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"Trans" is a prefix we are using a lot around out home right now because we are in the process of transitioning a little girl into our family and that means there is a lot of transformation going on. We are going from a family of all male children to a family of girls and boys and that means a shift in all sorts of things in terms of both stuff we posses and habits we have. Less of a change for me, the lone female, and more of a change for everyone else. 

We are excited, we are working toward having her here fulltime in mid March. She has her own alphabet soup of issues just like our boys do but at the end of the day, she needs a family who is going to stick with her regardless. We are nothing if not commited and although she is going to keep us busy we are very committed to making sure that this little girl makes a successful transition into our family. A family where the testosterone has over powered the estrogen for a long time and although I love having sons with the rough and tumble world they drag me into, but I am looking very forward to having a dollhouse in my home and perhaps painting nails kids again ( the boys will not let me paint their nails anymore)

J. writes here once a month, although she disappeared for a few months ( life gets in the way of blogging sometimes) but she is hoping to remember that this is where she is to post on the 8th. She also writes at least weekly at her blog Stellar Parenting 101 where she talks about the journey of domestic older child adoption from foster care. 

No, I didn’t have to drink anything ooky that came from the nether regions of a donkey. However, what has gone on this week has filled me with the same foreboding that I imagine the contestants on that show feel.

Last week, we had the ‘mental collapse’ brought on by blood tests. This week, it was a whole new box and dice (box of dice?)

On Sunday morning at 6:14am, Billy was sleeping beside me (have I ever talked about the co-sleeping, bedtime tango?). At 6:15am, I heard a really odd grunting sound. I thought it might be the dog dreaming, but it wasn’t.

It was Billy. His whole body was tense. He was jerking all over and the grunts matched the jerks in tempo and intensity. His eyes were fixed to some spot somewhere between himself and the North Pole.

He looked exactly like one of those cartoons where someone has been plugged into an electrical socket. But a little more gentle and without the spiky lines around him for emphasis.

I called out for Billy’s Dad to come in from Billy’s room, and through the jerks, Billy was able to say, ‘I… don’t… think… he… can… hear… you…’

I fumbled for my phone, to try and video what was going on, but of course, it was one of those iPhone moments when the camera takes forever to open. By the time it opened, Billy was still.

He tried to move, but he couldn’t. He tried to talk but the words came out all jumbled. He slumped back onto his pillow and fell into a deep sleep.

He barely moved for the next 3 hours.

A seizure.

So that’s what they look like.

The rest of Sunday was spent in the Emergency Room, among kids with mysterious joint infections, inflamed appendixes (appendices?) and heavy dependence on vomit bags.

Billy was chirpy as a lorikeet, if a little tired. They checked his neuro signs, they checked his blood levels and sent us home. We were given instructions on how to book an EEG and how to handle future seizures.

We have officially entered ‘the early days’, from what we understand. Every doctor, nurse and receptionist is clearly used to dealing with the anxieties of parents with seizing kids. They all use the phrase – ‘The Early Days’. It sounds vaguely colonial, or primary coloured, almost charming.

We watch, we wonder and we wait. Actually, we wait quite a bit. For EEGs, for appointments with neurologists, for more seizures or no more seizures or something that resembles a pattern that may form a part of our future.

And that’s why I feel a bit like a contestant on Fear Factor.

It’s not so much that I am actually worried about what might actually happen, though I clearly am, but that I am almost certain there’s something even more disgustingly confronting around the corner.

I did not expect this one. I did not want this one. I am one step further away from the chance to flick my stylishly cut hair around and bitch about how Billy doesn’t get enough game time in soccer. And I’m not thrilled about it.

I know it could be worse. I know he is fine right now. I know, I know… but really. Enough.

I feel like the producers of my life have decided I just might be the contestant that can take the cockroaches on the face, or the poo sandwich.

If anyone has their number, could you please tell them I actually can’t? I’m not up for it.  I’m quite happy to be the one who flies under the radar and ends up semi-sweatily hanging on the coattails of some real competitor.

I am afraid.

Of pretty much everything.

I’m afraid that my child who struggled so with vaccines in the first year of his life is carrying a real burden. I’m afraid that my child who got hit with a gigantic auto-immune hammer in his 4^th year on earth is struggling more than we know. I’m afraid that the odd drug reactions and the twitching after living next to a pool full of Roundup are signs that worse is to come.

I am also afraid of kittens and puppies and lollipops. Why not? Stranger things have happened. My perfectly beautiful child is being assaulted by the world around him and no-one outside of the special needs community seems even vaguely concerned about it.

‘No’, they say, ‘There’s no evidence of that drug reaction’. Really…? Here’s evidence. His name is Billy.

‘We’ve never seen a child have seizures after coming in contact with that substance’, they say. Really…? Here’s one. His name is Billy.

‘We don’t believe there’s a link between those vaccines and any neurological changes’, they insist. Really…? Because we don’t want to believe it, but we live with it. Actually, he does. His name is Billy.

I don’t like being afraid. I do not need any more practice at being afraid. I am naturally quite good at it.

I’m sure we can suck up the idea of seizures and move forward. We did it with autism. We did it with Transverse Myelitis. But I’m also definitely sure that we don’t want to.

Just like I have no interest in eating equine testicles.

Enough already. Roll credits and move on to an episode of Parenthood. Those usually end well, right?

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

Of disclosing to the world that your child has autism

THow do you reply one day to the he breezy question of “Hows the little one”?

You have always replied “doing great”

Do you one day, just state baldly “ well actually he has autism now !”

When we first found out, I told just my very close friends ( those with who had discussed with me the all consuming  “does he/doesn’t he” of the months before getting an official diagnosis of he-does) .

 I told them by email and I told them that I did not want to talk about it at all.

The talking could come later.

Many people said kind things "Must be hard.... is there anything I can do?"

But the words of other people ( even when, well meaning  ) hurt so deeply 

"Did you see that Larry king show" ( where the mother was taking about killing herself?) 

Will you be taking him to Vegas to play the slots? ( yup mother-to-rainman, every woman's dream) 

"I read this great book - this mother stopped giving her kid cheese and he became unautistic "( thanks for letting me know ) 

"I used to think i had it tough .. after seeing what you are going through -- I am going to stop feeling sorry for myself "( I always planned to get to the bottom rung of the pity ladder )

Just curious.. if you could do it again what would you do different …You must really regret vaccinating your child( ouch !!)

Do you think its because you were so stressed when you were pregnant?” ( always a comfort to know that it was my fault ) 

“These are chosen children of God!” or –“this is just a penitence for past sin” or “god has only given this to you because you are strong”( wasn’t feeling so lucky to be chosen )

And the worst "Soon they will be able to screen for autism in utero and we can prevent autism "

How it hurt!

But, the truth is that most people were  just looking for something to say.

Often ,in fact,  they  were trying to read my attitude to see what would be  right thing to say. 

Should they should sympathize or offer something uplifting?

Sometimes, of course,  they were not thinking at all

But, almost never, was anyone looking to hurt

The intent was usually kind

All my life, I have been deeply in love with words.

So much of my childhood filled with pleading for more reading time while my mom told me I was ruining my eyes and threatened  to turn the light switch off !

But being loved so deeply by R - my child, silent for so many years- taught me to look beyond words 

He taught me to look to the intention behind the words.

And it makes all the difference to how I feel about what is actually said

The second thing that has really helped, has been falling back in love with life and realizing our child is the best child in the universe to us.

So I can  truthfully answer" he's great". A cue to starting the kinds positive conversations 

The third thing that has made a difference has been to teach myself to be a little less sensitive 

The other day an elderly aunt commenting on R’s talking asks” will he always talk like this or will he improve any more”

My mum, on hearing this quickly comforts me “oh she is a broken drum ( Bengali proverb) no one knows what sound will come out of her next.. let it roll off your back “

And I can !

I , Floortime lite mama blog about my adorable son, my life and joy at www.floortimelitemama.com. Come see me there 

Then he went on to tell me his sister doesn’t need help walking, and she doesn’t have ‘spec-cere-ball’ (pause) pal-zee’. “Actually baby, she does too.” His eyes got huge as he tried to comprehend that one walks, one doesn’t, but they both have something. He frowned, trying to reconcile this in his mind. “But she walks Mommy.” “Yes, she does”, I told him. “She needs help with different things than your brother does.” I told him everyone has something they need help with. Some things you can see, some things you cannot. But all people, everyone, has something they need help with. He was quiet for a few minutes, looking out his window, then turned back toward me. “What do I have Mommy?” And I said, “You have compassion, and a brother and sister who have a lot to teach us.”

They call it “health disparities”.  Worse outcomes due to inequities in care that can result in increased morbidity (illness) and mortality (yes even dying).   Sometimes it’s due to the type of insurance.  Sometimes it’s based on race, sex, gender identity, age, disability, or economic status.  Discrimination.

Healthcare reform will hopefully address some of the inequality.  In the meantime, it’s up to parents to speak up for their children to make sure they get the care they need.  I’ve seen posts on blogs, petitions, and social networking.  Although it may raise some awareness and could help to vent, it’s frustrating to see all the wasted energy but no action.  Support groups are great for empathy, but parents also need to advocate (“to speak for another”) for their children to make things change.  In doing so maybe policies change so separate families don’t have to keep fighting for the same issues.  And also teach their children “self advocacy” for themselves eventually.

I’m sure you’ve heard the metaphor “the squeaky wheel gets the grease” (if you haven’t, it basically means to make noise to get attention.)

Although this unfairness increases emotions, families may need to take a break and try to deal in the facts.  Is it really discrimination or are there no good choices?  Will this treatment help or just grasping at any hope?  It’s so hard when parents are desperate for anything to help at any cost. 

However, there are protections in place and organizations that help.  In each state there are Family-to-Family Health Information Centers and/or Family Voices where parents provide free help on healthcare issues to other families.   If families feel their rights have been violated, they can call the Office of Civil Rights.  For people with disabilities, families can contact Protection and Advocacy.   Remember when it’s needed to be the “squeaky wheel” so that your child gets the best care. 

Remain hopeful,

Lauren

Resources:

Family-to-Family Health Information Centers/Family Voices

http://www.familyvoices.org/states

Office of Civil Rights

www.hhs.gov/ocr

Protection & Advocacy

www.acf.hhs.gov/programs/add/states/pas.html

On each occassion we were met with understanding and compassion. Our kids felt super cool getting to sit up high, away from the crowd. 

Kids with special needs offer the general population opportunities to demonstrate kindness. Most of the time, people rise to the occasion. 

With so much seemingly wrong in the world today, it's little things like this which make me feel hopeful. 

Michelle O'Neil is author of Daughter of the Drunk at the Bar. She's written for many publications including Literary Mama, two special needs anthologies, a professional journal for occupational therapists, and her radio pieces have aired during NPR's Morning Edition in Washington, DC. She has an 11 year old daughter with Asperger's and a 9 year old son with auto-immune issues which appear to be PANDAS. She blogs at www.fullsoulahead.com.

I am in clean house-ivity mode, anxious to get things done and put things away.

Nicholas is still in the holiday mode.

He loves to watch the warm, colorful lights on the Christmas tree. He delights in lighting the candles in each window every night. He enjoys living in a house filled with decorations. If it were up to Nicholas, Christmas would never end. Holiday lights and magic would continue throughout the year.

But this month my need to control clutter has escalated. I am starting to notice a trend. It seems that when I receive difficult medical news or another new diagnosis for one of my children, my pathetic need to control "something" in my life goes into overdrive. I go on a cleaning rampage.

Nicholas, seems to instinctively understand this quirky characteristic in his mother, and goes on high alert.

He becomes the Decoration Detective of the House. Throughout the day, he makes his Christmas patrol around the home to ensure his wacky mother has not hijacked any of his holiday cheer. He carefully counts the lights in the windows and the ornaments on the tree, performing a careful inventory inside his little head.

I, on the other hand, have become more like the Grinch, tip-toeing through each room removing the bamboozles, the woozels, the clumtrumpets and trains.

Today, I see Nicholas distracted in the living room, and pounce on my chance to de-Christmas the house.

I hug our life-sized Frosty the Snowman and head up to the attic, quietly climbing the stairs to carefully hide the white plastic man from my adoring young son.

"Mummy, what are you doing?" I hear Nicholas shout from the living room.

"Oh, nothing...." I say and kneel on the steps. I try to become more quiet but bang my head on Frosty's giant mittens instead. Like a bullet fired from a gun, Nicholas climbs the stairs to investigate.

"Not my Frostyyyyyyyy!" he screams and starts to cry.

Fat tears fall from his eyes like rain.

"Mummy, you can't put Frosty awayyyyyyy!" he says as if I am sentencing our chilly friend to a lifetime of hard labor.

"No Mummy, pleeeeease!" he says, and now I too feel like crying.

"Wait Nicholas, I have an idea!" I say and immediately he stops crying. Once again those four little words have saved my life.

"Why don't we put Frosty in your room! That way you can still be near him. He can watch over you when you sleep! What do you think?"

And like a happy switch has flipped on in his brain, he immediately shouts,

"Yeah!"

"Oh Mummy, that's a great idea!" he shouts.

I carry poor, old Frosty back down the stairs and place him at the foot of Nicholas's bed. As I plug him into the light socket, Nick smiles and jumps onto his bed. He lies back and is immediately mesmerized by the cheery face of the watchful snowman. He is happy.

"Nicholas, I am going to put some of the other Christmas things away now." I say delicately to my son.

"OK, Mom," Nick says agreeably.

The warm glow of the smiling plastic man has relaxed my anxious son. Like a powerful sedative, it has calmed him.

I too am suddenly mesmerized by the vision of the tall silent snowman standing at attention by the foot of my son's bed. But this vision seems familiar to me. What is it? I think to myself. Something standing watch over my son......? And suddenly I remember the words from a story I wrote shortly after Nicholas was born,

 My son lay limp upon his hospital bed. A yellow feeding tube was taped harshly to his soft cheek; it traveled up his nose and into his stomach. To his soft skull another plastic tube was taped, pumping antibiotics into his fragile veins. Around his floppy body, a brace made out of thick straps and stiff Velcro held his weakened hips in place. Feeding machines and intravenous poles surrounded him like quiet metal soldiers standing at attention. Everywhere, alarms sounded, a constant reminder that this was hell and we now lived in it.

(To read the story in its entirety, click here)

As I see the quiet snowman standing at attention at the foot of Nicholas's bed, my eyes start to water.

I am reminded of his infancy when instead of joyous snowmen, metal feeding pumps and tall IV poles stood watch over my fragile child. And although Frosty the Snowman may now take up permanent residency in my son's room, I am thankful for this joyous new image. I am thankful for Nick's health, his strength, his love for life.

My desperate need to clean the house is suddenly over.

My curse has been broken.

"And the Grinch found the strength of ten grinches, plus two"

To read more about our family adventures, please visit us at www.onalifelessperfect.blogspot.com.

This morning, as he cozied up in front of the heater in his jammies, I should have reminded him to get dressed for school but instead I casually asked if he'd be interested in a sleep-away camp for kids with Prader-Willi at Camp Harmon this summer.  I think that conversation would have gone fine if I had not, in the very same breath, asked his 7 year old sister if she was interested in circus camp. Oops.  

Oscar's heard all about circus camp from our babysitters who are counselors there.  They've told him about the friendships and the art projects and the circus activities and the big show.  But what he remembers most about circus camp, I finally cajoled him into telling me, is that at circus camp you get ice cream as a reward for doing the dishes. Every night. Based on that alone he has decided that circus camp is for him.

I tried to tell him that I didn't see him being interested in learning to walk a tight rope or riding a unicycle or swinging from a trapeze high off the ground. 

I tried to tell him that I know he likes art projects, but that he also likes animals and basketball and that I was thinking about a camp that had those types of activities.

I tried to tell him that the Camp Harmon was like the family camp we go to every summer except that he gets to go with friends.

With tears brimming and lips quivering he asked why he had to go to a camp with all the "Prader-Willi people".

(I spent the next several minutes lecturing him on people-first language and not calling himself or letting others call him a "Prader-Willi" while he stared at me with a stunned look on his face.) 

And then I answered his question.

"Because, sweetie, at Camp Harmon they understand Prader-Willi syndrome and they know how to keep you safe.  Even if you went to circus camp you wouldn't be able to have ice cream every night as a reward for doing the dishes. Eating all of that ice cream would be dangerous and make you sick."

He formed a little circle with his index finger and thumb and said he'd be ok with only having a tiny bit of ice cream every night.  "I wouldn't need a lot, Mom, I swear."

He calmed down only a little when I reminded him that so many of the kids he looks forward to seeing at our fundraising walks, and support group meetings, and even yesterday at a middle school he was visiting have Prader-Willi syndrome and that many of them attend this camp. He smiled when I reminded him that Emilie and David and Owen would probably be there.  And he looked maybe a little relieved when I told him he didn't have to go to camp at all -- that I was only giving him the option.

I'd like to say this conversation ended elegantly but it didn't.  When I finally stopped talking sadness overwhelmed him again and the tears flowed harder.  So I tracked down his iPod, found his favorite Green Day album and plonked the headphones on his ears.  And I hoped that the abrupt transition to something he loves would distract him enough so he could get ready for school. (It did.)

We'll revisit this conversation again soon I'm sure. As Oscar heads toward adolescence he will undoubtedly notice more differences between himself and his typical peers.  He will have more questions. There will be more tears.

I am hopeful, though, that the opportunities he will have in life will always be meaningful and satisfying, even if not exactly the same as his typical peers.  I will insist.

***

Mary Hill lives in Berkeley, California with her husband and three children, ages 13, 11 and 7. She is actually blogging again over at Finding Joy in Simple Things.

Autism

Autism knocked on my door

in the middle of a life

I thought was under my control,

and settled in comfortably

behind the eyes of my two year-old son.

I am trying to get to know this condition,

to observe its daily needs,

to chart the frustrations, ecstasies,

and windows of possible change.

It swept through my house

and cleared away

all fantasies, pictures and maps

of the family

I was supposed to have.

Its luggage was heavy,

loaded with old stories,

fat with fear.

Autism leaves things lying around

ready to trip me

just as I begin to walk again.

Jennie Linthorst, MA, CAPF, 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”.