Eleven things I know this minute about advocacy – part of the advocacy series

1.   It works. Asking for what you want creates a better chance of getting it. Do you always get everything you are asking for? No, you don’t just like in real life. There will be compromises. There will be battles lost. You will however win the war. Your objective is that your kid gets what they are due and then some if you can work it.

2.   It’s a privilege. OK, in the U.S. it is a right and there a myriad of organizations that provide assistance many based on income. But, as a global citizen you are in the minority of humans who have some access to advocacy assistance. In most of the world advocacy is a luxury, a pipe dream or ain’t-never-gonna-happen. On those days you feel done in by the grind of advocating remember you are lucky.

3.   You can do it. I hear people say, “I don’t like confrontation.” “I don’t know what to do.” “Why do I have to do it?” It’s your kid you have to get over your insecurities, fears, etc. Learn how to do it. Ask for help from bossy mothers you know. We love to tell people what to do. Google services in your area – for real.

4.   Choose your battles. You do not have a lot of time. Decide what things will have the greatest impact on your child. This is why I didn’t tell the woman who taught Thorin’s dance class that making a big deal out of him wanting hugs just made him look like a freak instead of an affectionate kid. It’s also why I didn’t tell her he deserves the same amount of instruction time as those little princesses in the pink tutus. It isn’t like any of them were destined for greatness either. If I had the time I would have read her the riot act instead we pulled him from the class. She wasn’t worth my precious time. And – my husband asked me to leave her alone.

5.   Be willing to fire people.  For the most part, you can educate people. Most of the time things change for the better for your child. Yay! But, sometimes you have to fire someone. For instance – the doctor who refused to give a diagnosis of asthma to Thorin. He gave us a nebulizer and meds but no referral to a pulminologist. He was however more than willing to show up at the hospital to visit Thorin who was brought by ambulance to the ER for an asthma attack. He no longer has the privilege of treating Thorin.

Our awesome new pediatrician talks to the  pulmonologist about his confirmed diagnosis of asthma. (She actually talks to all of his health care providers. The nurses at the clinic fight over who gets to treat him. He is loved.) Thanks to firing the doctor we now have the right medications and asthma protocol.

Our bad doctor got in the way of Thorin having a better life. He also said things like “If Thorin were normal…” which made me want to say, “If you weren’t such a D-bag doctor…”

6.   The Golden Rule. Treat others the way you want to be treated. I like to use humor, intelligence and my amazing Midwestern charm to get things done. Most people are good and decent and they don’t know they are doing something wrong. And – if that fails “Go for it – do what you have to.”

7.   Stop apologizing for being a bitch. I have heard several times, “You are a great advocate for your son.” and I know sometimes its code for being a bitch on wheels. This is what I tell myself, “Adults with Down syndrome who drive, go to college, own their businesses, get married, etc, etc, etc, probably had mothers who advocated on their behalf.”

8.   Be bold. Fortunately, I have authority defiant syndrome. (Which is different than oppositional defiant disorder. There you just want to fight with everybody about anything. In other words, non-productive behavior). The gift of authority defiant disorder has benefits.  When told we should not “bother the Assistant Attorney General handling Thorin’s case” I ignored the advice and emailed him. We ended up talking, he gave me his cell number and he told me to call whenever I wanted. This relationship was borne of mutual respect.  This guy thinks of Thorin as one of the cases in his career where he made a difference.

Second example, before Thorin’s custody was determined we had several hurtles. In one instance, Ward and I were instructed by DHHS to take Thorin to the Abuse Clinic (Seriously, it’s called the “abuse clinic”.) to be observed by a psychologist while he interacted with his biological mother. So, we requested an appointment with the psychologist. He said, “I have never had a foster family ask to meet with me.”  That is catnip to someone with authority defiant disorder. He added, “I can’t tell you anything.” Our response, “Right, but can you listen?” He listened. More important he heard us.

9.   There is a learning curve. I have a master’s degree in social work and have worked as a case manager, advocate and therapist. When it comes to Thorin I am learning all over again what advocacy is. There is an emotional component to advocating for your child that is huge. Educate yourself, ask for help from your local or state entities and ask other parents with who have kids with special needs. They want to help you. Everybody wins with this approach.

10.Know you will make mistakes. Accept this as reality. Mistakes are how you learn to get it right. People that can admit they have made mistakes Rock. Hello, Rock Star!

Related issue – the other thing is sometimes you will not make a mistake but it is in your best interest to apologize. Don’t go overboard just say, “I wish things hadn’t been so clunky and we got to this decision another way. “ Why? Because sometimes having peace with other humans is more important than being right especially if you got what you wanted.

11.Don’t worry what other people think about you. At times, family, friends and professionals will consider you anxious and hyper-vigilant. I don’t really care what they think and you shouldn’t either. (Hey, I think all sorts of crap about them, too. Walk a mile in my shoes and I will try to do the same for you. Peace out. ) I don’t want our son to accept the low expectations countless people have bestowed on him. That objective tends to make me anxious and hyper-vigilant.

12.Remember what drives the train. You love your kid more than life it self. (I couldn’t help myself – eleven isn’t enough.)

Yea, I know it’s supposed to be “10 Things”.

13. Make your own rules if necessary.

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