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Posts Tagged ‘ASD’

Want To Find Out What Your Special Needs Child Is Thinking? Here’s Your Chance!!

I have lost count of the times I have thought to myself (or said aloud) “What are you thinking about?” or “What were you thinking?” or “What are you doing?!” or “Whywhywhywhywhy?” about something James has said or done (or not done). I have also blogged about the matter-of-fact, often firm-borderline-strict approach we have taken regarding behavior we consider to be disruptive, harmful or beyond unusual.

But oh, what I would give to know what is behind some of the behaviors, some of the strange things James says to other people, some of the things that upset James that we consider just plain crazy. If only he was able to explain to us the “why,” I feel like I could be a more patient, compassionate, empathetic mother and human being.

So I am beyond excited about the prospect that Lydia Wayman could be speaking at one of our meetings this Spring. Please help me make this incredible, unique event possible by purchasing tickets early and passing this information along to anyone who might be interested.

This could be a life changing experience for anyone who knows and cares about someone with ASDs, PDD, OCD, and Sensory Processing Disorders – what better perspective to gain than an insider perspective?

Pieces of Me: A Life on the Spectrum
Author and blogger Lydia Wayman will give a presentation based on her writings, including new book Living in Technicolor: An autistic’s thoughts on raising a child with autism.  She will bring you into the world of autism so that you can better help your child.  Lydia will take questions following the presentation.
Lydia Wayman is a 23-year-old author, speaker, blogger, and advocate from Pittsburgh, PA.  She also has autism.  When she’s not writing, Lydia enjoys reading, sewing and knitting, swimming, and above all, her mom and her cat.
Some sneak peeks at what Lydia has to say:
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This event is conditional on raising enough money to pay for the event. That’s where you come in. Regular tickets are $15, though discount tickets are available (enter any amount that is affordable to you). Please consider making a donation to help fund the cost of this presentation – there are some serious perks that come with a Premier or VIP ticket! All ticket proceeds go directly toward the cost of the event and Lydia’s travel expenses.

Click here for more details and to reserve tickets!

New Special Education Group In Brooklyn

Click here to check out a new meetup group in Brooklyn for special education professionals. The purpose of the group is to network, exchange ideas, and build knowledge about what techniques work with persons who have autism and multiple disabilities.

A Voice For Neli

**Some of the articles (especially the first link) referred to in this post contain expletives and racial slurs, particularly the N word. Though I am uncomfortable with the language, I feel the issue is important and the articles are necessary to explore the entire story.**

I was working on another post this evening when I stumbled across an article about Reginald Latson, the autistic teen who was arrested for allegedly assaulting a police officer. After that it was increasingly hard for me to concentrate on my light-hearted banter while this story gnawed away at me. So now I am off on one of my many tangents, but without the usual witty comments and jokes.

The articles I have been reading send a little thrill of horror through me. I want to stop reading them but, not unlike a car accident, I am sitting here gawking at the wreckage. There are thousands of links if you google ‘Reginald Latson’ or ‘Neli Latson,’ each one more disturbing than the last.

James is rarely, if ever, out of our sight with the exception of school, and even there he has a 1:1 para to help him throughout the day. But I think there will come a day when he is old enough to be out on his own, and it is my worst nightmare for something like this to happen to him.

Obviously I don’t know all of the facts nor do I know Neli Latson, but I do have an especially educated imagination in this case. I can imagine any police officer approaching James without realizing he is disabled. I can also envision a police officer giving James an order or speaking sternly to him and James getting really worked up over it – if they frisked him for a gun he would be terrified. God forbid if they ever, ever tried to put him in cuffs or put him in a police car. I have tried to restrain James in recent months over things like laying still for the dentist, getting blood drawn and having his blood pressure taken, the key word being tried. It is a simple fact that the older and bigger he gets the harder it is getting. James might be weaker than a typical 10 year old on an average day, but he is still big and can be surprisingly strong when he is in a panic.

Below are the links to several other articles I read, including Lisa’s website and petition for her son.

Here is the original article, which is a completely different story than the link above.

This is one of the less colorful post-sentencing articles I read through, though I encourage you to google a few more – the language and tone in each article can be astoundingly different. It looks as though he was kept in isolation for 8 months of the last year awaiting trial, and was sentenced to 10 1/2 years for assaulting a police officer. The sentence was recently reduced to 2 years, which is part of the reason it is back in the headlines.

Click here to go to the petition site that his mother, Lisa Alexander, has created in the hopes of breaking the story to national media. She also created a website with more information, avoiceforneli.com

My heart goes out to Neli’s mother, Lisa Alexander, and her family. I’m trying to empathize with her situation without thinking too deeply about James, because it is just too gut-wrenching of a subject for me to make personal. Do your own reading and come to your own conclusions. I’m not here to act like I know what happened, but I’ll probably be up tonight thinking about it.

A Special Day For Special Kids at West Hills Day Camp on July 30, 2011

As summer approaches I have spent more and more time looking for fun activities and events near NYC for James, and last night I stumbled across this one – it looks promising.

Below is a description of the event as well as a map of the grounds, taken from the site http://www.specialdayforspecialkids.com:

The 7th Annual Special Day for Special Kids (SD4SK), being held on Saturday July 30, 2011 at West Hills Day Camp, is excited to bring you a Summer Festival like no other. SD4SK is dedicated to children with special needs, a place where children of all ages, with autism spectrum disorder, Asperger syndrome, Tourette’s syndrome, ADHD, OCD, and other related neurobiological disorders, can feel comfortable enough to let go and just have fun in a safe environment. While these Special Kids are enjoying the many activities being offered, we will be bringing information and resources to parents and professionals in the field. Years prior, we have welcomed over 500 patrons to this event, and this year, we expect even more. 

SWIMMING – BASKETBALL – ARTS AND CRAFTS – GIANT SLIDE – CASTLE BOUNCE – MINIATURE GOLF – PADDLE BOATS – EURO BUNGEE – PLAYGROUNDS – AND MUCH MORE!!!

The site has many more details about the big day including a list of expert presentations – some of the experts will speak about life care planning, ABA therapy, motor speech disorders, due process rights at school and government benefits.  The stage schedule varies from reptile shows to dance performances. Ticket prices are very reasonable, and even less $$ if you buy them online.

The weekend is over? What? Nononononononono!

The reaction seems ridiculous, doesn’t it? The weekend came to an end, just the same as last time. There will be another weekend someday soon, and if I play my cards right it might be even better than the last one.

Okay, now go back and plug in “computer time” or “Wii time” or “Sleep time” or “couch time” in place of the weekend, and also take me out of the equation and plug James in. Then add a shocked expression when the time ran out, a lot of loud pleading then yelling when he realizes there is really no more time, a bunch of stomping that sometimes results in James falling, 5 minutes of timeout and a cherry on top.

Here is a very specific instance that we go through at least  once a week:

6:45AM

Me: “James, you have 5 minutes and then it is time to get dressed.”  James: “Okay.”

6:55AM

Me: “James, just one more minute and it is time to get up.” James: “Okay, just one more minute.”

7:01AM

Me: “James, time to get up. Please go to the bathroom.” James: “One more minute.” Me: “No, it is really time to get up now. Please get up and go to the bathroom.” James: “No. I don’t want to.”

At this point, James usually pulls the covers over his head. I walk over and pull the covers off at which point we have a short tug-of-war. I win, to which James responds “Nonononononono” at an incredible volume considering he is so tired. I pull James up out of bed and direct him to the bathroom, the entire time James complaining loudly, “Ow, you’re hurting me” or “No, I’m too tired” or my personal favorite “It’s too hard to listen to you!”  Every time James screams or refuses to take the next step, standing up, going to the bathroom, putting his underwear on, he gets a “strike.” Three strikes and he loses a privilege like playing Wii, watching TV, etc. The punishment sometimes puts an end to the situation, but about half the time results in more volume and more protests. To add to the event the noise often wakes my husband or the baby, neither who are pleased to be woken in this way.

The second example happens at least 3-4 times per week, and usually occurs when we want James to stop doing something – reading, playing video games, watching TV, but can also occur when we want him to start something – take a shower, get dressed, go to the bathroom. James needs a lot of prep leading up to the starts and ends of activities. A LOT. The 5 minute warning equals 10 real-time minutes, the 3 minute warning equals about 5 more and the infamous 1 minute warning equals about 5 more. After every warning, “5 minutes to shower time,” “1 minute until you turn off the computer,” “when you crash, Mario is turned off” James responds sweetly, “Okay, Mom.”

Then I say, “Okay, buddy, time to __________.” James responds, “Almost time?” to which I always say, “No, it’s time now,” to which James replies, “What??!!” And the battle resumes.

Because James is already awake these battles are often less dramatic than the morning routine, though not always. And if you try to get him to do something or stop something with no warnings? I’m sure I am not the only parent of a child on the spectrum that is cringing right now.

Many of you who know or have met James realize that he is not like this most of the time. Some of you probably even think I am exaggerating the above scenarios. Yet many parents who have a special needs child, especially one with a Autism spectrum disorder, know that the Jeckyll/Hyde scenario I am talking about is perfectly possible, even with the sweetest, most well-intentioned child. Each episode beginning to end usually lasts 5-15 minutes, certainly not a long time, but as we all know time can be relative.  After James has thrown this small tantrum or incredible fit and has been punished by losing a privilege or a timeout, he is usually over it. He is no longer “in trouble” and returns to his cheerful self. But the aftershocks – loss of activities for James later in the day, younger children having witnessed or been woken by this behavior, stressed out husband who doesn’t “turn on and off” the way James does. Aftershocks can sometimes do as much damage as the quake itself, even if they just seem like small rumbles at first.

I will be the first to say that in many ways James is a very easy child, and 95% of the time he is pleasant, well-behaved, sweet and happy. But this “scheduling breakdown” was in need of a more permanent repair, so I decided to document my latest attempt, inspired by my husband’s need for peaceful mornings and Nancy Trush.

James sleeps with a lamp on in his room and reads himself to sleep after being tucked in – my husband is a firm believer in sleeping with the lights off, and felt that James was waking up tired because the light was too bright all night. James is not a fan of the dark, so as a compromise I bought a really neat gadget on Amazon, an attachable dimmer that works on any light or lamp in the house. The first night I dimmed his lamp prior to turning it on so that James wouldn’t be able to protest – after all, the lamp itself looks the same. He definitely stared at it suspiciously for a few minutes when I turned on the much softer light and asked that it be moved closer to him, but didn’t seem to know what else to say. 5 days later the dimmer is going strong and James is falling asleep earlier. This past week only 2 days were unpleasant in the morning. Coincidence? Maybe – so I decided to take no chances and pursue the next step of the plan.

As a preschool teacher Nancy has offered me a lot of insight into what works for her 3 and 4 year olds, which is around where James is mentally. For this particular issue she suggested a timer or alarm clock. Genius, I thought! Blame it on the clock, not on the person. But my very next thought was, James will never go for anything that makes sudden noises – especially alarm noises. So, James and I spent some time online looking at cool alarm clocks as a special present – http://www.trendhunter.com/slideshow/fun-alarm-clocks. My husband and I spent some time meanly laughing at the ones that would wake James up the best and probably cause him to remain awake for the next decade (look up the Sonic Boom Alarm clock on youtube), but in the end James picked the one we are going to try. It is a Hot Wheels alarm clock that makes the sound of cars peeling away from the starting line as the alarm noise, and as an extra perk it looks like the back of a hot wheels car too. We were able to watch it together on youtube to make sure James wasn’t going to freak out once it arrived, and now we are ready to implement the rest of the plan.

As with many of my posts, there is not a neat conclusion or a “hey we fixed it!” moment. Yet. These stories usually unfold over the course of a week or a month, or even have come to a head after several years of working on an issue. When the alarm clock gets here it might further help with the scheduling meltdowns we have been working on.

Now what? When Children with Autism Spectrum Disorders Become Adults

Thanks to Karel and my mom for sending me the same excellent article within 24 hours of each other. After reading, I recommend it to anyone with a special needs child, even if they aren’t on the spectrum. This is one of those topics that keeps me up at night.

There is a link to a cool transition tool for families and adolescents in the article as well. I posted the link to the Transition Tool Kit* below the link for the Times article – both are definitely worth a look!

http://www.nytimes.com/ref/health/healthguide/esn-autism-reporters.html

http://www.autismspeaks.org/community/family_services/transition.php

*If you are between 14 and 22 you can get a free hard copy of the tool kit, above.