Getting nervous about DS

Hi Terri,

Sorry I'm a bit late to the party. I have a fully-dependent, non-ambulatory, special needs daughter so I thought I'd chime in a bit. I am my daughter's sole caregiver under normal circumstances. When I had my DS I made arrangements for someone else to provide care for my daughter, in my home, while I recovered. This meant that I didn't do any of the physical stuff related to my daughter's care. No pushing, pulling, repositioning, lifting, moving, etc.

I was worried that my daughter would miss the playing, snuggling, etc. and have a difficult time with the changes but I found alternate ways to still have those types of interactions with her and she was remarkably (surprisingly?) adaptive.

The biggest challenge I found was honoring the weight limitations during recovery. Even though I was healed on the outside, and I was feeling better with strength and stamina, I had to remind myself that the human body still requires 4 - 6 weeks to stitch together soft tissues internally so I needed to avoid anything over 10 pounds for 6 weeks.

You'll do great. Your son will do great! It's only a few short weeks out of the rest of your new healthy life. You've got this!

Thanks Sandy! I will just have to keep reminding myself about healing on the inside. I just told DH this morning that I am going to have to have someone at the house through the night while he is at work. My son had a bm at 9pm and at 2:30 am. There is no way I could turn him over, reposition or tug his clothing back on after surgery.

When I get down to it it boils down to me not liking to be dependent on others. I know I am going to have to be or recovery will be longer, not to mention the higher possibility of complications.
 
I know someone who had surgery who was in a very similar situation to yours. Her son went to a special needs camp for 2 weeks. The change seemed to be good for him and I know it saved her sanity because it was going to driver her crazy to see things needing to be done and not being able to do them!
 
Thanks Sandy! I will just have to keep reminding myself about healing on the inside. I just told DH this morning that I am going to have to have someone at the house through the night while he is at work. My son had a bm at 9pm and at 2:30 am. There is no way I could turn him over, reposition or tug his clothing back on after surgery.

When I get down to it it boils down to me not liking to be dependent on others. I know I am going to have to be or recovery will be longer, not to mention the higher possibility of complications.
Your dependency will be very short lived if you embrace the "rules of recovery" and exercise great care in compliance. If you try to take shortcuts, you'll get yourself, and therefore your son, in a world of hurt. With that bottom line in mind, I'm confident you'll do what you need to do.

OVER plan for his care. Build in redundancy, so there is zero risk of getting caught up short. You'll be fine.
 
My child with special needs is close to 60 lbs and very tall for his/her age. I had (and continue to have) a very, very tough time with diaper changes, although my child is mobile and despises being cleaned. It's more of a wrestling match sometimes. LOL

I agree with @Elizabeth N. about the over-planning. My state has no help at all for parents of special needs children, there is no Medicaid waiver, and we make "too much" (bwahahaha) for Social Security. Therefore, I was on my own. I am so glad that it sounds like you at least have a little help during recovery. Please gather all the help that you can, and you can always cut back if you don't need it.

Do you have support, such as a church, extended family, or a parent group, nearby- just in case things go differently than planned?

I will say this, it's been very difficult to prioritize my own care along with my child's. I had to admit to myself that I have a very difficult job as a parent and recovery was going to be harder for me than it was for others. I had to learn to build in more time than others to rest, as parents like us get much less rest than the average person. Life unfortunately doesn't stop or slow down much when we are caregivers.
 
My child with special needs is close to 60 lbs and very tall for his/her age. I had (and continue to have) a very, very tough time with diaper changes, although my child is mobile and despises being cleaned. It's more of a wrestling match sometimes. LOL

I agree with @Elizabeth N. about the over-planning. My state has no help at all for parents of special needs children, there is no Medicaid waiver, and we make "too much" (bwahahaha) for Social Security. Therefore, I was on my own. I am so glad that it sounds like you at least have a little help during recovery. Please gather all the help that you can, and you can always cut back if you don't need it.

Do you have support, such as a church, extended family, or a parent group, nearby- just in case things go differently than planned?

I will say this, it's been very difficult to prioritize my own care along with my child's. I had to admit to myself that I have a very difficult job as a parent and recovery was going to be harder for me than it was for others. I had to learn to build in more time than others to rest, as parents like us get much less rest than the average person. Life unfortunately doesn't stop or slow down much when we are caregivers.

@ProteinSnob OMG I understand the wrestling matches! How old is your son? We do have him on a waiver and that is very helpful, we get someone for 4 hours 3 days a week to help. Hopefully I will have a couple weeks of recovery before school is out for summer, but after that I will have to someone here for about 16 hours a day, everyday. I have little family support as mine and DH's parents have all passed. I do have a fabulous niece that is 33 yrs old and only 5 minutes from me. my neighbors told me this evening that they will be more than happy to come over and help some. That makes me feel better because sometimes I may just need him changed or moved from bed to living room. Dr. Inman, my surgeon has already told me she doesn't want me lifting him until at least 6 weeks out maybe longer. She will write whatever she needs to for his caseworker she told me.
 
16 hout
@ProteinSnob OMG I understand the wrestling matches! How old is your son? We do have him on a waiver and that is very helpful, we get someone for 4 hours 3 days a week to help. Hopefully I will have a couple weeks of recovery before school is out for summer, but after that I will have to someone here for about 16 hours a day, everyday. I have little family support as mine and DH's parents have all passed. I do have a fabulous niece that is 33 yrs old and only 5 minutes from me. my neighbors told me this evening that they will be more than happy to come over and help some. That makes me feel better because sometimes I may just need him changed or moved from bed to living room. Dr. Inman, my surgeon has already told me she doesn't want me lifting him until at least 6 weeks out maybe longer. She will write whatever she needs to for his caseworker she told me.
Hon,look at what you said here. "Hopefully a couple weeks" is NOT nailed down. 16 hours a day is not 24 hours. In 5 minutes, well, people DIE in 5 minutes. See how many holes you have? Listen to me. Not only do you need NO HOLES, you need OVERLAPPING COVERAGE......not by minutes, but by HOURS.

YOU completely are OUT OF THE PICTURE for at LEAST 8 weeks. What would you do if you were totally absent, like transported to Antarctica? Make THAT happen. Not for a week or two. For at LEAST TWO MONTHS MINIMUM. Do this or cancel your surgery. Get it?
 
@Terri , I am worried that you are going to lift your son, hurt yourself, then end up in the awful position of having to put him somewhere else for care while you recover from a traumatic, avoidable injury. That would be WAY worse, would it not?

You only get ONE chance to recover properly from major surgery. The DS is MAJOR SURGERY. You will have weight lifting restrictions afterwards. They are NOT optional. They are not suggestions.

I did not put on my bra for 8 weeks after my DS. I did not wash my own hair or ass for two weeks. How do you plan on cleaning someone ELSE's ass if you cannot even clean your own? I needed a chair in the shower because I could not stand through the time it took me to shower. My husband stood in there with me to help me.
 
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Hon,look at what you said here. "Hopefully a couple weeks" is NOT nailed down. 16 hours a day is not 24 hours. In 5 minutes, well, people DIE in 5 minutes. See how many holes you have? Listen to me. Not only do you need NO HOLES, you need OVERLAPPING COVERAGE......not by minutes, but by HOURS.

YOU completely are OUT OF THE PICTURE for at LEAST 8 weeks. What would you do if you were totally absent, like transported to Antarctica? Make THAT happen. Not for a week or two. For at LEAST TWO MONTHS MINIMUM. Do this or cancel your surgery. Get it?
@Terri I don't mean to sound like I'm ganging up on you here, but I agree with what the vets have posted. You need more help and you need to plan in case of complications.

I'll just go on record right now to say that anyone who is a caregiver for a child with special needs HAS to plan for disaster.

Why?
Because everything at home rides on you. Benefits or services could be lost, CPS could be called, the child could struggle greatly with new and unplanned caregivers. School IEPs could suffer, a child can be injured with new caregivers- oh I can think of a million reasons why a mom of a child with special needs is irreplaceable.

I wish that someone had come right out and nailed me about this before surgery. I had surgery at the beginning of the school year. Knowing what I know now, I would never recommend surgery right before summer break. Unless you have one hell of an ESY program or summer camp option?

Have you ever seen the au pair program that pairs families with foreign therapists (such as OTs) for under $2000/mo? That might be an option for someone...
 
16 hout
Hon,look at what you said here. "Hopefully a couple weeks" is NOT nailed down. 16 hours a day is not 24 hours. In 5 minutes, well, people DIE in 5 minutes. See how many holes you have? Listen to me. Not only do you need NO HOLES, you need OVERLAPPING COVERAGE......not by minutes, but by HOURS.

YOU completely are OUT OF THE PICTURE for at LEAST 8 weeks. What would you do if you were totally absent, like transported to Antarctica? Make THAT happen. Not for a week or two. For at LEAST TWO MONTHS MINIMUM. Do this or cancel your surgery. Get it?


This is my reply: I don't know how I messed this up.

I think faster than I type at times. When I said I would hopefully have a couple weeks of recovery before school was out for the summer, WHAT I MEANT is that those first couple of weeks he would be in his normal routine and be gone to school while I was still pretty drugged and sleeping a lot more than likely.

The reason I said nurses 16 hours a day is DH would be home the other 8 hours of the day. I have spoken with my contact at the company that supplies my son's caregivers. She knows that the caregivers will come feed him and then play with him for 5 hours until his next feeding, then repeat until the next caregiver comes.

I planned on 30 minute overlap with the caregivers and DH, but if I need to have it be an hour I will do that.

DH doesn't let me lift him now if he is home and the caregivers do the lifting when they are here. Caregivers also give him his baths regularly, as it is very diffucult for me to even get do it now.

I will not be lifting him, or even holding him on my lap during those 8 weeks. I'm sorry if I made y'all think that I was planning on not following the doctors orders.
 
Oh, that's much better. But you will still need help. It may take you more than a few weeks to feel better too. Every once in a while, there's some unicorn that posts about feeling better right away. Ha. For some, it can take a few months. Please don't hate me. We are all on your side here. I do not want you to experience the special hell of how hard recovery can be for a caregiver. No one wants you to have to choose between your health or your child's, Kwim?
 
@ProteinSnob I do not feel ganged up on. I feel like y'all are pointing out things, that even in all the preparing that I am doing, there is still things that I didn't think about. It is definitely much easier to work these out now and plan then try and juggle it as it is happening. That is why I have talked to the neighbors and my niece is if something so I have them to fall back on if something would not go as planned. I also didn't mention that my daughter will be here the first 2 weeks after her college classes are out for summer. Since she doesn't "live" here the company will still also be sending caregivers out.

I am going to show my husband the au pair site and check into it.

I know allowing others to take care of him those 2 months of recovery are going to be worth the extra years I get with him. I am not going to risk internal injuries or complications or anything like that.
 
Oh, that's much better. But you will still need help. It may take you more than a few weeks to feel better too. Every once in a while, there's some unicorn that posts about feeling better right away. Ha. For some, it can take a few months. Please don't hate me. We are all on your side here. I do not want you to experience the special hell of how hard recovery can be for a caregiver. No one wants you to have to choose between your health or your child's, Kwim?

I understand we were just talking about a twit that went back to having in home daycare in her home a week after having the DS. No way in hell I would have left my kid with her. Then a week or 2 after that she was giving out advice to anyone that would listen.
 
I got a lot of things from your post, but the one thing I did NOT get was self pity....at all. You love your family and take your role as mom and caregiver to the bottom of your heart and you fear the unknown...the lack on control of the situations in the future.

So let me tell you what I know from experience. I have no for one second regretted my surgery...and you know I've been through hell and back, but never once have I even thought "I wish I didn't do this". So no matter what I have gone through, I still believe it has been worth every bit of misery. And once you are smaller after your DS and recovery, you will be on less meds and more vits....it will even out. :) AND you will be more able to care for your son and probably have energy to spare.

One thing I have found about protein is that experimenting is your FRIEND!!! I have discovered how to make orange julius.....and I love it....like LOVE IT! lol. You can mess around with the amounts of the ingredients to fit your serving size needs, but I mix whole milk, crushed ice, sf vanilla torani syrup, splenda and syntrax nextar fuzzy navel. I swear to all that is holy, the one I made yesterday tasted just like the orange julius you got in the malls in the late 80's. It was AMAZING!!!! To reduce carbs and increase fat, you could use half and half or double cream, but I didn't have that to hand. But omg...you have to try it! lol.

Also as a refreshing beverage, I find that I like syntrax nectar strawberry kiwi mixed with water and a dash or two or strawberry crystal light with loads of ice. It is good and refreshing but not as awesome as the orange julius lol.

You will be ok. It's going to suck, I ain't gunna lie to you. You are going to feel like a mac truck ran you over, reversed, had another go and then spunout on your belly. Fun times...right? But it won't last forever and if you just remember to take things moment by moment, you will be up and running before you realise it.

You are going to do awesome at this :)
 

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