Expectations for the Family Member with Special Needs

"When families have high expectations for their children who have special needs, everyone will benefit. As adults, typically-developing brothers and sisters will likely play important roles in the lives of their siblings who have disabilities. Parents can help siblings now by helping their children who have special needs acquire skills that will allow them to be as independent as possible as adults. To the extent possible, parents should have the same expectations for the child with special needs regarding chores and personal responsibility as they do for their typically-developing children. Not only will similar expectations foster independence, it will also minimize the resentment expressed by siblings when there are two sets of rules -- one for them, and another for their sibs who have special needs." From What Siblings Would Like Parents and Service Providers to Know by Don Meyer.

My husband and I have worked hard to have similar expectations for our boys.  We don't want Cooper to resent Bailey because he is getting special treatment.  When he either boy does not complete work at school they both know that they will have to complete the work at home as well as do their homework for that night.  If either boy has a problem at school they are discipline in the same manner.  Holding Bailey to the same expectation as Cooper helps Bailey develop independence and helps Cooper feel like he is being treated fairly.   

Expect Typical Behavior from Typically-Developing Siblings

"Although difficult for parents to watch, teasing, name-calling, arguing and other forms of conflict are common among most brothers and sisters -- even when one has special needs. While parents may be appalled at siblings' harshness toward one another, much of this conflict can be a beneficial part of normal social development. A child with Down syndrome who grows up with siblings with whom he sometimes fights will likely be better prepared to face life in the community as an adult than a child with Down syndrome who grows up as an only child. Regardless of how adaptive or developmentally appropriate it might be, typical sibling conflict is more likely to result in feelings of guilt when one sibling has special health or developmental needs. When conflict arises, the message sent to many brothers and sisters is, "Leave your sibling alone. You are bigger, you are stronger, you should know better. It is your job to compromise." Typically-developing siblings deserve a life where they, like other children, sometimes misbehave, get angry, and fight with their siblings."  From What Siblings Would Like Parents and Service Providers to Know by Don Meyers

Bailey and Cooper have a typical brothers relationship.  They fight and pick on either other but will be a united front if one gets in trouble with mom and dad.  Having to deal with his younger brother's annoying behaviors I think has helped Bailey in many ways.  He is tolerate of others, is learning how to advocate for himself and stand up for himself, and learning how to relate to people.

No matter how much we try to teach Cooper to be an advocate for Bailey and to protect Bailey when we are not around, Cooper does submit to peer pressure.  One day a couple years ago, my husband picked the boys up from daycare.  He found Cooper with a couple other boys laughing and making fun of Bailey.  This was extremely devastating to us but we used it as a teachable moment.  It really made us remember that Cooper is NT and is developmentally in a typical manner.  Making fun of Bailey is a typical thing to do but how we handle the situation helped Cooper learn that it is not a nice or respectful thing to do to Bailey.

What are some typical behaviors your NT child/ren has done? 

Sense of Humor

Below is a blog written by Cooper about Bailey's sense of humor.  Enjoy!

Bailey has a big sense humor.  He finds everything fun.  Bailey's laugh is loud and lasts a long time.  He likes to laugh at TV shows.  We laugh together at the shows.  I like Bailey's sense of humor.   

Expectations of Typical Developing Siblings

Families need to set high expectations for all their children. However, some typically-developing brothers and sisters react to their siblings' disability by setting unrealistically high expectations for themselves -- and some feel that they must somehow compensate for their siblings' special needs. Parents can help their typically-developing children by conveying clear expectations and unconditional support.  From What Siblings Would like Parents and Service Providers to Know by Don Meyers.

Anyone who knows Cooper knows he is the most laid back kid you know.  As a baby he was so easy going and continues to be that way as a seven years old child.  This easy going nature allows him to be flexible when dealing with Bailey.  If Bailey is having a tough day, Cooper does his best to exhibit his best behavior and finds ways to keep himself occupied while one of us is helping Bailey.  This has it's advantages and disadvantages.  A couple of advantages are he has a plethora of friends because of his easy going nature and he can go with me to meetings if I do not have a sitter for him.  People are amazed at how well behaved Cooper is at the meeting.   A disadvantage is Cooper doesn't really have any boundaries when it comes to other kids, especially those he can tell have special needs.  His kindergarten teacher worked with him to be more assertive about his personal space and to realize that he can set up boundaries with others.  This did help him be more assertive but we have to continue to work with him on this.

One thing we have always done with Cooper is to be sure to show him unconditional support.  Bailey receives so much of our encouragement and support that we have to stop sometimes and remind ourselves Cooper needs that as well because his accomplishments are just as important to him as Bailey's accomplishments are to Bailey.

My Brother's Journey

Below is a post written by Cooper.  Enjoy!

When I was two years old, Bailey had fits and screamed a lot.  It hurt my ears.  My mom helped Bailey not have fits.  Bailey's speech therapist helped Bailey ask questions and answer questions. 

It was difficult to play with Bailey.  He really liked the computer and I wanted to spend time with Bailey so I taught Bailey how to play Star Wars.  I ask him to play Star Wars and he will get off the computer to play with me. 

It was hard to talk with Bailey.  Now it is easier to play with Bailey and talk with him.  He doesn't have fits like he use to have and I am not scared like I use to be. 

Acknowledging Siblings' Concerns

"Like parents, brothers and sisters will experience a wide array of often ambivalent emotions regarding the impact of their siblings' special needs. These feelings should be both expected and acknowledged by parents and other family members and service providers. Because most siblings will have the longest-lasting relationship with the family member who has a disability, these concerns will change over time. Parents and providers would be wise to learn more about siblings' life-long and ever-changing concerns." (from What Siblings Would Like Parents and Service Providers to Know by Don Meyers)

Until I read this point from the article What Siblings Would Like Parents and Service Providers to Know I had never thought that Cooper had the same concerns that my husband and I have about Bailey.  After reading this point, I started to talk to Cooper about his concerns for Bailey.  Just like the article states, his concerns change as he gets older.  He use to worry about Bailey being happy or making friends.  Now he worries about Bailey being able to get a job and being able to keep the job.

One concern he has is does Bailey and him have a true brotherly connection.  This came to light one day when he was in the car with Bailey and Bailey's hab provider.  He asked Jonelle if Bailey would miss him if he died.  This upset Bailey terribly and he tried to explain to Cooper yes he would miss him. He even told Cooper he would cry.   This surprised Cooper because Bailey does not express his emotions very well.  I explained to Cooper that Bailey would definitely miss him if he died before Bailey but how Bailey displays his grief would be different than how Cooper would display grief.  That experience helped Cooper understand that Bailey may not relate to him like a NT brother would but he still loves and cares for Cooper.

Most of our talks with Cooper about his concerns happen naturally like the above situation.  When Cooper asks a questions or states a concern we do our best to discuss it with him.  We  want Cooper to feel comfortable to share his concerns about Bailey so he doesn't have anxiety about Bailey and Bailey's future. Also, we want Cooper to know it is okay to have concerns about Bailey just like we do.

Right to One's Own Life

Don Meyer is the expert when it comes to siblings of special needs children.  He has written many books on the topic, started an annual conference for siblings a couple years ago, and developed curriculum for a siblings support program called Sibshop.  One of his articles that I read over and over to make sure I am doing everything I can to meet Cooper's needs is " What Siblings Would Like Parents and Services Providers to Know".
http://www.siblingsupport.org/publications/what-siblings-would-like-parents-and-service-providers-to-know
Over the next few weeks, I will write about the individual themes and what I do to make sure I am addressing them for Cooper.  This week is the first one: The Right to One's Own Life.

The right to one's own life is something I had thought about long before I read this article.  I knew that Cooper needed to have as close as possible to a neuro-typical childhood as we could provide him.  This meant he would have to do activities that were not centered around Bailey but centered around him.  Making sure Cooper interacted with other neuro-typical children lead me to search for a mom's group when I stayed home with him during his preschool years.  Through my search I found an amazing group of moms that not only accepted Cooper but accepted Bailey even when he was having a rough day.  I am so glad that I found them because they helped me determine when Cooper was doing a developmentally appropriate thing or copying Bailey.  They gave me ideas on how to help Cooper develop in a typical manner and gave him opportunities to socially interact with his peers which gave him a break from the world of autism.

As Cooper gets older, his interests have changed.  Presently, I have him involved in soccer, karate, and swimming.  All of these sports are areas of interests of his as well as activities that don't involve autism.  I also have Cooper attend a different school than Bailey (I would prefer Bailey attend the same school but the autism classroom at that school is for severely autistic children).  At school, he is Cooper.  He is developing friendships that are based upon his interests.  Cooper's personality is developing independent of being  Bailey's caretaker, advocate, teacher, and therapist.    I think providing Cooper his own life allows him to experience a neuro-typical childhood as well as appreciate and love his brother for who he is, autism and all. 

Will She Accept Him??????

As a mother of an autistic child and a neuro-typical child, I think a lot about what they will be like as adults.  I wonder what kind of lives they will lead.  Will both of them lead productive and happy lives?  Will they both have a significant others in their lives?  Will Cooper's significant other accept and love Bailey like Cooper does?  These are just passing thoughts. Nothing that I really spend time thinking about for a long period time.  That was until a few weeks ago. 

Cooper is a very social child and has many friends so he receives many birthday party invitations.  We filter through them and determine which ones are important to him to attend.  A few weeks ago he attended his best friend Leah's birthday party.  It was at a movie theater/diner so I did not have a chance to meet Leah's mother until after the movie.  When we met one of the first things she jokingly said was "We are going to be in-laws someday."  I laughed outwardly but inside my breath was taken away.  The first thing that popped in my mind was will Leah accept Bailey?  Cooper is only 7 years old so something like that shouldn't be something I have to think about but unfortunately it is the reality of my situation.  Some day Cooper will be Bailey's legal guardian and whom he chooses to spend his life with will also be a caretaker of Bailey.  Whom he chooses to spend his life is so important.  It has to be someone that is understanding, caring, and is willing to advocate for Bailey just like Cooper.  Hopefully, my husband and I can teach Cooper how to find that person. 

Bailey's Cheerleaders

I signed Bailey up through our local parks and recreation for Special Olympics. He is presently doing track and field.  Today I decided to run/walk the track so I brought my foster son, Julian, and my son, Cooper with me.  After we ran the track, we sat in the stands to watch Bailey run.  Cooper and Julian yelled the whole time Bailey ran "GO BAILEY, GO BAILEY!!!" Cooper has always been Bailey's cheerleader.  He has always encouraged Bailey and celebrated Bailey's successes.  Now he is teaching a child who has never been around autistic people until he lived with us how to be a friend and supporter of Bailey.  It warms my heart to know that Bailey's cheer leading squad is getting bigger.  

What would happen if........

Despite the fact I work hard to  learn everything I can about the life of siblings of special needs children so I can avoid many mistakes that parents of these children do, I still mess up from time to time.  This became clear this past week.  Cooper asked Bailey's hab worker if Bailey would cry if he died.  This question upset Bailey terribly as well as Cooper.  Once I was able to calm Bailey down (he cried and said I cry which leads me to think he was trying to say I would cry), I talked with Cooper.  I have learned through researching life of siblings of special needs children that many of these children share the same concerns as their parents.  I have tried not to let Cooper know about my concerns in hopes he would not carry that burden but I think he does just because Bailey is his brother. He has known since he was a toddler that Bailey is different.  Now he is realizing that not only is Bailey different but Bailey's life will  be different than his life.  He worries about Bailey's future.  From my research on siblings of special needs children, this is very typical in these children.  Even though it is typical how is it fair that he has to think of such things.  This is one reason I am working with a non-profit organization in developing a local siblings support group.  If Cooper is going to care for his brother some day, I hope he has a strong support system in place.  This would include people that are in a similar situation.  People he can turn to when things get tough or celebrate with when things are going well. People that get it.   The work I do today I hope will help make a brighter future for both my boys.