taking care of the "other kids"

I got to thinking, yes parents know they need to set aside time for all of their children and havinga child with a disability can sometimes make that difficult, but how do they do it and what exactly do they do?  I read an article and it says, :Adult siblings now are speaking out about what they needed and, in many cases, what they missed as kids. It’s not a question of love. Most report feeling loved by their parents and love for their sib. What it comes down to is a longing for information, protection, room to be a normal kid, and parental time and attention." 

http://psychcentral.com/lib/2006/taking-care-of-the-%E2%80%9Cother-kids%E2%80%9D-a-friendly-reminder-for-parents-of-disabled-and-non-disabled-kids/

This article was informational and it talks about how you nee to set aside fr the family as a whole, with each paretn and thn both parents, and with just child--parent or both child-parent.  With the day to day demands on life I cant even imagine how hard it is.  I know that I struggle somestimes with work and shcool and job junting and house work that I have to make myself make time for just my daughter and just my fiance as well as time for all of us as a family.  It makes you think and put things into perspectve.  Chldren remember everything and you want them to have the foundtion for a healthy relationship with spouses and with their children so that they are successful later on in their adult life.  AGAIN where is the parent guidebook?!?!?!

sibling's pressure to perform

I was thinking about a child who a diabled sibling and what do they go through emotionally, not just from their sibling, but how are they feeling? 

The sibling of a mentally challenged child may feel extra pressure on him, either to take care of his sibling or do the activities that his sibling cannot. Even if the parents are not putting the pressure on the child, he may feel like they are. The child may also feel lost or ignored, thinking that all of the attention is being directed at the mentally challenged sibling. Parents should be aware of signs that the child needs help or more one-on-one time, such as headaches and stomachaches, or if the child strives for perfection and has poor concentration or self-esteem.

K12 Special Needs Give Your Children The Education They Deserve--At Home--With K12! www.K12.com/Ohio

Read more: http://www.livestrong.com/article/82908-emotional-effects-having-mentally-challenged/#ixzz1w0uW1lIw


****GREAT ARTICLE-breaks feelings down into ages 3-17
http://www.permanente.net/homepage/kaiser/pdf/44897.pdf

What kids say
"I never get to do my things. I always have to be with my sister."

Sometimes I'm embarrassed when people stare at my brother in his wheelchair. But they don't know what fun he is."

"No-one knows my name. I’m always known as Sam’s sister. I feel like I’m invisible at times."

"My sister always wrecked my things – she didn’t mean to, but it upset me. Mum put a lock on my door so that she can’t get into my room."

"People look at me when I am signing to my sister and they think I am deaf too, so they shout. They get embarrassed when I tell them that I can hear them perfectly well, but I always say it in a nice way so that they don’t feel bad, unless they’re really mean people."

	"I sometimes get mad because my brother gets all the attention. I’d like some help sometimes too."
	"I feel really sad sometimes because I know my sister will never get better. Then I think that I’m lucky to have her even if it’s not for ever."

"My brother has hearing problems but he’s the best runner in the school and he’s on the footy team

This is completely off of my topic but when talking about siblings of the disabled and how it effects them, I thought about the divorce rate of those parents with special needs, and that would also effect the siblings. I always thought that the divorce rate was higher, but i read two articles and i found that it wasnt.  People sterotype and say that parents who have disabled children are at a higher risk, but infact they are not. 

“One of the first things couples can do is to make a decision to protect their marriage; they must understand that they are entitled to a decent marriage, no matter how many needs their children have,” said Dr. Marshak. “One of the steps involved with this is deciding that their relationship as a couple extends beyond parenting and that they need to devote at least a little bit of time to it.”
Dr. Marshak advises couples to devote just 20 minutes per day to each other, noting that 20 minutes is less than two percent of an entire day. “I think it’s helpful for couples to understand that protecting their marriage is actually good for their children. Often parents of kids with disabilities feel that they will be taking vital time away from their children. Some also feel guilt that they have caused the disorder; that’s another obstacle."

I thought that this insert was completely true.  When he mentions that some people fee guilty that they have caused the disorder, I would like to think that I wouldn't, but I can't say that I wouldn't either.  It would take a toll on marriage.  But with any marriage you must take time to yourselves and be a couple, not just parents.  Chilren need/should grow up in a family with happy parents. 

http://voices.yahoo.com/the-drawbacks-having-siblings-learning-disabilities-670798.html This website article talkes about the drawbacks of having a disabled sibling from a point of view.  It was interesting reading this article.  Everything I have seen has been mainly positive but this talks about the one sidedness to the disable sibling.  I thought it was intersting, althought I am skeptikal about the information because I have heard so many positive things instead of negative.

http://www.npr.org/2010/11/23/131548353/making-peace-with-changing-sibling-roles- Here is a good article that I read about an adult woman and her developmentally handicapped sister. She talks about growing up and growing apart and struggles that she faces with herself towards her sister.  I thought it was interesting. 

I just have to share this. Today I took my daughter and niece to TotterOtterVille.  While my niece's mother was in line for pizza my daughter and niece were walking tot he book area.  An older girl looked at my nieve and said "aww poor little guy" and Kendall yelled "SHES NOT A POOR LITTLE GUYS SHE"S BIG!"  it was the cutest thing and not five mintues later another little girl came up to us and said "what's wrong with you, why do you have those braces?"  I was waiting for my niece to say something but as soft spoken as she is, she didn.t so my daugther of course spoke up and said, "She has spina bifida but can still play soccer and cheerlead!  They just help her stay still (balanced)."  --i was so proud of my daugther for standing up for my niece and I would like to think that if they were siblings it would be exactly the same.  Along with this topic I wonder, My sister in law once said, when she first found out she was pregnant again, "I dont know how I would deal if I had a mentally handicapped child, I see how people treat Liv and you can see her disability, how would people treat someone when they are disabled but you cannot physically tell?"  It really got me thinking.  And children are often more aware of their surroundings, how often would a sibling stand up for the other?  Have I myself ever made a remark about a disabled child even though I could tell (like aspbergers or autisim). 

http://www.youtube.com/watch?v=lUZ2DVSt5Qk&feature=related -this is a good video explain a sib resource group

http://www.youtube.com/watch?v=f1kbfaCuit4- nice video where a sister explain her brothers autisim and what is hard for her and what she also enjoys. she says the hardest thing is to hear what the other kids say about her brother.

OK So throughout my blog I feel that I have look solely at siblings who live in the home with their disabled sibling and that are younger.  I have a close friend who has a disabled sibling and my friend is 26 and does not live with her sibling.  Her sister cannot live alone and my friend takes her many, many places, and her sister is a huge part of my friends life..here are some questions that I asked her and her answers. 

1.      What do you feel is the greatest reward of having a sibling with a disability?

Having a sibling with a disability has changed my life in many ways, in good ways and in sad ways.  And like anything it comes with its downfalls and rewards.  I would have to say though; at the end of the day the awesome rewards that Lori (my older sister) has brought to my life and my families lives is something we all cherish every day.  When I try to narrow it down to just one greatest reward I really cannot because after Lori had her cardiac arrest and anoxic brain injury my life changed forever in a positive way.  I am not going to say this journey has been an easy one but the small and big rewards definitely make it all worth it.  I guess I would have to say one of the greatest rewards is the fact that I get to make a difference in someone’s life every day. And by this I mean that Lori is always so appreciative of everything I do for her big and small.  I can make her day just by taking her to Wal-Mart or out to eat.  Not everybody can say they can truly make a difference in someone’s life everyday but with Lori I can and that is such an awesome feeling to have.  Also, another great reward is that Lori has taught me so much even though she was not intending to.  She has taught me to be thankful for the little things, to always cherish your family, and to never judge others by how they act. But instead to be understanding and embrace their differences because that is what I hope people would do for Lori as well.

2.      What is the biggest struggle you face family/socially?

The biggest struggle I believe that we as a family face is socially with Lori.   I say this because people are not always understanding or receptive to Lori’s behavior. I believe this is our biggest struggle because from appearance you would never know that Lori has a disability but once you interact with her then you are able to tell.  I feel like most people do not know how to react to Lori because she can come on a little strong and if you are not used to her then it can seem a bit overwhelming.  For that very reason, Lori does seem to struggle more in social situations especially when she is faced with a great amount of environmental stimulation.   I think this is a struggle for Lori also because she is trying to figure out where exactly she fits in, she knows that prior to her anoxic brain injury she was completely normal 17 year old, now 12 years later she has a hard time with little things like staying calm, communicating appropriately with people, and not having much short term memory.   As her sister, social situations are the biggest struggle for me to watch Lori in.  I see her trying so hard to fit in with everyone else, but as hard as she tries that is not usually possible.   To watch her struggle this much breaks my heart because I so much would love for her to have all the things most people have that they usually take advantage of.  But as much she struggles in social situations, she is always excited to go out with my friends and me, so I will continue to take her out into social situation because she truly does love to be “normal”(whatever that means). 

3.      Do you feel like you have a deeper/richer appreciation for your family and your life?

Prior to Lori’s disability my family was always a very close family, but after her anoxic brain injury I do believe that are family definitely became much much closer with each other.  My entire extended family has also shown support for Lori and has always been willing to help Lori and us in whatever way possible.  I truly believe that Lori is where she is today because of the courage and faith that we have shown over the years.   Working in health care I have seen many families fall apart when faced with having a child with a disability and I have seen many families like mine come together to only be a stronger unit. 

4.      What’s the most embarrassing/memorable/funny memory you have with your sibling?

The most memorable moment I have with Lori was when she was first waking out of her coma.  When she woke up we were unsure of how much anoxic brain injury she had actually suffered, so we were amazed to see that she was actually starting out at about an infant level again.  Being able to be by her side and getting to see her learn to walk and to talk again was truly something amazing to see.  I vividly remember all of us thinking how cute it was just to see her pucker her lips for a kiss, we thought this was so special and we were just so happy to see that she recognized all of us and remembered we loved her so much.   A funny/embarrassing moment would have to be when Lori was first discharged from the hospital she was convinced she was in the army.  One afternoon we were at the mall and after losing her in the mall, I was finally able to locate her at an army recruiting store saluting the officer there and telling him she used to be one them. The whole incident was so funny and was one of the many times where I learned there was no sense it getting embarrassed about that stuff but to just laugh it off cause there was nothing else I could do!

I have known these sisters for 3 years now and Lori has been around for most of those years.  I have come to love and adore Lori.  We take her many places with us and we just take care of her.  She can drink and dance like anyone else, but you just have to keep track of her.  What caused her seizure is a heart disease that many athletes end up dying sparatically from.  Lori's father, other sister, and nephew all have the disease, but her father only found out that he had it after Lori's accident.  I know how much Lori means to my friend and I also know that it is not always easy.  My friend's older brother who lives in Columbus doesn't help out much and neither does  Lori's other sister.  My friend and Lori's parents assume the responsibily for Lori.  At times Lori will remember that something happened and she will tell you that she won;t rememeber anything in a few mintues.  It is very sad but overall Lori is a very happy woman stuck in a 17 year olds body.  She is great with kids as well.  I thought this would help give insight of those who are older with disabled siblings.