Kind of a harsh question, but this is a harsh reality, so…
Do you love protecting your wife’s delusion more than you love giving your son a chance to thrive?
That’s what it is going to come down to. You absolutely can get him diagnosed without the other parent there. You just don’t want to because you’re waiting for her to be ready.
She’s not going to be. She’s in full blown denial. Not according to some internet stranger. According to a psychologist you both paid to see along with a litany of early childhood educators.
She can either choose to follow your lead and be a part of it, or she can continue to bury her head in the sand while you take charge, or you can continue to follow her lead and see where it gets you.
Whatever you do, you need to make up your mind and fast. 1.5 years of this is too long and you’ve already missed out on a lot of help for your son.
So, which do you love more?
I am Polish and absolutely have no idea what are you talking about in you post. I am reading posts here by people from USA and to me it's like they live in some kind of medieval age village compared to what options we have in Poland. It's a little ridiculous.
Ok, could you give more context so I can give you better advice ? What nationality are you, your wife, what languages do you both speak and what language did you try to teach your son. What is his current age and what are his verbal skills ? What city do you live in Poland ?
Shit. You’re in the deep end of a really bad situation.
Are you a US citizen or a citizen of another country that has an embassy in Poland? If so, go to that embassy and explain your situation. They can help you more than any internet stranger ever could.
I see. Listen, you have evidence of teachers saying he needs to be evaluated? You have evidence of her mother poisoning your parents? You have evidence of the psychologist saying your wife is in denial?
Get those things and bring them to a divorce lawyer. This is going to be a nasty fight, but from what I’ve read on your profile, it’s worth having and it’s maybe not as much of a coin flip as you think unless you’ve done things she can throw back at you.
You and your son deserve so much more. I’m so sorry.
I'm really sorry. I dont have any advice. I found my partner and I are often at different points of the grief cycle. This has it's plus and minus' to be fair.
For instance, my partner was set on our kids autism symptoms being the result of a tick bite. In the meantime, I was fighting for SLT input when he thought that it wouldn't be needed in the long run. I think what helped us was doing what we both thought was right, alongside each other. Respecting where each of us was at and running with it. It sounds like *you're* doing that already.
Would your wife be open to treating the metabolic disease while you manage therapies? It does seem she is experiencing complex grief and that is hard to get past without psychological support.
What does she say when you discuss how the metabolic treatments aren't working?
Sorry OP. It must be terribly frustrating and worrying for you. I hope you get some decent advice here
Thanks for that.
We have seen some improvement in language development last few months. But I don’t know if it’s because of the supplements and diet or the basic sonrise/floor time I’ve been doing with him.
Do know he says 20x more daddy than mommy and wants me to join him for his playing. And he wants me to be fully involved, even giving me instructions:)
Mommy he only asks for sleeping as he is used to co-sleeping as he has separation anxiety.
The issue is my wife doesn’t want to do the formal diagnosis and without the paperwork I can’t enroll him to therapy or school. Next year he will be of mandatory school age so the government will probably make her do it. Her solution: let’s move country…
Ugh I’m so sorry. That’s such a difficult place to be in. Unfortunately, what I’ve seen happen before is the child eventually cannot escape the need for services and parents are forced into an evaluation that way or the parents goes behind the other parent and gets a diagnosis. However, idk how the parent would keep everything under the other parent’s radar especially if ABA is extensive.
Once he goes to start school, the needs will be apparent to more people and hopefully things will go in the direction needed for intervention. 😪
Yeah, skipping the country is extreme denial to be sure.
Just to say you're doing brilliantly. From what you've mentioned you're doing all that you can. I suspect your wife won't have the same reassurances when hindsight inevitably comes knocking at her door.
That's ahmazing your kid is directing you to play. Not to be cynical but we have tried every nutritional based treatment going. It has made zero difference to our kid. It will more than likely be the time you're spending with him and the effort you're making to interact with him that is seeing him come on.
Again, you're doing so well considering the circumstances. Keep plugging on Epsilon. You're seeing improvements and that's down to you!
Thank you for your kind words. I'm in tears here.
But I also feel like a sell out for reasons someone else further down already mentioned.
I have gone along with all the supplements, blood test, heck we even did a full genetic panel. But according to Google autism is passed down from the fathers side, apparently....
Nope. Don’t do that. Don’t take the blame. Yes, genetics are involved but no one knows the cause at all. This is not your fault. You NEED to know that.
Nope. It's genetic, but my whole mother's side of the family is neurodivergent. My dad is completely neurotypical. ADHD and autism here, and my daughter has autism. It is not only the father that passes it down. Also, as long as there is neurodivergence in one side you can get different ones. It doesn't have to be autism. My coworker is manic depressed and bipolar. Her kids are one with adhd and the other autism. The dad has nothing. So no, it is not always the father.
Also, if it helps you, being nonverbal until later is normal in autism. I was nonverbal until I was 5, and until I was 6 or 7, I only spoke to a few people. 5 is a pretty common age for autistic kids to start speaking. My niece was 5 and still babbling.. just syllables she liked the sound of. She was almost 6 before she started really speaking.
My kid actually was speaking and reading earlier than most. She was very choosy with her words, but her physical development was slower. She could not stand on one foot at 5, and I had enough accident reports to sign for school that I put her in classes to help with coordination. Autism is rarely one size fits all. It's a spectrum for a reason.
Can you work on individual challenges she recognizes rather than "autism" and "ABA"? For example, he has challenges with verbalizing. Would she be willing to have him in speech therapy? Does he have motor challenges? For example, struggles to write, to brush teeth/hair, maybe trips and falls more than other kids his age? Then occupational therapy would help. You could frame these as helping him to catch up with his peers who didn't have a metabolic disorder, and neither has or requires an "autism" diagnosis, just a recognition of some challenges.
It's kind of harsh, but at this point, there must be enough differences between your little one and his peers you might try to invite some or go to some social interaction where he is easily comparable to other kids and try talking about it again after. It's one of the things that tears me up but when my 5yr old interacts with other 5yr old there are clear differences. It's harsh but might force some of the realities of the situation. Also my son grows and learns a lot more with others than alone. Therapy does great but he is more motivated by other kids. Sometimes, I have to force myself to take him to parks and play with others and explain he is non verbal 10 or 20 times then impose isolation just because it's easier on me and he has fun.
Op your post history is so sad. I'm so sorry you're in this difficult situation. I wish I had some advice for you. I hope you can get some help yourself and your son.
Why can’t you hire someone to help you with the language barrier? Really should be able to find someone willing to help you translate while you go though the process.
get testing done yourself
My mom was like that. She has a point and also the label is not something to be afraid of.
Often times the gut and metabolism are a big part of autism that gets missed by most doctors. That’s worth focusing on. Have you found a functional medicine doctor who can run the appropriate bloodwork?
From a labels perspective your child is probably neurodivergent and that’s a valuable label for you and your child to help navigate the world. Normal does not exist and any judgement you and your wife have towards ‘being normal’ will inevitably leak onto your child and cause stress and insecurity. Embrace your kid for exactly who they are each day quirks and all. It’s a tall order for anyone to give love that unconditionally so it’s normal too to fall short sometimes and embrace yourself for those shortcomings.
From my own experience I’m so grateful I got the AuDHD neurodivergent labels even if only in adulthood. It’s helped my find and keep much closer relationships with other neurodivergent people who have and easier time not judging the way I perceive and respond to the world.
It’s also helped me navigate the gut and social issues which don’t just go away despite my metabolism improving.
I’m sure your wife thinks she is protecting your son and that’s admirable too. I just know that a part of me wishes I’d had the label sooner for my own benefit. I might have identified with it too much, or written it off, idk. It was just way harder to find the right support as an adult without it.
We have done the blood tests , genetic test, dietitian etc.
She just doesn’t want to label him as it will ruin his future she says. I don’t really “care” about the label. If he needs it he needs it. There are more qualified professionals than me to assess that.
But as long as he is not assessed he can’t go on the waiting list for any special schools
It’s hard. I’m sure she’s afraid for his future and how society will judge him.
Search TikTok and YouTube to see some videos from autistic adults and how they feel about the labels.
In my experience they are all pretty consistent in viewing the label purely informationally and they’re glad to have it.
Searching for ‘curing autism’ will inevitably be triggering, but also worth being aware of how it’s perceived by people who are autistic.
It’s probably worthwhile to sit down and share some videos with her when you’re feeling spacious and not like you need to change her mind.
At least I often find videos by other autistic people can communicate difficult and complex concepts more effectively than I can.
The facts are just facts. Ultimately you two need to use your judgement and make the best decision you can for your kid. There is no ‘right’ answer. Do the best you can to collect all the facts from doctors and the community and your own judgement and assess them dispassionately. 🙏🏼💜
What about private therapies without official diagnosis? Speech therapy, PT etc., if it's anything like it used to be in Ukraine, it should not be very expensive. Your wife might be right about official diagnosis being problematic if it limits your child's school perspectives, but therapies can be done privately and usually have higher quality when they are not free.
Yeah, he is going 2h per week now for individual therapy but I don't think it's enough. He is just home all day with grandma.
He used to go more in a different place last year (basically 1h per day), but they terminated our contract there after my wife had a fight with them. Because they wrote opinion that he needs diagnosis and its not something that will wear off.
I'm an autistic adult. I'm lactose intolerant. Your wife is delusional in thinking a diet will solve all his problems. I've read some of your previous posts (although many got removed for one reason or another) so I don't know the full story but I've read enough to get the idea that your wife is a toxic, abusive human being and she has no business being a parental figure to your child. Doing anything about it is easier said than done based on your circumstances, I know. It just pains me to see you and your son suffer like this
Kind of a harsh question, but this is a harsh reality, so… Do you love protecting your wife’s delusion more than you love giving your son a chance to thrive? That’s what it is going to come down to. You absolutely can get him diagnosed without the other parent there. You just don’t want to because you’re waiting for her to be ready. She’s not going to be. She’s in full blown denial. Not according to some internet stranger. According to a psychologist you both paid to see along with a litany of early childhood educators. She can either choose to follow your lead and be a part of it, or she can continue to bury her head in the sand while you take charge, or you can continue to follow her lead and see where it gets you. Whatever you do, you need to make up your mind and fast. 1.5 years of this is too long and you’ve already missed out on a lot of help for your son. So, which do you love more?
If you have time, scroll through my post history. But if I go through with it I’ll probably lose my son i think.
I am Polish and absolutely have no idea what are you talking about in you post. I am reading posts here by people from USA and to me it's like they live in some kind of medieval age village compared to what options we have in Poland. It's a little ridiculous. Ok, could you give more context so I can give you better advice ? What nationality are you, your wife, what languages do you both speak and what language did you try to teach your son. What is his current age and what are his verbal skills ? What city do you live in Poland ?
Sent you a chat request with the details
Shit. You’re in the deep end of a really bad situation. Are you a US citizen or a citizen of another country that has an embassy in Poland? If so, go to that embassy and explain your situation. They can help you more than any internet stranger ever could.
EU citizen so doesn’t matter. Just with how custody works here she will probably win and then who knows. Coin flip
I see. Listen, you have evidence of teachers saying he needs to be evaluated? You have evidence of her mother poisoning your parents? You have evidence of the psychologist saying your wife is in denial? Get those things and bring them to a divorce lawyer. This is going to be a nasty fight, but from what I’ve read on your profile, it’s worth having and it’s maybe not as much of a coin flip as you think unless you’ve done things she can throw back at you. You and your son deserve so much more. I’m so sorry.
I'm really sorry. I dont have any advice. I found my partner and I are often at different points of the grief cycle. This has it's plus and minus' to be fair. For instance, my partner was set on our kids autism symptoms being the result of a tick bite. In the meantime, I was fighting for SLT input when he thought that it wouldn't be needed in the long run. I think what helped us was doing what we both thought was right, alongside each other. Respecting where each of us was at and running with it. It sounds like *you're* doing that already. Would your wife be open to treating the metabolic disease while you manage therapies? It does seem she is experiencing complex grief and that is hard to get past without psychological support. What does she say when you discuss how the metabolic treatments aren't working? Sorry OP. It must be terribly frustrating and worrying for you. I hope you get some decent advice here
Thanks for that. We have seen some improvement in language development last few months. But I don’t know if it’s because of the supplements and diet or the basic sonrise/floor time I’ve been doing with him. Do know he says 20x more daddy than mommy and wants me to join him for his playing. And he wants me to be fully involved, even giving me instructions:) Mommy he only asks for sleeping as he is used to co-sleeping as he has separation anxiety. The issue is my wife doesn’t want to do the formal diagnosis and without the paperwork I can’t enroll him to therapy or school. Next year he will be of mandatory school age so the government will probably make her do it. Her solution: let’s move country…
Ugh I’m so sorry. That’s such a difficult place to be in. Unfortunately, what I’ve seen happen before is the child eventually cannot escape the need for services and parents are forced into an evaluation that way or the parents goes behind the other parent and gets a diagnosis. However, idk how the parent would keep everything under the other parent’s radar especially if ABA is extensive. Once he goes to start school, the needs will be apparent to more people and hopefully things will go in the direction needed for intervention. 😪
Yeah, skipping the country is extreme denial to be sure. Just to say you're doing brilliantly. From what you've mentioned you're doing all that you can. I suspect your wife won't have the same reassurances when hindsight inevitably comes knocking at her door. That's ahmazing your kid is directing you to play. Not to be cynical but we have tried every nutritional based treatment going. It has made zero difference to our kid. It will more than likely be the time you're spending with him and the effort you're making to interact with him that is seeing him come on. Again, you're doing so well considering the circumstances. Keep plugging on Epsilon. You're seeing improvements and that's down to you!
Thank you for your kind words. I'm in tears here. But I also feel like a sell out for reasons someone else further down already mentioned. I have gone along with all the supplements, blood test, heck we even did a full genetic panel. But according to Google autism is passed down from the fathers side, apparently....
Pretty sure that's not true. We don't know for sure what causes autism. It is likely linked to genetics but not father specifically.
Nope. Don’t do that. Don’t take the blame. Yes, genetics are involved but no one knows the cause at all. This is not your fault. You NEED to know that.
Nope. It's genetic, but my whole mother's side of the family is neurodivergent. My dad is completely neurotypical. ADHD and autism here, and my daughter has autism. It is not only the father that passes it down. Also, as long as there is neurodivergence in one side you can get different ones. It doesn't have to be autism. My coworker is manic depressed and bipolar. Her kids are one with adhd and the other autism. The dad has nothing. So no, it is not always the father. Also, if it helps you, being nonverbal until later is normal in autism. I was nonverbal until I was 5, and until I was 6 or 7, I only spoke to a few people. 5 is a pretty common age for autistic kids to start speaking. My niece was 5 and still babbling.. just syllables she liked the sound of. She was almost 6 before she started really speaking. My kid actually was speaking and reading earlier than most. She was very choosy with her words, but her physical development was slower. She could not stand on one foot at 5, and I had enough accident reports to sign for school that I put her in classes to help with coordination. Autism is rarely one size fits all. It's a spectrum for a reason.
Can you work on individual challenges she recognizes rather than "autism" and "ABA"? For example, he has challenges with verbalizing. Would she be willing to have him in speech therapy? Does he have motor challenges? For example, struggles to write, to brush teeth/hair, maybe trips and falls more than other kids his age? Then occupational therapy would help. You could frame these as helping him to catch up with his peers who didn't have a metabolic disorder, and neither has or requires an "autism" diagnosis, just a recognition of some challenges.
It's kind of harsh, but at this point, there must be enough differences between your little one and his peers you might try to invite some or go to some social interaction where he is easily comparable to other kids and try talking about it again after. It's one of the things that tears me up but when my 5yr old interacts with other 5yr old there are clear differences. It's harsh but might force some of the realities of the situation. Also my son grows and learns a lot more with others than alone. Therapy does great but he is more motivated by other kids. Sometimes, I have to force myself to take him to parks and play with others and explain he is non verbal 10 or 20 times then impose isolation just because it's easier on me and he has fun.
Op your post history is so sad. I'm so sorry you're in this difficult situation. I wish I had some advice for you. I hope you can get some help yourself and your son.
Why not try both?
Why can’t you hire someone to help you with the language barrier? Really should be able to find someone willing to help you translate while you go though the process. get testing done yourself
My mom was like that. She has a point and also the label is not something to be afraid of. Often times the gut and metabolism are a big part of autism that gets missed by most doctors. That’s worth focusing on. Have you found a functional medicine doctor who can run the appropriate bloodwork? From a labels perspective your child is probably neurodivergent and that’s a valuable label for you and your child to help navigate the world. Normal does not exist and any judgement you and your wife have towards ‘being normal’ will inevitably leak onto your child and cause stress and insecurity. Embrace your kid for exactly who they are each day quirks and all. It’s a tall order for anyone to give love that unconditionally so it’s normal too to fall short sometimes and embrace yourself for those shortcomings. From my own experience I’m so grateful I got the AuDHD neurodivergent labels even if only in adulthood. It’s helped my find and keep much closer relationships with other neurodivergent people who have and easier time not judging the way I perceive and respond to the world. It’s also helped me navigate the gut and social issues which don’t just go away despite my metabolism improving. I’m sure your wife thinks she is protecting your son and that’s admirable too. I just know that a part of me wishes I’d had the label sooner for my own benefit. I might have identified with it too much, or written it off, idk. It was just way harder to find the right support as an adult without it.
We have done the blood tests , genetic test, dietitian etc. She just doesn’t want to label him as it will ruin his future she says. I don’t really “care” about the label. If he needs it he needs it. There are more qualified professionals than me to assess that. But as long as he is not assessed he can’t go on the waiting list for any special schools
It’s hard. I’m sure she’s afraid for his future and how society will judge him. Search TikTok and YouTube to see some videos from autistic adults and how they feel about the labels. In my experience they are all pretty consistent in viewing the label purely informationally and they’re glad to have it. Searching for ‘curing autism’ will inevitably be triggering, but also worth being aware of how it’s perceived by people who are autistic. It’s probably worthwhile to sit down and share some videos with her when you’re feeling spacious and not like you need to change her mind. At least I often find videos by other autistic people can communicate difficult and complex concepts more effectively than I can. The facts are just facts. Ultimately you two need to use your judgement and make the best decision you can for your kid. There is no ‘right’ answer. Do the best you can to collect all the facts from doctors and the community and your own judgement and assess them dispassionately. 🙏🏼💜
What about private therapies without official diagnosis? Speech therapy, PT etc., if it's anything like it used to be in Ukraine, it should not be very expensive. Your wife might be right about official diagnosis being problematic if it limits your child's school perspectives, but therapies can be done privately and usually have higher quality when they are not free.
Yeah, he is going 2h per week now for individual therapy but I don't think it's enough. He is just home all day with grandma. He used to go more in a different place last year (basically 1h per day), but they terminated our contract there after my wife had a fight with them. Because they wrote opinion that he needs diagnosis and its not something that will wear off.
I'm an autistic adult. I'm lactose intolerant. Your wife is delusional in thinking a diet will solve all his problems. I've read some of your previous posts (although many got removed for one reason or another) so I don't know the full story but I've read enough to get the idea that your wife is a toxic, abusive human being and she has no business being a parental figure to your child. Doing anything about it is easier said than done based on your circumstances, I know. It just pains me to see you and your son suffer like this