CBs

As mentioned in another post, Cooper, like most siblings of autistic children, worry about their siblings future.   Ever since he was little, he has worried about what kind of job Bailey would have as an adult.  Like all siblings of special needs people, Cooper would like Bailey to have a meaningful life as an adult.  He would like Bailey to have a job he enjoys and friends he can socialize with. 

One day during in-home speech therapy, Bailey told his speech therapist that he would like to be a "cooker", aka chef.  This got Cooper thinking.  He decided that when Bailey and he are adults, they would own a restaurant called CBs.  This would be a place where Bailey could do what he likes to do, cook, as well as have a job that brought joy and meaning to his life.  It would allow Bailey to socialize with people in a safe environment. 

Cooper has realized at a young age what many researchers and members of the Siblings Leadership Network have discovered.  When the special needs person in a family has something to do during the day whether it is a job or volunteer work, it provides less stress and brings joy to the rest of the family. Cooper's insightfulness  and wisdom beyond his years continue and will continue to amaze me on a daily basis.

Twelve Important Needs of Siblings and Tips to Address These Needs

I am always on the search for great articles about siblings of autistic children.  Recently I found an article that has a concise summary of Sandra Harris's book Siblings of children with autism: A guide for families.  This article includes many helpful tips in meeting the needs and concerns of your neuro-typical child/ren.  Enjoy!

http://www.autismsupportnetwork.com/news/siblings-perspectives-some-guidelines-parents-332881

Benefits

Having a sibling on the  spectrum does have a few benefits.  Cooper has grown up thinking that the lines at Disneyland are always five minutes long.  He gets discounted tickets to local sports events when they have autism awareness nights and he gets to attend cool events like horseback riding for free.

Recently Cooper reaped another benefit of having an autistic sibling.  During our spring break we went bowling with a local autism group. Cooper was not thrilled to go because being around autism is exhausting and he is not the best bowler.  When we arrived at the bowling alley we saw that they had the bumpers up for the kids.  Now for most autistic kids they need the help of the bumpers but Bailey can easily bowl between 70-80 without the bumpers.  Cooper unfortunately does not have the same gross motor skills as his brother. If there had not been bumpers up Cooper would have not hit one pin.  He left the event so proud of himself for having such high scores and even beating Bailey one time.

Could Cooper have that experience if Bailey was not autistic?  Probably not because the bumpers would not be available to him.  Thanks to having Bailey as his brother, Cooper had an amazing experience bowling that he will never forget.

Opportunities to Meet Peers

"For most parents, the thought of "going it alone", raising a child with special needs without the benefit of knowing another parent in a similar situation would be unthinkable. Yet, this routinely happens to brothers and sisters. Sibshops, listservs such as SibNet and SibKits, and similar efforts offer siblings the common-sense support and validation that parents get from Parent-to-Parent programs and similar programs. Brothers and sisters -- like parents -- like to know that they are not alone with their unique joys and concerns." from Don Meyer's article What Siblings Would Like Parents and Service Providers to Know.

When Cooper was two and half years old I had to quite my teaching job so I could stay home and coordinate Bailey's school and therapy.  We had moved to another state so there was a mountain of paperwork I had to fill out as well as a new system to navigate.  Once the dust settled, I realized that I needed to get Cooper out and about so he could meet kids his age.  Through an internet search I found this amazing group of moms.  Through this group of women, Cooper and I were able to make friends that not only accepted us into their group but Bailey as well.  Both boys were able to make friends but the biggest thing was Cooper was able to spend time almost everyday with other neuro-typical kids.  He learned from the other kids appropriate behaviors for his age, how to play with others, how to share, and many other typical things kids his age did.

After a year and half in that state we moved to the state we presently live in.  I went back to work and Cooper went to all day preschool. On a daily basis he was interacting with his typical peers which prepared him for elementary school.  Cooper is a very social boy that is friends with everyone.  Once he entered elementary school this was very evident.  He received many birthday party invitations which we made sure one of us would take him and only him so he could be a typical kid at his friend's birthday party.

At age seven years old, Cooper is involved in soccer and karate which he enjoys doing.  We love having Cooper participate in these activities because he gets the opportunity to be a typical kid.  When he is with his typical peers, he is easy going and happy go-lucky, all things we love to see him be.  

Right to a Safe Environment

"Some siblings live with brothers and sisters who have challenging behaviors. Other siblings assume responsibilities for themselves and their siblings that go beyond their age level and place all parties in vulnerable situations. Siblings deserve to have their own personal safety given as much importance as the family member who has special needs." from Don Meyer's article What Siblings Would Like Parents and Service Providers to Know.

This is an extremely important thing to both my husband and me.   We have never wanted Cooper to feel unsafe in his home so we have worked hard with Bailey to teach him to not physical assault others, specific Cooper. When Bailey was younger we had to restrain him so he would not hurt Cooper but that changed as he got older.  Though positive reinforcement we were able  to teach Bailey how to express his anger and how to treat Cooper.   Bailey will still scream and yell which Cooper can not stand but Cooper does feel safe in his own home.This has helped the boys to develop a sibling relationship that may not have been there if Bailey was physically aggressive towards Cooper.

Life Gets in the Way

It has been awhile since I blogged.  Life definitely got in the way.  Between work, the boys, and two foster kids, finding time to blog was hard.  We are now transitioning the foster kids to their family.  We had these kids for a year and half.  As we transition the kids back to their family, it makes me appreciate the time I have with both my boys.  They are both well behaved and quiet which is so nice to have after the chaotic life  we have had the last year and half.

I have a lot of catching up to do to finish my blogs on Don Meyer's article called What Siblings Would Like Parents and Service Providers to Know.  I hope you have find them helpful and interesting.

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.

Baseball Game

My husband is a big Diamondbacks fan. He was thrilled to have sons to take to games. When each boy was a toddler he started to take them to spring training games and regular season games.
Today he decided to take the family to a Diamondbacks' game. Cooper absolutely loves everything about the game. He enjoys seeing the players up close, he enjoys cheering for the Diamondbacks, and he enjoys stuffing his face with popcorn. I think the other thing he enjoys is his brother's unusually behavior fits right in with the crowd. Bailey loves to join in with the cheering and the clapping. When Bailey makes an unusual noise no one notices because there is all kinds of noises being made during the game. Cooper also gets to interact with Bailey in an appropriate manner. Bailey looks to Cooper to show him what to do during the game and Cooper encourages Bailey when he participates with the crowd. The ball park seems to be the one place Cooper can have a relatively typical brother relationship with Bailey.

Copy Autistic Brother

This post was written a few months ago but continues to be true to this day.


No matter how hard I try to socialize Cooper with typical children, he still copies a couple of Bailey's behaviors. He will make noises back and forth with Bailey. His temper tantrums are very similar to Bailey's except he has more language to use while he is in the middle of it. I wonder how much I should worry about Cooper and how much he will just stop doing as he gets older and is in school. Please share your thoughts and experience in this area of raising a typical child with a special needs sibling.

Typical is not always what you think it will be.

This is a blog I wrote the night before Cooper started Kindergarten.  He has come such a long way.   He absolutely loves his school, teacher, and friends. 

This week I learned that just because I have a neuro-typical child doesn't mean I will always have my fantasy typical child experience.
Cooper will be starting kindergarten in a few weeks. I have been looking forward to this for a couple years for a couple reasons. One I taught kindergarten and two my oldest is autistic so I didn't have the "typical" first day of kindergarten experience.
When I received Cooper's teacher assignment and supply list in the mail I was so excited. I told him that we would go shopping for his school supplies and I would let him pick out his own school supplies. I discuss with him which of his friends will be at the same school as he will be next year and when we would meet his new teacher. As we discuss this, he starts to cry and run away from me. Once I could get him calm down, he tells me he doesn't want to go to a new school. He wants to stay home. This is not what I dreamed would happen. In my mind, Cooper would be excited to meet his teacher and a make new students. Instead I have a very upset little boy. I guess like most things in my life, I have to think outside of the box in order to make this experience the best it can be.

Friends

All parents want their children to chose friends that they approve of and want in their children’s lives.  As a parent of a SN child and neuro-typical child this is true for me.  I want Cooper to chose friends that are nice children but also are accepting of Cooper’s autistic brother. 

Cooper is a friendly and an outgoing child.  His peers really like him so he has many friends.  His good friends know that his brother is autistic.  Some are accepting of it and others are not sure what to think of Cooper’s brother.  One friend has done more than accept Bailey as he is but has worked hard to be a good friend to Bailey as well as Cooper.

Cooper has a friend that is a girl.  They were in preschool together, and now are in the same kindergarten class together.  They ride the daycare bus together and are together before and after school at daycare.  Bailey is also attends the same daycare as Cooper and the little girl.  The little girl always says hi to Bailey and attempts to have a conversation with Bailey.  A couple times I have found Bailey and her actually playing together.  The little girl can be bossy which irrates Cooper but when she is with Bailey she is different.  She is still in charge and leading Bailey through the pretend activity they do together but the manner in which she does it is more instructional than trying to control the situation.    She has taught Bailey some important play skills that others have not been able to do. 

I have worked hard to find friends for Cooper that are accepting of Bailey.  Seems like Cooper has done that on his own without any effort.