This week I was reminded of a story my parents love to tell about me.  I was a preschooler, and it was my sister’s birthday and our grandparents had sent her money so that she could buy her own gift.  I was not listening to my parents about the fact that my sister had money to spend, and they were not getting her anything.  Instead, I stood in the shopping cart screaming about how mean they were being and how much they did not love me.  I pointed out all the other children in the store and how much their parents loved them because they were buying them toys.  My parents where both amused and embarrassed as most parents would be, however my sibling was furious.  I had sucked all the joy out of what was to be her special time.  My Dad was forced to remove me from the store so my sister could pick something out without any of the drama.  Other parents were looking at my parents and shaking their heads, turning away, and muttering about how their child wouldn’t do something like this. Looking back on it now everyone can laugh at it and talk about what a drama queen I was being, but in that moment it wasn’t so funny. 

Anytime, I see a child doing something similar in a classroom.  I try to make eye contact with the teacher and smile and let them know it is okay.  I step in and lend a hand where I can.  We work through the situation together and then later we process it.  I try to help the teacher see the learning experience for the child in the situation.  I let them know that I think that they did a good job with the child even in the middle of a difficult situation. 
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When a child is behaving in this manner it can be exceedingly difficult to continue to be calm and rational, especially if you have other children you need to look after.  It is important for the teacher to feel supported and not judged.  Sometimes it is too easy to tell the teacher what they should do in this situation, however it is just as important to let the teacher know what you saw them doing right.  Giving positive feedback is just as important with teachers as it is with children. I encourage everyone this next week to see what a teacher, a parent, a guardian and/or grandparent is doing well with a child and tell them about it.

In one of my classes the professor assigned My Baby Rides the Short Bus:  The unabashedly human experience of raising kids with disabilities, this is a collection of personal accounts from parents who are raising children with disabilities.  In the chapter “Jackpot” by Amy Saxon Bosworth, she opens with “Every parent with a “special (gag) child” know what I’m talking about when someone tells them again what a present they’ve received, what a strong person they must be to be to have been given such a magnificent gift,” (p. 144).  When I read this for the first time I was like yes!  I understand where she is coming from, I am not a parent of child with disabilities but a sibling. 

I do not know how often I heard about how wonderful it was to have him (my big brother Rob).  I remember thinking when people came up and said this to us when I was little they were nuts. They did not spend hours upon hours looking for him in the woods, because he decided it would be fun to hide from everyone.  They did not have to listen as he sat on our back porch singing at the top of his lungs with the dog a Kenny Rodgers song.  These are annoying to a younger sibling, but not horrible. 

I know my parents would have completely different things that they say that make him less then wonderful.  Like the time they were in the Barnes and Noble and he picked up the biggest most expensive book and wanted them to buy it for him.  He was in his mid-twenties when this happened.  My parents tried to tell him they could not afford the book and he needed to put it back.  He was having none of this, he attempted to spank our Mom in the store.  This brought the attention of the employees and eventually the mall security. 
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I do not tell you these things to make everyone believe that he is horrible and impossible to get along with but let everyone see that he (like everyone) has good points and bad points.  He can be wonderful, but he can also be a terror. To tell a parent, a sibling, or any family member how wonderful it must be to have such a special individual takes way part of who they are.  Instead of saying how wonderful it is to have them, acknowledge that it is difficult to raise a child like it is for every parent.  Share with them stories about raising children that are difficult and listen to their stories that are difficult.  Raising a child with disabilities is a journey and one that goes a little smoother with support.

Growing up with a sibling that was developmentally delayed, I learned the importance of being an advocate for your child.  Parents are the best and first advocates for their children. My parents often faced people who had outdated beliefs and thoughts about my brother, Rob.  They often faced people who thought he could do nothing and accomplish little.

My parents were told after Rob was born that he would never be able to walk, go to the bathroom on his own.    My brother learned to walk at age three.  He was potty trained at the same age.  They were told my brother would never learn how to read, so there was no point in making sure he knew his alphabets or the sounds of letters.  My parents pushed educators them to teach him the alphabet and sounds the letters make.  They push my brother’s teachers to challenge him.  He can read at a second grade reading level.  My parents believed in educating individuals on who my brother was and what he can do.  They educated Superintendents, Special Education Teachers, friends, and family.  They were and are his advocates every day.

Advocacy journey is not easy and is often frustrating and discouraging.  I remember many tears.  I remember discouraging moments, but my parents never gave up.  They always wanted Rob to be challenged.  They wanted him to be the best version of himself.  They encouraged, educated, and pushed the education system to expect and want the same thing for him.  Even after he graduated school, they did not stop being his advocate. 

​Rob is now a 49-year-old man.  He has accomplished many things thanks to our parents who fought for him to be challenged and for him to reach his full potential.  He was often limited by those who were supposed to give him an education, but he had two people that believed in him and who were willing to educate those around him about what he was truly capable of accomplishing.

If you have or know of a family struggling with being an advocate for their child, encourage them.  Take the time to get to know the family and the child.  Let them know they are not alone in this struggle for people to look beyond their child’s delay and to see the person beneath.  Let them know they have the right to ask for their child to be challenged and the expectations to be set for them should encourage them to grow.  

​Today, I wanted to share a little bit about growing up in a small town with a sibling with a developmental delay. 

My family moved from the Bay Area in California to a small town in Washington in 1980.  It was only 5 years into the Education for All Handicapped Children Act.  Prior to this many children with disabilities ended up in Mental Health Institutions.  In fact, when my big brother was born in 1972, my parents were encouraged to place him in an institution and forget that they have had him.  This idea of not hiding developmental delayed children away was new.  I am sharing all of this to help set the stage what would happen.

When we started in the public school in our town.  Individuals with developmental delays were kept separate from all the students.  It would not be until I was in the 4th Grade.  That the school decided to start integrating some of the students from the special education program into classes like Gym and Music.  There was only two of them that would be joining the classes.  They both had Down Syndrome and one of them was my big brother.  The school decided that with our relationship the best place to put them was in the same class as myself.  I was expected to watch and help them in class.

I remember thinking, I am 10 years old.  How am I supposed to be his teacher and make sure he is doing what he is supposed to do, my big brother.  This would start to change the dynamics of how my brother, and I enter acted.  I started becoming the big sister and my job was to look out for and take care of him.  It was strange to move from being the youngest sibling (chronologically) to the older responsible sibling.

I would like to say that this type of thing does not happen anymore, but I think that would be incorrect.  Unfortunately, to many adults do not know how to handle or deal with someone with a developmental delay.  Whether these adults are in education or not and when they cannot handle or deal with it and a parent is not available, they rely on siblings of the individual (if they have them). 

​If you are an educator and/or an adult who is interacting with a family with a child that has a developmental delay.  I encourage and beg you to please help keep the siblings as siblings and not care takers.  Let them enjoy being together and interacting like any other siblings without worrying about how to take care of them like they are tiny adults.