Advocating For Your Child

If you are a parent of a child with special needs, you know very well how important it is “advocate for your child.”  It is the hallmark cry of special needs parents everywhere – “We have to advocate for our children.”  What this often means is parents go into their CSE meetings, or get on the phone with their insurance companies with guns locked, loaded and ready to fire.  Special needs parents are ready to fight for their kids.  But I would argue that “fighting” is not always the most effective way to advocate for your kids.  Your passion does not equal getting your way. In fact, going in armed with passion and ready to “fight” is often the most counterproductive thing you can do to advocate for your child.

Over the past 7 years, I have come to know the system well.  I have also noticed something.  While there are school districts that are incredibly difficult to work with (like our district upstate – so I have been there) many districts are eager to help (like the district I live in now). As a former public school teacher and the wife of a public school teacher, I also know that people who go into the field of education are in it to make a difference, and, for the most part, they love your kids and want to help them.  However, I know from my experience both as a teacher and as a mom in my current school community; many parents who are “advocating” for their kids are actually alienating the very people they need on their side to get their kids essential services. Sometimes parents, “fighting” for your kids means laying down your arms and bringing the school onto your team.  Diplomacy – not battle.

So then, how do you advocate for your kid?  The answer is to arm yourself with knowledge and love.

In Matthew 10:16, Jesus exhorted his disciples to “be wise as serpents and harmless as doves.”

Let me tell you a story about when my daughter was in 1st grade.  She had been bused to another elementary school for kindergarten.  She was placed in a self-contained, 12:1:1 classroom (when meant 12 students, 2 teachers) and was gradually mainstreamed into a general education class beginning mid-year.  She did beautifully.  So beautifully, in fact, that at the end of the year they declassified her, meaning she was no longer considered a special education student.

Declassification meant not only that my daughter would be leaving her special education status behind but also that she would have to change schools.  There was no longer justification to bus her to another elementary school.  She would switch schools and go to our neighborhood elementary school.  This derailed her.  If you know anything about autism, you know that change is incredibly destabilizing.   She became consumed with anxiety in first grade.  She stopped eating and was barely drinking.  She would draw pictures of graves and tell me she wanted to go to heaven right now.  She was completely lost and terrified.  Her teacher, who was truly an exceptional teacher, did not get my kid.  I had not yet gotten to know the building team and they didn’t know me.  I was frustrated, consumed with worry about whether or not my daughter was going to be ok.  I couldn’t sleep at night at all.  It was the worst year of my life, and of my daughter’s.

I knew I needed to advocate for her, but I needed to know I would be successful.  So I refrained from my initial instinct to go in yelling and demanding that something be done.  I shoved those very real and very strong feelings down and forced myself to look at the situation objectively.  As teachers, my husband and I were aware that the teacher’s inability to help our daughter was not coming from a place of not caring.  My little girl is different – even by autistic standards – and she just hadn’t seen a child like her before.  The teacher herself was on a learning curve.  We also knew that teachers learn to handle parents very carefully, because teachers are under attack by parents constantly.  She didn’t know me and so she was treading carefully.

My attitude toward each member of the building team was that these were people who were there to help my child, and so I needed to be on their team and I needed them to be on mine.  I want to share with you today how I learned to do that; how I learned to “be as wise as a serpent but as harmless as a dove” in the context of advocating for my daughter.

Be Wise as a Serpent:

So what does it mean to be wise as a serpent, in terms of advocating for your children?

  1.  Arm yourself with knowledge of your child!  In one of my first posts I talked about “being a student of your child.”  That is what this means.  Really know your kid and what is going on inside of them.  How do they think?  What makes them tick?  What are their triggers?  What is the “why” behind their behavior?  Know this inside and out.
  2. Arm yourself with knowledge of what is happening in school!  Talk to your child.  Talk to the teacher.  Ask the principal and the school psychologist what they have observed.  Gather your information well and from multiple perspectives.
  3. Know the laws:  Know what interventions are available for the specific issues your child is having.  Google “IEP goals for children with autism” or “school interventions for kids with ADHD.”  Then read through them carefully, highlighting any that you think may apply to your child.
  4. Talk to any people who have experience with special education.  So, this could look like joining a support group (they have both meetings you can attend or Facebook groups that you can just participate in right from your phone).  It could be that a friend has a friend who is a speech pathologist or so and so’s brother-in-law is an occupational therapist.  Whoever it is, if they have any experience dealing with children who are like your children, talk to them.  You may not use all of their advice, but the more you know, the more you are able to piece together a plan that fits your child.
  5. Read books about your child’s condition.
  6. Speak to and observe your child’s therapists.  You can pick a lot up that way, and it is already specific to your child.
  7.  Maintain perspective.
    • Realize that your child’s teacher and school is probably not “out to get” your child.  Realize that teachers and schools are often held back by policies that go way beyond them (to the district level, city level, county level, state level, federal level).
    • Also, it could be a matter of communication. You may need to find a way to communicate more effectively with the teacher.
    • Maintain the perspective that while your child is the most important to you, your child’s teacher needs to meet the needs of 20-35 students. (As a NYC high school teacher, my husband is responsible for 150). Imagine if you had 35 kids at home.  Would you really be able to give them all that kind of attention?  Ask for things that are reasonable.
  8. Know that the school is responsible for helping your child receive a free and appropriate education.  Your child’s needs very well may extend beyond that definition.  For example, from ages 3-5 my daughter received OT services through the school.  However, once her OT issues were no longer interfering with her education, the school was no longer responsible to give her OT.  She still needed OT for sensory issues that were not affecting her at school.  At that point I let the issue go with the school and sought outside therapy through insurance.
  9. Finally, be proactive.  Have a binder with all of your child’s paperwork (testing, Dr. notes, former IEPs, report cards – any evidence the committee could ask for).  Let them know you are recording the meeting.  Take out that pamphlet of parent rights and put it on the table. Learn buzz words and use them.  Know what you are asking for – what you are willing to let go, and what you are going to insist on.  Hand in documentation in person, and request envelope be signed and ask for a photocopy so you have proof CSE received it.  Doing these things are non-verbal and non-confrontational means of letting them know you are a capable advocate for your child and, if you are in a difficult district, they are less likely to try anything.  By being proactive you likely won’t need to be reactive.

What does it mean to be as harmless as doves?

  1.  Let love govern all that you do.
    • Have empathy for your child, yes, but also for the teacher, the principal, any person in the school that works with your child.  Make it a point to see the situation through their eyes.  Try to understand them.
    • Ask for what is reasonable.
    • Maintain a calm, kind and clear demeanor in speaking to members of your child’s school team.
    • Say thank you!  Be mindful of the progress your child makes and that it is likely due, at least in part, to the hard work of teachers, school psychologists, social workers, the principal.  Every time I email my child’s teacher I thank her.  Just last night, my daughter demonstrated a HUGE social breakthrough, and I knew it was in part related to her work with the school psychologist so I made sure I told her.  People in helping professions are always giving and never really receiving.  Thank them!

The thing I have learned is that when you are grateful, kind, reasonable and knowledgeable, your child’s school trusts you.  You begin to collaborate with them.  Meetings become a pleasure to attend.  Year after year that sick feeling in my stomach before a CSE fades.  My reputation has preceded me.  I am known, in the district, as a person who will work with them and I have always gotten everything I needed for my child.  Go in armed in knowledge and love!  The knowledge will protect you, but the love will win you their respect.