What's going on with Autism......

I've spent just a few months in the Autistic community.  And as I begin to understand my surroundings in this new world, try to gather information and begin networking with other parents, a few things are really starting to bother me.

I've already eluded to my frustration with the national AutismSpeaks group and some of their stances on "give us money so we can cure Autism."  That rhetoric does nothing to promote acceptance of children and adults who are on the spectrum.  I'm not talking about "tolerance" because I am really starting to despise that word.  ( I don't like "religious tolerance" either, those of you that know me are well aware).  As a general rule I "tolerate" red lights when driving.  I "tolerate" the fact that my car is out of service when I have to take it in for an oil change.  I "tolerate"  the dental hygienist putting that icky stuff on my teeth.  And I'll "tolerate" standing in line to get into a bathroom.  As a society must we really "tolerate" folks on the spectrum or how about we just accept them?  Acceptance is meeting them where they are.  Not "halfway" ....where they are.

Okay, I digress.

The point is I'm finding it more and more disheartening that some of these big organizations are not really moving the community of Autism forward, but seem to be dividing us more and more.

The history of how we got here is reviewed in a a blog post written by Michael John Carley.  It's a lengthy post but in short it's a review of how we are destroying each other from the inside out.  He talks about survivor's guilt ("my kid is verbal, yours is not") and belittling of each others journeys, fears, and pain ("oh, you have it easy, my story is far worse") that it's no wonder we can't move forward on some very important issues.  "Pain is not a competition" should be a wake up call to everyone in the Autistic community and how we treat each other.

If that's not bad enough, we seem to be shutting out the rest of the world.  I cannot tell you how many times I've seen lists and lists....

"The top 3 things the parent of an autistic child needs"
"5 Great steps to spotting a child with Autism"
"20 reasons to teach your children about special needs peers"
"5 places you will never see an autistic child and their family"

....I could go on.

My point is, these things don't really help us.   They segregate us and confuse those who may not be in the Autistic community.  It builds walls and barriers and does not really promote communication.

For example....

35 Things Not to say to the mother of a child with Autism

What? 35?  Oh for heaven's sake!  Should everyone keep a list?  Are we supposed to pull out our lists when engaging in conversation....??

"okay, lemme just check here....looking, looking.....okay, I think I can say this................hi"

I've made this mistake before.  I've gone down this road.  When we were going through infertility treatments I was tossed into a whole different community.  I shared something like "What I need from you and the things you can say to me" list to my friends and family.  I thought I was being helpful.  In reality I was being really stupid.  There was nothing on that list that encouraged conversation.  One of my friends (who I love and adore) said to me, "Uhm....this made me afraid to talk to you.  I didn't know if I would remember what I could say and couldn't say."  Yah, okay lesson learned on that one.

And so the 35 things is just silliness to me.  And it's hard to share those sort of thoughts with my parent peers who are in the Autistic community.  And I get it.  I get why they are angry and frustrated and sometimes feel very alone.  Our big "guru" organization isn't truly helping us, and we are biting at each other inside the community.  And there's no doubt that people have said some VERY hurtful things to parents without meaning to or understanding why.  Handing them this list, will not help anyone gain better understanding....and therefore acceptance.

Look, I'm full circle.

There is however a little nugget of gold on the "Evil 35 list" that is in such small print, it really is a shame.

As for something helpful to say. One mom shared this:

I'd been sitting on the sidewalk with B for about half an hour waiting for a meltdown to subside when a lady walked by and said, "Hang in there, Mom." I felt almost hugged by the inclusion of that statement. I wish I'd gotten to thank her, but I looked up and she was gone.

YES!!  Let's do this!!  This is a far more helpful, respectful and "we're all in this together"  attitude that encourages dialogue and positive ju-ju.  I wish I could convey what goes on in my head when Nea and I are out and about.  Just getting from the car to the front door of a therapy session can be exhausting.  I always have to hold on to her or she'll run.  She has many items such as a weighted animal to carry, a backpack that she now packs with her most cherished items and the fear that any frustration may make her run to a wall and bang her head crying out, "It hurts!"  I've searched the internet thousands of times to find the best bag, the best carry item, the easiest pack to make our walk be as hands free as possible.  Most of the time I give up and put my phone and my keys in my pocket and call it a day.....grabbing Nea by the hand, putting on her backpack and lugging Karen (the 2lb penguin) into therapy.  If even one person walking by said to me, "Hang in there, Mom" I probably would burst into tears at the amount of compassion that warms my heart.

So do me a favor today.  Pay attention to the world around you, and watch parents with their kids.  I don't care if they are on the spectrum or not.  This parenting gig is a hard job and most days we are up to the challenge.  But some days are just damn overwhelming.  Just acknowledging another human being's struggle.....

Well,that's the road to acceptance.

Working with the Medical Team

The discussion of medical procedures seems to come up very frequently in many of the Autism communities that I am in.  Parents of autistic kiddos try to share information as much as possible so that their child can have a good medical experience.  

I have a unique perspective on this issue as I am the parent of an Autistic girl, I am a pediatric nurse of 25+ years and I sedate children routinely for sedation procedures (MRI's, EEG's, bone marrow aspirations, lumbar punctures, etc.).  It's a trifecta of information!!  

If you're reading this and looking for some helpful info, please know that my HIGHEST recommendation is that you discuss any of these tips and tricks with your doctor and medical team.  Remember, YOU are part of that team as well and you know your child best.  That's my little disclaimer.  I'm not the "be all, end all" and have not conducted a double-blinded study.  I'm just a mom with some info that I am happy to share.




I would love to tell you that all medical personnel have endless information on autism and sensory disorders and can easily navigate through most issues.  However, I cannot tell you this at all.  I can tell you for certain we don't have all the information we need, because I was that same nurse.  I have loads of different understandings now because when my daughter was diagnosed, I read and researched everything I could get my hands on.  There was a ton of information I didn't know.  A pediatric nurse for 27 years and I couldn't tell you a thing about sensory processing disorder.  I have a whole different perspective now.  Most of us don't understand the connection between autism and the sensory issues. Because of this, I think it's important that as parents you're able to advocate for kiddos by knowing both languages.

So I've come up with a few tips that I hope will help your kid should they ever require sedation and anesthesia or be in the hospital environment.

• Just know you may have to explain a few things.  Please be patient, many of us are trying to bring our colleagues up to par, but it's going to take some time.  I always start with, "She's a sensory SEEKER, not avoider."  That begins the dialogue and complete understanding that Autism is DIFFERENT in every kid.
• Understand what a Child Life Specialist is and does.  Most Children's Hospitals have them on staff.  And many smaller hospitals are now seeing the benefit of having one.  The Child Life Council can introduce you to these services.  CLS's have many ideas, tips and tricks and they DO understand sensory stimulation and sensory issues.  My own personal nursing practice in pediatrics is not complete if there is not a CLS involved in procedures.
• Every parent (whether your child is neurotypical or autistic) needs to understand that laying down in the "crucifix position" and having a procedure done to you is OVER.  We have stopped doing that since the late 1980's and with damn good reason.  It's terrifying.  Would YOU want that done to you?     There are times that yes indeed what have to hold a kid down to complete a procedure where sedation is not an option (like an IV start, insertion of a foley catheter) but it is a LAST resort, not the first thing done.  And there is much prepping down beforehand with parents as well as with the kiddo.  
• How does that happen?   (see my Child Life Specialist comment).  There are also creams that can be put on the skin to numb it so the poke is not felt (that goes for vaccine shots too).  There are methods to hold a child so it's not so scary.....chest to chest with a parent or cuddled up on Mom's lap.  I know nurse friends that have changed offices of a beloved pediatrician because the nurses told her "no, you can't hold while we do the shot...it's not safe."  That's simply not true.  Spend time understanding what's called "positions of comfort" and you'll find one that probably will work for your child.
• When you are being sedated the worst parts are going under and coming back up.  I call it "going down the rabbit hole"  Your brain and body disconnect and it's a very uneasy feeling.  It's 200X that when you are not neurotypical or have a sensory issue.  Weighted objects can help!  A weighted blanket or a lead apron from the X-ray department works amazingly well to keep a kiddo feeling safe and secure and not so "floaty" when coming back out of the rabbit hole.  Remember, lead aprons cannot be in MRI suites but they can be in recovery. 

Floating down......

• When my daughter had her sedated MRI, I requested she be put directly on her beanbag chair from the MRI table.  The beanbag would give her some good sensory feedback.     I also explained that if she was having airway issues and couldn't be in that position immediately, I understood.  They told me as soon as they felt she could be in that position safely they would do it.  When I got to recovery with her, we then put the lead apron on her torso and legs.  She woke up without one tear and seemed to be waking up from a nice long nap.  There was zero stress.

MRI day -laying on bean bag and lead apron on legs

• Most sedating physicians and anesthesiologists (if not all), give a mild sedative orally prior to any beginning of the actual sedation.  Typically, a drug called Versed is used and is safe in the pediatric population.  The beautiful side effect of this drug (besides the one you want to make your kid feel woozy and drunk) is amnesia.  So, even if something is scary or "not so fun" the Versed puts cheese-holes in your memory.  It's a nice side effect.  We really want kids to have good experiences so they can build on those experiences.  Each kid brings a "baggage of experiences" with them every time they encounter medical professionals.  We really want that luggage full of good stuff and keep the bad stuff a distant memory.  
• Behavior changes may need evaluation from your doctor.  This is especially important if the kiddo is non-verbal.  Nea stims mostly in the evening time and it usually is spinning with an occasional head crash into the beanbag or couch.   Recently, she started banging her head much more frequently than usual and during an OT session she cried during swinging.  Those things are off the charts for her.   If her behavior was changing to include more headbanging, then her OT and I would deal with that.  But before we went down that road I wanted someone to look in her ears.  Your vestibular system (originating in your inner ear) is a sensory system.  If it's whacked out....yowsa.  In fact Nea did have fluid in her inner ear.  After a week's worth of an OTC decongestant...the head banging subsided.  
• These same notions apply when it comes to working with a dentist.  A pediatric dentist who specializes in special needs is worth their weight in gold!  If you do not have access to that resource, than have a discussion with the dentist prior to the appointment.  We use a lead apron (found in dental offices of course!) for teeth cleaning and flossing.  It works.  Lots of websites are out there with social stories for dental visits as well.

Communication is key.  And yes, for now you're going to have to help educate the medical professionals as you go along the way.  

Who wants a carrot?

What a crazy day!  Remind me to stop stacking everything into my day off.  It's just a bit insanity.  Although I will say that we stayed on time, and we were never late for any appointment.  I need an award!

First stop....occupational therapy.  We've had concerns over the past 3-5 days that Nea is doing much more head banging than usual.  That's an increase sensory need that requires "A"s input.   Nea did very well in therapy but when she was swinging and spinning she said, "Ow, hurt."  "A" stopped the swing and asked her what hurt..."your head or your ear".  Nea responded, "Ear hurt, ow."  No more spinning for the day, but they worked really hard in the tunnels.  "A" wants us to get a compression shirt from UnderArmor and continue to work her vestibular system.  Your vestibular system is what keeps you balanced and aware of your body in space.  The sensations originate in your inner ear....and if she complains of it hurting, plus increased head banging, plus doing some more frequent tripping.....  (no worries, I already had plans to see the pediatrician after therapies).  The best way to "exercise" this sense is to let her fall onto soft services.  So standing on a ball, and falling onto her bean bag is a great exercise.  That sensation of falling is a way to improve the vestibular system.

Weekend crankiness

Next stop....Speech therapy.  Great session.  Lots of matching and engaging play.  She even showed us some of her deductive reasoning skills which was really exciting to watch!  She's getting so much better with language and she's starting to pay closer attention to correction of words.  So when she says "cruck", Diana will stop, put her fingers near her mouth and say..."not cruck, it's truck.  Say t-t-t-t"  And Nea responds in a positive way.  Great work with puzzles and attention to stick with completion.

Moving on......pediatrician.  Clearly we need to see what's going on with these ears.  I work with some amazing pediatric experts who I also call friend.  The pediatrician looked in her ears and said they were clear, but may have some fluid behind them.  She suggested Dimetapp for a few days to see if that doesn't help.  "A" also had explained that many autistic kiddos are more sensitive to barometric changes.  Okay, a game plan is made!

Karen, Chica and Nea at Jamba Juice

Third stop.....the dentist.  Now this is a brand new experience for us.  And no matter any kind of preparation verbally was not going to work for her.  I didn't have enough time to make pictures so I could do a story board with her, so we were both on uncharted territory.

I chose a pediatric dentist who was recommended by Nea's OT and works with special needs kids.  

Let me just say right at the beginning that this was the best dang referral we've had thus far in her life!  

The waiting room was inviting, the toys were fun and the television was on NickJr with Dora greeting us when we walked in.  The dental hygienist came to get us and we both went back to the room.  Nea crawled right up into the chair, excited to be in a new place.  

Televisions on the ceiling!?!?  Oh that was very fun and Nea was very intrigued.  The hygienist let her pick out a new toothbrush and then it was time to lay back.  Nea was hesitant at first, but the hygienist asked me if I thought a weighted xray vest would help.  Ohhh, this isn't her first rodeo!  

The lead xray vest did help to relax her and she opened her mouth to see her reflection in the little mirror.  She let her polish her teeth, and she didn't really care about the floss either.  (mental note made....we haven't tried that yet)  However, that new toothbrush she picked out now had a new purpose.  She put some fluoride gel on there and Nea opened her mouth willingly again.  However that fluoride stuff was NOT one of her favorite things.  I'm pretty sure I'm not going out on a limb here to say that she really, really hated it.  When that brushing was over....the girl was ready to be done!

Then the dentist came in.  And I LOVED her from the second she said hello.  This woman is kid friendly, special needs friendly and knows exactly what she's talking about. She taught me a few things too, which I very much appreciated.

1) Baby teeth are important.  Yes she'll lose them, but her molars she'll keep for 12 years.  Help her take care of them.
2)  Cavities in baby teeth can possibly cause infection.  Remember, her permanent teeth are in her mouth, don't let a cavity cause an infection and raid her permanent teeth. (ohh!  that never occurred to me)

3)  If she ever has to have any major work done....sedation in the hospital. 

4)  As far as the pacifier, you have to do what you need to do.  I'm not worried, there's still time that her mouth will change and it sounds like you're transitioning anyway.  Don't worry about it.

Nea got a great report!  NO cavities, her teeth looked "gorgeous" and there seems to be enough space at this point.  The top teeth may get crowded later down the line, but not too worrisome now.  Nea  was so brave and did such an amazing job.  I'm just so proud of her!!  The dentist's parting words were, "Keep doing what you're doing!"

Hmmmm......those carrots must be working!

Mommy Milk and Oxytocin....PLeASE!

I believe I am in the land of the living.  Although, admittedly I'm not sure that when I blink I'm not sleeping for just a brief second.

Last night was a rough one with our girl.  I'm not sure why.  Just about the time I think we have a handle on things....I get thrown a few curve balls.  It's a good thing I'm a "shoot from the hip" sorta person.  Thank you drama club and ad-libbing on stage with some of the craziest people I know.

Once we went through all our usual arsenal of "get to sleep" tools, I was at my wits end.  Thank goodness WolFie is in this house because he provides such a balance.  That's been true from the very beginning.  When Nea and I were learning how to breastfeed, there were some frustrating moments to be certain.  And of course the more frustrated she got, then I got, then she got, then....okay you see the point.  WolFie would never say a disparaging word, and simply come over to us and say something like, "How about everyone take a break and rest right now?"  And I would sit and cry or whatever to pull myself together while he soothed our very hungry daughter.  Eventually, I would gather myself together and muster the courage to try again.  And usually like magic, she would latch right on.   We both would drift off into some astral plane of contentment....her drunk on yummy Mommy milk and me high on Oxytocin (released when breastfeeding.)

(sorry, back to last night.   Funny.....I remember thinking at the time how HARD that all was....pffft...)

Once I realized that Nea and I were feeding negatively off each other (much like in the early days of our breastfeeding relationship), I made a few changes.  WolFie of course was his loving self making sure just to keep things calm and balanced.  The girl was whining and crying almost as if she was in pain or if she had been scolded.  She needed the sensory stimulation, but didn't know how to ask for it.  The blanket wasn't enough, the shower wasn't enough, the heavy work wasn't enough.  She needed more but she was so exhausted she couldn't even formulate a plan to accomplish that.  She lined up blocks and reorganized them, which gives her comfort many times, but that wasn't cutting it either.

So I decided to stim for her.  I scooped her up and put her in my lap, between my legs.  She always likes to sit there in the mornings as we're getting up.  So I put her in that favorite spot and squeezed her tight.  WolFie put the weighted blanket on top her and cocooned her between my legs.

Okay, here's a confession from me.    I rock too when stressed or needing to relax.  Even sitting her right now typing this, I'm rocking back and forth.  (I think I'm stressed because I'm tired).  So I do get it when it's time to rock.

And rock I did.  Like I've never rocked before.  It worked.  She melted like butter in my arms.  Finally, blissful sleep for everyone.

I hope tonight is better.  But I'm prepared if it's not.  My expectations are never high when it comes to bedtime.

Thus far she's jumped naked on the trampoline for 20 minutes.  It's already a sensory seeking day......

Our Meeting

It's been an exciting day around here!

Nea had a great 10 hour sleep last night, which you know if you have kids on the spectrum, the sleep thing may or may not happen on a routine basis.  I was happy for the rest for all of us in preparing for the day.  She woke up in a great mood, she had a nice breakfast (egg, toast and a smoothie) and then a nice relaxing shower.  I knew we were going to be crossing into "The Danger Zone" if we didn't have some sort of sensory thing for her prior to our meeting time.  Therapies were out today, so it was only the evaluation that was on her dance card.

The evaluation is conducted by the school nurse, an OT person, an early childhood teacher, a social worker, and a psychologist.  These five women all bring a perspective when doing an evaluation.....which is always a good thing.

We started with the school nurse who asked us every piece of medical history and then some.  It doesn't seem that long ago that this information was forefront in our heads.  "How much did  she weigh at birth?"  "How long was the labor?".......all that info is starting to become really fuzzy for me!  Don't judge.  My brain can only hold so much and I didn't bring her baby book with me.

After the nurse completed her Spanish Inquisition, we moved to another area.  Nea was taken to a big playroom where the evaluators stood back and watched her interactions with the teacher.  She hid her eyes immediately and lowered her head so her hair hung in her face.  Quite sad and pathetic looking really.  She wanted no part of any of them.  Her Poppa and I were in an observation room.  After about 5 minutes they came to get us and Poppa went in the room with her for a few minutes.  That was enough for her to feel comfortable and he left.

Then BOOM!  She was up and exploring everything in the room.  Non-stop, no conversation, lots of babbling and picking and choosing things she was interested in.  No acknowledgement of the teacher at all.

Poppa and I were busy with the social worker....who had her own list of 348 questions.  I really liked her though.  She was very sweet, very smart, very kind and very supportive.  I really felt good with her and felt like she would be one hell of an advocate!

Back in the eval room, Nea is not cooperating at all.  She doesn't want to color, she wants nothing to do with blocks.  She has no interest in their card matching game..... And then they took the sheet off the train table....

......Oh ladies, you shouldn't have done that.....

Of course Nea was there in a heartbeat.  The train table is comforting for her, the tracks have order, the trains follow a specific path.  It's all a very lovely scene for her.  But of course she can't stay at the train table and so they decide that they need to take her to the sensory room to help her "burn off" some energy.

Ah, yes....this sensory thing is going to be a major factor in her ability to learn. I've said it from the very beginning.  A Mama knows.  So does the social worker.

When they came back from the sensory room (not sure what all happened there, we were still filling out forms and getting a gazillion questions asked), she was much more relaxed.  She was able to sit, draw a circle or two and pay attention for much longer periods.  We brought Karen (the 2lb stuffed penguin) with us as well....and that helped.

In short, it went well.   I think they were able to see an accurate picture of Nea, her strengths and weaknesses and her potential.

Did I mention I really liked the social worker?

She gave us lots of ideas for potty training, paci transitioning, activity transitions, etc.  She talked about putting up words around the house on objects so Nea begins to understand things have labels.  "Chair" "Stairs" "Wall" , etc.  Seeing the words, seeing letters is part of learning that communication has a purpose.  Right now, Nea still doesn't see the purpose.

The social worker said 2 things today that helped me take a deep breath and relax....

1)  "You guys are doing a great job.  She's lucky to have you as her parents."  Now trust me, I don't need the pat on the back for my own self esteem boost.  But it's nice to know that she believes what we've done so far has had a positive effect.  That means a lot to us and makes all the work worth it.

2)  "I know this evaluation is long, but we are trying to gather as much information as possible.  We want to meet her where she is, and then figure out the best way to help her learn."   Thank you Social Worker Wonderful Person.  It means much to me to know that this team wants to see what she is, give her a hand up and help guide her through this world.

At one point, one of the questions in our 2 hour quizzing was "What's your biggest concern about school?"

And on the inside I was screaming,...."That my baby is too young!!  I'm afraid for her to be out there by herself!  No one loves her like we do!  No one will make sure she blossoms in the world like we will!"

Of course, I didn't say that.

I think I said something like " I am a bit fearful that because her communication skills are poor, her needs are not going to be met."

But what I learned is that this is our new team. Soon it will be time to say goodbye to our Early Intervention team.  They have helped us so much and really were such strong advocates for Nea's progress.

However, our new team brings new ideas, new understandings.  Both teams (new and old) will meet in March to complete the transition and to share information.

 It's time.  It's time to graduate to new things and new adventures.  We're ready.

Is it Autism?

I haven't posted many things of late, as it doesn't seem like there is much to write or review.  We've had a difficult time getting back in the swing of therapies the last couple of weeks because the therapists have been sick.   Last week it really threw Nea off that there was not a speech therapy session after she completed OT.  She kept saying "Diana, where are you???!"  Today when she saw her she was so excited!

In general therapies have been going well.  Nea and I are learning together.    For instance, we know without a doubt, that sometimes she needs extra pressure or compression or something of the sort to give her sensory system some feedback.  So now we leave her bike helmet on a table within her reach.  Every once in awhile she will bring it to one of us and say "Hat on, help."  So we help her put it on, and she'll leave it on 3-4 hours as she goes about the day.  That snugness of a bike helmet is like a soft squishy hug on her head.  Sometimes she'll take one of her "friends"  (could be Ernie, or Chika, or Karen) and put it on her tummy and say, "Pussssh".  That's our clue that she's needing some deep pressure to feel like she's put all together and we spend about 15 minutes doing some massage and joint compression to get her feeling right again.  The fact that she recognizes these needs prevents meltdowns.    She doesn't know exactly how to ask, "Hey listen, I'm feeling really whacked out, could you please give me a big 'ol hug for about 20 min?"

Helmet day!

Essentially our day to day routine goes very well.  Sleep is still an issue from time to time, but the weighted objects (blanket and Karen) help immensely in that regard.

I was talking to someone the other day who commented on how well Nea was talking, how much progress she was making, how she was looking people in the eye, how she seemed more interactive with other kids.  I was excited for someone else to see how this year's worth of therapy really has made a difference in her life. And then the person said, " Are you sure she has Autism?"

My heart sank.

It's not the first time I've heard that from folks.  And, quite frankly, it won't be the last.  But I've really had to figure out why that phrase bothers me so much.  I really want to just stomp my foot and scream,

"YEs!  A team of developmental experts at a renowned Children's Hospital spent all day evaluating her and didn't bat an eye when they told us she had Autism!"

What does that get me?  And why do I want to yell that?  At first I thought it had to do with, "Geez, people let the girl have her diagnosis and lets move on."  But, that seems about the silliest phrase that has ever come out of a person's mouth.   I had to dig deeper.

I went down the road of "Autism really bothers people and they can't adjust their perception of what they believe it to 'look' like."  And that may be partially true, but it shouldn't bother me.  What it does say to me is that more education and awareness is certainly needed.  Every kid with Autism looks, acts and feels different.  And just because my girl doesn't fit your definition, doesn't mean she doesn't have Autism.  I settled there for awhile, because I was pretty sure that was it.

I have a colleague who is doing much research in the world of Autism for her studies.  Her and I were talking about what she is currently investigating right now.  She is looking at the conceptual/moral/ethical component to "fixing" or "moving" kids in our society/school system/world to fit to "normal".  No one ever talks about us conforming to kids on the spectrum.  All therapies, all behavior modifications, all progress is aimed towards helping an Autistic child navigate our world.  Period.

And then it hit me.  Here's my issue with the phrase, "Are you sure she has Autism?"......

That single sentence does not allow her to embrace her own world.  It doesn't allow her to wear her Autism with pride for who she is and what it means for her.  It makes her smaller so she fits in the "regular" world, and not an Autistic one.

 And that makes me incredibly sad for her.  It also makes me angry for her.  That's not fair.  It's really, really not fair.

I don't believe for one second that all of us are going to run around on the spectrum  looking at the world differently.  But at some point, in some instances it has to be okay for her to be able to live where she's comfortable throughout the day.  I think it would be exhausting for someone to pick me up, stick me in the middle of some place in Zimbabwe and said to me " This is your new world.  We'll put you in therapy 6-8 hours a week so you can practice to get the hang of it."

Uggh....

Our family lives in a world of "We're working on....."  We are working on about 100 different things to get Nea prepped and ready for the school world, society, other kids, other adults, etc.

We are working on....

• recognizing facial expressions
• identifying emotions
• not grabbing, using words
• finding a "suitable" replacement for her paci
• 3-5 new signs
• picture cards for communication (it's going so badly)
• no food hording
• no toy hording
• identifying triggers that cause her to stim
• minimizing said triggers
• touching soft objects
• on, and on and on....

Are you sure she has Autism?

Yes, I am quite sure.

Looking for a Bear, Finding a Penguin.

First, before I get down to today's post, I would like to rant about a little something.....

*stepping on soapbox*

Alright, you jerks that park in parking spaces you are not supposed to....shame on you!  I take my daughter to the pediatric rehab department weekly at the local hospital.  The hospital has been kind enough to dedicate 5-6 parking spots in the front part of the parking ramp for parents who are bringing their kids to the rehab department.  Each spot is clearly marked, "Pediatric Rehab parking".  Seems easy enough.  If you have a license to drive, I'm pretty sure you can read as well.  Why did they do that?  Many of those kids who come to the rehab department have devices such as walkers, canes, special strollers, wagons, etc.  And when you're toting a kid with any of these devices, it can get pretty cumbersome.  The shorter the walk, the much better.    We are fortunate enough to not require one of these devices.  However, my child is autistic and has bolted away from me one too many times no matter how tight my grip.  I'm grateful that we only have to walk a short distance, and are out of harm's way quickly when we park in one of those spots.  It's unbelievably disrespectful for you to decide that your personal "got a good spot!" need is rated higher than the need of a disabled child.  Shame on you.

*end rant*

Alright, moving on.

A new year and a new round of testing in therapies!  Everyone is gearing up for our upcoming evaluation in February by the school district.  It's time to test again and see where she lands so that information can be shared with the school district prior to their own evaluation.  Is she really going to be 3 in just a few short months?

Both the OT and speech eval will be done in different parts.  Her OT session went well enough today.  Nothing new or major as far as needs go.  Nea still has sensory issues that will continue to need worked on daily.  Her trampoline that Santa brought has helped immensely at home with pulling herself together when she feels out of sorts.  The jumping is good joint compression, which my little sensory seeker needs to feel balanced.  Last week we did not have OT but we did have speech therapy.  As expected, it was a much more difficult session. There was a lot of head spinning and arm flapping to be able to stay focused.  She was able to maintain, with Diana's help.  In Nea's case, "help" means that Diana picks her up and sits her on her lap, giving her soft "squishes" to see if she can help her get herself back together.  It usually works.  I am grateful everyday that Diana is a part of her life.

Diana started the speech evaluation this week.  The first test was the "articulation" test.  Nea identified many pictures on her own and the ones she didn't she would repeat very clearly to Diana.  Nea's VERY much echoing these days.  Echolalia is a very normal language development tool that children use, but for a child Nea's age, it should be waning by now.  We know Nea's behind in expressive language so it's no surprise that it's just making its appearance now.  The point of all this is...Nea can SAY the words almost expertly, but when and how and why to use the words just isn't all connected as yet.  More testing next week as Diana evaluates expressive and receptive language.

One of Diana's cards had a picture of a boy crying on it.  Diana said, "What's he doing?"

Nea: "Awwww, he's sad."

Diana:  (picking herself up off the floor)  "YES!  He is sad!  What is he doing?"

Nea:  "What is he doing?"  (it's hard to say if she was echoing or if she really wanted to know)

Diana:  "He's crying.  The boy is crying."

Nea:  "The boy is crying.  He is sad."

And there I was, in the observation room sobbing.

 All these months of reviewing, seeking out faces to explain emotion, over and over, repeating, reviewing pictures, books...on and on.  Today we were able to see it come together.

It's not only that she recognized the face of sadness, but that she was appropriate with empathy.  She had an appropriate response with "awww, he's sad" and not just a mechanical one with, "he is sad"  It's such progress and I hope to see more in the weeks to come!

After our weekly trip to Jamba Juice (note to self: buy Jamba Juice stocks),  we headed to the mall.  Of course, we can't be in the mall without a train ride.  The conductor knows us by now.  We have a lot of punches on our card.

1st Train ride of 2013

Our next stop was the Build-A-Bear workshop.  I've been in there a few times with friends' kids, but never with my own.  This was our first time in.  Nea's had a bit of a fascination lately with bears.  She really likes the Bear Hunt story, as well as watching Brave.  She calls the Queen (who turns into a bear) "THE bear" and the bad bear "the OTHER bear"  She points out bears whenever she sees one (stuffed, drawn, on tv, etc.).  So I thought we would head to the Workshop and make her a bear of her very own that she picked.

I also had an alterior motive.  (Just so you don't think that I'm a mom who gives into every whim my child has, dear reader).  I learned on one of my listservs for parents of autistic children that Build-A-Bear would help you make a weighted stuffed animal.

Remember, Nea is a sensory seeker.  This means she likes deep pressure, heavy things, etc. to give her body feedback and information to her sensory system.  When that happens, it starts making straighter pathways of information, instead of crooked ones.  Crooked pathways require self -stimming, like flapping and spinning and squishes.

Of course my girl who has a new fascination with bears, fell in love with the penguin she saw in the bin.  Admittedly, I loved it too!  So we took it to the workshop gal who began stuffing it and then she added the 2lbs worth of poly pellets that I had brought with us.  The new stuffed penguin, who normally would weigh a quarter of a pound....was now topping the scales at 2.5lbs!

She loves it.  It's good for her to carry it around.  She lugged that thing through the entire mall as we made our way to the exit.  2 lbs of penguin is a lot of work for the girl.  But it's good work and it's work that keeps her grounded.  I've never seen her walk such a straight line in all my life.

In case you're wondering, the penguin has a name that Nea came up with all on her own.

Everyone, meet Karen.....the 2lb penguin.