An autism Halloween

I love October. It's one of those rare times in Florida that the air actually starts to change. The light breeze goes from 95 degrees to 80. Ok, it's not much but I will take it. (gentle reminder that South Floridians break out the parkas at the mere mention of the weather dropping to 75. True story)

Along with that breeze though, comes Halloween. Now while I love any excuse to shop and dress up, the reality is that for most kids with autism "love" is not a word they would use to go with the word "Halloween". (if they are even verbal that is).  Kai is 9 but still does not get the full concept. I guess that he does perhaps know that once in a while mommy goes nuts and makes him wear weird clothing and nags over photographing him in it. I usually start mentioning it a week ahead of time. I show him his costume and even draw up a social story for him in the hope something clicks.

This year Kai (9) was Batman. Quinn (2) was Robin.  Kai has been a Hershey's Kiss, Superman, army soldier, clown, incredibles, fireman, soccer player, and Peter Pan. Quinn is still too little to protest it. Most of those costumes listed have no hats or masks and if they did, they were worn for a split second as I snapped a photo and were never to be seen again. He must think I am nuts. I mean, why can't he wear his tee and shorts like every day? Why can't he just be? What fun is it to wear itchy weird clothing? I guess I can see his point. My rule of thumb for holidays is this: as long as I get ONE photo, the rest can go awry and I won't care. At least, I try to stick to that.

I got the one photo!

 The other BIG issue? candy. He does not eat candy. Does not care for it. He has been on a gluten/casein/yeast/soy/peanut free diet since he turned 3. Although some candy falls into those categories, we just don't give him any. It's annoying to me that our standards are so low for our kids diets. By "our" I mean, society in general. Peek into any kids school on a holiday party and you will find 3 puffed Cheetos, a cupcake, and a handful of chips on their plates accompanied by some juice. That's all they eat for lunch.  I wonder why they could not concentrate in class or were hyperactive? That's how they spend the day until they get home and "hopefully" eat a well balanced meal. Insert eye roll here when I say "hopefully" because I would dare say, it mostly does not happen. Need to point out that this goes for all kids: autism or not. If it was only truly just on holidays but it happens more often than not without the holiday excuse. Not saying that had Kai not had autism he would not eat that once in a while but I would make sure it would be only following a nutritious lunch. Is that so hard to do? But I digress... (I predict a new gfcf diet blog post coming soon)

As it turns out, this year Kai was successful in repeatedly donning his Batman for not one, not two but three  Halloween parties! That was huge. Did I mention the Batman costume has a mask? I even think it was the first time he understood that going to a "Halloween party" entailed "conditions" (costumes).  When his teacher sent a note home asking for "special" items to be sent to school on Halloween such as : candy, pastries, chips, juice, etc. I sent a note back saying "no thanks" and that was the end of that dilemma. I still cannot comprehend how they want to feed sweets to a classroom of kids with autism whose behavior will most likely deteriorate immediately afterwards. Kills me. 

 Halloween night we briefly attempted to go to a friend's house. It was a little rowdy for our taste. Kai was all over the place. Quinn (who is not walking yet) was just crawling all over the place with his little hands picking up all the dirt from under people's shoes and then putting his hand in his mouth. Did I mention I am neurotic about limiting the baby's germ exposure? I guess I should do another blog post on that too. I swear I am pretty normal otherwise. ha!

We hit a big wall when we attempted to trick or treat. Here is Kai, being prompted to trick or treat for something he does not understand (since he does not know or eat candy). Why do we even make him do it? So he can "fit in"? So that we have a sense of "normal"? After he attempted to enter a couple of strangers houses looking for what I can only guess is the location of their computer, I called it a night. Here were these poor people offering Kai candy and all he did was push through them and stretch his neck hoping to find a computer or something to play with. Oy! never again. 

Next year I think we will have the boys dress at home and participate in giving the candy to the trick or treaters that come to our house instead. It's more fitting of our lifestyle. We don't do candy but you do and we want to celebrate with the world so here,take it all and enjoy! This way they will also get to interact without the confusion of asking for something they don't eat. Makes much more sense and I think I have finally made some peace with it. Bring on Halloween 2012.

And now time to tackle an autism Christmas. 

It never ends does it?

How was your Halloween?

From wine to whine...

The hubby and I took a much needed break this last month and visited some Napa Valley wineries. Heaven. Wine has been our obsession recently. I think we have a found a way to deal with autism and developmental delays as a couple. No, not by drinking our sorrows (well, maybe a little). It is more of a shared hobby, an enjoyable one at that. We love learning all about the red wine, where it comes from, how it's harvested, etc. 

We secured babysitting and away we went. 4 days full of wine-ing and dining. We slept in on occassion too! What a concept. We are strong believers (now) that we must carve out time as a couple and individuals so that we can be better parents. Tired parents are less patient and not as clear headed.On the last night we  took the red eye from San Fran. Flight left at midnight west coast time and arrived at 8am east coast time. My husband jumped right into work and I jumped into therapies, diapers, and the OTHER type of WHINING. The days of the right kind of wine-ing were forgotten within 15 minutes of setting foot inside the house.

We dove into our usual Tuesday slavedom that is Quinn's new program. 4 hours of a "mommy and me meets preschool type of class where the moms follow the kids around and do exciting things like table tasks and sensory stations. Kill me now. As a second timer (did plenty of rounds with Kai, now 9) this time around with Quinn (28ms) is just annoying. I wish I was taking him to the zoo, the seaquarium, the park or just on typical playdates. Instead, every morning is filled with a different therapy. The joy. Speech therapy back to back with physical therapy back to back with ABA therapy and on the other days? the preschool classes. I also have to listen to all the mothers, myself included, pronounce all the words with sing song entonation, give cheerful compliments (for 4 hours) and listen to the kids that have had it and scream the entire time. I know it's part of the process. I know those moms rather be elsewhere as well. Finding the energy to carry on as enthusiastic as the first timers is hard though. It helps that I have days of wine-ing to look forward to.

We are still 6 months away from his Quinn's 3rd birthday.  Most importantly, we are still under the glaring possibility of an autism diagnosis which will make this the 2nd round for us. Not saying that will happen but we are still under that "window". Until that window closes and we have a green light of no autism, my stress level will be considerably high. We are working hard towards escaping that autism diagnosis. We are doing everything in our power but there are days, like today, that I feel like it's not enough. This is where my whining comes in. Who am I kidding, I was talking about me the entire time I mentioned whining, not the kids.

I am whining about it yes. Things could be worse but they can also be so much better. I can fill in the blank with a lot of "at least's" Yes, at least I have this and that yadda yadda. Thing is, nothing matters unless you and your family have health. Plan and simple. Health is the single most important factor in our lives. With health you can do anything. Who cares if we can go to Napa if we would trade it in a heart beat for our children to have a typical childhood. Shoot, they don't even have to be really smart. Just typical. We will take it.  Even C students! Detention? great!

Until then, I am grateful we do our getaways and adult nights. Without them we would only be enveloped in a sea of depression, surrounded by pecs schedules, evaluation appointments, doctor's visits, and well meaning ABC singing mothers at therapy sessions.

It's Monday but I am already counting down to the weekend when we can relax and have more whine over wine time. It's what keeps us going.

Cheers!

The Happy Camper

Spring! well, it isn't spring anymore but we live in South Florida and it's always HOT! (translation for: I started writing this months ago but just finished it now)

What better way to celebrate than to enroll our Nemo into swimming lessons?

That's what we did several months ago.These were not your typical ones either. These were for kids on the spectrum who already knew how to swim. They were to be taught the proper techniques for strokes so that they could swim laps: forwards and back. Hey, I wonder if they have classes for parents too? I sure need them! Ok, sorry, back to my story.

I enrolled Kai and spoke to the camp director. I was excited and made sure Kai knew exactly where we were going and why. He seemed excited as well. Not sure he got what was to be taught but if it involved water, he was game.

Class was supposed to begin at 3:15. Naturally, arriving at 3:00pm was not a good idea. He was very anxious and the waiting was really hard on him. At 3:10pm they decided to begin since the kids were stimming by the minute. There were about 10 kids and 5 instructors. 

And so the problems began right away. One of the lifeguards in the water, we will call her Maggy, was instructed to stay with Kai until it was "his turn". The instructors then took turns with the kids doing their thing. There was a little girl we will call Lilly. "Lilly, what a great job you are doing!" said the head instructor. She had been in the water 2 minutes and was showing off her glorious learned strokes already. "Way to go Lilly" called out another instructor from afar. Gee, I sure hope my Kai learns all of that at camp. So awesome!

Kai was not really being taught so he would go to the edge of the pool and jump in. In his world, this was awesome! woohoo! He gets to splash and play, what's not to like? Well, if you ask the screamingcamp director, lots. "Kai, no jumping in!" "I said, NO jumping!". What is happening here? I thought. No one told him not to jump in initially and screaming accross the pool will not register with him. Have these people taught autism kids before? How about going to him, looking him in the eye and telling him firmly what the rules are. "Lilly, that was awesome!" screamed another instructor. Then there was Nico. Nico had been having a "turn" and then asked to sit nicely while the other kids, not Kai, but the other kids had a turn. "Wow, Nico, you are doing such a great job, let's go back in again". Meanwhile, Maggy now had a soft hold on Kai so that he would not run off and jump in the pool. 3:23 rolls by, 23 minutes later, and Kai was STILL being held in the corner by Maggy and not one person had come to get him to "teach" him. He was actually being quite patient considering he was in the same spot with one person in the water doing absolutely nothing. This was just the first class.

Walked up to the main lifeguard, Lola, as she screamed at Kai who had managed to break free and was happily running into the pool via their beach entry. "No running!". Kai's "running" was more of a feet flat, shuffling into the water than it was "running".

"Listen", I said, "if you need him to not run or jump in you are going to have to pull him aside in the water and explain it to him. It might take several times before he gets it. Screaming at him from far away will not do a single thing. He has no idea it's directed at him. Also, he has not been active since class started" . "Great job Lilly!" called out yet another instructor from far away.  Also, Lilly, Nico and most of the other kids have gone out several times and no one has come to get Kai yet. "The reason he is off and doing his own thing is because there is nothing else for him to do! if someone was working with him he would not have been able to run off."  "Ok" she replied." I will tell them something". Lola walks up to the head instructor and with her back to me repeats what I said. The instructor gets a look of " oh no she didn't"  and says to her "well, that's not how it works around here". Repeat to thyself, patience, patience, patience.

Was this really happening? This is how it was mostly for 6 weeks. There were maybe 2 classes when he got a fair shot at swimming and instruction just like the other kids. That's it. Since this was a trial for me anyway and I had already paid (I thought it was non refundable), I took it as a free play activity for my son and I figured I was going to just go and let it go. There were other incidences. The one that always upset me the most was just how much time alone he spent or getting screamed at for doing his own thing when not being "taught". I don't think it's rocket science. You either have the child with you to teach or you don't. When they had him, he did great and I have that on video. When they did not he would play on the beach entry or want to jump in (as he does at home and all the other schools and field trips he has attended). I also have that on video. He already knew  how to swim and this class was supposed to define those skills but it never did. 

At one point the camp was short staffed and the director was on her cell phone on the lifeguard stand. My son was all alone by the entrance. It was a joke. On another instance the director's grandson was in the water with our kids and he was having "turns" too which took away from our kids. The day of the last class I discussed some of these concerns with another parent who agreed with some of it and had been oblivious to others. "Lilly's " mother overheard and "tattletaled" 4th grade style to the director. I sat there in disbelief of what was going on.Now I could be wrong, but I saw her walk backwards unto my conversation with the other parent to get within earshot and then watched her hightail it to the director who was not happy. I don't care that she overheard because it's something I had already mentioned to them as a concern and something I would (and did) say to their face.  " I tell you, that woman, from the first day..." is the most I lip read. Any chance this was not about me? Maybe. Or maybe not.

I have been a dance instructor all of my life. I have taught small, typical kids. I know all about being fair and making sure each child is paid attention to and taught. This was NOT the way things were being run at this camp amongst other issues. I also know that there are days when you or your staff can be off but if it's the majority of the time then there is a problem.

When the 6 weeks were up, my son had learned NOTHING. I left and quietly decided to just let it go as another one of those" live and learn" autism experiences where a therapist or school is not as qualified to teach our kids.  That was until a parent asked about this company on a Yahoo group I belong to. I did not hesitate to write about my story to this parent and the other group members. I made sure to say that perhaps if you paid for a one to one their experience could be different. I did praise the instructor that did work with him for those precious 5-10 minutes of instruction in the 45 minute class span. This is a parent group where parents share their experiences on autism related things such as therapies, therapy centers, teachers, therapists, community events, shadows, etc..Another parent who attended the same camp forwarded the info to the camp owner. I wonder who? Hmmmmm.

Thing is, I had been upset all summer and I tried to keep a lid on it in an attempt to just deal with it patiently and give them more time to get it right or just finish the camp. But, now someone wanted an opinion. I have a right to give my opinion of a business. I was not a happy "camper". Pun fully intended. That is why there are places like Yelp!, Google search and Trip Advisor. People are free to express how their experiences were at any business and so I gave my thoughts on it.

The owner wrote me what I guess she thought was an intimidating later or a cease and decease type of thing. Ha! Really? Sorry you weren't happy so now shut up about it? Not in a million years. I am not going to go out of my way to tell the world my experience but if someone asks, I will. Did I mention my husband is an attorney? I know I was doing nothing wrong by sharing my experience. My son is 9. Can you imagine how much therapy and classes he has taken over the years? Not all has been perfect every time. With that said, need I state that every single teacher or therapist has always loved him to death for being such a great little boy AND student? This was the first time he had been ignored or scolded so much for no good reason. She was so blindly upset that a lot of points in her letter had nothing to do with what I wrote. I wish she would have just said something along the lines of "I apologize for your experience. I don't remember things happening that way. I wish we could have talked about this some more so that I could have made your experience at our camp a pleasurable one." THAT would have been a nice way of telling me off! (since she is also entitled to her opinion...lol) I thought long and hard how to respond or if to just let it be. I responded briefly and just went over a couple of the points and how I disagreed. I kept it short and to the point. I knew it would probably fall on deaf ears (or eyes) but I just had to reply. Such a sad situation for all involved.

I don't like anything about autism. There are some things though that in cases like these are a blessing. The only happy camper in this situation was my son. He had/has no idea that the camp was supposed to be different. If I took him to that pool today, he would be ecstatic and be anxious to do the same thing all over again. For that, I am so happy. At the end of the day, HE is all that matters. 


In an interesting turn of events, I enrolled Kai in an amazing summer camp weeks after that incident. This was a camp full of activities and one of the perks? he got to swim each day with the counselors. By the end of camp, my son was swimming properly, forwards, backwards and even under water. To that I say BOOYAH! See what happens when you " teach"? Amazing isn't it? What a concept.