How important is this?
MaxandRuby
member
DS2 gets fitted for a wheelchair next month and also has a video swallow study scheduled the following day. Out of all of his upcoming specialists appointments these are the only 2 I want DH to come to. Unfortunately, May is a hectic month for him at work (military and unable to get out of most anything).
I told him he has no choice but to come to the swallow study appt in case what happened last time happened this time (plus with 2 people DS2 is comfortable with we may get better results). I just changed this appt to one that DH can attend.
The potential problem is the wheelchair fitting appointment. I'm not sure how many people on this board have their child(ren) in wheelchairs. How important is it for my H to be there? The appointment is to fit DS2 to a chair, pick out the chair that will be ordered, and order the chair. It is supposed to last 1.5hr. For some reason this is just a decision that I think is big enough that I don't want to do it without his input. FWIW - I do not ask him to go to 99% of DS2's specialist appointments.
Re: How important is this?
From a logistical point though - not very important. In my experience they do measurements, ask about physical abilities to find the best type of chair to fit the need, ask about living environment and transportation, and then let you pick a color out of the available options.
I would say that if you are the person who will mostly have to 'deal' with the wheelchair then I am not sure how relevant your DH's input would be.
To him, this may be more like you asking him to go to BRU and help you pick out a stroller. KWIM? How long will you have to live with what you choose? Maybe just have him on standby so you can call him if something comes up?
Thanks ladies.
As someone suggested, I do think this is more of an emotional support thing for me then him really truly needing to be there. I will be the one dealing with it the most because I'm the one who takes him to and from most things and when DH deploys I will be the only one dealing with it. I don't want to come off as DH not wanting to be there for his son. Shoot, I had to tell him the diagnosis while he was deployed. I really think I'm pushing for him to be there as a support for me. It just so happens that next month is hellaciously busy for him and there are many things that he will not be able to get out of. As for rescheduling the appointment, I don't really want to do that as I am hoping the wheelchair comes in before DH deploys.
I was talking to my DCP about it since she knows where we will be going. She stated that if I am not ready to see DS2 in a wheelchair then it will be very advantageous to have someone else there. Plus, I'm not so sure DS2 is going to deal all that well with strangers being all in his face and touching him and basically doing what they need to do. DH may be able to calm him down better then I will if I do actually get upset by seeing DS2 in a wheelchair.
To be honest, I am not sure how I am going to feel when I see him in a wheelchair. To be even more honest, I was truly hoping that we would never get to this point. I have asked my MIL if it is possible for them to visit that weekend and go to the appointment with me as a plan B. I can completely do this on my own if needed.
From what the DCP and the pp stated, it doesn't really sound like it is 100% imperative that DH is there. I really think this is more important to me as an emotional/acceptance issue of having to even go this route.
I am not sure how long he will require a wheelchair in general or how long a wheelchair tends to last (I have 5yr in my head for some reason). As for calling him, I will certainly do so if he can't come; however, his cell coverage on base sucks at best so no guaranties I'd actually get a hold of him.
I think someone like your MIL might be even better. I always appreciate when there is someone slightly less emotionally involved at moments like that, to just act very cheerful and matter of fact. When DS was admitted last summer for a major seizure flare-up, MIL and DH were there and DH had to leave the room when DS was given rectal valium. It was good to have MIL there to just be a calming presence, especially since I am one who tends to take emotional cues from those around me. I typically don't get upset if the nurses and docs are pretty matter-of-fact.
I can tell that ordering a chair is emotional and truly understand why. We have danced around it for DS because of his hypotonia. When he does start walking, he is going to tire easily, maybe just for a few years, maybe always. Right now we have talked about a medical stroller, just something to take with us on outings. But in a few years we may need to think about a chair. But the idea, the words, the mental image, is very powerful emotionally. I would probably be the same way you are, wanting DH to be there for that reason. But like I mentioned, it might be good to try to demote its emotional importance mentally, and just take a friend or MIL like it was any old appointment.
((hugs))
I have been thinking more about this and you should tell him you need him there.
I get that his work is busy, but this is an emotionally important day for you. He's military right? Can they fire him over this or something? I think not.
Don't just suck it up. He is home now and needs to go for you. You have enough on your shoulders when he is deployed. ((hugs))
Well, I have told him multiple times that I would like him to go. I also told him no matter what he HAD to go to the swallow study. That got scheduled for May 8 and I quickly found out he was absolutely unequivocally unable to go that day (change of command ceremony that day and it is mandatory attendance) so I got it changed to May 15. He is going to try and come to the wheelchair fitting BUT I don't know if they will let him off work 2 days in a row. He is currently in his APART window (acronym may be off) and he is scheduled to fly multiple days so him being off work too much can F up that schedule and him getting through this APART stuff. He is up for promotion right now and we need him to do whatever is necessary to get that promotion so we can continue with the Army and more importantly the insurance to cover DS2's needs. Seriously the insurance is the only reason why I support him staying in the military. Ugh. Oh, and as for your question on if they could fire him. I suppose not BUT it could make him look bad which could affect the next review he gets which could affect promotion.
I did tell him, knowing it could possibly shoot me in the foot, that if I could only have him at one appt (swallow study or wheelchair fitting) that the swallow study was more important. He knows the dates of everything and knows that I want him there. He is going to see what work will do but there are no guaranties. :-( Blech. I really wish the military was more family friendly.
I am so sorry, it is obvious to all of us that this is very emotional for you. Does your H know? Maybe it is for him too and he 'wants' to avoid it?
I don't know, we all know my H has issues with dealing with the girls stuff.
He is at a new job and has absolutely no PTO. And he works 6 days a week. He does have off during the week now sometimes so that is nice (for me, not for him lol) but even if M has to have some crazy surgery soon, he wont be able to go.
Maybe try to think about this on a smaller scale..it's just a device fitting.
I'm sorry I wish I could be of more help. I hope if he can't go that someone else who can offer support, etc. will be there. I'm sure the facility will be VERY accommodating to you with every aspect of it, including the emotional ones.