5 Secrets to Successful IEP Meetings

I am procrastinating. I am supposed to be preparing for my daughter's early morning IEP and instead, I am writing this blog post.

I got to thinking about what makes an IEP meeting successful and I came up with 5 things I personally strive for when I walk into my child's classroom. Now remember, I have three separate IEP's to pay attention to, so I have a little bit of experience in this area. Just a little.

Secret 1
Always Get A Draft - Yes, you can get a draft of the IEP ahead of time. Its important to ASK for it ahead of time as well.  Teachers are just like you and me and they can get swamped and do things at the last minute, so you want to tell them you would like a draft to review before the actual meeting.  A good time to ask is around the time you get your IEP invitation.  This gives them time to get it ready and get it to you preferably 5-7 days before the meeting. During that time you can review it, highlight it and write down your questions early. Then you can confidently walk into your child's meeting totally prepared like a pro.

Secret 2
Put It in Writing - How many times have you had a conversation with a teacher either on the phone or in person and you swore you asked for XYZ and the teacher said, "sure, yes, no problem," only to find weeks later that XYZ was never entertained, worked on or done? It happened to me more times than I care to remember. Don't dare bring the XYZ (undocumented) conversation up at the IEP meeting. I'm sure you may have received a response similar to this; "ah well, Ms Flamer, I don't remember us discussing that blah blah blah, we are working on this goal." Does this happen to you? Well not anymore, because from now on everything and I mean everything will be in writing. Maybe you don't have time to draft an official letter? No problem an email will do, or my personal favorite, I write it in the communication book and make a copy of it. If  I don't see any movement in a week, my teachers get a call and a reminder and a copy if necessary. This secret can also be entitled "Get In Writing," as you always want to make sure any promises, proclamations and plans the school makes are in writing as well.

Secret 3
Travel in Pairs or More
I learned this the hard way. Little old me walked into the school for a meeting that I thought was going to be simple, quick, and short. I turned into the classroom to see the teacher, the principal, the guidance counselor, the school psychologist, the speech therapist, the occupational therapist, the butcher, the baker and the candlestick maker. Since this wasn't an official IEP meeting I was only expecting the teacher and the speech therapist. Here were six representatives from the school, who had already discussed what they were going to do with my daughter, ahead of time, with out me, now all talking at me. To say I was just a little intimidated would be an understatement. So from now on I travel in pairs or more. Ambushes are best handled with back up.

Secret 4
I Know its a Pain, but you will Explain
Not all teachers and professionals are like this, but occasionally you will meet the rare arrogant, jackass who gets off on using professional jargon and acronyms like everybody is supposed to know what they mean. A lot of teachers and therapist have had cultural sensitivity training and are aware to not overly tax parents minds with terms they are not familiar with. After doing this for awhile, you do start to understand these terms, but even I, yes I, Miss Know-It All 2013 will ask someone nicely to explain what exactly MDE (Multidisciplinary Evaluation) stands for because sometimes I forget.  As parents, we don't use these terms on a daily basis and its ridiculous to expect us to bring our Special Ed to English dictionary with us every time we meet with our kid's team. So don't be ashamed, if you don't know, but make them explain.

Secret 5
Tell Me Something Good
Yes, I'm talking about the song by Rufus and Chaka Khan (a noted supporter of Autism, I might add). I hate absolutely hate to go into an IEP meeting and hear nothing but what my kid can't do. How bad their behavior is and how difficult it is for them to do AB and C. No, I won't stand for it.  You must "Tell me something good" about my child. If you don't, I will and it will be written in my parent statement that will and must get added to the IEP. Individual Education Programs do not have to be a short story on how behind little Jimmy and Sally are. They can be plans that build on strengths while identifying challenges.  ALL our children have strengths and these things need to mentioned if not promoted throughout the IEP.

These are my 5 secrets that get me through my 3-9 IEP meetings a year. I do have to mention that this year my kids have phenomenal teams and so far I have only been to four if you count the one I am going to tomorrow. For more insight on what goes on behind the scenes check out "What Really Goes on Behind the Scenes of an IEP....."

Please share some of your "secrets" in the comment section, I would love to hear them, I can always add something new to my repertoire.

Falling Through the Cracks; When African American Children DON'T Get Diagnosed

Do a cursory web search on "African American's" and "Autism" and you will notice one clear trend;

Autism Diagnosis Often Occurs Later for Black Children

Under-representation of African Americans in autism genetic research

Autism diagnoses tend to come later for African-American children

We are not at the table. Our voices are not being heard. Our needs are not being studied and our children are falling through the cracks. Okay, okay, so I am a little biased, I have 3 children on the spectrum, so I tend to be a little more concerned than the average parent. This is an issue that is not being adequately addressed.  

First and foremost, let me state what this is NOT about;  its not about money, its not about cures, and its not really about race.  Its about access and outcomes.  If you don't have the access, you don't get the outcomes. Truthfully an African American child on the autism spectrum has no greater special need than a white child on the spectrum. In fact one study suggest that it is actually socioeconomic status not race which determines outcomes for children with autism.

.....children of highly educated parents reap greater benefits with respect to early diagnosis for autism and consequent opportunity for engagement in treatment, net of the severity of their disorder, than those whose parents are less educated. In general, children of high socioeconomic background continue to be diagnosed earlier than the less privileged, and although the gap has diminished it remains significant.

The key is early diagnosis. Children who are diagnosed earlier have better outcomes than children who are diagnosed later. Children benefit from specialized therapies like speech, occupational and ABA based therapies at an earlier age which can be crucial to increasing their later quality of life. Depending on what state you are in, many of these therapies can be obtained through and paid for by medical assistance if you qualify and/or early intervention. Most doctors know about these services and can easily refer children with developmental delays to these programs. Is this where the breakdown begins? Are doctors not referring our kids to be developmentally screened or are parents not informed about developmental milestones? It could be a combination of both.  In my own personal experience, it was I who asked my child's physician for help when my son started to regress. She then referred me to Early Intervention.

It is usually at this point where the conversation stops.  In my research I could find no substantial initiatives to improve the numbers of African american children getting screened for autism.  Why is this?  I have a theory, one I haven't seen readily discussed.

In another sphere there is a campaign to decrease the over representation of African American male students in special education.  Advocates and parents are trying to get our misplaced male children out of special education and back into regular classrooms.  This movement is in response to the racist practice of funneling black children with perceived behavior issues into special education classrooms. The NEA (National Education Association) states on their Blacks: Education Issues page;

Far too often, Black students—males in particular—are unnecessarily placed in special education classes, while the number of Black students who take honors and advanced courses remains significantly below that of other groups.

Hmm?  Now let me think.  What other group of individuals is also overwhelmingly male? Could this be the reason why black parents shy away from early developmental screening and diagnosis?  An unconscious aversion to involving their child in the special education system? As an advocate, I can admit that dealing with school personnel is daunting. For the average parent with no training, the special education system can be extremely intimidating. Even with IDEA regulations, there are some schools that try to bulldoze families into education plans that are far from individual.
Even if the two issues are connected, I can't say with any confidence that this is the primary force in the later diagnosis of African American children. One must also consider the general distrust that Black parents have for doctors;

A cross-sectional survey of parents who accompanied children to a primary care clinic found that 67% of African-Americans distrusted the medical establishment compared with 50% of white parents (P=0.04), Kumaravel Rajakumar, M.D., of the University of Pittsburgh, and colleagues reported in the February issue of Archives of Pediatrics and Adolescent Medicine.Distrust was inversely associated with education, so that while 74% of black parents who had less than a high school education were wary of doctors and researchers, only 44% of those who were college graduates shared that feeling (P =0.03), the researchers found.

- African American Parents Distrust the Medical Establishment 

Here we are back to the education of the parent; one of the leading predictors of socioeconomic status, driving the issue of trust in the medical establishment for black families.

Unfortunately, we don't have an autonomous black community where we are all on the same page when it comes to the social issues that effect our families and even if we did would this issue even rate in the top ten of "black issues?" No, I don't think it would.  Here is why it should.  The latest data from the CDC state that 1 in 88 children have been identified with an autism spectrum disorder and in the black community 1 in 98.  I am not trying to scare anyone, I hate statistics. What I hate even more is people falling through the cracks of society - a nonverbal adult who was never given access to assistive technology and has no functional communication skills other than vocalizations. Or teenagers with severe behavioral issues being heavily sedated and restrained. I can't tolerate vibrant and intelligent individuals that have the potential to live and work in the community being underestimated and stifled.

So with all this talk, do I have a solution? Yes I do. Of course I do. In researching for this post, I noticed a number of splinter, grass roots attempts to address this issue. I believe that all of us who have been working on a small scale in our own communities should band together and form a greater network to start creating our own PSA's and materials to disseminate nationally. This campaign has to go hand in hand with an advocacy component to address the misuse of the special education system as a warehouse for "problem" black youth. Possibly creating a parent curriculum on how to navigate the special education system and advocate effectively for your child -- one for parents of children who need special education and one for parents who are trying to get their child out of special education. In addition screening must be culturally competent and be able to get to the families who aren't seeking diagnosis due to fear or mis-education. Also, let's not forget about our Hispanic brothers and sisters (an incidence of autism of 1 in 127) whose children are also diagnosed much later and whose presence is also missing from the table.

No more kids falling through the cracks, Autism Awareness, now in black, brown and yellow.

Please comment and share your ideas or techniques to build autism awareness in the African American and Hispanic communities.

Statistics from - Autism Rates Rising Sharply, CDC Reports and the CDC