by Emily Minich
Advocating for your child with special needs can be hard. What will people think of you? Will you lose the care necessary for your child? Will you anger someone and cause them to hurt your child out of spite when you are not looking?
I have dealt with all of those fears in the last 22 months of Ilse's life. She was diagnosed at two weeks old with Smith-Lemli-Opitz, a syndrome in which the body doesn't make enough cholesterol to support normal growth and development. She spent a month in the NICU at Medical City Dallas, and I have spent almost more time at doctors and therapy visits than I have spent sleeping. That actually is pretty close to the truth. So I got a lot of experience speaking my mind early on.
Funny fact: Once I took Ilse to my dad's barbershop concert, and since she was being loud, I took her out into the hall and visited with another mother. That mother told me all about how she had to take her child to the doctor once a week for a month.... I nearly laughed aloud. Just the week before I had been to the doctor with my daughter every single day.
Early try at advocating: When I was in the NICU with Ilse, she had her eyes examined by a doctor who shall remain nameless... the nurses acted all afraid of him, scurrying around to prepare for him, frantic voices, hurrying me out. I didn't know at the time that I didn't have to leave: I could have insisted on staying. It is a parent's right to be present during any examination of her child. I didn't know that at the time, though, so I waited around and tried to catch the doctor on his way out to see what the deal was with my daughter's cataracts. He huffed and puffed, and explained himself to me in the most high falutin' language ever. I had no clue what he was saying. A week or so later, I became more concerned with Ilse's eyes, and I caught the doctor in the hall outside her room to ask him to look at her again, something that was absolutely my right to do. He griped me out, telling me he had no idea who my child was. Of course I had made the mistake of thinking he might remember the precious girl he saw not too long before and her inquisitive mother, but he didn't. He told me off in such a rude fashion that I left crying. I went to cuddle Ilse and through my tears I neglected to see her g-tube extension get caught between my stomach and the crib railing.... I yanked it pretty hard when I leaned down to set her in her crib. She flipped out, and right then the rude doctor came in to tell me Ilse's eyes were really fine and to fake apologize for not recognizing me. I kindly brushed him off (I still hate fake apologies and I hate having to pretend everything is fine) and a nicer doctor came in right away. He checked Ilse's stoma and a nurse comforted me a bit, but I was so hurt and angry, and mostly it was because I knew I had been a bad advocate. Not only did I not succeed in getting the care Ilse needed for her eyes, but I hurt her in the process, and I made the neonatologist and a nurse think I was neglectful in caring for a g tube and that I was crying because I had hurt Ilse and was overwhelmed. My knowledge of advocating has come a long way since then, thank goodness!
I have learned to speak up to doctors and others even though it completely seems against everything I've always been (rightfully) taught. I was always taught to respect authority and not to question those who knew more than I did. I was taught to speak in a humble voice and not to be wise in my own eyes. It also seems like the IN thing to put your child last and other people's interests or even keeping the peace first. And while those are valuable and true lessons, when you have a special needs child for whom you are the advocate, it is also vital to educate yourself, insist on what you know to be true regarding your child, go with your gut feeling, and put your child's needs first instead of trying to 'respect' the doctor.
Next week, it will be expected of me to attend the Good Friday service at church. I would love to go. However, my daughter's needs require me to stay home and put her to bed. I am advocating for her by staying home even though people will most certainly wonder where I am. This summer, I would love to be able to take my boys swimming; however, my daughter burns through a tinted car window, so taking her to the pool is absolutely out of the question. I have to advocate for her even though my boys won't get to go swimming.
It is extremely hard for me even now to force myself to open my mouth and say something that could create division. However, I have to make myself do it, and you do too. A parent who has an average child has the liberty of just going with the flow. Often, we parents of kids with special needs just don't. We sometimes must initiate a conversation that will create division between friends, family, or doctors, if that person responds negatively. That is something we have to deal with when we advocate. People just don't always respond well. It's our responsibility to stand up for our kids no matter how uncomfortable the situation is.
If you have therapists who don't wash their hands properly, you must speak up and say that they must. If they get angry at you, then tell them to leave and not to come back. There are other therapists, and anyone who does not value your child like you do should not be given any responsibility over your child's care. If your child is immunocompromised, do not allow visitors into your house until they take their shoes off outside. Block the door with your body; don't feel compelled to move and allow them to come in with shoes just because it feels like the polite thing to do at the time.
I have been discouraged many times, and I've been fearful. I've been told I was arrogant to think I knew more than doctors. I've watched therapists carefully for their treatment of my daughter after a slight disagreement or anything I said asking them to change something. I've spent hours upon hours ignoring other responsibilities and instead researching pediatricians because the one we had was constantly treating me like I was stupid and like Ilse was incapable. I have insisted on gloves before blood draws even though the lab tech leaned over and told another tech I was a germophobe.
The hardest part of advocating, in my view, is when you must advocate within your own family circle. Constantly defending your child's level of development or prognosis is exhausting and hurtful. We expect family, above all others, to understand us and our kids, so when they don't it is nearly impossible not to feel completely unsupported. Give your family time to adjust to diagnoses or prognoses, but when the time comes to speak up in your child's defense, do so regardless of your family's misunderstandings or hurt feelings. Your child must be first, because you are all he or she has.
Many times in this post I have promoted speaking up or putting your foot down if necessary. I would also like to add this: more often than not, all of your advocating can be done kindly. Skipping a Good Friday service or telling a therapist to leave is not hateful or arrogant by itself. Don't make it so by your tone of voice. Remember the old adage: "You catch more flies with honey than with vinegar." And regardless of how much you may occasionally feel that you don't want to catch flies but instead want to eradicate them violently, just remember, you may eventually want that friend or family member's help, so don't burn bridges unless it is absolutely necessary, and then only if it is for the good of your child.
Good luck with all your advocating!
Advocacy: Yep, It's No Walk in the Park
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