Partying with the Dinosaurs

The first time I had to explain death to my kids was a couple years ago when my uncle died. Two weeks prior, I flew to Jacksonville to visit him and say "goodbye". He had cancer and his days were numbered. I got to spend time with him and had a great visit. Two weeks later,  I had to return to Jacksonville for his funeral. All the children knew I was leaving, but #2 was the only one who inquired why. "Uncle Bernie died", I told him. He looked puzzled and said, "You mean he's extinct? Just like the dinosaurs? And after the next ice age, he'll come back with the dinosaurs?" Well, that is a really great way to look at things, right? "Yea, he'll come back after the next ice age." I assured him.

A year later, our cat, Mimi, that we got right after our Honeymoon, died. She was 17. The girls were three, so they understood that Mimi had died, which in their minds meant Mimi wasn't there anymore. In Mimi's final days, we told the kids to say "goodbye", because we knew it was just a matter of time. And when she died, #2 said, "she's going to come back with Uncle Bernie and the Dinosaurs." But, he was a little mad at us because we had buried her before he could see her.  #1 was a little more melodramatic, "you mean she's gone forever?" I tried to reassure him, "Well, yes. But, she'll come back after the next ice age".  That didn't work on him. He got agitated and cried, "she's gone forever. AHHHHHH" and off he went.

Over the next year, whenever the twins were asked if they had pets, they'd explain, "we had three cats, but Mimi died and now we have two." Wow, they got that.

And this week, we said "goodbye" to another cat. Ellie the cat was 15 years old. She had a massive tumor in her sinus and the vet explained that at some point, it would grow large enough to suffocate her. She was only five then. She managed to live an entire decade out of one sinus. I noticed her breathing was getting labored the day before and sat with her because her time was coming. The next day, #3 went to check on the cats. He returned and told us that she wasn't moving. She was deaf and would only move when touched.  He told us that he touched her and she didn't move. I went to check with him and told him that she died. He asked me, "mom, what is dead?" I told him, "Dead means you get buried in the ground. There is no fun dead. There are no cookies in dead. There are no movies or TV in dead. You stay in the hole in the ground."  He was sad, but in five minutes he was fine again.

We told #2 and the twins that Ellie had died and brought them downstairs to say "goodbye".The twins at first said,"let's save her," but then I told them, "you can't, dead is dead." They said their goodbyes and moved on with the day. I asked #2 if he was glad that I let him see her, and he responded, "Thanks, Mama, I needed to see that. Now is she going to come back with Uncle Bernie, Grandpa Mike, Mimi and the Dinosaurs after the next ice age?" Yes buddy, but by then, we'll all be coming back together.

With kids, life and death are black and white. One day you're there and one day you're not. In their minds, things go on and they are sorry you're not a part of it. It's not until we get a bit older that we're tuned into the ramifications of death; The "I won't get to see them anymore" or, "who will I play with when I wake up?" That happens much later.

 I remember talking to them about life cycles, after we saw a dying fox on the side of the road that was hit by a car.  "All things live and all things die. Each species has an average life span, but each individual is different. Some grow to live long lives and some die younger. The length of time something lives is called a life cycle. When something gets to live it's entire life cycle, then they are lucky."

Brain-pop has a video about death. #2 watched it and then asked me questions. He pointed to the tombstone on the screen with "R.I.P" written on it and asked, "Mom, are you going to put a tombstone on Mimi and Ellie's grave?" I replied that a plant was good enough for animals. A whole bunch of compost for that plant. It's a win-win. I then asked him if he knew what R.I.P meant. "Death" he replied with absolute certainty. Well, yes. It does mean death occurred here. I told him It meant, Rest in Peace. "Oh. Rest in peace. I got it. Until the next ice age."


That's right. Until the next ice age. It'll be a big party with the dinosaurs.

Aspies Gone Wild

When my long-time friend found herself in a pickle, her nanny was on vacation for a week and  she
needed child care for her 12 year old Aspy, I offered to help. "Send him here", I told her. "What's one more?" 
A lot actually.

I already knew many of his issues through the many conversations I had with his mom. And since I have an Aspy myself, I knew that anxiety, impulsiveness, and attention seeking behavior often piggyback with ASD.   Aspies are very bright, and very complex, and adding puberty into the mix, makes every day alcohol appreciation day.

When I talked to him on the phone before he came, I asked him what he liked to eat and if he didn't eat certain foods. He responded, "I pretty much eat everything." From the moment he entered the house, the list of food he wouldn't eat got longer and longer until the list just had bagels, cereal, yogurt, ice cream, and pizza. He was even picker than #1 who insists on eating pasta with sauce and cheese every day. Every food had something "wrong" with it.  My friend told me that he didn't like eating in front of people and that he often snuck food in the middle of the night. "it's like he can't control himself. He seems to have no memory of it when asked about it." We went through the cupboards and put away all food that we thought would trigger impulsive eating. We missed a few things.

We found random snack rappers under his bed and a few cups next to his bed. They had a black ring on the bottom and smelled like soy sauce. We then asked him what it was. "I don't know and I didn't put it there", he replied. Oooh the lying, can't stand the lying. I told him, "you do know what it is and you put it there yourself three times. Tell me what it is." After several attempts and promising him that he wouldn't be yelled at, he did nod his head when asked, "is it soy sauce." But to extract that answer was so draining and there was really no reason for it.

We decided that the best way to keep conflict to a minimum was to keep them occupied. Everyday had an activity and some days there were several different things planned. But there was still enough down time for antagonistic behavior to surface.

One of his talents was that he systematically tried to figure out what everyone's triggers were and push them.

He was really good with the twins, that is until he pushed them harder than he thought he did and they toppled over.  It's an easy thing to do if you're 12 years old,  5'10" and 180 lbs; you have a wee bit more power than you think you do. After a few days of him being kind and then taking their toys away, they didn't trust him as readily. They wanted to be around him, but inevitably they would wind up screaming about something either X did to them or something they did to him. Eventually, he got used to their fickleness and they all became good buddies. He got lots of good praise for that.

#3 had a lot of fun with him. He'd play chase games or tickle games which  would get #3 really wound up. But then, all of a sudden, he didn't want to play anymore and didn't offer any type of transition out of it. So, #3 keep playing and then X would get upset that #3 was bothering him.

X and #2 would have the "Well Actually" wars. They would throw random facts at each other claiming to be the smarter one and when either one of them didn't know as much as the other on a particular topic, #2 would make stuff up and X would insist that he was wrong. From there it went down hill quickly. #2 would get frustrated with X and then X would put his hands on him. Game over. By mid-week we had to keep them separated because X knew how to push #2's buttons so well that he'd melt every time, and X would throw his hands in the air and say, "I didn't do anything." That combination alone was vodka worthy.

The one thing they did have in common was how they treated #1. Since they both had trouble interacting with him the way they wanted to, they both usually wound up putting their hands on him in some sensory fashion; squeezing, pushing or holding. And when they'd get frustrated with him, they'd boss him around to the point that #1 would get upset and go to his room.

We did spend most of the week modeling language for everyone. We had to prep X to deal with so many kids. "I need a break, I'll play later." And, "I don't like that. Stop please." In some ways, it felt weird modeling language for X , but I had to remember that although he was very articulate, and very smart, a core ASD deficit is not being able to express feelings effectively.  Four-year-olds aren't very good at that either. By the end of the week, everyone was expressing themselves much better. And the Bailey's bottle was only half-empty.

It did seem like his best moments were when he played nicely with #3 and the girls and when he was the only kid around and he had all the adult attention to himself. And when he was one on one with an adult, he demanded constant interaction. Whether it was fact sharing, silliness, or just making sounds.

In the end, the kids were sad when X was leaving, and #1 asked him when he was coming back.  We were able to help my dear friend in a moment of crisis and give X a different perspective and appreciation for his one sibling. Maybe being in our house for a week made him appreciate having just one sister to avoid.As they say at Dunkin Donuts, "Thank you, come again."

Hanging on the porch swing

Peach Picking

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."