help for siblings of our kids

[chrismclar]

Hi - we usually just talk about our special needs kids - our trach kids. but what can we do to help our other children deal with having a very fragile little brother or sister? My son Sean has been trached since last june and is still in his long-term care facility. (st. mary's hospital for children in bayside, ny) My older child, Juliette, is just 6 years old and in 1st grade. I can see that this has been so hard for her. we went through a bit of a tough time with her since she was a tiny preemie (1 lb 13 oz.) but she made it home after nearly 8 weeks in the nicu and that was it. This situation with our son is completely different. my son just turned a year old on april 13 and he has been hospitalized for almost he whole life!! that means that almost the whole last year my daughter has spent every weekend and most school holidays with us at the hospital visiting her brother. most six year olds don't spent every weekend at a hospital! Please ---what do you do for your other children? how do you help them deal with it?

[principe]

I don't have any other children but I have heard that siblings should be allow to do things their age. Maybe before going to the hospital you can take her somewhere she would want to go. That way she'll know her needs are being met also. Best wishes.

[jennymclelland]

I think the first step is being aware of the problem.

We have a two year old healthy one in addition to the one year old sick one. We stayed at McDonald House off and on for nine months. For the first few weeks, when we were in the thick of things and didn't know if James was going to live or die, I'm sure we neglected our older child. But once he got out of the woods, we were able to take a step back and think about how to stay as normal as possible while still having a sick baby.

We saw a lot of other families who were so wrapped up in the tragedy of their sick kid that they just ran out of emotional resources for their other kids. If one kid is sick for a short period of time, it will all come out in the wash. But we're not in that position. We're in this for the long haul, so we've got to find a way to redistribute the compassion in in the family.

We did this by taking A LOT of breaks from James while he was in the hospital, even if it meant just leaving the room to go play in the grass outside the hospital. James was 200 miles away for 9 months, so sometimes it seemed like our hearts were broken no matter where we were. We tried to go up every weekend, but the constant traveling was making us all crazy. It's just that two year olds respond to stress by being difficult screamers. Two year olds have the luxury of always being honest with their emotions.

Your older one is six, so she'll do a better job of explaining what she's feeling. But the feeling is the same - "Mom, I need love, I need attention, I love my sibling, but sometimes I need some me time."

On a practical note, spring for a really awesome toy that older sibling only gets to play with while at the hospital. Try to involve older sibling in parts of the baby's care - we let the two year old push the flush syringe for his feeds, and we keep a pile of HMEs in her reach. She spends half her day declaring "brother needs a new HME and then bringing him a new one." See if the older sibling can make friends with some older kids at the hospital - our toddler liked to play with the other toddlers at the skilled nursing home, because she got to be a "big kid." And there is no substitute for one-on-one time, with just mom and older kid or dad and older kid. The toddler makes a big deal of telling James - "We're going outside to play now, NO BABIES ALLOWED" You don't have to spend money on anything special, just time (which is in pretty short supply I know).

[Ainsley's Mom]

First I will tell you that I had a Kindergartener and preschooler when Ainsley was born. She was in the hospital for 2 months before coming home and then went on to have several surgeries that year. So I know a little about what you are going through.

One thing I did is set aside certain activities just for visits. So I bought these teddy bear water color paints and tablets that they only used while they were at the hospital. Maybe something as simple as a new sticker book or coloring book would help. My kids love surprises so any little thing would instantly make them happy.

They loved drawing pictures for Ainsley and were so excited to show them to her.

You could get a special book that you read to them both (something like Charlotte's Web) a bit each time you go. Or a new movie on occasion.

Basically anything to turn it into fun. Is his room cheery? Does he have a CD player? Music can help make a space feel happy.

I think if you have any family who could babysit for some of the visits it would be nice to break it up so she doesn't have to go to every visit. Maybe even sending her for a whole weekend? If you can afford it maybe a babysitter could be hired to do a fun activity while you are gone. Some of the children's hospitals have sib-shops for siblings. It might be nice for her to spend some time with other kids in the same situation. And that (depending on logistics) perhaps could be used as "childcare" during some of your visits to your son. I guess I'm saying I don't think the siblings need to go to every visit.

And lastly I think if you can schedule some one-on-one time just for her and make a big deal out of it that would help ease your feelings. Ask her what she'd really like to do. Sometimes kids have their own secret wishes they don't tell us about.

Try not to feel too bad about this. All you can really do is your best and make the most of it. Your daughter will be okay no matter what. I know it can feel bad when you think about how it is for the siblings but kids are resilient.

[kadiera]

We're in a slightly different situation, since the hospital is very familiar to Alexander, given the nearly identical histories of our two kids.

We bought a small stash of wind up toys - each day at the hospital, Alexander got a new one to add to his menagerie in the window sill. He and I went every day for 6 weeks (because it was too far to run to hospital #2 after dinner, like we did with hospital #1).

The doctors frequently seemed irritated by his presence, but most of the nurses loved it (especially once they heard his trach/vent history - here's a seemingly mostly typical kid who's been there and done that, running around their floor). We took breaks when he needed them, to walk the floors or visit the playrooms (child life was great in that respect). We packed up a bag of toys and left them there, so it was "new" stuff that he wasn't seeing at home. We did our own thing at home in the mornings, giving us plenty of one on one time, and then drove the hour+ out to the hospital after lunch.


Hospital #1 has been our home away from home - we figure that we've had one or the other child there nearly 1/3 of the days we've been parents (and about 6 days in two trips where it was both of them there at the same time). Everyone knows us in the NICU and PICU, and a fair number of nurses out on the regular floor have met us now that Alexander is "safe" out there without a trach. Our pediatrician does rounds there every day. We are very familiar with their play room, and we take ball pit type balls to play catch in their nice private rooms (PICU and regular floor, along with critical care in the NICU) and movies to watch on the TV and favorite snacks. There, people stop by to say hi, and nurses have been known to take Alexander for walks when things are quiet, so it's really not too bad.

[Cillian's Mom]

Hi, my daughter was 3 and my middle son 4, when Cillian was born. Since he spent most of his time in the CICU (7 months out of the first 12 months of his life) children under 13 weren't allowed to visit. On the weekends, some of the nursing supervisors would make "special exceptions" and allow younger siblings to visit as long as they had a medical clearance. The hospital was 1.5 hours away from our home so we didn't always take our other children with us and frequently my husband and i went to the hospital in shifts. One of us would stay home with our other 2 children while the other one went to the hospital with Cilly. This allowed our 2 children at home to have special time with each of us and also allowed Cillian one on one time with each of us. The one thing that it didn't allow time for was time for my husband and I to spend time together. We ran pretty much on empty for the first year, but it allowed us to keep everything as normal as possible for our other two children (although, i have a hard time defining "normal" - what is that anyway????) Sometimes when Cillian was in the hospital, my husband and i would both stay home to take the kids out to eat and then watch a movie together at home. Not often, but every once in a while, the kids needed to see us together to know everything was alright. Now that Cillian has been home for awhile, we continue to try to keep everything as normal as possible and allow the kids to go to friends birthday parties, take them shopping, to the mall, swimming, to the local amusement park, etc.... The one thing that we haven't tackled yet is a family vacation, all of us, together. That just seems so overwhelming to coordinate with all of Cillian's supplies that we have just avoided it altogether.

[Shauna]

I've always tried to make life as normal as possible for my DS, but haven't exactly succeeded. He was almost 3 when DD came home from the NICU so he doesn't remember much about what it was like before her...no nurses, no noisy equipment, not trudging off to countless appointments and therapies.

What I regret is focusing so much on her that I didn't notice he was having issues of his own. He's 7 now and is so incredibly quirky. He's been to a developmental pedi and seen a therapist for anxiety...but there's so much more (speech delay, stuttering, tics, food issues, toe-walking, etc). I'm taking him to the pedi today to get a referral to a PT or ortho for his toe-walking. I just got DD fitted for her first pair of AFO's and now it's going to be his turn! Well, likely anyway. I hate putting a label on him too, but I wonder if it might be necessary. I'm putting him in public school next year and I'm thinking with all his "stuff" he may need an IEP. Gah!

I'm thankful for our home nursing so I can focus on him a little more and keep up with all of HIS stuff too!

I don't think we "do" normal around here.

[IzzyB]

I have twins, one healthy and one not. We have always worked hard to make sure she gets what she needs. Like when the nurse comes at 7 we may take her out shopping or to a restaurant. We give her one on one time at home when a nurse is there. Now that Johnny is better we now are able to sometimes play with them together. Not well, but they do enjoy being around together. We take them to Disney and Sea World a lot and if Johnny can't do something we have one stay behind with him and we go with her. But now he pretty much can ride everything he can. As they get older it will happen again, because she will be able to ride some kiddie rides on her own that he won't. So again, we will make sure she gets that. We are taking her to swim lessons and as soon as she walks, we will enroll her in gymnastics. So she gets time with kids her own age. It is hard, but sometimes you have to walk away from your sick child and leave them in capable hands to do something age appropriate with your other child.

When Johnny is in the hospital we allow Abby to come in, but the nurses love her and play with her or we put her in his crib and she gets to play with special toys with her brother (she plays, he looks). So we try to make it fun for her and not just this thing she "has" to do. On days of surgery we leave her behind with a grandparents to have a fun "spoiled" day. We just somehow make it work, but it is always a challenge.

[franksdad]

Our children are older now, but when Frankie was little my daughter had a rough time. We allowed her to help with her brother. The zoo was by the hospital so we would take her and her other brother to the zoo, museums, etc. before and after hospital/ doctor trips. Frankie was never in the hospital long-term, but he was in and out constantly. He is now 13 and very seldom has hospital visits.