Nea's Workin' Wednesdays!

What an awesome day in therapy today!!  "A" put Nea on lots of bouncing balls of different shapes and sizes.  Honestly, Nea wasn't having any of that.  She wasn't super thrilled with it, but tolerated it and hung on to "A"'s blanket snugged right up to her for a little bit of comfort.  Even as "un-thrilled" as she was with that ball bouncing, she never came to me (sitting in the corner) for reassurance.  That's a big step for Nea, because usually in OT there's just so much going on and so much overloading of her nervous system, that she comes to me  several times and asks for the paci.  And usually she's got a horrified look on her face!  Today was much better and I think she's relationship building with "A".  She also did great eye contact, which really impressed the heck out of both of us!

We then moved to the ball pit.  Did I ever talk about the ball pit before?  This thing was Nea's nemesis during her OT eval.  She screamed and arched and essentially had a total meltdown when she was in the ball pit.  "A" got in with her, and began covering her with the balls.  Nea cooed, purred and buried her face down in them. The more balls she was covered with, the more content she seemed.  It must have been like a beanbag chair X1000!

Look at that big smile!! AND she's smiling at "A"!

Jumping with help!

This might not look like a big deal, but trust me, it really is.  A ball pit can awaken the senses or calm them down, depending on the kid.  For Nea,  it helps her neuro system sorta reorganize itself.  A ball pit is visually stimulating, requires her to use her core to climb out of it and feels realllly good to her!  We may see if Santa has a ball pit around the North Pole and get a smaller version that can be set up in her room!

After the ball pit, it was time for even more relaxation (remember, we're trying to get ready for Speech therapy too....which is right after OT.  This girls dance card is busy on Wednesday's!).

Ahhh, the scooter, with the beanbag, with the LadyBug squish blanket on top.  She did 3 laps and was a very happy camper.  This is one of those sensory integration things and quite honestly, I don't have all the reasons down as to why this works so well for her.

After the ball pit, and the beanbag/scooter ride, Nea was ready for this.....

That's right folks!!  A tricycle!!  Oh my gosh, my little girl is on a tricycle!!!  Now it's a very special kind that her feet get velcroed onto the pedals, there is a safety strap on the seat and the handlebars pedal as well.  She figured it out, all on her own.  She did 3 laps around the gym with a smile on her face and I'm pretty sure a song in her heart.  The coordination was phenomenal!  "A" was impressed.  Very impressed!  She was so impressed with how well she did with it, that she is requesting one for Nea.  These trykes are very expensive (think $500.00!) and the company tries to find a sponsor who will get the tryke for the child.  We have to send in a picture and "all about me" info sheet.  It's a wonderful opportunity and we hope to get a tryke soon!

Speech therapy went just as well!  She's really beginning to grasp the art of communication and understanding how communicating can gain her benefits.  Children with Autism are not motivated or influenced by social rewards.  Finding a motivator for communication is key so that then we can teach her words and sentences by things she chooses, not just something we choose for her.  If I've learned nothing else, it's how complex language really is!

We hope to incorporate the PECS  (Picture Exchange Communication System) and "D" is pulling together the words boards while her Poppa and I try to understand the system and how it works exactly.  It's a learning process for everyone!

Part of the ritual of going to therapy at Pedi Rehab is heading to Jamba Juice when we're all done.  We've been doing it since day one and she just believes its just part of the whole thing.  It works well I think because we can work on a few social things while we sit in there.  Kids and grown-ups come in there a lot, so we work on saying "Hi, friend" to everyone that walks in the door.  So far, she still hides her eyes or turns her back, but we keep working!

Strawberries Wild at Jambe Juice!

Teethbrushing

So this is something we've been working on for about a week now.  Reading through some of my resources, it seems that dental care gets lost along the way.  There are so many therapies and so many goals on the "to do" list, it doesn't seem worth a battle to get a toothbrush in a kids mouth.  Trust me, for some kids this is a big issue.  Some kids can have such a horrible oral aversion, that the teeth brushing thing is more than anyone can handle.

Nea's had a toothbrush since she was 9 months old.  I wanted to start with her just getting used to having a toothbrush in her mouth.  I let her explore with it, play with it and essentially handle it as much as she wanted.  I was trying to desensitize her to it, so it wouldn't always be regarded as a "foreign object" and just piss her off.

I tried to make teeth brushing a pleasant experience.
However, as time has gone on the teeth brushing thing became more and more of an issue.  Until essentially she wanted nothing to do with it.

That doesn't work very well, because now she's eating big person food and Grandma gives you marshmallows for breakfast at her house!  I was a little baffled as to how to move through this teeth brushing thing.

Now that I understand that this may have been a sensory issue for Nea, I talked to her therapists.  They had great ideas for me!  The first one was to get her an electronic toothbrush.  I would have never thought of this on my own.  I would have never bought one of these brushes for Nea at 2 years old!  But if we remember that Nea requires LOTS of sensory information to process it, a vibrating toothbrush makes a whole lotta sense.  I wonder what the regular toothbrush felt like?  An annoying fly?  Tiny pinpricks?  Who knows.

Now that I figured out which brush, I needed to recreate the habit for her and essentially start all over with this toothbrush thing.  It was also time to switch to a fluoride toothpaste now that she's 2 AND introduce the whole swish and spit thing... ..... good grief my head was spinning!  (yes, I know, I did it to myself!)

For a few days I have been putting a hair scrunchie on her arm about 5 min before teeth brushing (with the vibrating toothbrush) and that seemed to go over fairly well.  TAP suggested standing behind her, and allowing her to see in a mirror.  All of these things I incorporated, and overall I was pleased.

Today, I did something a little different and actually held on to her.  I just gave her a big hug while we brushed teeth.   We didn't make it a full 2 minutes ( I wasn't tempting fate!), but she did better than she ever has!

She's hesitant at first.  Notice that I'm not restraining her.  I'm just hugging her.  She could get her arms out if she wanted, or she could even get down.  So it's a firm hug, not restraining.  Ha...it's funny even as I type it!  And of course, a friend always helps.  In this case, it's Tigger.

This is great mouth opening!  She's watching herself in the mirror the whole time.  I even had a few smiles

I was alright with scowls, but we just kept working and she would open her mouth right back up.  

The swish and spit is a new skill as well.  The swish part isn't that great....but the spit part is coming along just fine!  (hahah)

Some of you may be reading this thinking, "What the heck??  Why are we hearing about a teethbrushing session??"  Well, you are reading this because I thought it was important to share....in case another parent of a child with autism is looking for information.

Sharing information and tips is important for parents!

It Could Be....

This has been a very reflective week for me.  More and more information means more and more assimilation of information and that takes time.  It's a process.  But it's a process that's not easily done in a group (at least not for me) and so as I said...I've been very reflective.

One of the things I did this past week is watch the movie Temple Grandin.  This was an HBO film that came out last year and starred Clare Daines.  Clare did such an amazing job in the movie that she won all sorts of awards for her portrayal of Temple.  If you haven't seen it, I recommend it.  If you've seen it already (and many have), it's always worth a second look.

So why did this movie touch me to the very core?  That's one of the things I've been reflecting on so much and working to be able to articulate.  I think there is going to be a time in the future that I'm going to want to remember these thoughts.

Temple is an extraordinary woman who achieved amazing things in her life.  Let's face it, whether you are autistic or you are neurotypical......her achievements should not go un-noticed by anyone.  I think this is one of the things that bothers me about this story is that it didn't seem to get a lot of "press & media."  Even with such superb acting and the story itself, it should have really hit the airwaves....and it didn't.  I'm not sure what that says exactly but it leaves an uneasy feeling in me.

As I said, Temple is a wonderfully brilliant woman who had/has much to offer the world.  And the story truly is about her and her life.  But what really touched me were the people around her that supported her and encouraged her.  Oh don't misunderstand she had more than her fair share of bullying (in childhood and adult life), name calling, belittling, etc. to last several thousand lifetimes.  But there were folks along the way that gave her a chance, that listened to her and that pushed her just a little bit to do the thing she was scared of the most.

If I gain nothing else from that movie it was about support, encouragement, and belief.  At least that's what it was for me.  It gave me a brief glimpse into the world of an autistic child and it gave me hope.  Do I think that every child who has autism will obtain their doctorate?  No, I don't.  But it's a great lesson in not selling these kids short and helping them to bloom in their own potential.  WHATEVER that may be.  It could be your doctorate, it could be living on your own, it could be having a job, it could be being able to dress yourself, it could be driving, it could be stacking items.....it could be.  "It could be" is my new phrase right now that I want to incorporate in our lives.

I took this movie to my Mom's house this weekend and watched it with her.  First, there's just nothing like going home to Mom's when you've had a really stressful, brain-straining week.  Second, no one (aside from Nea's Poppa) loves your kid like you.  Grandma....is a realllly close 2nd.



















Nea has just "come into" a relationship with Grandma these past 3-4 months.  Once she even ran to greet her with a hello (we all almost fell over) and since that time she's been snuggly and lets Grandma get closer than she's ever let anyone (besides her parents).  Grandma's in heaven of course and I'm happy to see Nea nurture a new relationship.  I should also add here that my nephew has a connection with Nea that the rest of us don't have.  Not even her Poppa and I.  He's cared for and adored her since she was a tiny infant, and he's never stopped.  Somehow on some ethereal level that only kids understand.....their hearts stay very connected.


Nea had a fixation on the snowbabies and angels all weekend.  The girl loves pairs.  Seriously, for awhile I found things around my house in pairs all the time.  She stares and stares at the faces and gets lost there for  quite awhile.  I wish I could see what she sees when she's looking at them.


At Grandma's house, you get to sit in the sink.  Grandma seems to understand that being all curled up in the sink makes a girl feel safe, secure and provides a little sensory input that relaxes.  The beauty is that Grandma doesn't care, she just lets you be you.

As you can see, Grandma's house is a place where you can let your hair down and just have fun.  With all the therapy and all the work Nea has to do every day, having these special times are really important to me.  We all need to find balance between work and play, and our kids are no different.  There aren't many places you can go, sit in the sink, hold precious porcelain items, and splash water in the sink with your feet....except at Grandma's.

We LOVE YOU GRANDMA!!!!!  Thank you for letting us come on short notice, and letting us hang out at your house and for always being our biggest fan!!

It could be.

It could be.

It could be.

It could be.

Tears in Therapy

Don't worry, they weren't Nea's, they were mine.

Let me start from the beginning.

We had a team meeting today with all of Nea's therapists and myself to review goals, set new goals and make sure we were all moving in the same direction.  I asked for the meeting soon after we got the Autism diagnosis because I just needed to assure myself that everyone was coming from an "A-game" perspective.

It was a good meeting.  We are really fortunate to have great services in this community and I do not take it for granted.  All 3 therapists (OT, speech and Developmental) along with our case worker of EI shared and provided tons of information.  As a person who works in the medical field, I cannot express enough how important information exchange is in so many cases.  Certainly, having a kiddo with special needs deserves the right amount of attention and focus.

This was my first lesson in advocacy.   That's good.  I need these lessons in little intervals along the way.

One of the things that I brought up was my concerns about this picture below:

See that hair clip on her arm?  She dug in my purse, searching for that I can only presume.  (I can't say I know for sure.)  And she kept that on her arm for a full 25-30 minutes.  She became really agitated when I tried to take it off and sat watching a Pooh movie.   After about a half hour I couldn't watch it any longer and took the clip away.  This is the result:

You can imagine my concern.  So I shared these photos today in our meeting.  "A" (the OT) was VERY glad to have the information.

"She's telling us that she needs deep pressure to stay focused and calm."

We discussed at length the things that I can do at home so she can get that same outcome, without nasty marks.  So we came up with a plan....
1)  Get her wrist weights about 2lbs each.
2)  Use hair bands (scrunchies) to put on her arms (she has actually requested this in the past)
3)  Tighter clothes
4)  Get her a backpack and load about 4lbs of toys and books in it and have her carry around when we go to store, appointments, etc.

We then talked about communication and all therapists felt that getting a picture board for her was going to be very useful and would help her to continue to meet goals.  So a picture board is in progress, the first one for the fridge with pics on it of yogurt, cottage cheese, milk, juice and cheese.  (We like dairy products at our house!)  We'll make one of her favorite things like Tigger, the paci, trains, the iPad, etc.  Then we'll also do picture boards for activities like teeth brushing, bedtime, going to the store, etc.  We need Nea to learn the art of communication....if she says the word, GREAT!, if she signs it, GREAT!, if she points to a picture, GREAT!  The point is, she needs to understand that communication is really important.

TAP is an organization that networks resources for families with kids on the spectrum.  It's one of the most robust systems nationwide.  And really, there is more information in their website than I think I'll ever be able to use!  One of the things we talked about is getting Nea in a playgroup through TAP, which apparently has a waiting list and they recommended I put her on it now.

Whew, okay.  At this point....with everything we discussed in detail, trying to formulate a plan in my head, making sure I understand thoroughly as possible.....

....there were tears.

Of course everyone was more than understanding and I appreciated all the kind words.  Of course I had to get some things done when I got home so I could clear my head....

1)  Make appointment with a dentist for Nea (there is no putting that off any more and it's really important that she gets involved early.  Had good recommendation from the therapists).
2)  Talk with the Aquatic Director at the Y.  Should Nea be in the almost 3 class or a special needs class.  Impulse control is hard for her, and sitting on the side of the pool waiting for her turn is really difficult unless I'm in the pool with her.  So which should she do?  ( I left a message)
3)  Purchased 8 UnderArmour shirts online so she can wear under clothes.  They will provide compression and tightness for her.
4) Downloaded apps for colors and begin teaching for social cues.  (ooh boy, teaching social cues is going to be difficult!)

*Whew!* Okay....that felt better.  (I mean let's face it, shopping always makes me feel better)

As overwhelming as today was, there was a bright spot when I began to learn about Temple Grandin.  If you don't know who she is....University of Google is your friend.

I need a little inspiration these days, and I'm planning to watch that movie this weekend.

Sleep.....

......oh how I cherish it.  

When we first brought Nea home, it was quite a struggle to get used to that whole newborn routine.  Up for 2hrs, sleep for 2 hrs, up for 1hr, sleep for 3 hrs, up for 1.5hrs, sleep for 1 hr.  At one point I really thought I might go insane.  Humans aren't meant to sleep like that.  And lack of sleep really does wonky things to your brain, your perceptions and quite frankly, you're reality.   I think that's why when you see a new mom and you ask her how she's doing, she responds with a wide-eyed look of "Oh it's fantastic!"  She has enough sense about her to know that she's not supposed to say, "Holy Crap!  This is insanity!  I think I need psychiatric help!"  I'm convinced it's the reason that Moms don't seek out help for post-partum depression.....she just is not living in this reality!

Nea was any typical newborn.  And as she got older, she started to settle into bigger sleeping chunks for which I was very grateful.  Although we've all had that "I've-been-asleep-for-4hrs-somethings-wrong-my-baby's-dead" panic attack at least once or twice!  

However, we struggled with Nea's sleeping on any schedule even after she was a year old.  Everyone kept telling me, "get her on a schedule", "read books so she can wind down", "make her get in bed by 7:30", "establish a schedule", " make her tired."

And I went back to "insanity" really quickly.  No matter how hard we tried.  No matter how many routines I created.  No matter how long I did or didn't let her nap during the day....the girl's sleep schedule was wonky.   She would sleep 5-6hour chunks, wake up for 3-5 hours, then sleep another 6-8 hour chunk.  She was getting 12hours a day, but it wasn't all together.

And I couldn't figure out why, and everyone's well meaning advice was making me feel really bad about it all. 

Eventually, the routine we settled into was...."no routine"  I can't explain it, it just was what it was.  

Well, it turns out, sleeping is one of those "fine print, fun things" that goes along with having autism.  Many autistic kids have sleeping disorders.  Either kids have trouble falling asleep, or they can't stay asleep when they do.  There are a lot of theories and research that's going on as to why this happens.  Some believe that the brain is just in "fast-forward" mode all the time and can't really shut off.  Some think that many of these kids don't recognize social cues and therefore don't understand what a "bedtime routine" means or what happens at the end of it.  Some research has shown that these kids are missing melatonin in their brains.  Melatonin is released when light is diminished, which is the body's internal trigger that it's time to sleep.  

The fact is, no one really knows.  Maybe it's a combination of everything!  

These kids are the crashers.  They go, they go, they run they play.....and then you find them asleep in a closet.  Essentially the body just does a  "sorry sweetie, we gotta reboot" and sleep takes over!  

We've tried many things as our friends suggested.  We've even had the rule "no sleeping past 5p.m." and then woke her up.  Let me set the stage for you.....

Child who has difficulty communicating, who is exhausted, awakened from a sound sleep.  Right, you get the picture.  It's not pretty.  In fact, it's so not pretty it almost seems like some sort of torture.  I think water-boarding would be more humane than when we were doing that for about a week!

Sleep is one of those things that the Occupational Therapist is helping with.   One of the things we noticed on vacation is that Nea DID sleep for 10-12 hours at a time.   The therapist was very intrigued by that so we discussed in detail.  Here's what we came up with:

• Air conditioning unit was on
• Room was "chilly" where you wanted to snuggle under blankets
• Big, heavy comforter
• Big, fluffy pillows
• Room was pitch black

Both the OT and Dr. Twyman recommend that we "recreate" the hotel room environment to see if that doesn't help get her to sleep at longer intervals.   We already had a window unit in the bedroom so we had the white noise and it was chilly.  I cover her up with a heavier blanket (some of these kids need a weighted blanket-it's that whole sensory perception thing) and I bought new pillows that are pretty enveloping and fluffy.  The only thing we haven't done is the black out curtains.

I have to say that for about a week or so now it's been very good.  She's been sleeping about 8-10hrs at a time which is a great improvement!  

This morning however, I was up at 4am with her.  For reasons I have yet to figure out, she was up and talking to me at 4am.  I just ignored her, put blankets on her and snuggled her.  But she was not having it....and we finally got out of bed at 4:30.  We came downstairs, did a diaper change, she played with some trains and then at 6 am she went back upstairs on her own, climbed into bed and slept 2 more hours.

What the hell?  Now I feel like a CSI agent trying to figure out the mystery of what woke her up in the first place....how can I prevent it from happening again....and how did she have the message to go back to bed!? 

Nea at 6:30a.m -putting herself back to bed

If you know someone who has a child with Autism, you might hand them a cup of coffee or a can of Red Bull. They will appreciate the gesture.

The Crab

So, today is one of those days where the tears just sorta flow from time to time.

I know every parent has the "can I do this?" moments, but they really seemed to hit me today.

"What if I miss something, like some opportunity for her?"

"Can I make the right choices for her?"

"How do I not get swept up in the business of it all?"

"Am I starting in the right places?  Am I reading the right things?

"What happens on days she needs me the most, and I'm at my worst?"


Now, before anyone picks up the phone and calls me worried sick (Mom, this means you), I really am okay.  I'm just at that place where I think I have to "sit with it" for a little bit.  And I think for me, that's how I work through many things.  I suppose it's the Crab in me (my astrological sign is Cancer).  I pull myself into my hard, tough shell and protect all my squishy soft insides.  Sometimes I melt into myself...much like today.  But  it doesn't last long, and I don't wallow.  I just have to ride the waves and wait until I come out on the other beach.

Admittedly I may have overwhelmed myself today getting information.  I am in the process of joining the Autism Society of America-Central IL chapter.  The site is full of information and you can easily get lost in it.

I also started reviewing stuff for school (coming up in April) and I think THAT is what probably threw me over the edge.  There's all kinds of things to think about like IEP's (which would be Nea's education plan) and I cannot even begin to fathom her in a classroom environment.  I think what I really need to do, is go and watch a classroom.

Now the good news for me is that the Early Learning Center is just down the road, I've heard amazing things and I even know a teacher there as well as the principal.  (although the principal probably doesn't remember me at all).  I sat and reviewed their website, read all of last years newsletters and scanned through their therapists and teachers.  New therapists?  I can't imagine!  The thought of her going to school is just freaking me out!

The good news for us is that I am blessed to know a whole lot of teachers.  I mean a WHOLE lot.  (Hi Meg, Heather, Liz, Stacey, Kristinah, Kathy, Shelly, Barb, Heather2, Mimi) And I know a lot of folks who specialize in childhood development ( Hi Vanessa, Ann, Dana).  Everyone has sent me a note of encouragement and support.  Truly we are surrounded by amazing people!  I just need to keep remembering that!

On one of the websites I read this quote that I really liked.....

"It takes a village to raise a child. And when the child has special needs, it sometimes takes a village, the neighboring village, and a tribe of warriors."  

Boy howdy!

And my biggest fear of all....

What if *I* limit her potential?  What if I end up being the biggest obstacle because of preconceived notions that I already bring to the table?  I really am trying to be acutely aware of that and make sure that I keep myself in check as we continue on this journey.

In other news.....

Nea's therapy was good today.  "J"'s note reads:

"Nea did so well talking today!  Even attempted to repeat some word combinations (teddy bear, kitty cat, puppy dog, etc.).  Did great working with colors and animal sounds.  Very wound up/energetic today but still focused."  

Really?  Still focused??  That's amazing!  That makes me happy for her!

So...the girl had a great day....Momma was just hangin on.

I guess we keep the world in balance!

Just an Ordinary Day

Wednesday, Thursday and Friday this week are full of therapies.  Usually developmental therapy is on Monday and Fridays, but our therapist was sick, so today was a make-up day.  That means back to back days for all her therapies.  We're usually on a Monday-Wednesday-Friday schedule, which is less taxing!

Developmental therapy comes to the house and today they provided this feedback...

"Nea came right over to play and did a nice job using words; both repeating and naming."

Woohoo!!!

That's some big steps for my girl.  It's great that Nea walked over all on her own to begin playing with "J".  (For the record I'm using all these therapists initials because I haven't talked to them about their names in a public blog.  You won't see any therapy pics either until I talk to them.)

What I'm noticing now is that the therapists are doing more "pushing" with Nea and changing goals.  That's also a good thing.  They've spent the better part of 3 months building a relationship with her and gaining her trust.  Don't get me wrong, they were working and it all served a purpose.  But now, I get the impression that  things are going to shift ever so slightly to take Nea to the next level.  "D" said to me, "I'm going to start pushing her a little more.  She's going to get frustrated a little more."  And I also note in the developmental therapist's note today

"....her frustration level was low and we had to push to complete a few tasks."

Pushing is okay.  Pushing allows for growth. Meltdown into oblivion gets no one anything.  It's a fine line we walk!

I just had this conversation with my Mom this evening.  We work really hard to PREVENT the meltdown.  Because in reality, once we get to DefCon 10.....it's all over anyway.  This is why the sign language is very important.  There is power in being able to communicate.  Nea's surroundings and sensory issues don't allow her much power at all.  And damn, it can be frustrating for her!  So being able to communicate with us is paramount in helping her feel in control of her environment.  She has "help" and "please" down very well.  We are working on the sign for "yes" and "no."  Even though she can say no, being able to connect words with a sign will help us in the future.  I'm not naive enough to think a meltdown will never happen (because, heck even without the Autism, the fact remains that she is 2!), but understanding how we get there in the first place is my responsibility as her parent.

Someone asked me this question, and I thought about it for a long time.

"Why are we seeing more Autism?"

In the things that I've read, it doesn't seem like there is a rise but more so a better understanding.  CNN put out this report in April to discuss some of the most recent findings.  There is some concern about the data collection pieces, but the moral of the story is..."if it is...then let's figure out why" and "regardless if it is or isn't these families still need services early."

If you are reading this, and you think your child may be showing signs I implore you to seek out information.  Autism Speaks has this screening tool available to parents and caregivers that you can do right on line.  You can answer the questions and then discuss them with your physician.  A developmental pediatrician is the expert in this field and can do detailed testing to determine if your child has Autism.  The VERY next thing out of his/her mouth is what services are available to you.

Of this I am certain.....  Of everything I've read and reviewed, the one single thing that is common in ALL discussions is....

"the earlier the services, the better the outcome"

Therapy

.....is no joke.  Seriously, it's not for the timid.

Nea has therapy 4 hours a week.  That doesn't seem like much, but trust me when I tell you...that's a lot for a 2 year old.  We also have things we do at home....which means Nea is spending about 8 hours a week doing some sort of therapy or therapy play.  And just for added fun, we are sprinkling sensory integration in the mix of it all!

Let me bring you up to speed on this sensory perception issue that many (if not most) Autistic kids have.  Stanley Greenspan, author of the book The Challenging Child, describes sensory perception disorders in this way.....

"Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else." 

Now imagine trying to drive this car and someone is wanting you to practice speech!  Yah, okay that would be maddening.  We need to get this sensory thing under control so Nea can spend time with better concentration and better able to learn!

One of the first things that A did was try to get her on a beanbag chair.  Pffft....Nea flipped out.  Total meltdown city.  We went from "happy" to "DefCon 6" in like 20 sec.  I was shocked.  A beanbag chair? Seriously?  I went and bought one that very day!  We are working on this thing for sure!

And, she loves it now!  So what does it do?   The beanbag chair envelops her.....it provides sensory input to her, it calms her and relaxes her.   All those little beans provide thousands of little pressure points and allow her brain a few moments to think clearly (because it's not trying to stay on the road constantly).  Now she uses the beanbag chair as a crash pad.  When she's upset, when she's frustrated, when she can't find words....she will run, full throttle and fling herself face first into that bean bag chair.

It's funny, we must have picked up on subtle signs earlier...... Does anyone remember when I said this on facebook last year?

"We got Nea a dogbed, she kept trying to get in the one for the dogs, and we found she just sleeps better"  That dogbed had a sheepskin top....  She always slept very well on it! We were doing sensory integration and we didn't even know it!

Today in OT, it was all about balls.  "A" had probably 20 different balls and they each had a different texture.  Some were pokey, fuzzy, soft, tickley, squishy, etc.  "A" took a big yellow ball and squished it against Nea while Nea played on the floor.  At first Nea was very confused, and a bit startled.  But then I watched her melt into the floor as "A"" essentially gave her a massage running that big yellow ball up and down her body.  When A would stop, Nea would turn her head and pat towards her back....essentially asking for more.  "A" was super pleased.  Me, I just sat in the cornered baffled by it all!  The two of them had some sort of give and take thing going on that I was confuttled to understand!

OT people have the strangest toys.  They have the most intriguing and yet scary stuff.  "A's" room is full of swings, and textures and boxes and jump toys and everything in between.  So far after every session "A" pulls Nea and "D" (her speech therapist she loves) around on a scooter, with the beanbag chair on top of them.  Nea stresses at first....but eventually she gets into the rhythm of it all.  So she gets some sensory integration while working on her core (staying balanced on the scooter) in the safety of D's lap.

Needless to say we have all kinds of new balls at our house now!  The koosh ball was a BIG hit!  She buried her face in it several times, shaking and shivering as she was doing it.  The big orange ball (A's was yellow) was also a great thing.  She actually got on her tummy and rolled herself back and forth across the ball.  Hell, the girl knows what she's doing long before I can even figure it out!!



This weeks quirk:  Nea's perception of pain is not that great.  So I found her using my hairclips pinched on her skin.  OUUCH!  She was trying to get some sort of sensory input, but that is not going to work.  We'll have to find something else!

The Beginning

So, if I'm going to share this journey with you...I had best get you caught up.

As I've talked about before, we were clued in that there might be a problem around 18-20 months.  The major thing of course was that she lost a pretty sizable vocabulary.  She had 50 words, and by her 2nd birthday she was down to less than 10.  Our pediatrician didn't waste any time, listened to us and made a referral to speech therapy for eval.

At first blush, it was felt that Nea had an apraxia of speech issue.  Certainly there were motor issues that clued the therapist in about a problem.  The therapist also made a referral to Early Intervention.  Early Intervention recommended a developmental assessment as well.  Eventually we all met and Nea tested out at  a 15-18 month age.  Both therapists felt that services were needed weekly (intensely in the case of developmental therapy) and that OT should eval as well.  Gosh, these people are serious.  I remember thinking "We'll have her up and running and caught up in no time!"

Okay, sidebar.  Have you ever seen on OT eval?  Seriously, it's the craziest thing I've ever watched.  The gal had Nea swinging side to side and spinning in a tire swing suspended from the ceiling.  She hung her upside down over a ball pit.  She put her on an obstacle course and made loud noises behind her.  It was crazy!  she almost called forth my Mamma Bear!

Poor Nea looked like someone ran her over, backed up and ran over her again!  The girl was stressed like I've never seen her!  My brain was swimming.....   Of course I was thinking, "You CAN'T be serious!?  That's not an eval!  Hell, *I* would be upset if you did those things to me!"  But A (the OT therapist) was very kind and patient and a great educator....teaching me about sensory perception issues.

D (the speech therapist) sent me an email before our next session and said, "I need to talk to you."  Not really words any parent wants to hear.  She told me that based on what she had been observing (she had seen Nea almost for a month at this point) and along with the OT eval, that she felt Nea might have Autism.  She suggested I see a developmental pediatrician for a confirmed eval and diagnosis.

What?

I'm sorry, What???

And then I began to put the pieces together.  All the little "quirks" that made Nea so, well, Nea-ish are also the things that put her on the ASD spectrum.  Her speech delays, her jargon speech, her lack of eye contact, her poor play schemes, her lack of pretend play, her lack of not sharing joint attention, her preoccupation with lining up cars and trains, her "getting lost" in wheel movement, her playing with everything at eye level, her hoarding toys constantly....and on and on it went.   We knew.

We went to St. Louis for an eval with Dr. Twyman and her team.  Wonderful woman, amazing team, very lovely people.  I trusted their expertise and their ability to help us understand things a whole lot better.  They could start to see some improvement in some of her "quirks" but she still had them along with a delay.  Yes, in fact she has Autism.

*deep breath*

This time I wasn't shocked.  This time I wasn't freaking out.  This time I was ready to get this journey started.   Educating myself was going to be number 1, and that takes time.

I have to say one of the things that is starting to drive me a little batty is...."...oh but she's high functioning right?"  And I have to say I've found limited information of what the "Autism scale" looks like.  I know it's a spectrum, but I don't think it's a true scale.  It's starting to feel like society has to assign those particular attributes.  Unfortunately we are still living in a world that we believe Autism "looks" a certain way.  I don't think that's true.  In fact, if you saw my girl at the store, you probably can't tell.

Unless of course, there's a meltdown.  Then all bets are off!

Dr. Twyman explained it like this...."She's bright, she has potential...but the Autism is getting in her way to progress."  Okay, that makes sense, that helps me.  She HAS Autism, not she IS Autism.  Makes a difference doesn't it?

What if she HAD Diabetes?  Diabetes doesn't define a person, it's just a disease they have.  Yes, they have to make certain arrangements to help manage the disease....but it doesn't dictate who they are or who they can become.

I'm going the same route with Autism.  It is something we are going to have to manage for her life.  Some things we'll do better, some things we won't.  But it doesn't limit her potential.

A new World

I have been debating for days about writing in this blog.  There are many things going on in our house these days and quite frankly it's been overwhelming.  The reason I've debated is because I wasn't sure how much of "me" I wanted to put out there.

I'm on facebook a lot.  I put posts up frequently, add tons of pictures and comment on lots of pages.  But I really keep it light, keep it airy and keep it "surfacey."  Oh sure I may get hot under the collar now and again, I may go off on something that really is bugging me.  But for the most part, I don't air dirty laundry and I don't share much of me.

When Nea was diagnosed as having Autism, the first place I went to was the internet.  Of course there are great web sites like Autism Speaks , and Autism Society of America-Central IL Chapter but what I really wanted was to read a blog.  I wanted to read the point of view from a parent.  I wanted to hear what a Mom had to say when she realized her child was faced with struggles, and some she never dreamed about.  I wanted to know what these parents did, how these children thrived, how to be an advocate for my own child.  The websites were full of great information, but I wanted the story.  For it's in the story that I gain a deeper understanding.

And so, I have finally decided to share our story.  It will serve 3 purposes for us.

1)  Writing is cathartic for me, and it's a nice way for me to de-stress.
2)  Keeping some sort of "diary" that Nea can read when she gets older, may be a wonderful thing for her.  I've long stopped writing in her baby book!
3)  There may be another Mom out there....looking to find a story.

So yes, I will share.  And yes, it may be raw.  And yes, I will be frustrated.   And yes, I will have tears.  But this is my journey as a parent, and my child deserves the very best of me.  All of me.  You, dear reader, will get the same.

So, our world changed.  It looks very different now.  I would like to tell you that I accepted it all with grace and poise, but in reality, I was sad on the inside.  I was just sad that I couldn't change it, I couldn't protect her from it, and there was nothing I could have done to stop it.  I suppose it's one of many lessons for me when it comes to the "not in your control" aisle.

I've worked with special needs kids a lot.  One of the most profound things I've ever read was the story I am posting below.  When I read it again, now, with different eyes and different experiences I was more than blown away.

 "I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."
~~ Emily Perl Kingsley 1987

I wept.  I wept for a lot of reasons.  Part of it was guilt.  Okay, a large part of it was guilt.  But I had to come to terms with the fact that I was pissed off.  I'm not going to lie, I was ready to make a banner that read

HOLLAND SUCKS!!

I had already had some of these feelings when dealing with infertility for so damn long.  But that poem gave me the opportunity to be honest with myself and to really take a step back.  And then the switch clicked.

It's not about me.  It's about her.  It's about my responsibility to her and helping her make her way in this world.  It's about making sure that I speak for her until she's ready to speak on her own.  It's about making sure that we celebrate every single step of this journey we are on.

And with that....I was ready to move forward.