recovery with children at your feet

[Leighanne]

As many of you know that have read my other posts I have a son, almost 5, who is autistic and has epilepsy. He is not verbal, has not sense of danger (he would walk out in front of a car, into a pond, jump off the balcony, play with knives etc) and I cannot let him out of my sight. He does not even climb into his car seat on his own. If I dont hold his hand at all times, when outside, he would run off and keep running, no, stop, dont do that, mean nothing despite years of behavior modification. He weighs 45 pounds and is stronger than I am.

So what I am asking is for suggestions, input, whatever you got, on how to do this. Did I mention I am 1400 miles from my family and my mother in law will only be here for 2 weeks (most of which I guess I will be in hospital) Other family members could help but they dont know my son well, how to deal with seizures, and to be honest, without detail, most could not truely help.

I am having TV ring, PVR with bovine tissue, full MAZE and procedure to decrease size of pulmonary artery and expected hospital stay is 2 weeks. What can I expect as far as ability physically to deal with this situation? I have some in home support but not to get my son ready for school in the a.m, getting him home and for the aprox 3 hours in the afternoon when I would not have help. My husband can take time off, but this is a unique situation so can he use all his family leave? He cant afford leave without pay and only have a couple weeks of sick leave. I just dont know how I will do it, and dont know who to ask, I am so tired from the PV issue and A fib that I dont have time nor the energy to figure it out. I think I am in the minority, dont know any other parents or CHD folks who share both these problems.

Part of this is to vent and part is to get input, so thanks
Leighanne
Surgery date May 11th, Childrens Hospital Boston, Surgeon; Dr.Pedro del Nido,

 

[Nancy]

Hi Leighanne-

It sounds as if you are going to have to get some input from the community services groups. Maybe you could start with your local hospital and their social services coordinator who might have some ideas of what is available for you in your community. I don't think anyone in the Internet would know what would be available in your particular community unless they lived where you are.

You are going to have to get some help with your son's physical care. You will have lifting restrictions (10 pounds or less, some doctors say 5 pounds) for 6-8 weeks after surgery. You will also have driving restrictions for the same amount of time. Maybe your family could help in a sort of relay form, when one's leave time ends the other could come along and help.

But my guess is that you would feel most comfortable with help in the form of trained personnel who understand the nature of your son's difficulties.

You have a tough, tough thing to deal with here, and I feel for you. There must be some type of good care available for your son. It's going to take some investigation.

 

[Creed3]

Nancy is right. You may need to check out some community services. The tag team approach works very well too. When I had my surgery, my kids were 7 months and 3 years. My husband took off about 2 weeks. One week was while I was in the hospital and one week at home with me. My mom also came to help out. She stayed for 2 to three weeks and then my inlaws came and stayed to help out for about another 3 weeks. That covered pretty much the critical recovery time. I hope you are able to work things out.

Take Care!
Gail

 

[Leighanne]

care of son

care of son

There are resources available but the only resource that I would trust for in home care iis not helping, tried to contact, get the ball rolling but no luck. i have some in home support now, and money for about16 hours a month to pay them but after that it is $10/hr out of my pocket. I have not been working so no disability or other money help for me. My son is such a hard kid to know and understand that there are not many that could deal with this. I have been to exhausted to deal with fighting for the help and have tried to get my husband to pitch in on finding the resources, no luck there. I dont even know how my son will get home from school, there is a resource there but not one that is reliable or able to deal with my particular child. My mother in law does not drive. I am about ready to just say forget it and let my family figure it out. I will show up for surgery and they can take care of the rest. I did not think anyone would have actual resources info, just need to vent and hope to get a few ideas.
Thanks
Leighanne

 

[xtremlee]

If you goto church I would turn to them. They have been great in helping me out. They brought food for 4 days after my first surgery and have brought food for 4 days after second surgery today is my last day for that. It has been a great help to our family not to have to worry about what we are going to do tonight for supper. It also gives us time to wind down from all the stress of the hospital.

 

[ar bee]

I dont want to sound rude, but the only thing you can to do is "OUTSOURCING". No way you can pull this off on your own, your son and you would be in much too much danger.
Is there any thing like temp day-care where your son could stay for app 2 month until you are fully back??

well2u
ar bee

 

[Leighanne]

my son is in school from 9-2 each day. The time I worry about is before and after school. The other problem is family leave, lots has been used up this year already because of my son. Dont think we can afford to use the time without pay, without some other financial assistance. My sons case manager is useless, and my dad who would be of great help if he came out here cant leave my mom and cant help me with her here as she has alzheimers. Because of so many issues with my son it is not possible to get just anyone who can "sit" with him, if it were that easy, I would not be so worried if that were the case. I guess I am hoping if I whine enough someone will hear where I am and come to the rescue, let me know they will take care of it all. I guess that should be my spouses job? I am just so tired already. Boy I am a downer huh, well, nobody else to gripe to I guess. Dont get me wrong, I do have this inner voice telling me it will all work out,I will be fine, a better wife and mother and person, that this is for the best, that I was led to live here in the Northeast, not for my son as I thought, but for my future needs which I did not forsee. But sometimes, like 10 days from surgery it seems too much.

Thanks for advice
Leighanne
What do/have most had for lifting instructions, how much of the day have you needed to rest/sleep after being home, especially those that have also had MAZE??

 

[Karlynn]

Leighanne,
Can someone in your family fly in after your mother-in-law leaves? Can your mother-in-law stay longer. Do your son's teachers have any suggestions? Is there a classroom aid that might be willing to help you out?

 

[Leighanne]

help with my son

help with my son

My sister may be able to fly in after my mother in law leaves. I feel guilty asking even though she kind of offered, (do i buy her a plane ticket, what is the etiquette, we chose to leave) The teachers at my sons school are the ones i pay after school hours to work with my son in our home, they are wonderful, but the way things are set up there is no real in home support, just a little money for respite but good people willing to work. Just have to make sure there is enough money to pay for what is beyond respite. The irony to all this is that I am probably alive and will stay alive and WELL because i moved up here to place my son in this school that the state pays for. After years of on and off symptoms it was finally a doc/pedi cardiologist who listened to me (i never complained, just was concerned). And of course many of the best congenital specialists and surgeons are 2 hours away in Boston. I know there was a plan, thought it was for my son, guess in a way it was as much for me. I could have thrown a clot at any time while alone with my son and thanks to my docs up here, I am still here.
Leighanne

 

[tobagotwo]

To guess at what your situation is like from afar is impossible. It is obviously deleterious to your condition and would be general hell for a healthy person.

However, you must make peace with the fact that, when you come home from the hospital you can NOT deal with your son alone, even for a short period of time. You will NOT be able to help get him ready for school, get him home (you can't even drive for over a month!), and absolutely will not be physically capable of dealing with him after school. If you were to attempt it, by your description, he would be endangered. You are much too smart and too good a mother to allow that.

It is not a "force of will" option. You can't make it work by trying to batter yourself through it. You will be literally held together with wires, and won't even be able to take in a full breath, cough, or sneeze without holding yourself together with your own arms. You will be unable to even lift his school books, much less physically deal with him.

Here are some general thoughts, although you've likely already run through most of them:

- Remember that those who don't want to do something are frequently willing to give out the names of people who might do it in their place. Put pressure on those who don't seem helpful, let them be concerned that they might somehow wind up responsible to do something themselves.

- Look at any other resource, and see what is holding it back. Look at options to release the resource. For example, see if someone can help with your mother, to free up your father.

- Be brutally frank with someone (such as a family member) about the situation and what is actually needed, and see if s/he will rise to the challenge. Someone may surprise you.

- Go over your case manager's head. Fast and hard.

- Try the hospital. See if there are resources in one of their community outreach programs. Or see if they can apply leverage to one of your other reluctant resources.

- Get the resource in the school to provide the names of other resources. Contact some of the resources who can't or won't help you, to see if they can finger other resources who might take part of your situation on.

- See what temporary help you can get now, so you can try to arrange resources. The need starts now, not just after surgery. You need to have some time and energy to work to get resources, and some even just to think.

- Something Has To Give. That has to be your new motto.

- If all else fails, point out to your husband that, if you can't get these resources before you have surgery, it will all fall to him. Have your cardio explain to him that you pitching in, even part time, after surgery is a physical impossibility. Better he helps now than he inherits it all.


Realize that, even if you do nothing about it, this will somehow sort out, as it has no choice. When the reservoir is full, the water flows over the dam. Anything you can accomplish will be a plus. So often there are no ready, good answers in life. This will be difficult, but it will work out for you. Meanwhile, keep hollering.

 

[danielgilboa]

Hi Leighanne,

We have a mentaly disabled boy and I am 2.5 weeks post mitral valve replacement. Yes, we are in the same boat. I hope knowing you are not alone gives you some degree of support. I can share our experience with you although I do not know how much of it you can use.

OUr disabled kid is now 19, but his behavuor and capabilities seems not much different than your 5 year old. He goes to school in the morning and then to a special home where he has lots of fun antil he return home at about 7pm. They have sleeping facilities at the home. We asked them to have him sleep over 3 nights of my first week. He has an older brother who took command of the "home affairs". My wife was free to be with me whenever I (or she) needed it. It does not sound like you have a similar setup where you live. I would like to share some of my short experience with you-

During the first 2-3 weeks after surgery you will not be able to take care of your son. You will not be able to be responcible for his wellfair. Even when you get home, you will not be able to jump up to him as I am sure you need to regularly. For the first 2-3 weeks you can not be responcible for him. You must hand over the responcibility to some else. I noticed you are very concerned he is treated at the best (which only you can do) but you will need to compromize now for the sake of the two of you. At this time you need to let go and concentrate on your own recovery. It sounds selfish but that is what you will need. WHen this is over he will have a stronger mother so it is for him too.

I think you need to turn to your family and society and ask for assistance. You will need to turn over the responsibility to someone else. I am sure you will find good people in your family or society who will be wiling to take up the challenge. After all, you treat your son for life, you need a volunteer for only 2 weeks...

Daniel

 

[Granbonny]

Hi Leighanne

Hi Leighanne

I'm going to go the other way. Is there someone you could stay with ..when you come home from surgery? Like a friend? And let your husband and his mother take care of the little one?....If your hubby could take him to school..and let him stay..until he gets off work?....You will really need the rest..After, 2 weeks, at staying at a friend's house..you should feel a little better..but still not strong enough to take care of him for another month. I hope your sister could come then..Gosh, I am finally out of words to say what to do...Even, having to find a place for him outside of the home for a month......Safe place........Will be thinking of you. Bonnie

 

[Mary]

Leighanne,
Does your son go to school year round? I hope you're not about to break for summer vacation.
I think you need to accept that this process is running its own course, and you will have to go with it. Once you have surgery, your husband will be forced to acknowledge the reality of your physical limitations. Hopefully, he will see he must take action and find sources to help your son while you are recovering.
I know it must drive you crazy to think that you are temporarily leaving your son in such an uncertain situation, but this will soon be out of your hands. You are powerless in this situation. It's time to let go and trust that someone else can carry your load for awhile.
The suggestion that perhaps your father could find care for your mother is an excellent one. You mention the airfare for your sister. Perhaps you could ask your family (father and mother) to chip in on the price of the ticket.
I know it must seem like you're facing an eternity of disruption, but its not. Time will pass, and you and your son will ride out the storm.
I will pray for you and your family through all of this. Many others will be doing the same. Our faith is the deciding factor in overcoming even the most difficult situation.
Mary

 

[Kathy]

Dear Leighanne,

I teach Orthopedically Handicapped children and I know where you are coming from. Your son will need special care and an inexperienced indivdual would be incapable of handling your child. You MUST find some help for your child.

I have been in many situations where I have acted as an advocate for one of my students. The Children's Services says to call the Health Board, the Health Board says to call the school, the school refers you to Children's Services. One feels like Alice in Wonderland.

I am only aware of social services offered in my state. Each county has a Board of Mental Retardation (at least that is what it used to be called). They provide social services, including 24 hour respite care. I know that two years ago they offered 6 weeks per calendar year. I'm assuming that you must have a similar situation and that is where your caseworker is working.

I would call a hospital social worker if your child has been treated at a local children's hospital, or one which has a pediatric ward. Usually one social worker handles pediatric cases. They seem to have a better knowledge of resources and are the best at cutting through red tape. Next, I would call the MR Board if that is where the case worker is, and go over his/her head and talk to the supervisor. Finally, I would contact the local public school system and ask to talk to the school social worker.

If there is a university that offers special education degrees nearby, you could contact the university placement service and possibly find an experienced person. Many of my student teachers have worked with the handicapped in respite or school settings during college.

You say that you are reluctant to take your sister up on her offer to help. Would you help her if the tables were turned? I bet she is very willing to help out.

I'm hoping that you will find some answers soon.

 

[Karlynn]

Leighanne,
I think the first 2 to 3 weeks you are home a crucial that you have care for your son that doesn't require you to be physically available for his needs. It's very important that you allow yourself that time to recuperate.

I used to teach multiply disabled students and often helped parents find after school home care, so I would hope that your son's teachers can direct you on this. You also should let your husband know, in no uncertain terms, that the less you have to do for the first month of your recovery, the quicker HIS life will get back to normal.

I think Granbonny's idea is a pretty good one, after reflecting on it. If you are in someone else's home, you won't be tempted to push yourself to do what you really shouldn't be doing in the first place.

I'd take your sister up on her offer to come help. If she can't afford the ticket, or you can't, ask for some help on that from other family.