Can a parent be unfazed by a diagnosis?

[GoVanGogh]

This should probably go on the SN sub-forum, but I am putting here since it gets more traffic.

 

Out of curiosity:

Do you think a parent can be unfazed when their child gets a diagnosis, especially when the diagnosis is a neurological/physical disability? 

How does getting a diagnosis change parenthood? marriage and/or relationships?

 

[Crimson Wife]

Yes, there are many deaf parents who don't see their child's condition as a disability. I've seen some posts on another group actually CHEERING the diagnosis, as sad as that is.

[OneStepAtATime]

Not sure what you mean by unfazed. If you mean accepting the diagnosis and still treating the child in a fashion consistent with the way they had been treated before, yes, I have seen that.

In some cases, the diagnosis may create negative or sad or panicky feelings at first, then relief at finally understanding the issues but ultimately a change for the positive in the way the parents interact with each other and their child.

This really depends on the people involved, though. My DH did not want evals. I finally forced evals. He initially was resistant but finally came to embrace what was said and to mostly improve his interaction with the kids (although he still slips back into suck it up, stop babying them mode upon occasion with regard to accomodations and remediation).

[8filltheheart]

I was unfazed, but that is simply bc putting a name to it was a relief. Not having a diagnosis doesn't change what is readily evident and visible. It actually made my parents back off by they thought his behaviors were due to parenting, not multiple co morbid conditions.

[Dmmetler]

I agree with 8. Another thing is that a DX may make a DC eligible for needed services that a family cannot otherwise provide. The difference between "autism spectrum disorder" and "quirky kid who has too much eye contact for an autism DX" can make a big difference in accessing services and supports. If you have been struggling to pay for OT out of pocket, it's helping a lot, and the DX means your insurance or the local school district or a state special needs plan pays for it, that's a BIG relief.

[Guest]

I agree with 8FillTheHeart as well and I could have written her post myself, with the exception that more than a year later my parents still tried to imply that some of the behaviors were normal. Such is life!

 

My position on this is that you accept the diagnosis and then you deal with it. We all process things differently! In my world, you accept what is going on and you put your focus on finding ways of dealing with it.

[Lecka]

I was unfazed at the moment of getting an official diagnosis.  I took it well at that moment, for the same reasons 8Fills mentions.  Yes, the same with me, even as seeing it as a relief, and a blessing not to have to keep searching for an answer and also a bit of doubt about if I was just a bad parent for him.  

 

But did the fact of the existence of the special needs or special situation leave us unfazed?  NO!  Not at all!  Massive restructuring of many things, massive change in life goals, massive effect on my marriage and family life, etc. etc. etc.  

 

I have been very sad, too, and it comes and goes.  

 

But there are a lot of conversations I could have where, in context, I would describe myself as not fazed by the diagnosis.  I went in a room and they told me, and I nodded my head, kind-of like, "yes, I know," and one of the people said something like "you knew coming in, didn't you?" and I said that I really did already know.  I had kind-of known for months.  I was fazed in moments of realization that happened late at night looking at things on the Internet.  

 

But the day of the diagnosis?  Really not so much.  I was also very proud of how well my son did that day, so that made it be a good day for me.  

 

Oh, I agree with Dmettler, too.  I took my son to an autism clinic, and I knew that if he was diagnosed, he would qualify for ABA therapy.  If he was not diagnosed, I had no idea what the future held, I had no Plan B.  It was a pretty hard time for me honestly, I needed the help that I got really badly.  I felt brave like I could manage either way, but really hopeful to get help and an answer.  

[GoVanGogh]

OP here.

I hesitate to share too much as I don't want this to be a spouse-bashing.

I was - and am - very thankful to finally get a diaganosis, to have a name to go with what we were dealing with.

But at the same time, I am struggling so hard with the diagnosis and am currently in therapy to work through some issues. My question was one that has come up in therapy lately.

We received a late diagnosis of atypical cerebral palsy, after years of me pushing DH and the doctors that something was wrong. Our child sailed through a cp screening as a toddler, so we thought that had been ruled out. When we finally found out a few years back, DH just said, "Yeah, I always thought he had cp." :confused1:  Then why did he fight against knowing? Why did he say to not open Pandora's Box? He knows the issues our child was facing then and is facing now. I felt then - and still do - that he was burying his head in the sand.

DH has attended the same doctor appointments and neuropsych appointments as I have. He says, "All is good, I just want to focus on the good." So do I. But I just feel that he is in denial and not dealing with the bigger picture. We just got the neuropsych report back last week and the doctor said that our child has the most severe case of aphasia they have ever seen and that we have lost years and years of valuable therapy time. I am the one that has been trying to teach this child how to write for years, without knowing that they have a major language disorder. (Child can converse on an adult level, as per np evaluation. But written expression is severely impacted.)  I have spent years banging my head against a wall and pleading with DH and doctors for more testing. I don't get how DH can just shrug and say all is well.

My therapist says DH is in denial, as he won't talk about the day our child was born. I have no memories of the birth as I was unconscious at the time. He has never answered any of my questions about that day. DH insists that he doesn't remember that day and that he isn't in denial today. I am just trying to figure out if that is really possible, to just embrace a cp diagnosis and go on about life.

[Guest]

GoVanGogh, I don't have any words of wisdom to share. I can only say that men see things and process things much differently than we as women do.

 

My husband had difficulty accepting that there may be something wrong with our boys. I had to point things out to him as I was researching. We went for evaluations about a year and a half later and by then we were both prepared for the diagnosis. My oldest, 9 1/2 at the time, was also aware of the reasons for the evaluation (my other son was only 4) and I shared the results with him when we got home. We had watched the movie of Temple Grandin's life and we had discussed autism and my suspicions. I just explained to him at the time that nothing has changed, he is the same boy, and that now we can all understand certain things better. We all took it for what it was, a challenge we needed to find ways to tackle.

 

:grouphug:

[Crimson Wife]

My DH vacillates between "oh, she's fine" and "is she ever going to get better?" depending on how she's acting on the specific day. Two steps forward and one step back has been the reality of DD's improvement. Neither denial nor assuming the worst is helpful IMHO.

[Guest]

Neither denial nor assuming the worst is helpful IMHO.

I agree! In my relationship with my husband I am often the overly paranoid one. My husband's calmer approach often helps ground me. Most often men are more of the attitude, worrying about what's in the past won't change anything. It's what we do from here that matters. Just a different way of thinking!

[8filltheheart]

Neither Dh nor I were surprised by the diagnoses (ds has been diagnosed with Aspergers, odd, ocd, add, and high anxiety.) we used to think he would be able to adjust to adulthood and have a career. The transition to adulthood was fraught with changing courses bc he has not been able to make that leap. He is very dependent at 23. He works full-time as a donation greeter at Goodwill even though he has close to 60 hrs in college credit with all As and 1B. He had constant emotional meltdowns in college and he would completely shutdown. He has a high IQ and near photographic memory and can read insanely fast.....those are the reasons he did so well, but he did n.o.t function. Holding a job where he would be responsible for anything major or where expectations shifted from day to day would not work.

 

We have learned to just go with the flow. He is not going to "get better." He learns coping strategies very slowly. He is just going to progress at his own rate and when he gets there, he gets there. If he doesn't, we have plans to make sure he is provided for if something happens to us. That said, it isn't easy bc our ds has a difficult personality and is not easy to live with.

[kbutton]

Neither denial nor assuming the worst is helpful IMHO.

 

This is my answer to the OP, but it's not about the OP's spouse. I would answer this way whether or not she gave additional details.

 

I agree with this, and it's nice if someone has a friendship or other support person to help them balance those two options out.

 

I think of unfazed as responding to it like it's all just a part of life, and incorporating the news into your life without a lot of emotional angst. I don't really interpret unfazed as doing nothing, not reacting, and not changing anything about your life.

 

I don't think that not talking about it except to say that everything is fine is unfazed. I think it's denial. Maybe not even denying the diagnosis, but denying that anything should be different in response to that diagnosis (we'll just continue to love this child anyway, etc.). Accepting a diagnosis means that you accept what needs to be done about it too. I mean, if we were driving on a flat tire and didn't fix it, we're just going to damage something over time. It doesn't matter how aware I am of the flat tire or whether or not I keep saying, "Gee, we have a flat tire. Cool." That's not unfazed. That's denial.

 

**Edited out two parts since that weren't contributing--I don't want to stir a pot.

 

[Guest]

nm

[MomatHWTK]

I don't think a therapist can ever get a clear picture of someone not in the room for the therapy because everything they know of the person will be second hand information.  People respond to information differently and in their own time.  I would not make the focus of my own recovery about someone else's response.  We can only change how we think and respond.  KWIM?

 

Whether it is possible to be unfazed or not, your focus needs to be on how you handle it.  I think it is healthy to seek out someone who can help you process the many emotions you are feeling. Dealing with a disability in a child is very difficult.  :grouphug:

[GoVanGogh]

I agree! In my relationship with my husband I am often the overly paranoid one. My husband's calmer approach often helps ground me. Most often men are more of the attitude, worrying about what's in the past won't change anything. It's what we do from here that matters. Just a different way of thinking!

But how does one get to that way of thinking?

I don't worry about the past, but can't let it go of it either. I have a great deal of anger at our former doctors. Add in, I have PTSD from our child's birth. My therapist says that I need to hear about our child's birth, to be able to put all the pieces together so I can put it behind me. But my DH won't talk about it, even though he knows the therapist has said I can't move on until I have those pieces. (Which is why therapist said DH is in denial and not that he has accepted diagnosis.) I feel stuck. I don't need to hear from DH that all is well, because it isn't. It will be someday, but it isn't right now.

[Tiramisu]

:grouphug:  :grouphug:  :grouphug:

[MomatHWTK]

I would probably look for a therapist that could help me without creating conflict between me and my spouse. Have you ordered copies of the medical records from the birth?  What would your therapist say if your DH hadn't been present at the birth, that you are just out of luck because you can't get that information?   It would seem to me that a good therapist could help you without creating new problems in your life. :( 

[Guest]

But how does one get to that way of thinking?

I don't worry about the past, but can't let it go of it either. I have a great deal of anger at our former doctors. Add in, I have PTSD from our child's birth. My therapist says that I need to hear about our child's birth, to be able to put all the pieces together so I can put it behind me. But my DH won't talk about it, even though he knows the therapist has said I can't move on until I have those pieces. (Which is why therapist said DH is in denial and not that he has accepted diagnosis.) I feel stuck. I don't need to hear from DH that all is well, because it isn't. It will be someday, but it isn't right now.

GoVanGogh, I don't normally like making generalizations. The comment I made I actually read a long time ago in one of Dr. Laura Schlessinger's books and with men I have known (and I have had more friendships with men than I have with women) I have found it to be true. My goal for my comments was to hopefully divert your attention to a more constructive way of thinking but I would not participate in a men bashing thread if that is what this turns out to be. I don't feel that us discussing your husband would be respectful to someone we know nothing about or constructive. I feel that MomatHWTK offered some really good advise. All I can say is that especially SN kids need their parents to have a united front. You need someone by your side when advocating for your child and that should be your life's partner and father to your child. You can choose to make yourself sick about things you may never understand or you can move past them and put your focus on the child and what happens next. I don't know your faith but if you are a praying woman, I would pray for strength and wisdom, to be able to endure and make wise choices on what lies ahead. I sincerely wish you all the best with all my heart :grouphug:

[Lecka]

Would your husband go to the counselor with you?  Maybe if he heard from the therapist that it would be good for you to hear this information, he would be more likely to share it.

 

Another thought -- what if he messed up somehow, or thinks he messed up, by not advocating for you?  My husband felt a little like that, b/c he gets intimidated by doctors and nurses, he is intimidated by the hospital setting.  He also (at that time in particular) had interpersonal skills more suited to the military, and not so suited to speaking to doctors and nurses.  

 

I was worried about this ahead of time b/c I was having twins, and knew it was a higher-risk situation, and I ended up needing to hire a doula for my comfort level (my mom came, too).  I was really worried that my babies would be taken to different places, and that one of them would be alone.  

 

Well, at one point, my little son had (very minor in its way, very very minor) TTN and was in the special care nursery.  The doula said to my husband "tell them you want to hold him."  She thought it would be an allowable thing.  Well, my husband did not get the nerve up to ask to hold him for an hour or so.  I think my mom might have seen him at that point (when she was bringing my older son) and then he did do the thing where he took off his shirt and held the baby.  

 

But he did not handle that very well, and I was a little irritated with him.  But I also knew to expect it b/c of how he was with my older son, so I felt like -- well, I have the doula to serve that purpose.

 

I also wonder if he might be more comfortable if he told the therapist and then she told you.  That might be easier for him.

 

But I do wonder if he feels guilty and like maybe some of it is his fault for some reason.  Probably for no reason at all!  But maybe he does feel that way.

 

I am just throwing that out as a thought. 

 

I think it sounds like he is in denial, too, most likely.  But he might be ashamed to talk about it, too, it is possible.  

 

My husband is also, usually, a really take-charge kind of person.  I have only seen him like this in a hospital setting. 

[geodob]

Their have been studies that have shown that parents response to their child's diagnosis of a 'disability'?

As triggering the 'grieving process'.

Though behind this, is the whole mythical identity that parents create of their child as an adult?

An identity that reflects their future potential.

Dreams of their child as an adult?

But what a 'diagnosis of disability' can do?

Is shatter this mythical identity of their child as an adult !

What could be, will never be ?

 

Where their is a grieving process, for the loss of this mythical identity that they have created for their child?

While their is this grieving process for this 'Loss'?

 

The next important stage, having lost this 'identity'?

Is to move on, and create a new identity.

 

Though another way to understand this, might be an 'acquired disability'?

Where one grown up and established a personal identity, that we have come to know as ourself.

But as result of a suddenly 'acquired disability'?

This personal identity that we knew well, has suddenly disappeared !

Which will never return.

Where the grieving process is an important art of accepting the loss of this 'identity'?

So that with this acceptance, one can move on to creating and embracing a new identity.

[Tiramisu]

Lecka just triggered a strong memory of how dh was after my dd's surgery. He is the type to jump in when something has to be done and is very caring toward people in need, but when he first saw dd after her surgery, swollen and unrecognizable, he completely froze. And I don't mean that figuratively. Also, since dh's father died when he was the only one present, it's very hard for him to go into a hospital room when other relatives and friends have been sick. These memories made me think it's more than likely that GVG's dh was traumatized during the birth and is dealing with his own PTSD. Perhaps for him, a big part of the trauma could come from him feeling like he was conscious one, watched it happen, and couldn't help, or could have done something different. I find with my dh, when he freezes up emotionally, it's triggered by feelings of guilt, ironically in situations where he really had no responsibility. 

 

GVG, I don't know if this will help you. I know you have a lot to deal with and work through, but perhaps your dh's appearance of being unfazed doesn't actually represent what's going on inside of him. Maybe the dx has brought his own issues to the surface and he's dealing with them his own way. Maybe he's truly unable to talk about what happened. Maybe he's repressed his memories to some extent because it was so traumatic, as a kind of survival instinct. The therapist saying he's in denial might not convey the full picture of his own pain and makes it look like it's a choice for him not to talk, when if fact it's probably a lot more complicated.

 

I hope you both find the healing you need and I will pray for you.  :grouphug:  :grouphug:  :grouphug:

[8filltheheart]

I agree with momatHWTK and Cricket.

 

It could also be true that your dh really doesn't have clear memories of what happened. I was with my ds and dil when my dil went into pre-term labor at 27 weeks. They were both completely overwhelmed and just going through the motions of what the Drs were saying. Ds was not processing info like he normally would. He was terrified for both his wife and his dd. They were both panicking and frightened.

 

I have had a baby die. Clear thinking and clear memories don't typically go hand in hand with traumatic situations. My dh never wanted to discuss the death of our dd. It was his way of coping. Bc he coped differently from me does not mean he was in denial. Now, yrs later, talking about it is more traumatic for me than when it happened. I needed to talk about her then. Now, I prefer not to. I can relate more now to how he felt then.

 

Your dh might find the situation emotionally difficult to discuss.

 

(I was typing while Tiramisu was posting. She expressed what I was thinking.)

[Guest]

...or maybe he is even trying to protect you from something that he may know or feel might be much more painful for you to cope with.

[LaughingCat]

Wow, I had a huge immediate NO! reaction to the statement "the therapist has said I can't move on until I have those pieces. "  -- IMO that is a completely false statement.  My emotional healing is never dependent on something I can only get from other people.  Certainly sometimes other people or more information might make healing much easier but lack of that does not STOP me from healing.   If that is the type of thing your therapist is telling you, then she is helping to keep you stuck not to heal.

[justasque]

 

My therapist says DH is in denial, as he won't talk about the day our child was born. I have no memories of the birth as I was unconscious at the time. He has never answered any of my questions about that day. DH insists that he doesn't remember that day and that he isn't in denial today. I am just trying to figure out if that is really possible, to just embrace a cp diagnosis and go on about life.

 

<gently> Why don't you believe him?

[MomatHWTK]

Wow, I had a huge immediate NO! reaction to the statement "the therapist has said I can't move on until I have those pieces. "  -- IMO that is a completely false statement.  My emotional healing is never dependent on something I can only get from other people.  Certainly sometimes other people or more information might make healing much easier but lack of that does not STOP me from healing.   If that is the type of thing your therapist is telling you, then she is helping to keep you stuck not to heal.

 

 

This is what I was trying to say.  My therapist has been very clear from day one that I can only control myself, not others around me. 

[GoVanGogh]

I would probably look for a therapist that could help me without creating conflict between me and my spouse. Have you ordered copies of the medical records from the birth?  What would your therapist say if your DH hadn't been present at the birth, that you are just out of luck because you can't get that information?   It would seem to me that a good therapist could help you without creating new problems in your life.  :(

But he WAS at the birth, so a hypothetical situation where he wasn't isn't applicable. I do have all medical records and have read them many times. I have so many questions that I feel like I need answered about that day. My memories of it are all wonky and out of place - for example: I feel very deeply that DS was born at night, but he was born mid-morning. I have attempted to get help for the PTSD several times now and this therapist isn't the first one that has said I need to get details of the day in order in my head for my memories to make sense.

The therapist hasn't created conflict between my DH and myslef. We are actually closer now, after I started this round of therapy, than we were before. It certainly isn't a new problem that has come up just since therapy.

[GoVanGogh]

<gently> Why don't you believe him?

 

He sometimes cries when I bring it up. Most often, he gets up and walks out of the room and won't acknowledge the question.

He has said on several occassions that I should be thankful that I don't have memories and wasn't aware of what was going on. That also leads me to believe that he does remember but won't talk about it.

 

8FillTheHeart, you mentioned that he was likely overwhelmed and may not have clear memories.

I know he was very overwhelmed that day. In the course of our child getting the late diagnosis, I have spent countless sleepless nights up watching every single video we have of our child. I came across a 30 second video - I think DH accidently hit record because the camera angle is off - where a nurse is talking to DH about what is going on with our child, as our child is laying in an incubator in the background. I can tell in my DH's voice that he was very overwhelmed, as I have never heard his voice sound like that before. The nurse's voice is very strong and clear, but DH responds in a series of "okay, okay, okay" in such a quiet, barely audible voice. 

I am sure DH doesn't have clear memories, but I need any that he has, even just snippets.

[GoVanGogh]

Wow, I had a huge immediate NO! reaction to the statement "the therapist has said I can't move on until I have those pieces. "  -- IMO that is a completely false statement.  My emotional healing is never dependent on something I can only get from other people.  Certainly sometimes other people or more information might make healing much easier but lack of that does not STOP me from healing.   If that is the type of thing your therapist is telling you, then she is helping to keep you stuck not to heal.

 

 

This is what I was trying to say.  My therapist has been very clear from day one that I can only control myself, not others around me. 

 

I have terrible nightmares and flackbacks to our child's delivery and I don't know what is real and what isn't real. I need someone that was there that day to tell me what is real and what isn't, because right now it is just a jumbled mess that I can't process. That is why the therapist was saying I need those pieces of information.

I was conscious in the delivery room when my child stopped breathing. I started screaming, then lost consciousness. I have talked to my OB about it several times and she has filled me in on what happened with me during that time, but I am missing what happened to our child from the time I lost consciousness until I woke up the following day. As it is now, I am stuck on the "How could this have happened? Why does my child have cerebral palsy?" I can't make sense of it.

 

That is really a side point to the original question.

Can a parent truly not be affected by a diagnosis, especially one like cp? I can't even process it, let alone not be affected by it.

[Tiramisu]

He sometimes cries when I bring it up. Most often, he gets up and walks out of the room and won't acknowledge the question.

He has said on several occassions that I should be thankful that I don't have memories and wasn't aware of what was going on. That also leads me to believe that he does remember but won't talk about it.

 

 

I have PTSD issues. I thought it started with being on a plane that went on fire but it was probably there from my sometimes scary childhood and just made me pre-disposed to future incidents. I don't want it to seem as though my relatively little issues compare to what you're going through. But I had a psychologist tell me that given the things I have gone through, I probably have a lot of hurt and anger but that I've successfully repressed it. I don't know if all psychologists would agree with the idea of successful repression, but I think he meant that I had become a normal (LOL), emotionally healthy, well-functioning adult. He thought it might not be worth it to dig it up at that time.

 

FWIW, I also have a young relative who had a traumatic childhood. A therapist pushed her on some issues and it caused MAJOR problems. She was then taken to a psychiatrist who temporarily treated her with medication but recommended waiting until she was ready to talk about the heavy issues. A few years have gone by, she is now grown, has a good job, and is in a healthy relationship, and I just found out that she went back to the psychiatrist on her own because she wanted to start talking about some of the stuff from her past.

 

This is my long-winded way of saying, maybe it's not that he won't talk about it, maybe he can't talk about it. Or, he just isn't able to talk about it yet. I'm sure you and your child are the most precious things in his life.

[luuknam]

I have terrible nightmares and flackbacks to our child's delivery and I don't know what is real and what isn't real. I need someone that was there that day to tell me what is real and what isn't, because right now it is just a jumbled mess that I can't process. That is why the therapist was saying I need those pieces of information.

I was conscious in the delivery room when my child stopped breathing. I started screaming, then lost consciousness. I have talked to my OB about it several times and she has filled me in on what happened with me during that time, but I am missing what happened to our child from the time I lost consciousness until I woke up the following day. As it is now, I am stuck on the "How could this have happened? Why does my child have cerebral palsy?" I can't make sense of it.

 

That is really a side point to the original question.

Can a parent truly not be affected by a diagnosis, especially one like cp? I can't even process it, let alone not be affected by it.

 

I'm not a CP expert by any means, but I'm going to guess the bolded answers the bolded. Or, alternatively, bad stuff happens sometimes. Sometimes there just isn't a why (as in, why your kid, why you, etc). And even if there is a why, it may be useless. C has a family history of autism spectrum disorders, so the why is probably 'genetics'. It doesn't change anything though.

 

I was unfazed by the actual diagnosis (though C only has an educational autism diagnosis, and not a medical one). It was obvious he was different from when he was a young baby, and given family history, I saw that diagnosis coming for years before he actually got that diagnosis. Sometimes I'm mad though about stuff that's hard for him that I feel shouldn't be hard for him.

[GoVanGogh]

Yes, but no.

Our child has an aphasia diagnosis, which would mean that they had to have had a stroke at some point. Likely the month before premature birth, per the specialists.

I know it was likely just a random thing. But I can't make sense of that.

[PeterPan]

GVG, knowing how tender my dh is on some things, I can imagine that if he had been in your dh's position he would be equally traumatized and unable to communicate.  Nuts, he can't even talk about a root canal.  I'm so sorry, for your sake, that it's not satisfying.  It's a horrific sorrow to have to think through and process.

 

You said you got a hold of the OB.  What about the ped who cared for the baby?  Could you possibly visit with a nurse and let them explain to you what *typically* happens in those situations?  Even though it might not be precise, it might be enough to make your memories make more sense.  

 

I had a bad memory from my birth with dd.  It was nothing serious, but it was something that bugged me in a hurtful way for a lot of years.  It was only 10 years later, when I was having ds, that the midwife reframed that memory for me and helped me move on.  I don't think it's too late to want that reframing and healing, and I hope someone can help you.  It sounds like your dh is, himself, so horrifically traumatized, he just can't help.  Fwiw, when my dd interviewed Holocaust survivors, she found that for the most part they couldn't talk about it.  If they did, it was only for a few minutes out of the whole hour.  It was just too intense.

 

Also, not that you asked, but I think the men experience added guilt of it being their fault (even though it's not), they're supposed to protect you (and the baby).  That would be very hard to process for a man.

[Guest]

He sometimes cries when I bring it up. Most often, he gets up and walks out of the room and won't acknowledge the question.

He has said on several occassions that I should be thankful that I don't have memories and wasn't aware of what was going on. That also leads me to believe that he does remember but won't talk about it.

Yes, but no.

Our child has an aphasia diagnosis, which would mean that they had to have had a stroke at some point. Likely the month before premature birth, per the specialists.

I know it was likely just a random thing. But I can't make sense of that.

GoVanGogh, I would like to repeat something I said up thread. Is it possible there is something he feels the need to protect you from? Some of your words quoted above just make me wonder!

[Lecka]

This is really anecdotal, but I have heard of times when someone DOES get the story from another person.  And, I have heard of that person just not being helped like they thought they would be, not getting closure they thought they would get, not having their questions answered the way they thought they would.  BUT -- they had the question answered of, if they knew that way, would it help.  It was just -- it didn't help.  

 

Then I have heard of a person who got the explanation, and it didn't fit with their memory, they couldn't match it with their memory.  The person had the same dreams and instinctive memory.  It was like they believe the person, but it didn't change what was going on in their dreams and their feelings. 

 

So I do not count on being given the information to necessarily do everything you want it to do.  

 

But I think the idea to ask a nurse what would typically happen -- I think that is a great idea.  Maybe a nurse could go over the hospital records with you.  Maybe that would get you close.  

 

Your husband with the best intentions might not be the best rememberer, too, with how he was acting in the video.  I don't see him as someone who is going to give you a really great description of that time.

 

Plus it does sound like it might be traumatic to him to go into it. 

 

I would see what your therapist thinks, though, since she has been helpful to you. 

 

And, I'm so sorry.  

 

 

[Tanikit]

I was 12 when I was diagnosed with type 1 diabetes - I had been extremely sick and was almost comatose by the time I entered hospital. I would not have survived much longer had they not picked it up then as I was in diabetic ketoacidosis and had been for some time. 

 

My mother dealt with what came, but I know later in my adult life she told me that she had felt desperate - that she had wondered about whether anyone would ever want to marry a type 1 diabetic and she felt I would never have grandchildren for her. I guess much of a parents concerns are about their child - those are the ones that get addressed and spoken about - I am worried about my child, how will he/she cope, what will this mean for her/his future, what should I be doing now to care for my child and give him/her the best life going forward. 

 

I think parents need to deal with these issues, many as they crop up and others with more thinking. However, what probably affects the parents is the loss of their own dreams, their own hopes. A limiting of their own freedom and an increase in responsibility. This is actually similar to what many children with the diagnoses must go through - learning to accept the limitations they have, to accept what they cannot change and the wisdom to change what they can. With children at some point you have to let go even if there is a serious diagnosis, but when the diagnosis comes is not the time to let go - that will probably take a lifetime. Many diagnoses need to be dealt with on a day by day basis - this is what I have today... this is what I can do about it, this I need to just accept.

 

When it comes to one's partner - they are also dealing with the same things in their own way - my father handed it over to my mother. He never did quite understand the medication I was on or what could happen if things went wrong. I think his job was more to support my mother who was actually dealing with it and support her decisions (and mine as I got older). I don't think anyone in our family could answer whether my Dad was unfazed by my diagnosis or not - he didn't talk much and unless it was handed to him as his problem (if he needed to step in and help when I was low or whatever) then maybe it didn't faze him because he couldn't do anything. Denial is a protective mechanism, but he may also just be more accepting of things he cannot change. Try asking a man what he thinks can and should be done rather than how he feels about it - and then just listen and you may be able to see how he feels through actions, moods and changes in his behaviour - just don't read into it what isn't there - learn to let him go too - his own feelings are his responsibility, not yours - if he chooses to share them or not to is entirely up to him.

[Heathermomster]

My best advice for you is to give yourself time to process.  REST...Find supports through whatever your religious affiliation happens to be.  Make it a priority to be alone a couple of hours per week.  Meet a friend for coffee or dinner.  Whatever happened, I promise you that the doctors were doing all they could to save your baby's life.  Once you get through the shock and awe of this experience, I feel like you will be in a mental state to help others cope.  You work hard taking your boy to therapies.  You are so brave.  I wish that you could see that.

 

ETA:  DH makes me crazy when we discuss our son because he totally overlooks the SLDs.  With DD, DH is super because he totally overlooks the HD and helps me take care of her.  His apparent unfazedness is both a blessing and a pain.  DH balances my crazy.

[MomatHWTK]

:grouphug:

[Guest]

Heathermomster :grouphug: :grouphug:

[texasmama]

:grouphug:  :grouphug:  :grouphug:

 

So much hurt in this thread.  I wish I could hug everyone who has experienced hurt.

 

OP, I had a traumatic birth experience with one of my kids, and the baby was not harmed.  It took ten years, lots of telling my story, and a corrective birth experience with a subsequent baby to heal some of the PTSD associated with the experience.  With my kid who has ASD and LD's, I have wracked my brain for what might have caused this (other than genetics).  With my child with a birth defect which still affects her and will for a lifetime, I wonder if this or that thing I did while pregnant caused it (we have no family history).

 

None of this is the same as your situation, and I wish I knew what was going on with your dh that has prevented him from being willing or able to share information with you.  Please accept this virtual hug from me.   :grouphug:   You have experienced a lot of trauma.

[J-rap]

I'm so sorry you're going through all of this, but I'm glad you feel that you and your husband are closer now.  I wouldn't keep pushing him to tell you what happened.  It happened.  He's not at a point where he can talk about it, and he might not ever be.  You can still heal without knowing exactly what went on (despite what the therapist says).  Probably your husband didn't even know exactly what was happening anyway.  Medical records would be more accurate.  But either way, I think you can move on without that knowledge, if you have to.  (Even though I really do completely understand wanting to know what happened so very much.)

 

My own husband was the type who never made a big deal about anything.  He wouldn't deny a problem, or pretend it didn't happen, he was just very practical and and knew very wisely how to move forward.  I used to hate that!  I learned to really respect his approach, over time.  But, I think that might be different than what your husband is going through.  Hopefully he will heal with time.  People work through trauma in their own way.  It's nice if a couple can do so together, in the same way, but sometimes they can't.  And that's okay too.

 

I would try to just focus on the fact that you now have a diagnosis, and can now move forward with it.  How old is your child? 

 

One night when my husband was sleeping 5 years ago, 1/5 of his brain died.  It was the language center of his brain.  When he woke up, he could not speak or write or read or understand any language at all.  He didn't even remember what language was anymore.  It was severe, complete, global aphasia.  He was about to run for political office.  What a change!  It was absolutely horrible, and I never thought I would get through those early years.

 

Five years later, he is beginning to speak in sentences again.  He is still working on grammar, and lots of other things.  It's a work in progress.  If your son can already speak well, that is fantastic!  The rest can improve so much with therapy.  We have met many children with aphasia on this new path we are on.  Hearing their stories of learning language is incredible and very inspiring!  The things we know about the brain now are amazing. 

 

I wish you courage and strength and peace on this path!  It gets much, much better.

 

 

 

 

[Guest]

 

So much hurt in this thread.  I wish I could hug everyone who has experienced hurt.

 

:iagree: :grouphug:  :grouphug:

 

[Guest]

This was posted for a limited time only and has now been removed.

[Heathermomster]

GVG, are you feeling better?  How are you?

[Guest]

You have been on my mind also. Hope things are getting better for you!

[SporkUK]

I hope things are going better at the moment and you and your husband find more peace and understanding. I second/third getting your records if you can and going through with someone knowledgeable. I got mine for 3 of mine, it was mostly helpful (though there was a gap in M's - just before she was born to the day after is blank - having that gap filled would have been very helpful as I had been put under for manual placenta removal). I don't think it was a needed part of my healing but just getting the papers can be helpful for people in taking back as much control as possible for a painful and random event. 

 

To answer your original question, I was unfazed  really I was pleased  - but I have multiple disabilities, married to someone with multiple disabilities, have many disabled friends and family members, so none of it was outside of the experience I already had and had been expecting and working for it for years. I imagine it would have been different if I were entirely able with little experience or connections to the disabled communities or hadn't faced what many other disabled parents face of having so much pressure to explain and prove to many medical people, health visitors, and social services types on how we would ensure our disabilities didn't get in the way of our kids being 'normal' and blaming it everything on us in some of the oddest ways (I still have a filed letter from an actual doctor trying to say my child had a significant speech delay and trouble understanding questions because I have a USian accent - even when speech issues ran in my partner's family and his only articulation problem was th-fronting which his father and the entire local dialect has but I do not and both I and my partner are neuroatypical with conditions that often affect language - that doctor wanted it to be anything else so she could complain about our parenting and home educating) and seeing that flipped to us being the best experts and role models for them as such 'successful disabled people' in the beat of a diagnosis. Systems are off like that.  

 

[GoVanGogh]

Thank you so much for the feedback and personal experiences.

 

I am starting to feel better. DH and i have talked quite a bit lately. He still skips the time period that i feel i am missing - will talk about time before then jump ahead a week after birth. I find that odd. But i do feel more at peace.

We have had such a nightmare experience getting from birth to diagnosis that i often feel i live in an alternate universe. My Dh being so "comfortable" with the diagnosis just fuels that surreal feeling. I think he finally understands, at least, where i am coming from and why it affects me the way it does.

 

Thank you again for letting me "talk" it out. It has just been so much to process.

[Guest]

It's good to hear from you GoVanGogh :) Glad to hear that things are getting a bit better for you!

[IsabelC]

Geez, there are so many possibilities with this one. Parent could be still reeling from the news. Parent could be devastated inside, but keeping herself together for the sake of the kids and/or not wanting to reveal too much right here and now. Parent could have known for a while that 'something was up'  and now feels a huge sense of relief that there is an official diagnosis and organized support available. In some cases the parent could be pleased to have the diagnosis because she values certain aspects of the 'disability'. I've even seen parents who appear to be 'label-competitive' and have some sort of pride about the number of diagnoses their kid/s can collect. And some parents are ambivalent with a tendency to vacillate between different reactions. Everyone processes things differently.