Realistic Advocacy: We need the ‘bad’ with the good

Advocacy is a tricky thing. It is often confrontational, and many of us have a difficult time with confrontation. When it comes to our kids, we tend to add “emotional” into that mix. I have been in what seems like 4000 IEP meetings, as a head teacher at a residential school, as a parent, and as a member of “the team” for kids on my caseload in my current position at CAR. I have been on all sides of the table, and feel like I have a pretty good understanding of what each role brings to that table when they arrive.

During my first IEP for Heather, after she had lived with me for about 6 months, a communication specialist said the words, “Unfortunately, because she is 11 years old, the literature does not support that Heather will make any more gains in this area.” A number of things went through my mind, such as hope that I had never said anything so insensitive to parents of my former students. I was appalled that a “professional” would say such a thing at all, never mind to a parent. I was not expecting a magic spell that would suddenly unleash full sentences from Heather’s mouth, but there were many factors involved in her lack of communication skills, including the fact that she spent the first 10 years of her life in a predominantly deaf home. I was also considering the fact that in a mere 6 months, she HAD made gains in her communication, not only by learning new words, but also correcting words she previously mispronounced.

I’m not sure what I actually said in response to the ‘literature’ that did not support the gains my girl was, in fact, making, but I do remember walking out knowing that I would never ever let anyone tell me what Heather would or would not be able to do.

Since then, I have learned that are some battles we fight, and some we don’t. Some we write letters about, some we quietly gather information from any source available, and build our case. There have been battles I have won, and some that I have lost, and I’m ok with that. One of the biggest things that I have taken away from the last 10 years is that in order to get Heather the services she needs, we need realistic reports. Unfortunately, that means negative reports. I need the accurate and honest report that says she functions at below kindergarten level in all areas, at 20 years old. Do I like hearing it? No. Did I cry through an entire IEP meeting when they listed off the data on her negative behaviors- upwards of 90 aggressive episodes in 3 months? Yep, sure did. But that report got her the 1:1 support that she needs to thrive.

As I look towards 21 (in RI, transition happens at 21, not 22), I am being asked about graduation and diplomas, and how she needs one more alternate assessment if I want her to get a diploma. Honestly, I understand that some parents want that for their child. But, for me, I really do not want to waste any time in her LAST year of legally guaranteed education on any sort of assessment. I want her in the classroom, or on the field trip, or doing her vocational work. I don’t care about a piece of paper at the end of the year, because it’s not going to change anything about what happens next. What matters is what she learns- and I will squeeze every ounce of learning out of her school.

The other thing that matters is the reports. The assessments. The incident reports. We all want to hear wonderful things about our kids. But if we have reports full of pretty narratives that list off all the amazing qualities that we already know, and then we send those to DDS, and ask for services, we’re in for a fight. I know how amazing Heather is. I know she is funny, and bossy, and loves to “work”. I know she thrives on the thought of helping someone. Those things make her awesome, but they don’t get her services. Those awesome things about her become apparent once you get to know her, if she has the right support. Unfortunately, without all the honest, accurate, and yes, “negative” reports, she won’t get the right support. I need the reports that say, without 1:1 support in all settings at all times, Heather is a danger to herself. And sometimes to others.

With support, Heather is awesome. To get that support, we need to be honest about the not so awesome. And I’m ok with that.


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