I was not going to write about this because it is a very hot-button issue in our house. But for that fact alone I have to post it. This blog is about us redefining perfect in our lives – and telling how we do it. No subject should be avoided, especially the ones that cut so deep to our heart that we fight about it within our house. Because this is one of those topics w/ opposing viewpoints (at least it started that way) – I’ve asked Archie to write a post as well. I’ll post it once he has written it.

Riley started school a little over three weeks ago.

She’s 5 years old.

She’s intelligent beyond belief. Possibly even brilliant.

Socially…emotionally…well, let’s just say she’s not near as ready.

I didn’t think she was ready. Not for a classroom full of crazy kids (not that they’re insane, they’re…well, for lack of a better term…they’re normal). Not to be expected to be that same normal.

I admit to a bit a bias. Our first attempt at school was not successful. It was developmental preschool, specifically for special needs. Riley lost learning. Her behavior at home became erratic and violent. She was withdrawn before Christmas.

Now she had to go to ‘normal’ every day kindergarten…with neurotypical kids.

I wanted her evaluated first.

School said no dice – she has to be in for 6 weeks so we can see how much is normal reaction/adjustment to being in school.

It went against what my gut said – but after much debate and discussion with Archie (who believed just as strongly that she had to go into school), Riley was enrolled. Literally the day before the first day of school she was enrolled & given a teacher whom we met that very night.

We ‘warned’ her teacher, explained how Molly was. How they wouldn’t evaluate her and just gave her a heads up on what she might expect.

The next day school began.

The roller coaster ride took off so fast I couldn’t catch my breath.

Excitement. Anger. Glee. Stress. Happiness. Stubborn refusal to attend.  Joy off the bus. “I don’t want to go to school.”  “I had much fun at school.” “I miss you Mom.” More stress. Increasingly erratic behavior at home.

Every day is a struggle to get her to school. She doesn’t want to go.

Then off the bus it’s happy and chatty.

Within an hour I’m fending off the hounds of hell. Trying to keep calm.

Suddenly Riley’s aversion to loud noises is back with a bang. At school the teacher has given her leave to put herself in time-out with her own personal basket of Sensory Diversionary toys when things get ‘too loud’ or ‘too crazy’ for her.

Then we get a letter from school, informing us that they are recommending Speech Therapy for her. That (surprise of surprises) she qualifies!

Well, DUH.

The more I thought about it, the more annoyed I got.

I could have told them that.  If they’d evaluated her BEFORE school, all of that would be known.  I don’t NEED her to be forced into ‘normal’ behavior for six weeks to tell you how she’ll react and what she needs.  Don’t make me wait (at least) 6 weeks to get her what she needs. To make her teacher fumble around for (at least) 6 weeks to try to figure it out. Don’t make an innocent child suffer for 6 weeks for something I could tell you NOW. TODAY.

It’s all rotten.

And I still hate it. My gut still tells me to get her the hell out of Dodge until she’s ready.

Before my eyes she’s unraveling again. The balance we achieved has been thrown off. I don’t know if we’ll ever find it again…whether she stays in or gets out…the balance has been shifted forever.

We’re still in the middle of this process.  Decisions are being made and changed, and we’re trying to find even ground again.

If there is such a thing anymore.

*Otherwise titled “The post in which I piss people off.”

From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley.  From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head.  From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up.  Every day, every night, every in between we are aware.  We notice when Angel runs out of steam before she’s played for ten minutes.  We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions.  In danger of a night of a screaming, pouting, angry Riley.

We notice it all.

We see it in the every day.

We see it in the little things.

Every action, every reaction.

It’s a part of our lives.  It is our every day.

Then you come along and say “But she looks just fine to me.”  Or “She doesn’t seem autistic.”  And of course the “She doesn’t act sick.”

I know you mean well.  Really, I do.

But I hate it when you say that.

It’s like you’re belittling our every day.

The hours at doctors and specialists.  The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours).  The hours a day hooked up to machines to live every day.  The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm.

I know you don’t mean it this way.  I know you just mean to say that despite their troubles they look healthy and happy.  That unlike other children with special needs it’s not a visible/noticeable difference.

But I hate it.

Just say they’re beautiful.  Say they have a great smile. They look like they’re having a blast.

Don’t contradict what we KNOW.  Riley does have autism (no matter how mild). Angel does have CF, and right now she is sick (and we spend every day wondering just how badly it’s holding on).

It is our every day.

We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives.

Gimme head with hair
Long beautiful hair
Shining, gleaming,
Streaming, flaxen, waxen

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[View with PicLens]

The time has come, the girls are at the age for “pretty hair”!  The whole reason I wanted girls…to be able to do their hair and play with it and style it.

They still don’t sit perfectly still.

There are occasional struggles.

But we all love “pretty hair”.

In two weeks it’s time for my Irish Twins birthdays.  They’ll be five and four. 

Riley is trying very hard to read, and Angel is doing her best to follow right behind.

Riley can write her own name (forward and backward, literally), and is figuring out how to write the numbers 1-10.

Angel is curious…about EVERYTHING. We cannot keep her out of anywhere from touching anything.  She is the child that as you run through the store runs her fingers along the shelves and tries to touch everything she sees.

Riley is cautiously curious outside of the home and her comfort zones – but around people she knows is talkative and friendly.

They are each others best friends and worst enemies. 

Technically I should be signing Riley up for Kindergarten based on her age. That doesn’t seem real. It seems like just yesterday that I was in the hospital watching them decide the new pope on TV while wondering when the pitocin was going to make labor actually hurt (didn’t take more than a few hours).  Or just this morning that I walked the four miles to and from Dairy Queen to try to spark labor for Angel, and lamenting the fact that it failed (it didn’t – just took two hours to hit me). 

The days of diapers are finally gone (almost – we still wear pullups at night).

The days of learning and growing and wonder at the world around them have arrived.  They are curious and thirsting for knowledge – and I can’t wait to keep watching them learn. 

I miss my babies.  More than I imagined…

But I’m loving the excitement of my big girls and their big personalities.

Today is “Autism Awareness Day.” 

For some reason as I heard the words in my head this morning I immediately became amused.  I understand that it’s about spreading awareness of autism, but I could only laugh and think But I’m aware of it EVERY day.

This is our face of autism.  Those gorgeous ice blue eyes.  The smile that has found its way to her face somehow. The personality that is starting to grow.

Most would call us blessed, and we agree.  Riley’s form of autism is mild enough that she will likely lead a “normal” life. A job, a family, all that a parent imagines for their child. That doesn’t mean she won’t struggle. That every day one quirk or another won’t rear its head to impede what would normally be an easy step into a careful shuffle of feet.

The little reminders that pop up.

The way she organizes her M&M’s by colors in a snakelike form before eating.
The way she delicately nibbles, trying not to let the grease or crumbs of food touch her lips or outside of her mouth.
The way we cannot break our established program or routine without a meltdown.
The way her hugs are strong but brief, no linger touches or snuggles.
The way you see her mind processing and learning everything she cannot express verbally.

Leaps and bounds of progress have shaped our winter, a sparkling personality is emerging from behind the walls.  With those she trusts she is bubbling and bright, even bossy…but the meltdowns still linger.

We are blessed. 

All parents are blessed. 

I hope today your awareness expands, but shouldn’t it every day?

Last year I was afraid to try again.

Five months ago I took the leap.

Four months ago I was afraid to hope, but felt it creeping in.

Today was the big day.  Technically it was the FIRST of TWO big days.  We met with the Developmental Pediatrician. It was a scant hope, but it was my last ditch effort. The final specialist in a long line of specialists and the last thread of hope in a dim and dismal heart.

I got up and the crack-of-dawn o’clock and hopped in the shower.  I got the girls dressed (In-Laws were sick so the 1 child at a time ruling had to be abandoned), fed and in the car.  Along the way I stopped and used my gift card from the Moms Marbles twitter party last month (thanks, ladies I loved my mocha!!) at Starbucks and we headed up to the North Side of the city.  We arrived perfectly on time and headed back for Riley’s appointment at the exact time we were supposed to be in.

And we waited.  and waited. and waited.  30 minutes later the nurse popped in to tell us the doctor had gone to the wrong office. So we waited another 30 minutes and the doctor showed up.

It was worth the wait.  It was worth the 4 months it took to get into her office to even see her.  It was worth the hour wait.  Why?

For an hour and a half – a FULL 90 minutes – she sat in that room.  She never left. She sat there.  She listened.  She talked.  She HEARD me. After years of frustration and fears…to be HEARD…that is the most joyous part of it.

She looked over Riley – took a full history asked many many questions – questions not even I could remember the answers to.

We have confirmations, we have suggestions…we are feeling hope.

I go back on Monday with Angel.  At that point the doctor will give me a list of items from today’s visit where she’ll write down EVERYTHING we discussed today.  Suggestions for therapies, help for insurance/assistance, suggestions and numbers for groups not just to support Riley (and Angel when it’s her turn) – but to help US cope.  The adults. 

Do we now have all the answers?  Heavens, no.  But this doctor is helping us define a path.  For each girl, individually.  She is listening to us. 

And that…that is the most wonderful thing in the world.

Riley has never been one for communication. She didn’t speak her first word until she was almost 2. Years of Speech Therapy have yielded a capability to say words and even full sentences.  But actual communication?  It’s a struggle and you’re never sure that she’s even actually being truthful – or just agreeing to get the conversation over.

When it is time to have a serious conversation with her, it’s like she instinctively gets the ‘confrontation’ vibe (even if not in trouble) and she shuts down.  I wonder sometimes if we don’t need to resort to a complex series of clicks, whistles, and hand gestures to communicate with her. 

The other night we had to have one of those.  We wanted to talk about something – but to actually get her real input on it.  We attempted a few formulas and eventually got a semblance of a conversation – consisting mostly of nods and yes’s or no’s from the Riley-girl – but a conversation.

We started by making sure she felt ‘safe’…sitting by Daddy w/ Mommy across the room – and sissy in bed. Daddy talking to her without looking directly at her.  Occasionally I would ask a question in a different way. 

A few words later, several head nods later…the conversation was over with Mommy having joined them on the couch and a snuggle session in full force.  We were soon tackled by a little tornado of a monkey and all was righ twith the world again.

Have I mentioned how jealous I get going to blogs and seeing 2 & 3 year olds having true conversations and clever comments posted?  Brandon was like that 10 years ago…now my girls are almost 4&5 and I still don’t have it with them…although Angel is getting closer than Riley (but Angel is pure goof-ball *G*). 

But with baby-steps…eventually I’ll be having conversations with my daughter so brilliant that it will be ME not able to keep up…and I’ll be mystified that it was ever such a struggle to converse.  At least, that is the dream.

The things we take for granted in our lives is amazing.   We forget to stop and see the small miracles that occur every day, we just look for the big ones.  I’m guilty of that when it comes to Riley.  I thought she would grow and advance just like every other child.  I didn’t want for her to have the problems I had to go through.   

We went to the geneticist for over a year before we got a diagnosis. He wanted to observe her and watch how she grew before he said anything definitive. 

After so many visits he was finally ready to tell us.  The diagnosis was autism, specifically pervasive developmental disorder (PDD-NOS).  My wife and I were stunned.  It didn’t change how much we loved her, looked at her, or treated her - but I felt responsible.  I was the one with all the problems growing up, and the lingering ones as an adult.  My wife had a typical childhood, no major problems to speak of. Her first child was neurotypical.  No, if Riley was ill, it was because of me and my blasted genetics.

Riley was still not talking, or smiling much.  But she was playing “outside” of herself.  Any situation where a lot of people were involved made her extremely uncomfortable, often resulting in a “meltdown” as we called them.  She did not like for anyone to initiate touching or hold her unless it was herself.  We saw a little girl locked inside herself, and we had to find the keys. 

As Molly grew, we were enrolled in an assistance program that helped us find and meet her special needs.  She met with various therapists each week to help her reach goals that were set forth to bring her development up to speed.  She also was able to attend a special needs pre-pre-school , which she started out very withdrawn, but ended up comfortable and playing/learning/chatting with the other kids and teachers.  My Riley was coming around, and I couldn’t have been prouder.

Riley began to talk, she had been saying some words, but now she was really talking.  It was very difficult to understand her sometimes, at least for me.  My wife spent all day with her and it was easier for her to pick up Riley’s speech.  But she was improving.  Her weight was always on the low side, but her height was average to tall.  Her was growing, and it was long platinum blonde with curls at the end.  Her hair was very fine, but it was healthy.  Her appetite was increasing, but there were certain things she would not touch, probably due to texture or feel.  She would give quick hugs, and sometimes we could kiss her.  She was improving all the time, making big and small leaps in progress.

Today Riley is a little personality.  She is still withdrawn and still has her “quirks” – but daily she reminds us of how far she’s come – and how much farther she is destined to go. I still struggle with what I’ve done right, or wrong – and with my own self-blame…but nothing cheers me like a hug and a kiss from my own mini-me. My Alligator. My Riley.

*********

I apologize for the delay in the latest installment from Archie!!  I kept forgetting to edit it.  This was the final installment in the ‘Real Men Don’t Cry’ Portion.  I’m hoping to keep nudging the hubs to make posts on a variety of subjects – because I know he has a lot more to say!  So Fatherhood Fridays are far from over!!

The things we take for granted in our lives is amazing.   We forget to stop and see the small miracles that occur every day, we just look for the big ones.  I’m guilty of that when it comes to Riley.  I thought she would grow and advance just like every other child.  I didn’t want for her to have the problems I had to go through.   

We went to the geneticist for over a year before we got a diagnosis. He wanted to observe her and watch how she grew before he said anything definitive. 

After so many visits he was finally ready to tell us.  The diagnosis was autism, specifically pervasive developmental disorder (PDD-NOS).  My wife and I were stunned.  It didn’t change how much we loved her, looked at her, or treated her - but I felt responsible.  I was the one with all the problems growing up, and the lingering ones as an adult.  My wife had a typical childhood, no major problems to speak of. Her first child was neurotypical.  No, if Riley was ill, it was because of me and my blasted genetics.

Riley was still not talking, or smiling much.  But she was playing “outside” of herself.  Any situation where a lot of people were involved made her extremely uncomfortable, often resulting in a “meltdown” as we called them.  She did not like for anyone to initiate touching or hold her unless it was herself.  We saw a little girl locked inside herself, and we had to find the keys. 

As Molly grew, we were enrolled in an assistance program that helped us find and meet her special needs.  She met with various therapists each week to help her reach goals that were set forth to bring her development up to speed.  She also was able to attend a special needs pre-pre-school , which she started out very withdrawn, but ended up comfortable and playing/learning/chatting with the other kids and teachers.  My Riley was coming around, and I couldn’t have been prouder.

Riley began to talk, she had been saying some words, but now she was really talking.  It was very difficult to understand her sometimes, at least for me.  My wife spent all day with her and it was easier for her to pick up Riley’s speech.  But she was improving.  Her weight was always on the low side, but her height was average to tall.  Her was growing, and it was long platinum blonde with curls at the end.  Her hair was very fine, but it was healthy.  Her appetite was increasing, but there were certain things she would not touch, probably due to texture or feel.  She would give quick hugs, and sometimes we could kiss her.  She was improving all the time, making big and small leaps in progress.

Today Riley is a little personality.  She is still withdrawn and still has her “quirks” – but daily she reminds us of how far she’s come – and how much farther she is destined to go. I still struggle with what I’ve done right, or wrong – and with my own self-blame…but nothing cheers me like a hug and a kiss from my own mini-me. My Alligator. My Riley.

*********

I apologize for the delay in the latest installment from Archie!!  I kept forgetting to edit it.  This was the final installment in the ‘Real Men Don’t Cry’ Portion.  I’m hoping to keep nudging the hubs to make posts on a variety of subjects – because I know he has a lot more to say!  So Fatherhood Fridays are far from over!!

I spent the better part of the weekend (from Thursday to Sunday) sleeping.  I was sick, sick, sick…and have just now started feeling better.  The worst part of being sick was having two sickies with me (*thing 1 and thing 2*) that were just as miserable as I was. 

Riley recovered fast, but it clung to my Angel like  glue. The cough lingered and she was put on antibiotics (drugs…woohoo).  She recovered a bit, but continued to cough.  And cough. And cough – waking up at nights.  It wasn’t continuous – just lingering. So, as luck would have it we had our regularly scheduled visit to the CF clinic yesterday. Her lung functions have gone down, so the pulm has extended and increased her antibiotics….and added steroids. 

So after all of this, I’m finally back.  Still keeping an eye on my baby – but I’m here!  Sorry I was so MIA.  Whateer this summer cold was made of, it kicked my ass!

And the Rock and Roll?

Well, it’s RIGHT HERE!!