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Avatar of Julia Roberts

by Julia Roberts

Traveling Options

April 20, 2011 in Featured, From Julia by Julia Roberts

Not long after the kids were diagnosed with ARPKD I came across that popular essay that many people in the special needs community identify with and it’s of course called Welcome to Holland. It uses the comparison of raising a child with special needs like landing in a place like Holland when you were really expecting Italy.

When I first read it in those early days, it resonated with me. It did because I was still wrapping my mind around raising two kids with unbelievable needs and it made sense…I wanted healthy kids, I didn’t get them, but I still love them.

I got to thinking about Holland and the pretty picture I had in my head. I thought sure, it’s pretty, but it also sucked. For me. Windmills weren’t all that great, and well, tulips are no sunflowers. I’ve been known to even cuss about Holland. For a lot of people I know, it’s a metaphor that really speaks to them. I actually find it beautiful that it speaks to them, cause it is lovely, in it’s own way (that doesn’t speak to me). To embrace what feels right is a lot of what parenting is at its best, right? I embrace that we are different, because we can learn from each other if we’re open to learning. It’s what makes my little corner of the world interesting.

When Dawn and I were working out the plan (yes, that’s ongoing!) for this site we talked a lot about what type of community we wanted to build and we always came back to an inclusive one at the core. We wanted to bring to focus different resources for families and create a safe place for dialogue.

I think we’ve done that and I’m proud. Do we believe/get behind every idea presented on the site? Um, no. But I’m proud that we share what we do and for people to present questions, if they desire. Is everyone going to agree? Um, no. Because that’s not real life (not in my world anyway).

We’ve had to defend someone on this site who was challenged in an aggressive way instead of in a way that fostered discussion. Unfortunately the situation immediately resulted in a community member leaving the site and for that I feel bad. I also feel bad that there wasn’t a continuing dialogue that offered a different point of view. The back and forth conversation never happened so that member was never able to share her point of view.

We present resources and we trust that people in the community will do the research they want to and need to to make the decisions that are best for them/their kids. Who are we to decide for them, when a resource has a large following/believers in ideas that work for them? For the comment that was left? We won’t delete comments like that but we do have to interrupt and say whao, let’s talk it out.

Some vial and hurtful comparisons were made in light of the situation which in this case pretty much tells me we can’t even agree to disagree, which is troubling. In the end, for us, presenting resources wins out, because everyone deserves to find their village. Even if it’s in Holland. What works for one in Holland might not in Italy. Also? If you want to travel between Holland and Italy, we’re behind you. Don’t want to see either? Don’t fly there. I defend your right not to go. I also defend our right to present all of the travel options.

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Avatar of Julia Roberts

by Julia Roberts

Markers of Time

March 30, 2011 in Featured, From Julia by Julia Roberts

I’m a fairly organized, detailed person. In fact, I’m probably borderline (ha!) OCD. This is all extremely helpful when parenting a couple of kids with special needs.

It also makes me want to record everything. That’s probably a good thing, right? I think I do it because I’m pretty sentimental. Plus, well, the kids have a life-threatening condition and so I feel like I have to. I have to.

One of the things I’ve noticed is that I can recall with certainty the date of nearly all medical events for my kids. Is that strange? I can almost tell you where I was when I received an important call (in the car when we learned my son would need EPO shots) or the details of a big visit to the hospital with one of the kids (the room color and temperature of the room where my son was diagnosed with a kidney disease). You know, little details.

I know I have my blog and scrapbooks at the ready so I don’t necessarily need to remember all the details, yet, I do. I think it is my internal way to honor their struggles. When I remember the details and can have long conversations with my kids about what has happened to them physically and emotionally I like to think that they feel like I was there; that they weren’t alone. In the isolating world of growing up with a chronic disease and learning difference I want them to know that I was there with them even though intellectually they know it.

A couple of times I remember haunt me. I think about what I could have/should have done differently. Many of of the time markers I hold on to are ones I can recall with pride that I (or the kids) handled everything the way I (they) should have.

A haunting: I wished I’d pushed harder one day before I did when my son had a horrible, painful surgery experience. It was night, he finally fell asleep but he was in horrible pain for a long time. It was his birthday. February 2007.

A good one: I worked around a doctor who would have allowed my daughter to go on dialysis but in a stunning turn of events they relented after a 2nd opinion and approval at another city’s transplant center. That happened in February 2009.

What are two of your time markers?

 

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Avatar of Julia Roberts

by Julia Roberts

Parent Labels

February 16, 2011 in Featured, From Julia by Julia Roberts

Robert Rummel-Hudson (You know him, Author of Schuyler’s Monster: A Father’s Journey with His Wordless Daughter), proud dad to Schuyler, had a post yesterday about a conversation that started because he shared that a music teacher was telling parents they couldn’t attend a demonstration at the middle school Schuyler would be attending. He then sent a note, then she sent a note and well, it felt wrong to him.

Someone made a comment on his Facebook update about hover/helicopter parents and he explains in this post his feeling about it and it hit a nerve with me. I am what could be (and probably have been) called a hover/helicopter parent. He much more eloquently communicates why it’s insulting for people to say this to parents of special needs kids.

He’s claimed this as his one thing NOT to say to parent like us:

“The term “helicopter parents” is meaningless, inappropriate and insulting to parents of kids with disabilities. Don’t say it to us. Don’t even think it about us. Save it for Toddlers & Tiaras.”

I’m not going to say anything different really than he shared in that post except to say that in my experience it pays to assume your child is the exception to the rule – as Rob and his wife, Julie often do. It’s mandatory that we go through life doing so in order to make sure our kids are protected, cared for, educated and in environments that help them flourish. If we don’t monitor the people and experiences they are supposed to have to reach their potential – whatever is it – who will?

I can tell you that I treat the kids’ education teams with respect and I expect the same. I can tell you that I expect them to work with me to find ways to reach my hard-to-teach children. No teacher who has the child’s best interest at heart considers over involvement a bad thing. Good teachers welcome us with open minds, hoping to find a nugget of information that will unlock something that is hidden in our kids.

We are the exception to the rule. Very nearly the entire world makes my kids the exception to the rule by placing expectations and standards of “normal” they can’t meet, they are treated differently by family, by friends, by wide groups of people who will never be friends. They are singled out as different and tested and monitored every single day of their lives.

I don’t mind saying we have to do things differently – like we’re the exception to the rule – in order for my kids to have half a chance. I’m so glad to be in a community here that know what this is like.

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Avatar of Susan N. Schriber Orloff, OTR/L

by Susan N. Schriber Orloff, OTR/L

Doodling: bane to teachers but a boost to the brain

January 31, 2011 in Ask the Occupational Therapist, Featured, Insider Insight by Susan N. Schriber Orloff, OTR/L

I went to “teacher school”; even was one for a while. And I have to say unequivocally that there was no information about how a child learns — just what they should learn.

I guess that is why I became an occupational therapist. I needed to know what was going on “inside” not just the outside — as they say, can be deceiving.

And so it is the case of “doodlers”. Admonished for “not paying attention” they are often made to feel belittled and self-conscious about something they really do on “auto-pilot”.

Recent research has shown that doodling actually helps learning!! The child may not look like he or she is paying attention but science says otherwise. In findings published in Applied Cognitive Psychology (2009) test subjects who doodled while listening to recorded messages had a 29% better recall than those who didn’t.

The article goes no to state that, “If someone is doing a boring task, like listening to a dull telephone conversation, they may start to daydream,” study researcher Professor Jackie Andrade, of the School of Psychology at the University of Plymouth, said in a news release issued by the journal’s publisher. “Daydreaming distracts them from the task, resulting in poorer performance. A simple task, like doodling, may be sufficient to stop daydreaming without affecting performance on the main task.”

Various articles on associative memory contend that doodling can boost retention up to 50% for immediate recall. In other articles there is information that doodling actually helps the learner “opt-IN” to discussions by enhancing recall invigorating multiple neural pathways.

Science is giving a new slant on doodlers, fidgeters, and, Heaven forbid – whisperers!! Reprimands from teachers (and even bosses) may soon be a thing of shame to them NOT to the “culprit”. “Pay attention”, “Are you listening, I will not repeat myself” and “Am I bothering you?” and similar phrases are more than inappropriate, demeaning and harsh – they scientifically wrong.

TIME Magazine (Feb. 2009) states a study that defines the benefits of doodling very simply. It prevents daydreaming. Daydreaming tends to trigger the brain to recruit other networks that shift your attention to other things so you cannot focus on the tasks at hand. Doodling does just the opposite; it keeps the motor running so the brain can focus. And historically we have had some rather impressive doodlers: Winston Churchill, John F. Kennedy, Franklin D Roosevelt, John Keats and Bill Gates to name a few.

Other studies support that doodlers tend to be more organized than their non-doodler counterparts. Doodling, it is reported, actually helps clear the mind by relieving stress and aiding in relaxation. So what is the problem? Obviously with the people that doodling seems to upset. (Teachers??) “Paying attention” in class usually means sitting up straight, feet on the floor, not touching anyone else and eyes on your work or the teacher.

Research has a different slant on doodling. Similar to the analysis of dreams, the inspection of doodles can actually create a better understanding of how a mind works. It is the connection between the conscious and unconscious and that is where we learn. Rather than a distraction, doodling can assist in triggering many major routes for us to store information into long-term memory.

Margaret Livingstone, a Harvard University neurophysiologist writes in her book, Vision and Art: the Biology of Seeing that art is a “spin-off” of our brains visual system and this connection cues neurons. Not only does it help us pay attention, it also helps our mind wander into unimagined areas stimulating associative thinking aiding in symbolic expression.

What is known about doodling is that it increases arousal in the brain and forces it to use up just enough energy to STOP it from daydreaming. Doodling seems to stimulate the right side of the brain that mediates visualizations (reading and writing) leaving the left side (information gathering) to relax and absorb information more readily. Both sides together allow the person to synthesize the total concept being presented.

Encouraging doodling may be a route to increasing attention in class. Wouldn’t it be amazing if “Increase doodling while listening” became an IEP goal?

Susan N. Schriber Orloff, OTR/L, is the author of Learning Re-enabled, a guide for parents, teachers and therapists and Write Incredibly Now™ 12 hours to better handwriting. She is the Executive Director of Children’s Special Services, LLC, in Atlanta, GA. She can be reached on the Web at www.childrens-services.com Her WIN™ program is available through YourTherapySource.com.

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Avatar of Admin Dawn

by Admin Dawn

The puzzle of learning disabilities

December 10, 2010 in Insider Insight by Admin Dawn

by Jill Lauren

To be learning disabled – meaning that a person is of average to above average intelligence with a processing deficit that makes learning challenging – is tremendously puzzling. How can one be smart, yet have trouble learning in school? This conundrum has perplexed many, including myself when I began to study various aspects of learning. In fact, I sat in a class about learning disabilities at Northwestern University for almost an entire semester without truly understanding the syndrome until a classmate explained it to me. I remember that moment clearly because I found the paradoxical nature of learning disabilities fascinating and decided to pursue a career as a special education teacher.

Kids want answers, too

When I started teaching, it was no surprise to me when my learning disabled students explained that they were completely confused by why they needed extra academic support; after all, their parents and teachers were often telling them how smart they were. Soon I realized that not only did I need to teach specific skills, but I also needed to educate my students as to what a learning disability actually was. Typically, I found that my students started questioning their academic capabilities around third grade. Prior to that time, coming to the resource room and getting stickers was reason enough to be there! By third grade, kids are more aware of who they are, in relation to their peers, and want answers.

One afternoon, I took a student named Margaret out for ice cream because though she was typically a happy child, she was becoming increasingly concerned and saddened about her academic challenges. When I asked her, “Why do you think school is hard?” she responded, “Because my parents said I have a learning disability.” I was completely surprised that she knew this term. Then I asked, “What’s a learning disability?” Her answer, “I don’t know, my parents didn’t tell me that,” helped me to fully recognize my responsibility to find a way to make the mystery of LD understandable to a third grader. I reached for the one aspect I felt could make the concept real: role models. Back in the 1980s, Tom Cruise, Cher and Bruce Jenner topped the list of success stories of people with learning disabilities. As I explained what I knew of each person, Margaret’s eyes lit up. There were other people out there like her – and they were not only successful, but also famous. My explanation completely legitimized her experience and gave her a sense of hope. She also felt proud to be just like Tom, Cher and Bruce such that she suggested to me, “There should be a book for kids like me about people with learning disabilities.” I promised Margaret I’d find that book. When I couldn’t find it, I decided to write it.

Sharing our stories is a gift to our kids

My first book, Succeeding with LD, was written in 1997, and it was dedicated to Margaret. It contained twenty-two profiles of regular folks, children and adults, with learning disabilities. I was uncomfortable profiling famous people, as I was concerned that most kids would not believe that they could really be like them. Years later, Rick Lavoie confirmed that suspicion when he shared an anecdote about a teenager who told him, “I have pimples and a big nose. What do I have in common with Tom Cruise?” Of course, when public figures share their learning challenges, it is a gift to kids. For the purposes of a book, however, I wanted students to be able to hold a book in their hands that contained at least one person with whom they could truly relate. Succeeding with LD was recently reprinted in a third edition that contains updated profiles of twenty-one of the original stories.

Last year, my publisher asked me to write a new book for younger children with learning disabilities that also profiled success stories. That’s Like Me! contains fifteen new profiles and includes a foreword by Caldecott winner Jerry Pinkney, who is also dyslexic. It is a full-colored picture book and was honored by the New York Branch of the International Dyslexia Association with the Margot Marek Award for the “most outstanding book written for adults or children with dyslexia or related learning disabilities.” I shared this award with the thirty-seven people who so courageously told their stories in both of my books in order to comfort and inspire others. I am completely honored and humbled to have been given the opportunity to bring such honest and heart-warming stories to people with learning disabilities. Many of the people in the books have become dear friends. They join me on panels to discuss various ways that people with LD can pursue their own dreams, like they did.

And where is Margaret these days? After being told by an advisor that she should not go to college, but should instead pursue a career in retail, she obtained a Masters in Social Work from Columbia University after years of grueling study. Margaret also joins me on panels, as she is now a role model herself. We often reflect on the conversation we had when Margaret was in third grade, the impact of which led to the creation of two books and have comforted so many people with learning disabilities.

Jill Lauren has a B.S. and M.A. in Learning Disabilities from Northwestern University. She has been teaching LD students of all ages for over twenty-five years. Known as an expert in the area of reading and writing, Jill has trained teachers around the country to utilize a variety of structured, multi-sensory approaches to the instruction of reading and written language. Jill has also worked with various schools to implement successful reading programs.

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by Children's Healthcare of Atlanta

Discussions in Pediatric End of Life

October 26, 2010 in From the Hospital, Insider Insight by Children's Healthcare of Atlanta

By Maura A. Savage, MSW LCSW OSW-C

Aflac Cancer Center and Blood Disorders Service of Children’s Healthcare of Atlanta

Society is recognizing and celebrating the individual’s right to make healthcare decisions especially as they impact death and dying. Making one’s wishes known allows an individual the opportunity to maintain control, face their own mortality, and hopefully, die with peace and dignity. These powerful goals must be integrated into pediatric care. Just because a child does not have the legal right to make decisions, they do have much to say about living their life, what they want, and ultimately, what it is like to be dying. No child should die isolated or in pain, physically or psychically, because care providers and parents are unwilling or unable to talk about the death process and wishes for quality of life.

One of the biggest clinical challenges is how to help the child have a voice while respecting parental autonomy. A parent’s natural instinct is to protect their child from harmful and scary things. How frightening that after battling a disease so hard, there is no protection from death. Parents can feel that by talking about death, they are talking away hope or somehow, by speaking of it, causing the death of their child. Research and practice shows us that children, even ones who are quite young, have a keen understanding of what is going on with their body. As much as parents try to protect their children, children actually end up protecting their parents.

Talking to kids about death

It is imperative that healthcare professionals use open and appropriate language around death and dying. This open and honest dialogue must first come from the physician. If healthcare providers cannot use the words “death”, “dying” or “die”, how can we expect parents to begin this conversation with their child? We must model that this is an ok subject to talk about. One lesson I have learned over the years is that there is not a family who has a critically ill child that has not thought about the possibility of their child’s premature death. The healthcare provider is not opening a new topic, only giving voice to something already felt.

On the other hand, families cannot continuously stay in this conversation. It is not crazy for a family to talk about impending death and in the next breath, talk about remission. As facilitators of this conversation, we must always respect hope. Do not confuse hope with denial.

Giving parents the opportunity to get more comfortable with the discussion of the potential death will allow them to begin talking with their child about their life and their wishes. While professional staff can and should talk to children, they must not do this without the knowledge and permission of the parents. Information given to children should reflect their developmental level. It is interesting to note that more often than not, conversations about death are initiated by the child. I think of a six-year-old girl with relapsed leukemia. It was becoming clear that her disease no longer responded to medical treatment. Her parents were reluctant to talk with her. It was the beginning of November. This child drew a picture of a table in the sky. On the table was Thanksgiving dinner and at the table sat the child and Jesus. It became very clear that she was trying to let her mother know that her Thanksgiving dinner would be in heaven. The mother was finally able to discuss with the medical team her child going home on hospice and discussing a peaceful death.

Giving children control over their medical wishes

Facilitating the conversation between parent and child can allow for even a young child to have some control over their situation. After working with a family and helping the parents come to terms with the impending loss of their child, the parents were able to take the next step and talk with their seven-year-old daughter. Using books and reflecting their religious faith, this family was able to talk to their daughter about dying and heaven and what that might be like. This child understood very quickly and began to make some arrangements. She wanted to make sure that her younger sister got her money. However, she told her sister she could only spend it in a “Hello Kitty” store. To drive the point home, she told her sister she “better do it, because I will be watching from heaven!”

As children get older, they can get more specific about their medical wishes. Children who have battled illness for a long time have a very advanced knowledge of medical treatment and care. Recently, a ten-year-old patient stated to his care team that he “did not want to be alone in the ICU.” Although he did not use the word “die” it was clear in discussions with him that that was what he was afraid of. While not old enough to execute a legal advanced directive, it is impossible to ignore a patient’s strong wish. Unfortunately, the parents could not “hear” this request from their son, and he did die in the ICU. The family was not present. While we could not honor his request about being in the ICU, we, as members of his care team, stayed with him as he was dying, assuring him he was not alone.

Giving space for a child old enough to understand medical treatment and impact to discuss their wishes with their family generally can provide clarity and comfort to all involved. Parents as surrogate decision-makers agonize over choices. One family of a five-year-old boy diagnosed with Ewing’s Sarcoma struggled with the decision to amputate his leg. The parents did research and kept a journal of how they came to the treatment decision so if their son asked why later in life he had no leg they could explain how they came to that decision. We rehearsed the conversation together, and they then went home to tell him. In the morning, the mother shared that while it was so very hard to tell him, she was so glad she did. The parents told their son he would loose his leg. The little boy thought about it and told his parents, “Its ok, its not my leg that makes me Stephen, it is my heart.” What a gift.

One does not recover from a death of a child. One learns ways to go on, to live with the void. This loss can be eased with the knowledge that while death would be inevitable that there was peace in the passing. Having the opportunity to talk about the experience, no matter how painful initially, gives some comfort. Knowing that all decisions made were the best ones that could be made at the time based on the families values and needs helps the healing process. I think of Ashley, a beautiful dancer, dying of a brain tumor. Just before she slipped into a coma from which she never woke, turned to her mother and said “thank you for taking such good care of me.” What a motivation to keep families talking.

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by Dr. Tiffany Showalter

What frustrates me?

September 8, 2010 in Ask the Occupational Therapist, Insider Insight by Dr. Tiffany Showalter

As someone who works with children with special needs on a daily basis, I can only imagine how difficult it is to have a child or children at home with these needs. Doing everything you can for your child and keeping sanity in your house must be extremely difficult, resulting in many frustrations of your own. What I want to discuss are my frustrations from the other side, in an attempt to help you as the parent understand where we are coming from.Frustration

1. I enjoy frequent communication with you about your child and enjoy even more trying to help you problem solve an issue your child might be having at home or at school. What frustrates me is when I put forth great effort to help you with suggestions and activities for you to do at home and find out later that you haven’t even tried any of them and are still asking for help.

2. What frustrates me is when a parent expects me to fix their child. You have a wonderful child with both strengths and weaknesses. My role as your child’s therapist is to help your child participate and be successful with completing certain skills that they are having difficulty doing within his/her abilities. It is like the saying; “there is more than one way to get a job done”. In many cases, my job is to find that other way.

3. I know parents are often not experts when it comes to child development and developmental milestones. I can help you there and provide tables. What frustrates me is when you are expecting skills beyond your child’s developmental level. A simple web search can yield what is appropriate or ask me for that information…I am happy to provide you with it.

4. As a parent of one child with another one on the way, I am sure there will be many days when I compare my girls. What frustrates me is when you compare the skills of one child to the next. Even if your children were the same age, had the same abilities and disabilities, and participated in the same programs, there are still countless factors that contribute to your child’s development. It is unfair to compare them.

5. I haven’t had to deal with developmental pediatricians or other medical personnel explaining my child’s diagnosis to me, but what frustrates me is when I have to explain something essential to your child’s prognosis with you when you should have been made aware long before ever meeting me. For example, I have had to explain tone at least 4 times this school year. These were all situations where the children were receiving ongoing medical interventions to address such tone. The parents asked me what we could do to “fix” the tone. I am writing an article on tone itself but in a nut shell here it is. Tone is neurological and can only be permanently “fixed” with surgery or medicines. Various techniques including tendon tapping, casting, icing, vibration, and gentle rocking to mention a few can only temporarily affect tone. More appropriately would be to modify the task that the tone is impacting to increase your child’s success. In two of these four conversations, the parent was brought to tears in learning this information. I think knowledge is power and am happy to provide you with such, but how frustrating that the doctor did not explain this to you. I would cry too.

Just letting off a little steam! I really do love my job!

Disclaimer: I hope you enjoyed reading this article. Please remember you are reading this information of your own free will and are taking the information at your own risk. The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent. This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

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by dianaglick

To Sign the IEP or Not to Sign — this is the question!

August 20, 2010 in Ask the Special Ed Lawyer, Insider Insight by dianaglick

Whew! You made it through the IEP meeting and are still standing. Now that the meeting is over, you are being asked to sign the IEP so the District may implement the proposed services, accommodations and goals. Should you sign or not? And, why does it matter?

Your Rights

The District must obtain your consent before providing the services indicated in the IEP. However, parents are under no obligation to sign the IEP, particularly if they disagree with its terms. Parents may sign, refuse to sign or authorize certain services without agreeing that the IEP provides your child a free appropriate public education.

The Ideal Scenario

Student raising her handIn the ideal IEP meeting, each of the following occurs:

* The designation makes sense and is back up by appropriate assessments
* Each of the professionals has given a report and there are offers of services that address all of your child’s areas of need
* There are measurable, understandable goals for each of your child’s areas of need
* If necessary, there are modifications and accommodations to the curriculum (homework, class work, testing) that will allow your child access
* The District has presented you with a written document reflecting all of these items, plus a narrative that contains the main points of discussion during the meeting.

When this kind of a meeting has occurred and you feel good about the outcome, by all means, give your consent. It is when one or more of these items is missing or has gone awry that you should consider not signing and instead developing a strategy to address the unresolved issues with the IEP team.

Your Options

Option 1: Sign the IEP. See you next year for the annual review!

Option 2: Authorize the implementation of goals and services, but do not agree that the IEP provides a free appropriate public education.

This is a very helpful middle option that can serve to move the process forward and extend protections to parents and student without compromising any potential legal claims in the future. It also serves to keep the conversation alive if there are items pending resolution. This response can be made with a simple sentence written on the signature page, or can be written up in a “Parents’ Addendum to the IEP,” which lays out your concerns in greater detail while still providing authorization to implement what the District has proposed.

Option 3: Do not sign at all.

Some parents opt to take the IEP home and review it carefully before signing it. This is a great idea if you would like some time to digest the information presented at the meeting and make sure you understand everything before signing. If you are satisfied with the document, make sure to sign and get it back to the District as soon as possible.

In other situations, parents fully disagree with some aspect of the IEP and do not want to provide their consent or authorization. If you find yourself in this situation, you will want to consider your next steps. Would you like to have another meeting to discuss specific aspects of your child’s program? Would you like to see revisions to the goals, more goals or perhaps fewer goals? Are there assessments necessary to determine what your child needs? Let the District know, preferably in writing, what you would like to see happen next and emphasize the importance of collaboration in getting an appropriate document with a plan to address your child’s needs.

Some Pitfalls of Not Signing

While not signing your child’s IEP is a right you have and one that can be exercised in the face of an inappropriate plan, there are some potential pitfalls you’ll want to be aware of as you are making your decision.

First, if this is an initial IEP finding your child eligible for special education, refusing to sign or authorize implementation means that your child is not yet considered eligible for special education. This may be important if your child is experiencing significant behavioral difficulties. As I will describe in greater detail when we talk about discipline, the IDEA provides special protections for children with IEPs when they have committed disciplinary infractions. If your child is racking up multiple suspensions, the safest course of action is to authorize the implementation of the IEP and agree in writing that your child is eligible while you continue to hammer out the details of the plan.

Second, if you decline to provide consent or authorization (no signature at all), the District is not legally able or required to implement the services offered in the IEP. For example, if the District is offering speech therapy for 30 minutes per week and you believe your child should get 60 minutes per week, it might be better to authorize the District’s offer of service while you continue to negotiate, instead of rejecting all services by not signing. If you refuse to agree to your child’s annual IEP, the District is required to provide the placement and services offered in the last IEP that you signed and that was implemented. If this is an initial IEP, there is fallback IEP to implement.

Finally, refusing to sign an IEP can create an atmosphere of tension among the members of the IEP team. The District wants and needs your signature in order to move forward and some of the team members may feel insulted or offended that you have refused to sign. This should not deter you from advocating for your child, but it’s good to understand how your actions could be perceived by the District. The most important thing you can do once you decide not to sign your child’s IEP is to keep the lines of communication open with the District and indicate clearly what you would like to see happen to resolve the conflict.

Disclaimer:

This column reflects the views of Diana B. Glick in her individual capacity. It does not necessarily represent the views of her law firm or her clients, and is not sponsored or endorsed by them. The purpose of this column is to assist in dissemination of information about federal special education law, but no representation is made about the accuracy of the information. The information contained in this column is provided only as general information for education purposes, and topics may or may not be updated subsequent to their initial posting.

By using this column you understand that this information is not provided in the course of an attorney-client relationship and is not intended to constitute legal advice. This blog site should not be used as a substitute for competent legal advice from a licensed attorney in your state. This column is not intended to be advertising and Diana B. Glick does not seek to represent anyone desiring representation based upon viewing this blog site in a state where this blog site fails to comply with all laws and ethical rules of that state.

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by Julia Roberts

Betty: Learning to be her own advocate

July 25, 2010 in Featured, Future Glimpse by Julia Roberts

While we are preparing for the BlogHer Special Need Mini-Con, we are going to rerun several of our articles that have run over the past 15 months. We’re hear still, so let us know if you need anything.

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It is before my son is on dialysis. In fact, it’s before I can fathom that my son will ever be on dialysis. I am sitting in a conference room and listening to a teenager talk about her experience with ARPKD — the same disease that my kids have. She talks about the symptoms and how they make her feel. I listen intently while she explains that in school, she’ll raise her hand and by the time it’s her turn to answer the thought she was going to share is gone. I replayed that conversation over the years as I tried to understand my kids’ kidney failure and the impact on their learning.

Thanks to Betty I understood more. When I asked her to share her story so others could benefit from her experienced she didn’t hesitate. Here’s her story and how she learned to be her own advocate.

My parents got the diagnosis at my birth. I was born without amniotic fluid, with a pneumothorax. As soon as I was born they took me away from my mom and later looked up my symptoms in a medical book and told her that I had ARPKD and I would die within 2 weeks. I’m twenty now and I had my kidney/liver transplant December 12th 2009.

There have been different things throughout my life that I would say have been especially hard. I didn’t feel too different most of the time before I was 13. A lot of the time I looked different than other people because I had an enlarged abdomen. Then when I got sicker it was very hard to not be able to go to school and hang out with friends and go to parties and graduate high school and go to college. I just wanted to do regular teenage things. It was made even harder by people who were jealous that I didn’t come to school sometimes and said I was lucky. They didn’t understand that it wasn’t because I didn’t want to stay home; I just couldn’t make it through the day.

Becoming her own advocate

I’m not sure what my first memory of advocating for myself is but I think I started out by telling nurses things like where or how to take my blood or give me an IV. Little things like that just slowly turned into bigger things — things that would affect my treatment like when I was misdiagnosed. I did research and tried to explain to my doctor what I thought and when he didn’t listen to me I went to a specialist in ARPKD to see if I was right. She said I was and sent my nephrologist a note.

A few times if I had not advocated for myself I would have been seriously injured or could have died.

I think I started advocating for myself because I saw my mom do it so often. She wasn’t like one of the parents that just sits there and listens to the doctors without ever trying to learn or question them; she always tried to do what was best for me no matter what. She also always supported me. It was easy to advocate for myself when I always had someone who would believe me and advocate for what I wanted when people weren’t listening.

Making her way in school

For school, I tried as hard as I could for as long as I could. For all three years I was in high school I had trouble going a full day. In the second semester of my third year the biomedical academy kicked me out for having an incomplete in AP US History because I was absent. The school had been trying to make me go to home bound until I turned 17 . By then so I felt no use pushing myself too much at school.

I finished out the year in home bound but decided that even it was too hard at that point, especially because I still had to go up to school to cram physics and take all the quizzes and exam. After that I decided I would just get my GED. My parents were completely supportive of my decision. It seemed like a waste of time to go back to high school after all my friends had graduated since I had such a low GPA from all of the incompletes in my classes. So one of the counselors from my high school and I decided that I was going to get my GED and then go to college.

Invisible disability

Nobody really treated me like I was sick because most people couldn’t really see that I was. They treated me differently because I couldn’t come to school all the time and so I wasn’t reliable for things like group projects. Most of them also didn’t get close to me because they didn’t see me every day like all their other peers. The ones that knew I was sick were my friends. Those few real friends treated me just the same.

My recovery seems never ending to me. My scars are completely healed now and my encephalopathy is getting better every day. My balance came back just a few days after my transplant but my memory, concentration, reading, etc. are getting better still. I am still trying to get my strength and stamina back, but there is a huge difference in what I can do now and what I could do before transplant.

The hardest things in my recovery have been medicine related. I gained a bunch of weight and acne from the Prednisone and I had to take a lot more Prednisone than the average transplant patient since my liver rejected twice a month after my transplant from not having the brand name of another immunosupressant.

“I plan to be a doctor”

My future plans are to get as healthy as I can. I want to get my driver’s licence and GED and then go on to college. I plan to be a doctor. I want be a nephrologist and a hepatologist that specializes in ARPKD. I really think that I could identify with and help other people with my disease and educate other doctors further on it. I would really just like to live my life to the fullest now and enjoy it since I have gotten it now.

For both parents and teens I would really say that educating yourself on your kid’s or your own medical problems is one of the best things you can do. It is easier — and people take you much more seriously — when you have an idea of what your talking about.

You need to think about what the best thing is in the long run after you educate yourself. Think about the past experiences that you have had and if anything like that is happening or applies in the current situation.

I’m not sure what my parents did differently from other peoples parents, but some of the people with my disease that I know just wanted their medical problems to go away so badly that they ignored them and that lead to greater problems. I’m not sure what else I can say for the parents to do besides just supporting their kids. Everyone is different and some people just have an easier time with medical things and advocating.

Advice to other teens

For teens having challenges, my biggest challenge besides just being seriously ill in general was getting depressed from constantly not being able to do things and feeling bad and feeling like it was all never ending. What really helped me with all that was surrounding myself with people and activities. I would go to book clubs and women’s groups and youth groups and girl scouts and games nights with people.

If my friends were doing things I couldn’t do, I would hang out with adults instead. Most adults were able to treat me normally and I was able to relax and have fun that I could handle. It all really helped a lot. Reading books about similar situations, talking to people with my illness or other illnesses and their families, talking to people who had similar experiences and were now doing better, were all helpful things I tried to do.

-Betty Foreman (ARPKD/CHF, kidney/liver transplant Dec ’09)

Do you have any thoughts to share with Betty? Comment here and we will forward them on to her!

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Avatar of Julia Roberts

by Julia Roberts

Carrying the Pain of Judgment

June 9, 2010 in From Julia by Julia Roberts

Gage at church choirWhen it first started

When Gage was two he was still crawling and not walking. He’d just mastered pulling up and standing at the edge of a piece of furniture and we were thrilled for the progress he was making in physical therapy. He was thriving in speech and occupational therapy as well and I was a proud mom.

I find it unbelievable, even today, how quickly that pride went away when a friend of a friend asked how old he was and when I told her she appeared to be in shock. Disgust even, because my two year old had the physicality and behaviors of a less than 1 year old. As luck would have it, my best friend happened to be with me and she was able to talk me off the ledge. I was able to talk about the experience of judgment from others early on in my relationship with my own special needs mom self.

That one experience sent me into an internal dialogue to figure out how I wanted to deal with people who were judgmental about my children and their development, or lack their of, as the case was at the time. Little did I know that Gage’s behavior would later become oppositional, abusive, sad and defensive. I didn’t know when he was two that he’d eventually talk with others about killing himself and me, I didn’t know that he would be rude and disrespectful most of the time. I didn’t know that parents I considered friendly, even supportive, would shun Gage and our family. I didn’t know what I didn’t know, but luckily that early experience helped me deal with the judgment that did come with great force and frequency in the years past age two.

How did (do) I deal with public judgment?

I cried a lot. I cried about the pain of watching my children judged for disabilities they could not help. I cried about who judged us – close family and friends – because they should be the most understanding as they have intimate details, yet they still think we could do better. I’ve talked directly with people who’ve made comments to me or around me. I’m still not over a quite painful experience where I told a friend, “It is okay, we know a lot of people don’t like him and don’t want to be around him.”* Needless to say we no longer have a personal relationship although she did send a note some weeks later apologizing. I blog about it for therapy and I make my husband and close friends suffer through hours of analyzing the different situations. I surround myself and the kids with loving and compassionate people who are willing to accept my kids the way they are and who encourage their children to do the same. Because we go out in public, I’ve truly developed a thick skin.

A thick skin will only take you so far.

I’ve planned for years how to cope. I have conversations in my head ready to talk with someone about with many scenarios; either discussing a deficit or a behavior. I’m not afraid to discuss any situation with people no matter how unpleasant. I understand my kids are unique even in their uniqueness and that Gage especially marches to his own music and doesn’t care that others don’t hear it. Mostly, it’s one of the traits I think will help him in the future, but many people do not find it enduring, this much I know.

Do I like it dealing with it head on? No. But it’s as necessary for me as is talking about failing kidneys or meds that don’t work so I lump it all into the non-glamorous facets of special needs parenting. It’s not for sissies.

What about you?

We have a private group, room to to talk about the hard stuff, like this. Come by Room for Rants and let’s talk about it. How do you deal with judgment? (Note, you’ll need to be registered and ask to be approved for the group before you can join us. This is to keep search engines out of the group and make sure only community members can read the archives.)

*Incidentally this happened at the pool…and since it is Sun Safety Week, that’s my tie-in.

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