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.