[Hola]

Has anyone dealt with surgery, having to stay in the hospital and the hospital allowing your special needs child to stay with you during your hospital stay? I am faced with a panic attack over this and the hospital hasnt' called me back yet to answer this question. What have you done with your special needs child/children if you needed surgery and a hospital stay???

[Hola]

I called back and they said "no." This is frustrating to say the least.

[kicker]

You are your child's best advocate. They say no but you don't agree. Try to get your way by not accepting their answer. As I was once told "put on your nasty pants" Try to get what you know is right. Good luck. Hang tough. No, this is not easy. You shouldn't get nasty, just stubborn in the nicest way possible. There might be (nurses, etc.) who agree with you, not the administration. They'll give you no cot to sleep perhaps, but if your in a chair, who would throw a mom out of her child's room? Stupid rules are made to be broken. Good luck.

[Lara]

You're in a very difficult situation by the sound of it. You're the one having the surgery though, aren't you?

Just another perspective though... I would think their decision might depend on the exact type of surgery you're having and your expected recovery time. Maybe the hospital is concerned about your own recovery. I have not been in the same situation exactly, but just reading the messages here, that's my first thought about their decision.

If it's a minor proceedure and you'd be up and about without risk then I'd pressure them, but as I said, I really think it would depend on the type of surgery you're having.

I take it you don't have family or someone else at home who can care for your child while this hospital stay takes place?

I don't know what we're supposed to do sometimes. Many years ago I put off having something really important done in hospital (but it wasn't surgical) because I was a single parent and had a child with special needs who couldn't be left alone and another child as well and in a situation where nobody could come stay at my place and run the situation etc..

I even had some difficulty being allowed to stay with my own child when he was having hospital proceedures and he needed me there. I have in the past often been totally aghast at the response to me (and others) from hospital staff about leaving a child alone with a bunch of strangers and totally scary experiences, proceedures and conditions.

[mpalmer118]

That is a hard one, because from the hospital's stand point it is a liability issue. Will you be physically able to care for you child after the surgery? Are you in the US? I am assuming there is no other family that can care for your SN child? Do you have respite care available even if you don't usually use it?

Sorry I am asking so many questioning, I am trying to brainstorm......

[Vowel Lady]

Call the hospital and see if they have a social worker. He or she should know of resources in the community or if arrangements at the hospital are possible. One thing that crossed my mind is that if an off duty nurse were to watch your child, this might help with liability issues.

What I have always done in these types of situations, is hire someone to help me.

Sometimes, it is a friend of a friend who was willing to do it for a very reasonable fee...for example a very responsible stay at home mother who didn't have to leave the house daily and was willing to stay home with my child. To even consider such a thing, you would have to carefully check the caretaker (including references) and make sure they were capable of coping with the care of a special needs child.

If it all worked out, I made sure the caretaker was aware of all my child's needs...meds, etc. I reviewed many different potential emergency scenarios. Additionally, I would have other friends of mine call regularly and be willing to step in to provide the caretaker with any needed support. Honestly, it was a well thought out...carefully checked and planned process. Never, easy by any stretch of the imagination.

My heart goes out to you....I hope the situation resolves and that you feel better soon.

[brennan1968]

my heart goes out to you. now i'm getting nervous wondering what i would do with my son if i needed surgery. more communities need to come together and help people. good luck if you were in NY i'd help..

[judymoody]

How old is your child, and does he/she receive any special services or have an IEP or IFSP? Your service delivery provider might be able to give you some leads for respite care. You should be able to ask the hospital- I'd contact a social worker, or someone in the pediatric area to help you locate a qualified respite worker that will come into your home and is qualified to meet the needs your child possesses.