Monday, March 14, 2011

What is the Point of Respite?

Respite is a lifeline in the adoption parenting community. Often times it is the open door to reconcilliation when everything else has seemed to fail. The easiest way to define it is this-- a break. A time to take a deep breath.... and to think about everything... or not. For many, it is just that one breath so they don't drown in a sea of overwhelming behaviors and loss. And that is okay. Sometimes a Mom just needs a break.

I so appreciated what fellow Mom Shelley had to say about respite, that I wanted to share it here.

*This is a "touchy" subject in the adoption community....and people have a variety of viewpoints on the subject. Just a reminder that comments are moderated and if you can't say something nice, don't even waste your time here. *
For those of you not in the adoption community, respite care refers to a time where a family places their adopted child into another home for a period of time. Sometimes, this is very short term...a week or two, sometimes it's a little bit longer....a month or more, and sometimes, the respite care becomes more permanent. Just as there are many different "looks" to respite care, there are many, MANY different reasons that a family may need respite. Adoption is NOT always easy. Adopted children do NOT always adjust and "fit into the family" seamlessly. Adoptive parents don't always have all the answers, they don't always know how to cope or how to respond to a child's needs and it can be a VERY overwhelming feeling. Sometimes, the absolute best thing for the parents AND THE CHILD is a time of respite.

For 7 weeks in Jan and Feb, our family provided respite care for a child with Down syndrome. This little one is much younger than our crew and it was nice (and slightly unfamiliar!) to have a baby around the house again. Olivia and Zoie were in heaven....because our little visitor was a girl! She quickly had us all wrapped around her little finger. The biggest surprise of all though was Xander. He LOVED this little girl. He watched her like a hawk. He was very careful around her. When he was in his swing in one of his stimming episodes, she would crawl right in front of him and he would just STOP. He never acts aware of anyone else when he's stimming. It was quite interesting to watch. She would go crawling by him and he'd lean over and pat her on top of the head and then go right back to his stimming (usually spinning) as soon as she was out of the way. He did this time and time again and every time, I was shocked. I don't know why, but Xander was very "in tune" with this little girl. I did make the comment to Robert at least 20 times a day once or twice that if a baby girl could get Xander to "snap out" of the stimming like that, then maybe we needed a baby girl ;)

Anyway, the point of this post is to talk about asking for help. Many times, families who are having a hard time after completing an adoption are afraid to ask for help. They worry that people who were against the adoption from the start will say "I told you so". They worry that those who have adopted and not had any deep issues will brush them off or tell them to just deal with it. They read blogs of other families that have adopted and think that they must be doing something wrong since it's not that easy for them. They worry about the judgement that often comes from "well meaning" people who don't really have a clue what the family is going through.I've thought about this a lot....particularly in regards to families who knowingly adopt children with special needs. In many cases, these families especially feel like they can't reach out for help because they somehow "asked for it" when they volunteered to parent a child with special needs. I really don't know what the answer is. I'm just thinking out loud here. All I know is that there needs to be SOMETHING....some way that it can be communicated to parents that are struggling that IT IS OK if things aren't going perfectly and that IT IS OK to ask for help.....and that sometimes, IT IS OK to say "I need a break, a chance to regroup, a different set of eyes to give me a perspective on what's going on" or whatever the case may be.
You know what?
It's even OK to say,
"This is not what I expected and now I don't know what to do"Can I just say, right here...right now....
IT IS OK to feel these things and to say these things.
IT IS OK TO ASK FOR HELP. IT IS OK TO ADMIT THAT LIFE AFTER AN ADOPTION IS NOT ALWAYS A ROSE GARDEN.I know that there are groups out there for families who have adopted children with special needs. Reece's Rainbow has an "After the Rainbow" group for families that have adopted children that were "found" on RR. But, I hear from people that they are afraid to share, afraid to "be real", afraid to reach out.....and it all goes back to that ugly word JUDGEMENT. I don't know how to move past that. But, I know that the need is there.So, for me, this is yet another reason why I am struggling more to be REAL on this blog. I don't want to just share the roses....I want to share the thorns too. Truthfully, Kullen's adjustment, attachment and his behaviors since coming home have been HARD to deal with. I've shared some of that on the blog. It is an ongoing, every day thing that we deal with....STILL....after 10 months. Just today, I said, "Why do you insist on doing these things. You know by now that we won't tolerate it, yet you continue to push and push." Yep, I KNOW it's attachment related. YEP, I know we have 7 years of orphan life/institutionalization to deal with and that ain't all sunshine and roses. And YEP, in the grand scheme of things, it could be so much worse. But, that doesn't mean it's not hard. It doesn't mean it's not so very frustrating. Guess what else? After 2 other adoptions, I was not so pleasantly surprised at how HARD it was to bond with Kullen. It was just as hard for ME as it was for him. He's still not completely bonded to me. That too is hard for me to even say because I WANT him to be. I want it to be easy. I want it to be a rose garden. I want to just forget where he came from and what he's lived through and to have him just accept me and my love and our family and this life with no issues. I want the act he puts on in front of other people (like at therapy....man, I wish THAT kid was around all the time) to be the reality we see 100% of the time at home too. I am THRILLED at how far he's come and all that he's learning....and every single day, I wish and hope and pray that it's not the day that he takes the 3 steps back (ESPECIALLY with the poop stuff!!!).
LOVE IS AN ACTION VERB
Sometimes, it's a deliberate choiceinstead of a warm and fuzzy feeling.
I don't really know what the point of this post is.I just felt like it needed to be said thatNOPE, life after an adoption is not always rosesand families should not be afraid nor judgedfor saying that or asking for help.
It was an honor for us to be able to help this particular family during this time in their life. I am THANKFUL that they reached out for help. But talking with them and talking to other people about similar topics makes me realize that there is a responsibility in the blogging "world" that those of us who blog about "life after the adoption of a child with special needs" might be neglecting. That would be sharing the it ain't all roses side of things too. I understand that most bloggers share all the good stuff. After all, we want to share the VALUE of our children. We want to show off all that they CAN do. We want to sing their praises and brag on them and show the world that no, having a child with a disability is NOT the end of the world. I get that....and I like to do all those things too. But, somewhere in there, I think there needs to be balance. Now, I can't help but wonder if maybe, I have somehow failed in my overall purpose of writing on this blog. YES, our life is "normal". Nope, my kids have not "ruined my life" or in any way kept me from doing anything I want to do (well, except go to church, but that's a HUGE issue for another post!). YES, I love my boys with all my heart and YES, they are more than capable of learning and they are making huge strides in their development. But, it's NOT ALWAYS EASY.
Yet, I do know why people don't share more of the struggles on their blogs. It goes back to that same "J word"....JUDGEMENT. Other members of the special needs community are very critical of those who share their struggles openly. I've seen it. I've experienced it. If you share anything other than "my life is perfect with my child with special needs", then you open yourself up to huge criticism...and most of it's going to come from the very community that you'd think would support you.
As I said, I don't know what the point of this post is. It's mostly just to get these thoughts out of my head.
What is the answer?
How do we let people know that when they are struggling....whether it be after an adoption(which is primarily what I'm thinking about in this post) or just in every day life with their child......that it's OK to ask for help?
How do we.....those who blog about our lives with children with special needs (especially those who "chose" this life)......provide a BALANCE so that people reading our blogs don't think "There must be something wrong with me that I can't do this as well as _____."
Since I'm on a roll and just speaking my mind on these subjects, let me say this as well.....
If you hear that a family is getting respite care...don't judge. YOU DON'T KNOW what is going on.It's real easy, when you haven't walked a certain path, to sit back and criticize a family and to make them feel bad about asking for help. It is THAT kind of attitude and judgement that makes families hesitant to ask for help when they need it. Raising a child with special needs is NOT always easy. Raising a post-institutionalized child with special needs is even harder at times.
I certainly don't have all the answers. So, I'll shut up now and hope that all of you can follow my rambling thoughts.

14 comments:

  1. In the last few months since we started to do crisis placements (quasi respite, as all but one of them were respite situations) we've provided respite to 6 kids for shorter or longer terms. The sad thing is, many times the families saying they wanted respite were actually going straight to never getting the kids back into their home: the last two times we were contacted within a week asking if we wanted to adopt them. :( 4 of our respite kids never got to go home, one did, but after less than 2 weeks he was sent to respite again, his parents claiming that we messed him up during the weekend he spent with us. Sometimes it's hard to remain positive about respite. Oh well.

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  2. Needing a break is totally natural! I have friends whose bio son has very special needs that are exausting for the entire family. They have needed respite care more than once.

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  3. We have respite programs available to us. The waiting list is 2 yrs and a bit. Thankfully I have my workers to help with J. Respite as in over night respite..we don't use , last time I used a lady, it didn't go well and set J back quite a bit..so i say whatever works for you.
    I used to provide respite prior to becoming a foster parent.

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  4. I think the mom is speaking from her heart.... we all need breaks and it is not a bad thing at all. We can only handle what we can and we should not have to apologize for it.

    I think we need more blogs to learn what others go through to help ourselves. I know when I am at my lowest and feeling bad I read or hear about someone elses troubles and I am able to dust myself off and move on. I am not alone and life is not always greener on the other side.

    We need blogs like this... I post things but again I try to post it in a positive way... love to find her blog. mine is lifewboys@blogspot.com

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  5. Having 3 kids with disabilities wasn't easy for us. We had respite for a few years, then moved to a small rural town where we didn't get respite and where I didn't ask for it. Now looking back, how I wish I had. Maybe, just maybe we wouldn't have had the difficulties we went through with our son with DS. I highly recommend every parent who adopts be given the choice of respite. Some won't ever need it, however knowing that it's there could be a lifesaver for a family. Thanks for posting about this.

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  6. Hi Christine,
    I'm in Canada, so I don't know what folks have available to them in the US. But I do know that my family has provided respite for a fellow for the past 8 years! Our respite-fellow has mild developmental delays. He comes for the weekend, twice a month, on a regular schedule. There are occasions where either we, or his bio family, choose to reschedule or switch the weekends so that some special event can be accomodated, but for the most part, he always joins us for the 1st and the 3rd weekend of each month. I think if a system like this were available there it would help alleviate much of the stress many families are feeling with their kids. (adopted, or not!) It sounds like the problem might be that, out of fear of judgment, families are waiting until they have absolutely reached breaking point, where they can no longer cope. Then if they do finally get a week or two of help, they can't face the idea of having to cope with no end in visible sight again. Maybe if a system like my family is on, were available to more families, seeking respite wouldn't seem like such a stigma, and it could help keep more families in tact?

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  7. Newmom2-- what is your name?? :) Anyway her blog is
    www.only1mom.blogspot.com.

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  8. Terri-anne-- what a wonderful thing you are doing for this family. :)

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  9. We sent one son to Teen Missions for six weeks during the summer several times because we need a break from each other. It's just the constant vigil of keeping an eye on him & it was nice to have that time when I didn't have to do that and he could also be with a team of other kids. He's very social so this was a bonus for him. He's not going this year due to money so we'll see how that goes.

    My girls are going and while I don't need a break from them, they just want to go on a trip, I think it will be good for us to be apart and let them find out who they are apart from us.

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  10. Christine,

    I am Lisa Sattler.. or on FRUA as newmom2

    we are FB pals as well

    Lisa

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  11. Hi!I think respite is very much needed in the adoption community. I feel it is very nice when families are able to provide it,Sometimes a family just needs a break and some time to breathe a little.Or they may need time to get support services in place for the child and family to continue parenting the child.Or may need time to locate a new family and grieve .My heart goes out to all familes who are in this situation.I try never to judge any of these families .I have never walked in their shoes. If I can be of help to any family even just being a listening ear I have tried to do that.If I can be of help to other families please let me know. Blessings, Pat

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  12. I am really torn. You know I expressed some reservations to you recently about a respite situation - because in that particular situation, it sounded so much as though the child was scared, stressed, and very anxious to be with his adoptive parents, and fearful of being sent away.

    Sometimes with backgrounds of loss and abandonment, even not picking a child up on time can send him into a tailspin of panic and fear....so for a child like that, respite is abandonment.

    Think of how some toddlers react to having their parents simply behind a closed door - with terror.

    For a completely bonded child, who has difficult-to-manage physical or behavioral challenges, respite seems reasonable. For a difficult child who is in a temporary family - perhaps it doesn't matter.
    Sometimes the parent wants a break, but is the break always in the best interest of the child? And, what kind of break?

    Karyn Purvis recently sent out a newsletter suggesting "respite evenings" when children (all the children, not just the adopted or foster children) were picked up from school and taken to a friend's home for dinner, and not brought home until bedtime. Once a week - a sort of "date night" for parents, time to be alone, to talk, whatever. That seems splendid! Parents get a rest, but emotionally fragile children will never fear they are being "sent away" because they are (as deep in their hearts they fear) unloveable.

    Think of it this way - if a wife wanted a break and suggested a girl's night out - well, that seems reasonable. But, if the wife told her husband that she needed a break and she'd arranged a nice hotel room for him for the next three weeks - wouldn't he have reason to fear something was deeply wrong? If a grown man would be struck with fear and anxiety - surely that's what a child would feel.

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  13. How does a family find out about being available to do respite?

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  14. Thanks for the transparency.

    We brought our children home from Ghana 3 years ago. There were 3 other families IN OUR CHURCH that adopted the same year, from the same orphanage. We thought we would have an amazing support group.

    However ... the minute I started being "real" on my blog, we lost our friends. We were judged horribly when it became apparent that in order to protect our 5 younger children, that we needed to find a new home for our newly adopted teenage son.

    Our children have been home 3 years. It has been the loneliest 3 years of our family's life. We have lost ALL of our local friends ... our local support ... every. single. adoptive family in our community, turned their backs on us.

    Do I regret being honest on my blog? Not. One. Bit.

    I just can't fake it.

    I can't pretend to live a fairytale life.

    I love my children dearly, but I just have to be REAL about the challenges of older children adoption ... the challenges of RAD ... the horrors of sexual abuse between siblings ...

    Thanks for keeping it real.

    Laurel :)

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I find your comments so inspiring! Thanks for visiting our family blog, and sharing your thoughts.