Hi, I am New and Need Support regarding my 5 Year Old

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Hi everyone. My name is Ali and I am a parent to a little boy with Aspergers. At least we are 99.9% sure this is what our son has. We have been told by our pediatrician as well as a clinical physcologist. He is currently awaiting admissions to a specialized center that tests for Autism and Autism Spectrum Disorders. The reason I am joining this forum is because I am in desperate need of support and understanding with this illness. I have absolutely reached the end of my patience with my son. I get so frustrated and discouraged everyday trying to find a solution to help my son with his behavior.

Somedays it feels as though it is tearing my life apart. The positives in my life is that my husband and I are best friends and we support each other 100%. But sometimes I feel as though he does not understand the frustrations I go through on a daily basis with my son. I am a stay at home Mom and am around his behavior constantly. I am honestly so tired, I feel as though I cannot talk about it anymore to anyone. It seems as though every minute of my day is trying to get through the next minute and not lose my mind. Additionally, my daughter who is 15 was diagnosed last year with Bi-Polar Illness. Between the two of them, I am lost. Well, this is a little bit about me. I hope to get some answers to dealing with the frustration that goes along with Aspergers. Thank you for your time and hope to get to know you soon.

Hi Hopeful! You came to the right place. Welcome to Wrong Planet! It sounds like you are at the end of your rope, so I am glad that you have reached out to others. I have found tremendous comfort and support from Wrong Planet. I found that while my family and friends are supportive of me and my son, they just don't understand 100% what I am going through, so it helps to chat with people who do. It is wonderful that your husband is supportive. That is a plus.

Do you mind sharing specific examples of some of the things you are struggling with? Every case of Asperger's/Autism is different, so all of us have different struggles. That is why it is so wonderful to share here to get much needed input.

Try to take a deep breath and hang in there!

Hi, thank you for getting back to me. Sure I will try to explain a little more. For example, this morning I woke up to my DD crying because my son has kicked her in the throat. He at first blamed it on her, that she was bothering him, however, I knew he was not being truthful because I had heard her asking him to leave her alone. He will constantly follow her around and pick at her for no apparent reason. He normally does not say he is sorry when he physically hurts someone (including our dog). After that incident, within a few more minutes he was asking me if he could call ppl on his new phone. We got a new cordless phone, which he believes is a cell phone, and he likes to carry it around on him like it is a cell phone. I tried to explain to him that we cannot use the phone constantly and we have to leave it on the charger to have it charge throughout the day. He did not like that answer, he wanted to put it on his pants and carry it around with him and when i told him later we could, he kept asking when? After breakfast? How about after a tv show, in a hour? and the inquisition continued until I gave in to him and let him have the phone.

My son has almost all the typical symptoms of Aspergers, which I can provide a list below of some of the specifics. Prior to him being on medication, he was absolutely intolerable to live with. Any type of punishment or positive re-enforcement we tried to use on him had not effect. We used to have to hold him down so he would not kick or hit us when he got frustrated, which was about every other minute of the day. Nowadays he is doing better with the physical aspect of things but his attitude and behavior has gotten worse, he has become much more smart alecy and confrontational. When he gets in trouble he has a major meltdown and needs to be held in order to stop crying or being mean. And I mean literally, you must stop everything and anything you are doing and hold him. His newest negative behavior we have noticed is he is constantly lying about things. Just out of no where, is this typical for an Aspie child?

As I said before, he will be going to see a specialist within the next week or two for an official diagnoses. My only concern is after he is diagnosed, then what do we do? The medicane he is currently on (Respiradol) seems to help with the aggression and sleeping, but what about everything else? Honestly, there is so much I could tell you about, but I would be typing for a week. Like you mentioned, I am at the end of my rope and somedays I feel as though I am losing hope. I told myself today that i need to get some support from somewhere with people who understand what I am going through (what my family is going through). Well thanks again for your welcome, I have provided a brief list of some of my son's characteristics:

anxiety
social akwardness
constantly going
telling people what to do or how to act
cannot watch tv and play at the same time
does not like loud noises or distractions
lying
dressing up and playing batman (obsession)
playing with money
naming presidents on bills
cannot have any change from the norm
does no like any social settings
has a hard time making friends
clicks fingers when frustrated
major meltdowns
threw up Christmas eve because of anxiety that Santa was coming the following day
does not like anyone to talk when he is watching a show
constantly asks the same questions over and over if it is something that he wants
does not like germs or like drinking or eating after anyone
likes to line up things and put them in order (like straight lines or patterns)
shows little affection
does not realize if you are getting angry with him
prior to medication would hit and kick
punishment of any kind does not change behaviour
picks on ppl constantly
does not know when to stop sometimes
likes to act like an adult, have cell phone, carry tools around, pretends he goes to work
cannot entertain himself, follows me around constantly
does not look at ppl in the eyes when he talks to them
is very creative, likes to color and draw and write letters

Is your son in school of any kind yet? Not knowing where you live, it is hard to know what to expect in terms of programs and support from the school system. If he is in school, working with the school to figure out what kinds of interventions work, and how to keep things consistent between home and school, could really help. Again, depending on where you are, you may qualify for an aide for him, which could also help.

As far as the asking things repeatedly is concerned - does he continue to ask if you give him an answer he can relate to? Like if he asks when he can hold the phone, and you tell him, for instance, "after lunch," will he keep asking before lunch? Sometimes kids keep asking because they need to know what to expect. If he keeps asking even after you've answered his question, do you know whether it's because he's "stuck" on the question, or because he doesn't remember the answer? If he's stuck on the question, you can try re-directing, but I wouldn't be too optimistic about it, unless you can redirect to something in which he has a significant interest. If he doesn't remember, maybe you could use his love of drawing to have him draw a picture of when he'll be able to carry the phone, and that might help him remember. Plus, his picture might be able to serve as a pictorial reminder.

The holding him to calm him is something that lots of kids need. It's partially a sensory issue, for some kids. That part wouldn't concern me nearly as much as the aggression that precedes it. Clearly, you need to work on that. Punishment, as you've discovered, doesn't work. The connections that you expect your child to draw between the behavior to which you object and the punishment you mete out are not connections he will make. To him, they are each isolated events, kind of hanging out there in space. You need to talk to him about the things that are not permitted (hurting other people, the fact that kicking, striking, punching people is hurting them - he might not understand that), and why. If what constitutes hurting is a problem, you might have to have a rule about touching someone else without permission. Meanwhile, you will need to watch your son carefully. It is likely that you will be able to anticipate aggressive behavior before it happens - many children show signs of distress before their behavior becomes overtly aggressive. If you can "catch" it then, you might be able to prevent it. At least, you should be able to get any other children out of harm's way. By watching what's triggering your son, you may be able to figure out what is going on for him, and how to intervene effectively.

Lying is not really typical for an Aspie child, especially one so young. When they do lie, it is usually about something very concrete, like saying they brushed their teeth when they didn't, because they don't want to. And the lies are usually very badly done - very easy to detect.

Having two kids with significant special needs is hard - try to take care of yourself as well as your kids.

Ali, I agree, it is great that you are posting, and I hope this forum can be a valuable resource.

I have 3 kids, two that have ASD. My son, 7 has Aspergers, and my daughter who has not completed diagnosis will most likely fall more in the the autism spectrum - though high functioning.

I completely understand what you mean with the behaviors. It is so hard adjusting to this socially different style of life. We are not able to go to things that most other families can - for example, even a simple movie theater - my son is at the point where we can bring him, but my daughter would simple make too much noise and run all over the place. Actually my son is on ritalin for the ADHD part, so really that is what keeps most of the hyperactivity / impulsiveness in check. I suppose if he were not on meds, he would be making noise and running around too - even at 7! He still does some wacky stuff when the meds wear off at night.

I remember getting calls from my wife in tears when he was young - all kinds of things -destroying things, poop smearing, running off.

I think it gets a little better with age, and the key thing is educating yourself - like finding methods that work for you of keeping yourself sane / in control, but also methods of dealing with behavior in a good way. 1-2-3 timeout is good. We use it, the school uses something similar. This video is what we use - though we modified it somewhat, keeping it positive as much as possible.

Reward systems are very important! Find key things to have him earn. For our son, it is MARIO (video game). Just be warned it does not always work - but works enough of the time. I think it is important to keep things positive there too - make it REWARD, not PUNISHMENT -- we very rarely take things away that were earned!

On the topic of punishment, at public school my son would get pink slips 2-4 days a week for behavior issues! Getting past the idea that pink slips are crazy for kids this age, they did NOTHING for him, did not stop any of the behaviors. The school just did not understand his condition. (undiagnosed at the time)

It was definitely a fight to get him help. He did well academically so they did not want to go the IEP route. We fought for a long time, many meetings, school advocates, one TEAM meeting we had a psychiatrist, psychologist (20 yrs aspergers expert), 2 advocates (1 that was a team char) , and a special ed teacher - still no IEP.

Eventually they gave in, and he is at a school that specializes in Aspergers kids - it is AMAZING!! ! He is doing so well, and actually likes school. There are still behavior issues, but no pink slips!

Not every IEP experience is this difficult, but I hear that many are. Make sure you educate yourself, and it is a really good idea to at least talk to an advocate if you can.

I will stop rambling now, but I hope you find help and hope here.

I wanted to throw another thing in - something key - and still is - is staying calm - I mean VERY calm - I have a hard time with this, but it works amazingly. If I start having even a SLIGHT edge to my voice, it is like that's what my son is looking for - he will escalate even more. But if I talk mono-tone, or calm, and stay that way, no matter what is happening, it usually (keyword usually) works very well to keep things reasonable.

I read an interesting mini article once about whispering and I have to say it works well! It gives me most of that physical feeling that yelling would, but I am not yelling at the kids. Whats even better is it is actually more effective than yelling. At this point they usually ignore me when I yell. Whispering still works. It just does not work if it's too loud of course...

Risperdal for a 5 year old I would question that doctor's decision. You can not medicate this kid for his whole life, that is terrible and he is not going to learn any good coping strategies if he is drugged all of the time.

Asperger's syndrome is not an illness. You are not going to get anywhere thinking that way. It is something you have to understand. I recommend anything by Tony Attwood or Temple Grandin, they are two good authors that generally have positive things to say.

People with AS see the world a lot different. Punishment and authority is processed differently. Many people with AS do not like external authority, but have a strong sense of self-control and self-discipline. External authority is often hypocritical and inconsistent. You need to develop self-discipline in your son by explicitly showing him everything. Lots of stories that show him how to act and the consequences for bad behavior.

Don't let him by a smart-aleck. It's a coping strategy that he has developed because he does not have the social skills to get what he wants through other positive behaviors. Some strategies: show him the right behavior, don't be confrontational, don't let him be a smart-aleck.

I would recommend you look for specialists (like social workers, occupational therapists) that can provide you with supports. There might be an autism/mental health services in your area if you check it online. Also, look in to cognitive-behavioral therapy and social stories that may be useful. Supposedly, a gluten and casien free diet can be helpful for some people, but I have no experience with the diet.

It is most important that you be positive. You will get extensive lists of "weaknesses" and "problems" if you want to, but what will it get you? People with AS are not "normal", but once you understand the perspectives that a person with AS can come from, you will realize it is a gift.

Thank you everyone for your replies and support. Yes, his behavior is sporadic, I definately do try to remain calm most of the time, but with the amount of chaos it is so hard to keep calm. We did hear about the whispering idea awhile ago, but have learned that does not work for him. When I talk normal, he asks me to repeat the question as if he can not hear. So being even more quiet I know he will not hear me. Yes he is in school. He is in K. I have been actively working with his teacher regarding his socialization and schoolwork. The strange thing about all this is when he is in a public place, around other children, he completely acts different. He is shy, does not socialize, does not particpate in activities unless forced too. He too has to hang all over the teacher and seek help for everything he does. He also will not look at any of his peers or teachers in the eyes. He is a absolute complete angel at school. My son has been tested and is not ADHD, they just believe it is severe anxiety and Aspergers. Additionally, regarding the phone, we do understand that it is quite challenging for someone with this condition to make choices. We know that simplify everything is key for his understanding. We remember asking him how school was when he first started. He would never answer us. We could not understand why this was so hard to answer, until we read somewhere that asking questions like, "did you have fun playing on the playground at school today?" was much more specific and he could answer that easily. So again regarding the phone, I just explained he could have it later, around lunch time, but he just did not want to hear that answer, he wanted it now and did not back down. I believe he does not keep asking me to manipulate me in to giving him such things as the phone, he just has a sense of urgency of needing to possess things once he has it in his mind that he wants it. I am surprised to hear that lying is not a characteristic. He definitely knows that he is doing it, he lies on purpose and normally we catch him in the lie. Why he does it, I have no idea, as I said this is very new, within the last month or so it has become more apparent. I am pretty sure the IEP route is what we will be taking, but I am not sure exactly what it is and what we have to do for it. We live in the Columbus Ohio area (I think someone asked)

Yes, tears are all too familiar, my husband and I just want to be the best parents we can be. We are thinking of taking a parenting class to help us along the way. Those of you who have an official dx of Aspergers, what happened or what was provided for you once the dx became official?

Yeah, that's pretty ridiculous - not to mention dangerous. Instead of drugging the kid into submission, why don't you TEACH him appropriate behaviors. 5 years old is WAY too young to be on any medication like that.

Thank you for your input as well. We do not agree that we are "drugging our child" We are just using the help of medication to normalize some of the aggressive behaviors. We absolutely never wanted to put our child on any drug....my husband and i were completely against it. But after a year or so of violent unpredictable behavior, we had to make some decision. We are hoping the specialist he will be seeing will help us more in this area. Maybe trying something different. Wow, I am really taken back by you all saying we are drugging our child. We are going off of our pediatricians suggestion. He does not act all "doped" up, is not lethargic and is much more active and happy since he has been on it. Maybe it is not the best choice of drug but I believe that alot of Aspie kids take medication. We ARE trying to help learn how to cope, that is why I am on here..... I was looking for support not condemnation

It seems as though your primary problem (or at least the one which you need to address first) is his physical violence.

For starters, if he is having meltdowns often, you need to find some way to deal with it. I would suggest taking a look at this thread:

http://www.wrongplanet.net/postt114815.html

Before that, I talked a bit about the neurological reasons behind meltdowns here:

http://www.wrongplanet.net/postp2387282 ... t=#2387282

The second thing you might want to look into is letting your son have a safe release for his aggression. Giving him something he can punch/attack like a pillow, bean bag, or punching bag would be a good way for him to release his aggression in a safe manner. I am currently working on putting together a book of sorts that talks about these sorts of things in more detail, but I am not finished with it yet. If you would like I can send you a partially completed book that might offer some insights.

Telling your son that he can have the phone "later, around lunch time," is probably not specific enough for him. It's very hazy, for him. He needs much more definite information - like "right after lunch." When my son was very little, he couldn't stand to see something he wanted and not have it. As I said, he was much younger, so it was a bit different, but I had to remove things from his sight (and his ability to find and see) until it was okay for him to have it. Also, if you tell him when he can have it, you have to be sure you mean it - don't change your mind - he won't be able to deal with it.

You're right about the difficulty with choices. The other thing is that when you ask questions that are very wide open ("how was your day?"), you son doesn't know how to start to deal with it - there's no "right" answer. There are so many places to start, so many places to go, how does one even begin? You can get lost before you start. NT boys can't really answer that question, either. I used to say, "tell me something good about your day." And then, "Any problems?"

Parenting guidance would be great, but don't try to get it by way of a typical parenting class. What "works" with typical kids doesn't always work with AS kids. They'll recommend that you do things that are the exact wrong thing to do. You need to take advice from people who understand kids like yours, not generic typical kids. A support group for parents of kids on the spectrum, or some other group specifically for parents of kids on the spectrum would be much better.

^^^I enthusiastically second MrTeacher^^^
When you tinker with a person's synapses, you alter who they are - something no compassionate person would ever do to someone they love. There is no medication effective for Asperger Syndrome, therefore no rational reason for using medication to treat it. If your doctor recommends medicating a child for AS, find another doctor.

I'm really surprised to hear the troubles you're having. AS in itself should not cause aggressive behavior (or lying, which we generally suck at), but insisting on rules of order that do not make rational sense to an Aspie can incite resistance. At the same time, I do not advise caving in to bad behavior, or allowing for latitude when it comes to behaving with manners and civility. Any child will run roughshod over you if you allow them too much special dispensation for being 'different'.

It does sound as though a lot of the problem here is that you need to understand how your boy's thought processes differ from yours in order to effectively communicate. Even more than most kids, an AS child needs - deeply, emotionally needs - to understand why things have to be this way or that way. The world must make sense or everything becomes an overwhelming mass of confusion and chaos. The response to that is meltdown, an emotional collapse.

Our lives are one frustration after another - order is the only thing we have that keeps us sane. The NT world is a frightening and confusing place - 'normal' people do not make sense to us, they have methods of communication we do not grasp, their behavior often seems inexplicable, as do their expectations of us, therefore interacting with them is highly stressful, as we feel (rightly so) that no matter how we attempt to express what we're thinking and feeling they are never going to get it. We will always be judged, misunderstood and persecuted for having a different point of view.

Imagine a dream in which you wake up on another planet, where all the rules of communication and behavior are strange and illogical to you. You look like everyone else, but no matter what you do, the natives all treat you as though you were being intentionally difficult and irrational. You're not insane, but you appear that way to them and they find you exasperating and treat you accordingly. You can't even explain your differences to them by telling them you're an alien, because the body you're living in was born here. Now imagine that its not a dream - you're stuck here for the rest of your life - in The Twilight Zone...

Welcome to our world...

Last edited by Willard on 22 Mar 2010, 12:50 pm, edited 3 times in total.

Sorry if my post sounded rude and blunt. I'm sure you are a great parent, you obviously care about your children. I know you probably do not want to resort to drugs, and it is a tough decision to make. I've worked with some hard-to-deal with kids, and it is a challenge, I would not know what to do if I could not go home at the end of the day.

I will say that I am more specifically against the drug risperdal. Some kids do need meds - don't get me wrong there. I have seen an adult on risperdal basically be "lost". Gaining weight, not talking to anyone, not focused on interests... it was terrible. I guess it works for some people. If you look up it's history you will actually find that it was developed under erroneous beliefs about schizophrenia.

Living with someone with AS does require a perspective shift. It's a hard thing to do. Many people who get a diagnosis go through a grief/denial stage. For some people, a "special need" diagnosis is like the "perfect child" died or a past "normal" life has been lost. I think this is a hard thing for many people to deal with. I hope you can get supports here at WP, from you family and professionals. One thing to remember is you have to be very, very positive when working with a kid with AS, negativity is not going to be liked and will be remembered longer. Try and be positive, there is lots of good that can be had.

HTH

Welcome, Hopeful, to the Wrong Planet!

As you have probably already noticed, this forum is likely to challenge you to rethink many things. I know those challenges can be hard to read and either harder to try to absorb, but I ask you to remember one thing as you read those responses: this is the way your child may see things. The adults posting those responses are AS themselves, and they are sharing how they view the world, and that will include anger, negative assumptions, and frustration. But you need to see it how they see it, or you won't be able to devise the best strategies with your child.

The good news is that our kids don't have to grow up the way the last generation did. My son is a happy and positive individual. But he was not and is not easy; "easy" has never been part of the bargain. He will not do things just because we ask him to, or believe that he should do them. He MUST buy into the plan, or it doesn't happen without a lot of misery. Which means that picking your battles takes on a whole new level of meaning when you are raising an AS child.

Some of the ideas you are going to be challenged on:

1) AS is a different way of being, not an illness. This shift in thinking is important, because an illness is something to be erradicted and controlled; a way of being is something to be understood and accepted. Once you shift into the later way of thinking, whole new parenting approaches open up to you, and your attitudes with your son will change for the better. There are things you will need to work on with your son, and co-morbids like anxiety that can and should be treated, but much of what you are dealing with just "is," and you have to see that to deal with it effectively.

2) Some things that you are seeing as behavior problems may be necessary to his ability to self-regulate and self-calm. The constant motion is one of these, as are many sensory seeking or avoiding behaviors. Stims, or self-stimulating behavior like hand flapping, chewing, or rocking are important ways of keeping on keel. If you try to suppress these things, you may win the battle, but you will lose the war. The goal, instead, is to channel. Teach him that there is a time and a place, and involve him in setting up the structures.

3) Attending school and behaving properly while there is stressful for him. As a result, he is likely to act out more at home. Understand this, and help direct him to stress relieving activities.

4) He is bothered by things we don't see and he may not be able to voice properly. Your example with when he struck at his sister was quite familiar. He can't see it from anyone else's perspective; all he knows is that something was grating on him. My son can flip out from my daughter's tone of voice. Unacceptable - certainly. But real to him? That also. Your child needs to learn strategies for coping with the annoyances in life, and he needs to have someone understand how real it feels to him. He won't understand his role in the escalation for years, and that will involve breaking down each of these situations into hundreds of small parts and explaining each from the other side. Be prepared to do that, break things down, instead of just telling him he's wrong. He doesn't get it, plain and simple.

5) AS see lying quite differently than we do. To start, they are very literal, and really cannot apply rule A to situation B in any way, shape or form. Lying at age 5 is a common 5 year old thing (NT or AS); he's still at the age where he may believe he can change reality by saying it is so. Be gentle with this, but consistent. Again, break it down. Explain what you know and see, and have him explain his side. Understand that he may missunderstand many small components of the situation. And understand that his literalness may have led him to believe that all the world lies, so he might as well, too - although 5 years old would be unusually young for that (the adults on this forum who have talked about reaching that conclusion and starting to convenience lie generally say it was in the preteen or early teen years that they did it). Overall, lying is against the nature of someone with AS. But life can teach them differently, and they are not immune to the normal developmental phases of young children. As I stated earlier, I am going to guess it's the normal developmental phase, in believing that restating the truth can change reality. He needs to learn, of course, that it doesn't, and it just makes everything worse. That is a life lesson, but a parent doesn't have to use consequences to teach it. I haven't, and my 12 year old has absorbed it qutie well.

Our kids are wonderful little gifts, but that does come with a cost. Enjoy the gifts, and work with your child - not against him - on handling the burdens. He wants a peaceful life just as much as you do, but his way of acheiving that is going to be a bit different from yours. Work it out together. Find a happy medium. And if means you never have decent furniture in your house again, so be it (lol, because my son is a highly physical pacer, that is a choice we actually have made).

Hello Hopeful-
I think once you get a diagnosis, you should meet with the school to get an IEP in place. It sounds like he is doing good at school, so that is a blessing. Even though he is doing good, he is probably using all of his energy to hold it together at school. That is probably why he is losing it at home. He should be able to get therapy at school to help with some of his social issues, and maybe some of his sensory issues. Most children on the spectrum have lots of sensory issues which causes the meltdowns.

I wish I had more advice for you. My son who is almost 5 was diagnosed as PDD-NOS/possible Asperger's. He does not exhibit a lot of agressive behavior, so we have not had issues with that. My son does have difficulty with interacting with other children. He has been in school since he was 3, and does not interact with any of his peers. He loves adults. He clings to the teachers at school. I really try to work on the social skills by taking him around children his age in small doses and encourage interaction without pushing too hard. It sounds like your son is highly intelligent, and this is probably why he struggles with children his own age.

As far as the repeating questions, I tell my son "You can ask me 2 more times and then we are all done" Then I say "Now, let's talk about"----- I agree with the other posters that you really have to explain to an Aspie child why things are being done and why behaviors are not acceptable, and why and what will happen if he does not follow the rules.

My son is a lot like yours in really wanting to play with certain things when he wants to and gets aggitated if he can't have it right then. I have tried using the object of obsession as a reward. Use it as a reward for him being able to do something that you want him to do. I have found that if I just let my son have his fill of something (as much as is reasonable) then he usually moves on to something else. However, I never know what that new something is going to be!! The other thing I do is remove things out of his sight, and sometimes he forgets about it, but not always.

As far as the lying, I don't think my son would really understand a lie unless it was about something very simple.

So far, we have not had to make any decisions regarding medication. Even though my son is not aggressive or hyper, he does have difficulties focusing and staying on task. At this point, we are just trying to keep him off meds as long as we can to teach him better methods of paying attention. I don't know what we will do when he gets older and can't pay attention in school. I do know that the decision to medicate is not one that any parent wants to make, but I think parents have to make the best choices for their own children. Please do not give up on Wrong Planet just yet---I think you will find valuable help here!

God Bless-