As I shared earlier this week, I learned early on that I needed to become an advocate for my child. Now I help parents advocate for their child’s needs. This advocacy actually started before my son was going to enter the programs that the public schools offered! It started when he was born! Back in the hospital when he wouldn’t nurse, when he was sleeping too much. I insisted that they take a look at him and do some observation and testing. Later there were issues with doctors and I advocated for him, moved him to another hospital. I couldn’t have made any better decisions on either account! Trust your gut and get help if you feel like you don’t know the laws well enough or need someone to help you advocate. Most advocates cost a fortune, but I want to offer free or low cost services (subsidized by grants) so I can give families the assistance they need during very stressful times!
Advocacy v. Parenting
Advocacy is by its nature, a cerebral activity and involves great thought and creativity. Parenting is by nature a visceral activity that involves great emotions and heavy decisions.
I know first hand how the feelings that come with children, especially disabled children, overwhelm and confuse us. No words can adequately explain the dread and anxiety that accompany us everywhere we go. We belong to a select club, an elite group of people, who speak a foreign language (“IEP”, “OT”, “PT”) other parents do not know. We emit sensitive radar that only those of our own kind can detect, often with one look.
For the sakes of our children, we must strive to be patient with those whose experiences have not given them access to our perspective. It is our duty to lead these people to a fuller understanding of the beauty and ability within our children. To do this, we must become effective advocates.
Learning About Rules and Strategies
Good advocacy often works like a game. I do not suggest that advocating for the needs of special needs children is trivial. It is just that the method of getting what you need from a school administration has rules and strategies that are often quite predictable.
If you learn and apply these rules, you can reduce the risk that is inherent when you negotiate for educational benefits. I liken this to the difference between poker and hearts.
Playing Poker . . .
Poker is a stimulating game of wager. The fun, the skill and the whole game is in the bet. In truth, the cards make only a marginal difference to the outcome of the hand. It is not what you have in your hand that matters as much as what the other players think you have.
Every hand is a winner, and every hand is a loser. By manipulating the other players at the table, making them believe what you want them to believe, you win the bet. You do not really need to have a strategy for the cards: if you understand people, the cards will play themselves.
And Playing Hearts
Hearts is different. Hearts is all about having a strategy for the cards: how you play the cards given to you. What the other players think or feel is less important than getting them to play their cards in the order you want them to!
Yes, there is minimal bluffing, but at tremendous risk. This is because everyone is paying attention to the cards, not the players. However, the rules of the game give talented players a chance to unload their worst cards at little or no jeopardy to themselves.
In fact, the best hand at hearts is the worst hand played skillfully! If you have a wretched hand, and take every trick, you end up winning the round! Moreover, even if your round goes badly, the game keeps going, hand after hand, until all hands are played.
Thinking Like a Poker Player
Many parents and advocates involved in IEPs use “poker” language to describe the process. They have come to believe that districts, overall, do not act in good faith when setting IEPs, and that they will cheat.
They do not want to “tip their hand” or “show their cards”. They talk about the personalities of the school administrators and staff. Are they bluffing? What are their cards? Are they holding back? Do they care about my child? Do they care about disabled kids in general?
When parents feel like they have to battle educators for benefits, they lose confidence in those educators. When parents lose confidence in their educators, those educators (who are often acting in good faith to do an extremely difficult job) feel unappreciated.
A siege mentality sets in, lines are drawn, and the parties toss therapies and interventions onto the table like chips. They wager with the child’s needs, but rarely does the child walk away with any of the pot. This is why playing poker at an IEP does not work for the children.
Learning to Make Deals
Like hearts, advocating in an IEP might take many deals. The players, sometimes with competing goals, sit down year after year and look at their hands.
What progress has the child made in school? What skills does he or she have now? What are the demands of the next grade? How well equipped is the district or the staff to meet these needs? What resources do the parents have?
Most of the answers to these questions are known to most of the parties at the table. Unlike poker, which allows for more uncertainty to sweeten the bet, IEPs leave little to bluffing.
Either the child has abilities in certain areas, or he does not. Either she can attend in a regular education setting, or she cannot. Either the staff is prepared to deal effectively with this particular disability or they are not. And so on. A skillful advocate, like a skillful hearts player, knows when and how to play certain facts in the file so the child does not bear an undue burden in the education process.
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