ESY Done The Right Way

With three kids on the Autism Spectrum, we have had our share of experiences with ESY (Extended School Year). Summer is always a precarious time for them since it is filled with transitions and activities that are different from the school year. Every year the ESY is something we have to fight for and argue that without it, they will regress in some way, be it speech, reciprocal language, fine motor or behavior.

We learned what comprises an ESY program is subjective and varies in each school district. In New Jersey, we had some ESY "programs" that were just a self-contained classroom in an empty school. No outdoor time, no typical peers, it was glorified babysitting with OT.   They didn't have a large Autism population and were still trying to figure it out. 

Since we moved to Baltimore, two years ago, we've seen ESY done the right way.  The program blended fun and their needs from their IEP; skills they needed to maintain, therapy, to create  an ESY "summer camp" experience. The program mainstreamed the kids with typical peers, who were mostly siblings of the ESY kids.  Each day for four weeks, the bus picked the kids up and took them to camp.  They were divided into age appropriate "bunks" and did all their activities together. The kids made friends, had and resolved conflicts, and had facilitated and spontaneous interactions.

#1 with his buddy

On the last day of camp, we were invited to attend their end of camp presentations. Some bunks sang songs, and three bunks produced their own videos. When I watched those videos, which the kids made out of pictures and videos edited together with music, I didn't see children with Downs Syndrome, Autism, and other disabilities, I just saw kids. Kids behaving like kids. And, it was emotional.

As a parent of kids with special needs, you worry how your kid will survive in the world. You worry about them making friends and finding their way. You worry about them standing out negatively and being targeted for it. You worry. You just do. But after watching those videos, I worried a bit less. Perhaps it was just because we were allowed to look past the echolalia, the hand flapping, the fact spewing and self-stemming behavior to see them as just kids. Or maybe, it was because I was allowed to see what they could be in an environment that nurtured them and maybe, just maybe,  there was such an environment out there in the big, cruel world. Maybe.

Next year, when the twins turn five, they will get to go to "camp" with the boys as typical peers.  That will be the first time I will have all five kids in a program and have alone time. That will feel weird. When that bus pulls away for the first time, I will be doing the Sound of Music turns on my front lawn. Wait for it, it will hit YouTube for sure. I will be a sensation. Well, maybe not a sensation, but definitely something.

Dear Morning, Suck it.

Today was the day. The day that if I could shove the kids back in my uterus I would have. Not all at the same time, maybe just one or two. I could just sit on them and they'd be sucked back into the vacuum and it would be quiet. The kids were driving me nuts. And today, it was more than the "one crisis at a time." It was an ensemble of issues and side stories all in a 40 minute window, before 8am.

The issues: 
#2 was rattling off his Wikipedia facts of the day, but since he is not able to modulate his voice, it was VERY loud. And the thing is, no matter how many times you tell him, "quiet voice, indoor voice," he fails, simply because he can't. I told him, "Please, speak softer, you are hurting my ears" and my eyes, and all my nerves all together. Please, shut up. You are driving me insane.

#3 had decided to have another go as the Commando Crusader and refused to put on underwear. Plus, his pants were on backwards. He fought us and began his day in "Time-out." Gotta tell you, there is no better sound than hearing your six-year-old screaming "I hate you." And this is just about underwear. Seriously.

#1 didn't want to get out of bed. He was ass-dragging. 

The twins were insane. Someone put crack in their cereal. They were running through the house, antagonizing #2, banging on the piano,  and taking the Mega-Blocks that #2 and #3 had arranged so perfectly, for an angry bird smack down. Together they were painfully loud and I needed them to stay out of the way until the boy's bus took them off to happy land, I mean camp.

And then the fighting began. The twins would antagonize #2, then he would grab them and throw himself on top of them to squish them. Maybe he was trying to give them some sensory input to calm them down.  The girls would then scream and whine. And once the whining starts, my brain hears "WARNING! WARNING! We are going to blow" and Mommy loses her mind.  It makes every cell in my body scream. If there was ever a time that I wished I had listened to my walk-man at high volumes as a a kid, and suffered a hearing loss, it was then. Please Santa, bring me a hearing loss. I promise to be a better parent.

So how did it all get resolved? 

#1 got out of bed and got ready without any problems and we were lucky he didn't get sucked into the vortex. #2 quieted down and focused on his computer. The twins got banished to the play room and although one of them was still screaming, I was able to tune it out. #3 was still without underwear and Husband had to change him. He was still angry, but I took hm by the hand, handed him his Rubix Cube, and walked him outside to the porch. He saw #2 sitting on the porch swing and joined him. It was like the drama never happened. They chatted about Angry Bird Star Wars until the bus came.

And all I had left was two little whiny birds, who were plugged in immediately so I could write this. Now that I'm done, I can climb out of the closet and take off then noise-cancelling head-phones. Maybe, I should wear them in the morning. Now that's a thought.

Language Development: A Tale of Five Kiddies

When the girls come to me and are so chatty, sometimes, I look at them like they are the great enigma. After having three boys with autism, having NT(Neuro-typical) girls seems strange. There are so many behaviors, words, phrases and interactions that I have never experienced before, that sometimes, I just have to stop, look and take it all in. This is what it's supposed to be like. 

#1 was nonverbal until two and a half. He was able to repeat words, but as far as asking for things, he would stand in the kitchen and scream. He wouldn't point, he wouldn't indicate anything, he would just scream. We then had to play the guessing game. I felt like I was a contestant on a game show trying to give the prize winning answer as the clock ticked down. I had to wave every single box of cereal, crackers, and cookies, in front of him and pray for a response. And when that failed, I had to open the refrigerator and do the same dance again. Juice? milk? beer? I'll give you anything, you name it, hash brownies? Just please, stop screaming. My neighbors must have thought I was abusing him .

Eventually, with the help of PECS and some amazing therapists, he made progress. The OT worked on pointing, and it took a very long time before he could point to anything. Slowly, after months and months of language modeling,  he began to say the word of the item he wanted. The first time he said "cracker" I nearly fell off my chair. Yea buddy, you can have the box. After months of success, we had to shift gears and get out of the "I'll-give-you-anything-you-asked-for-because-you-used-your-words." It  worked as an initial incentive, but we had to teach him, that although mommy is spectacular, the universe isn't, and we have to prepare him for disappointment. If I say "no" more than I say "yes", you will realize how special "yes" really is.

#2, the Aspy, said his first word at 18 months, "book", and that child has not stopped talking since. I swear he has dreams about talking at people. His big dream is reading Wikipedia on a stage to the world. Hear my words people.

#3 was also non-verbal until two-and-a-half. He eventually could say "car" and "train" but it seemed like a repeat performance of #1, except, he could point. The problem was, his aim wasn't always accurate. What could you possibly want that is on top of the fridge? I took down everything and showed you and you are still screaming. Do you mean the cabinet next to the fridge? Just shoot me. And to make things even better, he'd throw things in frustration and try to hit. So not only was I trying to model language, and figure out what he wanted, but I had to dodge punches and flying objects as well.

Although he has made great leaps and bounds, he is still selectively verbal. Which means, every now and then, he needs a repeat performance of "what the hell do you want?"

With all three boys, I was constantly modeling language, "Do you want the crackers?", "Yes mom, I want the crackers. Thank you. You're the best mom in the universe. You're very welcome." Most of my days, I felt like I was talking to myself and really, I was. I was modeling full conversation exchanges with myself in hope that they would pick up something, anything. And I was especially careful to never curse in front of them because I knew my luck, the one word they would hear and repeat would be a naughty one.

 The girls were my first experience with reciprocal language with toddlers. I wasn't used to being asked questions that didn't involve asking for food. They wanted to be around me because they wanted to talk to me and that was just so strange. They wanted to play with me and wanted me to read to them. Say what? The two of them often have long, drawn out conversations with each other. Originally it was in their own language but it evolved into English.  And they play with each other and have lots of dialogue between their stuffed animals. The boys never did that.

 Currently they have 27 word sentences without breathing in between. "Hey mom, are you peeing or pooping? I saw a butterfly and she had pretty wings that were yellow, blue with black spots and she was pollinating all the flowers and flying so pretty like this, lalalalala and then she landed on the bench, and then I tried to get her to land on my finger, but she flew away. Are you done yet? Make sure you wash your hands."  I think she just said more words than #1 and #3 did in their first 3 years, combined. 

Not only that, they are aware of facial expressions. "Mom, are you happy? you're not smiling? Mom, show me your happy face."

And now, all the language I have been modeling is coming back to me through them. The first time I heard the twins say, "Thanks mom, you're the best mom in the universe,"I realized someone was listening all along.

Well, thank you. I'll come again. 

Rise of the Commando Crusader

Every kid of mine has some sensory issue. Two don't like the tags in shirts, three don't like pants that button and zipper. And then we have #3 who doesn't like to wear underwear.

We've had several blown-out tantrums regarding underwear. We developed several behavioral plans to address it.  Rewards, praise and incentives work most of the time, but now since he dresses himself, it is harder to run the show. This summer he has been pretty consistent about wearing it, but we still ask almost every day.

This morning, he was wearing #1's shirt which looked like a dress on him. I asked him if he was wearing shorts. He laughed as he picked up the shirt to reveal his shorts underneath. And then I asked him the question, "are you wearing underwear?" He said "yes" but his face said, "I have a bridge in Brooklyn to sell you". I told him to show me, and he refused. Busted, I then walked towards him to grab him and take a look which became a game of "catch me." When I finally did catch him, my suspicions were confirmed, he was once again the Commando Crusader.

Once that news was released, #1 was the reporter getting the story. "why don't you like underwear?""what's wrong with underwear?" But #1 has a hands-on approach to interviewing, and was practically on top of him while asking. A wave of  the future, sensory interviews. I'll sit on top of you, tell me what I want to know, and you'll feel good telling me. Then #2 chimed in, "you need to wear underwear. That is the rule. Mommy, why doesn't he want wear underwear." And with all the questions being asked, #3 wasn't answering. And the longer he refrained from answering, the more they asked, which only agitated #1, and in turn, agitated #2. And, that caused #2  to pull #1 away from #3 while saying rude and hurtful things to him. Think you're confused? Try being in the middle of that.   Once upon a time, when someone didn't wear underpants, it meant a party was imminent. Those days are over. Today, it meant chaos. No party until they all leave. Good morning, Bloody Mary.

So there I was, 7:30 am, waiting for the school bus, #1 couldn't get past his need to know, #2 was annoyed with #1's persistence and #3 was not revealing why underwear was his arch nemesis. I decided to let him go commando since he had underwear at school and if it was a problem, they could change him there. I had a feeling that if I had pushed the issue, he would have melted. Now usually, I am ok with a meltdown, but today, I sensed that if I had pushed it, the meltdown would have been a super-storm. It is hard to predict the rate that he will recover; sometimes it takes five minutes and sometimes all day and being that his bus was due any moment, I chose to not push the issue. Instead, I asked him to brush his teeth and put his shoes on, and he did that without issue.

But, #1 kept asking him and as much as I tried to tell him why, the answer wasn't good enough because it didn't come from the source. A true reporter. Gotta get the facts.

When the school bus arrived, #1 and #2 ran down the driveway to the bus. #3 slowly got off the porch swing and said, "because it makes my butt itchy."  But by then, they were both way out of ear-shot. As he walked to the bus I told him to say that to #1 when he got on the bus. "Nope. I will not." And then he got on the bus and it pulled away. Little shit. I just learned that the Commando Crusader's secret identity is puppet master. Talk about an ODD, attention seeker.

Maybe I need to sew the underwear into the shorts. Hmm, not a bad idea. Let me count the ways over my next drink. The vodka will guide me. 

Unilateral Decisions

We started going to the gym steadily early this year and had signed up three children for the child care. During the week, I took the twins, and on the weekends, #1 or #3 would also join us.  #2 refused to go due to his anxiety of new places, so I didn't push the issue.  #1 liked to go because they had an area for older kids, ages six and up which had computers and video games.  They also had Just Dance 3  which was his favorite video game.  He'd put it on and dance the entire two hours if he didn't have to share or take turns. We owned several of the Just Dance games at home and although all the kids loved them, #1 loved them the most.

And then one weekend, he was allowed to play Just Dance 3 on Saturday, but on Sunday, he wasn't. Apparently somewhere in between the time we were there on Saturday and the the time we went on Sunday, some parent had complained about the appropriateness of the game for younger kids. She said the dances and song lyrics were "inappropriate"  And with that one complaint, the game got pulled. Bet it was a first-time mom...

When they told #1 that the game he loves and was playing there just the day before was inappropriate, he popped a gasket and started to cry. He was confused and angry, even more than I was. When things happen to him that are illogical, he tries to understand them, but can't. "It's inappropriate? Why? You mean it is gone forever? Just Dance 3 is gone forever. I will never see it again. I am so sad. It is gone forever. Why is it gone forever? Did it break? Did someone take it?" I couldn't say anything that would transition him out of that.  He perseverated on it for days. And just when I thought he was over it; he'd be fine and not say anything about it all day,  he would be in his bed at night crying because the game was gone. I tried to explain that we owned the game and he could play it at home, but he wouldn't listen or play the game. He was tainted. The rules at the gym transcended to all walks of life and in his mind, the game was hexed.

I don't know who the mom was, or how old her kid was, but I have watched all my kids play Just Dance 3 and haven't had any issues. I don't think the girls will fall into a life of pole dancing for money in some run-down dive-bar because of their exposure to hip thrusts or retro-hits. Also, how much can you protect your child from pop-culture?  I remember as a kid singing Rod Stewart,"If you want my body and you think I'm sexy." Did I know or care what it meant? Nope,  I just liked the beat No pole-for-profit here. One Direction's song, Live While We're Young, was a top 40 hit and popular with kids of all ages, and has lyrics saying, "Let's go crazy, crazy, crazy 'til we see the sun, I know we only met but let's pretend it's love, And never, never, never stop for anyone, Tonight let's get some and live while we're young. There was no increase of social deviancy since then.  I bet that mom cranks that up in her car while she's driving the protected child around town and thinks nothing of it.  Is she going to get "some"?

I understand in a customer based industry, you try hard to please the clients. The theory is that if one person complains, than there must be more people that feel the same way. But, sometimes, it is only just one overly protective person that has their panties in a bunch. The group as a whole should not have to suffer the repercussions of that unilateral decision. That mom brought her kid to a public child care. There are always going to be toys, kids, rules, movies and games that she may not want her kids to have, but it is public, so you have to compromise.  If you want to control everything in your kid's world, keep them home.

One of the staff in the child room said to me something like, "he can play the game if that person isn't here" I told her that with kids on the spectrum, you can't vacillate in that decision because it is very confusing. And although she was trying to help, I got even angrier. What will I say to him if she's here and he can't play it? You want another melt-down on your hands? You're not thinking?

So now, when I tell #1 that I'm going to the gym, he gets upset but will still go. He asks about the game every time and is still bothered by it. But, he does recover and play other games which is a huge step for him.  Hopefully,  I can use this as a springboard to teach him that things aren't always fair and sometimes people just make bad decisions. And that will be hard. Really hard.

Dear Anal-retentive mom, You are doing a great job at sheltering your child. So great in fact, that other kids are now being restricted because of you. Jeffery Dahmer's mom thought she was doing a great job too. I suggest you take a breath and realize that in the grand scheme of things, a little music and dancing won't hurt anyone. Relax. Your kid will have so many other reasons to be messed-up. And the fun part is, that you'll contribute so much without even realizing it.
"So let's all get some, and live while we're young."

Same Crap, Differnt Location, The Florida trip, part two

Disney, the "ultimate place for everything awesome". That's what the DVD implied, but our first impression was an entirely different story.

We got to the Magic Kingdom, parked the car, sprayed everyone with sunscreen and got on to the trolley. We were lucky to have Eric, our therapist, along for the journey. We got out of the trolley, went to bag check, which took quite a long time and I wondered why they didn't have more people working the tables. People do bring bags in far more often than they don't, but I digress. We went to the ticket booth, showed her the tickets and wondered why she told me to write everyone's names on the tickets, and then handed us our buttons, "My first time at Disney." We then went to the gate to enter the park. I had all the tickets in my hand and was intent on keeping those expensive tickets safe during our transition through the gate. However, that was not the Disney plan.

We approached the gate which was manned by an older, English woman. Definitely someone's pissed off grandma somewhere in the universe. I approached her with the tickets in hand and asked if I could scan them for the kids, but before I could tell her why, she yelled to the air, "each person needs to hold their own tickets." I tried to explain again and she yelled her statement over again. Chaos at the entry point. I attempted to hand the tickets to each of the kids and that is when it turned to shit. #1 threw his, #2 refused to take his and #3 completely melted and started screaming. The girls took their tickets and with assistance, made it through the gate. Before #3 had a chance to hit the English meanie, Eric grabbed him, pushed him through the gate and brought him to a quiet place in the shade. (It was really hot). At that point, another Disney cast member walked up to Eric and #3 and asked, "this is the happiest place on earth, why are you crying?" Then #3 screamed again while trying to hit her. How about I punch you in the face. Would you be happy? Eric replied, "Because this whole process is not Autism friendly. Go away." The verbally wounded cast member departed and we joined them shortly after. But then, we had to deal with #3 who was hitting anyone he could get close to and #1 who was agitated listening to #3 scream and was trying to squeeze him. So, we had to separate #3 and #1 and we had to praise #2 for not getting sucked into the vortex. Meanwhile, the twins were pulling on me to get moving so they could see the castle. It was a scene.

Great, just freaking great. I just spent hundreds of dollars to go to an awesome place and some idiot bitch just wrecked it for my family. When #3 melts, it is unpredictable what the outcome will be. Sometimes he recovers and other times, it takes the whole day for him to regroup. It was hard to determine what he would do, so we let him chill-out with Eric as I went to the guest services desk to get the pass which would allow us to move to the front of the line on the rides. I then told the cast member about our horrific experience at the gate. She advised that I send an email to the website. Great. Just freaking great. You can hear my kid screaming from here and you're not going to do anything? Can I punch you in the face?
 
When I returned with the pass, #3 had calmed down a little bit, so we decided to push it. We had a character lunch scheduled for an hour after we entered the park, so we had to go. We had time for one ride before lunch and armed with the pass, we were able to ride the ride and make it back for lunch. Disney has a special pass for people with disabilities that allows them to move to the front of the line. This pass is essential to success at Disney. If the kids had to wait on line for more than 10 minutes, they would have lost it and it would have been a complete failure. The pass allowed us to avoid the meltdowns and whining, and we were able to have a good time. 

#3 did recover and by the time we went to the character lunch and met Winnie the Pooh and friends, he was fine. Still a little pissy, but fine. The kids had a great time even though we missed some rides because of the rain. The best part was watching the kids dance and react to the Electrical parade. Watching the kids faces as they saw the characters and the princesses,  the Disney promise materialized, "give your kids the memories of a life time." After watching them and hearing them talk about their Disney experience, I believe we did exactly that. 

At least we will have a leg to stand on when they're in therapy. We'll always have Disney.

 

Same shit different location. Part one of the Florida Trip Series.

When I first thought about taking the kids to Disney for our family vacation, I ordered the Disney vacation DVD and watched it. And then I heard the following: "planning for a vacation is almost as relaxing as being on one." Are you fucking kidding me?  Obviously, the person who wrote that script did not have kids or know anyone that did. "Just as good as"? Really? Fucking really?

Stop looking at me! No,YOU stop looking at me!

Disney World is the one trip they can have during their childhood that proves you weren't an absolute failure as a parent. We'll always have Disney. When they are doing their introspection in therapy, years from now, they can always say, "my parents took me to Disney world. I met Winnie the pooh and Tigger too, whoo hoo. They weren't that terrible." That should take some of the sting off.  But I digress. We figured it was a good time to take the kids to Disney. My cousins were in Jacksonville, Grandma was in Clearwater, and the kids all liked the same stuff, so I didn't have to worry about entertaining children with incompatible interests.

The problem was, we were going to have to drive. Seven plane tickets and renting a car was cost prohibitive. It was already going to cost us a lot of money just for the theme park tickets, not even mentioning meals. So I had to plan for the 13 hour trip. Hey Disney, How fucking relaxing is that going to be? I think I hate myself.  Packing for five kids and myself was crazy, but at least I had a system. I had several sets of e-bag travel cubes which come in different sizes and different colors. Each kid had a different color. I could open a bag and easily find the things I was looking for because everything was compartmentalized. #1 didn't wear short sleeve shirts until May, so I had to go digging in the hand-me-downs to find some. Can't have this kid wearing long sleeve shirts in Florida in June.

How was I going to prevent meltdowns, smack-downs, and scream fests during the road-trip? Tell me Disney, since this is so fucking relaxing. Benedryl? Valium? Ebay had some of the answers.

I scored several Nintendo DS games and a DS system on Ebay for very cheap. I also bought a second dual screen DVD player for the car, since the boys wanted to watch Star Wars and the girls were into My Little Pony. I then went to Five Below and bought them all headphones. That purchase alone, made the ride blissful at times. When the only sound is silence, and the kids are around and not sleeping, it is such a rare and special moment that you can almost hear the angels singing. Redrum. I bought some "Magic Pen" books and assembled goodie bags for each kid. I also made a stash of new things I could give them to avoid meltdowns and stuff for the way back. I was the prep-diva.

While I was packing the van, I noticed a cellophane wrapped bottle. My friend Adrienne left me a birthday present on the dashboard; a bottle of vodka and a 24 ounce cup. Score! She is the best person in the universe. At the very sight of that bottle, I was thanking all the gods that wanted to take credit. If there was ever a sign that said "Jesus, loves you", it was that bottle, on my car, on that day. Jesus for Jews. I'm on that.

We took off and planned a stop every three to four hours, so the kids wouldn't lose their minds. Later, I realized, I was the one who needed the break since I would get really stiff and my sciatica would flare up. We planned to stop over one night, eight hours into the trip. I packed one bag with all of our stuff for that night so we didn't have to sift through the van looking for stuff. It was quick and easy; one bag in, one bag out.

I  also packed a bag with extra clothes for the car. Which contained clothes just in case someone had an accident, car sickness, or made a mess. #2 and Twin S had a history of car sickness, so we were ready. In addition to my car-ready stash of video games, movies and clothes, I also had a package of baby wipes, handi-wipes, plastics diaper baggies and food.

Just imagine trying to pack food for the locusts. When they are at home, they are non-stop eating machines.  Now imagine them confined to a car with little to distract them. I knew that by the end of the trip the van would be absolutely trashed.#2 is allergic to wheat, eggs and dairy, so we had to pack-up his special foods for the drive and the entire trip. We also had to pack up the cereal that the girls MUST have every morning. At the end of packing, our car looked like we had just robbed Trader Joe's.

So how'd it turn out? #1 was car-sick the entire first leg of the journey. The poor kid was a puke-hound until we stopped in South Carolina for the night. Where's the Febreeze? I was really glad I packed extra clothes for him since we had to change him completely at our first stop. When we finally made it to Jacksonville on the second day, we got to take a nice break at my cousin's house. The kids got to swim in their pool, eat a nice meal, and bond with their cousins. We then did the last leg of the trip to Clearwater Beach to see Grandma for a few days before we headed to Disney. 

Was it terrible? Nah. It was fine. We had our share of crankiness and issues, not just from me, but the good outweighed the bad and the vodka bottle remained intact, both inside and outside.