Dad of 4, new here

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cakedashdash:

I'm intrigued. I literally have no idea what a speech online store might be, and what kind of products you might be talking about. Google gives results, but I can't make sense of them. Care to enlighten me?

Stop right here. Your new assumption from now forward is, "DS is screaming because he is MISSING SKILLS to communicate what he needs in this moment. He is FRUSTRATED."



He may know the word, but not be able to retrieve it at this moment. I see this a lot with my daughter who is being tested for dyslexia -- she's clearly trying to tell me something, but instead of coming out as screaming it comes out as, "Mom, you know the um um...Mom, the thing is um... I want to tell you about the um..." Your son might be doing the same thing internally, but then just blows past the upper limit of his frustration tolerance.



No, he's just so frustrated that screaming is the only sound he can get out. You need to identify the situations where screaming is most likely to occur due to not being able to ask for or tell you something, and figure out ahead of time how you can scaffold the communication for him. One trick that worked very well for my son was to teach him sign language for "yes" and "no". He could often use the signs to answer yes/no questions even when he was too frustrated to speak.



Yes, often there is a threshold where a kid "flips a switch" into a state where he's not capable of stopping himself. Often you just have to move him to a safe spot and wait it out until he is calm again.



Probably yes. This sounds like meltdown territory. They look a lot alike externally, but the basic difference is control and intent. Meltdowns occur when the child is so frustrated or emotionally overwhelmed that they lose control and just dissolve into screaming and other counterproductive behaviors. Even if you give in to a meltdown, the behavior often will not stop because the child has just "flipped a switch" and will take a long time to calm down.

A tantrum is more like the kid who is trying to get you to give in to buying something at a toy store. There is intent behind it, "if I throw a fit maybe dad will give in like last time," and the child has enough control to stop the behavior if the parent gives in or gives a severe enough punishment, "Stop right now or no electronics the rest of the day." Sometimes with our kids, it can start as a tantrum and then they get so wound up it crosses over into a meltdown because they can no longer regain control.

I agree with Zette. On the communication and screaming issues, you have to assume that your son is NOT making a choice but is, instead, inside a such a jumbled space in his own head that he can no longer sort out how to act or what to say. He is not in control, any longer, of his own thoughts and actions.

He doesn't want to be in that space any more than you want to deal with him in that space.

Most of us have spent a lot of time with our kids modifying their environments and mitigating triggers so that they get into that space of mind as rarely as possible. My son, for example, changes physically when he is under stress, and I learned to identify those physical changes and move him into calming activities when I saw them. As he grew older, I passed onto him the responsibility for being aware of the changes and moving into self-calming.

But at age 5, the job is, unfortunately, all yours. Identifying stress factors is difficult, as they are cumulative, and also because things your child may be highly attracted to and interested in may also be issues for him. You have to keep track of where you have been, what you have been doing, what the environment was like, and what the behavior patterns are, looking for potential correlations. Sometimes you see the effect hours after the stress, too.

The reason a poster mentioned wheat is because many ASD kids are gluten intolerant. If that is true for your child, wheat is a stress factor. For my son, we eventually figured out that soy was an ingredient to avoid. There is no magic, single answer, unfortunately. It is all detective work.

At age 5 my son was highly attracted to crowds and people and noise and commotion, but it slowly became evident that he couldn't process all that, and he would be sensitive to every little thing for quite a long time afterwards.

Some things that could be stress factors include:
1. Anything that is unexpected - make sure your son is well prepared for any changes in routine, any changes in what you have told him, and also for each ordinary transition in your day. Look out for little things that may seem un-meaningful to you, but have somehow become an integral part of what he expects to see and experience.
2. Noise. It may be certain noises, or combinations. My son was deathly afraid of automatic toilets for a while, and some kids are afraid of heater noises that start and stop unexpectedly.
3. Visual. Brightness, flashing, etc can be sensory triggers.
4. People, especially children. Largely because they have a nasty habit of being unpredictable.
5. Smell. Some ASD individuals are extremely sensitive to smell.
6. Having time pressure.

And so on ... I could probably spend all day listing potential stress factors. But they are only potential; you have to find out which ones affect your child. I wish I could give you shortcuts, given how full your plate is with the other children and homeschooling, but I can't. You have to dig in, stay focused, and get to know your child better than you believed possible. Pay attention and note the patterns.

What is the remedy? Most ASD individuals use an assortment of self-calming behaviors to deal with stress factors and get their brains refocused. There isn't any single answer here, either, but some sort of motion is usually involved. It is very important at your son's age to let him just fly with whatever weird physical behavior he tends to fall into; as he gets older you can help him find more appropriate ones and also teach time and place. Some common self-calming behaviors include:
1. rocking
2. chewing (they usually reach for clothes, given that sleeves and necklines are convenient)
3. repetitive verbalizing
4. swinging
5. jumping
6. pacing

And so on ...

I wish you the best of luck. He sounds like a wonderful child. My son always attracted the attention of people when he was little, too; he was just so full of life and unafraid. He still is, but he now channels most of that onto the stage; he is very involved with Drama at high school, which has been perfect for him.

Hi all,
Just wanted to say thanks to you all. This has been extremely helpful, both the actual Q&A and also getting myself more relaxed and optimistic about the future.
I haven't been on this thread for the last few days because I'm now spending more time talking this thru with local people IRL, and I also got better at finding useful info in existing threads on WP.

Just remembered another book worth reading. It's online and free, and was written by one of the Wrong Planet members on the spectrum: Congrats! Your Child is Strange

It is a little hard for a parent to read, because the author's parents were pretty rough in their treatment of him and the author seems to assume the reader has the same attitude. The book could use some editing in the first couple of chapters, but has some gems that can really help you understand your son's point of view. The sections titled "Results of Stress" around page 33 and "The Six Stages of Stress" around page 41 were hugely helpful to me.

I'm about halfway through now - thanks for the recommendation!
I gather the author used to have a whole website going at asdstuff.com but it's down now - wondering what else was there and whether there are any mirrors / backups?

The rest of the site never really got developed. He was working on it all in a period between graduate school and getting a job in his career field, but once he got that job, he just didn't have the time. The author is a very smart young man who is member here.

Another way to look at the shrieking/yelling as communication thing is remember that no matter how smart your kid is, if he has ASD that means, by definition, there is a developmental delay in communication. That is true regardless, even if he is the "Little Professor" type and has a vocabulary full of SAT words.

Think about babies. They need something or they are uncomfortable, they cry. It is instinct. When a child with ASD melts down, his intellect is temporarily deactivated by the hormones flooding his brain. All he has is instinct.

You are going to want to extinguish the shrieking, especially if you, yourself has sensory issues. If he doesn't have the skills to do it, he will probably turn to something worse than yelling. The skills have to come first.

Try to keep cool, no matter what. Sometimes, our frustrations can inhibit our ability to see what our kids are trying to communicate. My son will scream and scream trying to get me to do something. I am so affronted by the screaming that I fail to notice what he needs. Ironically, we have to become mind readers, even if that is personally difficult for us.

Provide a lot of prompts, and give wait time. (Depending on the kid , 10 seconds can be reasonable).

Yes or no questions without the use of negatives (e.g. instead of asking "do you not want to go to the park?" ask, "Want to go to the park?") Paying attention to the complexity of our language can help a lot.

Avoid using lots of pronouns, and use directive language (Instead of ,"Can you see if he wants to give the ball to her?" ask, "Ask Joe to give the ball to Jenny.") Kids can sometimes get hung up on trying to answer a question when you are really giving them a direction.

Welcome Maglevsky. Your son sounds a lot like my 5yr son both physically(big sweet natured 5yr) and some of your challenges with him(getting him to speak, not playing with others, insanely picky eater, occasional screamer). We have had some great success with some of the issues, not the food though. I actually landed here because I adore my little man so much most of the other sites were too negative and cure related for me. Parents here really embrace all of their child and are not trying to make them normal, just happy and as independent as they can be. However, we don’t have any other kids and aren’t homeschooling, but there are a lot of sage parents here who can help on that.





My guy is the same, wants and needs company but doesn’t know how to get it. He has been in a HFA preschool now for just a year. I have noticed a major difference just in the last 2-3 months. Where before he would only play near kids, he will now play with them, but only if they initiate. He will initiate with adults, but not peers. He also knows all the kids names in his class and in the kindergarten class he joins for reading. I know you are homeschooling, but I am sure you could create a small consistent group of either other HFA kids or understanding NT kids that he could hang out with on a regularish basis. Somebody else mentioned sports, being big and strong it might suit him. I am not sure if you are in the states, but there are a lot of different groups and activities for socializing if you look for kids on the spectrum. His timeline might be way longer than yours, but given time and support it does make a difference. If the parents are ok w/ it having pictures of the kids you can go over with your son might help. It made a big difference to my guy.



My guy was called pre verbal until 4yrs. He could talk, but getting to was rare even to have his needs met. He too would talk quietly to himself. He also would sometimes belt out a paragraph out of nowhere or quote a song I didn’t even know he knew, but then perhaps no words for the rest of the day. He was averaging maybe 10 words a day, but his vocabulary was 400+(at least) words. What worked for him was starting really small and focused. We started with “please”(I figured if he wasn’t going to speak what he did say could be atleast polite, it might help him w the teachers in school). It started with “please” if he wanted the next piece of puzzle, a fav activity. Then we generalized it to please for when he wanted a drink(before he would just hand us his glass) or a snack(he would stand by the kitchen). After that we went to “puzzle please” and then generalized that over items. I would say that took a maybe two months of daily practice, but it really was worth it. He was able to ask for anything he needed and it cut way down on our guess what in the world he needs game.

I also noticed you were a bit wordy with request. Both my speech and ABA suggested 1-2 more word sentences than your child speaks. So “ Water Please” then maybe “Say Please” and if that isn’t working, try one more time then hand him what he wants and say “Water Please” as you give it to him. As hard as it is, try not to get frustrated with him about it. If he is a perfectionist, like my guy was that will just get him to freeze up. For my guy, somehow teaching him the fundamentals of asking and receiving opened up a flood gates of speech. He is still delayed in his speech and has pronunciation issues, but is reading 1 st grade level books out loud to the class less than a year after learning to ask for a piece of puzzle by saying please.

Don’t be surprised if your son knows everything your saying. My son just recounted an event that happened when he was 14 mo to me. He found the cord to a small table top white Christmas tree and pulled the tree down on himself from a bookshelf. It frightened the pants off him and the next year we had to forgo our Santa picture because Santa was standing next to a Christmas tree. A month or so ago we got a toy catalog and there was a white tree in the background. He recounted that the white tree fell down on his head and scared him. He even pointed to where the tree used to be. Assume he knows everything you said and do, even if it doesn’t seem that way. Make sure others treat him that way too.



If you can figure that one out, help me out. Nothing has worked on this for us include special novel food programs devised by nutritionist. V8 fusion is 100% juice, 50% fruit and 50% veg. Met more than one ASD and NT picky eater that will drink it. It makes we worry less, that is about my only tip.




My guy does this too. Much of it quieted down when he started talking, probably 60% . He replaced it by either “no _____” or “too loud/hot/cold/big/small” . Recently we have made headway on the remaining portion by saying “no screaming. say, no thank you” every time he yells and cover our ears so he knows it bothers us. It is slow going and takes lots of prompts and reminders, but had probably addressed another 20%. The rest is a mixture of normal I am a 5yr with too much energy for this little body, the quick protest yell, and some genuine stimming that I don’t intend to address.


I don’t know if any of this is helpful. What worked for my guy might now work for yours, but minus the playgroup it is all very implementable. Can’t wait to learn more about you and your son.

Don't ask him what he wants, when he's screaming. Ask him why he's screaming and then listen to what he tells you. Because he's not doing it nonchalantly. He plays alone for two reasons: 1) he's happy and 2) he knows he annoys people and happy people don't like to annoy people.

If he needs something that he cannot get any other way, annoying someone by asking for it is not something he will enjoy. Hence, if he can't figure out a way to get it himself, then he's already on the edge by the time he has to ask for something because he is forced to annoy you to get what he needs.

He's not petty. He will not upset others for fun or ask for things he doesn't need or that he can get himself.

He's going to be attracted to people like him. Not autistic, but HAPPY people - and those interactions are often going to begin with something he notices, which isn't always going to be what you would consider appropriate. If you embarrass easily, then avoid taking him with you. He will not be hurt, or, if he is, he will get over it very quickly because happy people, autistic or not, don't hang out in the lower emotions because they can't tolerate it. That's what makes them appear "sensitive". The average emotion of this society is not happy. People put up with a lot of unhappiness but happy people can't do that. It's the "pits of hell" for them. If they dip, then they clamber out, quick as they can, using the shortest possible route which often means being alone so they can untangle it. You can't untangle such things for him because you don't see things as he sees them. If he puts himself into aloneness, then there's a reason. There will be a perfectly logical reason for everything he does. Reasons you aren't always going to understand.

Tell him that you (and most people) don't think as fast as he does so that the "lag" won't bother him. A lot of upset is because of the "lag" - the time and effort it takes to get the one he has to annoy up to speed.

Don't "brush him off". If he has come to you for something, it's because he needs it. Remember, he's not petty. He's already looked the situation over and come to the conclusion that he's going to have to annoy somebody by asking for something so don't think that it isn't important. It is to him, or he would not risk annoying you in the first place. Not annoying you is often going to be his top priority. And that's going to include being injured or otherwise at risk.

The best advice I can give you is to get happy yourself because not only will you feel better, you'll also understand him better. If you don't think you can do that, then leave him alone unless he comes to you and when he comes to you, give him your full attention because it could be anything from needing some small thing to complete a project - something you think is trivial but is of supreme importance to him - to internal bleeding.

And don't worry about playing alone or his intense focus - those are good things, to him. It's the only way, in this society, that an atypical and/or fast mind can run with the throttle wide open and he needs that because the outer world is extremely slow and/or illogical to him and repeatedly interrupting or depriving him of his intense focus time is the equivalent of torture. Intentional or not. It is also probably one of the ways he copes with upsets. Intense focus = happy - or, if not happy, then the ROAD to happy.

Don't interrupt him as if what he's doing isn't important. If you do, then you'll just be "one of them". Not dad or a "loved one", but one of "those who are annoyed by my very existence".

If you want to bond with this boy, you're going to have to spend some happy time with him and let him be who he is, otherwise, you'll just be another hornets' nest he has to avoid - one of many that are going to surround him, his whole life.

Don't worry about him. Don't approach him with that worried look on your face. My mother had that look. Every time she looked at happy me, it was with pity or self-pity or guilt or concern. It was as if she wanted me to feel bad for being happy or for being who and what I was. It was just the ickiest thing. Needless to say, bonding with that wasn't ever going to happen.

Of course, these days, autistic kids are just taught that it's their duty to want to be "normal" - that they're defective and must earn their right to existence and serve society and suck it up. Which should be a crime, but isn't.

Something else you will find useful in understanding is the thing about "obvious stuff".

There are three kinds of obvious things.

1) Things that are only obvious to him, that you and others haven't noticed.

2) Things that are obvious to everyone.

3) Things that are obvious to everyone but that everyone socially agrees is "wrong" to say out loud.

He'll probably have trouble telling the difference between these three things. There's not much you can do about it except to give him the information of there being three kinds of obvious things so that he is aware and can figure out how best to deal with it.

You can also try creating a "secret signal" that he can check before he speaks of something obvious that you've noticed and fear he may mention. Like a casual wagging of a specific finger but there will still be things that he notices that you have not. So you'd want to make sure he understands that you don't notice everything he notices.

Some screaming may be the result of something that is obvious to him and that he will not understand why you don't see or understand "this obvious thing". Which may also account for speechlessness or silence as he considers and tries to figure out the discrepancy. If you tell him about the three obviousnesses, it will help him in future instances and you'll probably notice a significant reduction in instances of frustration and "meltdowns".

Some screaming will be the fastest way he knows to get someone to stop doing something "to" him, which could be just about anything from demanding his attention to teasing.

maglevsky

I made a rhyming word flip book I cut out magazine and drawings, I made flash cards,
I made my own personalized children's books with my children's names with words they needed to no.
I am artistic but not crafty so they looked ugly but got the job done.
I saved a lot of money that way. Mostly I saved time if I knew I could make something it saved me weeks on shipping. I bought a lot online but I tried to make the best purchases.

Bingo. Get your message through their eyes, not through their ears. I use blank 4x6 index cards, and insert them into mini photo albums of the same size. As for real-time conversation, I use a magnetic drawing board. Nightly bedtime "conversation" by talking and drawing pictures at the same time, pretty much gets rid of all tantrum issues. Teach them to read before teaching them to talk. Depending on your child's type of autism, that might be sufficient: with a budget under $50, you can save a child's life. (Unfortunately if your child is video-memory type, you'll have more work to do, but maglevsky's son's case doesn't seem to be pro-video.)

maglevsky: given that you are also on the spectrum, I feel you will understand this point immediately: every important message that you want to convey to your son, give it to him through his eyes. He is visual. He has been craving for you to talk to him through his eyes for years.

A few more pointers regarding your son "DM":
(1) OK to give him space to do his thinking. SOCIALIZATION CAN WAIT. Visual-manual skills will build the foundation of his brain functions. That part needs to be developed first. Speech and socialization will come later automatically, but please put effort into developing visual-manual skills (and that includes reading!! ! I don't know how much your son reads, but I have a friend whose son on the spectrum can spell a 9-letter word being less than 2 years old. Reading needs to start early.)
(2) Never attempt to make him "normal". He is fine the way he is. What I have seen all too often is parents attempting to mold their children into neurotypical standards, but ending up causing harm in these children. I never attempted to make my children normal (to the dismay of therapists and family relatives), but both of them ended up much more "normal" than other children on the spectrum.
(3) Bedtime picture-aided talking is important. That'll solve "your something from this shelf up there" episode problem. These children have long memory and record every single bad experience in their brains. You really need to talk to them using pictures, so that you can remove those bad episodes from their accounting ledger.
(4) "I've told him many times that I can't make out what he's saying when he's screaming at the top of his lungs... Does he think I can understand his screaming?" Don't just tell him. You need to draw pictures for him. By forgetting to draw pictures for your son, you are not communicating with him. Whatever you want him to know, whatever you want him to learn, draw a picture: soon after each incident, and repeat it at bedtime. For frequently repeated issues, make a card album, so you can have it ready at any moment.
(5) "DM also talks to himself": that's OK, who doesn't? Both myself and my daughter do it. When you don't get to draw pictures or write things down, how else are we supposed to get some outer feedback loop? He is expressing some deep reasoning skills, which will be good for him professionally later in life. Once he manages to put things in pictures or in writing, he should get better.
(6) Eating: make raw vegetable juice if you can. (A high power blender is needed, though.) Good thing about juice is that you can mix in all types of fruits and vegetables, while preserving a base component that they are already familiar with. That is, the liquid form allows you to train their acceptance of a great variety of tastes, while always having something in it that they are already familiar with. You can "pivot" into new vegetables/fruits, I guess you know what I mean. The juice must always have multiple ingredients, but you can switch the ingredients every time. Today, my kids eat pretty much everything. This tip is from my wife.
(7) "my better half draws one of his favorite cartoon characters on them with permanent markers." Great. My son is expert in toilet brands, so I write brand names like "Gerber" and "Kohler" on our nameless toilets. Believe it or not, toilets are a great conversation topic. Many of my son's initial sentences come from describing toilets.
(8) "Nudist tendencies": a solution is to prepare a card album and have it handy to remind him. It's just a phase. Sure, schools don't like it. But my son did learn to behave.
(9) Home should be the center of education. ABA and schools are there to help, but they play a secondary role.
(10) Trust your instinct. It takes an autistic person to understand another autistic person. That's what my wife tells other people. See, it's been over 70 years since Leo Kanner's study on autism in children. This is what I read on a site (http://www.autismsocietypgh.org/an-editorial-you-should-read/ ) : "...Much has happened in the field since Leo Kanner published the first paper on autism 70 years ago, but the underlying causes of this condition are still under investigation. There is little consensus on even one likely cause. And further, there are only a handful of accepted, evidence­ based interventions. Fortunately, exciting new research on autism is published almost daily; and we truly hope there will be some real answers five years from now, when we celebrate the 75th anniversary of Kanner’s paper." In short, the medical community is pretty much as clueless as 70 years ago. (No offense to medical professionals, many of them are my relatives.) I have a PhD in theoretical physics, so I would tend to believe that I talk at the same level, or higher level, than medical professionals. And I am telling you to trust your instinct.

I have expressed my opinion about autism more than once: the children are fine. We the adults are the problem. Until we the adults correct our behavior and learn to communicate with our children, our children will always be in danger of underdevelopment. I misunderstood my son for 2.5 years, but after I realized how to communicate with him, all problems were gone, and he is blooming now.

Wow, still more responses! and detailed hands-on ones too. Thanks all!
Not sure I'll be able to try all the suggestions, what with 3 other kids and a full-time job, but I'll try. Some of the difficulties we're having as a family sort of compound each other in a big pressure cooker. But reading around here helps me understand my kids and myself better, and that helps release some of the pressure which in turn frees up time and energy for dealing with the other issues.
Sometimes I get back from work and find a wonderful family all loving and supporting each other as best they can, other times so much bad energy has built up between them during the day that I can hardly deal with it - what they need is a 5-shouldered, 5-eared mutant with way more patience than me, so that each one has their own dedicated shoulder to cry on. Thankfully, since I've come onto WP, there's more of the former and less of the latter.

Hmm... on reflection, I think I would probably not get dx'ed as ASD. Most things about myself that used to puzzle me (and others) can be adequately explained by me being of the INFP personality type (just found out about that recently). Hence, Occam's razor. Nevertheless I still feel more "at home" here on WP than most other places real or virtual, so who knows. I'm in no hurry to get dx'ed, so we may never know.
One thing I have noticed is that I now often get a sense that I understand the kids better than my better half does, whereas it used to be the other way around. Of course I may be wrong, and have actually been proven wrong in some cases...

Enough rambling. I'd like to ask another more concrete question.
My other son, let's call him "RN", 3yo, also looks to be on the spectrum. He used to get a sort of seizure as part of (what I now know is called) a "meltdown", where his body would go all stiff, fingers and toes curled up, he'd stop breathing, roll his eyeballs upward and get blue in the face, then he'd sort of almost faint, his body would relax and he'd be all spaced out for about 10 minutes and gradually go back to normal. It freaked the hell out of us the first couple of times. We consulted the family doctor, described the whole thing and she basically said "yup, some kids do this, don't worry about it". We didn't mention autism to her at that time because we hadn't really thought of RN as being on the spectrum, or what the spectrum even is. RN has not had one of those seizures for ... hmm... quite a while anyway, maybe half a year, whereas at its peak it could happen several times a week.

Is there a name for this kind of thing?
Can it mean something different in the context of ASD than with NT kids?
Anything else I should know?

I am not a doctor, but it seems odd to me that the doctor would not advise that this be checked out with some testing just in case. Did she think he was holding his breath on purpose, and maybe she misunderstood.