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

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

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

Okay, I digress.

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

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

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

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

....I could go on.

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

For example....

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

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

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

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

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

Look, I'm full circle.

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

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

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

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

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

Well,that's the road to acceptance.

Working with the Medical Team

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

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

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




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

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

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

Floating down......

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

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

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

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

Who wants a carrot?

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

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

Weekend crankiness

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

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

Karen, Chica and Nea at Jamba Juice

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

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

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

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

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

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

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

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

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

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

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

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

Mommy Milk and Oxytocin....PLeASE!

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

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

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

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

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

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

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

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

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

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

Our Meeting

It's been an exciting day around here!

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

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

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

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

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

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

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

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

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

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

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

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

Did I mention I really liked the social worker?

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

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

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

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

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

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

Of course, I didn't say that.

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

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

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

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