This phrase in a news story kind of jumped out at me...

[Kelli in TN]

I am bored and my internet is acting wonky and won't let me watch my Netflix movie. :glare:

 

So I was reading random news story at CNN. I started reading accounts of how people are changing their lives to afford rising prices, yada, yada, yada...

 

Anyway, this story is about a dad who rides his bike to work. But that is not what this post is about. It is about the following phrase which I copied and pasted, and then highlighted the phrase that I found perplexing.

 

It keeps me sane -- I get time to ponder, unwind from work, and relieve stress (due in part because I am losing my son to autism).

 

Losing his son? To autism? I understand autism is a serious diagnosis, but why would someone refer to that as losing their child?

 

Told you I am bored.

[Jumping In Puddles]

Wow, your right! I have never heard anyone say that before and it was so completely out of thin air too :confused:

 

EDIT: wow, I can completely see where this father said he was "losing his son" to autism now. Thanks for all of the people who posted personal stories of heartache.

[*anj*]

Maybe the treatments they've tried aren't working and his son is actually getting worse?

 

That's the only thing I can think of. If that's what he meant, then it's really sad.

[Kelli in TN]

Maybe the treatments they've tried aren't working and his son is actually getting worse?

 

That's the only thing I can think of. If that's what he meant, then it's really sad.

 

Maybe I am overthinking it. When I think of losing one's child I picture St. Jude's Hospital.

 

To me, if there is a heartbeat there is hope. But perhaps he means losing in an emotional sense and I am taking it too literally.

[Danestress]

Maybe I am overthinking it. When I think of losing one's child I picture St. Jude's Hospital.

 

To me, if there is a heartbeat there is hope. But perhaps he means losing in an emotional sense and I am taking it too literally.

 

Yes, I would assume that's what he means - the way someone might feel that they have "lost" a parent to Alzheimer's or a teenager to drugs. I would imagine there are times that a parent feels more hopeful and other times he feels he's "losing" his son or losing some emotional connection to his son or something like that.

[Kelli in TN]

Yes, I would assume that's what he means - the way someone might feel that they have "lost" a parent to Alzheimer's or a teenager to drugs. I would imagine there are times that a parent feels more hopeful and other times he feels he's "losing" his son or losing some emotional connection to his son or something like that.

 

That makes sense.

 

I sometimes take things too literally.

[*anj*]

Maybe I am overthinking it. When I think of losing one's child I picture St. Jude's Hospital.

 

To me, if there is a heartbeat there is hope. But perhaps he means losing in an emotional sense and I am taking it too literally.

Yeah, that was my first thought too. But now I think he means that his son is drifting away and not responding to treatment.

 

Just recently I had a conversation with a friend whose little boy has autism. He was fine til 18 months, then it started. He had learned some words, but one by one he lost them. They were getting really concerned because he was regressing. Finally they started using a natural doctor, drastically changed his diet, and they are finding the unconventional treatments to be helpful.

 

So maybe there's a connection.

I don't know.

I have to make potato salad and some baked thing now.

I don't even feel like it. That's why I'm sitting here talking to Bored Kelli about a little boy whose father made a weird passing comment in a newspaper article.

[HSMom2One]

I can't relate to autism, but I have a son who suffers from bipolar disorder. There was a time some years ago that I was talking to another mom and I remember telling her that I had "lost" my son to mental illness. What I meant by it was that I have a son, but the son I knew and loved had disappeared. At that time I didn't know if I'd ever get him "back" and so I felt as though I had "lost" him. Fortunately medication has helped him come back three times now after severe episodes, but I know that if it continues I really may lose him for good.

 

So I share this to shed some light on what that father may have meant. Maybe the autism has progressed to the point that he just doesn't recognize the son he once had.

 

Blessings,

Lucinda

[JFSinIL]

It could mean he is losing what he hoped his son would be - the son he was looking forward to taking to Little League, teaching to drive, sending to college -

typical stuff we all assume our kids will (or could) do, in time. Instead the future for his son is unknown - will the child respond to any treatments? What will be his quality of life? Will he ever live independently, much less marry or have his own kids? How will society treat this child?

 

Been there,. done that. My son with autism will be 17 this Sept. That dad needs his bike rides!

[Kelli in TN]

That does make sense. I guess I should have related to it better since I suppose at one time I could have said that I was losing my child to OCD.

 

I think I was just taking the phrase too literally.

[DB in NJ]

I agree that it's a bizarre way to put it, but then again, I haven't walked in his shoes. Maybe that's just how he feels, and he was speaking off the cuff to the reporter?

[asta]

That does make sense. I guess I should have related to it better since I suppose at one time I could have said that I was losing my child to OCD.

 

I think I was just taking the phrase too literally.

 

I don't think you were taking it too literally at all.

 

Google "murder autistic child" (without quotes) and see what comes up.

 

It is truly sad when the hopes of a parent become more important than those of a child.

 

 

 

Is it hard to deal with a quirky kid? Yes, it is. There are no guarantees in life that a baby will be this way or that way. If we want a guarantee, we don't make the leap at all. If we do make that leap, though, we often learn invaluable lessons about ourselves.

 

 

asta

[Pam "SFSOM" in TN]

I don't think you were taking it too literally at all.

 

Google "murder autistic child" (without quotes) and see what comes up.

 

It is truly sad when the hopes of a parent become more important than those of a child.

 

 

 

Is it hard to deal with a quirky kid? Yes, it is. There are no guarantees in life that a baby will be this way or that way. If we want a guarantee, we don't make the leap at all. If we do make that leap, though, we often learn invaluable lessons about ourselves.

 

 

asta

 

We do make the leap eventually, but first we grieve. And I have to say, though my son is only mildly on the spectrum and not so's you'd notice anymore, that full-blown autism is much more terrifying than just having a "quirky kid." (Although I'm not disagreeing with the gist of what you're saying -- parents do have to just get over themselves and do what is best *for the child.* But first, they might say things like, "I'm losing my son.")

[snickelfritz]

the son he's holding doesn't look to be that old. It's hard to tell, since he's got on a jacket and isn't looking at the camera. But, it could be a fairly new diagnosis.

 

(Although I'm not disagreeing with the gist of what you're saying -- parents do have to just get over themselves and do what is best *for the child.* But first, they might say things like, "I'm losing my son.")

[abbeyej]

Well, some kids are born with signs of autism, but for others, the symptoms actually appear later and a child really does *lose* some of his functions (language mostly) and personality. I can only imagine how painful it must be for people whose children appear "normal" and have typical language development for the first year and a half or two years of life and then that ability to make eye contact or use language begins to *go*. It *would* be like losing your child to see their personality and communication ability retreat into themselves.

 

And of course, autism is a spectrum -- for some kids the signs are subtle (because of luck or great therapy or both), and for others they are totally incapacitating.

 

I don't have an autistic child, but I've mentioned before the neurological issue ds had a few years ago. He went (literally overnight!) from being my sweet, happy, bright 6yo to being a small body wracked with guilt, anxiety and indecision. It took his every waking moment. His personality was totally submerged by the anxiety and guilt. He was aware enough to recognize the disconnect between what he knew of the world and what he felt, but there was nothing he could do. I don't think I've ever been so scared in my entire life as I was that first week. (Once he got antibiotics for the underlying condition, he began to improve within a few days. Full recovery took a couple of months, but just seeing an improvement gave me *hope* to replace my sheer panic.) ... Anyway, if there are parents for whom autistic symptoms come on like that -- perhaps not as quickly, but totally morphing who their child has always been into someone he or she wasn't before... Well, in my experience, I totally feared I was "losing" my child. He wasn't the child he had been before. And he knew it too! Maybe that was the worst of it. I had this image in my head all through that time of my child sinking under water -- perhaps with a layer of ice -- and me reaching for him from a boat above. Being so close, seeing each others hands, and having him sucked further and further under and away from me. It as the same sort of panic as seeing him gasp for breath...

 

My baby recovered. But the pain if I had seen him sinking away and he couldn't get back... To the old personality that I knew was the real him, to the old potential... Yeah, I'd call that a "loss". :(

[sadiegirl]

I think that I would relate it to a similar comment my mom made when my grandma started going downhill due to Alzheimer's...she knew Mamaw was physically still with us but THE Mamaw that we knew we were slowly losing. You have to learn to adapt yourselve to that new individual and how that illness changes everything in your life.

[Niffercoo]

I agree that he could be referring to having a child developing in a typical manner, and then the child regressing and losing their language, social abilities, etc.

 

Neither of my children regressed, per se. They were always, from the beginning of their lives, autistic. However, a year and a half after her diagnosis, I let Reece get one more vaccine. She didn't speak or interact for three days afterward. It was so frightening. I thought I had lost her! She was inside herself and I couldn't get to her. Thankfully she emerged from that period and went on to continue to grow and develop, but it was very frightening.

 

Hearing that your child has autism can be devastating. I know that it was very hard for me to handle at first. I have come to acceptance (and my children are pretty high functioning for the most part), but every now and then the anguish and fear overcomes me or my dh. For other parents whose children have more severe autism, I think it must be so much harder. I can't imagine never hearing my child say "I Love you!" or having a child who completely freaked out if you tried to reach out and touch them. You want so much to connect with your child... in the simple ways people take for granted.

 

Hopefully, the author of this article will be able to come to acceptance with his son's diagnosis, and will be able to move on! I pray that for him!

[angela in ohio]

Dh is the principal at a school for children with phyical disabilites and autism. There is a family right now that IS losing their son to autism. Each day he becomes more violent, and he will enter a facility soon, and they will have lost him - living with him, taking care of him, being a part of his life in any meaningful way...

 

I think as homeschoolers we see or hear about so many children diagnosed with autism who are on the higher end of the spectrum that we forget about what it can look like at its most severe.

 

I wouldn't immediately assume ill of this man for saying this phrase, as we don't know the situation. Sure, maybe he is selfishly missing "normal"; or maybe he is living a pain beyond our understanding.

[ClassicMom]

I think that some of you may be taking what this father is saying out of context. His heart is breaking and perhaps he uses this time to prepare himself to go home and face it all again with a smile; day after day. I am sure that he loves his son more than life itself. But there has to be a break from these children where you can just think.

 

When your child is Autistic, you do lose that child to the disease is some respect. It is much different than most other neurological disorders. And for many of us, these children were born normal and acted normal and developed normally up to a certain point. We "lost" those children that we had hopes for dreams for and grew to know. All of a sudden we had children with no spark in their eyes, no language skills, no social skills and in our family's case, a child who has very massive meltdowns at least 10 times a day even on the strongest of medications.

 

Someone said that this man needs to just "get over himself" but he can't. He is faced with the lifelong needs of a child that on most days, on the best days may not even be able to give back a smile. This child may be one that hits his head on the wall for stimulation. The screaming can be mind-numbing. Many of you have written about temper-tantrums, but you have no idea what an Autistic meltdown is like and we don't know how severe this man's child is.

 

I know that if I didn't need two new knees, I would need that bike ride myself. It is hard to watch our children fight through life like this. It is hard to watch their siblings listen to yet another meltdown. It is heart-wrenching to wonder just what lies in store for this little person that you love so much.

 

I apologize if I sound harsh, but this one hit a nerve. Unless you've walked in the shoes of parent of handicapped children; please don't judge. We go through hardships that regular parents have no idea even exist. I have two beautiful sons and I love them more than I could ever imagine and have seen how God even has used them as blessings in not only our lives but the lives of others. But taking care of an Autistic child and a profoundly MR child with CP changes a person's way of life forever.

[Pam "SFSOM" in TN]

Someone said that this man needs to just "get over himself" but he can't.

 

Classic Mom, please re-read what I said about getting over oneself. I really didn't mean that he needs to get over himself, I meant that parents do come to a place where they move through the grief stages and focus their energies on the child. And in context, I posted that right now the man is in a grieving state. Please don't think I meant anything but that we grieve and then we move on to doing, daily, what is best for the child.

 

My words were in response to another post, and they were an unfortunate choice. My son is not very far along the spectrum, but I do know a tiny bit of what the grief feels like. Eventually, the energy was more directed outward than inward -- that's all I meant. I'm really sorry that my words cut you. They were intended to defend the man in the OP, not to in any way make you sad.

[HSMom2One]

Thanks you for the clarification on that one, Pam. I also misunderstood your meaning when I read it, but now it makes more sense. I would only add that all too often with parenting disabled children (of any age really) that grief has to be on hold because we have to jump in and take care of the needs of the child and the family. Life goes on and there isn't always the time or the place to deal with grief and emotions. Eventually there just has to be a safe place and time for letting down and processing those feelings. Unfortunately some parents aren't able to do that, for whatever reason, and they just push the feelings back.

 

I'm thinking like another poster that maybe the reporter caught this father at a moment of letting down and dealing with his personal grief.

 

Blessings,

Lucinda

[Pam "SFSOM" in TN]

Thanks you for the clarification on that one, Pam. I also misunderstood your meaning when I read it, but now it makes more sense. I would only add that all too often with parenting disabled children (of any age really) that grief has to be on hold because we have to jump in and take care of the needs of the child and the family. Life goes on and there isn't always the time or the place to deal with grief and emotions. Eventually there just has to be a safe place and time for letting down and processing those feelings. Unfortunately some parents aren't able to do that, for whatever reason, and they just push the feelings back.

 

I'm thinking like another poster that maybe the reporter caught this father at a moment of letting down and dealing with his personal grief.

 

Blessings,

Lucinda

 

You know, when I read Classical Mom's post, I was all, "I said WE parents have to get over OURSELVES!" But then I checked, and that's NOT what I wrote at all. I meant we, but mostly I meant *me*, as in, I had to get over myself and my picture of what was supposed to be this perfect child, gently and kindly reared, who was so cute and sweet and smart but had this big ol' looming something going on that I. Could. Not. Fix. And I meant that parents *do* get past the initial personal horror, not that they *should*.

 

I'm glad I got a chance to clarify, because what I wrote was not at all what was in my head.

[ClassicMom]

I wasn't necessarily writing directly at you even though I did quote you. I think that a lot of people do feel that way because I have heard it from people that have kids without disabilities. "Just get over it and move on".

 

But I am glad that you clarified. Yes, you are right. We do need to get over the initial shock and I know in my case with both sons, I went through the actual stages of death. It's a death of the child you waited for for 9months and with my second son, it was the death of the child that I raised normally for over two years.

 

I also agree with the poster who said that the writer caught him during a moment of "down time" when he was just "Mr. X". Not "Johnny's Dad". A moment of reflection and a time to think and decompress.

 

Pam I didn't mean to strike at you personally. It was just the tone of the overall conversation. I know that Angela understood because I know her and her husband. I was just writing from my perspective and wanted people to know what it was like to have a son that was severely affected and to understand where this man may have been coming from. :grouphug:

[clarkacademy]

In a since you may feel that way. I had a little boy who potty trained at 1 and 1/2 he spoke full sentences by then too. He grew up on the stage doing pageants, he modeled, he was social I think from birth. He followed his older sister into ballet once and the loving teacher wanted him to stay he was so beautiful. Trying to dance. She was sure someday he would dance Prince Charming. He loved books, he knew colors, he was very bright that simple. By the age of 3 he was back in diapers, he no longer spoke, he screeched. He knew no colors anymore. He jumped around flapping his hands on tip toe and if you moved something he would have a melt down. Through countless therapies an d many drugs he is better. He will never be that child again.

At times I have felt like he died. My son went away and I was left with this little stranger that I was clueless on how to care for. I don't really think anyone can understand unless they have been there with their child. Not the kid in the extended family, or the one you know of but your kid. Caring for him is a 24 hour job did I also mention the stomach problems, the heart defect, the seizures too. It never stops, not if your sick, not if your tired, you have to watch him 24/7.

I guess I still feel like autism took my son. I understand how that dad feels and I am glad he found some type of outlet.

[summer]

I can explain this.

 

Children with Autism (remember there are different types on a spectrum) get worse as they get older and can be more and more out of touch with reality and the world and unable to recipricate anything. It can reach a point where they must go to a place for round the clock care at a certain age..depending on size and severity of course.

 

You love your child, and then your child spends half the day screaming for no apparent reason. When your child is 40-50 pounds, this might not be a problem. But then eventually, your child is 100 pounds, and then 150, and screaming 75% of the day..or mumbling to themselves and spinning in circles not answering you and so on.

 

I find no one has a clue at all what it is like to have a child with autism until they have been there. No amount of reading about it can possibly explain what it is like to be there. And there are different types of autism that present in different ways. (for example, my 45 pound son only spent 30 minutes laying on my bed screaming last night...a kind of scream that was basically getting the sound out, but throughout the day, there were various meltdowns). My child is very mild compared to most. He has the most mild form of autism to stiill be diagnosed. To understand a little more, check out boards specifically about Autism. It would be nice to have more people understand what it is like and perhaps, be kind and helpful when we try to be in public and our child suddenly decided to melt down, spin, scream, or hold a bag over his head the entire time.

[summer]

I agree with Clarksacademy.

 

My son is so smart and so beautiful and so sweet. He would laugh and make everyone so happy. He is a very early reader and so on. He has much milder autism that Clarksacademy's son, but at times, I wonder where my son is and why I cannot reach him. Stupid people like to think you can discipline this away..you cannot. I love my son so much and I also know that for kids like him, there is a heightened rate of suicide and such. I am so worried what his future will be like.

[JFSinIL]

I agree with Clarksacademy.

 

Stupid people like to think you can discipline this away..you cannot.

 

I was one of those stupid peole back when my s-i-l would bring her kids, one a four-yr-old with full-blown classic autism, to family gatherings.

 

Later, one of my fraternal twins was born and age 18 months stopped gaining language - a different flavor of autism but still on the spectrum.

 

Now I get it!

[Doran]

Yes, I would assume that's what he means - the way someone might feel that they have "lost" a parent to Alzheimer's or a teenager to drugs. I would imagine there are times that a parent feels more hopeful and other times he feels he's "losing" his son or losing some emotional connection to his son or something like that.

 

Losing as in losing the son he'd wished treatment would help. Or losing ground. Losing who the son once was. Losing the battle against such a difficult illness (and now I find myself questioning whether autism should be referred to as an illness). Losing hope. Whether you lose someone physically or mentally, it is still a loss.

 

Clearly, Clarksacademy and others have a more personal understanding and have put it better than I could.

 

 

Hugs to all.

[Pam "SFSOM" in TN]

I wasn't necessarily writing directly at you even though I did quote you. I think that a lot of people do feel that way because I have heard it from people that have kids without disabilities. "Just get over it and move on".

 

But I am glad that you clarified. Yes, you are right. We do need to get over the initial shock and I know in my case with both sons, I went through the actual stages of death. It's a death of the child you waited for for 9months and with my second son, it was the death of the child that I raised normally for over two years.

 

I also agree with the poster who said that the writer caught him during a moment of "down time" when he was just "Mr. X". Not "Johnny's Dad". A moment of reflection and a time to think and decompress.

 

Pam I didn't mean to strike at you personally. It was just the tone of the overall conversation. I know that Angela understood because I know her and her husband. I was just writing from my perspective and wanted people to know what it was like to have a son that was severely affected and to understand where this man may have been coming from. :grouphug:

 

I didn't feel struck, no worries. Thanks for letting me clarify. And I sent you a message, but it sent before I could sign it. :grouphug: