ASD Evaluation

Monday was the big day - Amelia's Autism Spectrum Disorders full evaluation at Fraser.

Playing in the waiting room

It went spectacular!

We received the greatest news we could have hoped for - they no longer believe she is on the spectrum!

Long story short - she has the cognitive capabilities of a 4-year-old with the speech and language skills of around an 18-month old.  This gap is causing her a great deal of frustration which is bringing out certain behaviors and characteristics in her that are classic "signs" of autism. 

We are relieved.  Life just got a little bit easier.  We still have a child we cannot communicate with but we don't have the uncertainties that would have accompanied the official autism diagnosis.  Her organization and "bossiness" is likely an attempt, by her, to control something in her world.  She has little to no control over anything around her because she is unable to communicate her needs to anyone which I'm sure only adds to her frustration - and ours.  

Our next step will be to have her evaluated by a speech pathologist to determine exactly which type of disorder we are dealing with so we can move forward.  The suspicion is that she will continue with the school district's pre-K speech program as well as having intense, individual speech therapy with someone at least once a week.

We will also need to continue practicing extra patience with her.  Getting angry with her will do no good.  Currently she is not able to communicate much of anything and instead of getting frustrated and raising our voices we need to take a step back, relax and try to work through tantrums with her.  Most are likely a result of her not being able to communicate something.  She doesn't deserve to be punished over that.  She needs patience.  It's hard but I know I have been getting better with it.  It takes practice and believe me, I get a ton of it between work and home!

I have been thinking about all that we have learned about autism these past few months and I remembered the differences between a medical and educational diagnosis.  For educators to label a child as having autism they need to be delayed 25% in two or more areas of learning.  Amelia falls into that category.  I am positive that the school would have eventually labeled her as having autism, therefore, limiting her.

We went to medical professionals who really dug into things with us, worked with us and saw more than just the delays in our child and autism has been ruled out.  They had several reasons that they do not believe it is autism, despite the fact that she fits a lot of the tell-tale "signs".

I feel like a weight has been lifted from my shoulders.  We still have a lot of work ahead of us but it feels more manageable now that we are merely looking at a speech disorder vs her living with autism the rest of her life.  I am very thankful that this path we have been on has changed directions! 

Feeding Consultation

This morning I spent two hours on the phone with specialists at the Fraser Center.  By far the most important part of the morning was when I spoke to someone regarding feeding and mealtime.

Amelia is a picky eater.  I've heard people tell me, "if she's hungry, she'll eat" more than once.  It always upsets me because I (and Jason) know her better than anyone and I realized early on that that wasn't necessarily true with her.  In fact, it was one of the first things that I brought up this morning and I shared that I didn't feel that it was the case with her.  The therapist I was speaking with couldn't have agreed more - some kids will not eat, even if they are hungry.  

Children that have a sensory issue often will not eat if they are "hung up" on something.  Amelia is a very visual child - especially when it comes to eating.  Example?  If you give her a piece of cheese and it is not whole, she will not eat it because it is "broken."  If something is visually off to her, she will not eat.  Even if she is hungry.  You cannot make her eat it.  

With all that being said, here are some things that we will be working on with her:

• Offering smaller portions.  Children with sensory problems, especially visual ones, can often feel overwhelmed at the sight of too much food - even if it is a familiar and accepted food.   
• Offer our meal in small portions alongside her chosen meal.  If we are having tacos and she would like Macaroni and Cheese, we will make her the macaroni and offer her some taco fixins' on the side.  I imagine her divided plate will be very useful in doing this!  
• When offering new foods, do so with zero expectation.  By not putting pressure on her to eat the foreign foods the idea is that she will get used to seeing certain things on her plate and one day she will probably just try it on her own.  *All we can do is try with this one.  It is clear that the pressuring her to eat new things does not work!  In fact, all it accomplishes is her leaving the table upset and not eating a thing.
• Setting the table.  We plan to teach her to set the table for everyone who is eating.  Why?  To put a stop to this:

November 2011

One of Jason's biggest issues with mealtime is the fact that she brings every piece of her flatware to the table.  (I've sort of let it go at this point.)  We've tried hiding some of it but she knows it is gone.  We've tried giving her just one fork and one spoon but she needs it all.  We are going to teach her that each plate gets one fork and one spoon and then we are done.  They think she needs it all there because to her the drawer being empty signifies "done."  We need to teach her a new "done."  

• Bridging.  In order to get her used to new flavors we will blend it with things she likes.  One suggestion today was marinara sauce.  She will sometimes eat it but often won't.  It was suggested that we blend it with ricotta cheese to turn it more pink.  We know she loves cheese so having the cheesy flavor will likely make her enjoy the "pink" sauce.  Over time we would reduce how much ricotta was mixed in until she was just eating straight marinara.  Another example of bridging would be in changing one element of an accepted food.  An example would be pasta.  We know she loves pasta so try different colored pasta.  I have actually done this.  I got her orange  farfalle vegetable pasta (tomatoes and carrots) because I wanted to get some more nutrients into her.  She refused it because it was orange.  Once she had an interest in butterflies we revisited this pasta and now she loves to eat "orange butterflies" for dinner.  In this example I changed the color of the pasta but I also related it to an interest of hers which I was told to continue doing whenever possible!
• Small utensils for small tastes.  Offer her teeny, tiny tastes of new foods on toothpicks.  If she tries it, great!  We're opening the door to trying new things - even if it is just a microscopic taste.  The important thing is that she let her guard down and tried it.  That's what we want.
• Juice.  I was informed that juice can sometimes trigger hunger in people.  She compared it to soda drinkers tending to snack more often - the sugar makes them hungry.  By offering a small amount of juice thirty minutes before mealtime we may be able to remind her body that she is hungry.
• Limiting milk intake.  This is something that we have been doing for quite some time now.  Amelia loves, loves, loves her milk.  She would drink it all day, sun up to sun down, if we let her.  Now we give her some at each mealtime whether she eats or not.  She also gets a cup between meals as well as one at bedtime.  She was filling up on so much milk that she was not hungry at all - ever.  Her speech therapist actually was the one that suggested we do this and it has worked great!  Plus, her overnights don't leak nearly as often anymore ;)
• Food groups.  It was suggested that we try to get her to eat her way through the food groups weekly vs. daily.  At this point she is nowhere near getting a meat, dairy, vegetable, fruit and grain each meal or even each day.  The weekly goal seems much more attainable to me and as we work on building her menu this will come more easily - I hope.

As you can see, we have a lot to work on!

ASD: 101 Workshop

This past Thursday afternoon, Jason, my dad and I attended an Autism Spectrum Disorders 101 workshop at Fraser Center.  This workshop was recommended to us at our pre-assessment appointment back in March.  The class is meant to give families and caregivers a better understanding of the characteristics of ASD, the diagnostic process and to introduce some of the intervention opportunities that are available.  

Something that I found very interesting was the difference between a medical and an educational diagnosis.  In order for the school to evaluate a child they have to have a 25% delay in at least two areas.  With a medical diagnosis there are no qualifiers that need to be met for evaluation- just the suspicions of doctors and family.  The example she gave to us was a young student is labeled ADD/ADHD and ten years later they are diagnosed with Asperger's.  Because they were not delayed in enough areas while in school their Asperger's went undiagnosed.  

One thing that we talked about a lot was scheduling.  Schedules organize the world and reduce anxiety.  From dinner time to bedtime I have Amelia on a loose schedule.  What it entails is: eating dinner, watching Netflix and/or playing with Joe while mama picks up the kitchen, reading a book/playing something with mama and Joe, bath (sometimes with Joe), diaper-lotion-pajamas in mama's room, pick out a movie while mama gets "two cows" (white and chocolate milk, mixed) and then getting settled into bed to watch the chosen movie.  If I deviate from this "schedule" it can get ugly.  It took me a long time to figure out that bath seems to be the key to a smooth night.  To me, it seems that her bath triggers her to realize it is time to calm down and relax.  The nights that bath doesn't happen, she is often up until eleven, even midnight.

There are many ways to help with scheduling involving the use of visual tools.  We were introduced to several that we liked and are hoping to incorporate some into our daily lives at some point.  We are waiting to schedule a visuals consultation with someone through Fraser (read - mama just needs to call her back...) and there is also a workshop that we can attend.  By doing these they can help us tailor some of the models to work with us, and Amelia, best.  More to come on that!

Let the small things go and focus on the important things. 

This is something the teacher said more than once and something that I have been trying hard to remember - long before we took this workshop.  I have always been an ordered person.   I like things neat and in their place.  Clutter drives me nuts!  With children that changes - obviously!  

This mantra needs to carry into all parts of our lives though - not just in regards to having a clean, neat house.  If Amelia won't eat what the family is eating is it really the end of the world?  No.  She wants to wear her Dora Halloween shirt in May?  Why not.  We need to focus on the big picture.  Traditional parenting is essentially out the window.  We've been encouraged to find what works for us and stick to it.  

Here is what we know works for us - keeping frustration levels low - in all of us.  We have a child who is unable to effectively communicate with us very often.  Either she lacks the vocabulary needed or we are unable to understand what it is she is trying to say.  Frustration levels around here elevate at a ridiculous rate some days.  So if she wants macaroni for dinner and we are having tacos?  She can have the macaroni.  We will still offer our meal with hers but if she only eats the macaroni, that's ok.  She ate.  There is no sense in driving up everyone's frustration levels over something like macaroni vs. tacos.  When frustration levels are elevated communication suffers and since we already have a hard enough time communicating we don't need to make it worse over the "little things."  *We have a consultation regarding food and meal time scheduled through Fraser.

I have heard from some people that they think we are too "soft" as parents or that we "give in" to her too easily.  Here's the thing - we are doing what works for us.  If we play "tough love" with her she does not learn anything.  We do not accomplish anything.  All that happens is everyone is frustrated and upset and there is crying and yelling.  In fact, the one time I tried to be "tough" with her at bedtime it resulted in her getting progressively more upset to the point that she threw up.  Yep.  Eleven o'clock at night and she threw up which meant a quick bath and bedding change.  I had been up 21 hours at that point and had to be up in 4 more hours for work.  Sorry, that does not work for us.

We learned a lot at this workshop.  A lot more than I wrote about here.  At times it is overwhelming but there is not a whole lot we can do except educate ourselves and continue to practice patience.  

While we were at this workshop, Nana (and later Auntie Kim joined) babysat the kids!  Amelia and her read The Cat in the Hat several times it sounds like: