Emotionally wrought dad

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Hello, my 4.5 yr old son has been diagnosed with PDD and appears to me to be on the ASD spectrum in many ways but seemingly "mild" compared to the many that have children worse affected. Nonetheless, it is very difficult watching my poor little boy deal with the prison he's in. He has a very hard time with irritability and can go 0-100MPH in seconds on screaming and emotional (not angry) tantrum. It's taking my wife and I about two years to figure out what's wrong. He's getting high quality OT/ABA and voice therapy twice a week, plus he's enrolled in a special needs program ran by the county schools; essentially preschool for children like him five days a week, three hours a day.

I've never dealt with anything like this in my life, it's literally worse than being shot (been there and done that, got the scars but that's not the topic here). I'm emotionally drained nearly every day, it's taking a toll on the family but we are bearing it well due to a good work life balance (I am at home a lot due to lenient telecommute offerings, commute time, and work hours plus my wife does not work). However, it's still very stressful as I feel like my little boy is in that screaming shell, we just need to help him learn how to get past his outbursts.

I am just now beginning my self education on this, we have been to many doctors and found no physical ailments with my son. He has a completely normal 6.5 yr old big sister. No record of ASD/PDD in either family. We are moving to a fairly gluten/casein free diet for him and us (my daughter can consume what she wants at school). Just started the diet, we and the therapist think it might be helping based only upon today's therapy session but of course, that's not meaningful data. Not a single doctor that we have seen has really impressed me nor given us much hope other than saying "he'll grow out of it."

My son is academically ahead of his sister when she was at his age, but his speech is very limited. He can and will repeat anything you ask him to say, but will not engage in conversation and very, very rarely ever tells you anything such as what hurts, where is he at (we have a few acres of land with forest around our house that we own), and so on. He knows the names of most North American mammals, knows his ABCs, numbers, etc, and can even recognize (maybe read?) words from his favorite books in other texts. He's also memorized some books and reads them aloud to himself.

His tantrums seem less angry than just frustrated and upset. They often end in tears. Physically, he is well developed, sleeps well recently but we have had stool issues at night coupled with taking a couple of hours or so to actually wind down and go to bed. Buying a weighted blanket for him and switching his milk consumption to soy milk seems to have ceased his stool issues so far (a week), but he still won't have a bowel movement on the toilet at school, he goes in his underwear/pants despite using the toilet at home. He is a sweet kid and never fails to kiss an injury or try and comfort his sister when she's upset. Inside play seems OK, very imaginative with play acting and babbling intermixed with dialogue from his favorite shows and books, but outside play can be nothing but stimming - throwing dirt up into the air and watching it fall for nearly an hour.

We are planning on further pursuing the diet route since we have him in quality therapy and preschool. I live in Northern Virginia and am hoping to find advice on ASD knowledgeable doctors and/or nutritionists. I will be attending a local ASD parents support group meeting later this month. I would appreciate any and all advice offered, plus...I just need to vent on how hard this is to see my little boy go through this.

Thank you for reading.

Autistic people develop differently and typically the frustration type tantrums subside once they learn better communication. You do not have to wait for speech to kick in for this. This will not delay speech, but will help build trust. Many people use PECS type systems with a lot of pictures. Some will do a version if sign language. Sometimes you can stave off a lot of these types of tantrums just knowing the rhythms of your child, (sort of intuitive communication) and learning that he expects things in a certain order or together, or has an aversion to certain sensory experiences like certain smells. During that time, we found a lot of scaffolding to be helpful in that we tried to anticipate and prevent issues that we learned were problematic. You can't prevent everything, and so those things that happen that you failed to anticipate or could not help will just exist.

Actual speech may be slow, and will often develop along an echolalia path, where they repeat wither things just said by themselves or others, or maybe even from memory. This is normal, and you can tell when more original speech occurs later because there is more pausing to piece the words together and sometimes worse grammar if most of their prior speech was echolalia based on adult speech.

The most important thing is developing a trust relationship, play with him on the floor the way he likes to play, not necessarily how you think he ought to play. Branching out to new skills can result from special interests, but I think you really need to build trust first.

I definitely do play with him or attempt to at what he likes. He prefers roughhousing and chase/tag. I don't think he has a trust issue with me.

I do to mean to imply, he did. I hope you did not take it that way. I just meant, that is the first step.

This is a red flag. That means you think he has problems. You are not respecting him as an equal rights human being. You think he needs to be treated to get rid of his illness.

Most of us here on the spectrum don't think we are the "poor little ones in a prison."

Start by taking your son as an equal. If he throws a tantrum, that is his opinion, his sovereign expression, not the result of some illness that needs to be rid of. Learn to respect his opinion. You can have a different opinion, that's fine. But don't blame his sovereign decisions/expressions on some made-up psychological illness/disorder/defect.

I used to draw pictures at bedtime for my children. I talked to them by drawing pictures. It's all very simple. Autistic children have powerful brains. They tend to focus on particular issues (or sensory signals). In other words, there is an auto-feedback loop inside their brains (that's what makes their brains powerful). There is persistence in their thoughts, feelings, sensory signals. On the other hand, the words from your mouth are gone with the wind the moment they leave your mouth. So, obviously, you need to draw pictures (which persist for sometime) to talk to your children, instead of just talking to them with your mouth. That part is elementary. Messages not drawn, are messages not communicated. As simple as that.

Secondly, an auto-feedback loop in the brain picks up one single line of thought. Have you ever placed a microphone near a speaker? You get a high-pitched, single-frequency sound. Right? Single frequency. That means when your child is focused on one negative thought, there is no way you can convince him to get out of it. It's a repulsive loop. So how do you break into his repulsive loop? That part is called modulation. You peg your signal onto a carrier frequency. Let me tell you how to achieve modulation. (Technically this is called the "inward modulation". There is also an "outward modulation", but that's for something else).

Tantrums issues are NOT solved during tantrum moments. The trick is when tantrums happen, you simply take a note. Draw a picture. That's enough. You solve tantrum issues when the child is... HAPPY! When the child is happy, you remind him about his tantrum moments. When he is older, actually you can take him out to happy activities: elevator rides, frozen yogurt, whatever. When he is happy, remind him about his tantrum moments, by drawing a picture (or show him the picture you drew when he was mad). And next time, he throws a tantrum, you remind him about his happy moments, again, by drawing a picture. Show him that he did have fun with you, in so many activities before. For now, at young age, at least you should draw pictures for him every night at bedtime. Talk to him about his good times and bad times throughout the day. This way, he will see that you are really communicating with him, that you are making an effort to address his concerns. Tantrums in kids often happen because parents are under time constraint. That's fine. Parents have responsibilities. But, at bedtime, you need to be authoritative (not authoritarian), and give the rationale behind your actions and decisions, all through pictures. You really need a magnetic drawing board.

Read "The Little Prince" book, particularly the part about baobab trees. It's all very easy when you are diligent in removing the baobabs when they are sprouting. But if you are negligent, when the baobab trees grow too big, the whole planet will be blown into pieces. And that's what you are dealing with, now.

My daughter is 9 years old and fully verbal. But she still loves my drawings. The other day, in a restaurant, she did not finish her salad. So I drew a picture on a paper napkin to tell her: "Learn to like things that you don't like. It's a skill." And look at the response she drew.



Monkey see, monkey do. Start to draw pictures for your child. And you'll be amazed how they'll develop their deep reasoning skills, when they start to draw pictures themselves. The autistic brain is a powerful brain. With the right guidance, you'll be glad that you have a child that can throw monstrous tantrums. We already live inside the Technology Singularity. You'll be glad to have a child with a monstrous brain. Other parents are not nearly as lucky. Whenever I see a parent with an autistic child, my first word is always a sincere "Congratulations!"

Well, we're going to have to agree to disagree. When he can't handle everyday situations, I as a parent worry and it's clear to people that observe this child (like you know, me) that he is having a hard time developing due to his condition. His intellect is impressive but it is stifled by his irritability and tantrums, hence the "prison" comment, the child cannot communicate right now and we've already had people judge him on the tantrums and that translated to loss of developmental opportunities. Furthermore, trying to turn that into me not respecting him is absolute and complete nonsense. Here I am, worried, wanting to help him, clearly an involved parent seeking help, and you claim that I do not respect my son?

I don't appreciate the insults.

I agree on the pictures, we have visual schedules in place but I'll try more drawing for him using my meager talents. I constantly am speaking to him, basically a stream of consciousness babble.

Which baby or toddler can handle everyday situations, huh?

When neurotypical children cannot handle everyday situation, we say, well, they are still children.

When autistic children cannot handle everyday situation, we say, they are sick.

Get it?

You are using neurotypical children as the reference frame to look at autistic children. That's a wrong way to go, millions of underdeveloped autistic children are proof of that. That is a slippery slope. Apply the same thing to sexual preference, religion, skin color, national orign, and you know where you are heading.

What your son needs is not therapy. What he needs is development. There is a huge difference between the two. Therapy is to get things up to the point of being "normal." Development means to get him to his maximum potential, not settling for anything less. Development means establishing the best software connections inside his brain.

Your son's tantrums come from you. Children don't throw tantrums for no reason. Instead of trying to change your son, look at yourself in the mirror and realize that YOU are the one that needs to change. Not him. He needs development. YOU need change.

Autism has been with us for thousands of years. Just like color blindness, schizophrenia and Down syndrome. They are all meant by Mother Nature. Mother Nature doesn't make mistakes at these levels of prevalence. We are the ones making all the mistakes.

http://www.eikonabridge.com/Tomatoes.pdf

Conversion therapy is a wrong way to go. But if you insist on it, go ahead, have fun, follow the path of millions of parents that have failed before you. You are free to choose. Some people enjoy the pain and choose to be masochists. It's a free world. You make up your decisions, you live with the consequences. No need to whine or cry. No need to complain life is hard. Life is hard because you chose to make it hard. Be happy with your choice.

Meanwhile, myself and some other parents with kids on the spectrum will just keep enjoying our happy children. Happy children with big smiles everyday. I never look down on my children, I have high reverence towards them. I have high reverence towards all autistic children.

Please search this thread carefully and tell me where I said anything about "conversion therapy."

You have some preconceived notions about me, a person whom came here looking for help and suggestions. Confronted with disagreement, you insult and double down on said preconceptions. You don't want to help, you want to judge, and label. I have no more time for you.

There is sort of a balancing act that this sub-forum has, that is not altogether successful, in valuing neurodiversity and balancing that with the challenges involved in raising an autistic child. There is some language that can be used innocently that might offend some because many of the parents here are on the spectrum themselves. Some word usage can be misinterpreted because it is often used by a particular prominent autism group that tends not to respect the agency and value of autistic people. Usually new posters are not expected to know this.

Sometimes things on here work and sometimes not so much.

Most people on here do a pretty good job, but sometimes people who will put too much weight on one side or the other side of that balance. Sometimes it is situational (based on something specific going on at the time of the post) and sometimes it is philosophical.

Most of the advice on here is good, but like anywhere else, members have strong opinions and often they differ. You have to kind of read what different people have to say, and figure out whose advice seems to apply best to your own child. Since autism is a spectrum, not all advice that works for one family will work for another, even if the strategy seems sound. Sometimes people just don't have the same parenting outlook, but may have some advice that seems like it makes sense to try.

I'm certainly open to any and all good advice; as I noted I will be trying more drawing.

On topic: we are removing glutens from his diet (and ours). In two days of this diet, his therapist noticed improved behavior and speaking (we did not and have not told her that we have modified his diet). My wife and I have both noticed improved speaking and less tantrums. His problem with BMs at night after being put to bed seems to be subsiding, also he is going to bed earlier and sleeping longer sans the hour to two hours of banging on his door, playing in the dark, etc.

We are still seeing a problem with BMs. He will tell us "have to go poopoo" in an urgent manner...as he does go poopoo. He happily goes straight to the toilet for this but we still end up with a mess on our hands. Urination seems to be pretty much done, a key breakthrough was him realizing the joy of peeing outdoors (we have a 5 acres yard with plenty of privacy) So, he holds it until pretty much too late. The gluten free diet seems to be fixing the 3x or more BMs per day.

The problem with bowel movements is something we are trying to solve this week while he is on spring break. The problem is much worse at school despite ours and his teacher's frequent queries regarding him needing to go. I'm going to print out some relevant pictures in case that route works.

He knows just about every word (age appropriate) in the book, there's not a noun that he does not know and when pressed (example: "say thank you, James"), he will repeat it verbatim with fairly good diction. Unfortunately his anger/frustration seems to get in the way of him articulating what he wants or what is bothering him.

Hi Bax.

I think there's a balancing act between not scaring you away, and also being honest and true to ourselves in how we approach you.

I want you to try an exercise. Imagine that your son is an adult friend, and he is a fully capable, listening and hearing, and comprehending human being. (Yes, I know that's a run on sentence.) Now, in your imagination, say to him the things that you just said about him in your original post.

-you seem like you're in a prison
-living with you is like being shot in the head
-your big sister is completely normal (and presumably you are not)
-your meltdowns are tantrums ("Trantrum" means that you are doing this on purpose to get something. "Meltdown" is an emotional response to pain that is not goal orientated. They are different.)
-you are a drain on our family

Would you EVER speak to a friend this way? Then why are you doing so about your own beloved child?

See, here's the thing. Autism (including PDD) is a communication disorder. We don't express ourselves very well. But we DO hear. And we do remember. I trust you aren't saying these things in front of your kid. But he hears. Trust me. Kids overhear things.

I had a really abusive childhood, but one of the things that haunts me the most is my mother breaking down in tears and saying that I would never go to college. Just that. She didn't cuss or anything. She was wrong. I have a masters degree. But I'll never forget that my own mother thought that I wasn't good enough for college.

That being said. Yes, by all means, please take care of anything that might be physically making him miserable. Like all people, kids on the spectrum learn best when they are physically well. Gluten does not cause autism. You will not cure him with diet. But you might help him feel better if you get him pooping normally, and that will help him feel calm and ready to learn.

Please give your son time to "stim" at home. That's REALLY important. He has a very full schedule, from what you tell us. He needs time to just be him. He needs time to be a kid, and that means doing ridiculous, nonsensical things that adults can't understand. All kids do this. He just does it in a way that is uniquely autistic. If you want him to be more connected with you (and it sounds like he already connects pretty well) your job is to enter into his stims with him. For just part of a day - part of an hour even - join him in what he sees as fun. Let him relax around you. Let him see you stimming right along with him. Let him know that he is loved and acceptable just as he is.

I want to refer you to the sunrise program. They do this child-centered method of therapy. I'm not thrilled with everything they do, but I think it's a better fit for you than simply telling you to not do ABA and then leave you dangling.

ABA is some messed up sh$t. There are plenty of good practitioners out there, and a lot of them have softened the therapy until it barely resembled ABA anymore. But in general, I have to say that ABA is one of the most common causes of autistic trauma - the real reason we act like we simply aren't happy. It's just that ABA is really coercive, practitioner-centered, and not responsive to the kid's needs. It also tends to teach obedience above all else, leaving us in a position were were are more vulnerable to abuse.

You are not alone. I live just a little further south past stafford and my wife and I liken our lives to a constant "churn"

I am on the spectrum as well as my two boys. Our house on any given day can be energy and sensory chaos. I don't know how my wife has survived the three of us, but I am glad that she has.

Aside from what others have offered I would like to suggest looking at the types (if any) food colorings and dyes that might be present in your sons diet. There have been many reputable studies that show their influence on behavior in a negative way.

Hang tough man. I know it can be a real challenge. I hope you find the answers you seek. Kind regards. Shark

Welcome Bax.

It seems you sure have done a lot for your son and he's made significant progress. I hope those around you recognize and appreciate what your family has done for your child. Most of us have felt what you are feeling now and can appreciate your situation. Raising any child is normally challenging, frustrating and rewarding all at the same time.

Some people here tend to be direct, very opinionated and also very passionate regarding raising their children. That's not unusual for parents in general. I think it's important to understand that some of those passionate people probably have the most to offer you in terms of learning how to better support you son. I recommend you not react with anger or frustration and simply try to learn from them. Many of them have been successfully raising spectrum kids for many years and have much to offer. I always like to read the posts from people like Jason because he's passionate, his kids are older than mine and he has learned a lot along his journey. I don't always totally agree but I usually learn something from him that helps me as a parent.

I have a son who is now 6 but was very similar to your child when he was 4. When he was 4 he had a large vocabulary of mostly nouns. He could name everything -- all of the 50 states on a map, many countries, and hundreds of birds/animals/plants etc. He knew all the street names near our home. And he was teaching himself to read as your son seems to be doing. At the same time, he had very little capability or interest in communicating with anyone. He couldn't ask for help or tell me he was sick/hungry/tired etc. The inability to communicate and control things and people in his immediate environment lead to frequent meltdowns.

Although there are big negatives, I'm a supporter of ABA. If ABA focuses on helping the child develop the skills needed to communicate wants and needs and develop life and ultimately social skills, it can be very helpful. On the other hand, if ABA focuses so much on trying to get the kid to behave as an NT child that it becomes stressful, it can be very negative. For example, if the therapists are obsessed with things like eye contact and elimination of repetitive behaviors and stims, it can cause more problems rather than help the child.

At age 4, ABA programs that focused on teaching my son how to ask for help and how to communicate needs, were very helpful. As he generalized those skills, his meltdowns began to slowly disappear. Today the meltdowns are pretty much gone and he is a much calmer and happier child. I'm confident you will see similar improvements.

Some ABA practitioners seem to believe that pushing ASD kids to the limit is necessary. After a long week of school, ABA, sports, piano lessons, my son is understandably emotionally, mentally and physically exhausted. Sometimes by Friday/Saturday he needs a lot of time to himself to relax and recharge. During those times we've had a couple of overzealous aides who pushed too aggressively and sent him over the edge. My wife and I have needed to make it clear that this is unacceptable and one aide was terminated. These days if my son is at his limit and an aide is visiting, I just tell the aide no programs today and we drop them at the zoo or a park or something similar to allow him to relax and do exactly what he wants. If he doesn't want the aide with him, we send the aide home.

I think you are wise to look at any potential health issue you child may have and be sure that it is addressed. For sure illnesses and allergies can have dramatic effects and ASD symptoms can improve greatly if they are addressed. If my child has any issue with health, sleep or nutrition, it has a huge impact on his ability to function.

Thank you, I needed that. See my upcoming posts but I wanted to thank you for the kind words.

Thanks to you as well for the kind words and your experiences with your child's speaking ability at four uncannily mirrors my own. See my upcoming post for an update.

You're making an effort to improve your son's life. I think that's great.

Well done on implementing the gluten/casein free diet. That's a big step. I only started that in my twenties. I dropped out of school at the age of 15 because I was a wreck and got bullied.

If you stick to that gluten/casein free diet it could definitely pay off. I remember often feeling tired and irritable because of having those in my diet.

Regarding diet I recommend you also get him as healthy as possible. Now that I'm an adult I can see my parents spoiled me by letting me have what I wanted and it made it harder for me to behave and succeed.

I'd recommend only allowing him candy and chocolate one day a week at the most. Sugar is addictive and ASD people have addictive/obsessive tendencies. I would advise against microwave meals because of the radiation. In our family we all noticed feeling better (ASD people and non-ASD alike) by stopping using the microwave.

There are a few ingredients that are very good for the gut too, which I think are beneficial to ASD people. One is raw apple cider vinegar. In our house we use that in cooking a lot and sometimes have it on fries. It improves nutrient absorption, promotes healthy blood sugar and is also alkaline. Most of us these days have acidic stomachs because we eat far too many acidic foods, it's a cause of much indigestion and can lead to illnesses, so it's worth looking into.

Don't forget too that fruit juices are high in sugar because so much sugar is pressed into one glass. I'd avoid them and stick to fresh fruit or make your own fruit smoothies/juices using a blender which would be lower in sugar than commercial fruit juices.

I don't know how good a chef you are but if you think your food isn't too tasty make an effort to go on a short cooking course. Lots of colleges offer them. It's easier to get kids to eat healthy if you can cook well. Since I learned to cook my nutrition improved a lot. If you struggle to get your child to eat vegetables there is always the cheat method of chopping them up small and putting them in stews or bolognese sauces.

When it comes to communicating try to learn what makes him click. We all communicate differently, even people who don't have an ASD. Some people are more visual. For example there are some people who you could not teach to do anything by telling them, you have to show them. Some people are doers. They have to learn by doing. Some people are aural, they learn by listening and talking. And some are processors, they learn by thinking about things a lot. We're all a mixture of all these types to varying degrees. So there's no one size fits all way of teaching someone things.

I appreciate it must be hard for you. Being a parent isn't easy for anyone and even though I have an ASD if I'm honest even I would find it challenging having a child like me. Good luck with everything!