April 2008 Newsletter

Happy April to everyone.

First, let me say “Thank You” to all who came out to the chapter meeting last night. My biggest thanks must go to the family who shared their story with us. They were very candid and honest about what has been going on with them. I appreciate their willingness to give us a glimpse into the nightmare they have been facing.

This meeting was not to scare anyone. This meeting was geared to be informative. We all come together monthly for support from one another. The great thing that seems to happen is that we network with each other and share our experiences with each other. We end up learning from one another. I have often come to meetings and learned something that I didn’t know or have heard something that will make me think about something important that had not yet come to my mind. I hope that something was learned by hearing their story.

I am very aware that some people will say “well, this in not a problem I foresee happening to us” or many people will form their own opinions about the situation. This family wanted to share their experiences with us. They wanted to let us know what they had gone through the past two years and only hope that none of us will have to endure half of what they have been through. We talk about awareness a lot. Awareness must include “the pretty” and the “not so pretty”

Knowledge is power. The more all of us know about things that can affect our children’s lives and potentially our families lives is worth knowing. I truly feel that our chapter is made up of knowledgeable, smart, hard working, willing to do anything for our children, parents. It doesn’t hurt to hear of someone else situation as maybe one day it can be your situation or the situation of someone that you know. I also am very confident that we can’t always talk about the “rosy” side of situations. The reality is that bad things happen to our children who are on the spectrum. The reality also is that they will grow up and be adults. This will lead to them being exposed to many different situations as adults and we need to help them prepare for all that we can.

I’m not going to drag this newsletter out; I just wanted to let everyone who attended know that I and the family appreciated you being there, and that this meeting was not a scare tactic. Many of you have talked to me after the meeting on how we can follow this up. As I stated in the meeting, we will be having some more discussions on this subject and how we can be vigilant in protecting our children while they are young and throughout their adult years.

Thanks and enjoy the month. WHERE IS SPRING?????

Kym

March, 2008 Newsletter

Hi Everyone,

Well, first let me just say I have had enough winter to last me a life time. I’m very ready for warmer weather, because I am definitely a “Sun Bunny”.

Speaking of warmer weather, I have been thinking a lot about the summer. It will be here quicker than we think. There are only about 3months left until the end of the school year. I guess that’s why I’m thinking of the summer already.

Anyway, Isaiah will be going to Camp Soar again for his second year this summer. He went last year, and it was a great experience for him. It also was a great experience for me. Not only because I got some much needed “me” time, but I learned a few things about myself.

I learned that I really needed to have other things in my life besides Autism and my job. This is not to say that these things are not important. The job pays the bills and Autism is a part of my child’s life, but in order to be a well rounded person and a good mom, I have to have some quality time for myself. This makes me struggle between doing things for myself and also doing things that will help Isaiah and his growth in the future. Here’s what I mean.

While Isaiah was away at camp for the week, I was very lost. I spent the first two days worrying and missing him like crazy. I kept thinking to myself, “Why would you send your child away from you?” For two days, I couldn’t find an honest, reasonable answer to that question. Then once I got over all of that, and started thinking clearly I realized that this is all part of raising a child. You don’t have children to keep them under you all of the time and not let them experience all that they can. Even when they have certain issues, they still deserve to be able to be all that they can be.
Sometimes that will mean that they have to experience the world without their parents. Isaiah will not be 8 years old and in school for the rest of his life. He will grow up and be an adult. I’m sure all of you, like me, have been asked at some point by some professional, therapist, doctor or what ever, “What is it that you want ultimately for your child”. I have always said I want him to have some kind of independent life. That must include him sometimes leaving me and spending time away from me. If this is what I really want for Isaiah, then why was I having such a hard time letting him go and get that experience. I was feeling like I just sent my child a way from me. Which is what I did, but I forgot that there was a purpose for this whole thing. The “guilt” was keeping me from remembering that I wanted Isaiah to experience being away from home. Experience trying to make some friendships outside of his usual world. Having a place of his own to go and have some fun.

So, once I got over the “mother guilt”, I realized that I had to start “walking my talk.” Why was I sitting here wasting the days I had left, putting all of this guilt (which is a wasted emotion) on myself and just enjoy the fact that my child had the chance to experience something out in the world that didn’t have anything to do with therapy, school or having to do something hard for him. Not to say that being away from the comforts of home and what he is use to isn’t hard.
The fact is, it is something that needs to happen. I often push him to do things that aren’t easy. Yes, sometimes I feel like a “big mean momma”, but the reality is, I know the world will not care that he has certain issues. The world will not treat him fair all of the time. If I want him to have some independence, I must let him go and find that. I must be willing to realize that I will not be able to protect him for all the bad things, people and perceptions that are out there. I feel my only choice is to teach him how to handle it and deal with it, without me. I didn’t have a child NOT to let him have some independence in his life.

O.K.A.Y., so now you are probably saying, what the heck is the point Kym? The point is that I think many people are afraid to let go. Why wouldn’t you be? Letting go when your kids don’t have Autism is hard, add some kind of social disability like autism and sending them out into this world on their own can be down right scary.

The summer is coming quickly (weather wise, not quickly enough.) Did I mention I’m sick of winter? :) I think it is a good time for me to start to reflect why providing Isaiah with the opportunities to grow and learn in preparation of his older years is important. I don’t want to sound like I’ve got it all figured out, because I don’t. I’m still a work in progress, but I do know that I must stay focused on the later years of life. I have to face it; they will not be in school forever. School (when I think about it) plays a small part in the way of years of his life. K-12 and then he is done. Then what? Maybe some college, or hopefully a job. I feel I need to remember that I am raising someone who will have to be out in the world. No matter “how” he will be out there, he will be out there. I have to let him go and experience all that he can so that when he gets out there he can make the most out of life. So he can learn what he can. Except whatever limitations he has and not fall apart when things don’t go his way. “I want him to have some independence outside of me.” It ultimately means I must put him out there and let him learn how to “do” without me. No more guilt over doing what I know in my heart is the best for him. Now is the time to focus on that and work towards it.

I just wanted to share my thoughts and I also needed to write in my journal, so this took the place of that, so thanks for letting me share.

See Ya Tuesday! NO BAD WEATHER!!!!

Kym

 

January, 2008 Newsletter

HAPPY NEW YEAR!!!!!!!!

Greetings to all of you.

I hope everyone had a great holiday and made it through without too much “madness”.

2007 brought about a lot of changes for me. Yes, the chapter was a big change and one I gladly welcomed. I have enjoyed working, learning, sharing, bonding and most of all the special friendships and connections I have made with many people because of this chapter. First, I must say a huge THANK YOU to Brandy for all the years of devoted service that she gave to this chapter. Believe me, it is time consuming and something you must have the heart to do. Now that I’m getting a feel of what is like to wear these shoes, I must say to her “Wow girl and thanks!!!!!.” If it was not for Brandy and her commitment to this chapter for all these years, many families would not have had this chapter here including myself and for that I am grateful. I also must thank Randee, Wendy and Carolyn for sitting on the board with her. They also made many sacrifices so that this chapter could continue and they too are a very important part of making all of this work. Which brings me to my board. First, let me give a huge THANK YOU to Rachel for being such a wonderful Vice Pres. She truly tries to help as much as she can and is very much a part of the reason why I feel I can continue to help with the chapter. I also must say thanks to Faith and Kris for everything they do to help this chapter is needed and appreciated. Wendy (who served on the former board) is still with us on this board in the compassity of taking care of the web site for us. She is also responsible for starting the Yahoo Group and continues to mange that now. So THANK YOU Wendy.

For this year, we would love to continue to offer speakers, information and activities for the families. It was such a joy for me to see everyone have such a good time at the pool party this past May. We want to continue to offer these things and I hope that everyone is willing (if ever asked) to step up to the plate and help make things possible for our families. Events, some speakers and paper to print information to pass out at monthly meetings, has some cost behind them. There are people working behind the scenes to raise money for these things and every now and then we may ask for members help. We want to keep with the theme of this chapter all these years of not asking our families to shell out money if we don’t have to, but occasionally we might ask for some help with fund raising (hint, hint) so be ready. J

This year also brought about something that was huge for me and at the top of my agenda. We now have childcare Yeah!!!!. Our child care is being run by two teacher’s aid from district 54. Kathy Lockerfeer and Pam Baldamenti. They were actually the first people who were kind enough to see our need and want to help us out. They had my son Isaiah in their class and also had Rachel’s son Jose’ Daniel and a few other chapter members children in their class. So when you see them at a meeting, take a minute to say “thanks”. Even if you don’t bring your child, they are making it possible for others to come who need the support.

This was especially a big issue to me because this was what kept me from coming to a chapter meeting for almost a year, until I could work out child care at home for Isaiah. I feel very happy that we can now offer it. It was very hard to work out and took almost a year to get it done. I now see why it is considered a “luxury” to be able to offer child care at meetings. Please pass the word that we now offer it and check the website for more info on child care. We want as many families as we can to be able to take advantage of this opportunity.

We (as a board) have many things we would love to see for this chapter. So I just hope everyone is just as excited as I am for the direction we want to go in. Many of you know me pretty well by now and know that I am here for anyone at any time. If I can ever be of any help to anyone, or if you have a question, comment (complaints keep to yourself J) then please contact me.

In closing, I want to thank ALL OF YOU for making me feel so welcomed as your new President and I hope to continue to move in the right direction, for all of us.

Here’s to a wonderful, insightful 2008! With a lot of laughs, because if anyone needs them, it’s us.

See ya in February.

Kym

 

November 2007 Newsletter

Hello Everyone,
Its been awhile since I've written so I'll just have to cover the past couple months in a series of small episodes or glimpses over the next several months until we are all caught up.
Tyler is in 6th grade now, which is considered midlevel in his school. He is blended together with all of the 6th, 7th and 8th graders and switches for each class period. Moving up into midlevel meant a whole new team of teachers that have never really gotten a chance to work with him before. All the teachers know of him either because of having Emmy in their classes or because he is a 125 lb. constant form of movement, speaking to himself while skipping down the hallways most days.
Usually introductory amounts of time are commonly known as "honeymoon periods" and hopefully they are all falling in love with him in one way or another but I completely understand if they are also feeling a need to file for a "separation agreement" by now. The team is doing a phenomenal job with him, especially since he tends to push the envelope just a bit too much. If he's not blatantly lying to them about something "My family went away to San-Fer-rix-Co for the weekend and left me home alone so that's why my homework isn't done." Then he is "firing" his classroom assistant or asking to change his homeroom daily.
What starts to drive you the craziest is that he is too damn smart for his own good. For instance in math all the students play a game called the "equations game". It's much too involved for me to explain here but part of it is rolling dice and then creating equations out of the numbers and symbols rolled. Tyler refuses to make more than 2 equations on any given day. I had Tom go in and meet with the math teacher to learn the game and hopefully figure out a way to modify it for Tyler so that he would better understand it and be able to make more equations. So the teacher is showing Tom how to play and Tyler comes in and says "Can I teach my dad?" "Sure" the teacher says. Tyler starts to roll the dice and explain to dad "Now make as many equations as possible with the dice, no less than 4 equations." "Excuse me Ty?" says his SST "How many does dad have to make?" "As many as possible," he says, "unless you are me then you only are required to make at the most 2!" Doh! Its not that Ty doesn't understand how many equations he can make its that he understands all of us so well that he thinks as long as he plays dumb he can get away with doing the least amount possible.
His Humanities/Social Studies teacher asked him to water a plant the other day for her to which he responded "I am feeling too shy to do that." What? Shy boys do not engage complete strangers locked in an elevator with them into elaborate discussions about "Hurricanes vs. Tornados which would you rather die from?" If he's not trying out the "I'm too shy" line then he simply states "I am just a scared autistic boy" to try and get out of things, which even Tom was falling for! (Which is why Tom continues to be referred to as "The Weakest Link" but I digress) Scared Autistic Boy my Aunt Fanny! Any other day this kid is stating "I am not autism!" and in complete denial of the autism club in which he is a lifelong member of.
Then on another occasion I happened to walk into a firm discussion his instructional assistant was having with him. Upon seeing me enter he said "Your husband may very well kill me when he hears about this." Only to be told that the assignment he had been ignoring and refusing to do for the past 3 nights had unexpectedly flown out of his binder in a flurry of chaos in the hallway and has yet to be found.
This team of teachers will be working with Ty for the next 3 years, God Help Them!! I truly hope for each day he drives them absolutely crazy he also gives them one or two moments of letting down his guard and showing them just what an amazing kid he truly can be. That is, when he's not trying his hardest to pull one over on them.
See you all next Tuesday,
Brandy
P.S. I have so much more to tell you about but it will have to wait until next month!

October 2007 newsletter article

When I first heard about the calendar topic this year about friendships, I thought to myself "well, I can't contribute". You see, my son is one of the lower functioning children with autism in our group. But I realized he does have friends. They just are a different kind of friend. They are friends of convenience. Yes, my son is a user. All of his friends serve a purpose. To do my son's bidding. When he was small, the neighborhood kids, Scott and Katie were his best friends. They would come over and push him on the swings, squirt him with the hose, and they made the best bubbles! Now Scott and Katie are in high school like John, but they no longer want to swing, play with water or make bubbles. They have served him well, but he no longer plays outside with them. They have evolved; my son is still stuck in childhood. They served their purpose, and now they are done.
As he entered school, he always loved Meredith. The teachers used to joke that no matter where Meredith went, John was not far behind. We always thought it was so cute. Until I realized he really didn't love Meredith. He loved her wheelchair. He loved the sensory input he got from pushing Meredith. He loved the wheels on her chair. He loved the bangles hanging from her chair. Yes, he loved a wheelchair. And that really hasn't changed. If you look at any picture from school or summer camp, my son is always standing behind the kid in the wheelchair. Aaahh, the love affair continues. And the wheelchair serves a purpose to him. Are you seeing a pattern here?
As he ages, he is finding it easier to make friends. He's got friends coming out of his ears. You like the feeling of water on your face? Awesome! He loves to splash in the pool. New purpose, new friend. You like to steal food? Awesome! He hates to eat at school. New purpose, new friend. You like to touch things? Awesome! He loves to be tickled. New purpose, new friend. You like to color? Awesome! He hates the feeling of a crayon in his hands. New purpose, new friend. Even when he isn't in the equation, his interests make him friends. My friend Brandy's son Ty, is always calling me and asking me questions about Johnny's video and dvd watching habits. My son can't hold a conversation with Ty so he asks me instead. He gets the information he needs from me. I serve a purpose to Ty, I am his friend.
My son does a few true blue friends. Through thick and thin, he can count on them. Thomas, Gordon, Henry and James. Winnie, Tigger, Roo and Kanga. Richard Scarry and Barney and Spot. Friends til the end.
And I have forged some wonderful friendships through the years in this chapter, thanks to my son. He has autism, and I needed support. He served a purpose for me, and he is my friend.

Wendy (filling in for Brandy this month!)

 

September 2007 newsletter article

As teachers all over the country open their doors and welcome children into their classrooms, the age old ritual of getting to know each other begins. The teachers begin the process of getting to know their students; students are learning what expectations the teachers have for them and the personalities of their fellow classmates; and parents are trying to figure out how and where they fit into the picture. This is happening in all classrooms regardless of the type of classroom.

For those of you who have not attended a meeting where I have been present, allow me to introduce myself (everyone else skip down to the next paragraphJ), my name is Carolyn and I am a teacher. I teach a second and third grade multiage classroom of typically developing students. I have had the privilege of having a child with autism and a child with Asperger's syndrome come through my classroom. Both boys are wonderful, kind, smart, and taught me as much or more than I taught them.

I think Brandy asked me to write this month because of an email I wrote. That email, I hope, provided perspective. It is easy for all of us, teachers included, to loose sight of the bigger picture. At this time of year it is important to remember to keep the big picture in mind. What do you hope your child will gain this year? Have you communicated that to your child's teacher? Have you asked the teacher what grow they hope to see in your child?

My hope for all of you is that you will take a few minutes to think about the following ideas. First, children will work to meet your expectations. Have you set yours high enough? If you have very high expectations for your child you might be amazed at what they accomplish in a single year!

My favorite example of high expectations is my cousin and her son. When Matt was just two years old he was speaking using only vowel sounds. She had him tested through Easter Seals and he began a developmental preschool shortly thereafter. Her expectation was that his speech would eventually be perfect. As a young mother of four she never thought to ask if her expectations were unreasonable. Our family belief system is that hard work and a good attitude will get you were you want to go! My cousin worked with her son at home and asked him over and over to pronounce words correctly. In short, she never lost the belief that Matt would meet her expectations.

Matt is now in college and I still have not forgotten the phone call the day of his exit interview from preschool. My cousin was beside herself! She had asked when she could expect the remaining speech problems to be corrected, a year, two years, or would it be three years? She was not prepared for the answer along the lines of, "We don't know what to tell you, we did not think he would come this far." My cousin wanted to know why they had not shared this with her when he started. The word anger does not seem enough to express her reaction. My response, "They set their expectations high. If they had told you their expectations were high but they really were not sure if Matt could reach them, would you have been the same parent? Would you have pushed him to say 'guitar' six times before it came out clearly? Would you have let sympathy for your child and doubt that he could meet expectations cloud your parenting? In all honesty she needed time to cool off and think about the ideas I had just presented. It took some time for her to regain perspective and to realize that the teacher setting high expectations and holding back a little bit of information was the best thing that ever happened to her son.

Another idea to give consideration, begin with the end in mind. For many children with autism setting small goals and continually changing the expectation is difficult. For example Brandy's son Tyler started sixth grade this school year. There is a morning routine to get the day started that includes standing to say the Pledge of Allegiance. Tyler does not want any part of getting the day started including standing for the pledge. Ty is a clever kid and realized that without a "reason" the teacher would require him to stand, Thursday's reason for being unable to stand, itchy legs. (No, he absolutely did not get away with that!)

The expectation in this case is that Tyler will participate in every aspect of the morning routine, something he is fully capable of doing. After the first two days of school when it becomes apparent that he does not want to comply with the morning routine he is presented with a mini-goal, stand without providing excuses. You see from Tyler's perspective the expectation is to stand without complaining. If mini-goals are set he is unaware that in a few days or weeks what he is doing will not be good enough. He will find this out when the first goal is reached, he has had a few days to practice, and he is comfortable with the new routine. Now we ask for more and when he gets there we send the "not good enough" message again by raising the bar. I know what some of you are thinking, "We explained to him the larger goal." Keep thinking from the child's perspective, he is only being reminded and reinforced for the mini-goal.

Now think about setting a very large goal, in this case the goal is the same. Tyler is told he will need to fully participate in the morning routine. While his team has decided on a logical sequence of mini-goals they are not shared with Tyler. He is simply reinforced for everything he does correctly and reminded (if appropriate or necessary) of the things he is still working to achieve. When he reaches the goal he will be aware of his accomplishment and know that he has met the expectations. Since Tyler is setting the pace himself he may meet our expectations faster than we anticipate.

If you set expectations too high there is no down side. As long as you have encouraged and supported your child you can feel good about the progress they made. Sometimes as adults we misjudge what will be difficult. What is torture to do with the family might not be difficult at all with 22 peer models. The families I have worked with over the years, those of typically developing kids and those with kids who develop differently, the feeling is the same, "Wow! Look how far they came!"

 

July/August 2007 Autism Newsletter article

When do autistic rituals, behaviors, OCD's, etc…get to "A point of No Return"? What I mean is the behaviors that you allow your autistic child to do at two, will they still be doing at 22? When Ty was first diagnosed at 17 months he was easily the youngest child with autism that we knew of, the only child actually. All the people that we met during that first year of our autism had children that were at least a year or two older than Tyler was. By being around these people and getting to know their families I was also observing what I considered "Do's and Don'ts" of raising an autistic child. The moms would gather together for a play group kind of thing and I would see that at age 5 my girlfriends son was still stripping off all of his clothes. Or that another child at age 4 was still bolting from the house or yard. Yet another child was off in a room by themselves rewinding videos over and over.
When kids, autistic or typically developing, are little it is very easy to write off unwanted behaviors. The mom of a typical child simply states "Oh, they must be tired." or "I wonder if his two year molars are coming in?" Sure new molars always go hand in hand with absolute, ear piercing, fit throwing tantrums in the middle of Toys R Us, yeah right. Where as the mother of an autistic child may simply state "Oh she's autistic" and immediately all the moms around the Thomas Train Table sigh and nod there heads with pure looks of sorrow for you. You gladly accept the pitiful looks because at least it got you out of why your child is acting the way they are. Phew, one more uncomfortable moment dodged. Though over time this child grows and although the Thomas Table still attracts pretty much only pre-schoolers , your little one is now in 4th grade. Times have also changed and everyone pretty much knows someone now a days affected by autism so when you say "I'm sorry he pushed your child, he's autistic" You may very well hear back "So is my nephew and he doesn't act like this!" Ouch, that hurts. When your six year old happens to strip at a family picnic and everyone runs over to say "Its okay we understand" don't buy into the comfort for a minute because I guarantee no one will understand when he does it in a few years and now has pubic hair.
"Think Ahead" is the biggest piece of advice I can give anyone with a child with autism. Even when your autistic child is 13 it is never too late to think ahead to age 30 and how inappropriate that behavior will be then? Don't allow yourself to get bogged down with educational or academic concerns when their biggest issue to overcome will always be social behaviors. It is very easy to become absolutely absorbed with "I don't feel that little Timmy is getting enough speech minutes" or "I'm not sure Sarah's teacher is truly understanding her autism." Our children are only in a school setting for a mere 12 to 16 years of their entire life. Believe me know one will consider that 28 year old Sarah's punching-through-a-wall tantrum may have been caused by her 5th grade teacher not really "getting her".
THINK AHEAD!
Right now we are currently working very hard to curb Tyler from talking to himself in public. I know that all my parents of non-verbal children right now are thinking "What I would give for my child to talk to himself, and here she is trying to shut him up." At age 11 Tyler has still been non-verbal longer than verbal so I hear where you're coming from. Either way though this is our current battle and behavior to over come at the moment.
We have made a rule that talking to yourself inside our home is allowed but anywhere else is not. Tyler has a constant running dialogue going at all times and if you interrupt to ask "Hmm, what did you say honey?" You are always rewarded with "No, I'm talking to myself." For awhile we didn't even notice how out of control it had become. It was just such a constant hum in the background and we were unaware of all the looks and stares he gets when in the act of it. Add, the pacing back and forth like a caged tiger as well as some hand flapping and flicking his chin to the mixture and you pretty much got yourself a one man band gone amuck! Right now while I'm typing this he is sitting on my bed saying "Hello? Is Tyler in the office right now? He is not? Please have him call me back immediately regarding his ebay purchase!" (What goes on in that mind I hope to some day find out.)
This may seem like a mild behavior to some out there dealing with bigger issues at the moment but it was just last week that I realized just how big of a deal talking to yourself in public can be. My nephew Zach, who is 16 was visiting for the week. He happened to go for a walk outside without letting me know which would normally be no big deal. Anyway it was about 10 minutes later that Zach entered the house with two police officers in tow. They immediately stated that my nephew was not in any trouble but neighbors had called 911 because "they didn't recognize him, he wasn't wearing shoes and he was talking to himself". The cops stopped him and asked where he lived which he responded that he was staying two houses down visiting his aunt. They asked where his shoes were and he told them they were on my deck because they had been hurting his feet which he then showed them the blisters. They didn't need to ask him about talking to himself because when they pulled up he needed to remove his ear buds in order to hear what they were saying over the heavy metal tunes he had been singing along to. So yes, I live in a possibly uptight neighborhood but on the other hand this very well could happen to any of our kids without the very calm results of this incident. Many of our children hate wearing shoes and many talk to themselves and I guarantee our children will look much more suspicious and delusional than my Abercrombie and Fitch clad nephew!
I guess in closing I am coming to the realization that I will always have some issue of some sort that we are currently working on with Ty. I would much prefer working on something at all times with him as opposed to leaving him all alone in his own world with just his behaviors and himself. Although he seems content I would hate to find out years later that he was awfully lonely in there and glad on the occasions when Tom and I happened to "barge in". I sleep much better at night knowing that I am his personal "House Guest from Hell" in Tyler World (where if I have anything to do with it, he only visits occasionally rather than lives there).
So go knock on the door to their worlds, bust it down if you have to, shake up their routines and rituals because it will only prepare them for the big world that awaits them as adults.
See you all in August,
Brandy

Are You Prepared for a Autism Emergency?
To ensure safety and lower risk for a child or adult with autism, parents and care providers will need to become proactive and prepare an informational handout.

A leading cause for concern are children and adults who run away or wander from parents and care providers. Tragically, children and adults with autism are often attracted to water sources such as pools, ponds, and lakes. Drowning is a leading cause of death for a child or adult who has autism.

Wandering can occur anywhere at anytime. The first time is often the worst time. Another concern is preparation in the event that you become incapacitated or injured while caring for a person with autism at home or in the community.

An informational handout should be developed, copied and carried with you at all times--at home, in your car, purse or wallet. Also circulate this handout to family members, trusted neighbors, friends and co-workers. The handout will also come in handy if you are in an area other than your neighborhood and are approached by the police.

If wandering is a concern, contact law enforcement, fire and ambulance agencies. Ask your local 911 call center to "red flag" this information in their 911 computer data base. Dispatchers can alert patrol officers about your concerns before they arrive. When we provide law enforcement with key information before an incident occurs, we can expect better responses.

Alert your neighbors
The behaviors and characteristics of autism have the potential to attract attention from the public. Law enforcement professionals suggest that you reach out and get to know your neighbors.
· Decide what information to present to neighbors
· Does your child have a fear of cars and animals or is he drawn to them?
· Is your child a wanderer or runner?
· Does he respond to his name or would a stranger think he is deaf?
· Plan a brief visit to your neighbors
· Introduce your child or adult or provide a photograph
· If a neighbor spots your child outside of your yard, what is the best way for them to get your child back to you?
· Are there sensory issues your neighbors should know about?
· Give your neighbor a simple handout with your name, address, and phone number. Ask them to call you immediately if they see your son or daughter outside the home. This approach may be a good way to avoid problems down the road and will let your neighbors:
· Know the reason for unusual behaviors
· Know that you are approachable
· Have the opportunity to call you before they call 911
For more information, visit http://www.autismriskmanagement.com/ - by Dennis Debbaudt © 2005

Knowing your neighbors can lead to better social interactions for your loved ones with autism.

Prevention
If wandering is an issue for your family, consider contacting a professional locksmith, security company or home improvement professional.
Autism Emergency Contact Handout Model
· Name of child or adult
· Current photograph and physical description including height, weight, eye and hair color, any scars or other identifying marks
· Identify your child's favorite song, toy or character
· Names, home, cell and pager phone numbers and addresses of parents, other caregivers and emergency contact persons
· Sensory, medical, or dietary issues and requirements, if any
· Inclination for elopement and any atypical behaviors or characteristics that may attract attention
· Favorite attractions and locations where person may be found
· Likes, dislikes--approach and de-escalation techniques
· A list of things that frighten your child
· Method of communication, if non-verbal sign language, picture boards, written word
· ID wear jewelry, tags on clothes, printed handout card
· Map and address guide to nearby properties with water sources and dangerous locations highlighted
· Blueprint or drawing of home, with bedrooms of individual highlighted
For more information, visit http://www.autismriskmanagement.com/ - by Dennis Debbaudt © 2005

Provide local first responders with information on your child.
http://www.papremisealert.com/sitebuildercontent/sitebuilderfiles/responder.pdf
Fill out and print this form from Pennsylvania Premise Alert, then deliver it to your local police and fire departments.
Teach your child to swim.

Too often children with autism who wander are attracted to water. Be sure your child knows how to swim unassisted. Swimming lessons for children with special needs are available at many YMCA locations. The final lesson should be with clothes on.
Get an ID Bracelet for your child.
Include your name and telephone number. State that your child has autism and is non-verbal if applicable. Here are some examples.
http://www.medicalidstore.com/
http://www.mypreciouskid.com/medical-id-bracelet.html

If your child will not wear a bracelet or necklace, consider a temporary tattoo with your contact nformation. Tattoos with a Purpose are available at http://www.nationalautismassociation.org/products.php?cat=48
Consider a personal tracking device.

Gemini GPS Tracking Unit
http://www.geminitracking.com/
Personal GPS tracking device works with your computer or mobile phone. Monthly service fee.
Ion Kids Tracking Wristband
http://www.nationalautismassociation.org/products.php?cat=34
http://www.ion-kids.com
Provides notification to parent when child wanders past a pre-set distance. Allows parent to track child while still within a 500 sq. yard area. Waterproof wristbands are available.
Project Lifesaver Tracking Systems
http://www.projectlifesaver.org
Project Lifesaver works in coordination with local rescue personnel. Search equipment is housed and maintained by local police or fire departments. At-risk individuals are provided with a transmitter wristband which is replaced monthly. Initial setup and personnel training costs approximately $7,000. For a program DVD and package to present to your local first responders, please contact Project Lifesaver at www.projectlifesaver.org.
Recent article about Project Lifesaver Tracking System
http://www.nj.com/news/gloucester/local/index.ssf?/base/news-6/1180077153288140.xml&coll=8
Care Trak Transmitters
http://caretrak.com/
Care Trak utilizes the same technology as Project Lifesaver, but tracking equipment is operated by the caregiver and not local law enforcement or first responders.

 

website hosting by 10000mb.com 10,000mb of space only $50.00 per year
Want to build your own site? Take our website design and tutorial. It's fun, it's easy