Disney's DAS versus GAC and Why We Really Didn't Notice (Too Much!)

This summer, we decided to put together an impromptu trip to Disney World for 4 days. We started planning the trip in July and our departure date was August 2.  Normally, this would not work for me because I like to have all of my ducks in a row at least 6 months in advance but with the help of Rebecca at Wishes Family Travel, we were able to put the trip together relatively quickly and still got to do most of the things we really wanted to do. (No Be Our Guest or Cinderella's Table--book those 6 months out as suggested!)
We had taken the girls to Disney about a year-and-a-half ago and we used the Guest Assistance Card with Imma. We loved it. She was able to get on just about any ride she wanted to with limited wait time, which is perfect for a child with her disabilities who has trouble understanding why she has to wait and who struggles to leaves others alone while standing in a line. (Really, it's just as much for the other people in line as it is for us! Who wants to listen to a child screaming for an hour while they wait to get on It's a Small World?) Since that time, Disney has changed the way they assist those who are differently-abled.  They now call the system Disability Access Services. It works differently in that your child is given a paper card, sort of like a passport, and he or she can get a wait time for one attraction at a time.  So, Imma had her paper and Daddy could run to whichever ride she wanted to ride next, get a time, and we could go do something else. We were skeptical that this would work for us, but it did, and I'll explain why.

Our plane ride to Orlando

It seemed like a long flight!

 

The first time we went to Disney with the girls, it was also before Fast Pass +.  We didn't use the old Fast Pass system with the GAC, we didn't need to. This time, however, we were able to use our Fast Pass + rides in conjunction with the DAS and, for the most part, Imma didn't have to wait in line to ride anything. She may not have been able to ride exactly what she wanted to when she wanted to but there were not a lot of meltdowns waiting, as I had imagined there might be.  I will give you a run down of our first day at Magic Kingdom so you can get an idea of how it worked.
First of all, we got there at "rope drop," which happened to be at 9:00. The girls loved watching the opening ceremony, even though Imma is still pretty afraid of people in costumes and of fireworks and there were both, but she was okay. We found out on the way to Orlando that Imma really wanted to ride the  new Seven Dwarfs Mine Train Ride.  We did not have a Fast Pass + (from now on I will just say FP) for this ride because I didn't think she'd like it. Our plan was to go straight to that ride and ride it first. However, by the time we got there, the wait was already 75 minutes and that was not happening. So, Brian and Imma went to get Imma's DAS while I started riding rides with Lucy. That early in the morning, there really weren't a lot of people there yet (except for the hundreds in line waiting to see Dopey!), so we were able to walk right on most rides, including Dumbo, Mad Hatter Tea Party, and Prince Charming's Carousel, with just a few minutes wait at Winnie the Pooh. Then, I took Lucy to meet Cinderella and Rapunzel at Fairy Tale Hall with a FP while Brian took Imma on Winnie the Pooh with FP. By the time we were done, we were able to walk right over to Seven Dwarfs and get in the FP line with the DAS.  There was just a short wait. Imma loved it so we knew we would be doing that again.

Lucy's new favorite--Small World. That song won't get stuck in your head!

Riding Dumbo with Lu

And Winnie the Pooh--she was scared

We love the horsies!

Cinderella was so sweet!

We went to get a DAS time for Peter Pan and then wen to It's a Small World and used the regular line because the wait was only 15 minutes.  Then, we rode Peter Pan and used a FP for Dumbo.  We got another wait time on the DAS for Seven Dwarfs and rode the Mad Hatter Tea Party together. After some ice cream, it was time to ride Seven Dwarfs again. Since Lucy didn't like it, we did Ride Swap and Imma got to ride it twice, once with Mommy and once with Daddy.
Next, we ate lunch at Tomorrowland and then headed out to find a spot for the parade. This was definitely the worst part of the day for us because it was so hot and we just couldn't find a shady spot. This is also where we encountered the rudest people of our trip. Imma was walking around with her head phones on, a clear indicator that something isn't quite typical about her, complaining that she can't see and yet an almost seven-foot tall man comes and stands directly in front of her, right on the edge of the sidewalk.  She got very upset and he just gave her dirty looks instead of realizing he was a giant standing in front of a group of children who were trying to see a parade designed for them. I really hate it when people are inconsiderate, regardless of whether or not it's obvious my daughter has special needs. But, we made it through the parade, despite the people in costumes, the loud noises, and the dragon. Then, we went to take a nap  the Hall of Presidents to cool off.  Lucy ended up falling asleep and it began to rain outside, making it cooler but also incredibly humid.
We used Imma's DAS to ride Haunted Mansion, which the girls hated. They liked it last time but it had some changes so not quite sure if that's why.  Imma and Daddy used FP to ride Splash Mountain, which Imma loved, so they got it on her DAS to ride again. Lucy and I went to ride Aladdin's Magic Carpet and get Tiana and Naveen to sign her hat. (We decided to do a hat this time instead of a book.) Then, we all met up for dinner at The Plaza. Our reservations were originally scheduled for 8:30 but we didn't think we would make it that long so we asked them to get us in as quickly as they could and we ended up getting in at 7:00 or so.

Riding Dumbo with Imma

Tiana is Lucy's favorite princess. Naveen was the only prince we met and he signed her hat.

Mickeyoldeon's for desert at The Plaza

So, here are my thoughts regarding the change from the GAC to the DAS. Is it the same? No. Does it work? Yes.  Will your child understand the differences at first? Probably not. I had to keep telling Imma, "Daddy has to get it on your paper first and when your paper say it's time to go, we can." She constantly wanted to know what time it was and what time the paper said. But we were able to keep her busy with other rides most of the time, especially when we had our FP to use.  I will say we had a lot less trouble with other guests giving us dirty looks for "cutting."  They all just assumed we were using a FP.  And we had a lot less trouble with cast members as well.  Before, we had some that would roll their eyes or give us dirty looks when we tried to use the GAC. I didn't see that at all this time and, in fact, a few of them were so accommodating, they just let her go ahead and get in the FP line if it was long. The way it is supposed to work is, the cast member looks at the wait time, subtracts ten minutes and then writes the new time on the card. However, a couple of them said, "I'm really bad at math," and just wrote down a time about 15 or so minutes from the time we had arrived. This was especially true at Animal Kingdom where the big rides, like Expedition Everest (which Imma loved) and Kali River Rapids have long wait times in their FP lines as well. Did the DAS prevent meltdowns completely?  No, but even our typically developing daughter had some of those.  It was hot and we were all cranky, that's when meltdowns are mostly likely to occur in my experience. But Imma got to ride a lot of rides and she was very happy at the end of the day, and that's what matters most.
I read a lot of reviews of the DAS before we decided to go and I that included  a lot of really nasty comments from people who do not have kids with disabilities.  The biggest argument I read was that Disney isn't the righter-of-all-wrongs and that they don't have to accommodate our children with special needs at all.  And I agree with that--they really don't have to. However, when parents start saying, "it isn't fair that your kid gets to go on 20 rides while mine only gets to go on 10," I would like to say, your kid is probably going to last a lot longer at the parks than mine will so, what you can stretch out over the 15 hours the park is open, I have to cram into usually about 7 hours, though on this particular day she made it a lot longer. You can probably work in all of those rides if your child will last longer.  Mine won't. She can't handle all of the sensory overload--the noises, the "threats" of being snuck-up-on by a cast member in costume, the bright lights, the crowds--and the fireworks. She is terrified of those and there's not explaining that away. No, Disney does not have to do anything for us but, the fact that they do, is one of the reasons why they can maintain their status as the Happiest Place on Earth. My best advice to those who do not have special needs children--if you can't say something nice, don't say anything at all. If you didn't like the GAC because you felt like we were "cutting" in line, then make the argument from your own perspective, not ours. For example, "I don't feel my child should have to wait so long while it appears other children are not waiting at all."Not, "Your kid gets to skip the whole line just because there's something wrong with her." Believe me, I would stand in a line a thousand times longer not to need the DAS or the GAC or the therapy or all of the other things that we have to endure!
Honestly, I am hopeful that this new card is more fair to everyone and that those who complained before will accept it as a compromise that works in their favor.  And, Disney is dissuading a lot of people from getting the new card in the first place. They asked my husband several times if he was sure it would help when he went to get it because they don't want to hand out so many.  We knew it would help--and it did--so we got it. But it won't work the same way for everyone and it won't work the same way as the GAC. I did hear one parent ranting at a cast member for an extensive amount of time about how horrible the DAS is. She tried to draw another mother and I in to the conversation saying, "It's a waste of time, isn't it?" I calmly said, "Honestly, you're the one wasting my time right now. I've been waiting for five minutes to let this lady fill out my card while you're talking to her." Sorry, lady,  but I disagree. DAS saved us time over other theme parks who have no accommodations (like Silver Dollar City, where we visited in July) and I am not going to knock it.  It worked for us.
Now, I would love to hear your experiences with both the GAC and/or the DAS.  What do you think? And, what did your kiddos think of the Seven Dwarfs Mine Train? We are still singing, "Hi-Ho, Hi-Ho, it's home from work we go. . . ."

So You HOPE You Can Dance

If you've been reading this blog for a while, you know that we are striving for "normalcy" whatever that is.  Part of being "normal" for us is doing things that typically developing kiddos do. We used to go to therapy several times a week while we listened to others talk about hauling kids to softball practice and dance. I vowed that, one day, Imma would be able to do those things, too.  At the time, I don't think I realized that it wasn't that far off.
Lucy took dance last year and loved it.  And she is an AMAZING dancer (okay--I may be a little biased. I am her mother, after all)  But when all of the other 2 year olds were crying, Lucy was the lone-dancer, completing her routine like a pro.  So, I didn't hesitate to sign her up for dance again this year.  But this year, things were a bit different. Lucy used to attend dance at her daycare and she wasn't going there any more.  So, if she was going to keep going to dance, she would have to do it in the evening. Which meant Imma would be able to go, too.  Except, I didn't know if Imma could do it.  I hesitated to sign her up because I just had no idea how she would react.  We started off with a baby step, Dance Camp last summer. It was one day a week for four weeks. Imma complained sometimes ("We're not going to dance!") but she went and she liked it. So, I talked to her dance teachers last fall.  Was she doing okay?  Was she listening? Was she keeping her hands and her teeth to herself?  They said she was struggling a little but she was trying.  She wasn't always able to keep up.  They didn't know if she could handle the class with the girls her age because they had all had dance before.  So, we compromised.  We put Imma in the 4-5 year old class.  Some of these girls would be turning 6 and Imma is a little short so it shouldn't be too obvious that she was a little older. And then, I held my breath--for 9 months.
Throughout the year, there were a few incidents where Imma didn't listen. Once, she accidentally hurt a friend.  And once she didn't earn a "smelly."  I asked how she was doing and I was told she was doing "fine" or "okay."  She was making it.  You see, we aren't allowed to watch them dance.  They are in closed rooms.  We can only guess at how they are doing.  Then, at Christmas, we were allowed to watch a routine. This was our present.  She did really well!  She hammed it up for me and the camera but I was impressed and a little relieved.  Still. we had several months until the dance recital and I wasn't sure how she would do onstage.  Though she did a great job as a dancing frog in the first grade musical this year, this was different. This was choreography! And I was reminded of a melt-down two-year-old Imma had when she refused to sing Twinkle Twinkle Little Star at a recital once.  So, I still wasn't sure how it was going to go.

My two dancing girls

And finally, the big day arrived. We were almost late!  I hate being late but it was raining and I was struggling to get Imma's make-up right.  When we finally got out the door, we had 15 minutes to make a 30 minute drive and we just weren't going to make it. Luckily, we got there in time to drop the girls off.  The show started promptly at 6:00.  My girls' routines were towards the end. Lucy's class went first. Of course, she did amazingly well, as I knew she would. The whole class did a lot better this year, only one crying child. Lucy looked gorgeous and blew kisses and did all of the things that make a mommy want to stand up and yell, "That's MY girl!"

Princess Lucy posing for the camera

Who wouldn't be proud of this little cutie?

Then, it was time for Imma's class.  Imma had already torn her tights (Daddy was able to hide it) and her lipstick looked a little like we'd put it on in the dark, in a moving car, on a roller coaster. But you couldn't really tell from the audience.  The curtains opened to Imma's class of girls sitting on little crates, legs crossed, shoes ready to tap.  She was in the back--in the middle--right in the middle.  My immediate thought was, "Why aren't they trying to hide her??"  Well, they didn't need to.  They started off with a cute little tapping, leg crossing, switching thing.  Then, they were up and tapping, back down, one leg on the crate, then switch, etc.  She was doing it! She was dancing!  She was doing the same thing as everyone else. Then, there was a part when they shimmied to the right.  She was away from her crate and the spacing was a little off.  I was scared she would accidentally take the wrong crate!  But, she didn't! When they went back to their crates, she found hers.  She finished the routine and I was the proudest mama you could ever imagine!  I remember thinking, "You can't even tell there's anything 'different' about her!"  She was just like everyone else.  Not perfect but perfectly wonderful.  This was an amazing accomplishment for us. We had proved that Imma could do something just like other children.  She was very proud of herself as well. And the first thing she said to me after the recital was, "No more dance.  Dance over!"  You bet, kiddo--until after the summer anyway.

After the recital. Imma was so happy and Lucy kept saying, "Okay, Mommy, that's enough!"

As I am typing this, I'm thinking of the next challenge we would like to take on. I know that Imma would love cheerleading but we're not ready to tackle that yet.  There's just too much dependency on everyone doing the same thing.  That being said, I don't think it's too far off. I think she'll be able to do it very soon.  In fact, I think there's nothing she can't do if she wants to.
This year, she's played basketball, softball, and danced in a recital.  She's learned to read, done extremely well in math also, and made some great friendships. Her amazing teacher has taught her so much--not just academics but social and emotional skills as well.  I am so very proud of her and I can't wait to see how she does in 2nd grade--but we'll be waiting until the fall on that one, too!
Our next adventure will be a trip to Mexico on a cruise ship.  I know my girl can do it.  She can do anything she puts her mind to!
What has your special kiddo accomplished that has made you extremely proud?

5 Lessons I've Learned About the "A" Word

My heart is breaking for a dear friend of mine who is walking a path very similar to the one I am marching along.  Today was her culminating day, that day when the cold-hard truth slaps you in the face and says the word you've been dreading for months and years.  It is one thing to hear medical professionals, educators, and diagnosticians talk around the possibility that your child may have autism. It is quite another thing to see that word written on a piece of paper under your child's name--written in ink, in un-erasable, unforgettable, permanent ink.

Of course I know how my friend feels because I have gone down this road before.  I remember feeling sick to my stomach, angry, disheartened, deplorable, and hopeless.  As much as I wanted it to feel like a simple diagnosis, akin to "flu" or "near-sighted" it felt more like a death sentence, like my family was being destroyed and there was nothing I could do to ever regain the picture of happy-normalcy I had been dreaming about for so long.

I am now at least three years further down that road than my friend is and I have learned so much since then. I want to take this opportunity to share some of those lessons with her and with all of you who may be in similar circumstances where you feel hopeless and ready to give up.  There are so many reasons why you need to keep on marching. And here are a few.

1) Your child is the same beautiful person he or she was before the label.

Sometimes, labels make our lives easier.  Like, for example, when you are at the grocery store and you need to buy a can of corn.  Without labels, you could end up with green beans, carrots, or, God forbid, beets. But just as the label on the can of food cannot tell you exactly what is in that can, a label on a child doesn't tell you every single thing about that child.  Not all canned corn looks, tastes, or even feels the same. They are all different in some way, just as every child--special needs or otherwise--is different.  The day my daughter was officially labeled as "Autistic: Early Childhood Non-Categorized" she did not become a different person. She was still the same brilliant, moody, beautiful, silly, letter-loving child she was the day before.  She was suddenly eligible for a different type of education, which in many cases is a good thing.  But she wasn't any different.  In the case of education, having a diagnosis or an official "label" should be for programming purposes, not for identification.  Educators should never be grouping children together, implying that all autistic children are the same.  I have known dozens of children on the autism spectrum and while I have sometimes been able to understand certain behaviors or predict certain outcomes for one student because I am familiar with the habits and behaviors of others, I have never met any two autistic children that were remotely "the same," just as I have never met any other two children that are exactly the same. Likewise, we should never assume that the programming that works for one child will certainly work for another child simply because they have the same label. Just because a child is eligible for a certain program does not mean it will always be effective.  My own child is a very good example of how this is true.  She was eligible for a structured-teach or autism unit classroom but I knew that would not work for her and chose to put her in a regular general education classroom with inclusion and resource support,  which worked brilliantly for her.  So, while there are some instances where labels are necessary, as parents, we cannot allow them to define our children--not to educators, other parents, peers, and certainly not to us.  

My beautiful, extraordinary daughter, Imma-Jane

2. Wishing your child didn't have a label does not make you a bad parent.

Over the years, I have read lots of parents posts that say things like, "I'm so glad my son has autism because if he didn't, he wouldn't be the same wonderful child he is today."  If you truly feel that way about your child, then more power to you.  I don't judge anyone who  thinks that because they have every right to feel however they wish about their child.  I, on the other hand, hated autism every single second of every day that it was in my life.  I woke up every morning cursing the word and went to sleep every night literally praying for a miracle, that I would wake up the next day and my daughter would be normal. If you think that makes me a bad parent, that's okay.  You're allowed to think that.  But you see, I could hate the condition and not hate my child because, in my interpretation, they are two separate things. My child is the wonderful, brilliant, loving spirit that she is--and she was being horribly hindered by this ugly thing that was preventing her from truly experiencing life.  She was never going to be able to talk, to understand, to read, to have a meaningful friendship, to enjoy fireworks, to sit on Santa's lap--if she couldn't get away from this cursed condition. I didn't want to change who my child was, I wanted to break down the barriers and limitations that were impeding her. Now, three years later, after having learned that she was never truly autistic in the first place, I'm glad that I fought a hard battle against that label because if I had chosen to accept that she could not escape the clutches of that diagnosis, then she may very well have continued to spiral downward and further into the spectrum.  Please don't misunderstand--I am not at all saying that I believe all children on the spectrum have a lesser quality of life than other typically developing children.  I know many autistic children who have no problems functioning whatsoever and seem very much like their typically developed peers. But in my child's case, the differences she was demonstrating were hindering her quality of life and if we hadn't successfully found a therapy to help her, she would have continued to grow further away from her non-disabled peers.

The bottom line is, once your child has been diagnosed as having a disability, it is okay to grieve for your child. Not the child you have, but the child you thought you would have. If you don't allow yourself to go through the grieving process, you will never be able to fully move forward and help your child find ways of progressing.  And without you, your child will not make progress.

3. Special is Extraordinary

While there are many aspects of autism that make life incredibly difficult to navigate, it also has a way of making life extraordinary.  I know so many children with autism who also have remarkable gifts.  My own child, for example, can put puzzles together without even looking at the picture.  She just looks at the shape of the puzzle piece and can grab the right one out of the box and place it perfectly and effortlessly.  I had a kindergarten student who taught himself to read in a matter of days.  One day, he couldn't read.  The next day he was reading on a second or third grade-level.  This is called hyperlexia and there are many autistic children who have some form of this amazing skill.  Even when we are unable to detect the gifts these children have, whether it's because of limited communication or masking from some other disability, they are all precious, truly unique individuals.  It takes an incredible person to be able to recognize the strengths of children with limited or no communication skills and to be able to capitalize upon these strengths. These are the types of people we must be looking for when we select therapists, child-care providers, and educators for our children.  Though we now know Imma is not autistic, she does have sever language processing disorder.  Essentially, it is very similar to being in a foreign country where you only understand one out of every ten to twenty words.  Can you imagine living in this type of situation?  What if you went to work tomorrow, met your boss at your desk, and the only word you could understand was "computer"?  How would you do your job?  You sit down at lunch and the women next to you says, "Hi! Eat. Chair.  Dog." How would you have any idea that she really meant, "Hi!  What are you having to eat? Let me scoot my chair over.  I was just telling Jenny about my new dog."  That is every minute of every day for my baby. And yet, we are at the point now where she is actually fooling people!  When she meets someone new now, sometimes they don't even know that she has a disability! Try telling me my baby isn't extraordinary.  

As parents of children with special needs, we need to be ambassadors to everyone, spreading the word that special is extraordinary.  If we don't carry that mantra in our hearts and live it everyday, then people who aren't familiar with these amazing people we care so much about are never going to understand their journeys.

4. Autism is not a four letter word.

Even though I know the pain of seeing that word--or any label that represents a disability--associated with a loved one, I think it is imperative that we hold in our hearts that this word is not a definition and despite what I said before, it's not a curse.  I described how I felt about the word being associated with my own child so I know how difficult it is not to focus on the negative--I certainly dwelt in that land for too long. But the more we talk about autism, the more we focus on the gifts and the positive aspects of our children's character, the better the chances are that others will truly be able to understand the true nature of the disability.  Most people really don't understand that autism is a spectrum disorder, they have stereotypical images and thought about people on the spectrum. I've read a lot of ignorant comments on social media sites, drawn from misconceptions and inaccurate information.  Let's really start talking about autism spectrum disorder--and attention deficit disorder, and dyslexia, and language processing disorder, and everything else--so that more people will be informed and some of the misconceptions and fear will dissipate.  If we are afraid or ashamed to talk about the nature of our own child's differences, how can we expect those who do not live it and breathe it every day to talk about it intelligently?

5. Hope is never hopeless.

There's been a lot of talk recently about a certain celebrity giving "false hope" to parents of autistic children because she claims her child was "cured" of autism and, since there is no cure for autism, parents are being led astray.  I've read a lot of comments from well-meaning parents who firmly believe that we will never find a "cure" for autism and it is wrong to hope that children will ever be "normal."  And, while I rarely curse, I'm going to have to call BS on that one.  I say, if people want to hope, let them! How can anyone know if there will ever be a "cure" for autism or not?  We once thought there would never be a cure for AIDS and look how far we've come with that disease.  As long as parents are continuing to look for valid treatments for their children, finding ways to make progress, and fighting the good fight, then what harm can hope do anyone?  If we are looking at this purely from the perspective of having a child who was once diagnosed with autism who is now no longer diagnosed with autism, then I actually know more than one child (including my own) who fits into that category.  I am not saying that my child once had autism and now no longer does because I am of the opinion that my child was never actually on the spectrum to begin with, but she did have a label and now she doesn't. I also believe that, if my husband and I had not chosen to fight against the programming recommended for our daughter, she may very well have tested on the spectrum eventually because the therapy she was receiving had stopped working for her.  We were hopeful that we could find a new therapy that would help her learn how to communicate and socialize better so that she would no longer show signs of autism, and through that hope, we were able to make some changes that led to the result we had hoped for. Hence, hope can be a beautiful thing and I am of the opinion it is always helpful to be hopeful.

I do not pretend to know everything there is to know about parenting a special needs child but I do hope that others can learn from the experiences I have had. If even one parent reads this and feels a little bit better--a little more hopeful--for the future, then it was certainly worth the time and effort it took to write it. Please remember, Warrior Parents, you are not in this alone.  Just keep marching, keep putting one foot in front of the other and eventually, you will look back at where you are today and think, "I can't believe how far we've come!" Your child is worth all of the time, energy, resources, money, exhaustion, anger, sadness, hopelessness, hopefulness, and love you've poured into him or her. If I am ahead of you on this journey, I am happy to pull you up to where I am in any way that I can. If someone is behind you, please turn around and show them the way because we cannot do this alone. God bless all of you as you travel this jagged and windy path and please let me know if I can be of any service at all.

Autism Awareness Day

Today feels much different than Autism Awareness Day has the last two or three years.  Last year, I celebrated Autism Awareness Day as the parent of an "autistic" child. Today, I celebrate as the parent of a special needs child, but not an autistic one.  This doesn't make the cause any less near and dear to my heart, but it changes my perspective.  And I am thankful for this change of view.
You cannot be told that your child has autism, live that life for two years, and not be changed.  It's kind of like taking a journey, having your car break down, spending a lot of time in a town you never intended to stay in, and then continuing on.  No matter how long you spend in your ultimate destination, you'll always have the memories from your unintended visit.  And that's how I feel about autism.
Today isn't just about spreading awareness of an enigmatic disability, it's not just about celebrating some of the most amazing people I've ever had the fortune to know, it's not just about lifting a torch of hope that someday all parents will be on the other side of autism, it's about being thankful.  As much as I can respect the idea that taking autism away from a child would change who they are, I've never been a proponent of proclaiming I'm happy my child has these differences because that's what makes her special.  I'm not happy that my child struggles to communicate, can't process simple language, still doesn't know which pronoun to use, hates fireworks because they are too loud, only drinks water, and can't stand to see colored tiles unsorted and stacked.  I want her to continue to overcome the obstacles that have prevented the world from knowing all of the amazing thoughts she has trapped in her perfect little mind.  Though our struggles are far from over, I am thankful today that I can no longer consider myself the parent of a child with autism.  Hopefully someday, either through a cure, life-changing therapy, or situations similar to ours where autism turned out to be something else, many, many more parents will find themselves on this side of the spectrum as well.

Imma last fall, after we found out she was not autistic

One year when I was teaching kindergarten, I had an amazing five year old in my class.  I was told he had autism and I was given several strategies to use to help him learn.  This child was extremely intelligent and had many gifts.  For example, one day he walked in to my class, picked up a book and started reading it.  Just out of the blue, overnight, he had suddenly synthesized all of the information I had taught him thus far and started reading. Amazing.  He had aversions to loud noises, repetitive speech, language processing difficulties, and a strong need for a routine. At the end of the year, I was told he was being dismissed from special education because he wasn't autistic after all.  I was shocked.  He had so many characteristics that we usually associate with people on the autism spectrum. I'm not sure exactly what they determined was an appropriate diagnosis for my little friend but this was the first time I was faced with a misdiagnosis of autism. Thankfully for my family, it wasn't the last time.  When I was told that Imma's evaluation showed she was not on the spectrum, I remembered this other child and I wondered if the feelings of relief I was experiencing had been the same for his mother.
The most important statement I could make to the parents of a special needs child is, "Don't ever give up hope."  Keep hoping for breakthroughs, advancements, cures, more research, more funding.  You just never know where hope can take you.  The surefire way to stop your child's progress is to give up.  The second we stop believing that our child will one day have a normal life is the day that dream dies. So never stop believing.
Imma is in the middle of another language explosion right now and it always makes me excited and reflective when this happens.  She continues to make tremendous progress and I am so thankful for all of the people who work so hard for her.  But most importantly, I am so happy that I was the one chosen to be her mother.  She is an amazing blessing and she continues to teach me something new every single day.  Today is a day to celebrate how far we've come and to look forward to a future where no one's label reads, "autistic."

Parent-Teacher Conferences Still Make Me Nervous!

It's been about a year since the whole ordeal with whether or not Imma was ready for kindergarten began and I still get a little queasy walking into a meeting with her teachers. I know that this is totally different--new school, new district, new philosophy for special education--but I can't help but have momentary flashbacks to the horrendous experience we had last year.
In our new school district there are conferences in the fall and the spring.  We just had Imma's spring conference.  There were no surprises.  Imma is struggling in areas where she has to understand abstract concepts or be able to perform a task based on information she should have attained from listening to a story or specific directions. She is struggling with putting letter sounds together or figuring out unfamiliar words from picture clues.  I'm not surprised at these things.Of course she is having difficulty when it comes to areas where she'd have to be able to process language.
She also has a few areas where her behavior has to be modified.  Again, that's not surprising.  She can be a bit mischievous.  In fact, her behavior at home is probably worse than it is at school.  At least she doesn't try to ride the other children the way she tries to ride the dog.  At this point, she isn't doing anything beyond typical kindergarten "can't keep her hands to herself" and while we are going to continue to work to extinguish this behavior, at least she isn't biting, kicking, punching anyone. No one used the "A" word and no one told me she "couldn't" or "she'll never."
The bottom line is, she's continuing to make progress and her current placement is working. She has an amazing classroom teacher and resource teacher and a phenomenal speech teachers as well.  I've worked with hundreds of teachers in the last 12 years and I can honestly say her kindergarten teacher is one of the very best teachers I've ever had the pleasure of working with. I have been blessed to have the opportunity to work with some amazing kindergarten teachers, having been one myself for several years, and I would put her teacher on the short-list of fabulous teachers. Her resource is a former pre-k teacher so she knows exactly what Imma needs to work on and she does an outstanding job with her as well.  Imma loves both of them very much and she works for them because she has such a good relationship with them.  She also has the benefit of working with speech teachers who are practically miracle-workers.  Imma's speech has come so far this year because of the hard work of these two amazing women, it boggles my mind to think about all of the things Imma says now that she couldn't say a year ago.
Though we still aren't at the kind of conferences I had envisioned for my children--you know, the perfect kind where the teacher just can't stop saying that your child is brilliant and far above grade-level, etc.--we are far from where I think we would have been if we hadn't made the decision to take our Immy and run.  It's hard to believe kindergarten will be over soon but I'm looking forward to next year.  (We have a lot of fabulous first grade teachers, too!)  Before you know it, I'll be at a kindergarten conference for this one:

Is Lu ready for kindergarten?  Is kindergarten ready for Lu??

and that will be a different kind of conference all together! Better get ready, kindergarten, you only have 2 1/2 years to prepare and time's a ticking!

Perhaps We're Approaching Normal Enough

The last two years Imma has participated in the Special Olympics.  This year, she isn't eligible to participate. I absolutely love the Special Olympics.  I think it's a wonderful way for athletes to show what they are capable and that they are not limited or defined by their disabilities. I would, however, be lying if I said that it never bothered me to see my daughter in her Special Olympics t-shirt.  I wasn't embarrassed or anything like that, I was just sad.  It just seemed like another way my child was being labeled as different.  So, even though I love that we have a Special Olympics and I think it's amazing to see athletes come together and compete and cheer each other on, I'm not sad that my child wasn't eligible. And honestly, if we allowed children who are identified for special education only because of a speech disability to compete in the Special Olympics, doesn't that take away from many of the other athletes who have more limiting disabilities?  If you disagree, I'd love to hear your polite explanation as to why, but, in my opinion, students with speech disabilities are generally capable of participating in regular sporting events and shouldn't be allowed to participate in the Special Olympics and it's kind of sad for the other children that my daughter was allowed to participate for two years with a qualification of speech-only.  Of course, if you've read my story then you know that we had some made-up labels that also allowed her to compete, but you will have to go back in my blog history to read all about that!
Imma is actually going to play t-ball this year and she's been practicing.  She can hit the ball pretty well.  She doesn't bend her knees, she often puts the wrong hand on top of the bat, and she doesn't swing as hard as she probably needs to, but she can actually connect the bat to the ball and that's better than I can do most of the time. I'm pretty sure she'll forget where to run once she's in an actual game--or she'll skip to first base  like I used to--but she's going to be playing with other typically-developing children and I'm eager to see how she does.  I hope she has a coach with a lot of patients and a team that doesn't put a lot of pressure on her to do well!  She'll make mistakes like we all do but I think she'll have fun.  And I think she'll learn a lot.  I was once told she was not capable of observing other children and mimicking their actions so that she knows what she's supposed to do.  That is completely untrue and I think that her friends will help her understand what to do and that she will learn a lot from watching them.
I am excited for her to have the opportunity to be a part of a team and hopefully continue to grow some friendships. My dad always said that playing sports wasn't about competing in a game, it was about figuring out life--how to work together, how to be a leader, how to be a cheerleader, how to win and how to lose gracefully.  I want Imma to know all of those things. It warms my heart to see how well some of her classmates look out for her and help with everything from eating lunch to following directions. I want to see how that carries over to other areas of life.  And she's a good athlete, too! She's fast, strong, and a super climber, which doesn't help with t-ball but it does help with sports in general.
Spring will be here shortly and I can't help but think back to where we were a year ago. Imma was in the process of being kicked out of daycare. I was getting notes about her behavior from her teachers almost daily. I was at my wits end trying to figure out what to do with her.  We were driving for hours twice a week to get to speech and O/T and, while she was making progress, it was hard to see through all of the clutter.  Now, here we are a year later and, while we still have our struggles, she's come so far.  There are times when people are talking to her that I catch myself almost explaining to them that she's not able to understand them and I stop myself.  Let them figure it out for themselves--or not. Maybe they won't know.  Maybe she'll be "normal" enough. And that's all I really want for her at the end of the day--normal enough,  not the same as everyone else, but normal enough to get by. She may have lost a little bit of her "special"ness this year, but in a good way, in my opinion. There's a balance between special and normal and I guess that's what we are trying to find.

This is How We Roll

Imma wanted to go for a bike ride this evening. Problem is, she was already in her pajamas. She changed into her favorite mismatched PJ's as soon as she walks in the door. But, since we only have one other family in our neighborhood and I was pretty sure they weren't home, this is how she was dressed when we left the house. She got off her bike in a cul de sac and she and Lucy ran around for a bit. Such silly girls. So happy the weather is getting nicer and we can spend more time outside!

My Co-Pilot is Jesus, But My Navi, Well, That's Imma

Just a quick post today as, believe it or not, maintaining three blogs and trying to post something new and exciting on each of them everyday is, well, a little exhausting--especially when you have strep--so I'll try to keep this one brief. And don't worry, I will not send my Kooties through cyberspace to get you. If you happen to get strep after reading this blog post, it's purely coincidental.
I took Imma to Wal-Mart with me to do the grocery shopping today. She is in rare form today and we had a really good time.  She was sitting in the cart, which she can barely squeeze in to but we made it work, and she was making all kinds of goofy conversation. Lately, she's been mimicking that awful Fruit Roll-Ups commercial where the little boy says, "PLEEEEEAAAASSEEE!" for like 20 minutes--ya I'm never buying Fruit Roll Ups again, ever, even if the Zombie Apocalypse hits and we find out they are afraid of tape made of fruit--so I got to hear that word a lot more than I am used to.  But mostly she just talked about things that she saw and who we should get stuff for.  She said stuff like:
 "Grab it and go!"
 "Uhm, ya, it's a good one!"
"One for Barkley and One for Duke!"
"I like chocolate fruit!"
"Can we have chocolate cereal?  No that one, with the Rabbit! Yes, Trix!"  Uhm, that's not chocolate, "Pleeeease!" Okay, okay, whatever you want!
My favorite part was when she started "reading" the grocery list.  In her defense, even if she was a reader, she might not have been able to decipher my husband's chicken scratch.  She was sitting there telling me what we needed next. "Okay, Mommy, we need some birds, and a circus, and some cereal, and strawberries."  And wouldn't you know it if they weren't all out of birds and circus!  That's always my luck!
She was being so cute I tried to bribe her into letting me take her pictures. It was a no-go until she saw the M&M's. One extra-large bag of peanut deliciousness later and she's a little wired.  But I have my picture for the blog, so it's all good.
As she was sitting there talking to the very sweet cashier, I was thinking, "I bet if I told this woman that my child was autistic not so very long ago, she would be shocked." There was nothing autistic about my girl today.  She wasn't like everyone else but that's okay.  She was cute, she was making sense, she was being funny (they told me she would never understand humor) she was sweet.  We had a very nice trip to a place that's not exactly my favorite and now she's sitting next to me ruining every high score I ever had on Angry Birds on my iPad.  I'm very lucky to be her mommy!

Oh, what will you do for an extra-large bag of M & M's, Imm?

I'm So Happy to Be Home! And The Girls Went Swimming

Yes--two titles because I'm just that happy to be home!
My girls were just as happy to see me when I got home yesterday as I was to see them. Lots of hugs and kisses!  And lots of excited chatter.  Daddy wasn't feeling well so he did not do as much excited chattering but we were still happy to see each other!
The girls went to a swim birthday party today and had a lot of fun.  Here is our day, in pictures.

Imma and Lucy in the pool

Lucy, just chillin'

Imma with two of her friends from school

My favorite part of the day--Imma got on this fish and two of her friends from school swam over and got on, too.  These two kiddos are two of Imma's best friends and greatest helpers.  I am so thankful she has friends like these two (and a couple of others that weren't there.)  They are angels in little people's bodies!

Demanding cake!

All tuckered out!

My 100th Blog Post: A Tribute to My Original Inspiration

This marks my 100th blog post on my original blog, Images of Imma-Jane. (The "and Lucy!" part was added about 3 years after I initially began the blog.)  Today, I would like to reflect a little bit about where we were, where we are, and where we are going.
On June 13, 2006, I woke up feeling very sick to my stomach and exhausted.  We'd been trying to start a family for a few months and I was hoping this was a sign that this family had begun! I had a master's class that morning and, though I didn't want to attend, I dragged myself in anyway.  I was feeling better later and I was hoping that was also a good sign. That afternoon, I decided to start recording my ideas in a journal for the baby I was hoping to have someday soon.
It turns out I wasn't pregnant on June 13, 2006.  However, it wasn't too long before I learned I was pregnant.  And, on June 13, 2007, one year to the date of when I started that journal, Imma-Jane Isabella was born.  Imma came into this world with many serendipitous occurrences and those types of things still tend to surround her.
We were thrilled with our tiny bundle of joy.  I've always said Imma was Imma before she was even born.  She is her own person--unique, self-motivated, different, fearless.  She has proven time and again that, if you have enough tenacity, nothing is going to keep you down.  She has over-come great obstacles to get where she is today and she does it all in a way that prevents most people from even realizing she is "different."
Imma was 18 months old before we started to realize something wasn't quite right.  She wasn't talking like she should be, she wasn't focusing well, she was too courageous, she didn't seem to notice other people the way she "should."  Through several evaluations and lots of therapy, we ended up in a Pre-school Program for Children with Disabilities and a sentence to kindergarten by their rules--a structured teach classroom, an autism unit.  No official label, just "autistic tendencies" and a school staff convinced my child could not survive in a general education classroom.
Despite the recommendation of these "experts," we did not place Imma in an autism unit. Instead, we moved her to a school that puts much faith in the believe that children must be given a chance to fail or succeed before they are labeled or defined.  And Imma has flourished this year!  Not a week has gone by that someone--a teacher, an administrator, a friend, a family-member, doesn't tell me how proud they are of what she has accomplished.  Despite her inability to completely process spoken language, Imma is being successful in a general education kindergarten class with minimal support.  We still have our struggles and there are times when I wonder if she will ever be the same as everyone else, but she has by far surpassed my expectations, those of her current teachers, and certainly the minimal expectations those "experts" set for her at her previous campus.  If there is one thing you should know about Imma, it's that she is never going to give up.  She'll keep working and fighting until she gets it.  I could not be more proud of my little girl than I am today.
What does the future hold for us?  A lot more struggles, a lot more trials and tribulations, and a lot more successes.  There will be more difficult curriculum, more skills she will need to acquire, more hills to climb.  But each one of these is truly an opportunity for her to show her tenacity and to overcome.  I know nothing is going to crush her spirit and nothing is going to keep her down. If each of us had just a bit of the will-power that child has, imagine what we could accomplish.

Imma at 2 1/2

Imma at 5

100 posts in 5 and 1/2 years, but many more to come. I hope you will stay with us on this journey.  We are far from the end and we have many more lessons to learn, and share.  Please continue to walk along beside us on our journey to "normalcy," and thank you so much for walking with us thus far.

Time to Hit the Books!

I've decided to take the bull by the horns, hunker down, bite the bullet, and move full speed ahead!  I'm going to teach Imma to read--if it kills me! And after two days of fairly intense tutoring, uhm, well, I'm not dead but I am a little exhausted.  I think she probably is, too.  But I feel like she should be reading by now.  She's had the same skill level for a while and she has all of the basics she needs to be able to do it.  I just have to find a way to make her understand what she's supposed to do!
So, yesterday I got out a book that was a little bit too hard for her.  There were a lot of words that she already knew and several that she didn't.  Whenever she got to a word that she didn't know, I did the same thing I do with all of my students. I asked her to look at the first letter and get her mouth ready for that sound.  Her response--laugh hysterically in a goofy voice.  Okay--different approach!  What letter is this?  She barks like a dog and snarls out me.  Imma?  Imma!  IMMA! Finally, after about 10 times of asking, "what sound does this letter make?  This one. No this one right here.  Imma?  Imma! You know this letter, you know this letter!" she would finally give me the information I was asking for.  And it isn't because she doesn't know her letters or letter sounds.  I don't know if it is because she just didn't know what I wanted, she was just burned out and being silly, or if she is just a toot, but she should have been able to answer my questions very quickly and she wouldn't. After about twenty minutes, we finally got through the book with no blood and only a few tears.
I asked one of her teachers this morning if she responded to her this way and she said no (thank God!) She said she laughs sometimes but she's never barked at her or done some of the other annoying things she was doing for me.  I don't know if they are asking her to do the same things that I am doing either.  All teachers have their own methods of teaching reading so they may not be teaching her the same way that I am attempting to.  I have had a lot of success with my approach and I'm going to keep trying with her because I'm hopeful that I'll find a way to reach her.  Today went much better but that might be because we worked on it before school when she wasn't as tired instead of after school. I also brought her to my reading table at school so I think she was taking it a little more seriously.
This isn't at all to imply that I don't think her teachers are doing an excellent job or that I feel like they aren't doing everything they can because I know they are.  I just have very high expectations for her and I really hated seeing her name sooooo far down on the list of kindergartners when I rank ordered their test scores. (I did that because it's my job, not because I am obsessed with her test scores, just FYI). So, I've  just decided to move into high gear and use all of the methods I use with all of my non-reading struggling students and see if any of those make her understand what she is supposed to do when she comes to a word that she doesn't know.  Right now, she's just learning words, one at a time, and while that would be fine, it will take a long time.  I'm hoping she'll figure out that, since she knows her letter sounds, she should be able to put those together and start decoding words.  As of right now, she isn't getting that and I'm trying to find a way to explain it to her so she does get it.
With that in mind, we will try again tomorrow!  Wish us luck!

Traveling Back In Time Via the Telephone

I received a phone call from a very good friend this afternoon while my daughters were opening their Christmas presents from Grandma.  I wanted to take it but I couldn't tear myself away from the giggles of glee coming from two little girls who had just received their version of a Red Rider BeeBee Gun in the form of Cuddleuppets. So I let it go to voicemail. When I finally got the opportunity to listen to the message, it was one of those sickening feelings moms of special needs kids get when they hear the oh so familiar story about a child very similar to their own whose parents don't know what to do. It's the kind of phone call I dread but also welcome with open arms.
My sweet friend used to teach in the same district as I did, same job, different school.  She left at the same time as I did as well, for similar reasons. In her message she explained that she has a friend in a similar situation as Imma was. No diagnosis but a big push for a specialized classroom with limited access to typically developing students.  She described the frustration, anguish, and exhausted state that I felt myself in so often when she talked about how the mom who feels lost, confused, and alone. She said she just couldn't understand how they could put her child in a classroom like the one they were pushing for without a diagnosis.  The mom just doesn't know what to do and they were hoping I could help.
Of course, I would love to talk to her and let her know our story.  I don't know her, don't know if she has similar options to the ones I had--which ended up in essentially taking my toys and going home instead of staying and fighting--or if she is in a situation where she will have to go the distance.  But I will do whatever I can to help this family because I know first hand that placing a child in a highly restrictive environment often creates restrictions on their ability to grow and develop while allowing them to participate in a general education classroom can create the opportunity for enormous amounts of growth.
I hope I have the opportunity to speak with this mom soon. I want to reassure her that she has the strength to fight for her child, if that's what she intends to do.  So often we feel hopeless and helpless in situations where institutions tell us what we are going to do with our children.  We should never feel that way. She may have to face the demons I was able to avoid but I will gladly stand with her and fight as long as we have to, if that's what's best for this sweet baby.  I certainly don't have all of the answers but I have learned so much more from walking through the fire myself than I ever dreamed I would before I took those first steps.
A wonderful friend of mine told me when I was beginning this battle, "Amy, you and Brian are the only advocates Imma has and it is up to you to always do whatever you must to stand up for her.  You are her mother and advocate first and everything else must always be second." That is so true. If we don't advocate for our children, who will? The decisions we make today could very well impact them for the rest of their lives so we must be decisive and sure-footed, no matter how jagged and foreign the road we traverse.
Hopefully, I will at least be able to inspire this mom to keep doing whatever she needs to do for her child.  At the very least, she will know that she is not walking alone.  There are so many of us who have walked the road before her and we will walk it again, with her, for as long as she needs us to.

The Lizard of Poz or Reading Without Words

Tonight, Imma decided she wanted to read Lucy a bedtime story. Lucy was delighted and promptly climbed into Imma's bed, waved at me and said, "Night night, Mommy," as if I was going to let her sleep in her sister's bed! (I don't think we're quite ready for that!)  Imma picked up her favorite storybook and proclaimed, "Lucy, let me read you this story.  It's, The Lizard of Poz." She then preceded to tell Lucy the story of the Wizard of Oz, to the best of her ability, while flipping through the pages, using the pictures as her guide. Lucy was enthralled, hanging on her every word!  There's just one problem, Imma doesn't have that many words.
In fact, much of what Imma was saying wasn't really words.  It was intonation. It was speech-sounds.  It was phonemes, phonics, some syllables. Lots of rhythm and variance.  Very few words.  The only words I really understood were, "Dorothy," "Toto," "she said," and occasionally she would throw in something else that was recognizable to me.  The rest of it sounded kind of like a muffled conversation you might hear through the wall of a hotel room.  You can tell it's speech.  You can tell it's English.  But, you really have no idea what the person is saying.

Imma reading to Lucy

Lucy was ready for a sleep-over!

This is how Imma hears a lot of the conversation going on around her so it only makes sense that this is how she would tell a story.  She knows there are supposed to be lots of words. She knows her voice is supposed to go up and down and she's supposed to have different emotions.  But she really doesn't know what she's supposed to say.  So, she does the best she can and fills in the gaps with speech-sounds.
If one is simply reading a bedtime story to a two-year old sister, this is perfectly acceptable, wonderful and good.  When one is in kindergarten taking a state mandated assessment, however, that makes it a little more problematic.  Imma had her reading assessment today and she didn't do so well. She struggles with segmenting and blending words because she doesn't process sounds the same way most people do.  She struggles with comprehension and how to respond to verbal prompts because she doesn't understand what she is supposed to do.  When she listens to a story, there are more words that she doesn't understand than she does understand.  So, she has to try to infer meaning and fill in gaps in the story based on very little information.  The result?  Her teacher read her a story about some kids building a tree house. Imma thought the story was about kids climbing a tree to get apples.  There was no mention in the story about apples but she just assumed that, if there was a tree, there would be apples.  Needless to say, she didn't do so well on the test and that is unfortunate because it isn't through lack of intelligence or lack of effort.
It also isn't because of a lack of reading skills.  Imma has a lot of great pre-reading skills. She knows all of her letter names and sounds.  She  knows a lot of sight words.  She knows practically every animal name you can put in front of her. She can decode to a point but she doesn't always know how to put the words back together.  She does get frustrated easily when she's reading because she isn't sure what she's supposed to do and she doesn't take direction well in that type of situation.  She also doesn't always know the names of the objects in the pictures so that can't help her and she doesn't acquire new words easily so even if you tell her, "That's not a hat, it's a cap," she's probably not going to understand what you are telling her.
She also literally does not hear some sounds the same way we do and it's not because of a problem with her ears.  Some sounds she just doesn't process correctly.  She thinks she's saying the same thing you are. Take the word, "Wizard," for example.  She says, "Lizard."  And she thinks she is saying it the same way I am. I'll say, "It's Wizard, with a 'w', /w/."  And she'll say, "Lizard.  Yes, Mommy. Lizard."  She knows what a lizard is and she knows what a wizard is. And in other situations, I've heard her use the word wizard correctly.  But she just doesn't get that she isn't saying Wizard of Poz.  (Poz I think is coming from a blending of the last phoneme in of and the beginning sound in Oz. I mean, we are usually saying The Wizard of Foz, if you think about it.)
So, what's a mommy to do?  And, especially, what's a Reading Specialist Mommy who spends at least seven hours a day teaching other children how to read, to do? It's really difficult for me to teach Imma and most teacher will tell you, teaching your own child is always challenging.  It makes it even more frustrating and depressing when I know she's doing everything she can and she just cannot overcome this obstacle right now.
And I do think it is just for right now.  I know she'll learn to read. And I really hope it is before the big mandated state testing begins in third grade where it could potentially affect the rest of her life.  We have amazing teachers at my school who will do everything they can to help her but this is going to be a huge challenge for this little girl.
If you have been through a similar situation, I would love to hear about it!  What challenges have you and your child had to work through?

How Does "The Mean Girl" Make Friends?

Making friends is something we have always struggled with--well at least the last three or four years. Imma doesn't relate to other children well.  She used to try to play with the other kids but when they didn't know what she wanted or what she was trying to say, she would wander away, or they would go off and leave her.  She almost always ended up playing by herself.  This year, kindergarten hasn't been too different.  There are a few kids in her class, mostly very sweet little girls, who try to "help" her.  Sometimes they treat her like she is a baby or a little sister.  One even tried to pick her up one day.  They will even ask me how old she is.  They don't get that she is the same age they are, she just can't speak as well as they can. I tried to explain that she just doesn't understand what they are saying all of the time. One of them asked if they should say it in Spanish.  I laughed because sometimes the thought goes through my head, too.  Maybe if I just say it in another language, she'll get it!  But, no, saying it in Spanish, or French, or Chinese won't make any difference. We just have to keep saying it, slowly, with gestures, and she'll figure it out.
But five year olds are impatient and they don't always want to do that.  A lot of time she ends up swinging at recess or playing on her own.  And she's perfectly fine with that, for now.  But I am hopeful that she will eventually make some good friends and have lots of children to play with.
One day I over-heard another kindergartner, not in Imma's class, talking to a little girl next to her in the gym before school.  She said, "Oh, see that backpack over there?"  She pointed at Imma's backpack, which I had sat down while she was in the cafeteria eating breakfast.  The other little girl said, "Yay. Whose is it?"  The first little girl says, "That's the Mean Girl's backpack."  The other little girl nodded and said, "Oh, ya, the Mean Girl."  Of course, I had to enter the conversation at this point, so I said, "Whose backpack is it?
 "Oh, it's the Mean Girl's."
"Why do you call her the Mean Girl?"
" Cause she's mean to everybody."
"What did she doe that was mean?"
"I don't know.  She's just mean."
Well, I spent a few minutes explaining how it isn't fair or nice to call someone names if you don't know why you are calling them that and both of them seemed to understand what I was saying but a few days later I heard a similar conversation, this time two boys, talking about how Imma was the "Mean Girl." It just breaks my heart to know that these children are assuming because she doesn't talk to them that she's mean.  And I know from time to time Imma has done some mean things. Most kids do at the age of five.  But she's certainly not mean and she would be a great friend, if other kids would give her the chance.

My Sweet Non-Mean Girl!

We have play dates sometimes and those usually go well because I always invite family friends that she has known for a long time.  I don't know the parents of any of the children in her class well enough to set that up yet, but I think that would help. Does anyone else have suggestions of things we can do to help facilitate making friends? My girl is a very sweet girl and she deserves to know the joys of friendship just like everyone else.

All the Leaves Are Brown and the Sky is Gray

It is not a lovely day in North Texas today. It is dreary and bleak and miserable looking outside.  After some beautiful weather the last two days, it's disappointing to look out the window and see such yucky weather.
Yesterday, Imma, Lucy, and I went for a walk. I pushed Lu in the stroller and Imma rode Picky (it's Picky, not Pinky.  We just didn't understand what she was saying before.)  Imma talks to her bike like it's her best-friend.  "Come on, Picky, this way!  You can do it! Let's go toward the big house!" It's very cute.  We live in a pretty hilly subdivision and there were a few times I wasn't sure if she was going to make it up the hill but she did it.
Today, we definitely won't be going for a walk or a bike ride.  It's just too wet outside.  Sometimes on days like today we take the girls to Chick-fil-a (a.k.a. Chicken Hamburger) so they can play inside. Or we take them to Bass Pro to see the fish.  They really like looking at all of the enormous fish in the indoor fish tanks.  We don't usually stay home all day.  My girls are very active and they like to run around! I'm not sure what we are going to do today but I've got to figure something out because I don't like being cooped up either!
What does your family like to do on a rainy, dismal day? I'd love some new ideas!

Lucy, just chillin'

Disney World Tip--If Your Child Has Special Needs You Need to Know This!

Our family traveled to Disney World during Thanksgiving break.  When we arrived on the Saturday before Thanksgiving, the parks were not that crowded but by the end of the trip a lot of the rides had waits in excess of two hours.  With Imma's sensory processing problems, it would be absolutely impossible for her to stand in a line that long without having multiple meltdowns.  In fact, I don't think she could stand in a line for half-an-hour without getting really upset, bothering the other children, or just running away. Luckily, the wonderful people at Disney understand that not all disabilities are visible.  They have a system in place for preventing meltdowns and allowing all children to have a magical experience in their parks.  It's called the Guest Assistance Card and if you have a special need's child, you need to know how to get one.
Acquiring a Guest Assistance Card is actually very simple, so long as it is needed.  You simple go to the Guest Relations Counter in any of the Walt Disney World Resort theme parks, accompanied by the child that needs the Guest Assistance Card (GAC), and explain why you need the card.  We had absolutely no problem getting the card whatsoever.  It took less than 10 minutes and the cast members were extremely nice.  We also asked for a card for Imma's stroller so that we could use it as a wheelchair.  This meant that Imma never had to get out of her stroller except for getting on and off of the ride.  We pushed her right up to the ride's loading area and she got right on.  This was important for us because Imma has a tendency to wander away when she is in wide open spaces.  She also runs off and blends into crowds quickly.  She doesn't always look where she's going and darts into traffic.  With the GAC, we didn't have to worry about any of these things. She felt more comfortable in the crowds because she was in her own seat.  She was able to rest if she needed to and she was less likely to bother others because they were not as accessible. These were all very beneficial.
Of course, the best part for us was that we didn't have to wait in extremely long lines with an anxious and irritable little girl.  The longest line we had to wait in was about 15 minutes long but sometimes we actually just walked onto the ride.  All you have to do to use the GAC is find a cast member near the attraction that you would like to ride and ask them which entrance to use.  It's usually the Speed Pass entrance or the wheel chair accessible entrance.  It can also be used for shows but not usually for character greeting. The card isn't intended to shorten the wait, just to put the child in an area where there is less stimulation. However, it usually does both.  Your child gets to wait in a less crowded area where the line moves a lot more quickly.
I have heard that some people get harassed by other people when they use the GAC, so be prepared, just in case this happens to you. We did not get harassed by anyone and, in fact, several other people were actually very helpful. Other parents were pointing out the entrance to us or they would take special note of our kiddos. We did get a few rolled eyes from cast members, of all people, but they were usually younger people who probably looked at my girl and thought she "looked" fine.  I was very prepared with a response, however, should anyone have had the nerve to say anything to us.  My response would have been something along the lines of, "I'll gladly stand in that line for two hours if you'd rather be the one with a disabled child!" Did I feel a little guilty sometimes by-passing all of the other people standing in line?  Of course!  But our children go through so many things that other children don't have to.  While most of those kids are playing baseball or going to dance class, mine is at therapy.  Other children get to enjoy a lot of things that my child misses out on so I see no reason why I should feel guilty that someone--Disney--recognizes that sometimes there needs to be a few points in her favor. Without the GAC, our vacation probably would have been horrendous.  But because of the GAC, we have some wonderful memories, with very little intermittent meltdowns.
If you have any questions about the GAC, or anything else you read about on this blog, please leave a comment or email me at amyevanhorn@gmail.com

Imma loved the Dumbo ride. We rode it over and over.

We all loved Prince Charming's Carousel.  We didn't need the GAC for this ride because the line was always short.