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!

[33-weeker]

I know that it is frustrating for the whole family but if your child needs constant supervision then your child needs constant supervision. Yes, it is sometimes inconvenient and yes, it takes away from normalcy but it is safer than your child running in front of cars, stranger danger, and complaints of innapropriate behaviors. I just hope that everything has worked out for the best for that family and that little boy.

Constant supervision 24/7 is not realistic if a parent wishes to stay sane and not keel over from exhaustion. I'm speaking from the perspective of being a working mom who is tired on her days off (no choice, I have to work $). I also have 2 other children with problems.

Also, in my son's case - this was new behavior. Before this, I knew when to watch him close and when he was entertained enough that I could turn my attention to something else for a few minutes to sometimes even a half hour. All of a sudden, the rules of the game changed.

What parents of these kids need is compassion... and help!

[nurs4kids]

Constant supervision 24/7 is not realistic if a parent wishes to stay sane and not keel over from exhaustion. I'm speaking from the perspective of being a working mom who is tired on her days off (no choice, I have to work $). I also have 2 other children with problems.

Also, in my son's case - this was new behavior. Before this, I knew when to watch him close and when he was entertained enough that I could turn my attention to something else for a few minutes to sometimes even a half hour. All of a sudden, the rules of the game changed.

What parents of these kids need is compassion... and help!

Mom of a awesome 6 yr old with autism here. I think the difference here is that when they are young like ours, it's easier to supervise 24/7. You child-autism-proof the house, you can take five or ten without much worry. You fence in a yard, you can let them play without having to constantly keep an eye on them. When they are older, they can unlock doors and windows, open gates, climb fences, etc. I imagine that is when it becomes very difficult. I know I am very concerned about the upcoming years.

I can't imagine three with autism, one is sometimes more than I feel I can handle..and he's mild. My heart goes out to you!:kiss

[nurs4kids]

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.

[LydiaNN]

nurs4kids, I don't think you have a choice but to put screws in your windows, at least temporarily. You can continue to work on teaching him about the danger, but until he learns that lesson, you can't take chances.

I don't have much in the way of suggestion for teaching your son to not need supervision. In my son's case, I also supervised him constantly until he was probably 8 or 9. He just became mature enough not to need my eyes on him every minute anymore. He still needs much more supervision and assistance than a typical 14 year old, and most likely always will.

[33-weeker]

There are latches that screw on the windows and can be taken off again. They leave no holes or anything. You can even adjust them to allow the window to be opened a couple of inches to let the breeze in, but not opened all the way. You can get them at places like Lowe's (hardware store). I have them. The kids have not bothered them so far.

[nurs4kids]

thanks! i'll head to lowes today!

[LydiaNN]

CDC now says 1 in 150 kids have autism.... Does this surprise anyone here? Probably not. It seems even more common than that to me. It annoyed me a bit on MSNBC, where the reporter said ''parents and doctors disagree on the cause of autism'', as if: a) there actually is only one cause and b) all the doctors think one way and all the parents think another.... Gee, what about doctors who themselves have children with autism? I wonder whose "side" they're supposed to take...

[Jolie, BSN]

Mercy,

I believe that the incidence of autism has increased, but have to wonder how many kids with other disorders are mis-diagnosed (for convenience sake in the school setting) because it's easier to address the needs of a group of kids, rather than focus on their individual issues.

I personally know of 2 kids who have been "labeled" as autistic by their respective school districts, despite clear and convincing evidence (and statements from medical specialists) that they do NOT have autism. One suffered a brain injury from lack of oxygen during surgery at 3 years of age. The other most likely has Rhett's, but her parents' insurance won't pay for additional testing. Both children have some characteristics in common with autistic children, but also many differences. It is easier for the school districts to "lump" them in with the autistic children than to develop individual programs specific to their needs.

And both families feel trapped. If they insist that the "autistic" label be removed from their children's records, they risk losing desperately needed services. But by accepting the "label", they know that some of their children's individual needs will never be addressed.

This points out the critical importance of accurate diagnosis and differentiation of developmental disorders, and the need for cooperation between medical and educational professionals.

[33-weeker]

I have 2 kids with PDD-NOS (mild autism). I guess because I'm a nurse I'm not so bothered by labels. I deal with diagnoses all the time. My attitude was, "call it 'purple-polka-dotted syndrome' if you must - just get my kids the help that they need." The bottom line is - are the kids getting the proper meds/therapies/assistance?

My other child I am certain is bi-polar. At first I was upset because I felt the NP we see for med management was not believing me or at least not agreeing with me. She persisted in calling it the blanket 'mood disorder' and kept pushing the ADHD Dx, which was his original Dx. Perhaps he is co-morbid for ADHD - I'm no expert - but I only see hyperactivity & impulsivity when he is manic.

Anyhow, I finally read up on it enough that I began to realize that it is difficult to diagnose in kids (no proper DSM guidelines for bi-polar in children), and the Dx is usually not given this early (he was 5 1/2 then). I decided, since she was prescribing the correct medications for bi-polar, I was not going to waste any more energy getting caught up in the labels, so long as he's getting what he needs.

Some options for getting a correct diagnoses is to demand a second eval from the school, or get an independent eval from an outside source (MD, psychologist, etc.). Check your state's regulations for your school district and see to what you are entitled.

[LydiaNN]

I have 2 kids with PDD-NOS (mild autism). I guess because I'm a nurse I'm not so bothered by labels. I deal with diagnoses all the time. My attitude was, "call it 'purple-polka-dotted syndrome' if you must - just get my kids the help that they need." The bottom line is - are the kids getting the proper meds/therapies/assistance?

My other child I am certain is bi-polar. At first I was upset because I felt the NP we see for med management was not believing me or at least not agreeing with me. She persisted in calling it the blanket 'mood disorder' and kept pushing the ADHD Dx, which was his original Dx. Perhaps he is co-morbid for ADHD - I'm no expert - but I only see hyperactivity & impulsivity when he is manic.

Anyhow, I finally read up on it enough that I began to realize that it is difficult to diagnose in kids (no proper DSM guidelines for bi-polar in children), and the Dx is usually not given this early (he was 5 1/2 then). I decided, since she was prescribing the correct medications for bi-polar, I was not going to waste any more energy getting caught up in the labels, so long as he's getting what he needs.

Some options for getting a correct diagnoses is to demand a second eval from the school, or get an independent eval from an outside source (MD, psychologist, etc.). Check your state's regulations for your school district and see to what you are entitled.

I agree, as pertains to the dx of autism. What difference does it actually make if its in the kid's records? Who is that accesses these records anyway? It isn't a label, it's just a word. A magical word sometimes, since it is the only way some kids end up getting the help they need.

[Jolie, BSN]

It isn't a label, it's just a word. A magical word sometimes, since it is the only way some kids end up getting the help they need.

I understand what you are saying, but in the case of the little boy I discussed above, it is having the opposite effect.

The parents were surprised by the school district's "diagnosis", but didn't fight it since it did avail them of the services their son needed, such as close supervision on the playground, OT, Speech, etc. Now he's been in the district for awhile (3rd grade), and it has become undeniably apparent that he is gifted academically. (The district won't place him in the gifted program, though, because they say he lacks the social skills necessary to participate.) The district is insisting that the ASD "diagnosis" be removed, stating that he doesn't fit the criteria. (DUH! that's what the parents and medical specialists said all along.) But they will also DC the services he continues to need, most notably OT and Speech. The district is unwilling to accept the evaluations the parents have had done by local medical and developmental specialists which indicate an alternative diagnosis and a continued need for services, despite his academic standing. The parents are now in the opposite position of having to fight to keep an inaccurate ASD "diagnosis" in order to maintain their son's services.

It is difficult to understand or describe the "politics" of special education in this district. All I can say is that the school officials and specialists in this building detest parental involvement, and often undermine parents' efforts to become educated about their childrens' needs, involved in their education, or advocate for their children. Most parents get tired of beating their heads against a wall and give up. When they meet a persistent mother (like this boy's), they throw up every possible roadblock. I have no doubts that this will eventually land in court. How terribly sad, especially given that this is an affluent district that is not lacking the resources necessary to provide for this child's modest needs.

[LydiaNN]

I understand what you are saying, but in the case of the little boy I discussed above, it is having the opposite effect.

The parents were surprised by the school district's "diagnosis", but didn't fight it since it did avail them of the services their son needed, such as close supervision on the playground, OT, Speech, etc. Now he's been in the district for awhile (3rd grade), and it has become undeniably apparent that he is gifted academically. (The district won't place him in the gifted program, though, because they say he lacks the social skills necessary to participate.) The district is insisting that the ASD "diagnosis" be removed, stating that he doesn't fit the criteria. (DUH! that's what the parents and medical specialists said all along.) But they will also DC the services he continues to need, most notably OT and Speech. The district is unwilling to accept the evaluations the parents have had done by local medical and developmental specialists which indicate an alternative diagnosis and a continued need for services, despite his academic standing. The parents are now in the opposite position of having to fight to keep an inaccurate ASD "diagnosis" in order to maintain their son's services.

It is difficult to understand or describe the "politics" of special education in this district. All I can say is that the school officials and specialists in this building detest parental involvement, and often undermine parents' efforts to become educated about their childrens' needs, involved in their education, or advocate for their children. Most parents get tired of beating their heads against a wall and give up. When they meet a persistent mother (like this boy's), they throw up every possible roadblock. I have no doubts that this will eventually land in court. How terribly sad, especially given that this is an affluent district that is not lacking the resources necessary to provide for this child's modest needs.

This situation reminds me of something. When my son was in the elementary school, his teacher asked me if I'd participate on the Community Advisory Council (every district had to send 2 parents). I served 2 terms and believe me, that's enough for anyone's lifetime, but for some reason, the other parent had been participating since her daughter was in early intervention and that girl is now in 5th grade and her mom's still on the committee. To each their own.

The Special Ed director wanted to meet with us to discuss the Council's strategic plan to which we were to give input. In the course of this meeting, he actually said, right in front of me, ''yeah, these parents of kids with autism tend to get more for their kids because they're so vocal''. To which I replied, uh, is that supposed to be an insult? Administration is the one that sets up a system where sometimes the only way you can get them to meet your child's needs is to be adversarial. I do what needs to be done. I'd rather do it nicely, but if he's going to make me be a beyotch, than I will be. God knows it wasn't the first time in my life I had to be like that...

I do know that I've benefited immensely from the fact that there is so much wealth in this area. Number one, the schools are so much better than average. Number two, so many parents do have the resources to get lawyers and fight the system, that the system tries to get away with less than most other school districts. I have heard and read some appalling abuses of IDEA from people in other states. I know there are some where IDEA is nothing but words on paper. Parents can try filing suit, but since the courts in those areas won't do anything about it, what can they do? I hear the 9th Circuit getting slammed quite a good bit for being so liberal, but when it comes right down to it, the far left has been a friend to special education over the years. I do feel fortunate that my son has received the quality of service that he has and I think it is dreadful that we are still failing so many of the children in this country. Despicable, really.