Parents of kids with autism, please read

[LydiaNN]

Hello there. I was just wondering if any of you would be interested and participate in a ''sticky'' if I started one for parents of kids who have autism. I ask because sometimes I come across stuff that isn't exactly nursing related, but still would be very interested to the number of us that I have noticed mention having children with autism. I never know where to post it. I usually put it in the ''developmental disabilities nursing'' forum, but it isn't quite right there. Plus I think it tends to get lost, since there aren't usually many responses, so the people who would be most interested end up missing it. At the same time, those responses that I get in that forum are often from people who actually have lots of experience with autism, which is a good thing. Don't get me wrong, I understand that everyone has a right to post in whatever forum is of interest to them. Personally, I would like to see the ratio of responses from people personally involved increase, though. Let me know what you think, and in which forum you think that such a sticky might belong. Thanks!

[Dubah]

As I said above, my angel is 6yrs old and autistic..probably PDD-NOS (I haven't sought a definitive form of autism since original dx at 3 yrs old). We've not had the problems from the neighbors, thank God. My son doesn't throw the tantrums. Our issue for the neighbors has been his affinity for jumping on the trampoline...nude. He'd be out there fully dressed one minute, next thing we'd know he's butt naked..in the dead of winter. He's also known to come out of the house, down the steps to the pool with his swim trunks in hand for me to put on...again, nude..oh, and to relieve his bladder in the yard. Only one neighbor can see into our backyard, and they are a family full of teen boys, so maybe they are more tolerant because of this. He does not strip anywhere but at home, thank God. However, we also have to watch him inside. Sister is a year older and she will have company over and he'll walk out of the bathroom in the buff. The kids and their parents have been great so far, but we're constantly working on the nudity issue. If my daughter was at someone's house and the brother was running around nude, I wouldn't like it..regardless of disability.

A couple of questions for the more experienced:

He has recently decided he likes to open the windows and throw things out, stick his arm out, etc. Once, he climbed out. He's removed (ruined) most of the screens. I thought I was going crazy last week. I left to take the kids to school and the cat was outside. I came home, opened the door and the cat was sitting on the sofa. I shook my head and went to bed. Today, it dawned on me that he had probably left a window open. Soooo, what are the options? We could screw the windows shut, but I really hate to do that to my nice windows. Any other suggestions? I'm terrified he is going to wander off while we're sleeping.

One of you mentioned teaching your child to avoid cars/traffic. How did you teach him? This is one of my greatest fears b/c I do not think he realizes the danger of cars. We've tried the "stay out of the road" thing, but then the next thing we do is go for a walk down the road. Sort of confusing for my son.

Lastly, we DO the 24/7/365 thing for the most part (except for five mins here and there) and have all his life (well, except for the 45 minutes he was lost at a 250 acre water theme park..lol). What do you guys recommend we do to prepare our children so they don't require constant supervision? I'd love to give him the freedom other children enjoy, but I'm terrified...mortified at the thought of letting go.

I don't have an autistic child but I do work with Autistic children. We use ABA to replace unwanted behaviors and teach skills. I think you have to try to make your child as independent as possible, that is what every single parent should aspire for their child. You can't create a bubble for your child, he is going to have to be able to cope in an environment that is not "Autism Proof". What I would do if I was having a problem with a child that kept undressing at inappropriate times? I would first figure out why he is doing it, what reinforcement is he getting. Is that the only time he gets everyone's attention? Does everyone laugh? The first thing would be get rid of any reinforcement he is getting for the behavior. Ignore it! Just have him put his clothes without any reaction don't even say a word. Deny him access until he puts on his clothes. I would also reward him for times when he wasn't undressing. Maybe saying "Hey look at you, you have clothes on way to go buddy" and give him something (toy,cookie, tickle...). Make it so that the only time he would have access to that toy, cookie or tickle is when he is being praised for having clothes on. Start small, and stay committed. I have seen ABA work over and over again with those who were severly autistic and those who were advanced learners, I have seen different forms of treatment for Autism ( my least favorite being the food restrictions) but ABA is the best one.

Hope this helps!

[Spidey's mom, ADN, BSN, RN]

All my kids loved to take their clothes off around toddler to preschool age. All my boys pee'd outside. My #2 son always figured out a way to get out of the house - he climbed up on the roof, he unlocked the backdoor at grandparents to get to the pool. My kids jumped from the roof onto the trampoline. They put the sprinkler on underneath it in the summer and jumped in the water. They dug a hole in the backyard and filled it with water and wallowed in the mud - we have great photos to prove it. My #2 son decided to paint the rocks in the backyard with a spray can of paint my dh uses for marking logs. My #1 son got out the front door when he was 18 months, walked down a staircase and over a bridge - this happened after I put him down for a nap and I was taking a bath. My neighbor fortunately was looking out her window and saw him leave and went after him and when she asked him where he was going, he said "I'm going to Reno to visit my Daddy". I was vacuuming my living room one day and a woman stopped by and knocked on the door and asked me if I knew my two boys were on my roof. I asked them what they were thinking and they said they just wanted to see the world from our roof. I talk to other parents all the time about the stuff our kids get into and we are all amazed that they make it out of childhood for the most part unscathed and I could go on and on with stories . . . .none of my kids is autistic, none of my friends kids are autistic. Have we changed the definition of normal?

Alot of this, imo, is normal behavior . . especially for boys.

Please, I don't want to make anyone mad and I realize you are only telling the tip of the iceberg but I sat here reading this and kept thinking "yeah, that could be any one of my kids".

steph

[LydiaNN]

All my kids loved to take their clothes off around toddler to preschool age. All my boys pee'd outside. My #2 son always figured out a way to get out of the house - he climbed up on the roof, he unlocked the backdoor at grandparents to get to the pool. My kids jumped from the roof onto the trampoline. They put the sprinkler on underneath it in the summer and jumped in the water. They dug a hole in the backyard and filled it with water and wallowed in the mud - we have great photos to prove it. My #2 son decided to paint the rocks in the backyard with a spray can of paint my dh uses for marking logs. My #1 son got out the front door when he was 18 months, walked down a staircase and over a bridge - this happened after I put him down for a nap and I was taking a bath. My neighbor fortunately was looking out her window and saw him leave and went after him and when she asked him where he was going, he said "I'm going to Reno to visit my Daddy". I was vacuuming my living room one day and a woman stopped by and knocked on the door and asked me if I knew my two boys were on my roof. I asked them what they were thinking and they said they just wanted to see the world from our roof. I talk to other parents all the time about the stuff our kids get into and we are all amazed that they make it out of childhood for the most part unscathed and I could go on and on with stories . . . .none of my kids is autistic, none of my friends kids are autistic. Have we changed the definition of normal?

Alot of this, imo, is normal behavior . . especially for boys.

Please, I don't want to make anyone mad and I realize you are only telling the tip of the iceberg but I sat here reading this and kept thinking "yeah, that could be any one of my kids".

steph

I'm not sure I get what you're driving at here. The three categories of symptoms of autism are quantifiable impairment in communication and social interaction and rigid or repetitive behaviors. I don't understand why you think that what you're describing would qualify as possibly indicative of autism in the opinion of anyone familiar with the disorder. And no, we haven't changed the definition of normal. Nor have we changed the defintion of the word typical. My son may not be typical but he's as normal as anyone else. Autism hardly makes someone abnormal, unless we're going to start calling people with any and all conditions that, too.

[33-weeker]

If his speech is impared, why can't he get in under speech? In Texas, there are many Dx that qualify a kid for special ed services. Many preschoolers get in under 'speech' then go on later to get the Autism Dx. There's also OHI (other health impaired) that I think is kind of a catch-all for things that don't fit in other categories.

But I have to agree with one of the other posters... if his speech and social functioning are impaired, then autism should be considered.

As far as gifted, my son taught himself to read at the age of 4. I am struggling with the school to challenge him. They've held him back in PPCD during his kindergarten year due to agressive behavior. But he's bored academically, which may be part of the problem. He goes a couple of times a day to a regular pre-k class. They are trying to mainstream. If I didn't work full-time, I'd yank him out and home school him in a heartbeat!

It's never easy for us moms. :chair:

[Spidey's mom, ADN, BSN, RN]

I'm not sure I get what you're driving at here. The three categories of symptoms of autism are quantifiable impairment in communication and social interaction and rigid or repetitive behaviors. I don't understand why you think that what you're describing would qualify as possibly indicative of autism in the opinion of anyone familiar with the disorder. And no, we haven't changed the definition of normal. Nor have we changed the defintion of the word typical. My son may not be typical but he's as normal as anyone else. Autism hardly makes someone abnormal, unless we're going to start calling people with any and all conditions that, too.

I was responding to another poster who mentioned some of the things I mentioned . . .peeing outside for example.

I do not think what I'm describing qualifies as indicative of autism.

I did not mean to say that autism makes a person abnormal - I was responding to the post about some behaviors I think are the norm in boys . . can't think of a better word right now. I do not think your son is abnormal.

I also mentioned I was not trying to make anyone mad . . . it just seemed like the post mentioning behaviors my kids exhibited was NOT autism. And I also realized that that poster was probably just mentioning "the tip of the iceberg".

Really, I'm not trying to make you mad.

steph

[LydiaNN]

I was responding to another poster who mentioned some of the things I mentioned . . .peeing outside for example.

I do not think what I'm describing qualifies as indicative of autism.

I did not mean to say that autism makes a person abnormal - I was responding to the post about some behaviors I think are the norm in boys . . can't think of a better word right now. I do not think your son is abnormal.

I also mentioned I was not trying to make anyone mad . . . it just seemed like the post mentioning behaviors my kids exhibited was NOT autism. And I also realized that that poster was probably just mentioning "the tip of the iceberg".

Really, I'm not trying to make you mad.

steph

In the first place, what bothered me was that your post sounded very flippant in response to the post of the Mom who was sharing a legitimate frustration. Her son is not toddler to preschool age, he is 6. It is no longer considered cute when a 6 year old whips his clothes off and relieves himself in public. This behavior may not be symptomatic of autism, but it certainly is a manifestation of it in this particular child. To compare that to the antics of a typical younger child isn't appropriate or kind, IMHO.

Lots of behaviors exhibited by people with autism are considered typical in younger children or at lesser extremes. It doesn't make them any less problematic for the families who are struggling to teach their child socially appropriate behavior.

[Spidey's mom, ADN, BSN, RN]

In the first place, what bothered me was that your post sounded very flippant in response to the post of the Mom who was sharing a legitimate frustration. Her son is not toddler to preschool age, he is 6. It is no longer considered cute when a 6 year old whips his clothes off and relieves himself in public. This behavior may not be symptomatic of autism, but it certainly is a manifestation of it in this particular child. To compare that to the antics of a typical younger child isn't appropriate or kind, IMHO.

Lots of behaviors exhibited by people with autism are considered typical in younger children or at lesser extremes. It doesn't make them any less problematic for the families who are struggling to teach their child socially appropriate behavior.

One of the hazards of posting - people can't necessarily determine intent. I was truly not being flippant.

The difference between 4 and 6 is not that great - alot of the antics my boys did happened in elementary school.

I'm not trying to be unkind - I apologize if it appeared unkind.

steph

[blueberrybon]

my twin sister has two sets of twins (both sets girls), and then the last pregnancy was a single child. a beautiful boy. how exciting! it's a boy. two - three years later, things just werent adding up right. but certainly it wasn't anything to "look into". denial. what a vice grip it can be.

now my beautiful nephew is 7 years old, and my sister is working through all of the various ups and downs by writing. it has become quite a counseling tool for her. she has even come far enough along to want to help others with their own "acceptance". she is currently writing a book about her experiences, beginning from the moment the nagging feeling of something being awry started seeping into her thoughts, to where she is now, and what she plans for the future.

she has recently written a poem that captures some of the feelings. i asked her if i could share it here, and she said yes. so here it is, i hope someone gets something out of it, my sister would be glad.

denial

the form of fear is cold and black.

it's bony fingers on my back.

toward turbulence it forces me,

a thrashing, murky, threatening sea.

one direction. no escape.

fear pushes me toward darkest fate.

and in i plunge; despair runs deep,

pleading, hope come rescue me.

through endless tears a spark of hope,

evoking child memory.

how moses though his speech be slow

was used by god still mightily.

but heart of mine, please cease to bleed,

desperate aching to move on.

perspective change, my greatest need

i cannot do it on my own.

god, these gifts bestow on me:

-take my sorrow; lend me joy

-denial's grip and fear release

-accept autism, to help my boy.

ó by brenda olson

[judyblueeyes]

My son is 9. His area of interest recently change from Harry Potter (4-5 years) to Star Wars. He has about 3 good friends that like and/or put up with his oddities and keep an eye out for him at school and he is oddly popular with some of the older kids because of his love for video games at which he excels. He memorized many of the "cheat codes" and other tricks to complete the various games, so the older kids seek him out for advice. He also memorizes dates and keeps mental lists, which I find helpful.

He is in trouble at school for wandering and "getting lost" somewhat frequently. I didn't tell the school that he is not actually lost as he has the whole school floor plan memorized (including the janitor closets, nooks and crannies, etc). He just likes to go check out certain places at times and will slip off if not supervised. He seems to do this when bored or overwhelmed. I like the school to think he's lost so they will go find him, though.

He recently has had a kid that bugs him by calling him "Star Wars Boy" and pushing him into girls. His first bully, I guess (3rd grade). His friends help a lot when this happens by helping my son out of the situation or tattling on the problem kid.

He is very bright and his IQ is high, but he is also a poor student. I know that sounds like a conflict, but I'm not sure how best to describe it. DH works with him for about an hour a day (weekends included) on school work or stuff from the teachers store. We do this instead of school tutoring.

He takes social skills training, pragmatic language therapy and physical/occupation therapy at school. I use "Social Skills Activities for Special Children" by Mannix and a couple of books (both) called "What Would You Do?" (by different authors) at home.

[blueberrybon]

He recently has had a kid that bugs him by calling him "Star Wars Boy" and pushing him into girls. His first bully, I guess (3rd grade).

I'm always amazed at the cruelty of children, and even more amazed at the fact that "bullying experiences" are a common part of a childs life. The fact that your son (and my nephew) already have issues to deal with, and then have the "bully" circumstances to navigate, is a crying shame.

Good luck to you and your family.

Blue

[LydiaNN]

Have you read the article in People where Holly Robinson was interviewed about her son's autism? As with most articles in mainstream publications, especially one as superficial as People, I found it simplistic and annoying. Especially when she says ''we never once considered putting him away''. Um, okay, who said you did? Hardly anyone places children that young out of home. Not saying that it doesn't happen, because of course it does, but it is very much the exception, not the rule. I don't want to judge her because I know the media takes things out of context, but it reads like she deserves some kind of a medal or something.

http://www.celebrity-babies.com/2007/05/rodney_and_holl.html

[radox]

As a none Premium member, I agree that this stuff needs to go somewhere others like me can see it. My Son is almost 13 and has Aspergers. When he was first diagnosed we kept our heads below the parapet and avoided giving him a "label" but still found that we had to tell people involved with him that he was Aspie as because he looks "Normal" it was almost as if we were being accused of making his problems up!