Wednesday, June 29, 2011

So Much For Groovy Grape

My eight year old "typical" son gives me a hard time about not liking the taste of the new toothpaste. It's grape, which is the only flavor he generally tolerates. I'd never dream of getting something as heinous as "mint" for him. Or berry. There'd be hell to pay.

I'm tired and I just want them to go to bed already.

"Seth, you dislike it, and that's fine but you're being kind of a baby about this. It's grape. You like grape. And even if you don't like this one, it's not going to kill you."

My daughter Riley who has been busy brushing her own teeth cringes as if I'd smacked Seth. She has Asperger's and is very sensitive.

"Mom," she squeaks, "Don't you think you're being a little mean to Seth?"

What must it be like to have skin so very thin?

Just then, memories of my own childhood sail through my mind. And I think of all the children in the world who are truly suffering. And what little empathy I had for Seth's toothpaste plight flies out the window. I look her in the eye,  

"No Riley. Actually I don't."

Turning my glance to Seth I say firmly,

"Deal with it." 

They exchange glances, solidarity against Mommy Dearest.

And I marvel how tonight this is their biggest problem. What lucky, lucky kids.


Michelle O'Neil blogs about life at She just joined Twitter this week, and suddenly can't think of a thing to say. @FullSoulAhead. 



Tuesday, June 28, 2011

New Picture

I see a new picture.

It appears as a little boy

with a big-boy bed,

real boy underwear on long legs.


He is coming out of a lost place

this independent boy,


fully emerging.


I finally see

the years melt away

into a boy

I get to meet each morning,

again and again.


I made it past darkness,

and I know it can work.


I believed through faith,

and watched the healing unfold.


Weeks, minutes,

it all adds up.

Scheduled time reveals

and shares its growth.


Children emerge,

boys become boys.


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

Special Forces

I am the mother of a child diagnosed with special needs.

I am a soldier.

I train. I prepare. I fight. I sleep very little. I am mentally sharp and emotionally subdued. I am entrenched in a hellish whirlwind of a life that consists almost entirely of battle, hardship and stress.

I sit by hospital bedsides in intensive care units at Children’s Hospital. I thread feeding tubes and deliver medications through PICC lines. I perform medication trials. I diffuse violent rages. I consult with specialists. My battle gear is assembled with lightening speed, tools like gait trainers, Trip Trapp chairs, and walkers.  Precious spare time left to myself is used solely for rest and rejuvenation.

Despite this fate, like a true soldier, I carry on.

I am alert, my hearing fine-tuned as I listen for the sound of approaching danger. I can detect even the faintest sound of an oncoming attack, a soaring fever, an escalating behavior, a silent seizure.

Like a Green Beret, my quiet nature and seasoned gaze is intimidating to most. Few folks understand that an assertive attitude and a sharp mind and tongue are just the end result of the intense basic training each parent of a child with special needs endures. It is an elite hard-core immersion program that challenged my sanity and made me question every dream I ever held dear for my child.

Like a young Army Recruit needed immediately on the battlefield, my training was fast-tracked.  I was delivered too soon to the front lines where I found myself immersed in all-out war. I was drafted unwillingly into an insidious battle with an elusive attacker that threatened to hurt my child and rob him of a happy life. My biggest fear while fighting was that my inexperience in this arena would take me out too soon.  If so, who would protect my son and guarantee his peaceful and happy future?

I have become a special needs soldier.

And although I am surrounded by others, I often feel alone.

But you here are my sisters and brothers, bonded to me by fate instead of birth. And although we don’t share the same blood, we have shed much of it together on the battlefields, fighting these terrible beasts.

Since my son was born, I have been drawn to reading books about World War II Veterans. Perhaps it is because I, too, feel like a survivor of war. As I read these soldier's horrific experiences, I am struck by how much I can relate to their brutal tales. Like those men who stood together boldly on the front lines of the battlefields, I too feel a deep bond, a life long connection to my fellow special needs soldiers, a bond that forms from those who have shed much blood, sweat and tears together.

In most of the war stories I have read, the soldiers speak of terrible images they re-live over and over in their minds. I know of what they speak. Each time I read an e-mail of a new parent whose child has just been diagnosed, it is as if I am transported, once again, to the bedside of my infant son.

Flashbacks of images of wires and electrodes covering his head fill my dreams at night. Often, I reflect on my son’s birth and picture the yellow tube taped harshly to his face and the stark catheter inserted into his skull to fight off the infection of unknown origin. I still see his tiny body strapped into a Pavlik harness that looked like a medical straight jacket.

When these soldiers describe their experiences coming home from war, I am struck by the sudden realization that I can never go home. I will be fighting this war forever. Much like the Veterans from the Vietnam War, I feel like I fight in an endless war that nobody recognizes.

Where is my Silver Star, my Purple Heart for the many invisible battle scars my body bears? Where is my Medal of Honor, for so bravely battling the forces of oppression caused by the evil empires known as Prader Willi Syndrome, ADHD and Asperger’s Syndrome? Is there no recognition for selflessly exposing myself to the atrocities of parenting a child with special needs? It is a sacrifice no less honorable isn’t it?

I understand when parents here write about how they just can’t feel anymore. I too suffer from emotional paralysis. I believe the soldiers call it battle fatigue. And so I write. The painful emotions I burried for so long, come pouring from my body like blood from a battle wound. This exodus of words has helped me to purge out those toxic emotions, to try to see this journey, not as a war, but as a pilgrimage, a voyage of hope with my family, a peaceful pathway toward freedom for my child and myself.

When the constant stress of war begins to take its toll on me, I often become bitter and angry, impatient and intolerant. It is always my “disabled” child who saves me from the depths of this downward emotional spiral. For it is only when I watch my son relate to the world do I begin to feel that quiet peace return. It is his loving heart and his innocent spirit that proves to me, at least, that he is the “normal” one.  It is his innate ability simply to love and inspire others that calms the warrior spirit within me. It is only when I stop fighting, put down my weapon, and look around me, that I finally see all that is beautiful in this world. It is only then that I am able to share in my son’s spiritual quest. It is only then that I truly feel a sense of peace.

I do hope someday that the words shared here on this website will help awaken the world to the beauty of our children and the loving and important contributions they make each day to improving the lives of so many others in this world.

I am thankful to Hopeful Parents for giving me an opportunity to educate the world on the hardships and rewards of raising my children, so perhaps one day we parents could have a national holiday devoted to honoring our sacrifices, our accomplishments and our beautiful children

When I hear, the few, the proud, the brave, I think of all of you.


 To read more about our family journey, please visit us at:

Saturday, June 25, 2011

Building Friendships

Friendships for my kids haven't come so easy over the years. Their delays put them behind other kids so it's hard to connect and for my son, his mental health issues over the recent years has caused a lot of isolation for him and for all of us in the family.

Proper mental health treatment, stable health and more time because there is less mental/medical intervention needed is hopefully the right mix for the kids few potential friendships to grow. Their circle is small, just a couple of friends each. Expanding that, even with more time and effort, is difficult.

There is a lot of encouraging (on my part with my kids) to get them to reach out, there is a lot of management (me calling or emailing or dialing the phone) and there is still a good chance a friendship won't grow because my kids are behind their peers in development. We're inching forward though, however slowly.

The kids have invisable (to the bystander) disabilities. It is not until you are around them and other kids that you can see the differences, which makes for interesting conversations between me and other parents or with the other kids. I do a lot of, "Well, sweetie, we're all different. We all learn things at different times. We all have different talents!"

It's exhausting, it is. I'm trying to encourage friendships that look like they have some potential; like there is a natural fit between the kids.

I'm wondering how others are navigating this...pushing or letting nature takes it's course? Or a little bit of both?

Julia blogs her family's journey at Kidneys and Eyes and began a social networking site for special needs familieis called Support for Special

Thursday, June 23, 2011

Rest In Peace, Neighbor of Mine

He was a 1960’s neighbor – the kind of over-the-fence chats for 45 minutes instead of a wave from across the street. He watched over my family while I watched over him. From the window in one of my bedrooms I could see him sitting on his sun porch. When we happened to realize that the other was looking, we would both grin and wave.

When I first met him eleven years ago, his dear wife was stepping towards Alzheimer’s, and he was photographing every moment in his mind. They were both in their late 70’s and had been married since they were 17 years old. They were two hearts and two souls joined in the way the rest of us dream about.

On July 4th several years ago, he lost his other heart, and from that point on his smiles were few and far between. But, they were always there for me and my family.

He needed a little help, and I needed to help. Every time I sent a meal to him, he would return the empty dishes filled with candy for my children. I planted the flowers in his front garden, and he watered them religiously. Together we attended the funerals of other neighbors, and for a special treat, he loved to take my family to lunch at Red Lobster.

In recent years, I watched his health decline, but he stubbornly refused to give in to infirmity. He was hard-headed and constantly told me to stop helping him so much, but I knew he secretly enjoyed the attention and companionship. He remembered what life was like in the slower, quieter past. He remembered a time of neighbor helping neighbor. He possessed the gentleman gene, and although it was difficult for him to rely on others, he eventually realized the need.

Just four short weeks ago, he was diagnosed with brain cancer, an insipid beast that would send him to be with his wife sooner rather than later. The doctors told him there was no hope and that he had two weeks to two months into which to pack the rest of his life. The first week wasn’t too bad. The second got a little worse, and by the third and fourth, he just wanted to go. He was tired, sick, in pain, and feeling like a burden to everyone.

This morning, he got his wish. Mr. Ed Baldwin took his last drugged and pain-free breath at 6:55 am. He was reunited with his lovely wife, Dot, and I will miss him very, very much.

Wednesday, June 22, 2011

The Summer Prayer

Dear God, now I lay me down to “sleep”

On the eve of an event that makes me weep.


Tomorrow is my child’s last day of school;

As You know that’s not so cool

For any child who needs structure and routine—

Whether youngster or growing teen.


Guard me through the long summer days

And help me tolerate his unique ways.

Aide me through the noise and din

And help me when my patience wears thin.


Guide us through time-outs when he might pout,

And please never let the cable go out!

Please keep ER visits minimal and doctor wait-times brief

Or I will be overcome with stress and grief.


Please help my child experience some fun

While in his own world under the sun.

Teach me that it is ok

To let him have his own version of play.


Give me strength to appreciate each day anew

With grace and humor and a very strong coffee brew.

Help me dear Lord, since you’re a parent too

Watch over him is what I ask of you.


Please understand I’m doing my best…

And not see this as some kind of test.

My sincere prayer merely seeks

To last until summer session—in two LONG weeks.


So guide me God in Your gentle way…

And please, just once, could he sleep beyond the break of day?




(With love for my little guy...Mommy does need God's help honey.)

Tuesday, June 21, 2011


My eldest son, Jacob, played his first solo show last Friday.

My husband and I took the rest of the kids to hear him and we had a nice time, or as nice a time as any 40-something adults can have in a large crowd of teenagers. There is deep joy in watching our teens circulate among their peers. Abbie, my 15 1/2 year old daughter, ran into some boys she knew from school and spent the time flirting with them and bragging (oh-so-subtly) that the guy on stage was her brother. Spencer, my 14 year old stepson, hung out with some of Jacob's friends, eager to test his social prowess before he officially starts high school in August. Jacob took the stage and although he was visibly nervous, he performed wonderfully. The audience was caught up in the off-center humor with which everything Jacob creates is infused.

Of the hundreds of things that Carter's illness (bipolar with psychotic features, among other things) has robbed from us, one of the saddest is the tempering of joy. I try very, very hard to be in the present, but I'm rarely 100% successful. I couldn't help thinking that Carter will probably never enjoy the social successes that our other children have achieved. His heart is as generous as any of his siblings, but his illness too often covers his kindness. He wants to make friends, but his bizarre conversational tics and habits scare other children.

So I'm proud of Jacob. Wildly proud. Warm from my head to my toes proud.

But also sad.

Carter, in the past year or so, has become increasingly aware that he is different. Most of the time, he's caught up in his own concerns—the hallucinations, delusions, obsessions, anxieties, and compulsions that propel him through his life—but lately, in his more alert moments, he knows that most people don't struggle like he does.

That awareness tears him apart. It causes me to have a bizarre not-quite-wish that he was just a little sicker—sick enough not to understand what he doesn't (and likely won't ever) have: play dates and sleepovers, parties and performances, teams to join and extracurricular activities to enjoy. Friends that everyone can see and hear. Confidence, contentment, and fun.

As he gets older, we are less and less able to prevent his dawning awareness and the violent self-hatred that results from it. His siblings are so much older than him that he has, until recently, not compared himself to them. They were Big Kids who did Big Kid Things, vastly different from the things that he did. At 8 1/2, 6 1/2, and 5 years older than Carter, they were almost a different species. Lately, though, there are questions. "How old was Jacob when he had a sleepover the first time?" "How many friends did Abbie have when she was the same age as me?" "Was Spencer scared to go to school when he was in second grade?"

I always knew that Carter's innocence (about this one thing, at least; he's innocent about so little) wouldn't last forever. I knew that my basic explanations (Everyone has a hard time with some things, and this is what's hard for you.) wouldn't hold water for long. It's sort of like teaching my other kids about reproduction. At first, I gave vague descriptions of babies who grow in women's bellies like magic beanstalks, or some such. And at first they were satisfied. Eventually, though, I had to talk about eggs and sperm, and how one got in contact with the other.

That was a piece of cake compared to this, because as much as teaching my kids about sex was a little uncomfortable, it was a natural thing to be doing. I was explaining a normal part of life to kids who would one day experience it (much as I don't want to even consider that!). But Carter's illness is a perverse twisting. A wrongness. A misery-creating beast.

My husband and I talked long, long into the night last Friday, contemplating all that Carter suspects, knows, and fears. We discussed what to tell him, and how, and when. How do we help him understand the reality of his illness, while helping him remain hopeful? How do we teach him to let go of expectations that are tied to what everyone else does, and grasp at goals that are within his reach? Will he be relieved or devastated?

I don't know, and sometimes that's the hardest thing. I just don't know.

I'd shrug if I could stop imagining Carter's pain if I get it wrong.

Adrienne Jones lives in Albuquerque, New Mexico with her husband and children. She writes the blog No Points for Style.

Sunday, June 19, 2011

On Father's Day

To the man who:

  • wastes his days off on specialist appointments for the kids.  Because he knows I struggle to do it alone.
  • has finger-nose with Pudding (don't ask) and orca (likewise) with Cubby.  So that each kid has their own special daddy thing.
  • gives up nights out with friends and weekend sports for playgrounds and pools.  And never lets us know that he minds.
  • gets up in the night so that I can get some rest, even though he gets up at 5.30 for work.  Then brings me a cup of tea so that my day starts out well.
  • makes up new wrestling moves to give the kids the sensory input they need.  Then performs those moves on request, over and over, even at the end of a long day.
  • sees how special our kids are, and accepts them as they are.  But will do anything to help them overcome their challenges.
  • offers a cranky wife a supply of hugs, shoulder massages, and feet rubs.  And doesn't mind when they are demanded.
  • understands and indulges his kids' special interests.  Because he has them himself.
  • has seen every member of this family at their very worst.  And is still here, will always be here, even if he might have to live apart at some point.
  • gives us the world.  And helps us find our place in it.
  • admits that quoting movie and TV dialogue is a tad spectrummy.  But won't stop...and has me doing it now too.
  • looks good in blue.  And pink. 
  • acknowledges that ironing is man's work.  And makes sure Pudding and Cubby see him in action.
  • lets Pudding pick who puts her to bed, and accepts that it is never him.  But keeps asking until the day she changes her mind.
  • has become adept at finding hidden allergens in food.  And a whiz at making gluten-free, egg-free, and milk-free weekend breakfasts.
  • tells us he loves us every day.  And we never doubt it.

I couldn't imagine a better daddy for Pudding and Cubby.  Thank you for all that you do.

Thank you to all the fathers who are here for their children, no matter what. 

Thank you to those daddies who can't be with their kids today. 

Thank you to the daddies who have to be oceans apart, wishing they could be there for their children. 

Thank you to all the mamas who have to be both parents to their little ones. 

Thank you for doing it day in, day out.  You deserve so much more than just one day to be appreciated.

Happy Father's Day.


Spectrummy Mummy blogs daily about the adventures of Pudding and Cubby.  You can also find me on Facebook and Twitter.

Dads Are Awesome

I think that in the special needs world fathers tend be a bit underappreciated. 

A whole lot of emphasis is placed on moms and what angelic, selfless martyrs (ha!) we are, but I tend to hear very little gushing from well meaning people over how amazing my husband is for doing the exact same things I get wild praise from the non-special needs community for doing.  Things like, oh, feeding our kid and playing with him and stuff.  Honestly I'm not sure why I get accolades for doing the same thing I would be doing for any child I ended up parenting-- special needs or not-- but it seems to me that the credit I get for doing those things should at least be spread out a bit more equally.

Maybe it's just that fathers get a bad rap in general.  Or maybe it's that moms (though this is rapidly changing in modern society) tend to do more of the active parenting.  And sure, there are some bad eggs out there-- just like there are some not-so-great moms.  Apparently we have the better PR team, though.  At any rate, I'm going to take the time today to tell you why Jeremy is such a fantastic dad, and I'd be willing to bet that the vast majority of dads parenting kids like Connor are just as great! 

Well, almost as great, anyway.  Sorry ladies, but I did get the best one.

Anyway, from day one Jeremy's been able to put things in perspective for me.  When we first found out about Connor's medical conditions, I was devastated by the thought of all the things our child might not be able to do-- walk or talk, go to college, raise a family-- the list goes on.  Jeremy's response was "Well, as long as we can make him happy, everything will be okay."  He changed my whole viewpoint of the situation, and that's the philosophy we've lived by since then.  Who cares if Connor succeeds by society's standards?  There are more than enough highly intelligent, college educated people who are also really, really miserable walking around out there to prove that those things aren't what's important in life.  Rather than focusing on what he can't do, making sure that Connor lives as independent and fulfilling life as possible is now our goal, and Jeremy helps me keep that in focus.

Jer also helps me remember just how important it is to sometimes relax and just let Connor be a kid.  We have so many therapies, appointments, exercises, stretching techniques, etc. to cram into our day that sometimes it seems like even play time is actually play therapy.  Jeremy comes home from work, scoops our child up and roughhouses with him.  The first time Jer turned Connor upside down I was convinced the kid was going to break.  But you know what?  Not only did he not break, but Connor lovedit, just like pretty much every other toddler in the universe.  And Jeremy's taught me that it's a great idea to play games with Connor without worrying about what the little guy is learning from them.  

Jeremy changes diapers, cleans g-tube connections and administers medication.  He does dishes and laundry.  He's more than willing to watch Connor while I run errands or go out and have some alone time, and whenever we go to parties he has to parade Connor around to every single person there and show the little guy off, because he's that proud of his son.  When we go out to the zoo or the children's museum, nine times out of ten it's Jeremy pushing Connor's wheelchair.  He reads bedtime stories.  He sings lullabies.  He holds Connor's hand in the hospital. 

And he also holds mine.  There's absolutely no way that I would be able to manage Connor's care and juggle the physical and emotional repercussions of having a child with a life-limiting diagnosis without Jeremy's constant support and encouragement.  We have a partnership, and somehow it doesn't seem fair that I get most of the credit for parenting Connor when Jer does such an amazing job of being a dad.  I couldn't do it without him.

I'm pretty sure that while, okay, Jeremy is the best, he's not the only dad out there that's pretty fantastic.  So if you know a great dad out there-- any great dad, parent of a child with special needs or no-- I ask you to take a minute or two to tell them that you appreciate what they're doing.  And I think it would be pretty cool if us moms let them know that we appreciate them more than one day out of the year. 

Great job, dads.  You know who you are.






You can find Jess daily at her blog, Connor's Song.

Saturday, June 18, 2011


Before Rojo was in kindergarten he’d been to five preschools either as part of Early Intervention or my stabs at typical settings. Since that time, nine years, he’s been in exactly one. It’s fair to say he doesn’t remember the first five. It’s fair to say he’ll never forget this one.

Now he’s an eighth grade “graduate” – graduate being in quotes because he was “placed” in eighth grade, not “promoted.” There was a time when that detail would have swept me at the knees – my boy, not even a grade school graduate – but by the time that decision was made it had been settled in my heart and mind for a little while, anyway.

It’s funny, as recently as four years ago we met with the behavioral pediatrician and these words actually fell from my lips, “Do you think Rojo will be able to go to college?” The fact that he did not spit out his coffee and say, “WHERE have you been? Of COURSE he is not going to college,” is a testament to just how kind he is. Still, that’s where I was four years ago – still holding out a thin ray of hope that with enough support and accommodations, we could possibly make it work.

There is place for hope and a belief that anything is possible, and right next to that place, is a place for reality, acceptance, surrender, and with a magical combination of faith and support… peace.

Now Rojo will transition on to what I believe will be a wonderful four-year high school experience, pretty much tailor-made for him. When we began asking for what we wanted for him for high school; that was three years ago. Even then, what we were projecting by the time he got to ninth grade and what he actually needs; are two different things. The high school saw it even before we did. As we threw out words like “differentiated instruction,” they threw out words like “life skills.”

Essentially, Rojo will spend the next four years doing just that – acquiring life skills: cooking, laundry, grocery shopping, budgeting, riding the city busy, etc. Again, there was a time not very long ago (shockingly recently, actually), where that news would have been devastating. Now I’m jumping up and down and saying, “Thank you! Yes! That’s just what he needs! Thank you for providing it!”

When you stop and think about it, that’s what education is all about – acquiring the skills to do what we will eventually be doing in life. And let’s face it, the typing class I took in school was probably the #1 most helpful and applicable class I ever in my life took, to “train” me for what I do on a daily basis now – 30 years after “graduating.”

Do any of us truly “graduate?” Ever? Don’t we all just learn what we can, when we can, from whomever and wherever we can? 

Friday, June 17, 2011

to my dad, because ...


 Because you made me think big.

And then bigger.

Because you have never been afraid to cry.

And often do.

Because you laugh like you mean it - filling the room with real, true, infectious joy.

Because when I was terrified and tried to run away you said, "Tough sh-t, kiddo. Get back out there."

Because you damn-near burst with pride when I did.

Because you still say to me, "You are the most perfect thing I ever did."

Because you have always believed that children are the world's most precious resource.

Because you got me a card on my twenty-first birthday that said on its front, "At twenty-one, life just begins ..." and on the inside said, "... to suck."

Because you will not tolerate injustice.

Because you believe that everyone deserves a chance. 

Because you taught me that there is no woman more beautiful than one who is strong, smart, and self-assured.

Because you never wavered. 

Because you never stopped believing that anything is possible. 

Because you love your grandchildren with an eerily familiar mix of ferocity, tenderness, pride and sheer, unbridled joy.

Because I still call you when it all hits the fan. 

And when it doesn't. 

Because you read everything I write. 

Because you offer to send me money that you shouldn't. 

Because even though I won't let you, I know it's there if I need it. 

Because you give me birthday presents in March.

And then another on my birthday in August because, well, it was so long ago now.

Because you have never been afraid to fight for what is right.

Because you could have done anything - anything - with your life and you chose to be a middle school principal for forty-five years.

Because the children who passed through your school - so many with children of their own now - are better people because you did.

Because your custodian was offered the exact same respect as your school psychologist.

Because you gave cake to kids in detention - but made them promise not to do it again, whatever it might have been.

Because you were most touched by the children like mine. The ones who needed a little extra.

Or a lot.

Because you set the bar so high.

Because you told me again and again that the sun rose on one side of my head and set on the other.

Because you believed that it was every child's fundamental right to have parents who felt that way about them.

Because you always said, "You'll get it, Jessie. When you have babies of your own, you'll get it."

And I do. 


Because at forty years old, I am still no less your baby than you are my daddy.

And because I have no idea what I would do without you.


Happy Father's Day.

I love you so very much.




Jess can be found at Diary of a Mom where she writes about life with her husband Luau* and their beautiful daughters - ten- year-old Katie*, an utterly fabulous typically a-typical fourth grader, and eight- year-old, Brooke*, a loving, talented, hilarious second grader who has autism.

She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit 'Like' and probably now wonder what they got themselves into.


You're So Vain

It's all about me.

My posting date for Hopeful Parents has been hovering over me this week.  Most of the time, I’m ready for it.  I have a blog post in my head that I’ve been saving for this day, and I just sit down and write.

Today, I’m just not feeling it.  

School ended yesterday for one kid and ends today for my oldest.  I’m in that limbo world that happens between the end of the regular school year and the beginning of our extended school year summer program.  I thought I could write about that - the panic that sets in knowing that I’ll have all three boys home for two weeks with no set routine and no plans.  

So I could write about how I used to look forward to summer vacation time.  But now I look at it as a loss of “me time”.  Parenting is a 24 hour a day/7 days a week job.  Special needs parenting requires an extra hour and day that just doesn’t exist.  I used the time when my kids were in school to make all the phone calls and arrange all the appointments that keep my family going.  I used that time to shower.  To write.  To just sit in the quiet space of the house.  And now?  Gone until September.

Or I could write that this will be the summer of transitions for my kids and for me.  My oldest will be starting fourth grade, which brings a new set of challenges and demands on his time, and on mine.  My five year old is heading to kindergarten, in a new school with a new IEP team and a brand new teacher.  He’s leaving the place that took him in before his autism diagnosis, worked with us through his diagnosis, and showed us his strengths and not his weaknesses.  And my two year old?  He’ll be starting preschool in the fall for the first time.  His early intervention paperwork has already arrived at the school.  

Then maybe I thought I could write about the piece of paper that my oldest brought to me last week.  On it, he had written about 10 places he wanted to visit this summer as a family: Cape Cod, Fenway Park, the Freedom Trail in Boston, a beach in Florida, Legoland and Martha’s Vineyard.  And how I told him that I really wished we could, but it just wasn’t going to be possible.  I could write that he started to cry and asked why we couldn’t take vacations as a family like all his friends did.  And how my heart ached because I wanted to tell him that I felt the same way but that I‘m paralyzed by the fear of doing anything outside of our regular routine.  Instead, I told him I would take him to as many places as I could - just the two of us.  I wanted to tell him that it’s the sibling stuff that is the hardest part for me.  That I’m sorry for all the field days that I’ve missed, all the classroom volunteer activities that have gone to other parents, and all the homework that was finished unsupervised.  

I could write about any of those things.  But my head is just one big jumble right now.  There’s no coherent blog post that can come from that.  

So forgive me for not having a Hopeful Parents post here today.  I just don’t have it in me.  And right now, it has to be all about me.

"You're so vain
You probably think this song is about you
You're so vain

I'll bet you think this song is about you
Don't you? Don't you?
" - You’re So Vain by Carly Simon


Alysia Butler is a stay at home mom to three boys, one of whom has autism spectrum disorder.  When she's not wallowing in self-pity, she writes about her kids and other things at Try Defying Gravity and on twitter at @trydefyinggrav.

Thursday, June 16, 2011

To Pry Off a Cap

"The good we secure for ourselves is precarious and uncertain until it is secured for all of us and incorporated into our common life.” Jane Addams

Community supports for youth and adults with disabilities have been capped  (aka, frozen)  in my state.  This means that for kids leaving school now, there is no medical assistance, no professional care of any kind, no job supports, no supported community living options, etc.  This will mean the work, social and independence gains made in school will be allowed to recede in individuals with differences.  For many families this freeze will mean economic hardship and caregiver fatigue.  It may mean households where an income must be given up to care for their youth or adult with differences and thus, reduction or loss of private health insurance.  It means no supported work options for the adult with disabilities, little chance of a wage at all, much less a living wage.  That may mean the deterioration in health for both family caregivers and the individuals with differences.  For 4 in 10 surveyed, family members will no longer be able to care for their loved one with a disability in the home.  We know that will mean a resurgence of residential care – nursing homes, institutions, known once as sanatoriums or asylums. 

Yes, let that visual sit for a moment.

Nationally, Medicaid for any vulnerable citizen is under fire.  Our children are low hanging fruit, the first to have to give when times are tight.  They are turned into pack mules for the baggage of unbalanced budgets. Economic health is expected to return, even as we tear families apart and render caregivers and individuals with differences unable to contribute to the economy as either wage-earners or consumers.  Legislators look at the varied populations and determine people with disabilities to be least matched to the value of a dollar.


It is not easy to be a hopeful parent in these darkening times.  But it’s less easy to throw in the towel.  My almost 12 year old and I discussed today’s rally and how we’d design our visual messages to augment our simple presence.  Cate asked for the job of picking out a “powerful outfit” for her almost 8 year old sister with differences.  Both my daughters and I will stand with other families today in front of our legislator’s office.  We will stand and we will clarify the definition of citizenship.

Here is our sign (log in to HP to view it).  The photo and each word were chosen with deliberation, care and intent. 

With hope.

Wednesday, June 15, 2011

The Perils of Special Needs Blogging

At some point in the past four-plus years of my blogging, I decided to write as if everyone I knew were reading my blog. Now, I know this isn't the case (oh, if only it were), but I think it just makes good sense to not put anything online that I wouldn't say directly to someone's face.

This philosophy has served me well as more and more people that I know in real life have happened upon my blog. Just this past week, it became suddenly clear that a large chunk of the staff that I associate with at my kids' school are aware of my online persona.

I am so thankful that the staff at our school is openminded and supportive, but I am also thankful that I have put real thought into how I blog about my life. There are so many things to consider when you put your life—and your children's lives—online, but I think that there are some issues specific to those who write about their children with special needs.

I think there are several questions you should ask yourself when you are blogging about your family:

How much information will I share? Will I use my kids' real names or pseudonyms? Will I publish identifying information? Will I post photos of my children? Will I use my last name? Am I aware that even if I am very careful, someone who really wanted to show up on my doorstep tomorrow probably could?

In my case: real names; I try not to post identifying information; I'm all about the photos—they're the best parts of my posts; I use my maiden name, which I don't share with my children; and, yes, between IP addresses, domain registration, and information I've written about, you could probably find me with little difficulty (but let's not test that, m'kay?).

Who will my post offend? Now, this doesn't mean, "Don't write things that will offend people," but you should be cognizant of whether your words will upset people and you should be prepared to face the consequences. If you complain on your blog about how a teacher handled a situation at your school and that teacher reads it, there might be negative consequences—even if you are in the right.

If I write this, can my child still grow up to be president? I know it sounds absurd, but I am less concerned about embrassing my kids as teenagers and more concerned that what I write will be a discoverable record that will limit their choices in life. I figure the president litmus test is about as stringent as you can get. If I write about how my toddler wore a stuffed duck head hat for a year, will that stop him from being president? Probably not. If I write about how my teenager kills puppies for fun, will that stop him from being president? Quite possibly. (For the record, my kids have only done one of those things. Guess which one.)

Is my blog ever going to be used against me in court? This is a big one for special needs bloggers. I have a great relationship with my kids' school and don't envision having my personal blog dragged into an IEP meeting or a due process proceeding, but that doesn't mean that things won't change, either at this school or our next one. Life changes quickly and harshly. Things you write in jest now can be used against you in legal proceedings, such as a divorce or an adoption later.

Am I respecting the privacy of people who don't want to be written about or photographed? It's not my desicion to make to put someone's photograph on the internet. I blur, conceal, or crop all non-family people out of my photos, unless I have express permission to publish their image. I have also passed up on many extremely awesome blog posts because the story just wasn't mine to tell. This includes stories that heavily feature other students, teachers, or even relatives. I get to make the decisions about my children because I own them. (Oh, I'm kidding.)

Will this embarrass my child when he is older? Now, I'm going to assume here that my mere existence will probably embarrass my children when they are older, so I figure this is a fuzzy line, to say the least. But words live online forever and even though you can't Google one of my kids' names and come up with my blog, that doesn't mean that their friends won't find it. Special needs kids are already extra vulnerable to bullies and teasing; do I really want to give those bullies fodder with which to hurt my child? Of course not. Therefore, there are definitely topics that I am phasing out of my blogging. Sleeping in a box when you are six? Weird and kinda funny. Bed wetting as a teenager? Bully fodder. Choose your topics wisely.

Will my blog jeopardize my children's safety? Life is dangerous. I am hyper-vigilant about my kids' safety. I don't think I would be less vigilant about my kids' safety if I didn't write about them online. I don't know that I could be more vigilant unless I locked them in my house at all times. Are they more exposed because I blog about them? Absolutely. Are they more likely to be victimized? I don't think so. I could be wrong, but I hope not. Every person who writes about their children has to make this choice for themselves. I have considered this question carefully and have decided that the benefits outweigh the risks.

Well, what are those benefits? Honestly, there are a lot. I could give you a long list and still not cover every reason I am grateful for what blogging has given me. Among them are community, support, knowledge, advocacy and positive awareness, creative expression, and career exposure. Through my blogs and columns and the hard work I have put in to building an audience, I can help spread awareness and acceptance of autism to make the world a little bit better for my autistic son and his peers when they grow up. I am also giving my kids a history of their young lives. I wish I had a chronicle like this from my youth. I would love to be able to read about my parents' lives and how they were whole, complete people, and not just "that lady who brings me the dinner I refuse to eat." Furthermore, it is a love letter to my children. When they grow up and read it, they will see how much I not only loved them, but truly adored them for their quirks, their minds, their personalities, and their delightful whole beings. I think that is an important gift to pass on to a child.

So, have I always followed these rules? Probably not, but I try to. There are times that I have written without thinking. Of course it would be safer to never write publicly about yourself and your child, but there is so much positivity that can come out of online writing that the risks are worth it for me.

There are a lot of special needs bloggers who read Hopeful Parents. I'm curious to know how others deal with these issues and why the risks are—or aren't—worth it for them.

Stimey writes a personal blog at Stimeyland; an autism-events website for Montgomery County, Maryland, at AutMont; and a column called Autism Unexpected in the Washington Times Communities. You can find her on Twitter as @Stimey.

Tuesday, June 14, 2011

Putting Worry on the Back Burner

Two weeks ago, a friend of mine, someone I’ve known since our now four-year-olds were babies, gave birth to her second child. She was having a difficult pregnancy, and was diagnosed with HELLP, a condition that requires immediate delivery of the baby. She was 36 weeks along, so a C-section (already the planned delivery method) was performed.

Mom, however, did not recover well, and after a series of tests, she was diagnosed with lymphoma originating in the liver. Treatment started immediately, including chemotherapy and dialysis. I know many readers of Hopeful Parents have had the unfortunate experience of leaving their babies in the NICU after being released from the hospital. In this case, the healthy baby was released and mom had to stay. She’s expected to be allowed to go home in another week or so, but it is going to be a long road to recovery.

This past weekend was a rough one at my house. My four year old son Moe, who is autistic, was quite manic, and found new ways to get into trouble at every turn. I spent a lot of time saying things like “no climbing!” and “not for mouth!” We went to a birthday party for a two year old on Saturday, and I wanted so desperately to let Moe run and play with the rest of the kids. But keeping him out of the food buffet or from running behind the rose bushes along the perimeter of the yard was a full time job.

Our house looks like a toy factory exploded (and this is after I’ve removed many of them to the garage). The weekend was not made any easier by the fact that it was the start to Moe’s first week of summer break – the only week he doesn’t have any school and both my babysitters are out of town. I will have to take my two year old along to Moe’s therapies, which is challenging. I can’t take the kids to the park or even the mall by myself unless they are in the stroller. Needless to say, I am stressed.

But I also have perspective.

I am thankful that my legs allow me to take my kids for walks in the stroller.

I am thankful that I have two hands, perfect for holding on to each of my children.

I am thankful that I have a voice, even if I occasionally often have to use it to say the word no.

I am thankful that I am able to care for my children today.

Please do not misunderstand. I do not intend to compare one type of struggle to another. This same mom and I met for coffee a few months ago. We were talking about some of her older daughter’s challenging behaviors. She stopped herself, saying she shouldn’t complain when I have it so much worse. But it isn’t like that. I remember complaining to a different friend about something or other when Moe was small. This friend had had a few miscarriages and had not been able to have a child of her own. We all have our challenges in life.

Suffering is not a competition, and just because someone else is struggling doesn't mean your worries are any less real. Caring for a child with a developmental disability is incredibly stressful. But right now, a friend is fighting off cancer, and her young baby needs her back at home. So today, I am giving myself a break from worrying about my own future. Thankfully, my concerns can wait for another day.

Monday, June 13, 2011

Summertime, and the Living Is Easy

Summer vacation's about a week away for us. Boy, do I remember how I used to dread this part of the year. I so valued the routine of school, the way it occupied the time of kids who could not for the life of them occupy themselves at home. The end of the school year meant a transfer of expectation for time-filling to me, and as much as I loved spending time with my kiddos, oh my gosh, it was a lot of time to fill. 

These days, at ages 18 and 21, maybe the most joyous part of their development for me has been their ability to keep themselves busy. Terrible thing to say, maybe, but hoo boy, if you have a kid who requires your attention everysingleminute, perhaps you can sympathize with how blessed I feel. And maybe you'll forgive me for admitting that it's TV and computers and iPads and iPods that are doing the amusing.

I know, I know, they're supposed to be reading and hiking and having grand adventures and small personal revelations inspired by exposure to art and music and culture. Mm-hmm. I've tried to get my daughter to sample iBooks, but sadly, her hatred of reading spans all platforms. I like to think that the hours my son pores over creating playlists in iTunes has some cultural value. He's unbelievably eclectic in his tastes. I'll bet there aren't too many teenagers buying songs from Kanye West and Oscar the Grouch in the same 24 hours. I leave him to his work.

My kids have had summer jobs through a special-needs workforce training program in our area since each turned 14, so there's some skill-building and life-experience-gaining in six or so of their summer weeks. They earn some money to save and some to do with what they want, and that's the way I think of summer time, too -- some you should just get to waste, especially if you can do so without your mom having to figure out how to waste it for you.

Where once school was our place of refuge and structure and routine and predictability, I'm now kinda glad to see classes conclude, since that marks the end of nights spent on homework and mornings rising early and anxiety over whether we can make it through the whole year without a disaster. Ahhh, summer. Come September, my son will be a high-school senior and my daughter will be moving out of remedial college classes into harder work, but for now ... everybody find a screen!


Terri Mauro blogs at Parenting Special Needs and Parenting Isn't Pretty. She has two terrific kids, a 21-year-old with learning and language disabilities and an 18-year-old with FASD, both adopted from Russia in 1994.

Are You “Honest” ?

What is the definition of honesty? I looked it up and here are a couple of definitions that I found

“Fairness and straightforwardness of conduct"

“Adherence to the facts”

Honest communication can be extremely liberating and sometimes painful. I feel that honesty is often relative to the person telling the “truth”. I believe that the intent behind the message is what is most important. Of course good delivery and a receptive audience makes all the difference in the world! Many people genuinely do their best to tell the truth as they know it, but it still can be clouded by their own perceptions no matter how sincere their intentions.

How many people do you know who would insist that they are always honest but their conduct does not match up with what they say? If you don’t know anyone personally turn on the news and watch one of our various politicians involved in a scandal for an example. (Yes Congressman Weiner I am talking about you! unfortunately you are not alone.)

I also keep a special category for those I consider the “Creative Truth Tellers” this group does adhere to the facts but skews them in such a way that it is favorable to them.

Finally we come to one of the most brutal categories ~ “Honesty as a Weapon”

From the blog Life Ain’t For Sissies by Dr. Linda Edelstein

Years ago, marathon encounter groups were quite the fashion.  In the early 70′s, I attended one at the U. of Chicago where a group of strangers sat around and talked, vaguely led by someone. The group went on and on (that’s why they called it ‘marathon’) and the goal was to break down defenses and get people to be in touch with their feelings. Yes, I’m a psychologist and I do believe in feelings and emotions. I know that we learn a great deal from examining our internal lives but this exploration is usually done best in therapy or with a trusted companion rather than in a group of strangers with a half-baked leader. Anyway, back to the U of C marathon….

Some time after midnight, one woman in the group turned to another and said, “I want to be honest and tell you how I really feel about you,” and then she unloaded.  Somehow, this was supposed to be okay because it was “honest”.

I was young and pretty naïve but I knew that phrase, “I want to be honest” was trouble. I’ve heard it since and I haven’t changed my mind. I have seen honesty used as a cruel, aggressive weapon. When it is used in this way, the goal isn’t to benefit the receiver of the information; it serves to release the “honest” speaker of guilt and responsibility for aggressive and cruel words.

What do you think? Are you honest? What was your intention the last time you told the "truth"? I think these are important questions to ask ourselves before the next important "honest" conversation.

Sunday, June 12, 2011

So many changes

I'm not good at New Year's resolutions so I haven't made many the past few years.  This year, though, I felt the need to refocus my life a bit and decided that January was a great time to make a change.  At the end of last year I came across the idea of picking one word to focus on for the year instead of making a list of resolutions that are out the door before the chocolate from Valentine's day is in the stores (which seems to get earlier and earlier every year!).  I loved the idea of focusing on a word for the year because it seems so manageable.  My word for 2011 is Faith - a word that I think found me more than I found it.  

Daily life demands make it easy for me to lose focus of the truly important things in life, to get pulled off balance.  I find my one little word grounds me.  I've found focusing on Faith has empowered me - to try new things and to believe that all the changes we are undergoing this year will work out better than we can imagine.  Focusing on Faith has been refreshing.

Each month I am reminded that with faith and persistance, all things are possible.  So far this year I've witnessed my daughter Emma (3.5 years old) go from being completely immobile to commando crawling in a straight line, to commando crawling and turning around while crawling, crawling over and under pretty much everything in the house.  She has gone from needing full assistance to use her gait trainer to being able to use her gait trainer independently to go in a straight line.  I've witnessed my husband complete his first marathon and Julia (5.5 years old) start to read some words in her books.  As for me, I've managed to try my hand at some sewing and craft projeccts that turned out better than I expected.  

Our family will see a lot of changes in the next couple of months.  We will move, navigate a new early intervention system for Emma, Julia will start Kindergarten, we will have to find new doctors, make new friends, and learn a new area.  All this change is not for the faint of heart!  I sure am glad I chose Faith for 2011 because I'll be leaning heavier than ever on my Faith that everything will turn out better than expected.  Bring it on! 

Rearranging Expectations

I’m sure I’m not alone in feeling like my brain is always being pushed to perform and respond in ways that match my situation as a special needs parent. In my previous life, before becoming a mother, I was never someone with planning skills. Now I find myself mentally preparing for what may happen 10 steps ahead of any current moment. There isn’t much mental down time now, and thoughts are often strategic in nature, infused slightly with a bit of panic.

I usually think and plan through worst-case scenarios when we’re out in public. And if I’m being honest, this is why I tend to avoid public situations with my son. They’re very stressful the majority of the time.

This is obviously really lame, not just for me, but also for my little guy. I’ve set my expectations for his behavior so low, and consequently have really narrowed his world and made it hard for him to gain the experience to improve his behaviors.

With this in mind, I set out last weekend to take him to a birthday party. Of all things to do, this was the most dreaded of the bunch. Talk about perfect storm for a kid with sensory and behavioral issues! Since it was at a playground with room to run and things to climb, I felt like it just might be doable. I watched him run into the shelter house amidst all the kids and adults, the gifts, and especially the food, and my heart sank. How many people would he kick or hit? Would he start opening gifts? Would he stick his hand in the cake? And guess what he did? He stopped and looked around, smiled, and said hi to everyone. Yep.

I continued to watch him as he ran and played on the playground, waiting for the inevitable slap or kick to another child who came across his path. More smiles and hi’s ensued. I felt myself tear up and realized that he has had it in him all this time and just needed more opportunities to let it shine. Here was my boy at a birthday party, being better behaved than some of the typical kids. Unbelievable.

As you might expect, the newly bolstered confidence this gave me led to a week of adventures in public that might otherwise never have happened. Shopping trips, restaurants, a trip to the pool, and maybe this weekend a visit to the barbershop. Has everything gone as smoothly as the birthday party? Absolutely not. But what counts is that we got a taste of what success looks and feels like, and that was all we needed to decide that all the effort and anxiety are totally worth it just for another taste of that feeling. 

Saturday, June 11, 2011

Weeding Things Out

Each month that I put fingers to keyboard for my post, my brain is swamped with metaphors about my life with Sylvie.  Earlier this month, as I was planting seeds, I was nervous that if I planted something for Sylvie and it died, that somehow that would be an omen of her own fate.  The feeling gnawed at me as I planted some oak seedlings their grandfather had sent them and Sylvie’s seedling died almost as soon as I transplanted it.  Later, the little pots of marigolds from preschool that was my mother’s day gift swept off the porch in one of the spring gusts.  The seedlings quickly withering in the hot sun.  I’m not typically a suspicious person, but …….

We had a medical incident that still has me reeling.  I swear death was knocking on my family’s door, rapping on our windows, begging to come in.  I know my partner would probably disagree, but I really thought Sylvie was going to die two weeks ago.  Memorial Day weekend we took Sylvie into the Emergency Room due to labored breathing.  It was a calculated visit (in that we called the otolaryngologists the night before), justified by her strained and loud nasal snorts and inability to fully swallow.  Her condition seemed to worsen over the next few days, only to be capped with a necessary and candid but nevertheless difficult conversation with our pediatrician about palliative care.  Allergies, enlarged adenoids, low muscle tone, and maybe a croup-like virus to just plug up the works.  Yucky and scary!

And then we added steroids, Sylvie bounced back—almost immediately she regained her color and started smiling and giggling again.  Only 24 hours prior I was convinced we are at the end of my daughter’s life, and the next day I was giddy and jubilant that she was going to be around a little longer!  And we go back to our “normal” life with a few more medications.  I felt like a serious manic-depressive, with radical mood swings.  Is this a normal response to have when you watch your child struggle?  Maybe Sylvie isn’t a wilting pansy after all.  Maybe she more like a quiet perennial.  Or maybe I just need to keep planting, weeding, tending and praying that something good is going to grow out of this soil.


When Kirsten isn’t digging in the dirt or fretting over inflamed nasal passages, she works as a professor of Communication Studies at the State University of New York and is the mother of 5-year old twin girls.


Friday, June 10, 2011

I’m That Mom

We all know them.  Those slackers who are rude, inconsiderate and downright scattered.

I’m sad to admit, that most days, that's me.

I'm the one who doesn't return phone calls.  The one who's perpetually late and hopelessly unprepared.

You'll rarely get a thank you card from me, and I'm sorely lacking on other common courtesies like small talk and banter.

I'm the mom who's not at the school events.  I don't work in the classroom.  When I do commit to helping, I often back out at the last minute.

I'm consistently inconsistent when it comes to remembering birthdays, Christmas gifts and other things.  I'll offer a variety of excuses, most not coming near to the truth.

It's not my fault, really.  But I'm sure you've heard that before too.

I have the best of intentions, the most amazing plans.  But somehow, they never seem to come to fruition.  Most people don't understand why, but I have a feeling if anyone will get it, you will.

You see, I'm the mom of not one, but three kids with special needs.  I have a son with Asperger's Syndrome, a daughter with alphabet soup (ADHD, Bipolar, NVLD, Generalized Anxiety ) and a little guy who the jury's still out on.  I am also mom to a very neuro-typical, extremely dramatic, teenage girl.

On any given day, I can be seen combing through reports, making appointments or researching new interventions.  I'm checking schedules, updating token economies and cleaning up after the walking tornadoes that are my children.

My calendar is littered with color-coded therapy sessions and IEP meetings.  Incidentally, it rarely has room for silly things like exercise or outings with friends.

I'm not overly friendly and I don't smile half as much as I should.  I usually have that distracted, pensive look on my face as I try to mentally calculate how we will ever pay for the therapies mentioned above.

I never know how my day will go.  Some are great and I can actually be a productive human being.  More often than not, though, I'm met by some combination of meltdowns, sensory overload and teen angst.   And all my good intentions?  They promptly go out the window.

So if you happen to think I'm just rude and antisocial, there may be more to the story. 

I’m a special needs mom.  And this is my life.

Accidental Expert is a writer, wife and mother.  She lives in Colorado with her husband and four children.  You can read about her experiences raising special needs children at Raising Complicated Kids.

Feeling the Love

It has been a rough week with my son, Jacob.

His ninth birthday is fast approaching, he’s not a cute little autistic kid any more. He’s getting willful, obstinate, teenagery.

I had started to write my post for today, titled “Riding the Rollercoaster” about the vast ups and downs we’ve been experiencing. About the bumps and jolts as the school year winds down, transitions towards summer school.

And about how I have been anticipating my near two week’s break with Jake at the end of this month with what, I must truthfully admit, is no small share of dread.

But I didn’t get a chance to finish it yesterday, and then this morning I had to rush off, right after Ethan’s drop-off, to our final parent-teacher conference at Jake’s school.  I was going to finish that post upon my return.

Refreshing my memory by looking over his third trimester progress reports on the subway ride down to his school, I felt myself sinking. It’s so hard too see your child’s deficits and struggles spelled out in black and white; cold ink on a page.

Reading lines like: “Jacob’s sensory processing difficulties often impede his ability to remain focused for classroom activities. He will become frustrated during challenging tasks. Jacob has difficulty remaining motivated for school tasks, and requires support during transitional periods. He also has difficulty interacting appropriately with his peers and using his language for self-expression.” just makes the bottom drop out of my heart.

I used to (sort of) brag how Jake was more flexible, less rigid and tied to routine than many other kids on the spectrum. I hope I’d said that sweetly, because I am now in the position of eating those words. 

I was thinking about all this as I finished skimming the reports. Last winter my husband had said something to me just before we went in to our meeting that set off a whole chain of thought in my head, opened up a chasm of sadness.

This time was much less eventful. We arrived at Jake’s school, and, fortified with a large iced coffee, I sat down to hear, in person, what I had read in the reports: how slow and incremental Jacob’s progress has been this year.

I steeled myself; I really didn’t want to cry in public today.

But then something else happened.

The room was full of smiling faces.

One by one, Jacob’s therapists and teachers: his OT, his speech therapist, his head teacher, his counselor, his math coach and his assistant teacher all talked about what a wonderful boy he was.

They gave examples of how far he has come in this one year, his first at this school.

They smiled as they recounted how full of joy he is, how eager to learn in spite of his many challenges. How infectious his delight and pride at learning a new skill, mastering a formerly difficult task or concept.

And most of all? They made it clear how much they love him, how happy they are to have him in their classroom, a student at their school.

Some of them will be involved in his summer program, but many will not, needing the break in order to return refreshed and renewed in September. They talked about how much they are going to miss Jake over the summer, how they are looking forward to seeing him again in the fall.

As we were leaving, someone mentioned to us that when they were planning for next year and figuring out the class configurations, his normally soft-spoken head teacher had piped up: “I have to have Jacob again, he’s MINE!”

“Yes,” she’d said, “we are fighting over who gets your son next year, we all want him.”

And then I did nearly cry.

And as we walked out of the cool school building into the blistering June heat, onto the busy New York City street, my heart was glowing like the sun.

I was full of hope for my son Jacob, who now has a whole school full of people who hold him likewise in their hearts; who are happy and willing to do whatever it takes to help him learn, grow, reach sky-high, to his full potential.

I am feeling the love.

And my gratefulness knows no bounds. 


Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.

Wednesday, June 8, 2011

Don`t Forget

I am always reminding my kids to remember things

Don`t forget your homework or your lunch. Don`t forget to treat your brother with respect. Remember that if you continue to behave that way there will be a consequence. Don`t forget you have a doctors appointment today and I am picking you up early. Remember that we can talk about that at therapy. 

It is part of being a parent. I am always trying to remember the next therapy/doctor/school appointment. I am reminding myself to buy milk and to make sure that I defrost some thing for supper. I remind myself not to yell at my kids and to be more patient with Fudge. I try not to forget not to get lost in the shuffle and to take care of myself as well as my family, the house, and work. 

Sometimes though in the business of being a parent to kids who have busy lives and lots of challenging behaviour I forget that they are children and sometimes we need to let loose and have a little fun. 

Yesterday my boys and I went for spontaneous bike ride and when we got home we were hot, so I hosed them down as I was watering the garden. The change in routine and the silliness of the event created some behaviour issues but it was worth it. We all had fun and it was nice to not be reminding them of anything except to have fun. 

As summer swings into full gear I am going to do my best to find time to have fun without reminding my kids of all the things that need to be done. We will still go to the all the appointments we have each week and there will be times when they need to remember things but hopefully there will be lots of silly fun as well. 


J blogs at Stellar Parenting 101 where she writes about life after older child adoption from foster care. 

Tuesday, June 7, 2011

Motivation to Leave the House!

Jacob loves to stay at home and hang out with me.  He has great appreciation for inappropriate TV shows (think Southpark, Family Guy or The Boondocks), and one of his favorite things for us to do together is watch one of his DVDs or stream one of his shows online.  I actually think these shows are pretty funny, and I manage a chuckle or two during each episode.  His buddies also like the shows, so it gives him a socially appropriate reference point with peers.

As nice as it is that my son enjoys my company, I am so ready form him to transfer his in-person social connection to someone his own age.  For young men like Jacob, those that are higher-funcioning on the autism spectrum but not so high functioning when it comes to social-connectedness, it's perfectly natural to hang out with the family.  A fun Friday night for Jacob is for me to make popcorn, order a pizza from our favorite pizzeria, and watching one of his preferred movies like Tropic Thunder or The Big Lubowski.  I enjoy this too, but Jacob will be 18 in September.  The summer I was 18, I already had my driver's license, a car, and a part-time job.  I was paying my own way and making my own plans, and none of these depended on my parents to make them happen. 

I wonder if this will ever happen with Jacob. 

Mind you, he has made tremendous progress, and his difficult past behaviors seem like a distant memory now.  When he was younger, his impulsiveness was challenging and he'd often do things with out thinking.  Now, I can't remember the last time he run away from me in a crowd or got upset when he didn't get his way.  He's doing well at public high school, he's getting rave reviews from his manager at his part-time Petco job, and he can walk home from school on his own without me having to worry.  This is all good stuff, and I'm very proud of him for having accomplished so much.

Not that I would change anything from the past.  I've been there for Jacob because he needed me to be his advocate, and, given the same circumstance, I'd do it all over again in a heartbeat.  And I think I that for the most part, I've made the right choices, even though most of the time it was a financial struggle.  It's almost impossible to work a full-time job when you have a child with special needs due to the demands of your child's care.  In retrospect, I don't know how I did it.  But I did, and today both Jacob and I are doing really well.  So I guess should give myself some credit for that.

But, and I say this with all affection, I need  him to need me less!  For nearly all the years that Jacob has attended school, I've coordinated doctor's appointments, arranged playdates, attended IEPs, and bought holiday gifts for all of his teachers, aides, and therapists.  And, as it is now, I'm still arranging playdates with his peers from high school, but now these are called get-togethers, not playdates.  

I feel like I've done my time, I've perserved and I've survived.  Hurray for the good things!  But I'm looking forward to the day when Jacob picks up the phone, makes plans with a buddy or a girlfriend with out any prompting or assistance from me and goes out with his friends to have some fun experiences.

That will be a happy day indeed!


Monday, June 6, 2011

Sometimes, I forget how unusual we are…

Over the last six months, I have had the perverse pleasure of raking through our family life and presenting it as though it is a story, to complete strangers. It’s a decidedly odd thing to do, to be honest. Mostly, it’s odd because it makes me realise how we have redefined words like ‘usual’, ‘normal’, ‘standard’ and ‘understandable’.

Billy is autistic (just in case you are reading my blog for the first time). His diagnosis is Autistic Disorder. He has a lot of language (though if you listen closely, a lot of it is the same thing repeated joyfully again and again, and is sourced from various corners of the cable TV universe). He is a lover, a thinker and a genuinely amenable human being.

He is most content in the company of those he knows. He is capable of learning just about anything from what we can tell, but practically nothing will be learned in that natural osmotic mode of learning that many kids experience. He has gigantic compromises in the areas of immune health, sensory processing and tolerance of babies (his nemesis).

He is an only child by choice – his choice fed heavily into our choices. He loves animals with a passion that can be quantified both emotionally and intellectually. He is bright, without a doubt, and he has the natural attention span of a hummingbird with ADHD. He is especially distracted by leaves blowing in the wind, which is surprisingly hard to avoid without carrying around a portable tent for use when concentration is required.

I know I am lucky to be able to say, he is a genuine joy to live with. While the homeschooling part of my Mummy persona often threatens to abduct every single one of his toys (out of pure frustration), my remaining Mummy bits are completely charmed by his company. Poo hell, not withstanding, our lives are pretty damned good.

Except it sure doesn’t look like that when you have to explain it to the non-ASDians among us.

'You feed him the same dinner every night? Why would you do that?'

'You don’t go places where there are babies? Are you kidding me? You can't avoid babies!'

'You allow him to ride the volume control on your TV? What if a really good bit comes on?'

When people say these things to me, I usually suck in a huge breath and begin a long conversation about why. I’m thinking ‘Hey, 1 in 58 boys with a diagnosis, this person needs to know this stuff.’ And then usually, I see their eyes glaze over, and they get that I’d-rather-be-talking-about-colonoscopies look to them. And I stop.

I stop because I think my mother once told me that boring people to tears is not a positive life skill. And I kick myself into asking about football or what Jennifer Aniston is doing (both of which I have a passing interest in, for sure). I also stop because I realise that there’s a certain type of person who will never understand the neurological/physical/cognitively different road less travelled.

It’s like trying to get me to understand what would get you out of bed pre-dawn to strap yourself into a kayak. By choice. It just doesn’t compute. I have ultimate respect for anyone who can put themselves through that kind of physical horror, and not end up with an Olympic medal of some colour. But it does not compute.

Just as it clearly does not compute for some folk, that we would put our child first.

It’s logical to us, but others have a massive problem with the fact that Billy’s needs factored just as highly as ours in our decision about having more kids. It’s natural to us, but unbelievably affronting to others that we would put Billy’s health and well-being ahead of anything else. It’s all in a day’s work to us, but very strange to others that we sometimes eat in separate rooms to avoid mealtime dramas.

In the murky, quirky nether regions between recommended therapeutic approaches and what-works-for-your-family, there is the world of ASDian families.

We try. We choke. We invent. We fail. We innovate. We re-innovate because our previous innovation ended in the dog being brought down like a gazelle and taking a cautionary swipe with a giant set of claws.

It’s been interesting, in the broadest sense of the word, to have to open our family life to the scrutiny of those who neither live it alongside us, or have any kind of emotional attachment to it.

I’ve been forced to list activities, breakdown decisions, share emails, justify doctor’s appointments and chronicle therapy choices, all to people who understand autism about as well as I understand why Brad Pitt chose Angelina over Jennifer.

The last six months have truly been the definition of the examined life. And it really has made me wonder.

I wonder if people realise the privilege life is. I wonder how the self-righteous prop up their precarious perches. I wonder if their lives would stand up to similar scrutiny.

The pleasing thing about the scrutiny, is that I know, for sure, that despite the tsunami-like curve ball that life has thrown us, we have made a lot of damn good decisions. I know this because I am now frighteningly au fait with every possible piece of legislation that relates to disability, education and child protection in this country. I also know it because my deeply vulnerable child is alive and happy.

I feel like I've gained a PhD in life. An odd PhD in odd life. A PhD in putting fear to rest.

I’ve said it before, but I’ll say it again. I would not wake up screaming for it in the night, but special needs parenting ain’t all bad. It’s introduced me to lovely people, it’s awoken a fearsome capacity for research and it has distracted me from the spectacular flatline that is Jennifer Aniston’s film career.

Speaking of which… Am I the only one who thought her child in The Switch was probably an aspie?


Valerie's increasingly random ravings can be found at Jump on the Rollercoaster. She is the author of The Autism Experience - a collection of international perspectives on autism parenting. 


Sunday, June 5, 2011

Letting go of Guilt


Last week a neighbor came in and pressed this pamphlet from Curves in my hand.

She talked about how much she loved going and how I should really go

She is not really hinting at my corpulence- as she has also bought along a plate of chocolate chip cookies

She is worried about me – "I am thinking of your whole life K .. all you do is work .. you need to do something for yourself.. you are either in the office or doing things for R .. where are you in all this "


I hear her and appreciate the kind thought

But I do not know how to explain that the LAST thing I need is one more thing to do (even if its for myself)

One more thing that takes me away from playing with R would be more than I can bear

Here is the unique burden of mothers of ASD kids –

The wide spectrum of ASD and all the stories of the "recovered " children- all these parents that basically devoted their entire life to therapies - tells you that with all the right therapies and enough hard work your child may recover

The corollary of that is, if your child does NOT recover – you did not work hard enough

This is the sad secret that many of us mums carry in our hearts!

We did not do enough, we failed our children

Its one of the reasons that I feel almost a constant sense of guilt ( in fact from some of my virtual friends I learned that not just the WOHM - but even those moms that homeschool their kids and are Stay at home moms- basically doing the ideal – feel guilty)

All the daily chores of life – the laundry the dishes working, work trips – all the things that keep me from playing ( read that as building new neural connections )

People say grief has many cycles –I feel that way about guilt.

Someday it's my primary feeling on parenting , some other days I am mellow about it

It ebbs and flows insidiously eating away at joy

Today at the end of a corporate retreat that I was so dreading( as it meant two more evenings that I am away from home and R is probably playing on the computer ) and yet I can see has been good for me another thought has been blinking on the radar

What if I gave up on perfection?

But focused simply on the most I can do – when I can do it.

The stories of all the warrior mothers who inspire us and fill us with guilt are told and retold

But what of all the stories of those parents who worked just as hard – without recovered kids- (

 I know many of these mothers  )

What if for some of us there isn't a magic formula of "tons of therapy"=normal child

What if transformation isn't even the point?

For deep in my heart I know R is a gift – in some ways inspite of and in some ways because of Autism

A fellow blogging mom asked what would happen if she let go of fear

And I ask myself - what would happen if I let go of guilt?

K Floortime Lite Mama - blogs at Floortime Lite Mama  about her life and her charming 6 year old  autistic son and is trying not to feel guilty about reposting a post from 2009 becasue she completely forgot it as her day to post today :-)


Thursday, June 2, 2011

What If . . .

I am a realist with a Pollyanna streak. But I ‘what if’d’ myself silly the first year of my kids’ life.

What if . . .
- I’d only had one baby?
- There had been no complications at birth?
- I didn’t have to drag to therapy every day now?
- What if my son never walks?
- What if my daughter always has behavior issues?
- What if I had the time and energy to just make it through a Zumba class?

The list goes on.

Expectations can really mess you up. At some point I realized the only thing I should have been expecting was the babies. We gave ourselves the first year to grieve what our vision of parenthood had been. Then we resolved not to talk about it near the kids so they would not pick up any negativity. Then it was sort of a grieving process again, trying to bit my tongue, find other ways to say things in front of the kids and manage myself.

What if . . . the possibilities are endless. Mostly not good things. But . . . what if . . . the good thing(s) happened? Indeed, what if . . .

_Lexi is a mom to triplets and a teenage stepson, and writes about parenting and figure skating._

Wednesday, June 1, 2011

Preparing for the Hospital-What Caregivers Can Do

Well, this couldn’t have come at a more fortuitous time. My daughter is currently on the kidney transplant list (so if I disappear for awhile, you’ll know why) and National Family Caregivers newsletter came yesterday with the article “Be Prepared for a Hospital Stay”. I thought I was organized until we had our first trial run and I had to pack everything.

First and foremost, I’m bringing the necessary paperwork. This can vary by family but would include insurance and/or Medicaid cards, guardianship/advance directives, list of medications, etc. We’re fortunate in NJ to have paid family leave, but even in states that don’t have this, parents are eligible for the Family Medical Leave Act. I also brought a list of phone numbers I’ll need, including as schedule of future therapies, transportation, etc. I’ll need to cancel. Lastly, I’ve drafted both work and personal emails to hit send, especially if we get called in the middle of the night, in case we need to leave quickly so everyone won’t wonder if we’ve dropped off the face of the planet. And make sure someone has a spare house key (and maybe you need a pet sitter or just a plant waterer) and that you stop the mail, newspaper, packages etc.

So then down to practical matters. We don’t go anywhere so I had to actually get suitcases for each of us. Then I made a list for each person: clothing, meds., toiletry, and fun things like books (like we’ll have time). For my daughter I also packed security items like her pillow and stuffed animal but I had to wash them first!

So what did I find out? Even if I do laundry twice a week, we still don’t have enough clothes to bring unless we constantly want to pack and repack our jeans (don’t have too many since only wear on weekends). Ditto for things like toothbrushes, brushes, shampoo, etc. But it also helped me pare down what was nice to have (e.g. perfume, hand lotion, etc.) vs. what was essential. So now that is was a false alarm, we’re going to buy a few extra clothes and double personal care items so we can leave the suitcases packed which will make things easier when the time comes. I’m also keeping each person’s list in their suitcase so we’ll know that we brought everything back home. And don’t forget if your child is bringing an IPod or handheld videogame to bring the charger; ditto for your cellphone.

It’s helpful to ask the hospital social worker what you should or shouldn’t bring. Also, I went on the hospital website so now have a map of departments and where to get food, gift store, etc. I also found besides Ronald McDonald Houses, there’s an organization that helps with lodging, food delivery for both patient and family, and other support. Priority is given to families of Jewish faith since food is kosher but all are welcome. So I’m glad we have more time to fix what was missing and next time we’ll be ready!


National Family Caregivers Association
“When your loved one is hospitalized”

National Transition of Care Coalition-Guidelines for a Hospital Stay


Support for Families of children with life-threatening illness

National Family Medical Leave Act

Remain Hopeful,