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. . . ."

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.

Breaking Down--But Breaking Through

I've been thinking about my dad a lot the last few days.  I got a message from my little sister late last night that caused enough emotion to bring back the "ugly cry" for a half-hour or so.  This post isn't about my dad but I mention him because, like so many things in life, I have once again found myself in a situation when I would really like to talk to him about what's going on with Imma right now.  But I can't. And that always makes me very sad.
My dad was in a band my entire life.  When I was very little, he was in a rock band named Crossfire.  He was going to make it big.  He should have.  My dad was extremely talented.  They made a record and went on tour briefly before realizing he couldn't be away from his family so long. However, one of the songs that he recorded sticks in my head pretty consistently.  It was called "Can't Change My Heart" and I don't know if it was a cover or if the band wrote it but tonight when I was working with Imma, one of the verses kept playing over and over in my mind.  "You can build me up, just to tear me down, but you can't change my heart, can't change my heart."  I wasn't sure why the situation reminded me of those words, whether I felt like I was tearing her down or building her up but I had the distinct feeling that something, something important was happening in her head and I just had to weather this storm to get to the rainbow on the other side.
I've been pushing her a lot lately.  I feel like she isn't living up to her potential. She isn't reading like she could be, she isn't writing at all, she's behind in math.  I know she acts differently for me than she does for her teachers but I also know, as a teacher, what it's like to work with a child when you're not sure what they are capable of.  If you meet resistance, you're more likely to stop or let up.  With Imma, the resistance is consistent and relentless.  Every time I push, I get ridiculous laughter, animal noises, howling, unintelligible jibber-jabber, or physical movement away from where we are working.  I can completely understand how a teacher could meet anyone of these responses with the idea that she is not capable of doing what they are asking her to do so leave her alone and try again later.
Except, she was fully capable of doing what I asked her to do and then some.  And I know that.  So I pushed back.  I asked her what letter makes the /p/ sound.  She howled at me. I asked again.  She laughed hysterically. After about five minutes of going around and around, it took me  asking her if it was "w" to finally get her to say, "No, Mommy, it's 'p'!" Every single time I asked her a question, we would go back and forth until I finally got her to answer me.  But she was fighting just as hard as I was.  I know that she's not writing much at all in school, but I got her to write, "Clifford plyas in the sno."  She copied the word Clifford, she knows the word "the," and the rest of it she wrote phonetically.  She can do it.  She CAN do it.  But I can't figure out if she just doesn't want to, if she doesn't know what I'm asking her to do, or if she just can't get her mind and her hand to cooperate long enough to get the work down on the paper. I hope this doesn't come across as ugly or unloving but it is slightly disturbing to watch your child contort her face and laugh in an almost crazy sounding cackle when you ask her what sound a letter makes. I have got to figure out a way to make her understand what she is supposed to do and find another way to respond when she is asked to complete a task because I am honestly worried about how other people may interpret this response. If I find it odd and she's my child, whom I love and understand better than anyone else in the world does, how do her teacher and classmates perceive this response?
At one point when I was growing extremely frustrated, I took her little face in my hands, and asked her to look at me.  At first, she wouldn't do it. She looked down, she looked across the room, she looked anywhere but at my face.  I finally got her eyes to lock on mine for just a brief moment, and in that moment, I think I may have seen past the disorder and actually glimpsed the Imma I am trying so desperately to unlock.  It was only for an instant but her expression changed, and I thought, "There it is! There is the 'normal' we've been searching for!" And just as quickly as it appeared, it vanished. She scrunched up her face again, wrinkled her nose and said something I didn't understand. I don't know exactly how to explain what happened in that moment, it's not as if Imma never seems normal or always acts like there is something "wrong" with her, but this is the first time that I actually felt like we were closer to getting where we want to be than I had realized.  Like a lot of parents with differently-abled children, I have dreamed of a day when I wake up to the child I thought I was going to have. With some brief remark about having a strange dream or feeling different, she would just go on about her life like a normal five year old. Of course I don't ever expect that to really happen.  All of our steps are baby-steps.  But looking into her eyes for just those few seconds made me think that maybe someday she will be able to tell me what was going on in her head for all of these years when she just wasn't able to tell me what she was thinking.
After this little experience with the homework, the rest of the night was shot. It was a battle getting her to do--or not do anything.  She usually goes to bed at 8:00 but tonight Daddy put her to bed at 7:30 because she just could not leave her dog alone. You would think being bitten this morning before school (nipped on the hand, no blood or teeth marks) would have been enough to show her that she shouldn't pull on his legs or pick him up by his ears.  But she just doesn't get that yet so after being told several times that she was going to bed if she didn't leave him alone, she ended up earning her consequence and off to bed she went.
She did not go willingly or easily. In fact, getting her into her bed was much like boating a marlin and getting her to stay was trickier than keeping Houdini in a box.  She was kicking the wall, throwing things at the door, screaming at the top of her lungs. Brian went in two or three times and tried to explain to her that she had made bad choices and this was her consequence. I finally went in myself, put her in the bed and held her for a few minutes, smoothing her hair and talking to her about why she had to go to bed.  She kept repeating a line from a movie, "Please, I'll do anything.  I'll die.  Please let me out of here."  My response was to repeat that she needed to go to sleep, it was bedtime, we had to go see her teacher in the morning and eat cereal. She started speaking gibberish.  I knew she was trying to tell me something but she literally could not form the words.  What she was saying sounded like a foreign language. It was the same intonation as English, same phrasing and phonetic sounds.  It was not English, nor was it any other language.  But it was a message.  I kept saying, "Use your words, Immy.  I don't know what you're trying to tell me."  She grew more and more frustrated.  She started licking he fingers and putting them in her dimples, and smiling really big, like she was Spongebob or someone on a cartoon.  Then, she'd do it to me.  More unintelligible words. I encouraged her to keep trying.  I said, "Do you understand that you can't touch the dog like that?" Finally, she said, "Mommy, doggy's not hot.  He's cold." She thought we were telling her not to touch the dog because he would burn her, like we tell her not to touch the oven! I said, "No, honey, you'll hurt him and he'll bite you." "No he isn't.  He's not bite you."  "He bit you this morning."  "No, he's not bite you. It's okay. He's a good dog." At least I was able to understand what she was saying, even if she wasn't understanding what I was trying to tell her.  I finally got her to let me sing her a lullaby--something she hasn't let me do since she was about six months old--and she rolled over to go to sleep.
Maybe it's wishful thinking, but I just feel like this was an important evening, that we are in a treacherous and steep part of the journey but the road ahead will be smooth and downhill.  It seems like Imma always struggles and rebels when she begins to develop new communication skills. I just kept reminding myself that we have come so far.  She has made amazing progress.  I think she finally knows how to learn. Most of the skills she has learned over the last five and a half years have had to have been taught to her individually--word by word, phrase by phrase.  It seems to me like she may be figuring out how to pick up language the way the rest of us do.  When her brain gets overloaded with this information, the silly sounds and laughter takes over because she doesn't know how to process it. Does that make sense?
If anyone has any experience with this type of a situation, I would really love it if you would message me or leave a comment.  Without a diagnosis, without a cause or a proven therapy regiment, it is so difficult to know if we are moving in the right direction, if pushing her is really helping or if I shouldn't be pushing so hard.  It's all trial and error, learning as we go, hoping we make the right choices, and learning from our mistakes.  If anyone has been down this path before, please let me know where the pitfalls and dead ends are!

My beautiful Imma

The last time I actually spoke to my dad on the phone (not email) we talked about our decision to move Imma to a different school and take her out of the autism unit.  He assured me that we had made the right decision and that Imma would be better off for it. I would really like to hear him reassure me that we are on the right path now and that Imma is going to be able to learn all of the skills she needs in order to be ready for first grade. I have no doubt that we made the right decision about her placement, but I do need to figure out how to make this year as successful as possible. Sometimes, you just need your daddy to tell you it's going to be okay!

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.

Imma Dog Needs Obedience Training

Imma dog rolling around with Dukc

Imma dog barking at mommy

Imma has been pretending to be a dog for about two months now. I'm not sure what has inspired her to become a canine but it's starting to get out of control--very out of control. She insists on barking, chewing on things, rolling around with the dogs, and whimpering from the time she walks in the door until she goes to bed. When she is Imma dog, she doesn't listen, she doesn't follow directions, and she's mean to the dogs and her sister.  And today, she started acting up in school.  Her teacher said she was not following directions and started screaming and crying twice because she didn't want to do her work.  I am honestly getting concerned because this was about the time last year when her behavior got really out of control.  On my blog I try to provide information to other parents who need help with their special needs children. Well, now I'm asking for help.  Does anyone have any suggestions? What do you do when your special needs child doesn't follow directions, is argumentative, or refuses to stop pretending--like Imma dog!  Otherwise, I may have to call Man's Best Friend!

To Freak Out or Not to Freak Out? Imma and Frosty the Snowman

This is our friend Frosty:

Our old pal, Frosty

Frosty has lived with Brian and I for about 8 years.  He sings, dances, and is a regular jolly guy.  I love Frosty and one of my favorite events of the Christmas season is hauling him out of the closet, pulling his head out from under his body, attaching his head to his neck, pushing down on the spring, and watching him bounce up and come to life! There's nothing like a little Frankenstein Syndrome to get one ready for Christmas.  There's just one problem. . . . Imma is terrified, TERRIFIED, of Frosty this year.  She has had a love/hate relationship with Frosty for the last 5 years.  When she was little she would impishly totter over and touch him, running away as quickly as her little chubby baby legs would carry her.  She would eventually warm up and then start dancing as he sang such greats as, "Jingle Bells" and "I Wish You a Merry Christmas."  Last year it was a little more difficult.  She was really scared for a long time and I thought maybe we should put him away.  But eventually she got to where she not only wanted him out, she wanted him on ALL THE TIME.  That got a little annoying and I actually started to dislike Frosty a little bit.
This year, Frosty is upstairs, in our guest room closet, still in his box with his head under his body.  Why?  Imma is literally petrified of him this year. I got him out of the closet when I was getting my Christmas stuff out and she freaked out!  "NO!  No Frosty, Mommy!"  If anyone even walks past the room where he is kept, she starts yelling, "No!  Don't take him out!"  So, Frosty stayed in the closet this year and I've been so busy I've hardly missed him, though Imma reminds me of his existence everyone time I take a step in the direction of the guest room.
So imagine my surprise today when I walked into work and saw this:

The Frosty in the display case at school.  Photo by Imma

Uhm, ya, that's Frosty's twin, uhm, Frosty.  He was in the display case at our school!  Every 6 weeks a new team of teachers switches out the decorations in the over-sized display case near the office and this wonderful team of teachers had used a snowman theme. It's gorgeous and creative and I absolutely love it. Except I was sure Imma was going to FREAK OUT!! when she saw it.  I mean, really, what are the chances that two Frostys live in our little bitty town? Not very likely!  But, here he was, standing there in the window ready to scare the pants off of my little girl.
So, naturally I did what any over-protective mother would do. I panicked. I went to Imma's teacher, interrupted her class a little bit, and said, "There's an s-n-o-w-m-a-n in the display case and if Imma sees it she is going to start screaming!"  Imma's wonderful teacher (who could probably tell that Imma is not the only one on the verge of  freaking out calmly said, "Ok.  We don't go past there until Friday so she'll be okay until then."  But then I realized that Imma goes past there twice a day with her resource teacher and she also has to walk past there to get to speech!  So I ran off to find her other teachers and warn them of the inevitable screaming fit that was about to happen.
Luckily, her teachers are much more calmer than I am.  They assured me that they would try to distract Imma when they went past and would reassure her that it would be okay.  Now, keep in mind Imma literally covered her eyes and ears for an hour after Santa visited, so I'm not sure my own freak out attack was completely unwarranted.
Nevertheless, Imma did not freak out today at school--thank God!  Her resource teacher was able to walk her past without much of a conversation, though Imma did notice.  Then, on the way back to her class, Imma stopped and told her teacher about the snowman.  After school, I found Imma standing outside of the display case window, talking to Frosty and taking his picture with my phone. I walked over to her and said, "What are you doing?"  She said, "He's best friends! And he's got a storybook in he's hand. See?"  Her resource teacher happened to walk by and Imma told her the same thing.  She went back out to visit Frosty two more times before we went home and had to tell him good-bye. I was amazed that she didn't freak out!  But I think her teachers staying so calm really helped.
Unfortunately, ever since we walked in the door, Imma has been screaming and acting very upset.  She has told me several times, "Don't take it out, Mommy!" I'm not sure if she thinks that was our snowman at school or if she now realizes there isn't just one. She is currently sitting next to me repeating, "No, it's not okay!" and  I have no idea what she's talking about. Something tells me we're in for a long six weeks!

Closet Clean Out Always Makes Me Sad!

Cleaning out Lucy's closet always makes me sad because I see all of these cute little outfits that she wore, or Imma wore, or they both wore, and I know they will never wear them again.
It makes me happy to get rid of stuff, especially when I know someone else can use it. But it's really hard to see some of these outfits go.  Does anyone else have that problem?
Lucy will be 2 1/2 on Saturday and she is just now getting in to her 2T/24 month clothes so all of the 18 month clothes have to come out.  One of my dearest friends is having a little girl in the spring so she will be getting a couple of boxes of clothes!  The rest will go to Good Will.  As I'm pulling things out of the closet, I can remember places we went, photos we took, experiences we had while one of the girls was wearing these outfits and I can't help but reflect upon how quickly my little girls are growing up.  Most of my memories of Lucy are happy ones.  With Imma, it's a little different because some of these clothes are the ones she was wearing when we started to wonder if something was wrong.  That makes it harder to pass them along.  I usually end up keeping one or two outfits that I just can't let go, but this time, I put them all in a box to be mailed or a bag to be donated. I'll still have the memories and the photographs and hopefully the sadness will go out the door and fly far, far away.

And then there's another issue.  This is Lucy's closet.

It's a tad bit tight.

While, this is Imma's closet.

Hello?  Hello?  Echo, echo.

Someday Lu will realize that in closets, as in life, all is not fair.  In the meantime, we have bags of clothes in the back of Imma's closet, size 3T, 4T, and now starting a bag of 5T's that Lucy will eventually grow in to.  Sigh . . . . They just keep getting bigger!  The positive side of my brain says, "Praise God I've been blessed with two healthy girls who continue to grow and are here with me each year." The other part says, "Can't they just stay little girls forever?!" Time marches on and eventually we'll have to figure out how to solve the closet conundrum but for now I will keep shoving clothes into Lucy's closet and hoping I don't lose one of the dogs--or the children--in the cavernous closet in Imma's room.
What makes y'all reminisce about how fast your children are growing?

Imma's Christmas

Last night, Imma asked me if she could go back to school today.  She said she wanted to take her new lunch box to school.  Imma didn't get a new lunch box and she doesn't take her lunch.  She did get a new metal purse with Cinderella on it and she wants to take goldfish crackers to school for snack, in her new metal purse.  Imma is as unique and silly as can be, and this is one of the many reasons why I love her.
Imma loved the snow.  She was very sad when it began to melt.  "Snow all gone, Mommy. My snow is all gone!" She loved making a snowman with Daddy and sliding down the hill on a trashcan lid.  She loved catching the snowflakes on her  tongue and throwing snowballs at Daddy.
Imma got several art supplies for Christmas and has been painting and drawing a lot this week. She painted a beautiful rainbow and drew multiple pictures of the three little pigs, their houses, and their nemesis the Big Bad Wolf. She's been reading her TAG books, her v-tech books, and borrowing her sister's Mobigo so she can play "Jake" and watch Cubby almost fall off the cliff.
We've been playing a lot of "castles" with Lucy, too.  Lucy got two castles for Christmas and she thinks the blue one is Imma's even though it's not.  Imma doesn't really like to play castles but she will play with her sister for a few minutes before screaming, "Lucy Kate Annabella!"
Imma's also been playing a lot of Mario Cart Wii.  There's actually one person in this house that is worse at this game than me!  She crashes, she falls in the water, she gets stuck in a corner, and she laughs hysterically the whole time!
Duke and Imma have had a lot of fun this Christmas.  Well, Imma's had a lot of fun pretending to be a dog and playing with Duke. I'm not sure if he really likes it or not.  She barks, wags her tail, and licks everyone, including Duke.
Finally, Imma has enjoyed riding her new bike, Pinkey, around the living room.  Yes, around the living room. It's been too cold to go outside so she's been riding inside.  She's crashed a couple of times, ran over everyone, and tipped it over, but she just keeps right on riding.
I'm blessed to have this beautiful girl in my life!

Imma ready to go outside, before we'd even cleaned up the Christmas presents!

Mommy's Little Cheerleader!

I got a sewing machine for Christmas and I'm terrified of it.  But I decided to at least try cutting out a pattern today.  I decided to attempt to make Lucy a simple dress.
I opened the pattern envelope and started reading.  I determined which pattern pieces I thought I needed and then started cutting.
Imma came and sat down at the other end of the table.
"Watcha doin' Mommy?"
"I'm attempting to make a dress."
"Oh, ya! Watcha makin' Mommy, a dress?"
"Yes, baby."
"Yes, baby.  You can do it, Mommy!"
"Uhm, I don't know about that, Imma."
She then started singing the song that the birds and mice sing on Cinderella, "You can do it, you can do it, Cinderelly, Cinderelly.  You can do it, Mommy!"
As I am piecing the pattern to the fabric and starting to cut it out.
"You making a dress, Mommy?"
"Yes, baby."
"Yes, baby.  You can do it, Mommy."
"I'm gonna try, baby."
"You can do it, Mommy!  You can!" She started singing again.
Once I had the pieces cut, I decided I needed to do a little bit more research on how to use the sewing machine before I actually started sewing so I started cleaning up.
"Watcha doin, Mommy?"
"Cleaning up, baby."
"Cleaning up?  But Mommy, are you gonna make a dress?"
"Tomorrow, baby."
"No, Mommy.  You can, you can!"
"I know, baby, but not today.  Mommy finish it tomorrow."
"No, Mommy.  Mommy make a dress.  You can, you can!"
"Yes, baby.  Mommy finish tomorrow. . . ."
She started singing again.
It's nice to have a cheerleader!

What were you expecting to see in the box??

Mommy Needs a Break, Too!

Like all moms and dads, parents of special needs children are on call 24 hours a day.  Even if and when our children are actually slumbering peacefully, there is still much to be done.  Whether it's preparing specific foods, readying necessities other children may not require, or cleaning up excessive messes created during uncontrollable melt-downs, there is almost always something that needs to be done.  And when all of the physical preparation is finally over, there is always more research to do, more books to read, more websites to visit, more appointments to schedule.  Being a parent to any child is difficult but having a special needs child is often even more overwhelming than one can possibly articulate.
I remember sitting in a waiting room while Imma was in therapy last year, watching Lucy play with another little boy whose sister was also in speech, on the verge of an emotional breakdown. (I think the only thing that kept me from losing it was looking up and seeing another mother plucking her eyebrows.  How can one cry in the midst of such ridiculousness? But that's another story!) I took out my phone and, in between opening crackers,finding sippy cups and breaking up arguments about who had the toy car first, I posted a status on Facebook that not only spoke exactly what was in my heart but it rang a chord with some of the other mothers I know who have special needs children.  It doesn't happen often that I feel I have said exactly what I meant to say and, while I'm sure I could go back and find that post, I will will see if I can replicate the sentiment for you now.  While other parents are driving back and forth to soccer practice, rushing around to make sure that the ballet shoes are in the bag, that the PJ's are returned from the sleep-over, that their children get to all of the fun activities they have scheduled, we are sitting and waiting in doctor's offices or therapists waiting rooms. We are driving back and forth, too, but there is no sports bag, no dirty pair of cleats.  We worry about weighted vests and security blankets. Some of us can't leave the house without medical supplies. I can't tell you how many times I have heard a friend mention how hectic it is making sure her child gets to practice or to the game and wished so badly to have that specific problem. And I certainly don't mean to offend anyone by saying that because I love hearing about how my friend's children are doing in sports or other activities.  I just wish that Imma could do those things, too.  At the time, there was no way she could possibly have ever handled an organized sport--I tried gymnastics and we failed miserably--and I was exhausted from driving an hour each way twice a week, sitting in the waiting room for hours on end, and feeling extremely guilty that my baby was playing with another boy who insisted her name was Landon, instead of being at home or at an activity of her own.
It was about that time that I realized I needed a break. I had to have a break. For most of us, being a mommy means you are constantly thinking about or worrying about your children, special needs or not.  It has always been that way for me.  And we were in the middle of the "Push Towards Kindergarten" I have described in other posts.  Imma's behavior was a disaster and I didn't know how I was going to maintain my sanity for the rest of the school year.
So I decided to go on a trip.  Without my children.  And without my husband.  After all, he had to stay with the kids.  I took my sister and we went on a short trip to a nearby Bed and Breakfast.  It was only two night and it was difficult to leave my family, but it was needed, and quite frankly, earned. We had a wonderful time and when I came back, I was well-rested and ready to conquer another round of therapy and whatever else was to come.

Our Welcome! Plate (cookies devoured shortly there-after), my bedroom, and the view from our room at the enchanting inn we stayed at.  Message me for contact info--it was divine!

All parents need a break from time to time.  Parents with special needs children often feel like they can't afford to take a break. We believe no one else can take care of our children the way that we can.  We tell ourselves our children will be uncomfortable, upset, scared.  While it's possible that these statements may all be true, that doesn't mean they outweigh our need to have some time for ourselves. And if you can take your spouse with you, that's even better, though we've yet to do that since Imma was about two and we had no idea there was anything different about her.  Surely there is a grandparent, an aunt or uncle, or a close friend who can keep the kids for a night or two while you go somewhere nearby--but not too nearby--just long enough to catch your breath and remember why you love your kids so much in the first place! In fact, if you start reading about parenting special needs children one of the first things you'll find is that nearly every organization will recommend respite time for parents.  That's just a fancy way of saying, "Take a break!  You are a person, too!"
Now that Imma and I are at the same school, it's even more important for me to take a break from time to time.  My husband is very good at letting me have some "me" time, to make tutus or blog, that sort of thing, almost every day, which I appreciate and recommend.  My girls are getting older and Imma is getting more independent.  Lucy is still very needy, but right now she is a Daddy's Girl so that's helping mamma out in the R & R department.
We are looking into the possibility of starting Imma in t-ball this spring.  I work with a wonderful teacher who also coaches and she thinks we should give it a try. I think I might.  If she can't do it we can always take her out.  But I think she'll like it.  As long as the coach is patient and speaks "Imma" we'll be just fine.  Lucy is in dance and her caregiver diligently takes her to ballet, tap, and jazz class every week.  I'm so glad that she is getting to enjoy something other children get to do instead of sitting in waiting rooms all of the time. And if you dare to call her anything but her name, she will correct you very quickly and sharply.  "Wucy!  I Wucy!"
If you have an idea for a mini-vacation or some advice for parents leaving their special needs child for the first time, please message me or leave a comment. I'd love to hear from you!  Why should I do all of the talking, lol?
I promise more pics of my beautiful girls next time!

I Love Lucy! What it Means to be the "Normal" One

I think one of the reasons I named my second (and final!) daughter Lucy is because I hope, someday, to be able to drive her crazy by saying, in my best Cuban accent, "You got a lot of 'splainin' to do, Lucy." I have a lot of fond memories of watching the amazing Lucille Ball get herself into trouble at my grandma's house and I always wondered how in the world she could be so beautiful and so ridiculous at the same time.

Newborn Lucy, 2010

And in a way, that's what I wish for my Lucy, too.  Beauty, silliness, and of course the mind of a genius.  In my book, she's already there!
I feel like I spend an exuberant amount of time on this blog, and probably in life, talking about Imma.  In a sense, it seems that I should spend the majority of my time on this blog talking about Imma because one of the main focuses is to help other people who have special needs children.  And Lucy is what is referred to as, "typically developing."  However, most people with special needs children also have other children who are special in completely different ways and I think it is important that we also discuss some of the things we need to consider when it comes to raising our "other" children.
We debated for a long time about whether or not to have a second child.  I was 10 years old when my first sister was born--no brothers in between either, just an older brother--and I remember how elated I was to finally have a little girl to play with. Things were a little different than I had imagined since I was so much older but now I am very good friends with all three of my little sisters. (Yes, I now have 3 sisters.  And I am very old!) I wanted Imma to have that, too, that indescribable bond that only sisters can have.  So, when Imma was 2, we decided to have another baby and we were very happy to find out that the baby was a girl. Of course, we would have been happy with a boy if that's what we were given but I knew there was going to be something special about having two little girls.

Lucy at almost 8 months, March 2011

When you have a child that is born "normal" and then begins to develop special needs later on, you don't watch home videos the way that other parents do.  Videos of Imma's first birthday party, trips to the zoo from when she was 14 months old, etc., become "footage."  They are dissected.  We analyze her gaze, her gait, her speech, her smile.  Anything and everything that could possibly be a clue as to what went "wrong" is viewed and reviewed.  The same can be true with children that are born after a child with special needs.  From the moment Lucy took her first breath, she was watched more closely than a pot on the stove.  We had to make sure that, if there was something that needed our attention, we caught it immediately.

We were very lucky with Lucy.  She developed normally and continues to do so.  She met all of her milestones on time or ahead of time. The only thing "different" about Lucy is that she is a little small for her age, though her head is in the 90%.  But that's okay.  There's nothing "wrong" with Lucy.  In fact, Lucy is ahead in many ways.  She speaks very well.  She surprises me all the time with what she knows, like counting to 12 one day at Wal-Mart just before her second birthday.  She's not particularly coordinated compared to her sister. She doesn't like to climb or run or jump like Imma.  She likes to look at books and loves letters.  She loves to color and sing songs.  She loves to watch "Shortcake" and "Yeti," which is Lucy-speak for The Backyardigans.  And she has the heart of a little girl who understands, even at 2 1/2 what it means to have a special sister.

Silly Lucy at 2, 2012

We have asked Lucy to do things that seem unfair.  We have asked her to travel back and forth to therapies hundreds of times.  We have asked her to sit in the waiting room for countless hours and play with the other "siblings".  We have asked her to try to be sympathetic and understanding in situations where adults would have trouble understanding why they had to be so. We've asked her to leave public places in an untimely fashion when her sister just couldn't be there any more.  We've asked her to put up with what may seem like ridiculous statements, like I'm not her mommy because I'm Imma's or only Imma can have french fries at the drive-through, because Imma perceives it to be so.  We've asked her to wait her turn when it's been her turn.  We've asked her to wait again when she's already waited. We've asked her to share when she shouldn't have to, or go without for a while so her sister can have two.  We've asked her to be compassionate and understanding, patient and calm, kind and loving in situations where we, as logical adults, sometimes struggle with those emotions.  Most importantly, we've asked her to be her sister's friend, no matter what, even when her sister is not being a friend to her.

Lucy in the waiting room at therapy

And, amazingly, for the most part, she does all of these things.  Even through the "terrible twos" most of the time, Lucy is loving and patient and kind.  She is calm and resourceful.  She is smart and solves problems.  She loves her sister.  She is her sister's best-friend.  Lucy will often give up whatever she has if Imma wants it because she wants her sister to be happy. It's almost like she understands that Imma isn't like everyone else.  There are times when Imma is speaking or doing something odd that Lucy will look at me as if to ask, "What is she doing?  Why is she saying that?" And then, with a shrug of the shoulders, she's off playing again, always wanting to do whatever big sister is doing.  We've had a few moments already when we've looked at each other, smiled, and gone on about our business, just a little glance to say, "That's Imma!"

Lucy and Imma walking Barkley, May 2012

Lucy repeats Imma often.  She emulates her. She walks like her, spins like her, sings the same songs, wants the same toys and books. Lucy worries us momentarily from time to time when she does something a-typical, but then we realize she is just mimicking Imma. It's very normal that she would want to be like her sister because all little sisters want to be like their big sisters from time to time.  And sometimes Imma wants to be like Lucy, too, which is wonderful.

My gorgeous little model, December 2012

As Lucy continues to grow and change, I pray she keeps her amazing spirit. I worry about her because she has a lot of weight on those little shoulders.  I hope to find a way to let her know that she is just as precious and important to me as Imma. Imma is my world, but Lucy is my sunshine.  You can't live in a world without sunshine and I can't imagine what life would be like without Lucy.  Of course having a second child has made life more hectic but in a lot of ways, it's made life more normal, too.  We now know what we should have been seeing with Imma along the path of development.  When I ask Lucy a question and she answers with a complex sentence in her little baby voice, I am amazed because I missed all of that the first time.  It doesn't necessarily make her a conversational genius that she can tell me, "No, I don't want a hot dog. I want chicken nuggets," but it sure makes this mommy happy.
If you have an a-typical first child and you are debating whether or not to have another child, I highly suggest that you do.  If your older child is autistic, there is a greater chance that your second child will be as well, but it isn't a certainty.  In fact, there's still a better chance that the second child will not be autistic.  We have recently learned that Imma is mostly likely not autistic so it turns out this would not have mattered with our second child, and no one knows enough about Imma's probable disability, sensory integration disorder, to know if it is genetic or not, to my knowledge. If we had not decided to have Lucy, I am quite certain my life would always be missing something.  You may regret not having a second child but you will never regret it if you do.
I've never met anyone who didn't love Lucy, my Lucy, my sweet little Lucy Kate Annabella.  Thank you for taking the time to get to know her a little better. She really is an amazing child.  And that, I suppose, makes her a-typical after all.

Christmas Challenges with a Special Needs Kiddo

1) Santa is scary!  Imma was terrified the day he came to visit the kids at school.  Can you say an hour with her hands over her ears and her eyes shut?  Not kidding, an hour!  Thank God for her wonderful sped teacher who helped her get through it!
2) Snowmen can be scary!  The animatronic kind anyway. We have one and Imma used to love it but this year whenever anyone would say the word, "snowman'" she would literally freak-out! "I don't want a snowman!  No snowman!"
3) If you dare to put presents under the tree, expect to have presents unwrapped early.  And daily.  (So we don't do that any more!)
4) It's kinda creepy when you tell your very literal special needs child a man is going to be sneaking into our house tonight through the chimney.  So go to sleep. Oh, and let's leave him a snack.
5) Explaining why no one else gets to go up or down the chimney, no matter how good of a climber you happen to be.
6) If it is snowing and icy, expect the new bike to be ridden around the living room. And for any furniture that dares get in the way to be severally chastised.  "No, chair!  Don't do that!"
7) Trains are cool to ride but expensive.  Pre-shows to trains are loud and scary.  If you must sit through said pre-show, bring some headphones or a smartphone.  Make sure you give fair warning when train ride is almost over.
8) If Baby Jesus wants a cake, be prepared to share with Imma!  And when we sing happy birthday, it better be to her!
9) Church is fine if it's not too loud.  (In the past when it has been too loud, Daddy has spent the entire service sitting in the lobby, trying to keep Imma out of the sanctuary.)  Be prepared for statements such as, "I don't really like this book," because the Bible has no pictures.
10)  Finally, it is difficult to explain that no we can't do this again tomorrow and yes we do have to wait an entire year.
We had a wonderful Christmas and we are blessed to have two beautiful little girls to share it with.  Merry Christmas from the Van Horns!

The Journey to "Normal," Part 6: Kindergarten

First of all, Merry Christmas Eve to all of you. I debated about whether or not to post this today but I'm certainly not posting anything tomorrow so I am writing it ahead of time and scheduling it to post. I hope y'all get to spend some quality time with your families and experience at least one excited child because there is nothing like the joy of a child at Christmas. Let's get back to the journey . . . .

 I quit my job. After 8 years at the same school district, where I had at least 50 friends I would seriously consider best-friends, call them in a second friends, and more connections than I could ever possibly to count, where I had hundreds of kids I worked with, loved, and wanted to keep in my life, where I had countless promises of becoming an administrator someday, I walked away. I did it for my daughter. It was the fourth best decision I ever made (I'm married and have two daughters, you can do the math.) When I made the proclamation at the pre-ARD (Admission, Review, Dismissal) committee meeting that I was willing to pull my child out of the school district, it was for two reasons that I was able to confidently make that statement. First of all, we had already moved a year before and Imma was attending school there solely because I worked there. Switching her would be no problem. I, on the other hand, needed some more assurance before I took my own toys and went home. Imma and I are a package deal. I felt emphatic about the necessity of her being at the same campus I was on. The campus I worked on at that district did not have an autism, STC (Structured Teach Classroom) so if we stayed there, we would have to be at two separate campuses. They were not budging on putting her in regular kindergarten and I wasn't budging on keeping her out, so I quit.

 When I interviewed for my current position, it was as if God was putting all of the pieces in place, just for me. I am the first and only Reading Specialist this district has ever had. They needed a teacher with a background in RTI (Response to Intervention). Both of those two areas are where I excel. They also wanted someone certified to work with second language learners and a potential administrator some day. That's me. My interview went really well. I immediately felt welcome and loved the campus and the principal. I was in awe of the central office representative who came over (and still am!) as she is amazing and everything I aspire to be someday! And the teacher who sat in is now one of my best friends. For me, it was meant to be. But I was also interviewing them. I asked about an autism unit. The principal explained that they didn't have one. They put autistic kids in regular classrooms with whatever support they need and provide training as necessary. The central office representative elaborated by saying, "We rarely see any need to remove autistic children from the regular classroom. They can handle the academics, we just have to support their behavior." I remember asking her if I could hug her. I really wanted to! That was exactly what I needed to hear. A few days later I was offered the job. They could have paid me in skittles and I would have taken it.

 So sitting across from Imma's principal and telling her I was prepared to remove Imma from the district was not so scary. Fighting an ARD committee is. If you ever find yourself in a situation where you need to fight the ARD committee, be sure to check into your rights ahead of time. It's basically a ten day waiting period and then a reconvening to see if anyone has budged. They can get very ugly. The state can be called in. We would have gone there if we would have had to, but we didn't. Before I agreed to the ARD's recommendation, I spoke to my new principal, and the head of special education in my new district and confirmed that nothing I agreed to would matter if the classroom they were recommending didn't exit in the new district. Be advised, however, if there had been an autism unit in my new district and I would have agreed to the old district's recommendation, Imma would have had to be in the autism unit in the new district for 30 days until the ARD could change the ruling. Something to keep in mind.

Imma's first day of kindergarten

 But we have no autism unit so Imma was placed in a co-teach classroom. She is in regular kindergarten with a special education teacher who comes in for a few hours a day to help support all of the special education students in that classroom. Imma also receives 20 minutes of resource. This is where the special education teacher takes Imma and another special education student out of the classroom and works with them in a small group to make sure they understand everything taught in class. When Imma misses things, it is due to her inability to process language, not a learning disability. This twenty minutes was actually a change from the original recommendation, which was 40 minutes. The new ARD committee felt Imma would benefit from more time in the regular kindergarten classroom and cut her time in half. Yes, the ARD committee wanted Imma in kindergarten more. Essentially, the new district switched the times from the old district. We went from 20 minutes per day in kindergarten at the old distirct to only 20 minutes a day out of kindergarten, plus speech sessions two or three times a week for about 20 minutes. So how is Imma doing in kindergarten, the place I was told she would never, ever be able to handle it and would be completely unsuccessful? She is thriving! Her language is taking off. Her speech teachers are incredible. We had some behavior scares earlier in the year but we also have a behavior specialist on her team that visits her every week and a school psychologist who checks on her. Her behavior is better than I would have ever hoped. She isn't perfect but she isn't hurting other children and it's been determined by her team of experts that most of the acting out is due to sensory issues. There seems to be a lot of evidence pointing toward a sensory integration disorder, not autism. In fact, some of the most experienced members of Imma's team have given my information to show why it is most likely a sensory processing disorder and ways we can help her. They don't think she was, is, or ever will be autistic. I also must say that Imma's kindergarten teacher is outstanding. She has figured out a way to communicate with Imma and to get her to comply like no one I've ever seen. She loves her special ed teacher, too. She's just in incredible hands. Nine people, yes nine, work with her to make sure she has everything that she needs, led by an extremely caring principal and head of special education who treat her as if she were their own and don't mind too much when busy-body mommy can't seem to cut the apron strings.

Imma at school

Let's talk about autism again, because I think it's important that I am clear about something important. The district Imma was in before explained to me that she was not autistic but that she would be labeled as Early Childhood Non-Categorized Autism and that she would qualify for services because of this label. Remember, I am an educator who works with students with learning disabilities everyday. To me, this sounded very much like they were saying Imma qualified for special education services due to this ECNC label. It was only after I left the district that I found out that is not the case. There is not a qualification for special education called ECNC. You are either labeled as autistic or not. Imma was not. Imma qualified for special education as a speech only student. In education, we basically look at special education students in two heavily populated categories, (and some other categories with less students, such as autism) those who are "speech only" and those who have learning disabilities. "Speech only" students still fall under the special education umbrella but their disability could be something as simple as stuttering or lack of articulation. Imma's speech qualification is more complicated because it is language processing but she still fits into the speech only category. She can get the necessary services she needs because of her inability to process language but she is not learning disabled or autistic. If the school district is suggesting your child be tested, make sure you ask specific questions about the areas where it is suspected that your child may need additional support. And make sure that whatever the school district tells you is an area of qualification is, in fact, a legal qualifying disability. You can find more information about these qualifications on your state's education agency website. I was pretty shocked when I found out that Imma could be placed in an autism unit based on a special education qualification of speech only. I have no idea why anyone would want to put a child capable of so much in such a restrictive environment. In fact, the criteria special education teams are supposed to consider first is called, "least restrictive environment." If you are ever in a situation where a school district wants your child in a restricted environment, ask what options are available that are "less restrictive." I can't promise they won't get ticked off that you know that phrase, but it will let them know you mean business and you know your rights. I certainly used that phrase several times and had the "autism schedule" I mentioned earlier thrown in my face. Under the circumstances, all I can honestly say is that district should be very happy I am not a litigious individual.

 Imma is doing so well in kindergarten. Teachers come up to me all the time and tell me how amazed they are at the progress she has made. I am, too. We have our struggles but she is beginning to answer questions, tell stories, talk about her friends and what she did that day. Her speech is becoming more clear, though she is still confused about the trickier parts of speech, pronouns and what-not. She is a different child. I know she is going to make it, eventually, she will get caught up. I don't know if she'll ever be "normal" but in a lot of ways, I'm not normal either and that's okay. I want her to be able to communicate, express herself, be successful, know the joy of friendship, love, have her own children someday in 30 or 35 years. And I believe she will. I truly do. Children rise to the expectations we set for them. Luckily, the staff of her new school has the same expectations for her that I do, they are the same as any other child in kindergarten. I shutter to think of what might have happened if I didn't stand up for her the way that I did. She may have qualified the next time she was tested for autism, which was originally set to be April 2013. When I asked the diagnostician at Imma's new school if she was going to be tested for autism in April, she said, "Why would we do that? There's no evidence to support a need to test for autism." Ahhh, the words I've longed to hear for so many years.

Imma even does some modeling now for my boutique. 

This journey is not over, of course. Imma will continue to learn new things, say silly things I think you might like to hear. I'm sure we'll have more bridges to cross, especially as we begin to explore Sensory Integration Disorder. I hope you will continue to follow our journey. I've been so amazed at the amount of readers we've had. So many kind messages and comments. I so appreciate your love and support.

 Just two more things I want to say on this topic, for now. First and foremost, be the advocate for your child when s/he needs one. If you don't, who will? If it doesn't seem right, keep asking questions until it does. If you don't feel like something needs to be done, don't do it, not right now anyway, keep looking. At the same token, you must keep pressing forward. Whatever it is that is making you wonder if something is wrong with your child will not just go away one day. You're going to have to work to make it go away. And it's hard work. But you can do it! And I'll be here to love and support you, as will hundreds more parents who have come before you. Just reach out to us and let us know you need help and we'll do everything we can.
 The other thing I must mention, which is not pleasant but has to be said is, let yourself grieve! It's okay to be upset and angry and frustrated and mad as Hell. You didn't ask for a differently-abled child, none of us did. There will be times when the only way to move forward is through the tears and the internal screaming. It's okay. I read somewhere once when I was feeling like the worst mother in the world, feeling like I shouldn't be feeling sorry for myself, that I actually DID need to feel sorry for myself. You must literally go through grieving process as if you have lost your child to get through this and move on. At first it may seem disrespectful to parents who have physically lost a child, and I understand that and apologize for it if anyone is offended. But what I had to realize, and what you will hopefully come to realize is, you did lose a child in a sense. You lost the idea of your child. The one I had imagined, that chatty-Cathy Imma, precocious, and ever the social butterfly, she was gone. She would never exist, not as a small child anyway. I had to cry for that little girl. I had to mourn her loss so that I could move on and accept the child I do have. Unlike a parent who has lost a physical child, I am so blessed that my baby is physically just fine and that I can move forward with her and continue to make progress. But until I let that other child go, I was unable to see that my child really needed help. At that point, when I had done all of my crying for pretend-Imma, I could learn to help the real Imma.
 Now that isn't to say I think I'm done crying over Imma. I still get upset when I feel like she doesn't understand or obey the way I feel she ought to or if I feel someone else is being unfair to her. When she acts out or hits me or her sister, I cry sometimes about that. But it's nothing like it used to be when I just could not understand what was wrong. We are past that now. We still don't have an official diagnosis beyond speech language disorder, but that's okay. I now believe that labeling Imma too soon would have been catastrophic and I am a proponent of waiting to label children, particularly in an educational setting, until results are absolutely confirmed and necessary for a child's programming.

This has been a lengthy post and a lengthy series. Thank you for following our story and please continue along with us as we continue to find the ever-elusive land of "Normal."