Sibling support

[Ann]

Hi Shannon - Welcome! Â*I have a unique perspective (maybe not?) in that my first child was born deaf and, therefore, was a "special needs" child. She took all of our attention and energy. Â*Our second child comes along (Mary) and she is "fine". Â*Then I have Jack. Â*Can you imagine, Mary is not only a middle child, but she is sandwiched in between two special needs kids. Â*I have to say that she has handled it very well. Â*I think you have to take your cues from your child as to what type of intervention or support they might need. Â*One thing I have noticed is that Mary tends to be a bit of a hypochondriac - we guess because she associates being "sick" with getting attention. Â*However, overall, she is a very sensitive, well-adjusted kid. Â* Â*I often say that she undoubtedly will need psychotherapy when she is an adult, or, she can write one heck of a book! Â*The way I look at it is this - this is our life, sure it's not like everyone else's life and at times it really stinks. Â*But, she has learned early that life isn't fair. Â*I think Mary could benefit from a sibling support group, but I don't know of any. Â*Then there is Eric, my youngest, who has known no different and who is totally oblivious to Jack and all his stuff. Â*He is still young, so it will be interesting to see him develop in the mist of all the Jack chaos. Â*I also think having Eric was a very good thing for Mary, because he brings a balance to the family.

I'm sure in the end, our other kids can only be better people for having grown up in the families they have, but, I agree, their emotional well-being is a legitimate concern. Â*I don't have any answers yet. Â*Mary is only 11, I think if there is trouble to be had, it will appear in her teen years. Â*Give me strength!

Ann

[Triciasmom]

Shannon,

I have worked very hard over the years to keep the other kids lives as normal as possible. This has helped in keeping Patricia's life more "normal" as well. Kids like this will either make a family bloom, or they will kill it. ( I say the same for your marriage too). My oldest, now 10, is active in our community theater group and I have always found someone, some way to get her to rehersals. I have worked to make sure that appointments and surgeries to not keep me from seeing at least one performance. My son is only 6 and really doesn't remember life without Patricia being "sick". We have worked on compromises, helping them understand that there are some things that we can't do because Patricia can't. There are also things that we find ways to modify. And then there are things that we MAKE time for them to do even though Patricia can't.

Because Patricia is older, and was relatively healthy before all this trach stuff started, not only are we working to keep the siblings lives normal, but we don't want Patricia to become spoiled or self centered because of her illness. She is different, yes, but no more special that the others.

We keep everyone informed of what is going on with Patricia, and had them visit her during extended hospital stays. They have been giving "jobs" ...such as remembering to seek out mom or dad in times of need. In fact...Jacob at the age of 4 came for us one time when Patricia had accidentally decanned during play time (long story).

It is a balancing game, but one that you have to play. As I said earlier...this kind of stuff will either build your family, or kill it. It is your choice.

By the way....I also would encourage you to find time for yourself in all of this. Whether it is time to read, or time to get out to the store alone. You will need downtime to re-energize so that you are able to give all you can to your kids.

Godspeed

Clare

[bosslady_tx]

My little girl Kathlynn Age 8 has been an emotional wreck until this past year. Everytime Frank was sick she would go ito depression.We tried counseling which did not work, medications for deppression, nothing worked to keep her from crying. We would have to go get her from school because she would crawl under her desk and start bawling.

What ended up working best was to let her help with Franks care. She helps with trach changes, feeding, baths, etc.

Everyonce in awhile we still have a problem, but not as much as before.

[bdarling]

Quote[/b] ]But, she has learned early that life isn't fair. Â*[snippage] known no different and who is totally oblivious to Jack and all his stuff.

I can relate to that. Â*I hope the day does NOT come when I hear "you just had me to take care of Will". Â*That is my biggest fear - that I will not put enough effort into my daughter that she will resent her brother. Â* Since she is 4 years younger, Will's issues are all she knows about having a sibling.

She doesn't yet get embarassed by his stuff when we are in public. Â*In fact, she loves to sit on his lap in the wheelchair and get a ride when we go shopping. Â*Everyone stares at us, mostly smiling, but we like it!

One thing we try to do is make some special time for her, by having either Mom or Dad take her somewhere alone. Â*That is swimming lessons, playground, feeding ducks, and several outings to zoo, aquarium, etc. with some other neighbors and friends. Â* We have a nice pool, which is not going to be a big issue for Will http://www.tracheostomy.com/iB_html/non-cgi/emoticons/sad.gif Â*but she will get some more one-on-one time with one of us using the pool in the summer.

I also spend A LOT of money on a structured day care program for her. Â* I took her out of a home day care situation and into the expensive corporate type day care last September. Â*I think being around other kids in that way has helped her a lot. Â* Her verbal skills picked up a lot, and the teachers say she is smart (because she can figure out quickly how to manipulate, I think http://www.tracheostomy.com/iB_html/non-cgi/emoticons/smile.gif )

She does show some reaction to Will's hospitalizations. He was in the hospital for about 60 days in Oct/Nov/Dec when he finally got trach'd. SHe did fine visiting every day (practically) on the way home. SHe did OK for about a month after. Then she really started not napping at school and acting up. This was until about 3 weeks ago. We think it was a partly a late reaction to all the stuff Will has at home now, including lots of people coming in-and-out, and a new room downstairs instead of upstairs next to her.

Even with the awareness and efforts, she does have issues at night when my DH works late 3 nights a week. Â*Often getting in and out of bed for hours, because I can't stay with her to settle her in. Â*We are trying hard to get a routine, but she knows I have to check on her brother after a few minutes when I am putting her to bed. Â*Some of it is usualy two-year-old issues, some is manipulation because she knows I can't chase her around. Â* I have another thread going asking about video monitors, so I hope buying one helps that issue out!

[hcs_mom]

Our oldest is struggling too. Brianna was a 24-weeker and her stay in the NICU was a joy ride compared to Hannah. However, since Brianna was such a miracle as well, everyone spoiled her. She was THE focus of attention for nearly 6 years. And here comes Hannah, with her special needs, nurses, etc., and Brianna is just trying to see how she fits into all this. Unfortunately, a couple of times I have promised Bree a trip to the park, ice cream, etc., and something has happened with Hannah (like this recent illness after the Synagis) and I couldn't go. I know there is already some resentment, and I am trying to work with her. Brianna loves ehr sister dearly and Hannah adores her. Brianna can make Hannah smile and laugh by just walking into the room.

Anyway, we are including Brianna in Hannah's care as much as we can and make a point that we stick to her old routine (Mommy reads and story and puts her to bed). We just try to keep things as "normal" as possible.

[indiemum]

I really worried about this subject as Maisie had been the centre of our world for 3 years before Indie. She hs been stellar and an inspiration to us. We took Maisie out on "dates" and we included her in everything we did. We have never made a fuss over Indie, we just treat her like any kid. As far as therapy goes, we included Maisie in all therapy sessions and she loved it. We have now two wonderful daughters who adore each other and respect each other. The balance is so hard but if you make them all feel special, I truly think you can overcome any situation.

Kelly

[Barb]

It is very hard, but remember that kids are much more matter-of-fact about things than we adults are. I have learned a lot from their attitude!!
My other kids knew during my pregnancy that Bobby would have some problems (he now has more than we anticipated, but it was good preparation, at least). They are really pretty okay with the fact that he takes a lot of time. Of course, it probably helps that they are used to sharing attention since Bobby is the 4th kid.
I try hard not to ignore them, but they know the one rule is not to bug mommy and daddy when the suction machine is on!! I do try to work my nursing so that I can do special things with them and I try hard not to miss their events. But I have my mom in town AND she is a nurse, so she can watch Bobby as long as she isn't working.
My kids have made up their own prayer for Bobby and they say it at every meal and every dinner (it goes like this "Please help Bobby feel better, and not go back up to the hospital and please help Bobby sleep with us, Amen." Just fyi, it is big fun at our house on the weekend when all the kids can have a "sleepover" and sleep together on the floor in someone's bedroom). They are also really good at entertaining him, which is really no different than entertaining a "typical" baby -- they sing, show him stuffed animals, etc. In the long run, although it is hard for all concerned, I really think having a sibling will help a special needs kid and it will help the "typical" kid learn empathy for others.
-Barb