Disney World......on Autism.......Chapter 1

We returned from Disney World on December 10th and it is currently December 31st. Apparently it took 3 weeks to fully recover from our "magical" experience. This will be long as we spent 8 days in Florida, so bear with me....I think it'll be worth it. My husband and I have been planning this trip in our heads for several years. We REALLY wanted to take our kids to Disney World, but just weren't sure how fun the experience would be for two kids with Autism. After our disastrous first experience at Elmo live, I swore that it would be years IF EVER before we attempted Disney. I couldn't imagine my two boys spending that much time being bombarded by sensory input in the form of Disney shows, fireworks and parades. I sadly told my husband that our children would probably never enjoy Disney World....we couldn't even make it through a movie or obviously an Elmo show. So....we spent the last 3 years taking our boys to special sensory showings at AMC once a month without fail. We voyaged out to local zoos, theme parks and eventually another Sesame Street Live show and Toy Story on ice. It was a slow and painful process....but we plugged away. Finally this summer we bought season tickets to World's of Fun (a local amusement park). I have no idea how many times we ended up going to the park, but by the fall I saw how much the work had paid off. Max ran to hug Snoopy excitedly and without any fear. Nick sat through a loud singing and dancing show AND actually enjoyed it! He sang and danced along and brought tears to my eyes. We went on ride after ride after ride and the boys were in love with the feeling of spinning and freedom on those rides. So...we took a deep breath, invited Grandpa and Grandma Hill and book an 8 day, 7 night "vacation" to Orlando, complete with plane tickets, hotel rooms on site and 5 day park hopper tickets. Did I mention that I am terrified to fly??? I had not been on a plane in over 8 years and was paralyzed at the thought.....but I figured if my kids could all these amazing things, then I could get on a darn plane for them! (With a healthy dose of Klonopin of course) So....vacation goes like this:

Day #1: We drag the kids out of bed at 5:30 in the morning and haul butt to the airport. Once at the airport, I drug myself into oblivion, we somehow make it through security without losing any children or luggage and we wait for our flight. I informed someone that we were flying with 2 children with Autism and we were granted special passes to board the plane first. THANK GOD. We were able to pick out the best seats for our kids and we sandwiched one of them between each of us and a Grandparent. I was worried the kids would be loud or start their verbal stimming or just generally be scared and upset and piss off the other passengers. Apparently I forgot that this was a flight to Orlando.....the MECCA for kids....our flight was packed with families. My kids were generally entertained by their carry on bags full of bribes and surprises and were no louder than any other kids. I dozed in and out of consciousness.....grateful for Grandma who braved the tiny bathroom with Nick. (He refused to go in it a 2nd time) :) We landed, navigated the airport and boarded a bus for our resort with little incident.....other than the fact that it was REALLY busy. Day #1 ended with some shopping time in Downtown Disney, including a store with an amazing selection of Mr. Potato Head goodies (much to Nick's pleasure). The shopping was a bit overwhelming for the boys, and we had a couple of minor meltdowns (which resulted in a purchase of the bribe of some CARS by grandma). In general, the boys did ok and were mostly unfazed. Unfortunately that ended when Nick saw the pool back at our hotel.....and had to be carried kicking and screaming to the room.

Day #2: We headed to Hollywood studios and once on site, we made a be-line to the Guest Relations area. I explained that I have two children with Autism and produce letters from the Developmental Pediatrician stating that they will have difficulty in crowded areas, long lines and excessive noise. The lovely man helping me didn't even glance at the letters....but wrote me out a special Guest Assistance Card or (GAC). This little gem would allow us to enter all rides either by the handicap entrance or in the "fast pass" line, thus bypassing the majority of the line on rides. They also put a "wheelchair" sticker on our stroller, which allowed us to use the stroller in place of a wheel chair in handicapped accessible areas....sooooo much easier to keep the boys contained that way!! Bless Disney for being so understanding of kids like mine.....I am truly grateful.

We headed right for the Toy Story ride (where we were able to bypass the majority of the 40 minute wait). The boys had SO much fun shooting at 3D targets (or at least Nick did....Max refused to wear the glasses or shoot the targets). The rest of the day was a blur of meeting characters (Mickey, Pooh, Daisy, Donald, Pluto, Goofy, Chip 'n Dale, Buzz Lightyear and Woody) and going on rides. The boys were literally ecstatic to meet all the characters!! They grabbed their special autograph books (thanks Grandma) and ran to hug each character, pose for pictures and get autographs. It was an amazing gift for me to see my boys react with such joy! By 3:00 we found a spot to watch the parade and ate lunch while we were waiting. Once the parade started, both boys were fixated on the floats and the characters and OMG we even saw Mr. Potato Head in the parade!! The boys did awesome....I took pictures of the awe on their faces while we watched the parade go by.

Shortly after the parade ended, we headed to a stadium (literally) to watch a stunt show with cars. We bought popcorn, settled in and the show began....wow.....I guess I didn't expect those car engines to be SO loud. Nick got a shocked look on his face, covered his ears, commenced screaming and attempted to run out of the stadium. We tried to calm him down, which was just not going to happen.....he was in sensory overload. We earned some interesting looks from people nearby and Grandpa finally made a hasty exit with Nick. Cue the second time in two days that tears sprang to my eyes....it's hard to see a 6 year old become so panicked. On the other hand, Max LOVED the stunt show and cheered when Lightening McQueen made an entrance. That was worth staying for. :) After the show was over, we met up with Nick and Grandpa.....Nick began issuing direct and clear orders, "come on, let's go bus!" Poor kid....it was only 5:00 and we had a long night ahead of us.

We rode the tower of terror (Max was too small, but Nick rode!!) By 5:45 we worked our way to one side of the park to wait for the Osborne Family Christmas lights to come on and "dance" to music. What an amazing spectacle of lights this was!! The boys were ecstatic with literally wall to wall Christmas lights lining two blocks! Their eyes shined as we pointed out all of the colors and labeled all the decorations....a carousel, a Christmas tree, even a bicycle all outlined in Christmas lights. Like magic (or by a special snow machine), little snowflakes began falling which caused quite the reaction!! Sadly, we had to hurry away after a few minutes to try and make it to the Fantasmic showing at 6:30. We arrived just as the show began and were informed that it was "standing room only." As we hurried into the theater, Nick finally let out what he had been holding in for several hours. His frustrations erupted in loud, throaty, hysterical screams that told us this show was far too loud for him to handle. We decided to leave the show and oblige Nick by heading out of the park and getting on a bus. Unfortunately for him, Mommy and Daddy had what we believed to be an amazing surprise in store. When we scheduled this vacation (4 months prior) we also booked dinner at Chef Mickey's (at an astounding $60 a person) where we could dine on a buffet and visit with Mickey, Minnie, Donald, Goofy and Pluto as they wandered about the restaurant. We just KNEW the boys would love it! Honestly, they did love the dinner....there was such excitement as they saw each character and got autographs. We took pictures and the looks on Max's face were priceless and full of joy. Nick managed to locate macaroni and cheese in the shape of Mickey heads and was ecstatic to be enjoying some special shaped macaroni (a current obsession). Grandpa decided to get in on the fun and signed both autograph books for the boys with "PaPa :)." Max was in hysterics when he saw this....he screamed and smacked Grandpa's hand and tried like hell to wipe the autograph off of the page. He was seriously upset....and I think it's because he knows that ONLY the characters are supposed to sign those books!!! We left the restaurant with full tummies and happy hearts only to realize that the fireworks were getting ready to begin just across the street at Magic Kingdom. We went out onto one of the hotel's balconies to watch the show. As the fireworks began in all their glory, Nick got that familiar panicked look on his face. He started screaming and bolted as fast as he could, running inside and down the hotel's hallway. Grandma chased after him and brought him back to the window where he could watch the fireworks from inside without being bothered by the noise. It wasn't long before Grandma began to hear the familiar gagging noises coming from Nick's throat. She grabbed him and they ran like hell to the bathroom! As she pushed open the door to the bathroom, Nick began retching and vomiting his $60 dinner all over the bathroom tile. She was just grateful that it wasn't on the carpet....and that he was able to finish vomiting in the toilet. The rest of our crew finished watching the fireworks display and made the long trek back to our hotel via Disney bus with Nick (who smelled terribly like barf) and myself (definitely in need of some wine), and Daddy (who was immediately sent to the liquor store), and Grandma and Grandpa who looked like they couldn't believe what they had gotten themselves into. We finally made it back to our hotel, gave the boys late baths and went to bed.....the next day was another FULL day at Magic Kingdom. I was terribly discouraged and very certain that this day was only the beginning of what would be a really, really tough week for all of us.

Who Knew??? An Autism Friendly Amusement Park!

It has been a LONG time since I blogged......I have so much to say that I don't know where to start. Soooo......I'll start by talking about our family's experience at a local theme park (World's Of Fun) this past Saturday night. We went for the infamous "Boo Bash" where the park has been transformed for Halloween. Apparently the rest of the world went for the same thing! We have season passes to the park, but still managed to be directed to park in a lot we never knew existed. There were literally HOARDES of people coming into the park as it was open until 1:00 a.m. As we entered through the front gate and a crush of people, Allen and I looked at each other and silently both thought, "maybe this wasn't a good idea." We generally try to avoid ginormous crowds if at all possible.....it's just too much for our boys to handle. Then a light bulb went off in my head.....DING!! I seemed to remember that Allen had checked earlier in the season and found that World's Of Fun had "Autism passes" for the rides. We hurried our butts back out the front gate to customer service to ask.

Unfortunately Nick had already spotted the first ride he wanted to go on and was screaming "BLUE'S CLUES!!!" and crying throughout. We made it to customer service where they filled out two green passes (one for each special needs kiddo) and wrote their names and the date on the cards. We were instructed to present the passes at the exit/handicap entrance of any ride and we would be allowed to bypass the line! HALLELUJAH!! Who knew WOF was so Autism friendly??? So....we went back into the park and headed straight for the ride Nick calls "blue's clues" which is actually a giant ride that is painted blue and spins in a huge circle. We decided to brave the line and see how much the boys could handle. I think the ride went through about 3 cycles before we actually made it on the ride. Throughout our wait (Nick especially)was becoming hysterical that we continued to wait. He cried....he screamed....he tried to run out of the line up to the front.....he laid on the ground and he just didn't understand that we had to wait our turn. People were giving us dirty looks because he was acting out, but honestly this is all pretty tame for Nick. So...we waited our damn turn and finally got on the ride. As soon as the ride started spinning in circles, Nick got a faraway and peaceful look on his face. The ride went faster and faster and Nick's smile grew larger. I was fascinated...to me it looked as though the world finally made sense to my little boy. He had a few moments of peace without extreme sensory overload. Well....after I saw that look in my little guy's eyes we marched right over to the next ride he loves....The Octopus! Now....if you've ever waited in a full line for this ride you know that like a Ferris Wheel it takes FOREVER to go through one darn cycle. So....I took my happy ass and our little green passes to the handicap entrance and presented them to the ride operator. We were on the ride in less than 5 minutes. Some people think I am abusing my kid's special needs or that it's unfair not to force him to wait in line. I say that perhaps those people have never had a child who does not have the capacity to understand "wait." Those people do not have a child that grows hysterical to the point of embarrassment on my end and irritation and discomfort by everyone else waiting in line. Those people have never tried to restrain a 60 lb kid just to force him conform to society's rules which he does not yet understand. So...yup....we skipped the darn line and it was wonderful....and I got to see Nick at peace once again if only for a few moments.

We even got to do a little bit of Autism Education at World's Of Fun that night. We were standing in line to enter the trick-or-treating house and Nick was becoming impatient. The poor girl in charge of the line was only about 16 years old. She was just trying to let the group ahead of ours get farther into the house so we wouldn't be right on their tails. Nick was crying and I was holding him up so he wouldn't fall to the ground and start tantruming. She asked me, "is he scared?" and then went on to try and reassure Nick that there was nothing scary inside the building. I finally said, "He has Autism.....he's not scared." She looked at me with a blank look on her face as did the father standing next to us with his children. I took a deep breath and said, "He has Autism and it means he has trouble waiting because he doesn't understand why he has to wait." I saw the light bulb go on in both of their heads....thank god for some understanding. The father glanced at Nick and at his two children and said, "Yup, well....sometimes it IS hard to wait." He wasn't being a smart alec.....he was letting me know that he understands and making me feel normal about my kid's behavior.

The only other time we used our special passes was when we went to Camp Snoopy (the children's part of World's Of Fun.) We used them on one ride that had a really long line. Max and I were able to wait in the "normal" line while Nick and Allen waited at the handicap entrance. We found that Nick was able to wait patiently for that ride and join me and Max when our turn came to get on. I think it helped that the handicap entrance was quiet and empty.....at least he could wait in peace. Now....not to leave Max out of our little adventures. He also has a hard time waiting in line (but not usually as much as Nick). He and I were waiting in line for his favorite kiddie ride.....and the line was extensive. I felt guilty using his pass to skip ahead of a bunch of kids though, so I just tried to made him wait. He was really interested and inched towards the front of the line (out of my sight) to watch the ride go up and down. I waited a minute and then headed up toward the front of the line to reel him in. I couldn't find him and immediately started panicking......I asked someone, "did anyone see my little boy come up here?" One woman asked me, "Is he wearing a red shirt?" "YES, I said" and she pointed at the ride where Max was being buckled into a seat. That little turd snuck up to the front of the line and onto the ride before I could catch him!! Of course I was horrified and apologized to the kids at the front of the line, but I did chuckle a little as I waited for the ride to be over. How do you punish a kid for cutting in line when they don't understand? Max's little mind just knew he wanted to be on that ride and he accomplished his goal! One day I hope the two of them will understand and be able to wait in line like all the other kids. If not, I won't hesitate to uses special passes when necessary but man 'o man, I sure will wait in the longest line at any amusement park if it means my kid understands. Thanks to World's Of Fun.....we had an amazing night!!!!

Adventures in Autism Land

Let me start off by saying that I understand raising ANY type of kid is sure to be an adventure in itself. Raising two boys with Autism guarantees me an adventure every day of my life! The last couple days have been especially trying with my two little guys! My husband has been in Iowa helping to care for his father after a Quadruple Bypass. So.....if I thought I lived the life of a single mother before...well.....I am really living it now. I had to get out of the house, just to keep myself sane....and then I realize what a HUGE mistake that was!

Yesterday the boys and I decided to brave the newly opened Trader Joe's all by ourselves. Mistake #1. The carts are pretty small, so I could only confine Max and tried to rely on Nick to walk close by. Well....Nick had plans of his own. We spent the first 10 minutes in the store with Nick running wildly, walking on the pipes that run under the deep freezers, spinning in circles and just generally acting like a maniac. I handled it pretty well for awhile....tried to keep re-directing Nick to help me pick out fruit, try samples of lemonade...whatever, but it just didn't work. Maybe if they had samples of wine.....but I digress. So....I finally got down on Nick's level, had him look me in the eyes and said, "If you run off again, you will have to ride in the back of this cart." I'll be damned if that kid didn't immediately run to the freezer aisle to walk on the pipes again!! I calmly picked up all 59 pounds of him and deposited him into the back of the tiny shopping cart. Cue the LOUD, ANNOYING, MAKE YOUR TEETH CLENCH scream out of NIck's mouth. You would have thought I was whipping the child within an inch of his life by the sounds coming out of his mouth. I don't know if people are becoming more tolerant or if I just care less than I used to, but it didn't get much of a reaction. Some people looked in our general direction just to make sure I wasn't actually beating him, but then continued on with their shopping. SO....I pushed around that stupid, tiny cart full of about 90 pounds of boys for the next 30 minutes or so. Eventually Nick stopped screaming and even managed to help me pick out some new treats to try. He became obsessed with the balloons the store had and calmly told the lady at the counter, "I want a balloon please!" She asked what color he would like and he responded, "Pink!" Max could not be left out and Nick assured him, "Here you go, Maxwell" as the lady was blowing up his blue balloon. Yeah....we had a pretty good night :)

Today I again subjected myself to spending the majority of the day in public with my kids. We went to the doctor's office, met my BFF and her son Blake for lunch and play and McDonald's and continued on to shop at Target. Now....if you know me and Ellee (BFF), you know that we can spend and entire afternoon at Target. I immediately contained Nick to the back of the shopping cart this time! He did a pretty good job, with the exception of the verbal stimming throughout the trip. So....we had lots of loud yells and screams for no apparent reason. Again, most people ignored the majority of the screams...surprisingly. I asked Nick to "use his inside voice" which resulted in a few "quieter" yells that eventually worked themselves up to full throttle....sigh. Luckily Ellee and Blake are used to being around my kids and are pretty darn tolerant. At one point, Nick informed me that he had to "POTTY" and could not wait, so I braved the bathroom with Nick and Blake in tow. As soon as I took him out of the shopping cart, Nick was off like a caged animal. Blake and I chased after him, as he spun in circles, ran and eventually disappeared behind the jewelry counter. I cringed about what Blake (yes a 4 year old) must be thinking...and I told him, "sometimes Nick has a hard time being a good boy." This was my way of explanation for the odd behavior that I know Blake must be noticing by now. Blake told me, "Sometimes I have a hard time being good too." Ahh.....I coulda kissed the kid for making me feel....well....a little normal for once.

We made it through the rest of the shopping trip with little incident, said our goodbyes to Blake and Ellee and drove home. By this time I was exhausted, sweaty and wondering why I take the kids with me everywhere I go. Later, I asked Nick, "did you have fun playing with Ellee today?" He repeated what I said, "Have fun playing Ellee today." I assumed he didn't really understand the question, but continued the conversation with, "who else did we see today?" Nick looked up at me (kinda like I was an idiot) and said, "Blake!" I was shocked....I know it seems small to most people, but what a big deal for Nick! And finally I was reminded that there is a reason we don't hide away.....thanks Nick (and Blake)for helping me remember.

Never, Ever, Ever Give Up!

My kids are so amazing sometimes.....lately they have been leaving me more than a little speechless with some of their progress. We have been working really hard with Max on requesting. For awhile, we let him get by using only one word to request drink or "dink" and taking "help" for most other requests. I started to make him say, "I want ______" and it was pretty slow goings at first. Now though, he is starting to understand that he must use those 3 little words to get what he wants. For instance, yesterday he grabbed my arm, pulled me in the direction of his cup and said, "dink." I picked up the cup and said, "What do you want?" I could see the little wheels turning in his head and then the light bulb moment...."I.......want..........dink!" It's not always easy to understand, and a lot of times I have to parrot the words for him to repeat, but I am so proud of this progress!!! I know he's trying so hard to say new things, but sometimes those darn words just won't come out no matter how hard he tries!

Another rather inventive thing he's been doing lately involves the use of his I-Pad. The first time he did this was a couple weeks ago....we were sitting in a chair watching t.v. together and he started saying "cookie." I ignored him because it was close to dinner and he was NOT getting a cookie. He kept repeated "cookie, cookie, cookie" and pointing in the direction of the kitchen. I pointedly ignored him and he ran off to get his I-Pad. He pulled up the pictures we had loaded onto it and located a picture of himself eating a cookie. He looked at me, pointed at the picture and said "cookie!" I sat there in silence.....shocked. Apparently he thought I was still missing the point, so he scanned through the pictures, pulled up one of Nick eating a cookie, looked at me and insisted, "Cookie!" Well, how could I really ignore that? Yes, I gave the kid a cookie before dinner :) Just yesterday, he used the I-Pad in the same way. He tried to say something to me, but it was unintelligible and he realized I did not understand. He got the I-Pad, pulled up the pictures again and found one of him on a swing at the park. He pointed at the picture and said, "That" and then walked to the back door and stood there. I didn't move fast enough for him, so he walked back over, pulled up another picture of Nick on a slide and said, "that" then went to stand again at the backdoor while pointing outside. He REALLY wanted to play on the swing set in the backyard! I am so unbelievably proud of this new development!! I think we will be adding a lot more pictures to the I-Pad so he can make more specific requests!

Nick has also been doing some amazing communicating lately. He's doing such a good job using multiple words to request items. Our interactions usually go something like this......Nick will open the refrigerator door, pull out a package of pepperoni and either come hand it to me or say, "pepperoni." I will either ignore him or say, "I don't understand what you want?" He lets out a big sigh, looks me directly in the eyes and says, "Miss Mama I want pepperoni!" It's a little obvious that he has been going to school, huh? He has been putting a "Miss" in front of everyone's name lately (including Daddy and Papa) :) I know that Nick wants to stay in his own little world of Autism, but I'm determined to burst that bubble and pull him into our world. Some people might think it's mean to force the eye contact and multiple words, but it's just what we have to do. Someday I hope it will come naturally for him and his Autism won't be so obvious.

Nick and I had a mini conversation last night that just about left me with happy tears. He went to Ocean's of Fun ALL day yesterday with Grandpa, Grandma, Aunt Briley, Daddy and Max. I had to work, but we sat down to have dinner together after I picked him up from Grandma and Grandpa's house. I asked him, "Nick, what did you do today?" He looked me in the eyes and said, "swimming, pool, life jacket, slide!" I said, "Oh my, did you go swimming? Did Grandpa go with you?" He said, "Papa and Briley." I reminded him that Grandma, Daddy and Max were also at the pool and then asked, "What was your favorite part?" He told me, "swimming slides!" I started to tear up just a little and couldn't say much else than, "good for you, Nick, good for you." What can I say? This is probably the closest thing to a real give and take conversation that Nick and I have ever had! He might not have explained things to me in full sentences, but he sure got his point across. I know the important things....he went swimming with Grandpa and Aunt Briley, wore a life jacket and enjoyed the water slides the best.

Autism might be a really tough thing to deal with as a parent, but it's also really beautiful. These type of interactions happen all day long for parents of typical developing 3 and 5 year olds and those parents think nothing of it. On the other hand, each word, conversation, request, eye contact and every tiny interaction I have with my children makes my heart soar and reminds me to never, ever, ever give up on them.

"Tard Whispering"

As I lie here, typing this blog, I listen to Max and Daddy reading a book in the next room. A smile creeps over my face as I listen to Max labeling things in the book and demonstrating the various noises each animal makes. I am SO unbelievably proud that he is able to do these things and so much more. On the other hand, a dark cloud of sadness, anger, and many other emotions works it way into my mind. You see.....something happened at work last week that I just haven't been able to let go. I like to believe that people in my profession like to help other people....that they understand differences...that they are as excited about new knowledge as I am. But....I guess I'm wrong sometimes.....I guess now I know that they laugh and make nasty comments behind my back and even to my face.

Where do I start? I guess I should say that I am teaching a class about Autism for Law Enforcement Officers. The class is meant to help LEO's identify people with special needs and to help them better interact with people who have Autism or other developmental disabilities. It's an important class.....research shows that these types of people are 7 times more likely to come into contact with Law Enforcement!!! Unfortunately, these are not always positive contacts on either side. I thought, who better to educate officers about people with Autism than ME???? After all, I have been in Law Enforcement for 9 years now and have two children with Autism and have educated myself exstinsively. No brainer, right?

So, I have the first class scheduled for June 24th and it is filling up fast. I know there will be many more classes scheduled to involve Law Enforcement other than just the agency I work for. So, I had a recent opportunity to promote this class to another Law Enforcement agency while we were working together. I proceeded to tell no less than 5-10 officers about the benefits of my class and why they should attend the training. I was very passionate and yes, maybe a little over the top, but darnit I'm excited!!! So, the first several officers I speak with tell me they would enjoy the class and to let them know when it is scheduled so they can attend. Another couple agree to attend, mostly because it counts towards training hours :) The next few that I speak with happen to be some higher ranking decision makers.....the types of people that will either allow or not allow these other officers to attend the training. As I am in the middle of explaining the class and why it is so important that they attend, these officers start using words like "retard" and asking if this is a "tard whispering" class and if there will be any actual "Autistic" people in the class? Stunned......I stop speaking and listen as they go on and on about all the "retards" that live in their city and laugh and make fun of them. I cannot speak.....I am in shock.....I think I may cry if I open my mouth. So, I mention to one of them that he will be the only "Autistic" person in the class if he shows up for it as he obviously has no social skills. He tells me that even if he is ordered to attend my class by the Chief of Police, he will make them write him up instead. I walk out of the room thinking that I have never been so ashamed of or dissillusioned with my profession as I am right at this moment.

It took me over a week to write this, because honestly, I am still bubbling over with anger at these stupid, ignorant men. Is this the way my children are talked about behind their back by people who are sworn to serve and protect them? Are my children only "retards" to the rest of the general public?? Have I been lying to myself that I am helping people to understand? First of all, both of my children are highly intelligent, but they have trouble with social and communication skills. This does not make them Mentally Retarded.......and even if they did have a lower IQ that qualified them as Mentally Retarded, it does not qualify them as less of a human being. I hate these men for the doubt they have put in my brain ever since that day. I did manage to call one of their supervisors though and suggest that they may get some benefit out of attending my class ;) Knowledge is power and maybe I can get through to these ignorant asses!

A good friend of mine who also works in Law Enforcment had the opportunity to see these same men no less than a week after I had this experience with them. Apparently whatever she said to them had quite an impact as I have received one or two apologies for their lack of social graces. Unfortunately, the apologies I received where from officers who were not involved in the whole "tard whispering" conversation. All the same, it's good to know that I have friends who won't let people talk like that about me or my children and who will stick up for me when I am too shocked to do it for myself. You know who you are......love ya!

I'm no Saint :)

Here's something my own mother shared with me on Mother's Day this year. Made me cry.....thought I'd share.....

The Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Socially inappropriate....but working on it

Nick and I are having an ongoing battle (that he’s currently winning) about what is socially acceptable in terms of touching. There is a long standing myth that people with Autism have little emotion and that they are generally not very loving/cuddly/social. While this may be true in some aspects or for some people with Autism, it’s not the steadfast rule. In fact, I have found that many kiddos with Autism are very, very loving and desire physical interaction. Just as an example, the first time I met our 8 year old twin neighbor boys (who both have Autism), was when one of them came up to me and gave me a big hug, kiss on the cheek and said, “I love you.” This is where the confusion comes in for a lot of the general public. Kids such as the neighbor boys and my boys both enjoy this type of interaction, but don’t understand why it’s not acceptable.

So….with that said……let me tell you a little about Nick and his social inappropriateness. He REALLY enjoys giving everyone (even random strangers) big hugs. It’s not unusual for him to run and hug 5 or more total strangers in one trip to Target. For this reason, I have tried to keep him contained to the shopping cart, but as he gets older, he wants to walk…..and he is 5 years old, so he should be walking. The only problem is as soon as he sees his target; he makes a break for it…….and I usually can’t catch up with him in time to stop the hugging. So…..I routinely apologize to bewildered strangers that are darn near knocked over by a strange kid hugging them. Until last night, they have always told me that it’s o.k. or not to worry about it, or even that the hug “made their day.” Usually I hear, “awwww……that’s so sweet!” Once an older lady commented, “Yup, I still got it!!” LOL I’m glad people are so understanding, but they don’t see what I see. Right now, Nick is a cute, little, mostly harmless, 5 year old boy. What happens when he is a much larger 12 or 13 year old boy and he still runs around hugging everyone? Nick isn’t obviously special needs as far as his features are concerned, so I’m relatively certain that he’ll be regarded as a weirdo, creeper, pervert if this continues. Who knows? He might even take a butt kicking if he hugs the wrong person’s girlfriend or wife.

So…..after talking with Nick’s teacher at parent/teacher conferences, I have realized this is a problem at school as well. Nick routinely runs and gives fully body/tackle hugs to classmates. Apparently he also does a lot of unsolicited kissing at school as well! His teacher told me that she is trying to deter the kissing especially by telling him that it’s not o.k. to kiss people and by asking him to wave and say “hi” instead. So, now he waves, says “hi,” sneaks in a quick kiss and runs! He has been spending a fair amount of time in timeout at school for this behavior. While that might seem harsh, I completely understand the reasoning. So now, when it looks like Nick is going to run and hug someone, I try to stop him and tell him, “why don’t you just wave and say hi.” Or…..if he completes the hug, I just tell him “remember, everyone doesn’t like hugs, can you just say hi?” Usually the person he’s hugged gets mad that I’ve corrected him for something so “harmless”……sigh.

Anyway….last night we finally experienced someone who obviously did NOT appreciate the hugs. We went to McDonald’s so Nick and Max could play with their “cousin” Blake. Nick probably hugged at least 3 adults within 10 minutes of being in the play area. One was a grandmother and he LEAPT into her arms. Luckily she was a good sport and strong enough that she was willing to hold and cuddle him for a minute. (much to my embarrassment) At one point, I was engrossed in conversation with my BFF when I saw Nick out of the corner of my eye. He was trying to hug another woman, who looked frantic and was pushing him away. She looked REALLY pissed off and I scrambled to get over there and pull Nick away from her. He finally gave up and went back to playing on the equipment…..she ignored me and looked just disgusted…..what a witch!! Now, Nick is not a child who gives up easily…..so it wasn’t long before he went over and attempted another hug, much to this mother’s disdain. Anyway, I went over there again and grabbed him and we left shortly after. While I do think this other parent could have been a little more kind, I have a feeling this is a preview of what’s to come if we don’t nip this in the bud now :(

The Hardest Part

I've been thinking a lot lately about the hardest part of having special needs children. There were many times over the past 5 years where I thought for sure that it could not get worse.....that my heart would break.....that THIS must be the toughest part of having a child with Autism. Over the last year or so, I've started to experience a whole new level of heartache. The toughest part of Autism, at least right now, is watching my children try (and fail) to interact with peers. It kills me when I see how they are treated by other kids (and adults) at times.

What are you supposed to do when another child makes fun of or takes advantage of your special needs child? How much more does it hurt when you realize that your child has NO IDEA that they are being taken advantage of or teased? Honestly.....you are grateful in one sense that your child experiences a certain amount of obliviousness......but your heart grows hard and your disdain for others becomes strong. It's not that I really blame other children for not wanting to play with my kids. It's understandable.....they are wild....they don't talk to other kids or play games with them or understand what another kid wants to do. I mean.....as a child, you can only chase Nick around for so long before you probably feel like he really doesn't want to play with you. Nick might run up and hit you and run away really fast. Your own 5 year old feelings will be hurt.....but you don't understand that Nick thinks he is playing tag. He might come and smack the top of your head really hard......you don't know that Nick wants to play "duck, duck goose." All you know is that darn Nick won't talk to you, or play any games you want to play and.....he's kinda rough.

What am I to say to these kids when they come to me, crying and tell me, "Nick doesn't want to play with me, he won't talk?" I usually just say that Nick has a hard time talking, which usually leads to many, many more "why" questions. How do you explain Autism to another preschooler? How do you stop other kids from ganging up on your kid, when he's such an easy and oblivious target? Will my boys ever have true friends?? Will they grow up with someone to confide in, mature with, who will love them just as they are? I honestly don't know.

In many ways, I am terrified for Nick to start Kindergarten next year....especially in a typical classroom setting. He's been cocooned in his own little world for the last several years in his special needs Preschool class. What will it be like for him to be so outnumbered by typical developing peers? I got a little teary eyed after Nick's last parent/teacher conference. We agreed on a good plan for him in Kindergarten....spending part of his time in a special needs class and part in a typical class with the support of a para. His teacher told me that the para would become kind of a "classroom para" and help all the kids. That way, Nick wouldn't become "THAT kid with the para." Really? Already? It made me cry to think that he couldn't even make it to Kindergarten without being different. All I can hope is that we will get Nick into an awesome school and keep him in the same school where he will grow up with the same general group of kids. That way, hopefully, he won't stand out so much......they'll just remember Nick as always being the way he is. God.....I know I sound like such a babbling idiot....like I feel soooooo sorry for myself.....like other parents don't have it worse. I really am grateful for what abilities my boys DO have, that it's not worse.....but I think it's important for other people to understand what parents like me are going through.

I'm kinda betting that most people don't have to think about this stuff so in depth when their kids are growing up. Sure....other kids have some problems with bullies, or cliques, or not getting invited to certain birthday parties. Think of how it feels for a parent who knows their child will never be invited to a birthday party, or be part of a group of friends or how it feels to wonder if your child is being picked on, but knowing that they won't be able to tell you if they are? My heart hurts for my boys just thinking about this right now. I'm glad that we do have several friends who don't allow their child to treat mine badly, who invite them to parties and are understanding when my 5 year old knocks down their baby or has a 1 year old style tantrum. But I have to wonder....how long will that last?

Take Me Home

It’s no secret that a lot of parents of kiddos with Autism feel helpless, scared and angry pretty often. Many of them live in fear that their child will wander away and become lost, hurt or even die. It’s certainly a very real fear and unfortunately I think most kids with Autism wander away at some point. I know we have lost Nick in more stores than I can count and once at a large amusement park. Many kids with Autism are attracted to water and immediately head for a pool, pond or any other body of water once they wander away. Many ASD (Autism Spectrum Disorder) kids also have little or no understanding about safety and will get right into a pond or pool even if they are unable to swim. These are both true for Nick…..no understanding of safety and LOVES water! In fact, the day he wandered away at the amusement park, he was attracted to the small water park area and went back into it to play longer. The day of the “escape” from our house, Nick had been begging to go play out in the rain. Even if you don’t live near a body of water, the fear of wandering is very real. Many kids with ASD do not fear strangers, are not afraid to be separated from parents, will not respond to their names and will even hide from people searching for them.

Some of you may or may not be aware that I work in Law Enforcement and that I have been assigned to the Dispatch division for the last 6 years. I started to notice officers seemed to be encountering a lot of kids (and adults) who had wandered off and were non-verbal. This often happened in the middle of the night or very early morning hours when their caregivers were still asleep. It took lots of time for officers to reunite the kids or adults with their family members, because they had to knock on every door in the area and search for a caregiver. More often than not, the lost person would be brought to the police station to sit and wait for someone to realize they were missing. It scared me to think that this is probably exactly what would happen to Nick if he ever managed another escape. He can answer some questions, but cannot elaborate on them and certainly does not know his address. For instance, “What is your name?” will get the short and simple answer, “Nick.” We are trying to teach him his last name, but he hasn’t been able to remember it so far. The question, “How old are you?” will get the simplest answer also, “five.” Who knows what he would say if he were asked, “Where do you live?” or “Where’s your mommy or daddy?” My best guess is that he would respond with a silly answer that has nothing to do with the question. He knows he should respond to a question, but isn’t able to really process and answer that question very well.

So…..knowing that this was a real problem, I went to my supervisor at work and asked what he thought about some sort of Law Enforcement database for non-verbal people? I was given the green light to figure out who would qualify, how it would be implemented etc and was told that it could then be presented to our division supervisor. I worked hard for weeks, searching the internet for similar programs, making a power point presentation, typing up forms and scouring dispatch calls where non-verbal people were encountered. I discovered an excellent program called, “Take Me Home” that was developed about 8 years ago by a Pensacola, FL police officer. The program is now being used in states all over the U.S. I contacted the officer who designed the program. He was so kind and shared all of his information, the software and gave me permission to use his program in Johnson County. Finally, when I had the presentation ready, I showed it to my division supervisor. She loved it and asked me to present it to the entire Command Staff! I was SO nervous, but I knew I had to do this if I really wanted it to work. So…..two weeks later, I presented the program to the Sheriff, Undersheriff, Majors and Captains for my entire agency……and held my breath. Immediately after I finished, the Sheriff said that he fully supported the project and that we should work to implement it! Thank you baby Jesus!! LOL
For the next couple of months, we worked on designing our own software and figured out how this program would actually be implemented. On February 10th, I held the first open registration for Johnson County’s Take Me Home program! I was soooooo excited and happy and scared at that first registration. What if we were overwhelmed with applicants? What if nobody showed up? My fears turned out to be unnecessary. We had a total of 33 applicants that first evening. It was so awesome to meet the many kids and adults being registered and to speak with their families. Many of them told me how frightened they were about the potential for wandering. They were grateful for a program that could help a loved one get home fast if they did wander and could not tell an officer their contact information. I met adults with Alzheimer’s, kids and adults with Autism, Down Syndrome and many, many other genetic or cognitive disabilities.

At the end of the night, exhausted and ready to go home and see my kids, my husband (who was also working at registration) said something that really stuck in my mind. He said, “Wow…..we are really lucky….we could have it so much worse…..I’m so grateful for our boys.” And you know what?? He’s right….we do have it good. Many of the people we registered could not speak at all, could not walk, express affection, had lots of medical issues, had such severe stimming that they hurt themselves and their caregivers etc. I might feel sorry for myself sometimes, but I also remember how lucky I am and now I have seen just how bad it could be.

As of right now, we have received over 100 registrations for the Take Me Home program and we continue to receive more almost every day! I talk to many parents who tell me how grateful they are for the program and that it makes them feel more at ease. When I tell them I have two kids on the ASD spectrum, it’s like they are talking to a kindred spirit…..someone who knows where they have been and what they are going through. I feel like I’m making a difference and using my experience to help others…..and that’s good for the soul!