Friday, December 28, 2012

Snake Oil

If you are initiated into the world of special needs parenting, there are some very unusual skills you must develop. One of these skills is an ability to evaluate and implement the growing list of new vitamins, supplements, important medications and therapies that may improve the quality of life for your child.

Unfortunately, however, in developing this skill, we become particularly vulnerable to the sales efforts of a legion of carpet baggers, charlatans and pharmaceutical drug reps.


As a parent of a child diagnosed with an incurable disease, there is a very convincing inner voice that whispers in your ear.
 
"You must try everything. If there is a chance to help your son in any way, you must take it. If you look like a fool it does not matter. There is nothing more important than the health of your child."
 
But staying abreast of the "latest new thing" is a daunting responsibility.
 
You must sign-up for countless yahoo groups, facebook pages and twitter feeds. You must join national organizations, befriend PWS experts and participate in conferences. You must read every blog and every comment ever posted about Prader Willi Syndrome.
 
If you are a special needs parent, the ability to jump on the band wagon is not just a frivolous pursuit to keep up with the Joneses, it becomes an important way of life, a means of keeping informed of important new treatment options for your child.
 
The tricky part is learning to discern which treatments are good medicine and which are nothing but snake oil.
 
In our PWS community, it begins with a "buzz word" that starts to reverberate throughout our desperate ranks.
 
Unusual words like CoQ10, carnitine, melatonin, vitamin B12 and PharmaNAC are ease-dropped into our daily conversations. Slowly at first, and then building in intensity until they are spread through our airwaves like viruses.
 
Of course, each of these products serve a different function. Some propose to give our children more energy, others will help them to sleep better, there are even those that claim they will help control appetite, anxiety or skin picking activities.
 
My job as a "good parent" is to evaluate them all or face the unwanted scorn of my fellow parenting colleagues and PWS professionals.
 
So, in an effort to remain in good standing within my small community, I try them all.
 
 
 I must admit, at times I feel like a desperate and gullible mother, bringing her child to the latest wild witch doctor who waves his magic feather wand over my suffering child and proclaims with spiritual reverence and mad man intensity....
 
"Be gone evil spirits, be gone!"
 
I have spent countless dollars on countless boxes of vitamins and supplements that now sit untouched in the dark confines of our bathroom medicine cabinet.
 
But I have also discovered important therapies and treatment options that have made a significant difference in the quality of life for my son, treatments such as growth hormone, abilify and provigil, medications that have enabled my son to overcome obesity, manage anxiety and sharpen his cognitive focus.
 
So, I will continue my quest as the ever-evaluator of snake oils.
 
I will buy every magic pill recommended by my fellow comrades-in-arms.
 
I will fulfill my role as a "good parent" until one day perhaps we will find a legitimate cure that will enable my son to live a happy and healthy life, free from the effects of a terrible disease.
 
I will never stop trying to find a cure for my child.
 
 
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Lisa Peters, an ever-evaluator of snake oil, is also a mother of two children and author of the blog, www.onalifelessperfect.blogspot.com. To read more about our family adventures, please come visit.

Thank you for reading.

I would like to wish all of our readers a very safe, healthy and happy new year!

Tuesday, December 25, 2012

Christmas Day


I've been writing here for a couple of Christmases now, which means my day to post is always the 25th. I post here every month with confidence, yet I've found myself on this day with an unneeded amount of pressure on this day, Christmas.

I don't know what my problem is, but if I had to guess it's the pressure of wanting to write something profound on this religious holiday (without sounding religious). Something hopeful. Something that is important to say about the past year, something that says, we as parents in this special club know a lot that typical parents don't. I really just want to express my appreciation, my gratitude.

I want to say thank you to the community of un-typical parents and caregivers for always being so open and loving. 

Thank you for being so kind and giving. 

Thank you for coming to the rescue of so many over the past months. 

Thanks for advocating for your kids making it easier for others behind you. 

Thank you smiling that knowing smile to another parent you can tell is just learning what their child's disability really means for their life. 

Thanks for helping the parents and caregivers behind you know they can do it. That they have what it takes. 

Thanks for fighting the fight because someone has to do it, but not everyone can. 

Thank you for making me feel welcome in a world that sometimes makes me feel unwelcome. 

Perhaps my friend, Rob, said it all here in Christmas Eve on the Island of Misfit Toys and I'm just trying to echo what he's said. Thank you, thank you.

Merry Christmas to those that celebrate, Happy Tuesday to those that don't, and I wish peace and understanding to us all.

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Julia writes at Kidneys and Eyes, co-founded Support for Special Needs, writes at Aiming Low and survives on Diet Coke. She's married to a guy named Julian (true story) and has two incredibly cute kids.

Thursday, December 20, 2012

This is My Autistic Child

This has been a week of much darkness for our nation.  The lives of 27 innocents - many of them young children - were lost in a single act of unspeakable violence.  The individual who perpetrated those very acts was someone who is reported to have been on the autism spectrum, and as a result we've seen the media and the public latch on to the misguided and incorrect idea that there is a link between autism and planned violence.

I could rail on about the way in which is it wrong to compare my child to another human being - particularly one who is responsible for such a heinous act - simply on the basis of a shared diagnosis, but that doesn't accomplish my ultimate goal.  I've already addressed that in a post yesterday titled Simply Evil, but I want - I need - to move on from that place.  Pointing out the misconceptions only goes so far.  What I want is for the world to see my boy for who he is, not who they imagine him to be.

In order to break down the ignorance, bigotry, and misconceptions about autism that are flourishing in light of such tragedy, we need to show the world just how wonderful our children truly are.  We need children like my son, like your daughter, like your children, to be the faces that people see and think about when they hear the word "autism".  We need to steer the world away from their preconceived notions of autism and show them what autism really is.

It's time to bring the world into the light.

I would like to personally introduce you to my boy.  He's almost 4 years old (a fact that blows his mommy's mind every day) and he has multiple disabilities, with the primary one being autism.



My boy loves the PBS show Super Why!  His favorite toys are magnetic letters, his iPad (he loves his Thomas and Friends and Super Why! games), and bubbles.  He could pop bubbles all day long and gleefully squeals "More!" to ask for yet another shower of bubbles from either his father or myself.  While he doesn't eat many foods, he does love McDonald's French Fries...just like every other 3-year old in America.

Still in the midst of his "babyhood" - which autism has prolonged in a way that this mama has learned to appreciate - he wakes his mama up each morning with an adorable string of babble over the baby monitor.  When I enter his room, he is laying in his crib clutching a red sleep sack and looking up at the ceiling with a smile.  Seeing his smiling face greet me early each day is truly the best part of waking up.

He radiates joy when he enters a room.  I tell people often that my boy does happy with his whole body.  When he gets happy, he raises up on his toes.  He bounces lightly in place.  His hands flutter and flap, sometimes so vigorously that I think he might take flight.  A smile spreads across his face from ear-to-ear as he engages in this bursting forth of energy and happiness and light.

He works harder than most children his age have worked in a lifetime.  He spends hours each week in speech, occupational, and physical therapies and special education to accomplish what other children do so easily.  Would you know, he does it with a smile most days!  He puts forth so much effort each and every day.  As a result, each little victory - each jump, each word, each giggle - is a precious treasure in my eyes.  I couldn't be prouder of every single thing that he does.

And the words!  I hear people with typical children tell me that they just wish their children would be quiet, but I say never.  Let my boy speak and speak and speak.  Each word has been hard fought for and each word is one that I thought I might never hear.  Each word spoken in his tiny high-pitched voice is simply music to my ears.  I never tire of those little words, no matter the meaning.

My angel has a legion of therapists, teachers, aides, and other providers - in addition to a very proud Mommy and Daddy - who think he is one of the greatest people we have ever met.  He is sweet, adorable, and full of light and beauty and all that is good in this world.  To me, he is love personified.

There is not a violent bone in his body.  When another child takes a toy from him or hits him, he just stands there silently, looking at the ground.  He doesn't retaliate.  He lets the temporary assault roll off his back.  He simply turns off for a moment or two and then moves on.  No monster there, just someone who wouldn't harm a fly.

Just someone who is the heart and soul of his mama.  Just a little boy full of joy and happiness and all things good.  Just a little guy who is all boy.

Just a beautiful little boy with autism.

He is exactly what we should think of when we think of autism.  We should think of hard working children who need support to accomplish great things.  We need to think about those smiles, that outpouring of joy, and the brilliance that is each of our children.  We need to think of all of the good and decent and wonderful things that each and every one of these children bring to our lives.

So, I ask you to join me.  Share your stories below - either by attaching a link to a blog post of your own or by providing a short description - and introduce your children to the world.  Help the world see and understand and know our children to be the wonderful little people that they really are.  Take a look at the stories shared here to get a true understanding of the beauty and diversity and light that exists on the autism spectrum.

Let's see if we can make this happen.  Let's see if we can band together to paint a picture of how wonderful our autistic children are.  Let's make it happen and let's change the world.


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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, like her on Facebook or follow her on Twitter!

Wednesday, December 19, 2012

Safety Versus Pride

Have you ever been in a situation where you know what the right thing to do may be, but you just don't want to accept it?  You know you need to....there's no choice in the matter.....but you just want to convince yourself that everyone is wrong and you can go about doing everything in just the same way as you've been doing things?  That's what happened to me in the last few weeks.

My daughter (Ballerina) is a handful.  I'm not sure how much is directly related to her alphabet soup diagnoses (ASD, ADHD, POTS), and how much is just HER.  It all seems to come down to one thing.....she has to be FIRST.  She has to win every race, be the person to open every door and turn off every light, you name it.  Line Leader is her favorite job in her kindergarten class (and she's not alone in that one) and when you ask her what her job for the week is, that is always how she will respond.

All of these things have their annoyances, yes, but there's really nothing WRONG here (in my mind).  Yes, there will be tantrums when her older brother (Big Brother) manages to do something first, but we address those and are trying to teach her that everyone deserves a turn at being "First".  But she's taken this to a new level.  And unfortunately, she's done this in the parking lot.

Every day, I pick my 3 children up from the same school.  In order to make this process as safe and simple as possible, I make an effort to get to the school early so that I can park in a spot that doesn't require any street crossings.  I'm not always successful, but most days, it works.  And most days, it's the same parking spot.  I start in the kindergarten courtyard where I pick up the twins. Sometimes this goes smoothly, sometimes not.  But we do it every day and we have found a certain "routine" for this activity.  Then, we head over to the main entrance to pick up Big Brother (2nd grader, who is dismissed about 5 minutes after the kindergarteners).  As soon as Big Brother joins us, the race is ON.

Ballerina has decided that she needs to get to the car first.  She goes running off and Big Brother runs after her.  Big Brother is doing this on my instructions, to help ensure that Ballerina does NOT run into the parking lot with the oncoming cars.  But Ballerina just sees Big Brother taking chase.  And Ballerina's twin brother (Music Man), who has a recent history of elopement,  has to be a part of the game by body dropping so that it's impossible for me to go racing after Ballerina myself.

The school staff had watched my predicament (and has stepped in to help) for a couple of days.  When they realized that this was something that wasn't going to go away, they decided to REALLY step in.  A couple of days later, the new pick-up/drop-off routine was established.  Ballerina and Music Man are now picked up for school directly from my car in the traffic circle by one of their teachers and then returned there to me at the end of the day.  When they get back to the car, they earn a reward (small handful of Goldfish crackers) if they behave appropriately.

Don't get me wrong.....I am SO grateful that the school jumped in and took the initiative with something I don't know if I was comfortable asking for their help.  But when they first proposed doing this, the first thing I wanted to do was scream "ABSOLULETLY NOT!".  They already stick out with their odd behaviors (Music Man) and their constant shadowing in a mainstream classroom (Ballerina) -- this was just going to be another way in which they were different from the rest of the school.  But I knew I needed the help.  I knew that the suggestion was coming from the right place.  And I knew I couldn't do this alone, and I couldn't risk the safety of my children because of my own personal pride.

So, this is what we do every day.  And every day, I see the other kindergarten parents, picking up their children at the kindergarten playground.  But Ballerina and Music Man come straight to me.  And I know they're safe.  After what happened last week in Connecticut, it made me realize that it's these little things that we need to put aside because our children's safety has to be put above all else.....especially this Momma's pride.


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My name is Ilene and I'm a happily-married SAHM raising 3 amazing children and a dog.  My oldest child is 7 and I have a pair of almost-6-year-old girl/boy twins who were both identified as "on the spectrum" at 26 months (Autism diagnosis came about 4 months later).

Since then, I have been doing all I can to learn about Autism and to learn ways that I can help my children as well as others who are walking this same path.  I am a self-declared "Parent Advocate" and run a Facebook page (We Care About Someone With Autism) as well as blogging regularly (My Family's Experience With Autism).

I hope you enjoy our stories.

Tuesday, December 18, 2012

A Little Child Shall Lead Them

It's a little disorienting to have a child with special needs, that doesn't grow up at the rate of their peers. It's hard to see how time has marched on, when you have a sixteen-year-old that still insists on visiting Santa so he'll know what to bring him on Christmas. Who still squeals with joy when the Advent calendar comes out, and when the $.99 Trader Joe chocolate one comes home. Who can't wait to see their favorite ornament (a little bear) when we decorate the tree. Who talks about the lights, the stockings, how he loves our tradition of not eating breakfast until after we open the presents, who can't sleep at night he's so excited, and can barely get through the school day with all the anticipation.

I recently took Rojo to visit Santa, and blogged about my angst over that. As with most things, they don't turn out to be as bad or as great as we build them up to be in our heads, and visiting Santa was no exception. There were a few minutes of awkwardness and self-consciousness on my part, but zero on his. It's my own fragile ego that's the problem, not his lack of one. Of that, I am certain. One of these days I am going to remember at the time, that he is here to teach, not the other way around, and just breath through the moment with gratitude for the lesson(s) he's imparting.

I realize not everyone reading this blog celebrates Christmas, and that there are readers from all faiths and no faith at all. If Rojo has taught me nothing else, it's that none of that matters. What we label ourselves, what we believe, who, what and how we worship, none of it makes a lick of difference. Love is good, and that is something everyone can agree on. Rojo is here to teach "just" that. Love. Pure, unconditional, simple, innocent, everlasting and much-needed love.

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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. 



Sunday, December 16, 2012

I Will NOT Be Adam Lanza's Mom

"I wouldn't be shocked," I said to a staff member at the Chicago Public Schools on Friday when news broke that Adam Lanza had also killed his mother, "if I am one day killed by my son."

I've spent the weekend replaying that conversation, in disbelief that I've said this out loud to someone other than my therapist who hears it nearly every session. But I'm not the only member of my family thinking this. Just today, an immediate family member asked me, "Do you think this is something your son could do someday?"

Our eyes met, knowing the answer.

My eight-year old son has seven locked-down psych ward hospitalizations under his belt for being a danger to himself and others (namely, his mother). He has fought his way through life so violently that he has endured multiple injections of Haldol (a chemical restraint used in prisons), physical restraints to a bed, physical restraints by six armed guards at once, hundreds of physical restraints by therapists and counselors, medications that could tranquilize an elephant but somehow can't always tranquilize him, and excruciating time wailing in the so-called "Quiet Room" in the psych ward.

He is a child who snaps, who can become clinically psychotic and utterly dangerous.

But this is only one small, albeit loud, aspect of my beautiful child. He is also a child who took the candy canes he received from St. Nick to school so that he could share them with his classmates. He is the child who loves his brother so much that he offered to share his bedroom, even though there are two. He is the child who looks out for kids that bullies pick-on, and stands up for what is right. He is the child who hates imagining the day his parents are dead and gone because he loves us so much. He is the child who pines for his friends who no longer attend his school. He is the child with the purest of hearts, but a mis-wired brain.

"God gave him to us," said my family member. "He is our responsibility. It is our responsibility to him and to society to make sure this will never happen."

I looked at this family member all sorts of funny. As if I, or anyone, can stop a person in the height of a crazed, violent episode! Having been simultaneously the victim and the "first responder" during raging, dangerous situations, this idea that somehow it is my responsibility to ensure peace seems audacious at best, and utterly impossible in reality. 

But it is just this sort of thinking that will allow another Adam Lanza to strike again.

It is my responsibility to keep my son subdued as I have managed to do these many years. And do you know what? It's your responsibility, too.

Rather than insisting that we mourn and not talk about gun control today, we must talk about how to keep firearms and other deadly weapons from the hands of the mentally unstable...not only for their safety but for our own.

Rather than not uttering Adam Lanza's name so as not to provide him any more infamy, we must talk openly about how mental illness manifests in people...not only for their safety but for our own.

Rather than distancing ourselves from "the crazy people" in hopes that they don't bother us, we must understand how to help them...not only for their safety but for our own.

Rather than imprisoning people who are mentally ill, we need to provide them effective treatment...not only for their safety but for our own.

Rather than stigmatizing people who see therapists, we need to positively support them for getting the help they need...not only for their safety but for our own.

Rather than bashing psychotropic medications and focusing on their negative side effects, we must encourage people who need these medicines to take them...not only for their safety but for our own.

Rather than dismissing alternative medicines as quackery, we need to praise people for searching for help...not only for their safety but for our own.

Rather than secularizing the daily lives for those who are faithful, we need to foster the ideals of the Divine...so that all of us who pray may lift up those who need it most.

Imagine, for a moment, being the parent of a child who lost their lives at the hands of a shooter. It is a no-brainer that you would give away all your worldly possessions just to have your child back. If these lives are so precious to us, then we must be willing to help fund treatment and research for mental illness. Why not take that extra $5.00 in your pocket that you'll spend on a cup of personalized coffee, and give it instead to a charitable organization serving the mentally ill?

As for my responsibilities this week, I'm meeting with a special needs attorney, an at-home behavioral consultant, my own therapist, my son's therapist, and a state agency that provides support for those with mental illness...all so that I will NEVER be Adam Lanza's mom.

As for your part, please, I beg you, take responsibility.

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Christina Shaver is the founder of Hopeful Parents.

Saturday, December 15, 2012

Find Comfort. Find Joy.

Love and comfort one another (my kiddos) 

I had another post ready to go, but I'll save that for next month. Today, I just want to tell you to go hug your kids. Spend the day together. Get out and have fun. Find that extra bit of patience you didn't know you had.

Happy Holidays to all! Cherish one another. Tomorrow is never a promise.


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Jen is mom to Katie (HFA/Dyslexia) and Ben (boy). She lives with her husband, children, and too many animals, in small town New England. You can find her blog at Still Looking Up, follow her on Twitter @JenTroester, and check out her Facebook page HERE 

Friday, December 14, 2012

With Sorrow

I was supposed to write something here today.

I thought about writing about how we've been celebrating Hanukkah. What it is like to celebrate the holiday with one child with special needs, and one typical child.

I thought about writing about some of Moe's recent progress. About our search for an AAC device for him, or about visiting several autism schools, or the time I got into a spat on Facebook with an autistic adult.

I have a lot to write about.

But today, I, like much of the nation, sat stunned at the news of, at latest count, twenty children shot and killed in a Connecticut school. The horror is unfathomable. I have had tears in my eyes all day as I think of the horror of this day.

We parents of special needs kids know especially how vulnerable our children can be. They suffer abuses at the hands of those who are meant to care for them and teach them. But a bullet does not discriminate between special needs and typical child. When a gun enters a school, every child is vulnerable.

And so today, I come here not to write about my child with special needs. Instead, as a parent and a human being, I think of the families in Connecticut with the deepest sorrow. I hope someday they are able to find peace. I hope we learn something from this tragedy.

Most of all, I hope: never again.
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Jen Bush also writes at her personal blog, Anybody Want A Peanut?

Wednesday, December 12, 2012

Life changing devices

Yesterday, Dr. William House died at the age of 89.  Although we never met Dr. House he has a profound impact on our daily lives for he was the founder of the cochlear implant - a device that allows many people who are deaf to hear.  My daughter, Emma, is deaf and is a bilateral cochlear implant (CI) user and they have changed her life.

When Dr. House started working on CIs the medical community thought it couldn't be done, he suffered from harsh criticism from his peers and was encouraged to abandon his work.  Still, he persisted and succeeded when the FDA approved the first CI in November 1984.  Sometimes I wonder what our life would be like if Emma couldn't hear.  I know it would be drastically different than it is today.

When Emma first started using her CIs, while her brain was trying to make sense of the sound input, the first major change we saw was how she started to really move her head around.  If you can't her what is behind you or in the other room or what is going on off to the side and CP makes it hard to lift - let alone move - your head there would be little reason to move it around.  Once Emma could hear she started looking around her more, curious as to what was going on, and we noticed a significant improvement in her head control.  We knew CIs would give her access to sound, but didn't realize that it would have such a positive impact on her physically and were overjoyed that it did.

Unable to use sign language due to her severe cerebral palsy (CP), communication options would be very limited if Emma couldn't hear with her CIs.  In her early days we took classes in ASL, formed relationships with Deaf individuals, watched all the Signing Times vidoes and did a lot of signing with Emma.  She was one year old before she received her first implant and it was important to us to give her access to language during that time. We also wanted her to know some ASL in case her implants didn't work well.  Outside of her own version of all done, though, her CP makes it very hard to imitate signs so we eventually phased out the signs in favor of more oral language as her use of her CIs improved.

Today, Emma lives in an oral world where understands everything people say to her thanks to her CIs.  She talks through an eye gaze augmentative communication system since her CP makes it very difficult for her to speak.  Her CI's made this possible.

We are forever indebted to you, Dr. House, and are thankful that you went on to prove all those who said it couldn't be done wrong.


You can read Dr. House's obituary here.

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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

Tuesday, December 11, 2012

Kindness Bombs



This is the third December full of mucus. I’ve probably had many more winter months full of snot, but the last three have been particularly distressing.  I don’t like mucus; I have a very strong gag reflex.   This time last year, Sylvie had just returned home from the hospital from what would be a long and tedious struggle with a chronic upper respiratory infection all winter.  This year we’re prepared with two suction machines and an oxygen tank, which we’ve unfortunately been using with great gusto. Sylvie’s papa is a saint; he painstakingly administers Sylvie’s liquids by mouth one 10ml syringe at a time.  She no longer sucks on a bottle, and even though her doctor would prefer Sylvie was using a g-tube, we continue to feed her orally.  She’s had enough energy to smile at us in the morning, and she still enjoys bath time at night with her sister.  I’m not the praying type per se, but I have been going to bed each night, as I listen to Sylvie’s labored breathing, hoping I wake up to see her smiling one more day. 

I haven’t read Anne Lamott’s Help Thanks Wow yet, although I’m following her various speaking engagements around the country to promote her new book.  Yesterday she posted her own favorite passage:

Love falls to earth, rises from the ground, pools around the afflicted.  Love pulls people back to their feet.  Bodies and souls are fed.  Bones and lives heal.  New blades of grass grow from charred soil.  The sun rises. 

It seemed an appropriate passage to meditate on after Sylvie’s pediatrician and case manager came to the house for a home visit early yesterday morning.  It was just like in the olden days, when docs made house calls for the elderly and sick.  We talked about hospice and contemplated Sylvie’s ongoing palliative care needs. Sylvie giggled when she had three stethoscopes placed upon her chest, nestled in her big comfy bed in her own room in our own humble house.  It’s a much better place to be than in a hospital bed connected to IV drips.  Bodies and souls are fed when they are in a place that feels like home.

Last year when Sylvie got home from her first extended hospital stay, a secret Santa arrived at our door.  We never found out who the man was, or for whom he was delivering presents. The delivery happened so fast—and the man disappeared before explaining—it took us a few minutes before we realized we were just blasted with kindness.  That small act of compassion pulled me back on my feet.  Each December for the last 4 years, I’ve hoped for Sylvie’s twin sister that Sylvie will live at least until January.  Just get us through the Christmas with some semblance of peace and goodwill to all.  Just get us through the New Year. Just get to the girls’ next birthday.  And then BAM!  we make it through another year.  And the sun rises. And we continue to be bombed with kindness.  Thanks!

When Kirsten isn’t grading final exams and  papers as a professor of Communication Studies at the State University of New York, she bakes holiday cookies with her 6-year old (soon to be 7) twin girls.

Another Bump in the Road

The road to adoption is often paved with potholes.  Just when you think the ride is getting smoother you hit another one.

It started out when I was pulling out Cary's book.  I keep a 3 ring binder with a calender for appointments, folders for information, notebooks, and various needed items.  I was going through reports hoping to weed out and finally pitch some stuff when a few random sentences on Cary's original paperwork caught my eye.

The infant was screened for hearing.  Results were inconclusive.  Recommended follow up on this is advised.    

Say what???  Come on now, she hears just fine.  She is blind.  She absolutely can't be deaf.  Can she?  So I immediately got on the phone with her social worker and started gunning out questions.  It seems that Cary failed her newborn hearing test.  She was supposed to go in with her previous foster mom but true to form foster mom did not take her to her appointment.  For those that don't read my other blog, the foster mom from May-September has not taken her to over 12 necessary medical appointments.  The social worker also likes to say that it is "no big deal".  But I fell into that trap once about her diabetes and will not be stupid enough to do it again, thank you very much.

So I started making calls.  The place where she was supposed to go was rather peeved.  Even if I am her new mom the old guardians didn't show up so they were not going to make it easy on me at all.  So after going round and round I did what any mature adult would do.  I hung up on them.  Then I sat down and threw a pity party.  After a few sniffs and tears I decided that I would get her hearing tested elsewhere.  I called up the Virginia School for the Deaf and Blind.  A wonderful woman took my call, answered my questions, and we go on Friday for hearing testing.  I am super excited!  If I could cherry pick anyplace to send Cary this is the school. Getting her in for hearing is getting my foot in the door for much needed vision services.

So we hit a pothole.  But we survived.  Cary CAN hear, but her hearing may be a bit fuzzy.  These tests will help us determine that.  Cary is a strong resilient child and even with so many missed appointments is gaining ground daily.  If she can do it so can I!


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Amy Fields is a stay at home mom who is slowly transforming her house into a Montessori classroom so she can educate her two special needs children.  You can follow her at Many Kinds of Families.





Sunday, December 9, 2012

Fa-la-la-la-la

We managed to light candles, play dreidle, buy and decorate a tree, and go to a birthday party this weekend.

On the one hand, our way of doing these things probably did not resemble the majority of other people in the general population's ways. There were shouts of frustration and melt downs and dramas, time crept along slowly in spurts and there was plenty of mess.

And yet it was our most successful holiday weekend as a family. Who knows, maybe by 2015 or 16 we will find a groove.

I think I'm going to need some eggnog, but I am determined to keep trying my best to remain a hopeful parent in 2013.


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Rooster's Mom blogs at roostercalls.blogspot.com 

Wednesday, December 5, 2012

Eeek, it's holiday time....



Nick is at school; our special little place that was created for a small number of children who don't fit into mainstream schooling. They break up this Friday and we are in for a long lazy summer. Not so long ago, the prospect of having a long holiday without any respite filled me with dread. I really and truly disliked holidays.

My son doesn't play with toys, ride a bike or use a skateboard. He has no interest in lego, cars or ball play. He is unable to write, let alone draw. He will not take himself off to the swing or trampoline. My son is severely autistic with extremely narrow interests. As with most kids, he loves screen time.... but, in my heart of hearts I don't feel good about allowing him to spend all of his waking hours during the next six weeks, stimming on the computer, iPad, TV or stereo. 


Just reading the above paragraph makes me feel a little nervous. Am I going to be able to get through the summer until next term starts?


I have been thinking to myself that I need to make a plan... or two! 


I am so thankful for my dogs as they will give us an excuse to get out of the house every day. My boy is also becoming more interested in them and has started to be the 'ball thrower'... 


We have a pool so I will just have to get over my angst at exposing my wibbly wobbly bits squished into a costume. Nick is unable to swim (just can't get that co-ordination right!), however, I really need to spend some time with him and help guide him to be comfortable in a large expanse of water.


Oh yes, no doubt I can find an excuse to go shopping for some essentials. Gone are the days that I couldn't take Nick anywhere, therefore grocery shopping will be a breeze for us!


Nearly forgot my need for a daily cappuccino! Another opportunity to get out and about....


I also need to put some thought into the daily chores, cooking and all that other stuff that needs to be done around the house and in the garden. Woohoo, Nick is going to be a busy boy!!


Phew, I am exhausted already! 


Hey, Nick.... how about a little bit of *me time*? Screen time anyone?

I remain hopeful that we will have a happy and productive holiday. 





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Di is the mum of a two amazing teenagers, although she is only allowed to blog about the youngest one!! You can find her over at Bright Side of Life.


Saturday, December 1, 2012

Gratitude




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For those of you familiar with our journey, you know that after my child’s transplant I thought we were home-free.  Although I didn’t expect 7 hospitalizations since then (hence skipping some monthly columns), I’m still grateful. 

Doctors have literally saved my daughter’s life on multiple occasions.  I’m thankful that there are not one but two local hospitals in addition to the children’s hospital we use.  We went to all three within 2 weeks.  Families need to have backup plans.  When we had an emergency, we went to the one 5 minutes away.  When my daughter was in pain and we were concerned it could become an emergency, we went to the one a few minutes further out since they were a satellite of the children’s hospital.  When we knew we had time, we drove the 1 ½ hrs. (sometimes 2 ½ if traffic) to her “regular” hospital. 

In keeping your child safe, families should know that if they don’t think they can make it to the usual doctors, other local hospitals can stabilize your child then transport to the regular hospital your child uses.  We had 2 ambulance rides this past month but it was safer than trying to bring her ourselves.   

Now that this has happened (twice), I’m trying to set up something where the local hospital can consult with the children’s hospital so she can stay local if possible (also much easier for us physically and financially to stay home instead of staying out of state and for family/friends to visit).  You need to check with your current doctors to make sure they can consult with whichever local hospital (again, ours is a satellite so easier).  Then set it up locally.  I checked to see which hospitals/specialists were recommended (see resources) and found that they did have in-patient privileges at the hospital.  I also gave those names to my daughter’s “regular” doctors. 

Another thing that happened as a fluke was I called my daughter’s pediatrician just to tell him she was hospitalized (again) and as he has privileges at the local hospital he offered to facilitate a discussion between the local hospital specialists as well as pediatrics to ease transition.  Although the pediatrician is really her “primary care physician” who knows all her medical care overall, I hadn’t realized I could ask for help in the hospital collaboration. 

Lastly, I’m grateful for the little things.  Although my child doesn’t have much energy or strength, I don’t want her just watching TV, iPad, videogames all day - I want to spend more time with her.  Even if we can’t take our around the block walks, we can go to the corner & back.  It’s a start.  We can read together.  We can do puzzles.  We can have word search races. We can listen to music or if she’s up to it play instruments.  We can make holiday wish lists and shop online.   And yes we can play on the iPad as long as it’s a 2 person game.   

When she came home, she was falling asleep at 7 p.m.  The past few days she’s been getting closer to her regular 10p.m. bedtime.  But even if it’s later or the middle of the night, I no longer get annoyed if she’s keeping me awake talking loudly, shouting Pokemon attacks, laughing, or singing on the other side of the wall when I’m trying to sleep.  After all, she’s still here. 

Remain hopeful,
Lauren

Resources:


Top Doctors http://health.usnews.com/top-doctors/specialist-index  (see pediatrics by specialty) 

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.  She also serves as NJ Caregiver Community Action Network representative supporting caregivers across the lifespan for National Family Caregivers Association in a volunteer capacity at www.thefamilycaregiver.org.


Wednesday, November 28, 2012

Special Needs Battle Fatigue

As a parent of a child diagnosed with Prader Willi Syndrome, there are times in my life when the medical complexity of this diagnosis, begins to take its toll on me.

This month has been one of them.

After being diagnosed and treated for strep throat, my son, Nicholas developed a severely swollen left lymph node. Our pediatrician, an ER doctor and our Ear/Nose and Throat Specialist, all suggested that Nicholas may have a branchial cyst or malformation of the lymph node. With so many astute physicians in agreement, it seemed like a medical certainty.

In response to this possible diagnosis, we scheduled an MRI. Nick's anxiety issues required that he be sedated during the procedure. We were asked to come into Boston early for our appointment, only to discover that the MRI staff was many hours behind schedule.

It was a long and torturous experience for our entire family.

When it was over, we waited for almost a week before hearing back from the ENT.

Results of the exam showed that Nicholas did not have a cyst or malformation.

While we were very thankful to hear the happy news; the emotional and physical stress of the event made us feel overwhelmingly vulnerable and fatigued.

These feelings are a healthy response to a stressful situation. But when you are the parent of a child who is medically complex, these difficult medical scenarios can begin to accumulate one after another and pretty soon it becomes difficult to transition the soul back to that quiet, peaceful, and healthy emotional state.

Last week, I had trouble relaxing. I wondered why this was happening since I should be happy that there was nothing wrong with Nicholas.

I thought back to all the events of this past year and rewound in my mind, the enormity of my load.

Nicholas and I have met with specialists in endocrinology, neurology, psychiatry, gastroenterology, nutrition, ENT, opthamology, orthodontists, two neuropsychologists, an orthopedist, PT,OT and ST outside specialist evaluations not to mention his regular visits with his dentist and pediatrician. He has been fitted for a back brace, foot orthodics, braces and glasses. He has had x-rays, EEG's and an MRI not to mention several visits to the ER and an overnight stay in the hospital. There were several IEP's, a hearing and negotiations to transfer Nicholas to a new school.

While all of this running around took a physical toll on my body, there was a much more debilitating consequence. I experienced a type of emotional bleeding that occurs when a parent truly understands and accepts their child's medical fragility and vulnerability. It is a sobering awareness, an in-your-face understanding of a harsh and unthinkable reality.

In response to all of this, a booming voice of doubt inside my head hollers into my soul, questioning whether I have the strength to survive this grueling pace and emotional trauma that accompanies such a life. It is a silent and paralyzing fear that secretly gnaws at my subconscious.

I am not complaining or seeking sympathy. I am painfully aware that our situation could be much worse. I realize there are families who suffer from far greater challenges.

I am thankful every day for our good fortune.

I am also however, only human, and unable at times, to overcome this feeling of helplessness.

I believe I am suffering from a type of Special Needs Battle Fatigue.

Much like a soldier who is no longer able to withstand the sight and sounds of continuous battle, I too am experiencing a type of involuntary paralysis of sorts, a shutting down of the nervous system in response to the constant demand on the fight or flight response.

I am experiencing things like: headaches, fatigue, edginess, difficulty concentrating, a lack of tolerance for noise and confusion, emotional numbness, bad dreams, strong feelings of guilt, depression and worry, angry outbursts, difficulty sleeping, and a loss of interest in things that were once enjoyable.

I realize that by exposing myself to this constant heightened level of stress, my physical body may begin to rebel and become vulnerable to a variety of sicknesses or disease, which only serves to perpetuate the greatest of all my fears....the fear of leaving my son too soon.

But it is difficult to incorporate rest and relaxation into a lifestyle that is accustomed to caregiver chaos. Even when life settles down for me, still there is a secret soldier that lives just beneath the surface of my cheerful persona. A warrior, ever-ready and alert, instinctively programmed to pounce into action at the slightest hint of an emergency situation, an inevitable consequence of my child's many medical issues.

I have discovered there is a critical aspect of special needs parenting that I am neglecting.

My mental health.

I need to develop a plan that seeks to address this issue.

I need to help myself.

When Nicholas was first diagnosed with PWS, the initial stress of this devastating diagnosis and the accompanying lengthy list of specialist appointments caused me to experience a similar period of darkness. I named this depressive period.....the Prader Willi Blues or PWB's. It was, I believe, a form of Post Traumatic Stress.

In order to preserve my soul and continue to care for my suffering child, I developed a list of helpful strategies to help combat the PWB's.

Now, 10 years later, I am finding the need to revisit some of these same therapies and perhaps employ them on a more regular basis.

This is my Sanity Saving List, an ever changing record of helpful tools that help to preserve my emotional strength. When the fatigue of performing in the medical arena begins to wear me down, I try to implement one or all of the following strategies.



1) Hire a Babysitter: This is important to finding some alone time for myself, a time to do the things that I enjoy, alone and uninterrupted. (Time hiding locked in the bathroom does not count)

2) Alone Time with Hubby: An important time to reconnect with my husband and remember what brought us together in the first place.

3) Let House Work Slide or Hire a Helper: The pressure and time involved in keeping a clean house is a thief of time and can interrupt those precious few moments needed for rest and relaxation.

4) Cancel Appointments: Nicholas visits with so many specialists, I could literally spend all of our time just visiting with them. When times get tough, I try to take an entire month off from any specialists and non emergency visits.

5) Listen to Music: This is a new one that I have discovered. Locking myself in my bedroom with the door closed and an ipod filled with my favorite music has done wonders for calming my spirit.

6) Meditate: This is also a new one for me. I have found that purchasing a few good meditation cd's is a helpful tool. It took a while to find the right cd's that resonated with me. Meditation is alot like homework, it was difficult at first for me to make it a routine, but when I did, I noticed an improvement in my mood.

7) Nature Walks: I learned this one from my son, Weston. Long walks outside amidst mother nature is another winner for relieving tension.

8) Talking: I find it very cathartic to talk about how I am feeling with others. It is when I repress my thoughts and feelings that I notice a darker side to my disposition. However, there is a huge warning here. I must be very selective in my choice with whom to speak, for some individuals are not instinctively designed to handle such a heavy load, speaking with these individuals can actually make my pain worse. I try to speak with only those who are thoughtful and willing to listen with a sense of kindness, compassion and void of any judgement.

9) Therapist: Early intervention services in our state included the services of a family therapist. I am continuing with this incredibly helpful intervention.

10) Mini Vacations: I try to plan several mini family vacations throughout the year. Looking forward to time away from the rat race has worked wonders for us all, especially Nicholas who loves new adventures. A few days away works wonders in creating a restful diversion.

11) Write, Write, Write: Even if I do not share these thoughts with others, the process of getting it out on paper (or computer screen) has been particularly cleansing to me.

12) Sleep, Rest and Relaxation: During times of increased stress, I try to sleep more. If I can't sleep, I try to just rest and listen to music.

13) Special Needs Groups and Individuals: No one understands me better than those who share my struggles. Reaching out to these groups or individuals can provide some interesting and effective solutions.

14) Positive Reflection: This, to me, is the most important. With every stressful event that has ever occurred while raising Nicholas, if I dig deep enough, I can always find an important lesson. So, when my mind wanders back to disturbing events of the past, I force my brain to explore a positive aspect that occurred because of that experience. I do not repress the event, since I believe it is important for the mind to rewind the experience and reflect upon it.

Implementing these strategies is painful. Maintaining them...even worse, feeling like a type of special needs homework, a dreaded but necessary evil. But by calming my spirit and accepting my child and his diagnosis, I am, in a way, helping myself to live a more happy and fulfilling life.

Ironically however, of all my life saving strategies, it is my son's soothing sage-like spirit that effortlessly balances my warrior woman energy, it is interesting to me that when I physically tire from the heavy load of caring for my son, it is he who comforts me most, and I wonder if perhaps this is no accident?


Would love to hear what helps all of you?
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Lisa Peters writes about the adventures of special needs and family life at her blog. Please come share our experiences at www.onalifelessperfect.blogspot.com. If you would like to learn more about Prader Willi Syndrome, or make a donation, please visit our PWSA USA National Organization at www.pwsausa.org. Thank you for reading.


Tuesday, November 27, 2012

Among Peers

Katie is 8, and in a typical 3rd grade classroom. She has a 1:1 aide (and spends almost half of every day outside of the classroom, for various reasons), but is in what the school believes to be the" least restrictive environment".

Mainstreaming is all the rage.

Although, to be honest, I am not so sure I share that view.

Katie has made progress, sure. She doesn't hit the other kids anymore. She attempts to involve herself, and does have the desire for friends and social interaction.

But, at the end of the day, trying to fit in with typical 3rd grade girls is hard. Really, really hard. I don't get to see her at school, but I do get to see her at Brownies (she was able to join a troop this year, after being on a waiting list since kindergarten. Who knew?).

And sometimes, it breaks my heart.

The looks from other girls. The way she desperately attempts to join in, but sometimes her anxiety takes over and the behaviors come out. The subtle, and not so subtle ways, she is different.

How it is work. Trying to fit in. Trying to make friends.

It's work.

Recently, Katie met a little girl her age through a special needs dance class. They hit it off. She loves this little girl. She asks when she can see her (something she never does with other kids).

When Katie had a hard time during the last day of dance, when parents were invited in to watch, her friend didn't give her a look. She just called her name, and kept asking her to come back. Not phased by K's behavior. Accepting her. Loving her. Because there would never be another choice.

They can truly engage with one another, being just who they are, and it is a beautiful thing.

I wish it could always be like that. These are her peers. She connects with them. She has real relationships with them. While we are pushing her to mainstream, to conform, we fail to realize there is already a place for her. A place she belongs. Where she can grow, and be loved, and be happy. With children who get her. Those are her peers.

I know for some, mainstreaming is the goal, but I would be perfectly happy if Katie was able to spend her days with other children like her new friend. That seems like the least restrictive environment to me.

And the happiest.

I have always said, I don't want or need a typical child, just a happy one That is what I am fighting for.



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Jen (who apologizes for her late post this month) is a SAHM to Katie, 8, and Ben, 6. She lives in small town New England with her husband, kids, and too many pets. She spends her days trying to hold on to her sanity, and plotting her escape to a warmer climate ;) You can find her on Twitter @JenTroester, and she blogs at I Am Still Looking Up. 

Sunday, November 25, 2012

Hearing the Music

Nothing can shoot primal fear into the soul a parent like me as a mental health med change in our teenage son can. Nothing.

We're in the middle of one right now. Well, that's not exactly true, because we've been working on something since July. Changing meds that can propel your kid into anxiety that pulls so strong against living well is excruciating to watch close up. But you do it because of the potential benefits. Those potential benefits speak to us, drawing us in because we have to try.

It goes a little like this:

A little less of that, no more this, back on that a little, then more, then on that and less of this one. Again. Repeat.

We've been in this dance for a long time. Nearly three year ago we signed our son over to a (mental) hospital to keep him safe. Luckily we've not faced a huge number of med changes for him - maybe 8-10 - and only a few that have been significant. Significant being a change required because something was making his day harder, not easier. If his depression, anxiety or impulsiveness got in the way of engaging in life then we consider a med change with our doctor.

In our special needs world waiting for test results, or meds to work or to watch closely while a med can improve life or make it harder is a lot like playing an instrument. I've always believed it's like using that instrument to play a song and when you do play, you hear nothing.

Maybe you hear nothing for days, weeks, months. When you do finally hear the music, it is when you learn if the music makes any sense. Did you hit wrong notes? Just a small mistake and recover so the end result is okay? Or when you heard it, was the music unrecognizable, not music at all and something that was ugly?

When the music we play is unrecognizable, we know what's going to happen. We always do. We will play it again and again until we recognize the song. And the happy, engaged boy we know is in there.


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Julia Roberts is on Twitter at @juliaroberts1 blogs at Kidneys and Eyes, is co-founder of Support for Special Needs, and writes for Aiming Low. She's a lover of Diet Coke and naps. She'd love to start a petition to get that actor Julia Roberts' twitter handle. 

Tuesday, November 20, 2012

Thankfulness, As Experienced By a Special Needs Mom

The days are turning crisp here in the South.  Turkeys are beginning to thaw in refrigerators across our nation.  Our yards are covered with a crunchy coating of leaves that threatens to swallow the last bit of green whole, that is until Spring brings forth the abundance of sunshine and new life along with it's requisite coat of yellow pollen.

As I settle in under blankets and switch from sipping sweet tea - the table wine of the South - to hot tea, I am aware of a feeling that seemed absent from the holidays last year.  It was buried deep within the hollows of a heart that was still hurting from my boy's autism diagnosis six months prior.  It was covered with a heavy blanket of longing and regret that my boy was not anticipating the holidays with the glow of joy that I imagined and awaited after the birth of him, my first child.  It was overshadowed by regret over the things that would not be that holiday season - like watching him eat turkey, or delight in Santa, or rip through presents with anticipation.

What was buried within, and what has begun to escape this year, was thankfulness.

Perhaps it's complacency, but I feel more at peace with the holidays this year, even in what will be their modified state.  The things that would have given me sadness last year - like Jack being unable to partake in Thanksgiving dinner or not understanding the magic of Santa Claus - seems so normal to me now that I barely give it a second thought.  This is simply how my family operates these days, but I am thankful for that acceptance.  It makes it easier to enjoy the season to come.

I am also thankful for the blessings that I have with an autistic child.  Yes, there is much to be thankful for with being a special needs parent.  I am thankful for the plethora of therapists, teachers, and doctors who work with my little boy on a daily basis, who take my calls and emails on weekends, and who work tirelessly to help my boy achieve his milestones.  I am thankful for the wonderful network of fellow special needs parents that I have met in the past two years, for it is with them that I've found the best resources, the most kindness, and the greatest understanding.

Most of all, I am thankful for the lessons my son has taught me over the past two years.  As a result of his own sensory needs, he has made me infinitely more in-tuned to the world around me.  I see potential sensory triggers when I might have ignored them before.  I also see the beauty in the things that catch my son's eye, like bubbles floating on a breeze, the soft glow of a light-up toy, the gentle rhythm of a ceiling fan's endless spin, or the way that light can hit a table just so.  Imagine all that I would not see and experience in this world if not for my boy!  I am thankful for that opportunity.

I am thankful that my sweet boy has helped me appreciate the little milestones in life.  When he was an infant, I focused on the milestones that were listed in the books - walking, talking, crawling, etc.  When he met those milestones late - or did not meet them at all - I lived in a place oscillating between denial and despair.  Now, not only do I not worry about the milestones he has not met on time - which is nearly all of them - but I treasure the milestones that are missed by parents of typically-developing children.  I rejoice when my nearly 4-year old eats a meltable (cheese puffs!) for the first time.  I am elated when he produces just a few markings on a page with a crayon.  Each word out of his mouth is sweet music to my ears.  Each smile - and yes, even the flapping hands that often accompany it - simply lights up my life and I appreciate each and every one.

I am thankful that my boy has helped me find my strength.  My voice.  My courage.  Before he was diagnosed, I was content to sit silently and allow the world to pass me by.  I did not want to rock the boat.  Leave change to the other people.  Once my son was diagnosed and his needs were greater than I could have ever imagined, I found that I was not only willing but able to fight for the future of my little boy.  I began writing more.  I got involved.  I found that I did not fear action.  I wanted to become an instrument of change.

All of this because of one little boy.

This year, I am thankful for him.  For each and every moment he has presented to me that has helped shape who I am today.  I am thankful that I have the courage to approach the future with optimism, realism, and hope.  And I am thankful for all that is yet to come.

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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, like her on Facebook or follow her on Twitter!

Sunday, November 18, 2012

It's that time of the year... again

Lately I was not feeling much hopeful. To be honest, I'm still not on the level I usually am. That's the mayor reason why I had my mouth (and fingers) shut.

It's that time of year again. Time I absolutelly don't like at all. Hate would be the closest feeling I feel. The time between DST and Winter Solstice. This days slowly kill me.

I leave our home in the dark and I come home in the dark. Hell, feeling like I'm a vampire - going to the coffin (read my office) in the morning before sun comes up and returning to my family in the afternoon, when the nigh already falls.

Yesterday it was fine day. I saw the sun after - yup, it was more than a week... We have a huge oak tree standing near the house and I absolutelly adore it, but when the fall comes, the lawn is full of leaves.

So in the afternoon I took kids and we went outside to grab leaves from the lawn.  Was that good idea or not, I won't talk about it. 

When I almost finished grabbing I found a small daisy blossoming out of the grass.


The last before winter? Perhaps, but as already snowed 2 weeks ago, just didn't last long, this small flower reminded me...

That no matter how cold or dark or lost I might feel, I have the will to rise and survive. I have hope. 


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Petra is a Writer, Mum of Two, Wife to One, Full Time Employed Woman... Warrior for a better Future for her child with Autism and for the one without.  She blogs at The Way through the Circles of Hell