Very shortly after my son was born and diagnosed with the first of his multiple disabilities I learned I would need to be an ‘advocate’ for him. To summarize, that meant I needed to learn how to deal with very complicated medical, educational, social work and legal systems if I hoped to get him services that might help him.
Being an advocate means being ready for conflict, and a commitment to winning. Think lawyers, without the credentials (usually) but with an unparalleled passion to protect their loved ones.
Once I attended an Individualized Education Plan (IEP) meeting that included eight professionals in various educational areas and me talking about my oldest son. Seven of them did as they were legally obligated and sent me their assessments and recommendations ahead of the meeting. One did not, and she also did not come to the meeting on time. So, in addition to breaking the law, I was irritated.
The meeting was going really well – no issues, and the recommendations were appropriate. Then the last professional showed up, near the completion of the meeting, and dropped the bomb of a whole new diagnosis.
Two of the other professionals in the room told me later that the room became physically colder as they watched me consider her words.
Then the ‘go’ switch went on in my head. She didn’t stand a chance as I went over school processes and legal requirements and her methodology of assessment and lack of insight into current research.
The principal made a half-hearted attempt to protect her employee but quit when I turned my attention on the principal – this wasn’t a fight she knew she could win. And then each of the other six professionals in the room was grilled on their assessment of their colleague’s diagnosis of my son.
At heart that wasn’t advocacy. I wasn’t really looking for answers and I knew how to keep the pressure on that one person under the guise of wanting to find the best educational outcome for my son.
In other words, I was a trained and experienced character assassin using the tools of my trade.
Some of you are thinking, ‘I’ve experienced that sort of bad behavior from professionals; she deserved it.” But I’m not proud of that moment as I think about it today:
- She was doing her job in providing her assessment; I made it personal and looked for ways to personally humiliate her.
- I didn’t want to believe her evidence, but three years later she proved to be correct.
- Her assessment methodologies were flawed, and her delivery wasn’t appropriate, but my response didn’t give her an opportunity to learn anything useful. I was just another angry, confused father rather than someone who could share some valuable insights.
- I did not make Jesus look like greatest treasure.
I am not saying as parents we should just roll over and let school or medical professionals do anything they want with regards to our children. The Apostle Paul would use the laws of the day when it was appropriate, like after he had been publicly beaten and jailed and then told they could leave:
But Paul said to them, “They have beaten us publicly, uncondemned, men who are Roman citizens, and have thrown us into prison; and do they now throw us out secretly? No! Let them come themselves and take us out.” Acts 16:37
We can use the protections granted us. But even more than that, I want educators and government officials and medical professionals to run into a mountain of unmovable conviction about the God-granted worth and dignity and value of our loved ones with disabilities.
It is that very conviction that allows us to engage with grace and reasonableness. God is our ultimate advocate, but unlike me he always brings perfect measures of grace and wrath, with perfect regard for our family members as well as those who are (or supposed to be) serving them, with perfect knowledge about what will ultimately bring him the greatest glory.
That allows us to say things like, “I disagree” and keep it on the subject at hand rather than making it personal by focusing on the skill, experience, competency or feelings of another. If that person lacks skill or competency to get what we need, we keep pressing on, without rancor or anger, seeking the best outcome.
That is much easier said than done, in my experience. I can’t prove it, but I think some people have baited me, trying to goad an emotional, angry response out of me so that they could put the ‘unreasonable, irrational’ father tag on me.
Today I try to remember that Jesus’ blood can cover the sins of that person across the table from me, or on the other end of the telephone, or who just sent the email or letter – they could be brothers or sisters in Christ! If not today, then maybe someday in the future, and maybe God will use our persistent yet hopeful engagement on behalf of our children to reveal himself in all his glory.
Persevering is generally most of the battle anyway, even with insurance companies! (Though I haven’t won all of those battles, either – and God is still good.)
People in positions of authority have lied to me about what can and cannot be provided to my son. Some of them have also treated their subordinates very badly, not equipping them (and lying about it) to do the job they are being paid to do for my son. Those people should be afraid as we advocate for our children (just like in Acts 16:35-40).
Even more so, they should fear the God who made and has deep regard for our children with disabilities:
You shall not curse the deaf or put a stumbling block before the blind, but you shall fear your God: I am the Lord. Leviticus 19:14
Getting the right services and treatments – ones that could make a real difference – isn’t a hypothetical issue in our family, or yours.
But God is greater, and trusting him lets us behave in ways that make him look glorious, encourages us to persevere when all seems hopeless, helps us serve our families better, and doesn’t let the roots of pride or bitterness – which could destroy us – take hold in the midst of our complicated lives.
Yes, even when it appears we are losing and our own emotions are crying out for vengeance. The Lord of the universe will judge rightly on our behalf:
Repay no one evil for evil, but give thought to do what is honorable in the sight of all. If possible, so far as it depends on you, live peaceably with all. Beloved, never avenge yourselves, but leave it to the wrath of God, for it is written, “Vengeance is mine, I will repay, says the Lord.” To the contrary, “if your enemy is hungry, feed him; if he is thirsty, give him something to drink; for by so doing you will heap burning coals on his head.” Do not be overcome by evil, but overcome evil with good. Romans 12:17-21
For we know him who said, “Vengeance is mine; I will repay.” And again, “The Lord will judge his people.” It is a fearful thing to fall into the hands of the living God. Hebrews 10:30-31