Always learning

Life is happening.  Every day life is happening, and I am grateful for all the little things along the way.

Playing with new friends and did a self introduction!

I update on the facebook page with the day to day things that happen in Nea's life.  However, today it just felt like a day to do an actual post.

As I stated before, we decided to put Nea back in private speech therapy.  Her Poppa, myself and the private OT felt that she was stalling in the area of speech.    She still gets speech services via her IEP at school but I have a feeling that I may have to advocate for something a bit different for the next school year.  Chopping it up in 15 minute increments just doesn't work for her and we'll need to brainstorm other ideas.  (of course that all could be an interesting conversation when all 17 of us sit down to discuss it!).

Waiting in the lobby for therapy

When Nea has her private OT appointment (every Wednesday morning) I usually sit in the waiting room.  There is not an observation area, and I'm too distracting to be present during a session.  Usually I use it as good "Mommy time" by reading a book and enjoying my favorite chai tea.  After about 30 min into the session, the therapist came to get me.

"You have to come see this."

 Remember when I talked about the OT rumpus room?  There were so many things in that room that terrified Nea.  Swinging was a nightmare, going through tunnels caused panic, odd textures made the tears come.  All her sensory issues manifested in this room as we identified them one by one.  I always felt bad for her because it just seemed so torturous!

And so I went to the OT room to see what A wanted to show me.  Nea was sitting in one of the tunnels.  Let me say it again.  Sitting in one of the tunnels.

"Hi Mama!  Watch!"

She crawled out of the tunnel, onto a platform, up a tube, and shimmeying down into the tube.  The therapist gave her an instruction "hand me the blue hand."  Out she popped with the blue rubber hand and gave it to her!  She then shimmied down the tube onto the big pillow and then had to crawl onto tiny stools on her hands and knees.  The therapist would say, "Okay, move to blue" and she would move her hands, then knees to the little stool.  "Okay, now yellow" and she would do it again.  The therapist had to steady her knees or she would tip over, but she did it!  Her upper body still has low tone and balance remains an issue.  But with a sturdy hand she is very proficient!

The dreaded obstacle course

Nea then had to stand up and hop on the rubber feet placed on the floor.  To my amazement she hopped  with a spin when the foot pattern changed.  I'm pretty sure I can't do that myself!  When she was done, she looked at me and beamed.
"I did it!"

Can YOU hop this pattern??

Proprioception (knowing where your body is in space), multiple terrains, upper body strengthening, listening to direction, leaning forward without falling, balance, fine motor skills, gross motor skills.....all pulled together in a 3.5 minute obstacle course.  I couldn't believe I had seen what I just did.

Nea spotted Diana (speech therapist) in the hall and said, "Oh!  There's Diana.  I have to go Mama.  See you later!"  And off she went.

I'm still gobsmacked in the OT room watching her walk away.

The OT said to me...."remember when she couldn't even come in here without screaming? Remember when everything about these obstacle courses made her shake with fear?  Look at her now!  You guys are doing such a good job!"

Us?  Uhm..... I don't think so lady.   I don't have an obstacle course like this at home!  Her therapists are top notch and give her so much patience with love.  They push her, they hug her, the meet her halfway.  Nea didn't get this far by herself....it's taken a village and that will continue to be true.

 I'll admit it.  I cried as I sat there thinking about what progress she continues to make.  On her timeline.  In her own way.

It's a lesson I constantly have to learn and remember every single day.

Nea did just as well in speech therapy.  Diana is working diligently on auditory processing.  She gives her lots of exercises that require her to listen, process information and make decisions for answers.  You can tell it's taxing and requires a ton of focus.   We've started to notice that when she needs to concentrate she holds the object up very close to her eyes.  Is she doing that because of a vision issue or is she doing that because she has to narrow her field of vision and let nothing else in?  It's a mystery that's not solved today, but it's something we're going to have figure out with the help of OT.

I also learned a great tool today!  When Nea says her own name, she says, "I'm Mia"  I correct her every time, but it doesn't seem to stick with her and she just can't pull that "n" sound out.  Diana noticed her doing it today as they were playing a game.  Nea would say, "It's Mia's turn"  Diana stopped her, had her look at her mouth and gave her a visual and verbal cue.  "Not Mia, Nea"   She used the cues that she uses with kids who have apraxia, which is a motor planning issue.  Basically, she holds her finger to the side of her nose, crinkles it up and says the "n" sound.  Nea got it right with that cue every single time.   I'm so happy to have this tool now!!

It took me a full hour to get her out to the car!  Why?  Because if we don't need to veer from the routines, then really we shouldn't.  She's just happier that way.  She had a pretty busy morning in therapy and certainly functioning outside her comfort zones.  Ritual and routine are comforting....that's true for all of us.

Jamba Juice silliness

So off to Jamba Juice for a snack.  And then the busy beads for some brief play.

Busy beads!

 And then to the lobby to look at books.  To her delight there was another kiddo with his family in the lobby.  She said to me, "Look Mama.  There's a boy."  And so I helped her with the introductions...."Tell him your name" "maybe he wants to play....you should ask him."   And so they did.  They played together for a good 30 minutes.


I'm quite sure her bff, Eli will be insanely jealous if he ever finds out.

Routine: "Habitual or mechanical performance of an established procedure"

Routine.  We all need it.  Kids really need it.  Our kids on the spectrum need it about 1000 times more than the rest of us.

Nea is missing school.  She asks about the bus and going to school every day.  And as her language increases, I'm also noticing that her echoing is getting stronger as well.  I'm not sure if that's a learning process with new language or she's just blowing off some stress steam.  She repeats phrases often, which I won't lie...can be maddening.

Nea's brain is wired in a way where she likes to keep things the same.  Repetitive behaviors is one of the hallmarks of Autism.  There are certain things that she likes said in a specific order....

Hearing a train....
Nea: Oh! What's that?
Me:  (she knows exactly what it is, but its the script she wants)
Nea:  (frustrated because I am saying nothing)  Mama!  What's that?
Me:  (sighing)  What IS that?
Nea:  It's a train!

If I veer from that script she gets very upset and gets very frustrated.  She recites that script every time she hears a train whistle.  If I say, "Nea, you know what that is....what is it?"  She simply responds with the line, "Mama, what's that?"  She learned that script when she was very young, and I was trying to get her to focus on something she couldn't see.  Dog barking, train whistles, etc.  But now its a script that brings her comfort and she uses it often.

There used to be a school of thought that it was important to "pull Autistic kids out of their world" and not let them engage in repetitive behaviors, or self-stimming activities such as spinning and hand flapping.  But what we are learning from adults who are on the spectrum is that it brings them much relaxation and decreases anxiety.  So now there is a bit of a shift to allow these behaviors in moderation so that kids can maintain a balance that works for them.

I love this description by Dr. Mark Bowers, a Pediatric psychologist.

"I do want to take a moment to acknowledge, however, how it must feel for a parent to see the Autistic ‘veil’ drop in front of the child’s eyes as they check out from the real world for a moment and become absorbed in a repetitive behavior.  Especially for parents who have been working with their child for a number of months or years and have begun to see progress; the child’s return into scripting and other stereotypical behaviors is a glaring reminder that the child has Autism.  It also serves as a reminder to the world that something is not quite connecting in the child’s brain.  I often conceptualize this as a neurological tug-of-war that is taking place inside the child’s brain.  The hardwiring of the Autistic brain is determined to keep the world simple and the same, with little (if any) interest in relationships or social connections.   However, as the child makes progress and begins to learn how much fun can be had with others and the value of having play partners, another part of the brain begins to compete for dominance."

We decided long ago that home is a "free zone."  You should be able to do what you want to do at home right?  If I want to walk around without a bra at home, because I  feel more comfortable then I should be able to do that.  If Nea wants to watch the first 7 minutes of a movie over and over and over and over....she should be able to do that.  There are so many rules in our world that we are expected to follow that it seems just mean to make her follow them at home.  Don't get me wrong, it's not Lord of the Flies around here.  She still has to say please and thank you, she still has to do her chores, she still has to use words when requesting items.  But she also gets to let her hair down too.

Yes she has chores.  Just 2.  The first is to open the back door and let the dog in when he's done doing his business outside.  The second is to put a scoop of dog food in his bowl every night.  Not horrible chores, but 2 things she is very capable of doing.   Those 2 simple things teach her a few things: listening for the dog when he barks (auditory processing) (opening the door but NOT leaving), caring for the dog (empathy) and accomplishment (self-esteem boost).

Okay, back to today.

Here's how things go when we go to therapy:
1) We wait 5 min in the waiting room
2) Bear comes to get Nea for OT (Bear is the nickname she gave the OT gal)
3) Nea goes to Bear's room for therapy for 45 minutes
4)  Bear and Nea walk hand in hand to Diana's room for speech therapy
5)  Nea is in speech therapy for 45 minutes. (Mom is secretly watching in the observation room)
6)  Nea calls for Mom and Mom comes in to talk to Diana for a few minutes
7)  Nea waves bye to Diana and goes to the waiting room.
8)  Nea pushes the button to open the door and runs to Jamba Juice (just around the corner)

Today it went like this:
1)  Waiting room wait was 15 minutes
2) Bear comes to get Nea for OT...she has a student with her
3) Nea goes to Bears room for 45 min of OT therapy
4)  Bear walks Nea back out to the waiting room because Diana is not ready yet and with another kid
5)  Nea is in waiting room again for 15 minutes
6)  Diana comes to get Nea from the waiting room...she has a student with her
7)  Nea goes to Diana's room for speech therapy (Mom is secretly watching)
8)  New activity to include playing a game with a peer.  Diana with Nea and Bear with the other child.  Diana and Nea walk to Bear's OT room
9)  Nea tries to play the game.....total meltdown

Now, before anyone gets all out of sorts, I am NOT upset with anyone about this scenario.   Diana asked me beforehand about playing with the peer and I thought it was a good idea.  Also, I totally understand how things come up and patient flow gets interrupted.  It happens to me too when I'm at work, and sometimes its just inevitable no matter how hard you try.  It's not anyone's fault.

This meltdown was pretty tough.  I haven't seen one like that in a long while.  Diana came to get me and I scooped Nea up for tight squeezes and handed her her paci's.   Her teddy bear (the cherished friend these days) was in my purse so that was given to her as well.  It took about 10 minutes to get her calmed down.   Diana felt she tried really hard and seemed to really want to participate, but just couldn't keep it together.

We went swimming after therapy.  90 minutes in the pool did her a world of good.  We know she loves the water and the natural compression of the water is good for sensory integration.  She did tons of underwater swimming and was exhausted when we were done.  Wrapped in a towel after swim is another one of her rituals that she needed today.

We learned a few lessons with this one:
1)  We are trying again next week, but the peer will come to Nea's speech room and Nea will not go back to Bear's room.  That was probably the biggest stressor for her.  When she leaves that room, she believes she is done.
2)  Use visual cues for her before the peer activity.  She used visual pictures in school and they worked well for her.  When it was time to sit on the carpet, the teacher would hold up the picture and tell the kids it was carpet time....and they all scampered to find their seat!

Leaving routine is a stretch goal for Nea.  She's going to be uncomfortable for awhile as she tries to gain this skill set.

Climbing

I was asked to speak at an event on Friday night that was a fundraiser for the pediatrics rehab department at our local Children's Hospital.  Nea was asked to ride her bike to help raise awareness of all the great things some of these partnering organizations do for kids.  We sat court-side, and Nea seemed to be really excited to be in the middle of the action.  She kept her eye on the ball most of the time, but after the 1st quarter she was getting ancy so we had to keep moving!  

We made it to half-time and Nea did pretty well.  She had her fingers in her ears often, so the sound must have been constant and loud enough it started to bug her.  When half-time came,  we loaded her up on her bike and she booked it across that gymnasium floor!  

I was asked to speak about what therapies have meant to us and how it has helped our family.  Do I remember what I said?  Not a word.  I tend not to write speeches like that, but rather say them from a real a place as possible.   But when I do, I cannot remember a word I said.  It's like my brain disconnects and my mouth just starts speaking.  I know the sentiment had much to do with how our life changed, how Diana encouraged us to get her formally tested, how their support was invaluable and could never be described in words, and how they gave us our daughter back.

That part I remember clearly.  Because the reality of that part is still etched in my heart.

We knew that by the time we took her to the pediatrician and words were disappearing that we were in trouble.  And we knew that she avoided people so strongly, that even Grandma was having a hard time getting in that she was starting to disappear into herself.  We knew that if we didn't get her help soon, we may lose the one window we had to reach in and grab ahold.

Speaking at event (creative face blocking added by me)

The message I was trying to convey is what science has spent a lot of time and money proving.  The earlier kids with Autism are identified and therapies started, the better the outcomes.  Its intense therapy for many hours a week, but it changes brain function!   What we have spent the last year doing is understanding and working with this thing called Autism.  Sometimes I've been pleasantly surprised, sometimes I've been lead down the primrose path and sometimes I've been completely snowballed.  By the time Nea is old enough to start asking questions about her Autism and what it means to her, I hope I have an arsenal of information to hand to her.

When we were at the park today, I kept thinking about where we were just a year ago.  A child that couldn't talk or express herself.  Days and days worth of meltdowns because of frustrations with communication.  Poor sleeping patterns.  Frequent stimming with hand flapping and head bobbing.  She still has some of these issues, but they are not as pronounced AND we know what to do with them now.  It's been a year of growth.  I'm no expert, but I'm an expert where my daughter is concerned.  So, in pictures .....here's how far we have come....

A mature pencil hold.  It may seem like nothing, but being able to hold a crayon/pencil/pen correctly now will save her tons of frustration as she begins to learn how to write.  OT works long and hard with her to help her get used to textures and participate in "usual kid stuff".  If Nea is paralyzed by these things, she will not keep up with her peers.

Shared interests.  Do you realize that she wouldn't point to objects so that we could share an experience together?  That's a significant milestone and one that evaluators look at closely.   If she stays in her space and never draws me in....it will be more and more difficult to keep her engaged with the world around her.  This was a significant delay for her (almost 30% delay) and she's come a long way with it!  Johanna (the DT) spent hours and hours and hours figuring out how to engage Nea, keep her engaged and teach her how to share a conversation with someone else.  

Showing me a bug she captured!

Upper body strength.  The girl would fall on her face.  A lot.  She had no core, no upper body to move her through a tunnel or keep balance if she needed.  Again, OT played a huge role her in helping her gain more control of her body and start to feel comfortable with it in time and space.  Doesn't she look like such a big girl in this picture?  

Gross motor.  She didn't really have many gross motor delays.  But what she did have was the poor coordination factor.  Incorporating gross motor and fine motor together to do something like climb a rock wall takes focus and persistence.  She fell off this rock several times.  There was no meltdown or frustration or head-butting.  There was only her saying, "try again!"  (It must be a phrase she hears a lot in OT)

I'm telling these stories for 2 reasons.

1) Because some days the mountain seems so overwhelming I can hardly stand it, and this is a good reminder that what I think is impossible today....may not be impossible tomorrow.

2)  Because other moms, dads, grandparents, friends, families need to understand and find value in early intervention.

I'm not trying to toot my horn.  (my horn is broken, has been for awhile)  I am trying to advocate for kids.  Listen, we didn't make these huge strides by ourselves.  We had help.  We had HUGE PROFESSIONAL help.   And if you know a kid who might be on the spectrum, or has any developmental delay, please...get them into an Early Intervention program.  (age 0-3) You can find details for your particular state.

Everyone needs help to climb a mountain.

Or a rock wall.

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!

The holidays are over....back to work!

We made it through the holidays!!

This is the fun age for kiddos just starting to "come into" the notion of Santa and the whole leaving presents thing.  I can't say Nea really grasped the presents part, but she did start to call anyone in a red hat "Santa!". When we got up on Christmas morning, she was happy to see the pretty packages, but didn't really understand that they were needing to be opened.  Of course, after the 1st one, she was done.  Happy to play with a new toy and spend the rest of the day doing her normal routine.  We really let her pace herself, and even once she went upstairs to her tent and chilled in there for a few minutes.  Finally we just let her bring the presents to us as we went about our morning.  She would bring one to me and say  "Open? help?" and we opened it together.  Then she would take off and come back with a new one 30 min. later.

Big sticker book from Grandma!

At Grandma's house it was about the same, except more people and bigger cousins.  But as the afternoon got to be too much, she went up to Grandma's big fluffy bed and laid under her pillows for a few.  I'm thrilled that she knows how to meet her own needs at such a young age.  If we can avoid the meltdown situation, it's just all the better for a stress-free day.













Last week's therapy sessions were a nightmare.  OT and Speech both ended in tears and lots of emotional stress.  We all weren't sure why, but it turns out later that Nea ended up sick, so perhaps she just wasn't feeling well.  Developmental therapy was also very horrible.  I was home sick myself and watched her meltdown into oblivion as she cried and threw herself down, then started banging her head onto the floor.  That's some very painful (and could cause nasty bruising) self-stimming so we just ended up stopping therapy early.  She was far too stressed and far too "gone" to be able to do any real work in the first place.

Stressed after therapy.  Needing all comfort items.

Overall, last week....blech.

This week however was much improved.  Nea shook off whatever bug she had after a couple days, Christmas went well and we were back in therapy again today.

OT sessions are increasingly more difficult as "A" works to improve her upper body strength and core.  It seems that she's regulating well with the "where's my body in space and time" thing and so she's moving Nea on to making her way in the world much easier.  This means lots of obstacle courses  that require Nea to go over, under, through, around, carry, under, jump, tipsy, etc., etc.  It's tiring for her and she tends to face plant a lot because she lacks that upper body strength needed.  Nea does not look down or put her chin anywhere close to her chest.  Doing so perhaps makes her dizzy or makes her head spin enough that it makes her unbalanced and she falls.  So to compensate, Nea will bend her body at the waist and cock her head to one said, looking sideways.  This increases her field of vision, but in the long run, doesn't really help her.  So our homework this week is to do activities that require her to look down more and make sure her head is moving, not just her whole body.  It's one of the reasons why she plays with everything at eye level.  She kneels in front of her train table when she's playing there and she likes a desk that's nose height when she's lining things up.  But, you all know how therapy works.  Just when you start to get comfortable....you gotta stretch even more.

Speech went very well.  Nea's learning verbs and I was shocked at how many she knows.  Diana would hold action cards up for Nea and say "What is the boy doing?"  or "What is she doing?"  and Nea was right 100% of the time with answers like "reading" or "swinging" or "swimming" or "jumping", etc.  I was amazed!  One of the cards was a baby crying and when Diana asked her what the baby was doing, Nea had no idea.  She finally looked at Diana and said, "What is she doing?" and Diana explained that she was crying....she was sad.  It looked like a pretty lost concept so we'll see how that one develops.  There's a part in the Temple Grandin movie where her aunt takes pictures of different faces and has Temple write on the picture what the emotion is to help her remember.  It's that whole social nuances thing that is going to be tough.

Nea's new thing is to growl when she's frustrated or not getting her point across.  She was tired and a bit stressed as we were walking to the car, which is why I let her have her paci.  She's doing the pattern of cough, cough then growl.  FINALLY she got out what she needed to ask me.  And gave me the major stink eye when I didn't tell her what she wanted.

She'll hate me later, but I'm glad I was able to catch this moment.....

The MRI Day

I can never express enough how grateful I am for the people in Nea's life.  We have been so blessed to have come across such amazing people who work tirelessly for her.  I know people say things like "you're an amazing Mama" and "what a great parent" and I appreciate the compliments.  However, I'm just Mom and I do the things I do because I love my daughter unconditionally. But there are real heroes in my child's life, and for that I have not enough words of thanks.

It's an interesting set of fear and emotions when your child is undergoing some sort of high risk procedure.  It's even more interesting when that procedure is done at the place you work every single day.  And it really is extraordinarily interesting when said procedure will be done in the department you work in and the people you work with side by side.

Believe me, I was scared.

I wasn't scared of the team.  I trusted the doctor, the nurses, the child life specialist,  the MRI techs, etc. in the whole process.  The problem is I knew too much and it was hard stopping my mind from jumping from A to Z.  The bottom line is we make sedation procedures very safe.  We monitor children very closely.  We have lots of expertise, knowledge and emergency training.  We put safeguards in place constantly.  But, things can still happen. Just because we read "the book", doesn't mean the kids do.

Nea's OT worked us in for an early therapy session prior to the MRI.  She put her in the swing, she put her in the ball pit, she pulled her around on the scooter.  Nea was very chilled by the time we left.  She also was hungry!  However, she couldn't have anything to eat and drink until her sedation procedure was over.

So what do you do with a hungry 2 y/o who you can't feed and you have 90 min to kill?

You take her to the park!!

When you take your kid to a hospital that focuses on kids....it makes all the difference.  When we were in the waiting room, the receptionist gave Nea a purple backpack of fun stuff like crayons, hand shakers, coloring books, etc.  It was the perfect distraction while I filled out paperwork!

Waiting to do the MRI

One of the kiddos that had just had his test done and now awake, came into the room with his parents.  He was really upset and crying.  Nea stopped her coloring and looked at him for a long while.  I explained to her that he was really sad but his Mamma and Poppa were helping him feel better.  She kept watching and finally said..."uhmm...its okay"

Wow.

We were taken to the prep room where Nea was checked over, vital signs done (she did great!), and the doc came to talk to me.  Admittedly, it's really kinda funny because the doc and I work closely together all the time and teach families about procedural sedation.  I let her off the hook and told her I didn't need the full 20min lesson. :-)

Versed is a great drug.  It makes you sleepy, pretty loopy and downright happy to be on the planet.  It also has an amazing side effect of amnesia.  So even if things became unpleasant for Nea, she would never remember.  Why is that important?  It's important (and not just for her, but for every kid) that she is able to build positive experiences.  It's important that she has a trusting relationship with medical staff and that she not fear them.  We CAN make things pleasant for kids, and it's the right thing to do.  We have numbing lotion for IV starts, we let Mom or Dad hold a kid during an IV start or even putting in a catheter.  We can do some pretty cool stuff for kids, so that they have positive experiences.

Enter the Child Life Specialist.

It's an amazing profession.  Google it and understand who these people are and what they do.  In short, they make sure that kids are allowed to be kids and they are not overwhelmed.  They advocate for them so they minimize pain and fear.  They teach kids about their diagnosis in a language they understand.  And they make sure that trust is built.

Nea's IV was started relatively easily, and she went with one of the nurses to the MRI suite.  No tears, no fear, just snuggled right into her as she carried her into the room.  (Thanks Versed!).

I slipped back into the waiting room while they began sedating her.  I'm told she did well, no problems with sedation and went right to sleep.  The Child Life Specialist even told me, "She sighed deeply.....and drifted off."  My guess is that as the medication hit her system, it probably made her feel very heavy and that probably felt very good to her.

The scan was completed in an hour.  The Child Life Specialist and I had come up with a plan for waking up so that it was not scary and not stressful.  The bean bag, the weighted lead apron on her waist and legs, her own special blankie, and her paci.'s (one to chew and one to hold).

She woke up like no kid I've ever seen.  It was like she was waking up from a really nice nap.

Bean bag with lead apron

So, in recap Nea's day looked  like this to her......

"I saw my friend "A" and her cool play toys.  I went to the park for some fun with Mamma.  I met new people at Mamma's work.  The nice lady let me play with her iPad (must tell Poppa about that new app.).  The other nice lady let me snuggle with her (I was kinda sleepy).  I took a long nap.  I was able to get a wagon ride.  We came home and I ate fries."

Ernie was "the chosen one" for this experience

It was an amazing day.

Workin Wednesdays...Posted on a Thursday

We've had a family emergency that needed lots of attention, so information about therapy this week is a little behind.  


Overall it's been a good week for therapy.  Lots of work is being done and lots of progress is being made.  The developmental therapist that comes to the house writes this week...

"....really enjoyed coloring and became very engaged in it."
"Better with transitions without crying and stress."

Another session with "J" on Friday which I am hoping goes just as well.   I have no reason to believe it won't as long as she gets some good sleep in the night before.  (Yes, that's always a crap shoot!)

Occupational therapy with "A" on Wednesday was very physical.  I've learned now to put Nea's hair up in some way so that it doesn't fall in her face while she's flipping, jumping, turning, spinning, flying, etc. across the OT gym!

Nea's getting better with greeting "A" when she comes to the waiting room to get Nea.  She still hides her face a bit, but she will watch her with her eyes.   If you know this girl, you know that's a big step.  It's funny, she likes spending time with "A" and will keep eye contact with her, but initial meeting is still hard.

I sit in the rumpus room (that's what I call it) while "A" took her on a ride in the beanbag chair while riding on the scooter.  Then it was off to the ball pit.  I could hear Nea whining from time to time, so I know she was getting some stressors here and there.  Getting in the ball pit arms first seems to be a less than fun experience for her and she tries to avoid it.  Of course there's no way "A" is going to allow that. ;-)

Then it was a scooter ride like I've never seen!  This was a small brown scooter that "A" sat on and put Nea in front of her.  She then moved that scooter around and spinned it at the same time.  It reminded me of the carnival ride "the Scrambler."  She was turning AND spinning at the same time.  They were moving so fast, I couldn't even get a good picture!!  It was crazy and I thought I would puke just watching them.  But Nea had a smile on her face the whole time.

She ended all of that craziness with a bike ride, which of course is something Nea always enjoys.

Into the rumpus room (where I was waiting) and "A" had all kinds of things planned for her.

 This is a bowl with navy beans in it.  A great sensory exploration game that Nea actually had been exposed to in Fun Shop.  However, she avoided it like the plague and I never understood why.  Now that I understand she's a sensory kid, I guess it kinda makes sense.

She was hesitant at first about this play and fussed a bit.  But once she got a feel for it (no pun), she seemed to really enjoy it.  "A" was thrilled and took off her socks and shoes to get her feet in as well!  I think the plan next week is a bigger tub, because Nea wanted to sit in it all the way and really enjoy it!

The rumpus room has all sorts of amazing stuff in it with different levels, textures, heights, etc.  Through the tube, over the hill, across the mat, under the overhang.....all part of sensory integration.  Different surfaces teaches her body about space and proprioception.  

The tire swing was next on the docket, but we all know how that goes.  It just is a source of stress for her and she really starts flailing when "A" puts her in it.  She was crying so hard, and was so upset she actually said her first sentence!

After 2 or 3 spins in the tire swing, "A" finally stopped it and Nea reached out to hit her (oh my!) and screamed.......

"WHAT ARE YOU DOING!!????"  

"A" and I almost fell over.  We couldn't believe that she said a phrase, let alone THaT one!!  

Recognizing that Nea had reached a point of "can't take it any more" she went and got a different kind of swing.  Essentially it was a swing that you see at any park, but it has more boundaries for her body.  She's more enclosed and not have to worry about using her core to balance.  And oh how she enjoyed it!!

You have to understand "A" doesn't just swing you....she spins you and swings you and spins you the opposite direction just as fast.  Nea kept saying "weeeeee" the whole time and giggled and laughed. Good sensory integration (remember from my last post...that swinging thing is important) and she had an enjoyable time as well.  Win-win for everyone!!

Her speech therapy session went very well.  She listened well, had good scanning with her eyes, stayed engaged with Diana and repeated many words and phrases.  

We are still trying to incorporate the picture cards for communication.  It's a slow process and just takes lots of repetition.  Watching Diana is always a learning thing for me as well.  When trying to use the picture cards at home it was almost like they were toys to Nea and she didn't really get the concept.  Now we introduce them sort of like how we introduced signs.  So during this whole speech session Diana had some juice and fruit snacks.  Every time Nea reached for them, Diana would pull out the cards and and show her, repeating the phrases on them to make a sentence.

I      Want     Juice. 

Like I said, it's a process and is something we have to teach her so it takes time.  

Not every single day is a victory, but certainly we had many of them on this Workin Wednesday!

The Windshield or the Bug?

Wheww!  Therapy is getting tougher.  We knew they were going to push her and they continue to do so!  It's okay, pushing is growth....but it's also mentally exhausting.  We had many meltdowns today.

The past few nights have been well with sleep, getting in at least 8-10hours at a time.  Nea was well rested this am when we got to therapy.  She had a little breakfast and we were ready to go.  All good combinations for good therapy sessions.

OT works her hard!  Physical work.  Lots of physical work.  Rolling back and forth for some vestibular work as well as working on her core.  Rocking back and forth on this huge orange cylindar is both relaxing and exhausting.

We are working up to swinging.  Nea doesn't really like it.  In fact, she kinda really hates it.  It's taken her several sessions to even sit in the tire swing (it's a balance thing) and then as soon as "A" starts to swing it slowly side to side, Nea practically does a back flip to get out of it!

Laying back in it while it slowly swings (distracted by "A"'s cool toys)  helps immensely.  But trust me, she didn't stay longer than about a minute!  Why do we care about swinging?

Swinging helps her body organize and regulate her sensory system.  Getting vestibular input is paramount to sensory integration.  Your body's vestibular system gives your brain information about balance, movement, spatial awareness, position, etc.  It helps you maintain your posture, your balance, use your vision correctly and calm yourself.  Essentially it keeps you "even-keeled"  If it's out of whack (as in Nea's case) it makes for a very stressful day.

Some kids crave this sort of movement, while other kiddos are really sensitive to it.  Nea is one of those kids that's sensitive to it.  This is why the OT piece is so important...."A" directs it and controls it and gives her just the right amount without overwhelming her too much.

The bike is always a highlight and Nea gets better every time she's on it.  She's starting to move very fast these days!  We put our request in to get one, so hopefully we'll hear soon.  Not sure how many bike riding days are left before we hit the cold weather, but it will be ready for us in the spring!






I never really thought about OT and Speech working together, but as I watch these two disciplines work together it really does make sense.

"A" pulls Nea around on the scooter (sitting on a beanbag and covered with a heavy ladybug blanket) while Diana (yay!  I can use her name now!) works on words.  It's dual work.  Nea has to stay balanced on the scooter as it rolls and Diana uses it as an opportunity to teach Nea how to communicate her wants.  The practice the signs and words like:

Stop
Go
Wait
Want
....and put them all together....
"I....want....to....go."  Working on words is tough.  Working on sentence structure is even tougher!  We certainly aren't there yet, but the foundation is in place.

And if OT is physically exhausting.....Speech is mentally exhausting.

This is Diana and Nea in the speech work room.  I don't attend sessions anymore, but can observe from a different room behind mirrored glass.  (It's all very CIA like! ).

Nea seemed sorta spacey today, but Diana was happy with her work nonetheless.  She seemed less vocal and more like she was information gathering.  She's also head-tilting in this picture, which I think is her way of bringing in information.  She seems to do it a lot when she's trying to understand something.

Overall it was a busy, rambunctious day in therapy with lots of good work, and lots of homework to do.
We will be working on "Stop" and "Go" at home, which is important as we try to prevent Nea from bolting.  She will wander if left on her own, and she's so lost in her own world, I can't seem to get her back to get her attention.  So having a verbal and visual cue (Diana gave us a stop sign) to help reinforce.  This is one of the safety pieces we are trying to put into place.  Nea is VERY attracted to water, and she would just walk right into any pool, pond, lake or river.  Water is very comforting to her and soothing.  However, it is also the leading cause of death in children with Autism.  She's not aware of any danger and many times not aware of her surroundings.    And it's one of the number one reasons I would like to get her a therapy dog.  I'll talk about water and wandering in another post.

So even though the day started out so positive, and therapy was good (although tiring) her coping skills were just not available to her today.  This means that she sits at DefCon 6 pretty much all the time.  So trying to get out the door looked like this.....

I feel really bad for her when she's in this state because I just hate that she's in some sort of inner turmoil.  Of course I comfort her and hug her.  That worked for about 2 minutes, and then she was on the floor again in this state.  She did this from the therapy door, all the way to the front lobby.  Screaming and crying and flailing the whole time.  And, because she doesn't have good upper body strength (especially her arms) she did quite a few face plants.

Keep this scenario in mind when you see a mom struggling with her 2 year old at the grocery store or the mall.  The initial thought always is, "Uggh...what a bratty kid!"  Maybe that is the case, and maybe it's not.  Please don't judge.

Eventually we made it to the front lobby and I was exasperated.  So I finally gathered my thoughts (I'm surprised I had any at this point) and sat down on the couch.  We had her backpack which has her iPad in it and I pulled it out as a last ditch distraction for her to be able to get herself together.

Successfully pulling herself back together

The plan was to go swimming today after lunch.  But, after all this mornings work and stress and tears..... she just didn't have it in her.

When she finished lunch, she found the beanbag chair, pulled it to the room, grabbed her "kee-kee" and.....

Some days you're the windshield, and some days you're the bug.

Let's hope we have less bug days.  They are tough!

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!

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.

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!