Welcome to the Land of the Lost

If you are the parent of a child with special needs, you are no doubt familiar with the essay “Welcome to Holland” by Emily Perl Kingsley. If not, click here to read it.

It is a beautiful piece that attempts to describe the experience of raising a child with special needs. It compares special needs parenting to the experience of preparing for a vacation in Italy, but instead, arriving in Holland. The author explains that although Holland is not the expected destination, it becomes a beautiful place to live nonetheless.

While I enjoyed the piece and found much comfort in reading it, my experience raising children diagnosed with special needs, feels somewhat more…intense.

My holiday excursion did not land me in Italy, or Holland, or Paris, France, for that matter. 

Nope, I ended up here.

I was abruptly transported to “The Land of the Lost”, a 1970’s well-loved television adventure series produced many years before the invention of special effects!

It is the story of Rick Marshall and his two children Will and Holly. During a routine expedition, they experience an earthquake of epic proportions that sends their tiny raft over a 1,000 ft waterfall and into an alternate universe filled with dangerous creatures and mysterious technology.

Like the Marshalls, I too am trying to find my way home.

Not because there is no beauty in this strange new land.

On the contrary, like Holland, the prehistoric environment is beautiful, the adventures exhilarating and interesting…..

But it is a land I don’t understand.

Often it is difficult to know what or whom to trust. And although I search and search, there are few inhabitants of this hostile new world who truly understand my predicament. It is difficult to create a sense of normalcy in this uncomfortable new setting. I struggle to understand the unique and sometimes dangerous environment.  Everyday life becomes a series of challenges, a sport designed to test my ability to manage chaos and save the lives of my children. And while it is indeed a wild and exhilarating experience…

I am just so darn tired of running away from dinosaurs and sleestaks all of the time.

- - - - - - - - - - - - - - - When not running from slow moving reptiles or a toothy T-Rex, Lisa Peters can be found writing about her special needs parenting adventures at www.onalifelessperfect.blogspot.com. Please come visit to learn more about our family life dealing with the exhilarating challenges of Prader Willi Syndrome and Aspergper's/ADHD. Thank you for reading. 

The Great Equalizer

Stress is the great equalizer, no?

Sure, all of our stresses are different. I'm not ashamed to tell you that secretly I think my stresses are more intense than most of the people in my life.

It makes the stresses of everyone else no less important, I just think mine come at me from every angle and feel like they might crush me sometimes.

Someone recently asked me how I handle the stress that never leaves. The financial and my kids' education and their well-being emotionally. What about their social issues, and their confidence? What about the spiritual life of our family. Our relationships with each other in our family and with me with my friends and the kids with me as a caregiver, advocate and regular mom.

I thought about that a while and realized I do have decent coping skills. I told my friend that I try not to get to high when times are good and likewise I don't get too low and depressed when things are bad. I've made a conscious choice to react (or not react) to high or low to situations because of something that happened nearly 6 years ago.

My son was deathly sick (barely) living on dialysis. We'd identified a kidney donor who came forward out of the blue for him and we waited 3 months for the go ahead. During that time there was a scare because the team was asking for more information from her, then her grandmother died and the funeral was to take place around the transplant day. We, of course, told her we would be fine with her canceling the transplant to attend the funeral but we were so, so sad.

We felt selfish. Scared. We didn't want her to cancel but we couldn't tell her not to, obviously. Ultimately she made the decision to keep the transplant as scheduled and it was wildly successful. Her surgeon said she had amazing atonamy to be donor and her kidney was "perfect."

Those few weeks as we were wondering what would happen we decided the highs and lows were swinging so far apart we realized we couldn't operate at the level long term. It was then we decided to hover in the middle somewhere.

We currently live hovering. Waiting for The Next Great Thing to happen in the favor of our kids, while knowing The Other Bad Thing could happen just as easily is how we currently operate in the world.

Waiting. Hoping.

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Julia Roberts blogs at Kidneys and Eyes, is co-founder of Support for Special Needs and is a lover of Diet Coke and naps.

Separate But Equal.....Maybe

Twins on the spectrum.  That makes up 2/3 of the children in my house.  A girl and a boy.  6 years old. Kindergarteners.  Same diagnosis.  VERY different children.

I remember growing up hearing the phrase "separate but equal".  This referred to Brown v. Topeka Board of Ed. Supreme Court Decision in the 1950s where it was determined that segregation of African Americans and Caucasians in school was not acceptable.  Everyone, regardless of race, gender, etc was entitled to the same educational experience (which expands beyond education).  This decision was ground-breaking and has changed the face of education, especially in areas where segregation was considered the norm.  But I find myself looking at my children and wondering if I am doing the same thing.

You see, Ballerina is in a General Education classroom.  It took a little while, but she is now thriving.  She has the support of an IEP and the school is behind her.  She has a shadow in the classroom to help keep her on task and she's now participating in group activities, making friends, even passing her reading tests.  At her birthday party last weekend, she was the "Belle of the Ball", welcoming everyone when they arrived and making sure everyone was having a good time.  It was absolutely amazing for this parent to witness.

Music Man, on the other hand, is in a Special Education classroom.  He is more isolated from the rest of the school.  He has a teacher and a paraeducator working with him full-time that couldn't be beat!  And he too has made some amazing progress, both that I'm hearing about from school and seeing at home.  For example, his ability to sit and listen to books in the evening has NEVER been better.  He attends to the story, participates when and if it's appropriate, and really seems to gleam pleasure out of the experience.  But his anxieties are getting stronger.  And as he grows, it's becoming harder to control his outbursts because he demonstrates fight-or-flight behavior.  He has most of his specials with the other kindergarten classes, eats lunch and recess with them as well, so he isn't fully isolated.  Yet, he isolates himself.  He has no desire to form friendships or relationships (except with his sister [and brother to a lesser degree], and that's only because THEY initiate).  His need to control every situation is absolute and he cannot handle someone telling him what to do.  Several of his behaviors seems to have improved.  For example, elopement was a problem earlier this school year and now he seems to understand that will not be tolerated.  Also, some of his toileting problems have also improved.  But my measurement of success for him is very different from hers.

We all have heard the expression, "If you know one person with Autism, you know one person with Autism."  For me, that statement is very true and leads to some very confusing consequences.  I need to look at them separately.  They are unique individuals with their own needs and specific issues that need to be addressed.  They each have their own IEPs that have very different goals.  And the truth is, they're NOT in the same program, even though they attend the same school.

But we're back to "Separate but Equal".  They are treated separately, each of their goals are given the same weight, but they're not the same.  I have to see them that way.  But I also have to make sure that I'm not short-changing one for the other.  I have to make sure that they both have the same opportunities for success.  I have to be sure that one is never short-changed in favor of the other.  And this is a skill I don't think I have ever mastered.  Many days, I'm not sure if it's even possible.

Separate But Equal.

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My name is Ilene and I am a Stay-At-Home Mom to 3 amazing children.  Big Brother is 7 and a typical second grader, in almost every possible way.  My twins just turned 6 (a week ago) and are both Autistic.  My daughter has also been diagnosed with an alphabet soup following ASD, and my son (although not officially diagnosed) also probably should have several more letters after his Autism diagnosis.

We live outside of Washington, DC and we manage to make it all work.  We have seen some HUGE improvements in both of the twins, and we've had our setbacks.  But first and foremost, they are 2 amazing 6 year olds who I wouldn't trade for anything in this world.

I blog regularly (when I'm not suffering from Writer's Block [which has been plaguing me for a month]) at My Family's Experience With Autism.

Some hope still shines from somewhere...

I'm not feeling the real me lately. Although the winter solstice came and it's gone... something holds me down. My spirit just doesn't lift as it should. I'm wondering what's going on, but cannot find the reason. This is the reason for my silence on the blogger for the past two months... 

But today I checked my blog again and found a post I would like to share it with you. 

http://foraoisdarach.blogspot.com/2012/10/nc-bat.html

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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 usually blogs at The Way through the Circles of Hell

Human Potential

I have always loved His Holiness the Dalai Lama. I even have a (large) framed picture of him in my kitchen. I have hung prayer flags across my porch, between trees, in windows, and in the back of my car. I have studied Buddhism and have a sister-in-law that is 100% Tibetan. Taking none of that away, I find myself a little pissed off with him right this minute.

I am re-reading his book, THE DALAI LAMA'S LITTLE BOOK OF WISDOM. I'm using it a part of a daily practice, just reading a few pages a day and trying to meditate on them. His wisdom and guidance is profound, and until a few days ago, I thought faultless. But here's what he said that got me, and granted, it's kind of a "thing" with me: "As humans, we all have the same human potential, unless there is some sort of retarded brain function. The wonderful human brain is the source of our strength and the source of the future, provided we utilize it in the right direction. If we use the brilliant human mind in the wrong way, it is really a disaster."

Could NOT agree more about that last part - try to think of a sinister person now, or in our history that isn't/wasn't brilliant. You'll be hard pressed. But to say that those with less brain function do not have the same human potential for our strength and our source of the future, is just plain wrong. I think I know what he means, and no question about it, we need the brilliant minds of the world to reach and strive for good, they will impact our future, for sure, but so too can those whose brain function is, well, let's go with "different."

The people I know who have a "different" brain function are the leaders of the world, they are pointing us where we all need to go. They get it on a level others don't. They are here for a reason and have much to teach. Their "potential" is not the problem, our view of it is the problem.

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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.

Thank You, Taylor Swift

My daughter has always reached milestones in her own time. When she was younger, things like speech and play were the focus. But, as she got older, it was the social milestones that seemed out of reach.

Last year, there were girls in K's class who wore Justin Bieber shirts. I told myself I was lucky to have a child who didn't know who Justin Bieber was, but it also made me a bit sad. She should like Justin Bieber. She should sit with her girlfriends at lunch talking about his latest song. Sure, there have been a few Katy Perry and Lady Gaga songs K has liked, but she's never latched on to either artist. Never talked about them. Never asked for the latest CD. She'd sing along in the car, but that's where it ended.

Sometimes the social milestones are the hardest ones to get over as a parent. Especially having a girl. There are times I wish K would ask to shop at Justice, or Abercrombie. Want the latest pair of shoes (that don't light up). Show interest in some of the same things as her peers. It's selfish to want that, but true nonetheless.

And then it happened.

K has recently taken an interest in Taylor Swift. Like, really taken an interest. She has asked me to put her songs on the iPod, and listens to them constantly. She has watched the Taylor Swift documentary on Netflix many, many times. Then, tonight in the car, she asked if we could go to a Taylor Swift concert, because she was her favorite singer.

She asked to see Taylor Swift in concert. Because she's her favorite singer. 

To me, that's a pretty big milestone.

Excuse me while I wallpaper K's room with all things Taylor Swift.

And start saving up for those tickets.



- - - - - - - - - - - - - - Jen is mom to K (HFA/Dyslexia) and B (boy). She lives with her husband, children, and too many animals, in small town New England. You can find her new blog (long story) at Yellow Mustard Mom, follow her on Twitter @YellowMustard19.

Conflicted

Lately I've been thinking a lot about a story I've heard at some point in my life.  It's a story about a person who is drowning in water and goes something like this:

• A boat comes over and the captain tells the person to hop in and the person says "No, thank you.  God will save me."  
• A second boat comes over and the captain tells the person to hop in and the person says "No, thank you.  God will save me."  
• A third boat comes over and the captain tells the person to hop in and the person says "No, thank you.  God will save me."  
• The person dies, meets God and asks "Why didn't you save me?"  To which God replies - "I sent three boats for you and you didn't get on any of them!"

As we start to prepare for the transition of our daughter from pre-school to kindergarten I find myself conflicted about where I want her to land.  Full inclusion?  Semi inclusion?  Separate school?  I find it hard to believe that I'm even thinking anything but full inclusion might benefit her, but my gut tells me that we should be open to the possibility of a separate school for a short period of time while she learns the basics of reading and communicating with her talker.  My open-mindedness comes as a result of meeting more than a few children in our area that have needs somewhat similar to my daughter and the stories I've heard from their families.  It's sort of like the 3 boats coming and giving us some great insight and I don't want to ignore their input like the story above.

The good news is that we don't have to figure this out alone.  There are a team of people in our school district that will come together to get to know my daughter better and present us with some options.  I've heard very positive things about our district and our experiences have been very positive overall for the pre-school program and expect it to continue as we transition to school age services, but we are not naive and will keep a healthy does of skepticism due to rumblings of school and special education services budget cuts.

My initial thought is to ask for an evaluation from the separate school that specializes in cerebral palsy.     Previous evaluations determined that she is mostly on target or ahead on some cognitive levels and very obviously behind on all physical levels, making it very hard for her team to get a good assessment.  This is one instance where I believe going to experts skilled at evaluating children with cerebral palsy will be a better choice than teachers and therapists filling out a cookie cutter evaluation and assessment process (such as a Carolina) that does not take into account my daughter's physical and hearing impairments.  I guess that is where I will ask the school district to start as we begin our conversation around kindergarten placement.

I find school placement decisions to be one of the most challenging parts of raising a child with multiple disabilities and I know I'm not alone.  Reaching out to other parents and learning from some of their experiences has been so helpful so far.  If anyone here has experience to share I'd love to hear them in the comments section.


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Kristina lives with her husband and two daughters.  Some days all it takes is getting the day of the week right to make her feel successful.  You can find her blogging at http://howlifehappens.blogspot.com/

Help-Thanks-Wow

My sweetie got me Anne Lamott’s new book for Christmas.  He knows me well; that happens after you’ve been living with the same person for 18 years. Lamott maintains that there are really three simple and essential meditations needed in our lives:  Help-Thanks-Wow. I’m not one to make or keep New Year’s resolutions, but I like this proposal of Lamott’s to ask for assistance, show gratitude and never be dulled to wonder.  These may not be prayers to a higher being, but as a hopeful parent (HA!), I’m going to try this exercise publicly:

HELP:

My daughter has a rare disease, and she is most likely going to die sooner than the rest of us.  This is my daily reality, and I’m pretty sure it scares the hell out of most people.  Sometimes I don’t feel as if I have many friends, and my family is far flung. The search for new Personal Care Assistants is a constant project.  I feel isolated--deeply isolated, and I can turn into a mean and angry depressive. I want someone to throw me a raucous pity party!  We’re making a trek to Pittsburgh’s Program forthe Study of Neurodevelopment in Rare Diseases this next week to see the one key specialist in the country for Sylvie’s disease.  Perhaps there will be no new information garnered from this visit, but it’s one attempt to reach out for assistance in dealing with my daughter’s medically fragile condition. HELP! 

THANKS:

Sylvie’s snot has subsided!  Rejoice!  For now, the suction machine is put away and she’s back to school to hang out with her peers.  Last month I wrote about the mystery Santa we had last year.  Well, more anonymous gifts appeared this year on our porch the day after Christmas—boxes of wrapped gifts for the entire family, including more coffee for my man. Apparently these gifts had fallen off Santa’s sled.  We received two unexpected monetary gifts in the mail from good friends and one of my far away cousins.  One of my mentors and new friends gave us a lovely gift certificate to a nice restaurant in town in hopes that my sweetie and I can go out on a date soon.  I live in a town and a state that not only adores but lives for large piles of snow, and the huge snowstorm we got earlier this month caused great exultation! THANKS!    

WOW:

My little girl was giggling so hard and loud last night at the dinner table that she made the rest of the family smile too.  She thought it was hilarious when we put a mirror to her face to show her how silly she looked in her papa’s winter elf hat. What music to hear that child laugh with clear lungs and bright eyes.  My beautiful twin girls turn seven in a couple of weeks and we’re planning a giant birthday party based on C.S. Lewis’ The Lion, the Witch and the Wardrobe classic. Narnia is a fantasy world of magic, dwarves, talking animals, an ice witch and Turkish delight, where children have great adventures.  In the last 3 weeks, our family has read six of the seven books of the Narnian Chronicles.  Hurray for great children’s literature and wild imaginations. WOW!

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When Kirsten isn’t preparing for her twin daughters’ Narnia themed 7-year old birthday, she is a professor of Communication Studies at the State University of New York.

I am One of You Forever

I am part of you.  Not in some creepy weird way, but through your posts on Hopeful and in your blogs.  I have laughed with you, cried with you, and felt your frustration when things didn't work out.  You have invited me into your homes and your lives.  I have been privileged and honored that you have shared your lives with me.

Normally I would love to post and share my life with you.  But today I would like you to know another Hopeful Parent.  She doesn't write on here, but like us her life has been touched and forever changed by her son's special needs.  Her name is Kristi Hart and she was an everyday mommy just like the rest of us.  She went to work and cared for her kids and just did the best she could.

But then tragedy struck.  Her little boy, Brian, became ill.  Very ill.  For six years our community has watched, prayed, raised funds, and loved this family.  Brian is a fighter and a hero.  But right now the fight is winding down.  The doctors have told Kristi that the legions on his brain have overtaken him and the deadly chemo cocktails are no longer working.  It is time to unplug the machines and let the little fighter rest.

So now I am asking for a favor. We are a community.  Just as I have walked beside you now it is time for us to walk beside Kristi.  The valley of the shadow is a lonely walk.  It is not good to walk alone.  Think about them this weekend, say a prayer for the family if you are inclined, if you would like to even go one step further and share some love she is on Facebook and you could leave her a message.  I know she would like that.

We can't change what happened to our children, but together we can support each other and draw strength from others when we need it.  Thank you for letting me be part of you and for being part of me as well.

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Amy Fields is a stay at home mommy and has two special needs adopted children.  You can follow her at her blog, Many Kinds of Families.

Me, Too

There was nothing out of (our) ordinary when my son approached two little girls, strangers on a play date at the park, and, standing too close and speaking loudly, announced to one of them, "Hi! I'm a wizard!"

What WAS a brand new experience?

When the girl matched him volume, enthusiasm, and sincerity, proclaiming, "So AM I! Actually, I am a dragon wizard!" She then went on to tell him her wizard name (longer than supercalifragilisticexpialidocious) and to correct his description of a crystal ball (which, she explained to him, should be called a crystal ORB). I was blown away.

Her friend seemed a bit discomfited as my son and his friend, the dragon wizard, shared their magic, and my husband and I stood by uselessly, in shock. My mind spun with pointless questions (Is she teasing him, or sincere? Is she on the spectrum too, or typical? Should I say something, or let this play out? Did he speak to her at random, or did he sense a kinship? Am I imagining this, or being punked? Did she really just match him wizard rant for wizard rant? Are people watching this? If I take their picture, will I get in trouble, or break the spell?)

We are working on arranging a play date at our castle.


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

Striving for balance and giving up chocolate!

I have never made a New Years resolution. Ever!

It hadn't even crossed my mind to think that the end of 2012 would be any different. 

Until.... 

A facebook friend happened to make the following comment;

 "Hi there, as we rapidly approach the New Year & although normally I'm not one for New Year's Resolutions, I've been thinking about the habits I would like to change that could help with our RDI programme & general family life? How about you?"

This stopped me in my tracks. Habits? Crikey, I have a lot of habits and not all of them good! 

Of late I have been feeling dissatisfied with a number of lifestyle choices. My weight gain has been depressing me AND I know it is all because of my chocolate addiction. My son Nick (asd) also has food issues that need addressing. As for my fitness level. Well, lets just say that I start puffing if I have to walk up two flights of stairs! 

I am very aware that the relationship I have with my husband and my other son is not as it should be. I have no one to blame except circumstances. Phew, having a special needs child/teenager really upsets the apple cart! 

The focus does tend to be on the more vulnerable member of our family. How can it not? As for him, what do I want for him and where can I see us going? He is actually progressing so nicely and I know that I want that to continue.

There is also the matter of having some *me time*. Okay, okay, we are on school holiday at the moment and *me time* is quite hard to squeeze in. What about the rest of the year?

Anyhow, after mulling over my options for 2013, I came up with the following four (short and sweet) goals.... don't want to go to overboard you know!

*  I want to start taking care of my own health and also lose the extra kg's that I have put on! 

*  Spend more quality time with my husband. 

*  My focus for Nick will be to continue being mindful about my parenting and to always bear in mind the *edge plus one* concept.

* Take the time to really listen to my first born and also guide him to be more independent!

It shouldn't be a problem trying to balance it all (cough, splutter, rolling of eyes!).

As for the chocolate, I will think about that habit tomorrow......


P.S. I have booked my *me time*. I am going to an Autism Conference in Ireland to listen to Temple Grandin. Woo-hoo, can't wait! :-)

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Di blogs about Autism and teenagers over at the Bright Side of Life. 

A new year resolution for a mother

DH and I are at the nutritionist for R

She is asking us to come back and see us 3 weeks from now.

I answer that it will probably be just DH and not both of us.

She arches a brow  "Going out of town?"

No, I am not

( I  resist the temptation to lie and say yes yes yes I am traveling.)

I hear judgement in her tone.

I remember our first appointment with her - when she said - that autism and heavy metals often go together

And when I say we were really careful with being organic etc - she says that then the metals probably come from my teeth fillings

A wave of that  old  familiar  guilt comes rushing back

As we  check out in the waiting room, I see 2 other mother waiting with the other kids

I tell DH cynically "I bet she never raises an eyebrow to the dads.. ........the dads can stay in the office .. the mums better not "

DH laughs and tells me not to be so sensitive. That she probably did not mean anything

That even if she did - who cares?

He is right on the second thing, of course-

Why do I care ?

And of course I know the answer to that -

I care because she is speaking directly to my inner voice that judges me

 DH is super supportive of me working and  a great SAHD.

And yet,  it takes little to stir that insidious voice of guilt that tells me I should do more and be more as a  mother

I am so much better than I used to be

At one point like many of my ilk  I would read everything I could get my hands on on what causes Autism and what I could have done to prevent it.

That obsession gave way to the relentless pursuit for finding the best  therapies

Always, I found ways to blame myself

Now when I look back, I wonder at the amount of importance I gave to my own role

How much I expected from myself!

 A friend says "expectations are disappointments in training"

And I disappointed myself all the time.

I think its all these cliches, I grew up with.

The glorifying of motherhood in Eastern culture

And then  in the West, the culture of autism motherhood that idolized the cure moms that wrote the cure books.

But R blossomed

And so did I

And I have started to watch how I think about myself

Our thinking is plastic - the more times  we walk down a path of thinking , the stronger it becomes

So this is my new year resolution

To create a more compassionate inner emotional world

“. You, yourself, as much as anybody in the entire universe, deserve your love and affection.” 
―Buddha



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Floortime Lite Mama  is the mother of a wonderful child with Autism. She blogs about Love, Life and Autism at Floortime Lite Mama