Son just diagnosed. We're lost, need HELP!

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I posted this in an older discussion too, but then started thinking that I don't know if anyone is still reading that one and I could use help/advice asap! Thanks

My oldest child(my 4 yo) was just diagonosed with aspergers underlying with adhd. We are at a loss with everything with him. We want to do everything possible for him to have a happy childhood and to grow up happy and healthy and everything else a parent could want for their child. We also have a younger son who is 18 months. We are having a hard time finding place to work with him where we live and also we have really no clue what to do with him. I know that sounds bad, but thats where we are.

My son meltsdown easily which is probbally the only thing we know how to handle. We can help him stop the meltdowns. But we have found no effect way of discipling him. We have tryed everything and after reading the posts of the aspies people on here I think I have a better understanding of how he feels, but not how to discipline him. When hes angry with us, he lashs out by screaming, growling, breaking things, and even poops and pees on his floor and smears the poop into the carpet, onto the walls, his bed, etc... We have no idea how to stop this behaior. (The using his room for the bathroom most of all. We can get him to stop for 3 weeks at most, but then he goes right back to it.) We have a giant wooden gate at the top of the stairs that blocks our room, his room and the bathroom off from the rest of the house because he will get up and wander around the house during the middle of the night and get into anything and everything. We have even found him in the garage with the garage door open in the car with the car started(it was a standard and he is 4). We are at a loss for what to do and will take any help and advice that anyone can and will give us. Please help us lost parents find a way to be fantastic aspie parents.

Hi, there. Could you give us a little more info? like, what gets him angry? Hows your family doing besides him? theres anything more we need to know?...

Im new here too, and im not even sure if i even have aspergers or not... but i thought those were some basic questions that need to be asked, even if i can't go further on the issue maybe some other guy here could understand your situation more clearly and can give you some advice.

Last edited by tha_tempest on 01 Jul 2009, 12:57 pm, edited 1 time in total.

Where do you live? Many families have relocated to my Upstate New York community between Syracuse and Albany, New York as there is an outstanding facility called the Kelberman Center for Autism. Your children are at the age where they would greatly benefit from all the exceptional programs and services that the Kelberman Center provides.

The Kelberman Center has an exceptional preschool program (the Promise Program), an Awesome Summer Camp program for kids ages 5 to 15 years, programs of support for parents and many, many other programs and services that provide care and assistance across the lifespan. You can
check out the website for the Kelberman Center...just GOOGLE: KELBERMAN CENTER FOR AUTISM


You need to find a well trained, caring professional in the mental health profession who understands children with Autism and Asperger's Syndrome.

Best of luck to you!

Discipline for aspies rule one: Make sure they agree that they've done something wrong, you might want to brush up on your sociology a bit to understand the whys of social conventions, if you just say what the rule is and you get questioned why its a rule you should have an answer.

With the bathroom problem: I'd recommend explaining the principles of hygiene and the link between microbiology and diseases, anyone else got any ideas on this one?

Her child is FOUR years old...I seriously doubt that the child would understand any principles of hygiene and the link between Microbiology and diseases! With children, you have to "keep it simple."

Then explain it simply, the core concept: mess breeds bacteria, bacteria makes you sick is not a hard concept.

To give you guys more information:

He gets angry when he is disciplined(punishment is usually a time out, sometimes we try and get more creative. Creative ones are usually more fun and were are trying to do those more. By fun I like for example, once he has continually climbing the furniture and jumping of a wall ledge we have in the house. The playground across the street has a small rock/climbing wall. We had him climb the wall a couple of times and explained to him that playgrounds are for climbing not furniture.) but after reading on here I'm begining to understand why he gets angry. We have been doing more of I am the parent do what I say without talking and explaining it. I just got on here for the first time last night, read that and it is already working somewhat. I think just somemore trial and error to figure out how to talk and explain just right. The hard part of that is keeping is focus. It is very hard for him to focus on you talking to him one on one. He is very easily distracted, a little more so than some I think by reading on here because he has underlaying adhd. If I am wrong, I am sorry. I am trying very hard to figure it all out. Usually he goes to the bathroom in his room when he feels we put him to bed too early. We put him to bed between 7 and 730 everynight. That is the point where he is getting tired to the point that he screams and growls at us no matter what we say. Sometimes hes fine, sometimes not. He stopped doing it for 3 weeks, stared doing it for 2 nights and then last night didnt do it. He got up this moring and when the baby woke me up and I went to get them, he was in the bathroom and yelled proudly that he was going poop. So I think the trigure is bed, but sometimes, I'm not sure. He also gets angry when he is building something and his little brother knocks it over. I understand that the baby is messing up his ordering and his structure. I try to keep the baby from doing this, but it usually happens when I'm out of the room. I also try and explain to him that the baby doesnt know better and as he gets older he'll stop that, but right now he just wants to do what his big brother is doing. He and his little brother are extremely close.

My AS son is an extremely loving, sweet, wonderful little boy. The best little boy you could ask for. I am worried about his starting kindergarden in the fall. I also worry I am not doing enough to ensure his safety. I dont want to be overprotective, but hes is so impulsive and gets into so many things. I dont want to be overprotective, but I dont want to be underprotective. I also want to try and find a way to get rid of the gate at the top of the stairs. We tried taking it down for a week. We slept on the couches just in case. He was downstairs at 4 every morning. Before we put the gate up, he woud get up and destroy the house, get into cleaning products and my husband found him in the car one morning with the garage door open and the car started(we drove a stick at the time).I really just want to do whats best for him.

Our family is doing fine otherwise. We are relived to have a diagonsis and not just know that something is wrond but we dont know what or how to help. Now we just need to know excatly how to help. Is there any books that I should read?

We live in upstate New York. We're a military family and live on Ft. Drum about 1 and a half north of Syracuse.

Living on a military base, do your children attend local public schools, or are there schools on the base? If you are considered part of the New York school system/early intervention system, you need to get hooked into that as quickly as possible. The district evaluations take a long time to put in place, and you want to get his school placement, with appropriate services, put in place asap. He will be entitled to early intervention services until he starts kindergarten, and there should be a transition meeting in the late winter/early spring to help ease the transition from early intervention to kindergarten. In New York, by virtue of an ASD diagnosis, your son will be entitled to some services - I believe speech 3x/week being among them. There are also free advocates available to help parents with IEP meetings in NY.

If there are separate schools for children on the military base, you need to get in touch with the military school district and find out about that system asap.

As far as books go, I found the O.A.S.I.S. book and Tony Attwood's book very helpful when I was first trying to learn about Asperger's.

We have had him in the school system since he was just barely 3. He started out in a speical ed prescool and then was put out ot the school when it was time to retest him. On the retest he scored an average iq and on the first test he scored in the "ret*d" range. When he was put out of the preschool, they continued his speech, ot and pt. We got him into headstart, which ended for the summer at the beginning of June. We got the diagnosise just 2 weeks ago. I went to the school board to try and get him back into the special ed preschool for the summer because he does alot better when he is in school. They wouldnt do that becuase he starts kindergarden this fall, but they upped his speech to 5x's a week and are going to have a speical ed teacher come to the house 2x's a week until the school starts. That is along with continueing his ot and pt. These will all also continue when he starts kindergarden. We have his IEP in place and the school and the school board both have copies of his evaluation and diagnosis.

I guess I'm mostly scared because I see the other kids his age noticing he's different and startingto shy away some and that he notices it but doesn't know why. It hurts me to watch that and I don't want him hurt. I'm also scard of how he will do accademically.

On another note, my AS son has to have his tonsils taken out in October. How is he going to do with this? How should I prepare him? I need to know anything and everything I shoud do for him with this. Thanks all.

Look on the bright side... you know what is wrong with your son, and can act appropriately to help him. I wish my parents could have known what was wrong with me

Safety first, then discipline. I would leave the gate up a little longer. You're not being overprotective, rather addresssing his special needs. Tme outs don't always work for my boy either (he's 4 1/2) and "because I'm the parent" is starting to lose its power too. The main thing for us is to always remain calm and in control, although it's certainly not easy. I'm a big fan of natural and logical consequences. For instance, if you throw a toy, you lose that toy for a specified amount of time. I feel that it helps to drive the point home better for the child. I'm not so sure that fun discipline is such a good idea because it may simply reinforce the bad behavior (I climbed on the furniture so now I get to go to the park). I totally understand the anger your son shows when disciplined, my son can be the same way, but it is vital for you to be the one in control, not the other way around. Consistancy truly is key. It will definately get harder before it gets better, but once your son begins to understand that bad choices will always get bad consequences, and good choices are rewarded, things will likely calm down. There is a very fine line between being sensitive and being a pushover that I think all moms struggle with and it's a constant learning experience.

It sure ain't easy and you've got lots of good company here. I also live in NY, near Syracuse and I think we are very lucky to have all the resources that we do. We don't go to any specialty centers (can't afford them), but our school district has nearly bent over backwards to accomadate our little guy. I've heard wonderful things about many districts in NY from LI to Lake Placid, to Buffalo. We're on the waiting list for services with University Hospital, and are very optomistic about the future, for now at least .

My son is 5. A few things I have learned and we do.

First we have chains on all the doors. We started this the day he moved to a real bed and it keeps him from wondering outside the house or into the garage. Also, we have chimes on all of our exterior doors so you can hear if he opens it.

Second, my son doesn't like to go to bed either (I know this is very common for Aspies) So he goes do his room around 7:30 and we let him play whatever he wants in there, as long as he stays in his room. He gets one "out" for ONE potty time and this gives him the freedom to save the one out and not abuse it for other things. It has been a good compromise.

I have realized his order and space are extremely important and he (and I) can't understand how important it is to his sense of peace that I would let his sister (or anyone else) wreck something he worked hard to organize. It seems like he should "just understand" that his sister doesn't know better than to wreck his things, but I have realized it goes MUCH deeper than that. So as a compromise he gets a couple of "safe zones" where if he sets up an order of something, tower, etc. that his siblings are NOT allowed to enter or go near that place (maybe in his room?) We have a corner of the downstairs we can close off that is his sacred place. he knows if things are set up in other places they are free game to be wrecked, messed with etc. This took a few melt-downs when we first started, but when he saw me defending his "safe place" he came around. It has helped a great deal for him to have a "safe place" for his fixation (animals) and organization OCD. Also, we have tent set up for him to calm down in when he really melts down. This is different from time-out. Sometimes he will escalate so far, that discipline is not in the picture until he is calm enough to recognize the problem with his actions.

Reward/punishment. We started a marble system about 6 months ago and it works wonders. At first you start rewarding him and going crazy for even the smallest things. You went poopie in the potty...marble. You didn't pee in your room....marble. You said something kind to your sister....marble. We made a HUGE deal out of everything (you feel like kind of an idiot at first dancing and singing over such little things, but the kid LOVES the affirmation.) Also, with marbles, you can use it for negatives. You hit your sister....you lose a marble. etc. I put lines on the marble cup (a see through cup so he could quantify his progress, again very important) Each line has something he can work for. At this age its a dollar amount of something he can save up for, but you can also put lines for things that are important (one line for toy car, etc.)

Make yourself a pest to the school system. He is absolutely qualified for federal services (the good thing about an Aspergers diagnosis) and so they are required to give him services. Find the special ed coordinator for the county and make yourself known. Have him tested for ALL services...speech, OT, behavioral. Keep pushing.

Hope that helps.

Kat

My son is 5. A few things I have learned and we do.

First we have chains on all the doors. We started this the day he moved to a real bed and it keeps him from wondering outside the house or into the garage. Also, we have chimes on all of our exterior doors so you can hear if he opens it.

Second, my son doesn't like to go to bed either (I know this is very common for Aspies) So he goes do his room around 7:30 and we let him play whatever he wants in there, as long as he stays in his room. He gets one "out" for ONE potty time and this gives him the freedom to save the one out and not abuse it for other things. It has been a good compromise.

I have realized his order and space are extremely important and he (and I) can't understand how important it is to his sense of peace that I would let his sister (or anyone else) wreck something he worked hard to organize. It seems like he should "just understand" that his sister doesn't know better than to wreck his things, but I have realized it goes MUCH deeper than that. So as a compromise he gets a couple of "safe zones" where if he sets up an order of something, tower, etc. that his siblings are NOT allowed to enter or go near that place (maybe in his room?) We have a corner of the downstairs we can close off that is his sacred place. he knows if things are set up in other places they are free game to be wrecked, messed with etc. This took a few melt-downs when we first started, but when he saw me defending his "safe place" he came around. It has helped a great deal for him to have a "safe place" for his fixation (animals) and organization OCD. Also, we have tent set up for him to calm down in when he really melts down. This is different from time-out. Sometimes he will escalate so far, that discipline is not in the picture until he is calm enough to recognize the problem with his actions.

Reward/punishment. We started a marble system about 6 months ago and it works wonders. At first you start rewarding him and going crazy for even the smallest things. You went poopie in the potty...marble. You didn't pee in your room....marble. You said something kind to your sister....marble. We made a HUGE deal out of everything (you feel like kind of an idiot at first dancing and singing over such little things, but the kid LOVES the affirmation.) Also, with marbles, you can use it for negatives. You hit your sister....you lose a marble. etc. I put lines on the marble cup (a see through cup so he could quantify his progress, again very important) Each line has something he can work for. At this age its a dollar amount of something he can save up for, but you can also put lines for things that are important (one line for toy car, etc.)

Make yourself a pest to the school system. He is absolutely qualified for federal services (the good thing about an Aspergers diagnosis) and so they are required to give him services. Find the special ed coordinator for the county and make yourself known. Have him tested for ALL services...speech, OT, behavioral. Keep pushing.

Hope that helps.

Kat

Safe zones - yes! I forgot all about that. We do that too and it works wonderfully. It also helps to avoid sibling resentment. And we also have separate places for time outs vs. meltdowns. It is completely innefective to discipline a meltdown and usually it just adds fuel to the fire. Good ideas javabuz.

My first and most important tip for you is NEVER EVER underestimate the intelligence of a child with Asperger's Syndrome. If you pull out the textbooks and start explaining the microbiology of hygiene, you'll be surprised by how much he picks up.

That is the SINGLE BIGGEST problem parents with Aspie children need to tackle. DO NOT underestimate the child, especially his/her mental capacity. They are not typical children. Their minds do not operate like typical children. They have advanced capacity for learning academic topics, and almost no inherent social skills. Take advantage of this to teach them what they need to know.