Struggling

ChapelHillSooner

ChapelHillSooner

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I posted in the HHS thread about my trip to Dallas with my son.

I made this trip because a couple people in the family have never met my 16 year old son. It was so hard. Also the flight home was harder than the flight out.

What I am having trouble wrapping my head around is that this was essentially a goodbye trip. Many of those people will never see my son again because I just can’t do that again. (I knew that going in.)

This is just not fair that that is the way it has to be.

This isn’t just about aunts and uncles (who are all nearing the end of their lives) but also my two remaining siblings. If they never come to visit (both have said they need to for a decade) they will not see my son again either. But the rest will definitely never see him again.

Sixteen is too young to say final goodbyes - not that my son is aware of any of that.
 
Sorry to hear that, CHS. As a parent of two autistic children, I totally understand the struggle of attempting to do something fairly normal (plane flight, dinner out with relatives, etc) and have it be far more difficult than anticipated, and then feel let down/exhausted after it's over. It's so hard when other people (particularly family members) don't understand or don't try to understand. It also sounds like you feel pretty isolated when it comes to your family. We all want to belong and to feel understood and supported, and it doesn't seem like you got any of that on this trip with your son. And now you're experiencing grief on top of grief. Sending you lots of good thoughts today.
 
ChapelHillSooner said:
I posted in the HHS thread about my trip to Dallas with my son.

I made this trip because a couple people in the family have never met my 16 year old son. It was so hard. Also the flight home was harder than the flight out.

What I am having trouble wrapping my head around is that this was essentially a goodbye trip. Many of those people will never see my son again because I just can’t do that again. (I knew that going in.)

This is just not fair that that is the way it has to be.

This isn’t just about aunts and uncles (who are all nearing the end of their lives) but also my two remaining siblings. If they never come to visit (both have said they need to for a decade) they will not see my son again either. But the rest will definitely never see him again.

Sixteen is too young to say final goodbyes - not that my son is aware of any of that.
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This may not be exactly what you're dealing with but family estrangement is becoming more and more common in these divisive times. Fortunately, there are a lot of good resources to help with it. Some focus on learning how to move forward. Some on creating dynamics in which reconciliation can be possible somewhere down the road. A good therapist should be fluent in this, but there are also support groups in most communities, as well as online.

Just one example of how this is now being discussed openly -- Why So Many People (Myself Included) Are Experiencing Family Estrangement
 
tallheel95 said:
Sorry to hear that, CHS. As a parent of two autistic children, I totally understand the struggle of attempting to do something fairly normal (plane flight, dinner out with relatives, etc) and have it be far more difficult than anticipated, and then feel let down/exhausted after it's over. It's so hard when other people (particularly family members) don't understand or don't try to understand. It also sounds like you feel pretty isolated when it comes to your family. We all want to belong and to feel understood and supported, and it doesn't seem like you got any of that on this trip with your son. And now you're experiencing grief on top of grief. Sending you lots of good thoughts today.
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I wouldn’t say they are not supportive. They just don’t know what to do to help. You literally have to have your hands on my son often and nobody except me (and his mom) feel comfortable doing that.

And the aunts and uncles would not be physically able to help as they are all in their 70’s and 80’s.
 
My GF has two friends who married who have a very Autistic son who is now an adult. He is so difficult because he's fully grown that only his dad can really manage to subdue him when he becomes difficult when they are out. They barely leave their house except to work and even then they need to stagger their schedules so he is not alone.

She doesn't know what they are going to do when they become too old to be with him since they really don't want (nor can they afford) to put him in a place where he won't hurt anyone or himself.

I'm sorry you're struggling, my friend. I don't have anything profound to say except I know you're not the only loving parent who is dealing with these issues. And that's not even considering the family aspect.

I always offer an empathetic ear to anyone on these boards and I will do the same here. I might not be in the same boat but I'm pretty good at listening. You're not alone so DM me if you need/want to just vent.
 
NOVAHEEL13 said:
My GF has two friends who married who have a very Autistic son who is now an adult. He is so difficult because he's fully grown that only his dad can really manage to subdue him when he becomes difficult when they are out. They barely leave their house except to work and even then they need to stagger their schedules so he is not alone.

She doesn't know what they are going to do when they become too old to be with him since they really don't want (nor can they afford) to put him in a place where he won't hurt anyone or himself.

I'm sorry you're struggling, my friend. I don't have anything profound to say except I know you're not the only loving parent who is dealing with these issues. And that's not even considering the family aspect.

I always offer an empathetic ear to anyone on these boards and I will do the same here. I might not be in the same boat but I'm pretty good at listening. You're not alone so DM me if you need/want to just vent.
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I think one thing I can be thankful for is that my son is very mild mannered. He gets frustrated at times but he is very passive with people.

His problem is more that he is always on the move. We can be at a restaurant snd he will just bolt off running and clapping. Or maybe there is an echo so he starts yelling to hear the echo. It isn’t anything really bad but just constant inappropriate behaviors.

His other big problem is that he will constantly break things. Not out of anger but out of not knowing what he is doing is destructive. For example, he took all of the screens from our windows in back because he wanted the spline to wave around.

He has ruined all of our furniture because he is 270 and will just plop down on it. Not intentionally destructive but destructive nonetheless.

Good natured but just hard to deal with especially in public. A weekend like this one is just a constant struggle to get him to behave in a somewhat appropriate way, making sure he is not tearing things up, etc. The only respite was while I was in the hotel room with him. I paid $1500 to go there and spent half the time in the hotel room or the swimming pool with just him.
 
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I have little to offer here except that I'm glad that ChapelHillSooner feels comfortable enough to open up to us here. I think it's important in life to be able to share our wins and losses, our joy and pain, our jubilation and sorrows with an empathetic soul. Life is full of hellos and goodbyes. Family, friends, and acquaintances come and go. I have learned, perhaps a bit too late with some, that goodbye should not necessarily be the focus of any human connection. Rather, it is the moments spent together before that endpoint.

I am so sorry that you and your wife are going through this. Remember to take care of yourselves as well. It's difficult to be a caregiver if you yourself require care. Please continue to share and try to find time for counseling. Are there any support groups of similarly situated families in your area? I would think connecting with those who can relate would be beneficial.

Take care, my friend. We're all rooting for you and your family.
 
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