trans....

transition

transfer

transform

transitory

translateSave & Close

"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. 

I'm on Fear Factor...

I wondered about the consequences of bringing it back. Now I think I understand.

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.

How to cope with the things people say ?

One of the hardest things for mums and dads of auties is  what I call  the “coming out”.

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 

Everyone Has Something

Coming home from karate the other day, my typically developing triplet pointed out to me that his brother sometimes needs help walking. “Yes”, I told him. “He does.” He went on to tell me that he doesn’t need help walking, and that he wondered why his brother does. This has never come up before, but now that they are four, they see and question more than they ever have. So I told him. “Your brother has Cerebral Palsy. That means his body doesn’t do what he wants it to do the same way yours does.” I could see him thinking about this, and as he stumbled over the pronunciation of what I just said. “So he needs help walking, right Mom?” I smiled to myself. Simple explanations are so much easier for young children.

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.”

The Squeaky Wheel

I’ve heard from many families about unequal healthcare.  A friend in another state who had a terminal illness and diagnosis was delayed due to the type of insurance she had.  Another who was told of a possible terminal illness but sent home from the hospital the same day due to lack of insurance.  Someone was inadvertently taken to a drug rehab rather than nursing home rehab facility.  A child denied dental care due to her disability.  Still another child denied therapy because as the insurance rep. told the mom on the phone “he was going to die anyway!” 

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