  Someone offers a reply.  The sentences flow from his little mouth as he engages in a conversation with others in the room.  The topics are a litany of thoughts and ideas that can only be produced within the imagination of a very young child.  Superman gets discussed, as does a prayer.  Again and again, he returns his attention to the birdhouse with it's brilliant blue color.  After all, what could be more quintessentially boy than such a brilliant royal blue?

The situation should be one of joy.  One of pride.  One of enjoying the delights of a young child in your presence.  Only this isn't my child.  This is someone else's child.

This child is a year younger than mine.  He speaks in sentences.  He is engaging and social.  He is eating  - by himself! - all of the foods that we are.  He shows imagination.  Everyone is enthralled with his actions and his energy, as he brings nothing but smiles.

Except to me.  Sitting in my chair, I stare at the scene and feel a sense that doesn't come often, but when it does, it creeps up like a storm cloud, permeating the very air that I breathe.  It's heavy and envelops me like a wet blanket.  I feel a lump forming in the back of my throat and find myself, in the midst of so much joy, fighting back tears.

Though I try to not compare my child to others, especially NT children, I am only human.  For this reason, I tend to remove myself from the social scene of NT preschoolers and their families.  Like many other special needs mamas before me, I find my community and solace amongst parents who can relate to my situation - who just "get it".  As a result, I remain blissfully ignorant to the traditional trajectory of early childhood development.

Even in the midst of this bliss, there are the times that you can't help but look at the other children and you can't help compare.  When you see a child who is a year younger than your own, but who left your child in the dust developmentally months ago, it is difficult to put the comparisons out of your mind.  In a way, it just highlights your child's delays.  Here is a child who is a year younger, but my child is months to a year or more behind him - and that's with a 15 months (and counting) of intensive therapies.

I know that I can't completely shelter myself from these reality checks.  I can't remove myself from all aspects of social life that involve NT children, nor do I wish to begrudge the parents of these beautiful children the right to brag to anyone -including me - about the successes of their offspring.  Just as I beam with pride each time that Jack reaches one of the small but blessed milestones that our children work so hard to obtain, so I expect a friend of mine with NT kids to want to share her triumphs with the world.  It's not her fault for wanting to share, nor is it mine for silently feeling that sadness that I cannot share those same triumphs.

I try to remember that my angel's developmental path is, in and of itself, a detour from the norm.  Instead of a steady upward motion, with a plateau here and there, Jack's resembles the wires of his bead maze - with twists, turns, sharp inclines, and declines.  It's no one's fault; it's just who he is.

I try to be a very upbeat, optimistic person.  I try to look towards the positive.  The reality - the honest truth - is that special needs parenting is a roller-coaster.  You'll have both highs and lows.  Maybe the highs will be more numerous than the lows.  Maybe it'll be the reverse.  Either way, even the most positive person has to admit that, occasionally, our resolve weakens and we feel those slight twinges of pain.  The reality is that I will see the things that NT children can do that my son presently cannot and that reality will occasionally cause me to hurt.  We're only human, and everyone breaks from time to time.

I also have to admit that it's okay to feel how I feel, as long as I don't let my thoughts dwell in that dark place for too long.  I have to give myself permission to feel that brief sadness.  I know that, in the end, my weaknesses don't define my strength.

Ultimately, I have to pick myself up off the ground, re-abandon that dream of the NT path, and continue on our journey.



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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!

Fitting In

When is it time to try to fit into the crowd and no longer stand out?  Is there such a thing?  Or should we always encourage our children to be the unique individuals they are?

You see, Ballerina and Music Man are preparing to start kindergarten next month.  For the first time, Ballerina will be spending her entire school day with children who are considered "typical".  And Music Man will be with his neurotypical peers regularly between lunch and recess, specials, and various other activities.  Aspects of their Autism cause them to stand out and bring attention to themselves.

Music Man is a flapper.....the arms go and they bring his whole body along.  And he's a BIG boy so you have to be careful when those arms start going.  Dad and I have been trying to address this for over a year, trying to redirect him when the arms start to move by getting him to clap, or dance, or wave his arms in the air.  It's our thought that all 3 of these actions won't bring the negative attention that the flapping would.

Ballerina on the other hand doesn't flap.....she likes to recite rules and turns and schedules.  On a typical morning, she will recite her full schedule, in the minutest detail.  I'm including potty breaks in this.....a typical recitation begins, "Wake Up, Potty, Mommy and Daddy's Room, Get Dressed, Ponytails, <Music Man> Potty, Downstairs for Breakfast...." and it just continues from there.  This is something that she cannot do in a general education classroom.  On the plus side, she has been attending school in a kindergarten for at least part of the day since February, so she does have some experience and practice under her belt.

Why am I worried?  It's the "B"-word!  Yup, BULLYING!  I'm not so worried about things for this school year, but as they years pass.  They will likely be in school with many of these same kids all the way through high school.  13 years.  And kids have VERY long memories.  They will remember those "weird" kids who had those strange behaviors.  It can prevent them from making friends, even in kindergarten.  And not having friends ALSO puts them at risk for bullying as the years pass.

There really isn't too much I can do.  I have to trust when I send them to school that the teachers and other faculty members will keep their eyes open.  I will find ways to visit the school as a classroom volunteer.  Perhaps I will volunteer on the playground once a week.  And Big Brother has already promised to glance over at his brother and sister once during lunch and once at recess since they have these at the same time.

Perhaps, if I continue working on teaching them to "fit in", they won't be targets.  But I risk losing some of the things that make them who they are.  I appreciate their uniqueness....I really do!  But I don't want them to feel uncomfortable with who they are as they get older.  Sometimes I worry that changing some of these things I will be doing more harm then good.

I hate having to worry about something that hasn't happened yet.....about something that may NOT happen at all.  But as parents, so many of us do this every day.  And, as special needs parents, we do it even more.



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Ilene is a Stay-At-Home-Mom living in the Maryland suburbs of Washington, DC.  She lives with her husband of nearly 14 years (next week), her puppy and her 3 amazing and unbelievable children.....Big Brother is 7, Ballerina and Music Man are 5.  Ballerina and Music Man are twins, both diagnosed with Autism at the age of 26 months.  At that point, her life changed.....she found her new passion and has been working hard to make sure all of her children have a chance at success.


As you can imagine, things can get crazy from time to time, but that's just the way it is!  She blogs about it all on her personal blog (My Family's Experience With Autism) and you should feel free to stop on by and share in her stories!

Summer Holidays

No words... just happiness and joy... 

in the pool...

:o)

hand made by Loris... :o)

 

and it's only just a beginning...

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

Greatest Treasures

I have just three things to teach:

simplicity, patience, compassion.

These are your greatest treasures.

- Lao-Tzu

We've been going through the process of getting my son, Rojo, eligible for disability services. He was sixteen last week, and we're trying to get everything in place for when he turns eighteen. As anyone that's been through this process can attest, it's re-traumatizing. It puts a giant spot light on all that he cannot do, and says nothing of what he can. Last week we got the "good" news that he qualifies. I didn't know whether to clap or cry. 

I know that the world sees my son as disabled. I know some think of him as having an intellectual disability, then there's the autism spectrum piece with a side of ADHD. I don't, for the most part, think about my son as deficient in any way. I think of him as my sage, my teacher, my in-home spiritual guru. Like Lao-Tzu says, our greatest treasures are simplicity, patience and compassion. My son embodies these, exudes these, teaches these in every way imaginable and the only way that counts - by example.

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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. 

Sensory Input when the Power is Out?

For the past six days, we have been without electricity in our home.  A storm knocked a few trees over onto a power line and broke the electrical pole in half.

It was during one of the 100+ weeks that hit the Midwest in July.  Claire is already susceptible to dehydration because of her hydrocephalus.  Keeping her cool and overly hydrated is a high priority in the summer.  We realized, however, that there is something else that Claire needs to keep it together.

Her iPad.

It stores her music, a few shows, and some math and reading apps.  During this time of the power outage, not only did her iPad drain, but her password somehow was changed on it and it needed to be reconnected to iTunes and set up again.

Needless to say, Claire was without her iPad for about five days.  And she really had trouble.  We realized that she needs that input to calm her.  Music or TV, using her fingers to type and play games: it has become a sensory necessity for her.   Claire needs to be able to turn her brain off for times during the day, shut herself out from her world, and music or a quick show helps.  We always have allowed her to watch 20 minutes of TV when she came home from school everyday, in order to decompress from a busy day of school.  Apparently a non-busy day requires it too.

Many times over these six days, Claire constantly asked me when the power would come back on.  Clearly it was pushing her anxiety to the limits, which pushed her sensory needs to the limits too.  She took it out on her brothers by hitting, kicking, or bickering with them.  Books, painting, swimming: none of it could take her out of her world.

Thankfully the power has returned and my sweet girl has returned too.  Maybe it's time for a generator!

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Jennifer Giroux has too many titles to mention, but the most important ones to her are wife, mom, advocate, writer, sister, and friend.  She is on the verge of 40 and feeling it--inside and out.  She writes about  special education issues with her oldest daughter, who has hydrocephalus.  Check out her blog at www.afineconundrum.blogspot.com.

Manning up

Last night at the pool, some kids were picking on Danny. I don't think Danny even realized they were being mean to him, but I couldn't ignore it.  It wasn't too big of a deal; I confronted the kids in an appropriate manner and it ended.


Though it was minor, this incident has been nagging at me for the last 24 hours.  I can't stop thinking about the little jerks who teased Danny; I have written letters to their mothers in my head, I've gone over the interaction, changing my words so that those kids would miraculously understand, and like, my son.  I stopped myself at least a dozen times from posting something about the incident on Facebook; as much as I craved the validation, I knew I should let it go.   


But, I can't seem to, because it's not just this one incident.; there have been others, including some involving the same kid. Also, I can't stop thinking about the future;  I've been consumed by thoughts about what lies in store for my almost nine-year-old son.  Danny's autism makes him very vulnerable.  He doesn't always realize when someone is being mean to him.  


I worry that he'll be bullied.  I worry people will be mean to him; I'm terrified he'll be rejected and heartbroken by his peers.  


I'm sure you all know exactly the kind of worry I am talking about here.  


No matter what I do, I just cannot seem to shake this anxiety; it has been eating away at me, coloring every interaction and relationship Danny has.


This morning, as I tried to rouse my kid from his deep sleep, I had the urge to keep him home from camp.  Though the incident did not happen at camp, I wanted to keep him close.  I wanted to know that I was shielding him from whatever might happen out there in the big, scary world.   


I know that protecting Danny from everything is not an option.  It's not even possible, and it's definitely not in his best interest.  I reminded myself of this and of the fact that Danny is tougher than he seems. But as I sat in his bed, looking at his peaceful face, I thought, I'm not cut out for this.  I can't handle it.  I cannot possibly deal with watching my son hurt or mocked or bullied.  I just can't do it.  How will I ever manage it?  It will break my heart.


I sat there quietly crying, and that's when it hit me.


This isn't about me.  This is about Danny.  


Sure, it hurts me when Danny is picked on, but if I focus to the point of obsession on how it makes me feel, I won't be able to help him.


It occurred to me that I should man up, that I need to develop a thicker skin, because when Danny does come home hurt, I cannot break down. I have to stay strong for his sake, for all three of my kids, actually.
It doesn't matter how excruciatingly painful it is to watch my kids deal with challenges, I don't have the luxury of retreating to my bed and burying myself in escapism reading, though I have to admit I've been trying that method more than I should lately.  


I have to stop my self-indulgent freak-outs (and if that means I need some medicine, so be it).  I have to figure out how to let go of the anger and the fear, or at least get it down to a manageable level.


And I definitely have to quit obsessing over what might happen, because it's ruining the good moments.  


Because you know what else happened last night at the pool?  Danny showed me that he has somehow miraculously taught himself how to doggy paddle--with no lessons or instructions.  This is the kid who still cannot tie his shoes,  the kid who took forever to learn how to pedal a bike.  


Danny was so proud of himself, and I was proud, too, but instead of basking in the glory of such an amazing accomplishment, I let a couple of brats overshadow our excitement.  I let that one small incident consume me so that there was nothing left in my heart or brain to focus on how much fun we had.  I almost let those kids' actions ruin the entire night for me.

I'll be damned if I give any small-minded bullies that kind of power again.


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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 www.pancakesgoneawry.blogspot.com

Always Moe

I haven't been writing much these days. I want to. I want to keep a record of everything that has been happening. We're chugging away with getting Moe a new placement for next year. Lawyers are involved. Moe's ABA program has started. We've added more speech and OT for the summer.

But every night, when I sit down to write about it, I can't. Sometimes there seems to be too much to say. I cannot sum up. Other times, I am so exhausted I can barely keep a thought in my head, let alone write a coherent sentence.

But often, when I sit down to write, I have one crystal clear thought.

How are we supposed to keep doing this?

Moe, despite the language gain that I wrote about, continues to be aggressive, impulsive, and often completely out of control wild. It is beyond frustrating. Moe didn't have any ABA this afternoon, and in the course of a couple of hourse he broke a clock, took his diaper off several times, pooped in his swing, grabbed the dog, and swiped my glasses off at least three times. We had some fun water play outside, but he also spent a lot of time out there climbing the air conditioner and pulling handfuls of dirt out of my plants.

In other words, the same things he does every day.

I don't know how to teach him that these things are not okay. Time outs don't work. Redirecting doesn't work. I try to keep him engaged and he scratches or tries to bite me. Nothing seems to work to curb the behaviors for more than a few minutes. I don't like to yell at him but sometimes it seems it is all I can do. It doesn't help anyway.

I was so over his behavior that around 3:30 I put both kids in the car and just drove around for a while. Moe seemed relaxed and Jelly fell asleep. It was the only break I had all day.

I should take it day by day. But the voice I hear just keeps asking "how much longer is it going to be like this?"

I can deal with different. I can deal with delayed. We used to talk about getting Moe "back on track." No more. This kid is so far off track that we don't even know where the rails are anymore. That's okay.

But the aggression. Impulsiveness. Lack of sleep. Breaking things. Ripping books. Grabbing at anything in sight. Always afraid the next time is going to be the time our dog has enough and bites Moe. Always on alert. Always looking for triggers. Always interrupting Jelly to check on Moe.

Always Moe.



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Originally posted on my personal blog, Anybody Want A Peanut? I have been busy preparing for our fourth IEP meeting this year, which took place on Friday. Unfortunately, it looks like legal action may be necessary. 

Summer Snapshot

We've been having a lot of fun this summer.  When the girls finished school we settled into a nice routine - sleep late and then engage in lots of fun activities including swimming, riding bikes, creating crafts and hanging out with friends.  Stay up late and collapse into bed exhausted from the fun and then repeat the next day.  This was our reality for about 3.5 weeks and in a word it's been Blissful.

We are now in the 5 week portion of our summer that includes camp and school.  J, our oldest, is enjoying a mix of unstructured playground camp and vacation bible school and E is back at school for her extended school year (although it's not technically extended as she has the same number of days as other schools only it's spread over the calendar year instead of 9 months giving her weeks and weeks of vacation during the typical school year and some time in school during the summer).

J started back at camp a week before E started back at school.  I was looking forward to some one-on-one time with E like I had when J ended her school year a week before E's ended, but I soon found out E might be more ready to get back to her routine and spending lots of time with her peers.  Each morning when we dropped J off at camp E would love to hang out for a bit and check out all the activities.  It was clear that she wanted to stay and she would cry when we left and put up a huge fight when I was putting her back in her car seat.  It was enough to make my heart hurt.  I may have even cried.

I started to tell E that she is too young for J's camp and we could consider it for her next year.  But as I started thinking about that more I realized that camp wouldn't be a good fit for E.  It's unstructured and the children are free to do as they please during the day - partake in loosely structured activities or not.  E would likely choose to sit and watch the children all day instead of participating in activities.  She's an observer more than a doer.  I'll have to remember that next year when looking for summer camps and see if I can find one that would fit both girls so they can attend camp together.

E started back at school this week.  We decided to send her to school on the bus 3x/week and I'll drive her in 2x/week.  I was anxious about this decision.  I was wondering how E would do on the bus, how I will know she gets there safely, etc.  Then the day came when I sent her on the bus and she was over the moon happy to head to school on the bus.  I waved to her the entire time her wheelchair was getting buckled in and she smiled a bit then looked all over without a backward glance to me.  Finally the school bus aide pointed out the window to me so Emma would give me one final smile goodbye.  When I headed inside I promptly texted her personal care assistant (one-on-one aide) at school and asked her to text me when E arrived.  She did and continues to text me each day to let me know E arrived safely.  The next day the bus drivers came to pick her up and were telling me what a warm reception E received at school.  They said it seems like she is something of a local celebrity at her school with everyone coming over to say hi to her.  I know this is true because the same thing happens when I drop her off - everyone gives her a warm welcome and E flashes megawatt smiles at them all.

For these 5 weeks the girls' mornings will be filled with camp/school and our afternoons will continue to be filled with fun adventures together.  I have a feeling that before we know it we'll be headed back into the unstructured bliss the last 4 weeks of the summer will hold again.  Bring it on!



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Kristina is the mother of two charming daughters and wife to a wonderful man who puts up will all her wild ideas.  She works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.  You can read more at howlifehappens.blogspot.com

Summer Bliss

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My daughters are bronzing nicely from their time in the summer sun.  Yesterday we picked 10 pounds of blueberries; we’ve added most of these to the freezer stockpile of strawberries picked in June.  The tiger lilies are blooming and the days have been endlessly glorious.  We’ve been hanging out at the beaches of Lake Champlain a lot and using Papa’s new propane grill we got him for Father’s Day. I made the first batch of pesto this week, and we try to be a biking family in our bike-friendly town.  As Sylvie’s twin sister declared yesterday, “Vermont is a magical place.” 

Of course, she is also living on brown rice, cheddar cheese, fresh fruit and soft serve ice cream all summer, so what kid wouldn’t think she lives in a wonderland? 

There’s also a moderate level of summer bliss in that my girls both finished kindergarten in June with glowing reviews from their teacher.  I’m a bit stunned that Sylvie made it through the school year given her continual struggles with upper respiratory infections and the new addition of oxygen tanks in our house.  But then, I was surprised when she got to her third birthday, and her fourth birthday, and her fifth birthday and her sixth birthday.  Keep on surprising me little kid! 

This summer our family is doing the stay-cation thing.  Vermont is gorgeous and there are tons of state parks and mountains to explore.  Each morning I wake up, I try to think of creative things to do with my family, trying to let go of the school year hysteria and mayhem that swoops me up in unhealthy ways.  I want to pocket these sunny lazy summer days. It’s taken almost a month for me to unwind from my stressful job and the constant struggle of balancing work and family under what seem extraordinary circumstances. 

The last two months have also been a time to meet with our excellent medical team and the cadre of health care and social service professionals we have working with Sylvie. We are catching our breath and catching up on the paperwork and new state programs.  I am grateful to live in a state that really strives to have patient-centered care, and that as Sylvie continues to grow and get older there are services that benefit our family and her health tremendously. And regardless of how controversial all this new national Affordable Care Act is I am grateful that there are organizations such as National Organization for Rare Diseases (NORD) and the Global Genes Project who are advocating for policies that directly impact my family.  If I switch jobs or insurance companies, Sylvie cannot be denied based on pre-existing medical conditions. 

Just yesterday, the Global Genes Project announced that the new Food and Drug Administration Safety and Innovation Act (FDASIA) law “includes major provisions of importance to the rare disease patient community and creates several changes to FDA policy including a provision to empower the FDA to accelerate approval of life saving treatments for patients with rare diseases.”  This summer I’m working on generating some fun and peace for my family, so I’m grateful others are out there on the battlefields fighting these good fights so that I may have many more summers ahead with my little girl.

When Kirsten isn’t on summer holiday from being a professor of Communication Studies at the State University of New York, she is the mom of two lovely 6 years who are no longer in kindergarten!

Transition Traumas

Yes, I am proud to admit it, I am a creature of habit. Every day I get up at the same time, even on weekends, have about the same thing for breakfast in the same order, shower from left to right (alright, probably too much info, but you get the idea), and go on to work either at my job or my weekend tasks. I leave at the same time, drive the same way, and always always listen to the same thing on the radio (AFR if you are interested).

But lately, things have been really off. I went to Colorado for a family vacation so of course getting up at 3:30 am (5:30 our time) is kind of silly, I couldn't eat the same things for breakfast, and my days were not nicely organized. There was a lot of time to goof off and get really out of sync. I loved my visit and seeing my family, but when I am out of kilter things don't go well.

We have had more news on the baby. Harmoni. I thought it was pronounced Harmony but it is more like har-MAN-ee. Sort of like harmonica. Anyway, I digress. We had to make some choices about her. We are hoping to bring her home soon, but that is a little ways off. She is another post=). Her own post. Having a baby means transitions. And choices. Big choices. Life changing choices. Habit changing choices.

As a creature of habit it is hard to change. Letting old dreams die to bring about new ones. I am like the little kid scared to swim in the pool. I dip my toe in over and over and come out shaking. I have spent last week hoping that I could keep both dreams, but Shannon and I had to choose what dream we would follow. After much talking, praying, seeking counsel from trusted people, we made a choice. The death of an old dream for the birth of a new one.

It seems like I am talking in riddles, doesn't it?  For now I am still hurting too much and just needed a good place to vent. As I have always said this is much cheaper than therapy!!  I cling to hope and my faith that despite the winds of change that I will emerge stronger and able to handle all the transitions that life sees fit to throw at me!
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Amy is a wife, mother, teacher, and is in the process of adopting her second special needs child.  You can visit her at her blog Many Kinds of Families.

Summer camp.

Every summer since Graham's diagnosis, we have done what Graham wanted to do - which involved a lot of staying at home and a few trips to the park. 


This year, I got an awesome summer job as a preschool teacher for camp.

I was so excited that I accepted the job offer immediately. I didn't stop to think about Graham or his issues or how it would work for him to be in a typical camp for a half day.

It wasn't until a few weeks before camp that it dawned on me that there may be issues.

Suddenly I pictured a lonely Graham wandering alone around the pool, or him melting down in the classroom with a bewildered teacher, or just him being sad and overwhelmed all day.

Luckily, one of my good friends was his teacher. And his sister would be in the same camp as him.

Still, the first day I was terrified.

Every time the door to my room opened, I was certain it would be the director telling me we were all booted. That feeling lasted the whole first week. I was so on edge.

But guess what?

We're 4.5 weeks into a 9 week camp, and have had one issue. And we know the why, and we easily figured out how to stop it from happening again.

That's right... we. As in his teacher, the assistant teacher... even the director knows about Graham's issues (and even knows about his freak out) and still think he's awesome.

They have made accommodations for him without seeing them as a burden. He gets to be the 'play caller' at the youth sports activities. He walks around with the teachers and they sit with him so he'll get in the pool. They know to give him good advance notice on anything on the calendar for that day. They bring him to me (after asking him - which was the key to the meltdown) if they're in the gym and the class music gets too loud, or if he's outside and the bugs bother him.

I love that his teacher and assistant think he's hilarious and adore him. The director thinks he's adorable. And the other kids do everything in their power (ALL of them, I kid you not!) to make sure Graham is okay.

My worries and fears of 'what might happen' could have held all of us back from a great summer.

With the help of some wonderful people, we have had an awesome summer. My kids love camp, and I think there will be many happy years of camp to come in the future.


I'm so glad that I didn't overthink it. 



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Katie is a mom to two sweet kiddos, one with autism. She blogs at Okay, Who Turned Out the Lights?.

Even Brighter than the (Son and) Moon (and Stars), Moon, Moon

I won't like you better than the next person just because you have curly hair like mine.
I won't like you better if you agree with everything I say.
I won't like you just because we come from the same place.
I don't automatically like every family with special needs.
I don’t think my son is perfect just because he’s mine.
But I understand that human nature seeks patterns, feels comfortable with categories, often pairs off by attributes.

I hear so much about bullying these days that it’s ever present in my mind. I worry about my own children becoming victim, targets, as well as bystanders or perpetrators.  I take bullying seriously. And yet I worry about the word “bully,” sometimes, too. How it can demonize small children. The behaviors are serious, but the children are works in progress. For a boy like the Rooster, as he navigates his journey with autism -- so easily singled out, so often ridiculed, and lacking in the executive function to respond appropriately -- it’s often easy to be seen by the uninitiated as the bully instead of the bullied. It breaks my heart when all people can see is difference, and all they can do in response is label, demonize, isolate. I want to do all I can to prevent it happening to them, to prevent them from doing that to anyone else, to prevent even the appearance of them doing that to anyone else.

On the 4th of July we wanted to find a way to avoid the crowds, the loud noises, the stares, the potential conflicts and misunderstandings of typical celebrations. The Rooster bought a small remote control airplane at a yard sale, and at dusk we took it to the park to fly it with Peaches and J, imagining we would have the place all to ourselves.

Instead, we stumbled across a family, making their way to their secret spot near the baseball field, carrying the chairs and blankets and snacks they pack every year to watch fireworks at a great distance but in the comfort of their own little clan. The mother was blond, and I am dark, and we didn’t agree about the local school district, but we definitely come from similar places. Her son is autistic, her daughter NT.  

Our children ran joyously around the park. They invented games, they took turns flying the remote control plane, until at last the sky filled with an array of distant colors and we settled in to ooh and aah and cheer. Our small crew was alone, but together, on Independence Day.

On the one hand, it can feel hard to choose to celebrate off the beaten path. On the other hand, we often find we are never as alone as we think. 

Best. Holiday. Ever. 


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Rooster's Mom is a parent, educator, wife, mom, and writer. She blogs at roostercalls.blogspot.com.

The things we leave behind

The summer of 2012 will go down in history as the one where my sisters and I said goodbye to our childhood home, one tchotchke at a time. See, my mom passed away last fall, my father preceded her in death by about 23 years, but the home we grew up in remained her home until the day she died. Like many families, we put off cleaning out mom's things (and when I say mom's things, I mean all of her accumulated things, her mother's things, my father's things, my father's parents' and brothers' things: in short, lots and lots of things) until this summer when my three sisters and I could do it all together.

My parent's bought this house new in 1967. It was never a dream home, but it is solid and comfortable. We've never been the type of family to accrue museum-quality furniture and I highly doubt even most of our finest pieces would be eligible for a review on Antiques Roadshow, but they are still heirlooms, and then there is a ton of things that have no value except for our sentimental connection. As we go through the family heirlooms, it's overwhelming. There are so many items that our sisterly caucus agrees should stay in the family, but then with the sheer amount of things, we're all mentally finding space in our cupboards for them, or not. And while I'm desperately attached to certain things, I can't pretend that I'm not overjoyed that I "won" the family dining table and china hutch from my sisters, I'm also so overwhelmed by the thought that these things, these heirlooms, are not my family's legacy. My sisters and I are. Our children are. Our regard for each other: that is what our parents gave us that will outlive even the finest crystal.

I can't even begin to tell you how my parents created such a close-knit family, except that they were both exceptionally kind people who loved each other and their daughters very much. In that this is a special needs parenting blog, though, I can give you one example of how my parents taught us by example that doing anything you can for family is the most important job.

In the early seventies, pre-IDEA, my cousin was diagnosed with mental retardation (his presentation, if he were a little one today, would most probably be on the autism spectrum). They lived in a large town in a rural area, and the schools there were not yet able to accommodate his needs. I have no idea how it all went down, but in what I can only imagine was a heavy, heart wrenching decision, my aunt and uncle decided to send my cousin to live with my family, in our big city, where he could attend a special school for kids with disabilities. My mom, with me in diapers, my sisters busy with the frenzy of elementary school (brownies, girl scouts, soccer), became more than just Aunt Lucy to my cousin, taking him to and from school (a 30 minute drive each way) and being a mom for him when he missed his so much; all the while, she served on the PTA, keeping us active with church and community events. One of these days we'll find her calendar from those years... Last time I saw it my kiddo was just starting school and I marveled at how each and every day of the week she had appointments and events and get togethers scheduled. She was a super mom.

Today is my cousin's birthday, which is why he is also at the top of my mind. I hope that his time with my family, although I can't remember it (I was 2), was a positive time for him. I think about his time here and try to imagine being in the position my aunt was in, having to send her son away for three years just so he could be educated. I also completely understand the trust and love that our family has in each other, and I know that I am part of a legacy of love and caring that goes all the way down to our DNA.



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Molly is a mom, sister, cousin, niece, auntie and friend to a really wonderful family and an Occupational Therapy student living in Colorado.

Get in the Game

As I slid furiously through the dark tunnel screaming with glee, I could feel my four year old's hands gripping my legs tightly, we reached the open section of the water slide and I was still screaming. We reached the end of the slide with a sudden splash into the pool and an enormous sense of joy filled me.

"I wanna go again!" I hollered, my two typical boys were glad to oblige me. I felt as though they were enjoying my very rare sense of free spiritedness. You see most days I forget how fun it is to be a mother.

Tonight, my husband and my oldest son are off at the race car speedway. I'm here with the other boys, again. I wanted to go to the track. I'd gone last year and enjoyed myself throughly. The people watching, monster trucks so loud you can feel them in your chest, three specific kinds of stock cars racing in a quarter mile track and let's not forget the endless display of mullets. But I'm not there. I'm home. I just got my two little ones to bed and I'm sitting watching a NASCAR race on television. My mind's brewing with the unfairness of it all.

So often, under the guise of keeping my typical kids lives "normal" my husband takes them on trips to the beach, to the waterpark, to the race track, out of the boat for a day of tubing with their buddies, and the list goes on. I stay home with Dermot. Dermot cannot do most of the activities listed so it's decided that I stay with him. Sometimes I relish a few exclusive hours of alone time with Dermot, and sometimes I countdown how long until my husband gets back with my other boys so I can hear about the fun they've had.

But tonight, as I brewed all evening about how it's not fair that I'm the one who always has to stay home and my husband gets to go have fun, I thought about last night on the water slide. I thought about the joy I felt doing regular mom activities with my typical kids. I need more of that, I need to allow myself more joy. It's funny the sense of martyrdom I tend to have, I have signed myself up to be completely responsible for Dermot's companionship.

But what if I went to the race track? What if I went out on the boat? What if I was the one who took my other boys on these fabulous adventures? Maybe I'd be a more satisfied mother. Maybe I'd stop thinking I was the only one who should care for Dermot. Maybe my husband's perspective would change too. Dermot's almost six, I've been sitting on the sidelines far too long, I need to get in the game.

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Sue Sullivan is a mother of three beautiful boys. Two are typically developing and one has a rare mitochondrial disease. He is why I write. I'm on a 20+ year quest to be happy, joyous and free. She blogs at sullivanedinaboys.blogspot.com

And so it begins

The drama of re-entry that is.

My boys went to camp for a week, they had fun, they came home dirty, tired and full of stories. One of them  was happy to come home, missed us and plugged right back into his life, he is my son who is attached and who understands that no matter we are here for him.

My other son, the one who still struggles with his place in the family is finding it all rather difficult.He is in a word, a disaster. His emotions are all over the map, he is overwhelmed, frustrated and ready to burst if someone looks at him sideways. I say he is ready to burst but really he is bursting, he is so full of emotion that it bursts out throughout the day and we are all working on taking a step back when it happens.

It sounds as though he had fun at camp but struggled to get along with other kids. He has told me stories of some older boys who were there who reside in a foster home, he seems to think that their lives sound pretty cool. He has talked about fights with other kids and the wonders of mastering some paddling strokes all in the same breath which it makes so rt of hard to read how he is feeling about the experience.

I think he is struggling with his desire to have a life other than the one he is living. I think that he is wondering if life would not be more exciting if he were part of a different family. I think that he is doing that thing kids do when anything life would be better than the one they have.... I think I need to remember that I sometimes felt that way as a kid too. Perhaps tomorrow can be for normalizing those feelings for him because today I did not do such a good job of making him feel as though it was ok to wish that you were somewhere else.

Luckily for us tomorrow is a new day and we can try again.




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J is a Mom to 3 kids who walked in her front door at 6, 6 and 8,( currently 6, 10 and 12) they keep her on her toes with their antics but she would do it again if she ever had the chance. She blogs at Stellar Parenting 101 where she makes an appearance at  least once a week, or at least she tries to. 

If I had a do-over...

When I started this journey in autism world, I thought (bizarrely) that it was going to be a short trip.

Despite the fact that all the official literature said autism was a lifelong disability, the people we talked to used language that made us think it wasn’t going to be, for us. The paediatrician said Early Intervention was ‘the key’. The Early Intervention people said we should do as much as we could if we wanted a ‘positive outcome’. The other parents said Billy was ‘not so bad’.

What’s a gal to think in the face of such statements?

Nobody, not one person, said, ‘Oh sweetie, there’s every chance he’ll be autistic when he’s 50…’

So, if you are here, looking around for some affirmation (as I clearly was at the beginning of our time as special needs parents) that the autism will magically disappear one day, I wish you luck.

I am going to be the one to say, ‘It’s probably not going to go away.’

Sorry, but that’s what I have observed. It’s possible, but it’s currently not the most likely outcome. Especially if you are not deeply involved in making it happen.

If you want it to go away, you need to sign up to a complete change in lifestyle, and I’m not talking about moving to the beach (although that might help). It’s not going to go away just because you want it to, and it’s not going to away because your child ‘grows out of it’.

Change may come with insanely hard work, unspeakable amounts of time and a massive amount of change to your life. You may work your ring off, and nothing may change. Or everything might change. There are no guarantees, but definitely the vast proportion of people who have seen the results they were hoping for, strapped on the body armour for the long haul.

It’s probably worth mentioning here that I am not saying being autistic is bad, or autistic people are bad, or autism is bad. I need to say this out loud.

Here’s the framework, I’m working under…

As parents, all we want is whatever we define as ‘the best’ for our children. Good health, best possible chance to live the best possible life - that kind of thing. You want the minimum possible struggle, the maximum possible happiness and possibility… normal old parenting aims. I can’t imagine why, with a solid dose of acceptance and rationality, autism should change that aim.

If what my family is living, and what we have observed is anything to go by, autism – even the high functioning kind, is rarely a skippy walk in a quirky park.

Most surprising to me is the fact that it can morph into the truly scary, medically. No-one ever told me that could happen. And it has happened to at least a quarter of the kids I know. ‘It’ being seizures and other serious neurological conditions, mitochondrial and metabolic disorders, chronic mental illness, chronic gastrointestinal issues, major disabling regression, major motor and movement issues.

Billy’s medical life is complex and chronic, which makes me ever more screechy in my pleas to anyone who will listen.

We have a medical fraternity that questions our motivations, ignores our concerns, or judges our desperation. We take this from them, despite their almost total lack of answers. The statement, ‘It’s just autism, Mum’ is my least favourite.

I often find myself facing a doctor and thinking that inside their head they are thinking, ‘For Christ’s sake, the child is disabled anyway. What the hell does she want?’

I don’t know if they really do think that, but I can’t imagine any other reason why someone would give up trying to understand the reasons behind a child’s illness or worrying behaviour changes.

It’s a line that is easily misinterpreted, I guess.

I think the autism, in Billy, is very unlikely to disappear. Having said that, it’s the least of Billy’s concerns. I think the fact that he is autistic, shouldn’t be a reason to not unravel his GI issues, or understand his atypical seizures or his hearing issues.

More than that, I have grown to believe that the autism, in and of itself, is worth unravelling. What is it that makes someone autistic, and why are we all sitting around accepting a drastically accelerating diagnostic rate? At the moment autism is judged from the outside, by observing behaviours. It is insane to me that there wouldn’t be some shared biology in all the people who share the diagnosis.

There have to be some answers, and we are definitely not coming across medical professionals in Australia who seem like they are even posing the questions. If the doctors aren’t going to lead the way in the search for knowledge, then I, for one, am happy to stick our hands in the air.

I think it’s the only choice. It feels to me like we are on the crest of a wave. Which means we have to either crash on the beach and flounder about like stranded fish, or stylishly surf to a better place.

If I could have a do-over of our autism journey, informed by what we have learned along the way, I would throw us into biomed and I would place a much higher price on general good health and nutrition. I would spend less time being haunted by the lure of hardcore behavioural therapy, and more time listening to my child.

I would not allow myself to think that there was just one way to deal with autism, and I would document everything I heard and saw and thought about autism.

I would do this because I think, we – the parents, are it, really. I think the gathering of information and the acquisition of knowledge is up to us. I do not see how the medical fraternity can lead the search for knowledge when they are so clearly bound and compromised by their own needs.

So, even though you probably hate me right now for raising the ‘it won’t go away’ thing, you will learn to love me.

You will either love me because I spoke the truth and saved you a bunch of drama, or you will want to hunt me down and tell me I was dead wrong.

Man, how I hope I am wrong.

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Valerie's increasingly random ramblings can be found at Jump on the Rollercoaster. 

Friends make the world go round...

My son Nick is 13 years of age and he is autistic. He is quite the challenged teenager and due to this fact we don't have any kids knocking on our door to come and play with him. My son has no concept of sleepovers or the joys of playing sport. He doesn’t do movies or any of those other fun things that kids enjoy. He just doesn't *get* the whole friendship thing!

Although this saddens me immensely, I have to be thankful that Nick doesn't realise what he is missing out on! He is perfectly content with the people in his life, although he is an out of sight, out of mind type of kid (or so I think!). Perhaps one day, he will come to understand the true meaning of friendship. 


My precious boy is also not aware that he has actually given me a wonderful gift. He has given me my friends. It is thanks to him that over the last twelve or so years, I have met some really incredible people. 


In the early days, I didn't know a soul who had a child like mine. As you can imagine, it was a lonely time for me. However, as time has moved on, my circle of friends has grown and I feel very fortunate to share my life with each and every one of them. 


The internet has also brought new friends, wonderful people who all share a common bond....our children! We may not have met each other face to face but I can certainly feel the friendship connection. 


Last but not least, I must mention the friends that don't have a connection with autism and special needs, except through *me*. These friends remind me that life is not all about my son. They make me laugh. They make me forget. They are there if I need them. They make me feel normal. They keep me balanced.

"I get by with a little help from my friends." 

- John Lennon

I created this picture over at... 

keepcalm-o-matic

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Di feels that she really hasn't done justice to this post about friends. However, she is busy writing up lists for her husband and packing suitcases. In a few days time Di and her first born will be winging their way to the UK. She is not ashamed to admit that she is looking forward to some time away with her son Thomas. She also knows that her husband and Nick are going to be just fine without her!!!


Di blogs over at.... The Bright Side of Life
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A Watery Peace

Nothing is softer or more flexible than water, yet nothing can resist it.
Lao Tzu 

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It calls to him, drawing him in.

Water.

It washes down upon him, sending him into bliss.

A half-crooked smile spreads across his face.

Giggles come in fierce waves,

Emulating the splashing frenzy of his flapping hands.

Blowing bubbles, lapping up chlorine flavored mouthfuls.

Though in perpetual motion,

He is at peace here in this aquamarine nirvana.

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Aimee is an educator, wife, and the mother of 3 incredible children.  Sole (11) is a talkative, caring, budding adolescent and advocate.  Micah (8) is a sensitive, quirky naturalist.  Jonas (4) is the beautiful cherub: snuggly, funny, and wonderfully intelligent.  Jonas also has autism.   When Aimee is not writing here, she can be found at her blog Red Shoes, Autism Blues, where she documents her family's roller coaster journey with autism.