Self Advocacy

When Ryan was working for the California Conservation Corps during his gap year between high school and college, he experienced a very difficult situation, one in which to date  was probably the most difficult he had encountered.  His supervisor was unhappy with his  slow work pace and his difficulty in completely understanding directions.  Ryan was also being harassed by other corps members for  similar things.  This was an important moment in Ryan’s life.  He didn’t have access to anyone to help him.  No phone access  so he could call  me or his father and no teacher or other adult to help him figure out what to do.    There was a decision to be made.  Was he going to say something about his ADHD and learning differences, or was he going to do nothing and accept his fate with his supervisor and coworkers?  Well, Ryan stood up to his supervisor (who by the way should have already known about Ryan’s diagnoses) and “educated” him about himself.  The supervisor’s response was anything but accepting, with the statement of “Well, everyone has issues and that’s no excuse.”  

After Ryan’s in the field assignment was finished and he was back at the main center, he  called his dad and me,  and together we discussed what he should do about this issue.  After discussing various options, Ryan decided that he wanted to transfer to another center.  But, this meant that Ryan had to initiate everythingon his own,  because he was over 18.  No choice.  He either had to see it through and self advocate or stay in a completely hostile work environment.  There was a lot of learning that went on between Ryan, his father and I,  and the California Conservation Corps.  Ryan learned how to become an advocate for himself,  we as parents weren’t able to be the advocates for Ryan that we always had been, and the California Conservation Corps learned about how they needed to do better with their corpsmembers who had diagnosed differences and disabilities.   In the end, I was very proud of the way Ryan handled this situation.

There’s nothing more important than becoming an advocate for your neurodivergent child.  It starts early.  It’s not easy to do.  There’s a huge learning curve.  There’s a right way to do it and a wrong way to do it.  You want to get everything your child needs and deserves.  Sometimes you are so angry that you go into a situation  yelling and screaming.  Other times, you are so exhausted that you just want to give up.  

For me, I needed to educate myself on anything and everything about Ryan’s diagnoses.  I read books, I read medical journals, I talked to other parents, I had long conversations with Ryan’s teachers, therapists and doctors.  I learned what the laws were and what they said (that wasn’t fun).  For Ryan’s first IEP, we hired a professional educational advocate who taught Ira and I what our rights were as parents and what Ryan’s rights were, and she taught us how to become our own advocates.  

As parents, you are your child’s sole advocate.  You make all decisions regarding what is best for your child in every aspect of their life.  But what happens and what does it look like when your child turns eighteen and you can no longer step in?  In the words of the Boy Scouts – “Be Prepared”.  Spoken plainly, prepare your child.  If you want your child to become a self advocate, it has to start early on in their life.  

From the get go, we did not hold back from Ryan who he was.  We always asked him how he was feeling, what things worked best for him, why he was pulled from class, why he was in different kinds of therapy – from speech, occupational, educational and behavioral.  Once he started attending.  Once he started attending  Westmark School in fourth grade, the school began  teaching  Ryan about  self advocacy. 

Beginning in sixth grade, Ryan sat in on parent teacher meetings and was actively involved in planning his educational goals.  Additionally, the school had an open door policy, where any student at any time could seek out any teacher, administrator or counselor to talk about anything that concerned them.  This environment helped the students at Westmark accept who they were, to be proud of who they were and removed any stigma.  The hope was that when these students left the comfort zone of a school for children with learning differences,  that they could go into college and the workplace and be the self advocate they would need to be.    

What happens then when the time comes for your special  child to leave home and go to college or into the workplace?  Are they willing to be their own advocate?  Do they embrace who they are?  Or do they not want others to know they are different?  As parents I believe that we are here to support our kids, to encourage them to love and accept who they are, and we need to be honest with them.  Self advocacy is one of the best ways for neurodivergent students to be successful.  Start teaching your children how to do that when they’re young.  Help them embrace who they are.  You will give them a better opportunity to succeed and they will feel confident to ask for and seek out the help they need.  

WARNING:  Sometimes with all the tools in their hands, our neurodivergent children may still not choose to self advocate for any number of reasons.   Believe me, things do continue to fall between the cracks and all is not roses and rainbows and success around every corner. This is not to call out Ryan or any other young person, but it’s just important to know and remember that managing an ADHD life, especially as a young adult is a huge challenge.  It’s easy from a parent’s standpoint to come down hard on their child/student when they don’t take all of the opportunities available to them.   And to be honest, I have come down hard.  It can be very frustrating and sometimes I wish I could just take over and do everything for Ryan.  But I have to remember that Ryan is the one who needs to learn these hard lessons.  It’s like with any child, right?   I try to remember this.  I try to remember to offer as much support as I can without overstepping. Oh and I try to be patient, and keep my mouth shut,  oh that’s so hard……..