Stimming

You've done it.  Yes, you.  If you've ever twirled your hair, shook your leg, bit your nails, drummed your fingers, tapped your hands....you are stimming.  Self-stimmulating behaviors.  They can provide sensory input or quiet an over-active nervous system.

Let's remind ourselves about Autism.  It's defined as  "a disorder of brain development, probably beginning before birth."  Notice it says "probably"....because in fact, we just don't really know.   It was once believed that it was caused from bad parenting.  We stressed out and devastated many Moms about "frigid mother" back in the 50's assigning the fault to them. Now the thought is that it's a very complex and multi-organ....affecting the GI system, the immune system, the metabolic system and the central nervous system.  It's very common for kids with Autism to have sleep disorders (Nea certainly does) and hormonal imbalances are being reported (Nea also has this).

The stimming behaviors are part of that central nervous system issue.  The difference between "typical behavior" and kids who have Autism is that the typical kids can turn it off or stop the behavior.  Children with Autism cannot. It should also be noted that some stims are seen as "disruptive" and therefore, therapy is used to help with the behavior.   There is much discussion in the Autism community and with behavioral therapists if these kiddos should be allowed to stim or if it should be stopped.

So, can you identify your own stim now?  I will confess, I have 2 very strong stims.  First, I twirl my hair....usually when I'm bored, or when I'm trying to concentrate.  I also rock back and forth.  I'm doing it right now as I type.  Self-stimmulating behavior for typical kids (and adults) is a matter of choice and a matter of intensity.  I can stop rocking and twirling very easily.

And, as predicted, Nea stims too.  We had to make a decision on this journey if we were going to allow her to stim or if we were going to try to stop the behavior.  At home, we allow her to stim and do not put limits on it at all.  In fact, we view it as a communication tool.  And we know at school the rules of society are very different.  They teach "quiet hands" if it starts to get to be too much.  I noticed that during speech therapy (when Nea has to concentrate very hard) that she starts moving her arms up and down as if she's drumming.  The therapist ignored it for a period of time and let her center herself with that activity....and then redirected her gently.  It worked well.

 So how do we know when Nea is stimming?  And what's it mean?

She has an oral fixation for sure (the paci, licking all new objects, flicking her nose to create a vibration around her mouth).   In and of themselves, they are not a big deal.  Babies and infants mouth objects all the time, it's how they get information.  6 month olds have a joyous time when they find their hands and toes and stare at them constantly.   However, for Nea at the age of 3, these activities are not developmentally appropriate and may even be in the way of progressing other development.  She also likes 3 pacifiers at a time.  One for her mouth, one to flick her nose repeatedly and one in her hand....squeezing.

A 3 paci moment (click on pic to enlarge)

Her other ones are spinning or falling down hard.  I can tell you when I see them the most....when she's been over stimulated (after school, time spent in a big crowd, or in an area with lots of noise) or when she's trying to deal with a big emotion (excitement, anticipation, fear, anger, frustration).  Her vocabulary is limited, so her ability to let us know the issue is limited.  She's 3....3 year olds can be quite verbal in expressing their ideas and emotions.  But because communication and speech are so difficult for her, it seems to manifest itself in different ways.  It's our job to meet the need with either a weighted blanket, dark room and quiet activities or hit the other end of the pendulum and get her on her jumper.

 I will tell you that some of it is science, some of it education from great therapists,but most of it's gut instinct.

Some therapists and scientists believe that stimming often produces a chemical reaction in the brain and that for people with Autism, that reaction is 10-fold.  If you've ever experienced a "runner's high", you understand what this means.  Seriously, if you had that feeling when you flicked your nose repeatedly wouldn't you do it often?  And if you were in a very stressful situation, wouldn't you do it as much as possible?

For some reason, I get this stimming thing with her and it never bothers me.  Maybe it's because her stims are more subtle.  But  I know for some parents it makes them very uncomfortable.  Although, I have to say,  the looks we get when she has a paci out are downright damning.   As she gets older, my plan is to help her identify when she's stimming so that she can understand when it's coming and come up with strategies to deal with it.

In the meantime....we spin, we rock, we jump, we flick and also we squeeze, we hide, we cover.

Welcome to Autism.

Can you hear me now?

Have I talked about listening issues before?  Have I talked about auditory sensory processing troubles?  Oh who knows, I can't remember!  Regardless, you get it now.

Jamba Juice treat

First, let me talk a bit about OT.    

Nea is doing well with crawling in spaces, going into tunnels, walking across unbalanced surfaces, etc.  Her therapist has been working on helping her gain upper body strength as well as gaining better proprioception when leaning forward.  Nea prefers to play with things at eye level.  At her age, it is not developmentally appropriate and if we don't "buff up" this sensory piece it will only harm her in the long run.  We have been working on (with the OT's help and suggestions) many "falling forward activities."  At home, this means that her Poppa holds her up and drops her face down to the floor.  Of course he doesn't drop her, but Nea gets that sensation, which eventually re-forms those neuro pathways.  Many times I also sit her on my lap and lean forward with her in my lap to get something off the floor.  She resisted a lot at first, but she grew to actually enjoy it.  

That seems all complicated, but the more developmental type of play she does....the more social interaction she will get.  Her peers are not going to want to play with toys at eye level.  

Yesterday, she put her train track together ON THE FLOOR and played with the trains actually looking DOWN at them.  That's a huge step.  

Okay, so clearly we know Nea has sensory issues.  Pretty much every professional in a tri-county area writes that down in some report somewhere.  And we all know that hearing is a sense.  Of course it's affected.   

Without a doubt it is difficult to get the attention of a  2 year old (almost 3!) many times.  I have to say (because hindsight is significantly 20/20) that we noticed that early on in Nea's development.  I could say her name 1000 times and she would never turn in my direction.  However, if I clapped my hands, or squeaked a toy, or banged on a table, she would immediately turn in my direction.  At first I thought there might be a hearing issue, but she could be upstairs and hear her favorite video come on (even with the volume low) and come barreling down the stairs.  She could hear fine, but some things just weren't getting through.

Turns out there are lots of studies on kids who have ASD (Autism Spectrum Distorder) who also have major auditory processing difficulties.  I could recite the statistical information (because trust me, I did the research) but really I just completed my stats class in my MBA program and I have no desire to play around in those numbers again.  Rest assured, its a significant amount.

Now remember, not every kid on the spectrum is the same.   Some kids have limited processing of auditory information and some kids are hypersensitive to sounds.  There is a neurological issue in the brain in how it processes sensory information.....including hearing and it affects each child in a different way.  

What they also discovered in the research is that speech is the most difficult to process, versus other sounds. Well now it makes sense why she responded to that silly quack sound I would make versus her own name.  And as maddening as that was at the time, I am very grateful to understand it.  If there is a dangerous situation (like....she runs ahead of me when we are walking in the parking lot) I used to say "Nea!  No! Stop! Nea!  Nea!  Nea!"  And of course my girl, who has an issue processing speech did not register any of that.  But because I know what I know....I have a "danger sound" that I make.  It sounds much like a fog horn (its the best description I have) with her name included in a very low tone.  It's the best I have.  But it will make her stop immediately when she hears it.

We continue to use sign language when she is in states of frustration or excitement.  What amount of auditory processing she has, is tossed out the window when those occur.  This becomes important to help her with impulse control in the pool when I sign "wait" or "sit".  She will follow direction well, as long as the message gets to her in a way that works.

Enter school.

Think about how much listening you did/do in school.  Even in a early learning center with a very fun, exciting special needs teacher....you are still going to have to listen.  AND there may be some instances where you have to listen and follow direction.  That can be paramount for an ASD kiddo, and could end up frustrating for everyone.  So today at therapy Diana did some auditory exercises with Nea.  

She laid 4 cards on the table that all had pictures on them of different animals.  Each card had about 8 different pictures.  She put a CD in and it rotated through each animal sound randomly.  When Nea heard the sound she had to put a token on the animal picture.

It was a game she loved! 

"I got a chicken!"  "Oh! I know! I got a cow!"  "It's a kitty-cat!"  ....on and on and on.  She stuck with that activity for a full 20 minutes.  Her accuracy rate was well over 95%.  And if there was a sound she hadn't heard before (like the sound of a donkey), she remembered it when it came around again.  Interestingly enough, when she heard the bees she would quickly cover her ears and close her eyes.  Apparently that sound is received negatively when she hears it and that's good for us to know.  I tested that theory when we were sitting eating lunch and just randomly made the "Buzzzzzz buzzzzz" sound.  She immediately covered her ears, closed her eyes and turned her head.  

Auditory exercises will help her in school.  And that's a keen skill to have at home as well.  But they are exhausting for her and she spent the rest of the day in a pretty low-key mood.

I appreciate Diana thinking ahead to school things....and for giving us more tools to use!!

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.

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.