Autism and the fine line between advocacy and annoyance

Cynthia Carr Falardeau

Just for a moment, imagine if teachers graded parents.

As you may know, there are three components to evaluating a student’s Individualized Education Plan (also known as an IEP). The three ratings are categorized as Emerging, Continuing, and Mastered.

I am quite certain that my son’s teachers would grade me as “Emerging” and maybe, with a lot of luck, “Continuing.”

That being said, as parents, there is a fine line between advocacy and annoyance.

I have been told that I am “an intense parent.” My husband says it’s a nice way of saying I am just plain “scary.” I always emotionally reply, “I can’t help it!” I mean I don’t have finger nails like Freddy Krueger. I just find it hard not to fly into a rage. I guess in a Freddy-like manner I fear that the team is trying to kill my child’s dreams. The reality is that they are only trying to help my child function in the real world with the best of intentions.

Deciding when to push and when to hold back is hard for me. I know that you attract more flies with honey than vinegar. I also am certain that if I have been deserving of being “swatted” by my son’s team more than once. If there was fly paper in six foot rolls, trust me, they would have wrapped me in it sent me down the highway!

So how exactly do you roll out the sweet and tame the sour? A great starting point is to determine your strategy with a bit of self-reflection.

Oh it’s not about shame. Quite frankly, it’s a moment for you, the parent, to think about how you are perceived.

Trust me, I do this activity often. As a former retail veteran, I know too keenly that, “Perception is the reality!” It doesn’t really matter what you think, it’s all about how your customers view you.

In a sense, my son’s teachers are my customers. For a moment you may think that I have this all backwards. However, if you think about your actions with a little reverse psychology, you will find that you will approach these situations a little more thoughtfully and level headed. Remember the goal is to get everyone to work together. I repeat this mantra to myself before each IEP or parent meeting: “I will use my head and not my heart!”

So what exactly is advocacy and annoyance? Let’s take a look:

Advocacy is:

+ Being familiar with the IEP goals.

+ Having a clear vision. Know what you want for your child (services, support structures, ect.). There is no menu plan.

+ Working with your child at home.

+ Keeping in close communication with your child’s teacher and support team. This may also involve taking the initiative to determine the best way to communicate (daily journal, email or weekly phone calls).

+ Reading and doing research to make suggestions, share ideas, and solutions. You are part of this team and know your child better than anyone. You can’t point fingers unless you have an idea to contribute. You are part of the solution.

+ Being open to new placements that may provide remediation on subjects or in areas where your child needs help. I will tell you that I get a big fat “F” on this one. It’s hard when you know what your child is capable of and what he/she is actually demonstrating in a structured test setting.

+ Realizing that the issue may not be with your child’s school. It could have more to do with where your child is developmentally. I can tell you that I know my son is at the best school in our county that has the strongest team and efficient resources. There are times when you don’t give up. But you accept that, developmentally, he may not be where you think he needs to be.

Advocacy is NOT:

+ Threatening or screaming at IEP Meetings – level heads prevail.

+ Involving an attorney – could there be anything more toxic?

+ Involving the press – drama does not deliver.

+ Blaming the school for all of the problems – not fair and not realistic.

+ Threatening homeschooling as an option. I have to qualify this by saying that I know some amazing parents in our community who do this successfully. It takes a tremendous commitment and is not for the light-hearted.

+ Not attending parent/teacher conferences – you can’t complain if you don’t participate.

+ Feeling like decisions are made without you, the parent/guardian’s input. If you feel this way – don’t leave a meeting until you completely understand what is going on.

+ Giving up because the world is against you – get the facts, the data and challenge the plan!

The key is to build the communication to avoid revealing your scary side. Creating relationships brings about understanding and trust. It’s not easy. It’s a process. Keep up the reflection and you too will curb your scary side. In doing so, you will be closer to making your child’s dreams come true, and avoid the nightmares of misunderstandings.

Courtesy of Parenting Special Needs Magazine

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