Footprints in the Sand: A Call to Parents of Adults with Disabilities

Published on September 24, 2010 by Jennifer Laviano

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I while ago, I wrote a tribute to Eunice and Ted Kennedy, and their legendary contributions to special education advocacy.  In that piece I commented that part of why parents of children with disabilities are at a disadvantage in taking on their school districts is that there is a constant learning curve among this group.  The school district personnel and administration often have an extensive history in understanding special education laws, but a parent's need to know about the IDEA and other related statutes is, by its very nature, time-limited.

For most families, they learn about their child's rights only long enough to get them through to high school graduation.

While some parents are on that track from very early in their child's life, many others don't even begin to learn about special education advocacy until their child is in middle or high school.  They learn what they need to know for those years, and then they move on with their children to the next stage in life, which might include new battlegrounds, like disability discrimination in college, employment, or housing.

School districts benefit from the fact that they are usually more experienced in this adversarial process, as line after line of new parents scramble for information.

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It is for this reason that the “veteran” parents out there, who have seen the special education system from start to finish, are such valuable resources to other parents who are new to the system.  Unfortunately, though, those who are informed are not available to those who are uninformed, and so the cycle goes.

Parents of adults with disabilities, please do not let your impact be mere footprints in the sand, ready to be washed away by the next wave.

I got a very recent lesson on this subject.  Here in Connecticut, the State Department of Education is considering significant revisions to our special education regulations.   A Public Comment hearing was held this week, and we had a pretty decent turn-out, due to some last-minute publicity among the parents' advocacy community.  One mother got up to speak, and she pointed out how shocked she was that she, a former public school teacher, should find herself in a place where she might have to sue her school district over her child's special education program.

She would never have believed she would do such a thing, until an autism diagnosis and resistant school district forced her to learn the special education legal system.

In her testimony, this mother called upon the parents who have come before her to remain in the community.  She realized in hearing some of those parents speak that their insight is priceless.  While I can provide a context and a history to my clients in my special education law practice, that can only go so far.  Much more important are the PARENTS who have lived it, breathed it, and, when necessary, taken on the system.

So I call out to those parents:  do not forget the parents who come after you, who are in desperate need of your guidance, wisdom, understanding, and yes, perspective.

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Imagine how differently you might have handled your son or daughter's education if only you knew then what you know now.  Wouldn't you have loved to have heard from a parent who'd been through the entire process before?  On a daily basis, my clients wonder whether they will ever make it through to the other side.  You who are on the other side of this massive, unwieldy, confusing, intimidating, frustrating, and vital special education system…please find a  way to reach back.  Many, many families need your help.

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15 Responses to Footprints in the Sand: A Call to Parents of Adults with Disabilities

  1. Rochelle
    September 25th, 2010 | 6:09 am

    Some parents just don’t want to hear it. They want to believe that schools will do ‘the right thing’ when presented with accurate documentation.
    It’s not only that school personnel are better informed about caselaw, they feel entitled to manipulate and twist it to their predetermined decisions.
    In the latest fiasco, a district admitted they were using Hjortness v. Neenah Joint School District’s 7th Citcuit Court’s ruling as justification for leaving us out of the process and circumventing substantive standards required in IEPs. They neglected to consider the fact that it was overturned in the Supreme Court as being intolerable.
    Not only didn’t the Utah State Office of Education call them on that, THEY said we’d forfeitted rights to resolution under Garcia v. Board of Education. The people charged with oversight compared two autistic girls who’ve been prevented from participating because minimal accommodations have been refused, to a drug and alcohol abuser who’d been convicted of violent acts and who had dropped out of school numerous times.
    Until states take such abuses seriously … and the federal government if state’s abdicate that responsibility … students whose needs are not met will be turned out into an adulthood they are not prepared to live independeently in.

  2. Amy
    September 25th, 2010 | 10:26 am

    I’ve been reading your blog for a while, but haven’t commented yet – too shy, perhaps? Not sure I have something to contribute to the conversation? This post really caught my attention, though.

    My daughter is 8 years old, and has Down syndrome. I’ve been learning and advocating for her since she was born – one of those rare cases that started at the very beginning.

    I have worked hard to share my knowledge with other parents. I’ve done some basic trainings at parent groups. I’ve taken dozens of phone calls and tried to walk parents through the steps, so they can learn what I know.

    What have I found? More often than not, parents won’t take the advice I offer. They won’t educate themselves. They tell me it’s too hard, too much work, and it’s easier to just let the school district do what it’s going to do.

    The few really good teachers and special ed folks I’ve met tell me that they struggle to get parents to participate. People like me – who are prepared, knowledgeable, and know what they want for their child – are the exception, not the rule.

    How do we overcome this? How do we get more parents engaged and active in this process? How do we help them understand that they can be successfully proactive, rather than emotional and reactive?

    I’d love to hear your thoughts on this.

  3. Jennifer Laviano
    September 25th, 2010 | 10:34 am

    Amy, thank you so much for your comment, and of course for reading. I am fascinated by your comment…obviously the parents who hire me or who seek me out are those who are advocating for their children, are informed or trying to be, so I guess I rarely see the kind of disengagement you are seeing. I have a few thoughts…first one you surely have already considered, that many parents are just so overwhelmed with the daily grind of raising children with special needs that the thought of taking on one more issue is just more than they can handle. To that end, I constantly remind parents and educators that “parent training and counseling” is a related service under the IDEA. So, if a parent needs training to help them support their child’s special education program and to understand their disability, the IEP should include that. I also have noticed that certain networks of parents based on their child’s disability are stronger than others…so, as an example, parents of children with autism spectrum disorders seem to be highly involved and vocal, at least at present. I wondering if you’re seeing the same things when you talk to parents.

    Please keep helping these parents…many parents of students who are nearing the end of their formal education hire me and sit in the chairs in my office filled with regret for not being active sooner. I think it’s natural for parents to trust the teachers and educators and they want to believe everything is going well, so it’s a tough nut to crack, and usually takes an incident or a crisis for many families to begin to question the assumptions they’ve been making. I wish you all the best, and thank you for your comment…I’d welcome more from you. Best, Jen

  4. Jennifer Laviano
    September 25th, 2010 | 10:36 am

    So interesting, Rochelle, I think you hit on the obstacle that Amy also commented on…I think you make excellent points that some parents just don’t want to hear it. I’m glad many more are listening, though.

  5. Jane
    September 25th, 2010 | 8:03 pm

    I’ve been helping other parents advocate, in my school district and through the internet, for the past decade. It’s so much easier helping other people than strategizing and fighting for my own kids. Even when I help people only a little, they often think I’ve helped them So-o-o Much — which tells you how lonely it is out there.

    I’ve spent hours coaching some people, only to see it all evaporate, but sometimes I spend only 20 minutes with someone and they come back to report great success. I’ve had people call me saying, “Is it okay if I give So-and-So your name?” and I always say yes, but only half of those folks follow through, and I’m sad because I know I could have given them things to think about that they had never thought about. My most fascinating (in a way) experiences were accompanying Latino families to their IEP meetings, where I mostly asked questions or just listened. It was amazing to see the educators address their comments to me when they should have been talking directly to the parents, whose English may not have been elegant but was good enough for the job. These parents were convinced that their IEPs went 100% better because of my presence. I don’t think I did much, but what I cannot know is if the educators “behaved better” because I was there.

    On a personal level, I’ve been dealing with IEPs for 15 years for my two kids, now adults, and one still in school. Between them, I’ve had great IEP teams and rotten teams in a half dozen school districts in two states. My current school district has been very decent about a very difficult and costly case, but right now things are not going my way and I’m very discouraged. A month ago we held an IEP meeting, and for the first time in my life, I did not even read the proposal they sent me until today! Why? (a) I didn’t have the energy to fight because there were other fights with other agencies going on at the same time, and (b) I knew we’d be meeting again this coming week to see how things are going and I could have another go at it. I can’t wait till my youngest is out of special ed, but I don ‘t plan to exit for other families because every time I help others achieve victory, I feel like I’ve “gotten even” for the times I was unsuccessful on my own kids’ behalf.

  6. Trea Graham
    September 27th, 2010 | 1:23 pm

    I have been working as an education advocate helping parents get the services their sp. needs kids need from their respective school districts. I help kids one at a time, but help them I do. Parents learn from me how to be their kids’ best advocate. My son with sp. needs is now 29 yrs. and works for duPont running their advanced fiber research lab. It can be done!

  7. Carrie
    September 28th, 2010 | 6:33 pm

    Hi Jen, I just had to comment because this is such a great, meaningful post! Awareness and education to parents, so that they can stand a chance at fighting for their kids, is so critical! Thanks for sharing this point of view on the issue!

  8. lyn
    September 29th, 2010 | 1:31 pm

    This is my first visit to your site. I really enjoyed this article. I look forward reading the archives too.

    I have had some of the same experiences as the other posters. I suggest resources but if a parent is in denial they won’t use them.

    A RSP teacher made veiled threats against my younger child if I advocated for my son. This really made my mommabear hackles go up. How many other parents with siblings did he do this to? I reported him to the school administrator & had him removed as my child’s case carrier. I have warned incoming parents about this teacher and recommend that they request another RSP teacher. He is close to retirement. Another parent-advocate suggested that I pursue this and have him fired anyway. What precedence is there for this situation?

  9. Jennifer Laviano
    September 29th, 2010 | 9:42 pm

    Lyn, thanks for reading the blog. I suggest you take a look at this article for some guidance…best, Jen

    http://www.connecticutspecialeducationlawyer.com/current-affairs/court-rules-to-protect-teacher-who-protected-kids-with-disabilities/

  10. stacey ashlund
    October 6th, 2010 | 12:42 am

    Thank you for this call to action for experienced parents! Our son was diagnosed as deaf at just a few weeks old, and we are forever thankful to AGBell for connecting us with experienced parents who both guided and inspired us. Knowing what was possible kept our spirits high and fueled our fighting spirit when we needed it in dealing with less-optimistic professionals. Now our son is in middle school & doing really well. I’ve volunteered as the special ed rep to the PTA at our school, district, and county, as well as serve on the Community Advisory Committee on special ed for our school district. We work hard to reach new parents through parent ed events, online discussion groups, parent reps at each school, and community outreach. We always encourage more parents to be involved and share their stories. Thank you for expressing the importance of this communication!

  11. LindaA
    October 12th, 2010 | 8:22 am

    Great article. This is my first time visiting your blog and I certainly enjoyed reading everyone’s responses. It reminds me to continue advocating for my students and to continually reach out to those parents who need support and to help them find their voice. Your comment “Parents of adults with disabilities, please do not let your impact be mere footprints in the sand, ready to be washed away by the next wave” was very powerful and inspires me as an educator to make a difference.

  12. Jennifer Laviano
    October 12th, 2010 | 5:14 pm

    Linda, thank you so much! I am always thrilled to get a comment from an educator, it gives me much hope to know you’re reading my blog. Best, Jen

  13. Robert Wilson
    October 18th, 2010 | 4:21 am

    thanks for the post

  14. The Total Transformation
    November 2nd, 2010 | 1:51 pm

    While we’re dabbling in the area of Footprints in the Sand: A Call to Parents of Adults with Disabilities | Special Ed Justice | Connecticut Special Education Lawyer, The objective in existence for nearly everyone comes down to some positive outcomes. This also applies to raising our children which is the most essential thing we may ever do. Positive parenting brings several benefits that you can appreciate for any lifetime.

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