New to this and just posted in wrong area!!

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Hi!!
Well first of all, I am very new at this blog thing...and just posted in the wrong area on here! I got a very nice man who helped and pointed me in the right direction!! thank you again Alex!!
Okay, I am writing pretty much out of desperation!! I am a grandmother to a 12 yr old boy who now resides with my husband and I. We received custody in Dec but have had him since April of 2010. He is my husbands grandson, however, I so love him as if he were my own childs son. Prior him coming to live with us he lived in a sad situation where the home was in total disarray, no behavior therapy was being done, meds were hit and miss, and NO education values were ever set. However, since he came to live with us, we do set rules, we have placed him with a behavioral therapist, we monitor all meds and keep track of them, we value education and make sure he gets what he needs in that area. We also have set boundaries with him. We gave him a huge med vacation over the summer as we needed a base line, since Aug he has been on meds and we follow them every 2 weeks with his doctor.
Of course he HATES the rules and consequences!! However, we felt he needed some sort of consistency in his life. He does well some days and others are just a mess for him! We have recently run into some new behaviors with him. He is now hitting other children, arguing with myself as well as his teachers, refusing to follow daily living skills such as bathing, teeth brushing and keeping his room picked up. Prior living with us he was pretty much left to do anything he wanted. He had cut clothes up, taken a knife to the car seats and completely destroyed them, he started fires on the kitchen floor, took knives out of the kitchen and hid them throughout the house he was living in. I would go on..but I think you have the just of that scenerio.
Right now I am at my wits end!! ! Everyday is something...either at school or at home. For 4 weeks now we have had a daily battle over something! We have taken his favorite toys away, taken all electronic devises away, put him in time outs, and kept him from attending a special event at school. NOTHING is working!! ! I am not sure if we are going into puberty or if we are looking at just being defiant, or is it the Aspergers?? I am so hoping a parent out there can relate to this scenario and help provide some sort of feed back, help or advice. His therapist works with his social skills and some behavior. She keeps telling us to keep our chins up and keep up what we are doing. However, I am so close to just ripping my hair out on a daily basis as I am so lost now.
I try to keep up a positive attitude and keep happy, but its not working anymore. Today, I got up and said to myself,,,lets make it a fun day before he goes to school. So, I made a special batch of french toast, fruit dish and juice for him before he got up. What did he do?? He ate maybe 1/2 of it and said to me "Grandma, I think you should had put more cinnamon in this, can I give it to the dog?" I so wanted to throw it at him, but I calmly took it from him and told him to get dressed for school. Then I found him in the bathroom throwing water at the cat!! ! So much for my "happy" morning! Anymore, this is a daily happening with him. Am I losing it now?? There are days when he looks at you with such a blank stare I am not sure he is in there! He has been dx with Low Functioning Aspergers..ADHD and Fetal Alcohol Syndrome.
I am not sure where we stand on what his comprehension level really is. Can anyone out there relate to this or is it just me? He can NEVER be left alone as he could not be able to take care of himself, also he depends on us to entertain him most of the time even though he has all the electronic devises he could ask for. When he is done with them...he doesnt know what to do!! !
Please help or advise me if you can!! !! !
Diana

I just want to say well done for looking after your step-grandson in what appears to be difficult circumstances. I think you should enquire about receiving some sort of respite from your situation or the services of an outside agency if the situation is not improving.
Sorry I have no relevant experience but I feel for you.

Thank you again Alex!! ! I so wish you much luck. I believe that you have a good grip on things for yourself!! ! Thank you again!!
Diana

welcome to wrong planet, diana =)

in reading your post, the first thing that struck me is that your grandson may not really fit the asperger's diagnosis if he is having that many issues. functioning labels like "low functioning" arent generally used with asperger's, they are used with classic autism tho. and while asperger's and classic autism are very similar to the point of being indistinguishable at the high functioning end of classic autism, those who fall into the lower functioning end of the spectrum are not usually diagnosed asperger's.

you will find that children with asd (autism spectrum disorder, it includes both asperger's and classic autism) often do not respond in the typical manner to rules and consequences. they are usually very logic driven, tend not to follow rules they do not see the logical reasoning behind, and sometimes the threat of consequences do not deter their behavior. you cannot expect them to respond to the same discipline that typical children do, it simply doesnt happen.

autistics often have what are called "special interests", those are topics/hobbies/etc that they delve into very deeply, usually becoming incredibly knowledgeable or proficient in that interest. they also require decompression time, especially if they are in social situations like school or work every day; socialization can be very taxing for autistics. these interests are sometimes one way they relax and recharge themselves after social interaction. i mention this because the taking away of his favorite toys and all his electronic devices, if some of these things are his special interests, may be the last thing you want to do. without their methods to decompress, autistics have a harder if not impossible time self regulating their emotions and behavior, and then you would see more severe and worse behavior.

the comment about the waffles is par for the course for autistics =) they say what they mean and mean what they say. they dont pull their punches and tact is often not part of their conversational skill set. they generally dont mean to be intentionally rude or hurtful, they just naturally lack the "tact filter" that NTs (neurotypicals, those without autism) usually develop. this goes along with their usually literal interpretation of what others say. this is something that we just need to understand =) you can work with him on learning to be tactful, but its something that some autistics never really do, either because they are unable to or because in their mind, not telling the whole truth is lying.

i hear what you are saying about the self care skills, and it makes me want to ask two questions. first, is he refusing to do the brushing, bathing, etc, or does he just not care and so not do it? and second, does he give any indication as to WHY? self care deficits are common in those with classic autism, things such as toileting, bathing, hygiene, etc. they can also be an issue for those who have sensory problems, and sensory issues are really common in those with asd. for those with sensory issues, showers can feel like needles, minty toothpaste may feel like fire on the tongue, etc. i would encourage you to investigate further into the self care issues, and also see if sensory issues are part of his diagnosis at all.

i cant promise that everything ive said strictly applies to your grandson, but its a general description of common autistic traits. i would suggest you and your husband start reading, and reading, and reading. do some searches here on the forums for specific issues you are seeing, or just go back through posts and read until your eyes bleed =) check out the books listed in the sticky thread at the top of the parenting forum. a good place to start is Tracker's ebook, he is a member here who wrote a book for parents and made it freely available, you can download it at http://www.asdstuff.com/ . and here are some websites that i myself find helpful, from fellow parents:
http://www.welcome-to-normal.com/ this is a website from another wrong planet member, Caitlin
http://www.hartleysboys.com/
http://momnos.blogspot.com/
http://life-with-aspergers.blogspot.com/

so thats my book for tonight =P i commend you and your husband at trying to give your grandson a stable and loving home. its probably going to be a pretty hard road, it can be with autistic children, even ones without the rough start this boy had, but there are joys to be had just as with any child. all kids have their challenges, we just have to figure out what works for each child to help them be their best. it just takes a lot more investigation with children on the spectrum, but it can be done. keep coming back to wp tho, this is a great resource and ive gotten tons of help here.

Welcome DianaB! It sounds like you are going through a lot!

I don't have advice for you, but I can share my experience..... My son is 11. Ever since he was a baby he didn't react like his older brother. I would give consistant consequences and it would make things worse. Not temporarily, but just worse. I took parenting classes, read every book possible - I was at my whits end, we didn't know what was wrong and what was happening.

In 08 the Dr sugested Aspergers and a mood disorder, but I never really gave the Apergers much thought, instead focusing on the Mood Disorder. Last year in about April, the Neurologist told me to stop looking at meds and start researching Aspergers. I ended up here and have learned SO much. Our lives are so much better and more peaceful now. How I parent today goes completely against my grain, and I really struggle. Basically, if something is reasonable, I let him have his way. What I find is that he has all sorts of issues that he didn't even have the words to tell me about. So he was constantly reacting. I started writing on a calendar everytime he melted down, where we were, what was happening, had he eaten, was it loud, etc.

What I found is that he has a lot of sensory issues and anxiety that he never comunicated. I have started piecing together what was bothering him and lo and behold.... much more peace.

BTW - Aspies for the most part don't naturally have internal editors tell them what is nice or not nice to say. So you can't take insults about cooking personally. However, you can teach him how to handle when he doesn't like a food. We have to have pretty thick skin around here.

There is a good bok written by Tracker, one of our regular contributors. He is a young adult and is doing a great job of translating what is going on for our children. you can download his book for free by going to www.asdstuff.com.

Sorry, I don't know how to do the quote here, but quoting "azurecrayon"

"you will find that children with asd (autism spectrum disorder, it includes both asperger's and classic autism) often do not respond in the typical manner to rules and consequences. they are usually very logic driven, tend not to follow rules they do not see the logical reasoning behind, and sometimes the threat of consequences do not deter their behavior. you cannot expect them to respond to the same discipline that typical children do, it simply doesnt happen."

Any more thoughts, examples of this, azurecrayon? What does work? (My children are grown now but I'm looking at everything backward, trying to see what I did right, and what I could have done differently.)

Welcome, Diana! I'm here to offer hope.

When my son was 8, he was suicidal, and went into rage attacks, where he hit and kicked me. He also put a lot of holes in the wall. At the time, I couldn't see past it. (Though I can't recall him ever hitting me when he was 9, the behavior was unbearable.)

Much of what I learned was on my own. I wish I could remember the name of the book, but there was a book that suggested putting behaviors into 3 baskets. (I think the book was about explosive children.) Basket A - safety issues. Basket B - health issues. Basket C - things that don't really matter!

It suggested that you deal with one basket at a time. Safety issues cannot be compromised. If safety is an issue, anything in basket B- teeth brushing, etc. can wait until you get Basket A under control. (although I understand that B is important.)

Basket C, especially at this time, means keeping his room clean, and any other number of things that irritate you and you would expect a typical child to conform to, but aren't necessary for safety or health. (Such as what he chooses to wear, how he spends his free time, etc.)

I agree with the person that said give all his computers, electronics back, and don't use them as behavior control. Throw out all the rules you'd use with the average child. If it doesn't work, give it up! (And that is hard to do!)

Yes, read all you feel like about ASD but pace yourself. If you can, get respite care. You need to take care of yourself so that you have the energy to take care of him. (I didn't do good at this, wish I had!)

How did my very troubled son turn out? He's 21, and a real joy to be with. He's bright, mature, an independent thinker, and very respectful of adults. He loves his Momma. There is hope!

It has been years and years, but I'm pretty certain this was the book:
The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross W. Greene

Private Message me if you want, I'm a great listener and I am willing to share what worked with my son. Believe me, I had little hope when he was 8. But it can get better!

Hello, and welcome to the forums.

For starters, I would like to personally thank you for taking your grandson in and helping him. I am sure that it isn't the easiest thing to do, but the kindness and help from people like you are what this world needs more of, and while your grandson might not thank you for it, allow me to thank you on his behalf.

Also, as mentioned twice, I do have a useful book available for download. Either click the links in my previous post, or click the link in my signature. It is designed for parents (or grandparents) who are new to the diagnosis, and filled with all sorts of questions such as, "How do I deal with my child!" It isn't going to answer every last question that you have, but it does provide a good foundation of knowledge for you to build upon, and it will help you to understand your grandson much better.

Beyond that, you need to keep an open mind going forward, and be willing to re-evaluate your methodology and child handling processes. A lot of advice that is out there is based upon what works with 'normal' children. Your child is obviously not normal, and as such, most of the 'common sense advice' that is out there makes absolutely no sense when dealing with your situation. And some of the advice that will help your child will seem silly because it isn't what you are used to. But keep in mind that since your child is different, you will have to do things differently, and that may mean abandoning a lot of preconceived notions that really don't help your child, and can often be harmful to him.

So, all that to say, I would advise that you take a few hours to read the book, perhaps read it twice, and think about it for a little bit. Once you have 'digested' the information, feel free to come on the forums and ask for more clarification and advice. Unfortunately, I don't get on the forums much as I am just finishing up my master's degree, and my projects, job hunt, and video game habits are keeping me occupied. But I do try to stop by when I can, and I will gladly offer clarification and explanation about anything that was not adequately covered in the book.

Good Morning!
I have just sat and read all the replies to my post. All I can say is thank you all so very much!! If I could I would find you and hug each and everyone of you!! ! I can honestly say there is a small dim light at the end of the tunnel!! I also want to thank you for the kind words and support for caring for him. My husband and I have been married for 5 1/2 short years (we are older) so this is something we were not expecting to do, but I must say I would not change a minute of it!!
I am not sure who to thank first here. So again I can only say thank you to each of you!! I have just downloaded the book that Tracker has suggested...so I will be sitting here in my quiet day reading. I must say I loved the idea of classifying problems into baskets. As I sit here I can already see that a lot of my concerns can go into basket C.
The thought of our grandson not having Aspergers is a thought that I will take with us to the therapists office. I have read so many articles on Aspergers and have not yet seen our grandson in a lot of the "symptoms" they list. I keep reading about high functioning Aspies. I am the one who stated low functioning as his IQ testing has left him at the boarder line of being mentally ret*d. He has such a difficult time in school with basic tasks such as telling time, writing a complete sentence, reading as he is dyslexic. However, he seems to really enjoy learning about bugs and insects. I have purchased many books on bugs in the past 8 months just to get him to read. Right now he is on a 1st to 2nd grade reading level (and thats pushing the 2nd grade). I work with him daily with reading as I just feel its so important to be able to read. My biggest concern is how much is he actually comprehending. That can always be determined as we go along. (Hence basket B )
As far as him having a special hobby, that he does. Right now its anything to do with jets, airplanes or anything that flies!! Some days I could just scream if I hear the word "JET". However, we have bought him many books and toys that are related to that so he does have something to play with.
I can also see where taking items away from him isnt working. I now understand why I should not do that as well. However, what is a consequence for poor behavior? What will fit him as far as punishment, or do I opt out of punishing him for things that go against safety or hurting others?
Okay so I have written enough for now...I am off to a quiet corner to read as I have just put him on the bus for school. Thank you all so very much for your replies...I am sure I will be back with more questions and support. And, hey bookworm..thank you for your kind offer I will more than likely take you up on that!! !! ! I feel like I am home being with you all!! !
Diana

Its much better to remove the word "punishment" from your thoughts or words. Sometimes my Aspie (short for Asperger's) looses control. Basically its sensory overload, being Aspie myself I completely understand this. When this happens we offer him squeezes which is placing pillows over him (not on his face) and laying or putting some of our weight on the pillows, we also do this with my Autie (short for Autism). We also offer the trampoline (we have an indoor one...they are relatively cheap) or we tell him to go to his room where it is quiet and he can yell, stomp or whatever he feels to express himself. There are times when we have to physically put him in his room but we dont call this or consider this punishment. There are times when you have to use consequences but make sure that these do not involve taking away very important things. Just something simple like no ice cream tonight if you dont stop pinching your sister. Also what works really well for my son is to "show" him, verbally ,how things he does affects others. Try to relate something that upset him to what is upsetting to you. As Aspies we have a tendency to think inward. Like if my son is teasing his sister by holding a toy over her head I would remind him of how he felt when a neighbor took his video game away and would not give it back. This way he can relate to how his sister feels. Most of the time kids with Autism want to follow the rules but if they dont understand the rules this makes things very difficult and this is where a lot of the discipline problems arise. Make sure that things are clear. Dont use any double meanings or sayings like "Im sick to death of this" or "the dog had to be put down" (My son heard that one on tv and was very confused) These illogical sayings make very little sense to an Aspie and can also be frightening as the child might actually think you are going to die. Also keep verbage simple. Dont go on and on about something because its too much information to take in and can also agitate the sensory system. If you want your aspie to clean his room dont make broad statements like "Your room is a disaster area" you would have to say "You need to pick up these toys and put them in the toy box." We have color coded bins for my Autie and she knows which toys go in which color bin and which ones go in her toy box. She likes things to go where they belong and she loves patterns and colors so in this way she actually enjoys cleaning. You might want to try a schedule which involves pictures with the words written on the bottom....this also helps with reading. Kids and even adults with Autism like to have a more ordered and scheduled life. This makes us feel more secure. We also like to know what is coming next....most of us do not care for surprises.
From the few things that you have said your grandson sounds Aspie to me. Its very typical for an aspie to want to talk about their special interest over and over and over and over! Also the story about the french toast made me laugh....very typical.
Glad you are reading Trackers book. Hes a very smart insightful young man. Also you may want to look into getting your grandson some Occupational Therapy to deal with his sensory issues. I have a friend who is raising a child with fetal alcohol syndrome and fetal drug addiction and they do tend to have serious sensory issues just as many people do with Autism.
So glad people could help you here and glad you are there to help this little boy .
Just one last thing. I found a computer program that really helped my son to learn to read. It is only available in the UK but we bought it when we still lived in the US and it was actually cheaper than the copies we found on ebay. They are called Nessy Games. There is a spelling/reading program and a typing program. Just thought Id mention that.