The Interview

My son, Weston is powered by high octane rocket fuel.  He runs, jumps, slides and whizzes through life at the speed of light.  He acts first and thinks later.  His favorite activity is making noise and lots of it.  In September, he is heading off to high school.

Holy shit.

Recently, he visited the local technical high school where he decided immediately, this was the place for him.  He was energized by observing unique classes held in work shops and auto garages. But it was as if his prayers were answered when he noticed students encouraged to get their hands dirty.

There were swarming numbers of new people, friendly faces unaware of Weston's social and academic difficulties.  He was surrounded by teenagers, who, like him, struggle to feel accepted.

He has told me many times that he is ready to quit public school and enter the working world. Yes, this new school option seems like a good fit for Weston.

On Friday morning, representatives from this technical institute will be visiting the middle school to interview potential applicants. Weston will be one of them.

He came home excited about his first ever interview.

He calmly explained to his clueless mother that the first thing we needed to do was purchase a new shirt, slacks, belt and tie.

I wondered who this child was standing beside me?

Over dinner, Pete and I decide to create a mock interview to help Weston prepare for his big day.

Pete began the rehearsal:

"So, Weston, tell me a little bit about yourself"

Weston stares blankly at his father and asks,

"Ahhhh, what do you mean?"

Not exactly a good first start for our aspiring young technician.

"You know, what is it that makes you who you are?'

"I don't understand?" he says, his voice sounding panicked and confused.

Pete is frustrated and searches for the correct wording.

"Describe yourself," he blurts, using the minimalist language Weston prefers.

"Ohhh!" Weston says, "Now I understand. Ummmmm, well, let's see, I don't know."

There is a long pause.

In my mind I picture the big burly interviewer laughing to himself as he whispers,

"Not a chance, kid!"

There must be something you like to do?" Pete asks, trying to regain a patient tone.

"I know, I like to play video games!" Weston answers enthusiastically.

Pete and I both sink in our chairs.

"Yes, Weston that is one of the things you like to do. But it is not what this school probably wants to hear," says Pete.

"Why not?" asks Weston.

Pete shakes his head and struggles to explain this one to Weston.

"Well, this school wants to hear about the things you like to do outside in the fresh air. They want to know what you do with other children."

Once again, the vision of the stern interviewer comes leaping to my mind as I picture him pounding Weston's application with a large red REJECTED stamp.

"I don't understand," said Weston.  His compulsive nature is now beginning to thwart his attempt to identify any of his other interests.

"Weston you enjoy riding your bike, going camping, taking hikes and playing basketball. You also participated in track last year. There are lots of things you like to do." I said.

"I know Mom, but I am afraid I am going to blurt out video games by mistake."

"Forget about it Weston," Pete says, "You need to just relax and be yourself."

Weston is now starting to visibly sweat. He takes a deep breath.

"Let's try again, I say calmly, "Weston, what are your strengths?"

Weston looks at me as if I am speaking a different language.

"I don't understand?" he says crossing his arms and slumping into his chair.

Silently, I begin to pray and visualize the mighty interviewer magically transforming into the gentle Mother Theresa.

"What is good about Weston?" I ask.

"Ohh, I see now, well" he says, "I have a big heart."

Now we're rolling I think to myself.

"What is something difficult that you have mastered?" asks Pete.

"That's easy," says the honorable Weston, "I take care of my brother."

He looks at us and smiles as he sits up straight in his chair.

"Can I tell them about Nick?" Weston asks eagerly.

"Yes, of course," says Pete, "It is an important part of who you are."

As I watch Weston's expression, I notice that for the first time during our practice interview, he is relaxed and comfortable. It is as if Nick's calm demeanor has transformed Weston's restless energy into a sudden burst of confidence and charm.

I think back to Nick's many hospital visits. The dreaded IV sticks that morphed the mild mannered boy into a screaming banshee. Often, it was Weston who single-handedly possessed the soothing magic to quiet his suffering sibling.

He has weathered ruthless attacks from callous teenagers who have called his brother a faggot and a retard. And although these ignorant remarks have wounded his heart deeply, as a protective older brother of a sibling diagnosed with special needs, he has found his courage and developed a deep and caring character.

Although he struggles with his own issues related to ADHD, it is clear to me that caring for Nicholas, has brought out the very best in Weston.

"Ask me about Nicholas," Weston says smiling confidently.

"How do you help your brother?" Pete asks.

Weston sits up taller in his chair and explains intelligently,

"Well, I help my brother when he visits the hospital.  He has been diagnosed with Prader Willi Syndrome and suffers from some night time seizure activity.  He needs to have an EEG performed once a year.  He doesn't like it because there are a lot of wires that need to be stuck to his head, to clam him down, I hold his hand and sing to him."

I feel hot tears begin to swell in my eyes. Pete has abruptly left the table and is headed into another room but not before I see him wipe his eyes.

"OK, Weston, great job, I think that is enough practice for now." I say quietly.

"Awww," Weston says disappointed that the interview has now come to a close.  He jumps up from the table, grabs his Ipod and heads upstairs dancing and singing along to his favorite tune. The fear and nervousness gone, the happy cyclone of energy has returned to his original state.

I try to collect myself in the kitchen and realize that although our mini interview did not produce stellar results, it has enabled me to better understand my son.

He is not phony or pretentious.

He has no desire to deceive others.

He is straight-forward and honest, with a pure heart and a true spirit.

And if you want to know the real Weston, just ask him about things he cares about.

Our mock interview has done little to help Weston. But for me, the lesson is priceless. If I really want to help my son prepare for his interview, then I need to allow him simply to be himself.

I have a feeling he will have no trouble explaining to the phantom interviewer, exactly what (and who) makes him tick.


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Lisa Peters writes about family life at www.onalifelessperfect.blogspot.com. Please come visit us. If you would like to learn more about Prader Willi Syndrome, please visit our national organization at www.pwsausa.org. For information on ADHD, visit: www.russellbarkley.org.  Thank you for reading.

I Am The Expert...

Parents of autistic children - indeed, parents of all special needs children - get bombarded with "experts" these days.  People who produce "studies" about the "causes" of autism - which never turn out to be actual causes - claim to be experts on autism.  Doctors offer solutions, diagnoses, and claim to be "experts" in their fields.  Therapists claim to be experts on how to deal with my child.  Even some autistics - certainly not all or even most, just a small but vocal percentage - claim to know my child better than I do.  This leaves many parents of autistic children feeling as I have from time-to-time, that I must not be able to teach, understand, or relate to my child because I am not an "expert".  Because I don't know autism as well as they do.

You see, two years into this journey has taught me a thing or two.  We would never assume that a parent raising a NT child cannot know how to best parent or make decisions for her child, so why would anyone do so with special needs children?  NT children aren't clones of their parents by any means, so I would argue that having NT children is no guarantee of being on the same page as your children, either.

It's time to call some BS, people.  You see, my journey has led me from being a scared mom when I first heard "significant global delays" and, eventually, "autism" in relation to my child to feeling like those words no longer scare me.  My boy is just my boy.

You see, someone else might be have a lot of knowledge in treating autistic children (doctors and therapists).  They might know a lot about the experience of living with autism themselves (autistics).  I hate to break it to them all, but autism is a broad diagnosis.  There are exceptions to just about every rule with autism.  

So, while someone might be an "expert" in the broader idea of autism, I have to claim that - in their dealings with my child - I am the expert.  Granted, my child is kind-of (according to his therapists) a "textbook" autistic kid, but I am the expert in the very specific presentation and set of circumstances that is Jack's autism.  I am an expert in the type of autism known by the name "Jack".

I'm not an expert in your child's autism.  If you are an autistic individual, I'm not an expert in your autism.  Each of our lives and those of our children, while they might bear similarities, are all unique.  I can only claim expertise in my own child.  Each of you can claim expertise in your own child, or in yourselves.

That's not to marginalize anyone, mind you.  The other voices are definitely important.  Doctors and therapists can guide and suggest ideas.  Autistics can provide insight and their voices can - and should - be listened to and heard.  After all, they've walked in shoes similar to that of our children.

However, if Jack were NT, whose voice would be considered paramount?  Us, as his parents.  Just because my child is autistic doesn't take away that unique concern, understanding, and foresight into our child that being his parents provides.  It is my heartstrings that get tugged with each struggle and tear, not anyone else's.

But who is qualified to decide if a certain treatment is too much, if a certain approach is not helpful, or if a particular idea is right or wrong for your family?  Well, as the parents of young children, it is you - and only you - who are qualified to do that.  Once your child ages, he or she should certainly have a say, as a family would allow their NT children, but until then, what 4-year old would get to make decisions regarding his own medical care?

Don't let bloggers, autistics, doctors, therapists, or the average person on the street make you feel like you don't know autism.  You know autism as it pertains to your child.  You know your child.

How do I know this?  How can I be so brazen to assert that I am the expert in the flavor of autism that is "Jack"?  Because I have grown him in me.  I felt his first movements.  From the moment I knew I was carrying him, his life has been forever intertwined with mine.  His struggles and his joys have been my own.  I have rubbed his back and rocked him when he was sick.  It is I who gets up with him at night.  It is I who feels his pain during a meltdown and his joy in triumph.  I have held him tightly through shots, evaluations, and more doctors appointments than a small child should ever have to endure.  I have kissed him and loved him even after he hit and kicked me in a rage.  I have held his hand and shed tears when he was being wheeled on a stretcher out of surgery.  I have known him and connected with him when words could not form that bridge.  I know him better than I know anyone else on Earth.

Doctors see our children a handful of times each year at most.  Therapists see them for an hour or two weekly.  Teachers see them for a few hours each school day.  Another autistic person might have never even met you child.  It is you - you as your child's parent - who knows best, if you block out the outside noise and listen with your heart.

None of those other people feel a piece of their heart leave each morning when your child gets on the school bus.  None of them cry when they see your child in pain.  None of them have shed tears when your child has cried.  It's not that they are unfeeling people, but that you have that unique connection with your child.  You know your child better.

See?  You do know your child better!  Don't be afraid.  Don't fight it.  Don't let anyone make you feel otherwise.  Simply surround your child with love, be open to his or her needs, and trust that having a special needs child didn't simply erase good parenting instincts.  If you parent with love, acceptance, and an open heart, I can't guarantee that you won't make mistakes, but you will be led right more often than not.

I promise you this, my friends, that there is no one - and I mean no one - who is more of an expert on your child than you.

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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3.5-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.  She has also been featured on The SPD Blogger Network and The Oxygen Mask Project, to name a few.  To follow more of her ramblings and get the latest on her posts, like her on Facebook or follow her on Twitter!

It's The Little Things

On Friday afternoon, I stepped outside to take Big Brother to his gymnastics class.  There was a very pleasant smell outside.....like someone had lit a bonfire or just simply a wood fire in their fireplace.  Being a bit of a flame-o-phile, I took in a deep breath before starting to pile my children into the car.

Then I heard the siren.  And it was close.  And I suddenly realized that the smell of this fire that I was enjoying smelled like it was right on top of me.  If it was a bonfire or a fire in a fireplace, it would have to be a distance away....but this one wasn't. I saw a neighbor outside and said that that it sounded close. He pointed behind me and I saw the smoke pouring out behind another neighbor's house.

Later that night, I read on Facebook a comment that the house was burning again.  I responded to the post and sent the writer a private message and learned that the house was for a fellow parent of a few children who attend the school my children attend down the street.  I know this Mom for she is a fellow volunteer at the school.  She lives in this house with her family, including 5 children.  My heart simply broke.

Fortunately, no one was hurt.  The mother was out when the first blaze occurred with the two younger children and the 3 older kids were able to get out of the house without injury of any kind.  But by the time the second blaze was out, all of their possessions had been destroyed or damaged beyond repair.

What if this had been MY family and MY house?  It was a regular fire, believed to be started by a clothes dryer.  Our dryer is running almost daily.  Two of my children are Autistic.  If we were in this situation, would they panic?  Would I be able to make sure they got out of the house safely?  What about my dog?  And what would I do if, assuming we all did get out without injury, if I were to lose all of the items that mean so much to me?

Some of the parents from our school and neighborhood have been doing all that we can to help this family get through this difficult time.  We are setting up some home cooked meals to be delivered to them at the hotel where their insurance is providing to them.  We are also donating food, clothing, and toys for the children as well as gift cards to some local stores so they can get through these next couple of months until their home is ready for them to move back in.  I'm one of the organizers.  People keep thanking me for doing this.

But I am not doing this just to help a neighbor or a friend.  I'm doing this because I'm a human being.  I'm doing this because, G-d forbid, if I was in this situation, I would want someone to do this for me.  I would want someone to help me figure out how to shoulder some of the burden.  I would want someone to help make my life seem a much happier thing than what I'm sure I'd be facing in my own mind.

I'm not an altruistic person.  I'm a selfish individual.  But sometimes, when the situation arises, they are one and the same thing.


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My name is Ilene and I am a SAHM with 3 amazing children, a loving husband and a dog.  My children are 7 and 6 year old twins.  Both of my twins (girl and boy) were diagnosed with Autism at the age of 26 months.

Life has gotten absolutely crazy for no reason at all these last couple of months and I haven't been able to blog as often as I like (barely at all).  But when I do, I do so at My Family's Experience With Autism.

Logistics

"That's how our life is, so we should probably start living it that way!" I replied defiantly to my husband. I was the driving the familiar route to the Y to swim with the whole family.
I had suggested that he take the two typical kids on a spring break trip and he balked at the idea that we wouldn't go as a whole family. How? I can't see driving twenty plus hours to Florida, let alone fly there. The last time we took Dermot on a plane we were very lucky to get first class and that his wheelchair wasn't trashed in the baggage compartment. On the way home we were in trouble. Dermot needs full support while sitting, we bring his large carseat and after that is installed in the narrow airplane seat, there's not even an inch of space left for his long, six year old legs. After we returned home from that trip I knew it would be a long time before we would travel again.
So I listen to your stories of family vacations to Steamboat or Orlando and I envy you. I envy your lifestyle that affords you the luxury of getting on a plane with your whole family and only worrying about keeping the kids occupied with iPads and coloring books. Not once do you worry if you forgot any meds or the extra feeding tube. Will the hotel have received the special delivery of formula? Does the airline have two first class seats (at no extra charge) to fit a mother and her son with low muscle tone and a giant car seat.
I sat with a sleeping Dermot in the family changing room, frustrated and defeated. There's three locker rooms at the YMCA, I tried them all and ended up here. With no proper table in which to change Dermot into this swimming apparel,  a back spasm was most certainly in my future. I could kneel on the cold wet concrete floor or hunch over and let my lower back complain about it to me now, as it is doing. The ibuprofen is trying to quiet the complaints, but I've about reached my limit.
Dermot weighs nearly 50 lbs. 50 pounds, up and down nearly seventeen times a day. I weigh 130 and am 5'4" tall. I fear that my body is failing. I fear that I may need to rely on others to lift and carry my baby boy. I'm angry about it.
Most times I'm okay with our daily life and the routines that complete it. But the back pain has been getting to me this week. An inordinate amount of ibuprofen hasn't made it go away. The elaborate foam roller and massage ball I bought yesterday will only partially relieve the syptoms. I know there's a transition time coming that means I won't lift and carry my son myself.
Logistics will get more challenging. Trips with the family will be segmented. Swimming at the Y becomes a pain in the ass...


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	Sue Sullivan is a mother with 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. Sue blogs at http://sullivanedinaboys.blogspot.com/

Man's Best Friend

Three years ago, at the urging of our behavioral/developmental pediatrician, we got our son, Wil, a dog. And not just any dog - a retired guide dog. She fell into our laps. It is perhaps one of the best law of attraction stories out there - we reluctantly agreed he needed a dog, decided to start the process, and two weeks to the day we had the perfect dog.

Flicka has been the perfect dog. She is mellow. She is quiet. She is cuddly. She is sweet. She is loyal. She follows Wil around the house like, well, a dog. When she gets up before him she waits outside his door, curled on the hardwood floor, cold and uncomfortable, as opposed to any number of warm and cozy spots in the house, and listens for the first stirrings that mean he's awake. That dog loves him, and that boy loves her.

She just seemed to know she was his from the very first moment. We did a few things to give her that message, like having Wil be the first one to meet her when we went to get her, then he led her around our house when we got home, and fed her her first meal. But I think she just knew because she's not really a dog, you see, she's an angel, sent from heaven years before we met her, just waiting for us to open our hearts and home to her.

Recently Flicka got super sick and had to be hospitalized. The vet feared it was some scary and fatal illness. Fortunately, and $1,000 later, we learned it was not - she just ate a sliver of soap from the wastebasket. I have never in my life been so grateful to spend $1,000, and be reminded it's only money, and a special boy and his special dog is... priceless.

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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. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.

Sharing the Love

We've had a rough go of it at home lately. Moe has been aggressive and not sleeping well. We've all had colds. The last few weeks have been permeated by a particular combination of grumpiness and malaise.

I don't know if it is because of Valentine's Day today, or because Moe fell asleep in his bed at 6:30 last night and slept through the entire night (I suspect the latter), but I'm feeling better today. And because this is Hopeful Parents, after all, I want to write about something happy.

We pulled Moe from school this year. We aren't exactly homeschooling yet, but we are doing a home-based ABA program. Most days, I'm desperate to have him at school. When he's home, I am part of everything. I change every diaper, witness every incident of hair pulling and scratching, and see every frustration. It is at once heartbreaking and exhausting.

But the other day, I was sitting at the table "writing" (read: facebooking) and drinking coffee while one of Moe's therapists was playing with him. He was giggling being really playful and I was reminded that when Moe is at school, I miss these things too. So I thought I'd make a list of some of the things I love about having Moe at home with me.

Things I love about being home with Moe

1. Hearing genuine giggles when he's having fun.
2. The chance for him to work in the backyard when Moe needs a change of scenery just because it is a nice day.
3. Trips to the grocery store together and having Moe help me push the cart around the store.
4. Not having to pack lunch for Moe every day. Added benefit: he loves to share my lunch, and will almost always try new foods if they come from my plate.
5. Hearing the cheers from therapists when Moe is doing well and having the opportunity to see his successes, large and small, every day.
6. Knowing that he is safe.
7. Knowing that I am there to provide consistency across programs and we can respond immediately if something isn't working.
8. Working with a small team who knows both Moe and me well.
9. Knowing that Moe works best in a 1:1 environment and not having to fight a school district to get it.
10. Seeing this face:

Happy Valentine's Day! Hope you get to spend as much time with your loved ones as you want today.

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Jen writes about Moe and his little sister Jelly at her personal blog, Anybody Want a Peanut? You can also find her on Facebook, where she spends most of her day.

Because Braille Matters

When we first found out that the children we would be adopting had "vision issues" I sort of blew it off.  After all, I wore glasses.  I can't see two inches without them.

Our son has detached retinas, and the most wonderful set of John Deere green glasses that you would hope to see.  He sees the eye doctor and reads big print.  O.K.  At five when you are learning to read it is all pretty big print.  He will probably always need bigger print, but we adjusted and dealt with it.

So when our daughter came along and I heard the words "vision issues" again, I just figured glasses done.

Well I started hearing other words.  Like Cortically Blind.  From the official papers we got with her she was a light seeker, which means she can see light.  How much we don't know.  We also learned that glasses cannot fix this.  Or surgery.  Because she was born at 25 weeks her eyes were damaged.  Top it off with nearsightedness and irregular optic nerves and you have a child with vision impairment.

In the beginning I tried to blow it off.  I thought surely she will see someday.  After all we are getting vision therapy.  Lots of people told me they were sure that her eyes were getting better.  Look at what she is grasping now.

But as time wore on I started to realize something.  I would walk into her room silently and she wouldn't look at me.  Her mama.  Her speech therapist was the first one to gently, but firmly tell me, "Amy, she does not see the way you want her to.  She may never be able to do that.  Cary is relying on her hearing to get by.  Maybe you should look into other ways of doing some of her tasks."

It hit me hard when I was reading to her.  I love to read.  I read anything and everything.  I read to my kids.  While I was reading to Cary trying to engage her in the book I realized that her vision was anywhere but the pictures.  I cried.  Tons.  How would my child ever read?

There are moments when you stop being a hopeful parent and become a realist parent.  So I turned to my friends at the Virginia School of the Deaf and Blind.  A woman there promptly sent me tons of information on braille and books for kids in braille.

So after reading and processing it I sent off e-mail requests for books.  I got put on two waiting lists as the need is great.  But one place answered my requests quickly.

There name is the national braille press.  I was able to obtain for free two bags full of goodies to help us in this new journey.  The bags were so full of helpful stuff.  The most exciting for my kids were the books.  In Braille.  Here is a picture of Cary's book in braille.

You can see the braille bumps on the bottom.  It also has words for us braille illiterate people.  The book is in long handed braille.  There is a more abbreviated version of it and I expect I will be learning it.  The bags came with lessons, tips, and hints for parents.  It talked about the importance of letting the child explore and not dragging their hands across it all.  So I let my son and daughter explore.  My son refuse to cooperate for pictures, but Cary couldn't escape the camera.  Here she is exploring her book.

Cary is fascinated by the braille.  I am fascinated by the fact that if I start her young, like now, and she has instruction in braille on a regular basis she will read just as well as a sighted reader.  That is exciting and gives me hope.  She may even out read her brother:).  But that is a different post.

So as my title states, braille matters.  It is what will unlock the keys to literacy for my children.  I would encourage you if your child has problems with vision, don't put it off.  Don't think that it is going to get better.  It may not.  There are so many great sites out there.   The one I got all the great stuff from (nbp.org) will send you free bags to help you out on this new world.  Because my kids matter.   Because helping them be all that they can be matters.


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Amy Fields is a mom of two special needs kids adopted out of foster care.  She is always trying to find ways to advocate for her kids.   You can follow her at her blog, Many Kinds of Families.  

Hotel Vermont

On Saturday it was a biting and windy 16 degrees above zero. The sun was bright, and Vermont has snow again.  I love living in a place that welcomes the weather and complains when Boston gets more snow than we do during the latest “blizzard” named Nemo.  Years ago, I would have been packing up my snowshoes to climb up a mountain in weather like this, but instead, I was humming the legendary Eagles’ tune “Hotel California” and packing my bags for another type of trip.  I pack light and bring only the bare necessities, including a toothbrush, a few oranges and an apple, a pair of slippers and cozy socks.  My beautiful daughter has hit the February blues, and we’re going back to the hospital to meet up with our doctor at the ER.  It’s not a frenzied rush to the hospital this time. We know Sylvie is parched; we cannot get enough drink in her and her body has become limp and her mouth and eyes dry.  I feel like I’m waterboarding her trying to get liquids into her—it’s a quiet drowning torture I imagine inflicting on her as she struggles with her latest bout of pneumonia.  I guess this is the time when parents know it’s time to throw in the towel and admit defeat:  “Get the damn g-tube installed in your kid so she won’t die of dehydration!”  Admittedly I’m a little edgier about Sylvie’s upper respiratory infection this week since our far flung Krabbe community has lost 4 little people to the disease this week alone.  

Even while U2s “Beautiful Day” blares on the radio as I pack the car, the resounding theme of this journey continues to be the well-worn Eagles’ tune: “You can check out anytime you want, but you can never leave.”  Yes my child, once again, we’re packing up to head to the hospital. And it’s a nice hospital as far as hospitals go, but I was hoping to do something a little different this Valentine’s week.  As much as I’d like to check out from this role of parenting a medically fragile child, I cannot leave.  When they took Sylvie’s x-rays last night, it was noted that she was at the hospital the same time last year for similar conditions.  Maybe if I imagine I’m packing for a weekend get away in the Vermont Mountains, things will be okay.   The Vermont Children’s Hospital is my allegorical version of Hotel California—the underbelly of living with a terminally ill kid.  While my neighbors and friends share fabulous pictures of their winter adventures skating, skiing out in the woods, or making cute snow forts with their children, I’m preparing for an endless and sleepless trip to the medical world via my version of a Hotel Vermont. 

 

Sylvie is now camped out in the executive suite of the PICU. The big south facing windows have an amazing view of the Champlain Valley: Lake Champlain and the Adirondacks to the left and Mount Mansfield to the right.  The pillows are soft, the nurses are hospitable, and the menu includes a variety of local meats, cheeses, yogurts and produce. The Children’s Hospital mascot is Monty the Moose, and I do love my Vermont wildlife.  The nurse told me last night around 3 a.m. that when Bill Clinton came to campaign in Vermont some years back, they used this very PICU room for medical preparations should the president have gotten shot.  Honestly, I’d rather be in some historical bed and breakfast in the Green Mountains, but for now, this will do. 

I’m not bitter that others are enjoying the winter in ways I can only now imagine.  I still like to sled down hills and cross-country ski and camp out in subzero temperatures, and I can only hope there will be a day when I can once again enjoy the cold and snow as much as I used to. But right now, the snow season is a sign that it’s pneumonia season.  And while I would rather be romping out in the snow with my kids and friends, I’m glad Sylvie is still around to love and hug in the warmth of Hotel Vermont.

When Kirsten Isgro isn’t vacationing at the relaxing Vermont Children's Hospital--Hotel Vermont, she is a professor of Communication Studies at the State University of New York and the mother of 7-year old twin girls.

Five years.

On February 17, it’s been five years since my little guy was diagnosed with autism. 

Five crazy years. 

This particular ‘anniversary’ has been really tough for me. I’m not sure if it’s the whole ‘half a decade’ thing or what, but this year is not as easy as the last few. 

So, in an attempt to turn this into a positive… I thought up things that my son has taught me. 

Things I’ve learned in the last five years:

It’s not always easy. I don’t even have to explain that one!

It’s not always hard, either. Believe it or not, between little man and his sister, he is the easy child. As he gets more and more typical, that is slowly changing… but autism does not always mean harder. 

There are a lot of really, really bad stories. That doesn’t mean yours will be bad, too. Read the news stories, and you can easily become terrified. But there are some awesome, wonderful people out there.

Which brings me to my next one… disabilities can really shed some light on the true nature of people. You will meet some of the most amazing, compassionate, caring people ever. And you will meet some heartless ones. It is like a spotlight for people’s character.

Sometimes it hurts really badly. There is nothing worse in this world than seeing your child struggle. We hit rock bottom this past year when I got a note home from the school that explained that my son was ‘at low risk for suicide’ after he told them he wanted to kill himself. It was devastating.

Being the parent of a special child changes you. You learn a lot about yourself and what you want to be like when you have a child that has special needs.

Experts don’t know everything. According to them, he shouldn’t be talking. He should be severely cognitively impaired. His latest IQ test shows him at or above average everywhere. They were wrong.

Never lose hope. The first three years of little man’s life were difficult. There was an incident where he threw a plate at my head and it broke. He would go into rages where I would struggle to protect myself, and end up covered in softball sized bruises from his bites. He would scream for hours on end… and there was no way to console him. Suddenly, at a little over three years old, everything changed. Like a light switch. Things DO get better. They have gotten better for us ever since – with blips of course, but progressively overall better.

Don’t panic. There will be setbacks. They are temporary. Take a deep breath.

Surround yourself with people that are positive. It makes a huge difference when those around you believe in your baby.

Special needs kids are amazing. My son works so hard just to keep up. Take a moment to let this sink in: In 5 years, he has accumulated 7,000 hours of therapies, services and intervention. This does not include the evaluations, doctor’s appointments to rule out scarier things, or doctor’s appointments to deal with autism or mental health issues. He works really, really hard all the time.

Sometimes I try to imagine what my son feels like every day. He knows there are things he is not good at, things that are hard that should come easy. He knows that he is different, that he goes to different classes. He deals with a sensory overload of activity, overwhelming noises and so much input at one time that his little body shuts down because it becomes just too much for him to handle.

But through all that, he knows he is loved. He is accepted just the way he is. He has a mom, dad, sister, grandparents, school, peers, community that adore him for him.

He has a team that believes in him and all he is capable of. That celebrates his unbelievable successes, and sees failure as a need to find a new road to success. They have the same ‘never give up’ attitude that he has. It is a blessing.

With that, I know that we can do anything. He can do anything.

He’s taught me more in his 7 years (5 with a label) than anyone else I’ve ever met.

He’s awesome, what can I say?

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Katie is a parent to two fabulous kiddos: one happens to have autism.

Win Some, Lose Some

There is a stage show where I live that presents mothers reading essays about their parenting experience. I went to it when it was running in the summer and loved it. I loved the diversity of stories, and the universality of them, and how I felt a part of it all just sitting in the audience, and I resolved "some day" to try out for the show.

Guess who is going to be in the May production? Yep. You guessed it: I sent in a piece during the open submission period in January and I am THRILLED to have been selected!

Now for something people would NOT guess -- certainly not people who know me or read my blog. Because if I said, "Guess what I wrote about?" most people would say autism. I tell people I wrote about my NT daughter and I see a flash of surprise. 

There are a countless thoughts that go through my head regarding that.

My essay recounts a day when I took just my daughter to the park. And I lost her. And for a few minutes I lost IT.

It's a typical story, I think, about a mother and a daughter, only, well, we aren't really very typical. And even though this was a story about my girl, the losing her, the losing IT, and even the experience of writing and sending in the essay, they can't not be about autism, and our experience with it, too, because it's a part of how we roll.

I am going to be in a show about motherhood. Autism is a part of my story. Sometimes it's a big part, and sometimes it's small; sometimes it is a hard thing, and sometimes it's a blessing.

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

Heartsore

I am finding it very hard to write for Hopeful Parents this month. I just don't have it in me to write a post that comes across as positive and hopeful.

Last week a very dear friend of mine was involved in a bad car accident. Unfortunately the car rolled and for some unknown reason the airbag in front of her did not activate.

As of today she still lies in ICU, heavily sedated with traumatic injuries.

I am devastated.

Why am I telling you this? Well, she is a mum just like you and me. She is a mum who has a child with special needs. We met twelve years ago when our children were two years old and we have shared so much over the years.

She is my friend.

Why is it that a tragedy is always a wake up call? A reminder that we don't know what tomorrow brings. A kick up the butt so that we make plans for the future of our  vulnerable family members who need us to care for them. 

Hug your kids and make that plan.... because you never know what is waiting around the next corner.



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Di has a 13 year old autistic son and she writes about their journey over at Bright Side of Life.

Six Secrets of Happiness

Frequently when expectant parents are asked if they want a boy or a girl

They say - "I dont care - as long as its normal and healthy "

But some of us, like me, we don't get that normal child

And instead of being the end of joy like we thought it was

It can become the  beginning of it

Like it did for me.

No- my child is not closer to god (or atleast not more so than any other child ), or possessing of some special gifts ( or atleast not more so than any other child )

And yet I most days , I am happy

Some days because of what happens , some days in spite of what happens

One  of the gifts of autism has been that it has made me examine happiness - the hows and whys of it

Here are some of my happiness insights .

I hope they will be helpful to you

Secret 1: Choose to be happy  

Bear with me here -you could say - well-what-if-you-were-being-tortured-by-a-serial-killer-could-you-then-choose-to-be-happy?????

I would answer - no perhaps happiness is not a choice in that very specific situation

But, barring exceptions - most times, we can in fact, choose to be happy

Even  a day like today - when my car broke down, work basically involved taking 2 steps forward and 4 steps backward, my son vomited which means his tummy troubles are back , I found out that I really could not get out of that cell-phone plan - there were plenty of good things too.

What I focus on determines how I feel

Secret 2: Using exaggerated positive words and not exaggerated negative words

How many times do we use language like

"The presentation was a disaster"
 I could have died of shame"
"I made a total fool of myself"
"Those moms must  think I am such an idiot"
"How do I keep gaining pounds back again - I have  zero will power"
"I am so stressed"
"My head is going to explode"

In this way, we interpret and describe our experiences and our life to ourselves

.For instance,  for some people talking about their stress helps them.

For me, it often adds an additional layer of stress ( from thinking about  being stressed )

I try to watch my words and not exaggerate the negative and give it so much power.

Secret 3: Experience life don't perform in it

When you think of your life- think about trying to experience it with joy.

Don't think about how well you are performing in life in your various roles as a woman/wife/mother /manager etc

My friends and I often talk about the to-do list that we all seem to have running in our heads

The project to complete , the next hill to take,  that IEP to modify  , that kitchen to clean,

And yet , surely we were put on earth to do more than lose weight and clean kitchens?

Even when those chores are necessary, its so  important to not define myself by how well we  are doing.

Secret 3: The secret of positive thinking ...is to think negatively in the short term

Expecting things to go wrong and thinking of that as normal is one of my main ways of being positive

I know its very counterintuitive but try this today

Expect that every other thing that you do will not go as planned

The thing we should visualize with positive thinking - is that when things go wrong ( for they surely will)..we will be okay with it !

Secret 4: The Secret

A few years ago a book came out "The Secret"

 Everybody talked about the laws of attraction and how by thinking of good things the universe would send those things your way

Its also one of those seductive theories that are impossible to disprove

If something good happens - Guess what? You attracted it with all those positive thoughts

If  something bad happens? - well clearly you were not positive enough !

I don't believe in the secret - but for far  off things we have no control over - I think it kind of works

For one, its no good worrying about far off things

And for another it changes our behavior.

And that can change  the outcome

Secret 5 : Practicing Gratitude

Think of yourself as lucky and blessed.

 If you know where your next few meals are coming from - you are luckier than a 3rd of the world.

The problem is that we usually tend to compare with those who seem more fortunate than us

The other day we were discussing an article about how Facebook can lead to feeling depressed

For special needs mums - it can be special stab in the heart

As our friends post about their perfect children - we wonder how we started the same way and then went on these separate paths

A friend had this insight that people only post about the perfect bits of their life and maybe in reality their real lives are different than their facebook lives

While that is true to an extent, I think it is very likely  that some people have it easier than us ( just as some others have it harder than us )

But the point is not how much better or worse we are doing than someone else

The point is really how we feel about ourselves and our life.

And practicing Gratitude

Secret 6 : Happiness takes practice

Most people think of happiness as a result of some event

But I feel that happiness is a practice .

Neurologists  says "Neurons that fire together, wire together "

Every time you walk down a neurological path thinking thoughts like "I am grateful" Life is good", you make it easier to walk down that path again

The world is a very good place. It is also frequently quite an awful place

Ditto with people

But I try to be the sort of person that say life is mostly good and most  people are basically nice.

In this way, I frame my life to be the sort of life feels  good to be in

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Hi I am Floortime mama and I blog about love, life and autism at Floortime Lite Mama

"The Resilient Caregiver"

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Well, missed last month again due to the 8^th hospitalization since the transplant.  Which brings me to today’s topic:  The Resilient Caregiver.  I’ve just found Dr. Eboni Green’s free caregiver broadcasts and the “resilient caregiver” resonated with me.  She also has other foundations of caregiving such as balancing work, etc. 

How do families keep going in their caregiver roles long term? 

Strength is definitely needed.  But to maintain that strength, caregivers need to take care of themselves in order to take the best care of their loved ones.  Strength and self-care come from various sources:

Physical

    Eating right and exercise are the common cry but how do you do this?  Once we realized our stay would be months, we stopped eating cafeteria/fast food and brought a week’s worth at a time and stored it in the family lounge.  Sometimes hospital social workers will provide food vouchers for the child or their family.  Hotels and Ronald McDonald Houses have gyms.  I walked to the hospital and used the stairs.  Sometimes when my child slept, I did yoga, reiki, qigong or stretching in her room.  Also, I walked the hospital corridors with my child (also to keep her healthy) and when she wasn’t able to walk, we used a wheelchair to make the rounds.  Also, when my husband got run down and sick from commuting out-of-state daily for weeks, I told him to just go to work and come to the hospital on weekends.

    This also means keeping your own doctor’s appointments too to maintain health.  When I broke a tooth down to the jawbone while my child was in the hospital (of course is there any other time) I found an emergency dentist by asking people at the hospital and where we were staying who they used.  The emergency dentist filed it down then mentioned surgery.  I called my home dentist and he said give me an hour and I can fix it without surgery.  So I had a one-to-one stay with my daughter for a few hours and it was the only time I left her during the day in the year and half of hospitalizations but I knew I couldn’t risk infection and complications.  My daughter also broke her retainer in the hospital (where else) and I found that if you tell your family’s doctors, they will accommodate with emergency appointments when needed. 

Mental/intellectual

    This one is the easiest for me because it’s how I deal.  I find out as much as I can about my child’s condition and treatment options so I know I’m making the best decisions for her care.  Many hospitals have in-room computers or family libraries.  My dad also researched and regularly sent me links.  Occasionally I asked the nurse if I could print something to share with the doctors.  Sometimes others working with my daughter like teaching, occupational/physical therapy, music, art, told me to take a break (and sometimes they had parent stress reduction events).  When my daughter was too sick in ICU and I couldn’t research at all, I waited until my husband was there on weekends.  I attended daily doctor’s rounds to get the most up-to-date information and ask questions.  I also kept a folder with a medication list updated with changes and notes on unusual vital signs, test results, treatment, and what had to resolve before returning home. 

Emotional/spiritual

    This was the hardest one for me.  There was no time to process and as I was on my own during the week I had to act like everything was fine in front of my daughter.  No one asks you how you’re doing when you watch your child being rushed to the emergency room, transported by ambulance to another hospital, or intensive care unit, not sure if she’s going to make it.   My daughter coded in ICU and then I had to go in the room minutes later when she was awake but on a ventilator and be brave for her sake.  When I felt like I couldn’t help do my daughter’s personal care when she needed me most (because she was hooked up to 6 pieces of equipment), the hospital social worker reminded me I just needed to be her mom, not her nurse.      

    Parents can also connect to Parent-to-Parent and my coworker who represents P2P visited me as did other coworkers (when I didn’t know how much I needed the support).  Also, make a “phone tree” where you call one family member who updates others (e.g.  a parent can update your siblings) and your closest friend who can update the others.  We only used our cells for emergencies before but even the phone company was understanding and gave us a break for a month when we went over our minutes, then upped them.

    For those of you like me who struggled spiritually, I highly recommend Dr. Green’s book “At the Heart of the Matter:  A Spiritual Journey for Caregivers.”  The book gives caregivers the “opportunity to personalize his or her caregiving journey based on their individual needs.”  Remember that spirituality doesn’t necessarily mean religion (though she does mention); it’s whatever the personal transformation means to you.  The book has inspirational quotes, poems, thinking points, caregiver assessments and short chapters as time is limited for caregivers.    We also found a “soundscape” TV channel that was on most of the time.  Sometimes we sat on the “bridge” and looked at the garden across the street.  There was also a hospital chapel, and a mosaic mural in a quiet corner.   

By taking care of themselves in these areas, families can truly become “resilient caregivers.” 

Remain hopeful,

Lauren

Resources:

Caregiver Action Network (formerly National Family Caregivers Association)-Caregiver Toolbox http://caregiveraction.org/resources/toolbox/

Caregiver Support Services –Dr. Eboni Green  www.caregiversupportservices.org

& radio broadcasts/playback www.blogtalkradio.com/caregiversupport

Parent-to-Parent (matched with trained volunteer parent) www.p2pusa.org 

Lauren Agoratus is a parent/advocate who serves as the NJ Coordinator for Family Voices, a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.