Parents Are a Great Asset to the IEP Team
Definition: The term "IEP" refers to Individualized Education Program, and is most often used in conjunction with special services or for providing instructional services for a child with special needs. It is an ongoing planning-tool that must be reviewed and revised on a regular basis.
Who Develops the IEP?
As early as possible after it has been determined that your child is eligible for special educational services, an IEP must be drawn up. The school is responsible to develop the document starting by gathering all the information.
Then the Individual Education Plan should be refined jointly by the child's teacher, staff involved with the child's program (i.e., Special Education Teacher, Speech-Language Pathologist) and the parent/guardian.
Communication from the beginning among all the IEP team members and the sharing of information and ideas will result in a practical, workable IEP for the benefit of all.
The implementation of an IEP should not have two warring sides. All team members are there to smooth the educational journey of YOUR CHILD. I have been on both sides of the table, believe you me, neither is easy. If anything, the whole IEP team is tied by THE SYSTEM and THE BUDGET FOR SPECIAL NEEDS. It is not parents vs. school.
I have gone to bat for special needs children in my class and had my fingers rapped by higher up. Teachers have much less clout to fix THE SYSTEM than parents and Special Needs support groups. Advocate for your child; do not alienate those who are on the same team. Find the root causes of problems and try to influence changes by going diplomatically through the right channels.
Why Have An IEP?
Parents and professionals from the school, as well as the child if he/she is old enough, must schedule an initial meeting…the first of many I am afraid to say. In an IEP meeting, the decisions regarding special education and related services are made and the individualized educational plan is discussed. The IEP will outline the services your child needs to meet his learning needs. Information about your child’s present educational performance is stated and the specific measurable goals he/she is expected to accomplish within the year are listed. Also short term goals are included and evaluated throughout the year on the way to making progress towards his annual goals.
What is the Role of the Parents?
Parents have a great deal of knowledge and experience regarding their child. Parents are the experts in their own right. They provide historical information and the big picture from year to year. They know what works and does not work with their child and can be a great asset to the IEP team.
The goals and specific expectations, the accommodations and program modifications required must be discussed while fine-tuning the IEP. That first meeting of the whole team will, therefore, not be so daunting to the parents. Nothing should come out as a surprise. The focus of the meeting should be on making the IEP work.
Tip For Parents ~ Keep Records of EVERYTHING!
From the beginning, parents must keep good records in a large, sturdy folder which can be brought to meetings and appointments. Start compiling a list of all the people you must deal with and include all their contact information. An address book for this purpose works well. Keep a journal to write down, in chronological order, all developments. Include all tests results, appointments and discussions about your child. After a phone call, immediately write down the W’s: who, when, why and what. A good policy is to ask for every important decision to be written and signed. Make copies of important papers to always have one to put in your folder. This folder is your bible, it will quickly be worth its weight in gold!
Parents will have to sign consent forms needed for further tests or for the school to receive test results from professionals. Share any relevant reports or assessments about your child. Give your contact information so you are easy to reach to hasten the process.
*Who Makes Up the IEP Team?
*Parents and child if he/she is old enough
*Previous classroom teacher if a school term is starting
*Regular classroom teacher
*Special education teacher
* School system representative: ( usually our principal and or the Special education coordinator attended)
*Professional who can interpret the evaluation results that led to your child’s eligibility for an IEP
*Professional who will provide services as part of the IEP
*Any other person either party deems has special expertise about the child
It is important that all parties be present for the initial meeting as well as the follow-up ones. I remember when I was teaching, how difficult it was to set a time when all could be present. It takes time to arrange every aspect of an IEP, therefore start months before you want it in place.
All parties are there for the benefit of your child and want to work in a collaborative way to map out your child’s educational plan. It might be overwhelming for the parents but they should know the whole team wants this IEP to be well drawn up and workable as much as the parents.
It is important that parents continue to be informed and involved in their child's education leading up to the IEP and for all the years after.
Please add other suggestions for parents whose child is in an IEP.
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Snapshot....Independent Education Evaluation (IEE)
Independent Education Evaluation (IEE)! Why had I not heard about this until a desperate moment when I called a neuropsychologist for urgent advice about my son's down-spiraling behavior in school? Of course, I'm sure it's noted in the packet of IEP rules and reg.'s that we get at every IEP meeting, but it's not something I go through every year or each time I have an issue with services. As a teacher myself, and having worked in the special education field, I keep mistakenly thinking that I can navigate my way through this process with little assistance.
Anyway, my 2nd grader, L., with Asperger's had started on one of his bad cycles, as I call them. At home, but most horrifically at school, he was increasingly agitated, rigid in thought and behavior, seemingly defiant, and the list goes on. He is always like that but it was exacerbated. At school, he was with an experienced teacher, who at the beginning of the year knew little about Asperger's, but took it upon herself to learn about it. Though L. can be frustrating and trying, she truly appreciated him and was genuinely interested in his way of thinking and perceiving things. So, when she started to express a concern over his behaviors, beyond the typical daily issues, I got scared. She could see how anxious and agitated he was becoming and out of the best interest for him, would leave her class with the school secretary to take him outside and walk/run around the school.
So, one day, Teacher pulls me aside when I stop at school to give me the most recent update. For the life of me, I honestly can't remember what it was she said to me now. I've learned that I have to let go of all the negative once it's dealt with or it leads to an unhappy life. So, whatever it was spurred me to call the number of a neuropsych. L. sees a neurologist, but I was feeling like I needed more guidance about how to deal with his behaviors and what to tell the school.
Within 5 minutes, Neuropsych noted that though L.'s classroom teacher seemed phenomenal, there seemed to be little to no support for staff and child. True! She thought that Luke's issues sounded complicated and recommended an IEE. This would allow someone outside the school district to evaluate L. and make recommendations based solely on need and not on what the school system was capable of providing. Sounded good to me, but how much was this going to cost? Well, the school system COULD pay for it if warranted. Time to write a letter. Note: Put everything in writing.
Here's what happened:
1)Sent email to Special Ed. Director of the school district requesting an IEE and that the school district pay for it because "current evaluation is incomplete and/or lacking in that the effects of L.'s sensory issues and Asperger's like behaviors have not been addressed by a professional/expert in the field that can also address the pervasive educational implications." (sent on Monday night).
2)By Tuesday morning at 9, I had received an email from the school principal asking if we'd like to have a 1:1 for L. What?!!! I had mentioned this before to the team; predicting that the only solution would be to provide another adult in the classroom. Now, that a letter was written asking for an outside source to evaluate the situation, it was being offered.
3)My understanding is that after I wrote the letter requesting for the IEE, they had 10 days to respond. They either had to respond with a YES or a NO and it would go to due process.
4)They quickly responded with a yes.
5)So out of 1 email we got a 1:1 and an IEE payed for.
By the way, the IEE turned out to be very helpful and revealing to us, the parents, and for the school.
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Interview and Giveaway with Ellen Notbohm, autism mom and author of "1001 Great Ideas for Teaching and Raising Chldren with Autism or Aspeger's"
During the first week of school last year, Nick’s Kindergarten teacher walked up to me, and almost under her breath like we were about to share a secret she said, “Do you know of any good books on how to teach a child with Autism?”
And sheepishly I said, “No.” Quickly followed by, “Not off the top of my head, but let me look into it.”
I was disappointed that I didn’t have a go-to book to recommend. I should have immediately known what to suggest to her – something that would be succinct, easy to understand, quick to read, effortless to implement and even more important – well organized so that she could go back week after week and year after year to look up what she needed.
Well, it took me all school year, but I finally found my go-to book: 1001 Great Ideas for Teaching & Raising Children with Autism or Aspergers by Ellen Notbohm and Veronica Zysk – Not to mention a foreword by Temple Grandin, PhD who says the book is “Genuine, commonsense advice that all parents and educators can quickly and easily use!”
And who argues with Temple Grandin? Surely not me.
I asked Ellen Notbohm, who has also authored 10 Things Every Child with Autism Wishes You Knew, 10 Things Your Student With Autism Wishes You Knew and The Autism Trail Guide: Postcards from the Road Less Traveled, if she was available for an interview, and I was thrilled to have her say yes. I mean, really, this is a woman who has 1800 great ideas on how to help my kids – this rates right up there with a new handbag and a kid-free vacation for me!
Now, normally I’d say you should take notes, but with 1800 ideas jam packed into this book, Ellen can’t possibly rattle them all off here (no, really, she can’t). But, good news: Future Horizons has offered to give away a copy of her book! Look for details on how to win at the bottom of this post – or if you aren’t that patient (like me), hop on over to FutureHorizons.com and buy your own copy now.
Either way, you are in for a treat!
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Hartley: Welcome to HLW3B Ellen! I am so pleased to have you here today! Aside from being an award winning author and successful journalist, you are also the mother of sons with Autism and ADHD. Will you tell us a little about you and your family?
Ellen: And I am so pleased to have the opportunity to connect with HLW3B readers – thank you. My family lives in Oregon where my husband and I met while performing in an opera. My older son is a sports whiz who teaches and coaches children at a local community center, and my younger son is an aspiring filmmaker entering his senior year of high school. He’s interning this summer at the film school he’s attended in past years. Beyond my autism books, I’ve authored numerous family history articles for Ancestry magazine, am at work on a historical novel and have belonged to the same knitting circle for 22 years. I also enjoy baseball, chopping wood and griping about gardening.
Hartley: I have to start by saying that I was immediately drawn into your book 1001 Great Ideas because it is so simple to read and easy to apply. As the mother to three boys, two with challenges (but all *challenging*), it is easy for me to see how many of the ideas can stem from your own parenting experience, so aside from those experiences as a mother, where else did you get your inspiration?
Ellen: The book is set up to be the kind of reference a parent or teacher can go to for quick ideas on a specific issue, without having to read cover to cover. As my sons moved through school and through their developmental phases, I could see that that was the kind of help most frequently needed by both parents and teachers. Many of my sons’ teachers wanted to do everything within their power to help but didn’t have working knowledge or training in how the brain with autism learns – cognitively and socially. By accumulating the experiences of many teachers and parents in one book, everyone benefits from an aggregate body of knowledge.
Hartley: My favorite chapter is the one on Sensory (no shock there, right?). And I’d like to state for the record, I think “Twelve Signs of Sensory Overload” should be printed on posters and hung on classroom walls everywhere. Really. But for those who haven’t read the book yet, what other fresh sensory ideas does the book offer?
Ellen: Our overarching approach to sensory “therapy” is that we may be guided by an occupational therapist – and that is extremely important – but 99% of sensory activities are going to happen in the home, on an everyday, ongoing basis. So it’s important to realize that opportunities for sensory activities are all around us, all the time, and that sensory activities can and should be fun. Fun is the medium through which children learn best. Fun sensory activities don’t require expensive equipment or toy purchases (although the right ones can be good investments), but can be found in ordinary items such as boxes, balloons, bubbles, kitchen gadgets, straws, water, sand and sand alternatives, homemade clay, etc. The book offers hundreds of these kinds of ideas. Not only are they good for our kids but c’mon, admit it – it’s fun for us gr’ups to have an excuse to indulge our inner child. I loved playing with mud, shaving cream, rocks and other “stuff” with my kids.
Hartley: I also like the chapter on behavior – because that is the primary challenge at my house – so the advice is greatly appreciated! I was intrigued by the section “Don’t ask why”, honestly because I always assume if I could figure out why, then I could stop the behavior from happening. But, that is never the case. For my readers who haven’t got their hands on a copy of your book yet, will you give us a brief explanation of why you don’t ask why?
Ellen: Because your child may not be able to understand or articulate why. Asking a child to identify motivation for an act assumes a level of self-awareness and vocabulary that may be far beyond his or her current stage of development. Think about it – many adults are not capable of identifying reasons for their behavior, accepting responsibility for their behavior and taking steps to change behavior (hence the same old New Year’s resolutions, year after weary year). It’s far more constructive to first of all, ensure that the child understands what s/he did (don’t assume), involve him or her in a discussion (not lecture) about how to avoid the behavior in the future, and agree on consequences should it happen again.
Hartley: Your chapter about the relationship between parents and teachers is terrific as well – I believe that being able to see our children through the eyes of a teacher – and they through our eyes – can benefit both sides and help maintain a healthy team relationship. Give my parent readers your best tip on how to start fresh with their child’s new teacher this fall – and my teacher readers how to best get to know their new students with autism this coming year.
Ellen: The answer lies in your question – “start fresh.” Parent and teacher must give each other the courtesy of a clean slate. Parents, don’t overlay previous experiences, bad or good, on this new teacher. Teachers, you may have had previous experiences with children with autism, but this one is unique. Don’t overlay expectations for behavior problems , genius or social shortcomings on this child. A positive, team attitude and daily sharing of information between home and school is the foundation of setting the child up for success.
Hartley: For new parents, who are just starting out on the IEP/Special Education path, what is your best advice for laying the foundation during that first meeting as a means to establish a positive ongoing relationship with their child’s school?
Ellen: Approach your IEP/Special Ed team as just that – a partnership, not an adversarial face off. Keep in mind the definition of a team: all members working together toward a common goal. The goal in this team effort is the child’s success. It requires each member fulfilling their role, free sharing of information by all team members, leaving egos and personality differences at the door, respecting and working through the differences of opinion that will inevitably occur. In 1001 Great Ideas, we answer this question at length in a section called “Creating Positive Partnerships.” I also address it in Chapters 1 and 2 of Ten Things Your Student with Autism Wishes You Knew (“Learning is Circular” and “We are a Team).
Hartley: There are obviously too many Great Ideas in your book to go through them all – but which one stands out the most to you? Why?
Ellen: The hands-on, how-to tips and tactics in the book are action-oriented. But Veronica and I believe that attitude precedes and underlies action. My favorite Great Idea is the parable “A Word About ‘Normal’” at the end of Chapter 5 (“Thinking Social, Being Social”). In it, a middle school speech therapist advises a mom that, by looking around the school, she will see many kinds of “normal” – nerdy normal, artsy normal, techie normal, sporty normal, etc. The right social circle is the one in which a child can feel safe. Respecting a child’s individual social self as the right one for him liberates us from defining “normal” in any single way. [This is also available on Ellen's Facebook page]
Hartley: Thank you Ellen for taking the time to talk with me here today! I am very excited to share your book with my sons’ teachers (yes, all of them!) this coming fall – especially the Kindergarten teacher who asked me for a book – she gets the first copy! Truly, you are providing parents like me a fantastic resource that will help our children be more successful at home and in the classroom, and I personally thank you for that.
Ellen: It’s my honor to be part of the team – thank you!
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You can enter to win a copy of Ellen's book here, www.hartleysboys.com
Thanks,
Hartley
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Parenting a High Schooler on the Spectrum: Interview and Giveaway with author and Autism Mom Claire LaZebnik
Since I don’t have any experience whatsoever with parenting teenagers, let alone teenagers on the spectrum, I had to find an expert that had survived the teenage years and lived to talk about it for my back to school series.
And I did just that. Meet Claire LaZebnik.
Claire co-authored the book, Growing Up on the Spectrum, with Dr. Lynn Kern Koegel and is proud to be an Autism Mom -- and is also giving away a copy of her book (Totally radical, dude...nevermind, that was cool when *I* was a teenager...not so much now....). So, who better to ask for tips to help parents that are just entering this new realm of life with their child than a woman who had done just that?
Since teenagers notably have a short attention span, let’s get right to the answers, shall we?
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Hartley: Hi Claire! Welcome to HLW3B – so happy to have you here! Tell me a little about yourself, your family and your son?
Claire: Thanks for inviting me. Let’s see . . . I’m the mother of four kids: the oldest has autism, the second oldest has Celiac Disease, the third (and only girl) has Addison’s and Hashimoto’s Disease and the youngest has so far dodged any diagnoses, but we’ll see what the future brings. In spite of all that, we’re a happy, silly, busy family and everyone’s doing great. My husband and I are both writers. He’s a co-executive producer on “The Simpsons” and I write books—mostly novels (my fourth one, IF YOU LIVED HERE, YOU’D BE HOME NOW comes out this September) but I’ve co-written two non-fiction books about autism with Dr. Lynn Kern Koegel who, with her husband, Dr. Robert Koegel, runs the Koegel Autism Clinic at the University of California, Santa Barbara. I originally met Lynn to consult with her about our oldest son, who was five or six at the time. I was blown away by the program she and her husband had developed: it all stems out of ABA (applied behavioral analysis) but they had spent time reviewing tapes of old clients to see how they’d progressed over the last decade or so, and used that knowledge to pinpoint certain “pivotal behaviors”—behaviors which, when appropriately addressed and improved, bring about even greater widespread improvement. Everything she suggested we do with our son made a huge difference. I’m happy to say that this kid—who was completely non-verbal at three and still mostly echolalic at six—is heading off to college this fall. It’s been a long journey.
One important thing I should stress right from the beginning here is that I’m a mom, not an expert. My job as co-author of our two books was to provide the parent’s perspective and to make the prose as user-friendly as possible. Of course, I’ve picked up some ideas from Dr. Koegel along the way, but I’m NOT a clinician!
If you want more specific, expert-reviewed advice, please check out our two collaborations, OVERCOMING AUTISM (aimed at parents of kids who’ve just been diagnosed up through elementary school) and GROWING UP ON THE SPECTRUM (for parents of kids in middle school through young adulthood). The latter also contains some first-person essays by my son, who talks about his own experiences of . . . well, growing up on the spectrum.
Finally, please know that while I’m very good at giving advice, I am by no means a perfect mother. A lot of good intentions fall by the wayside when you’re dealing with four kids with different needs, a house that’s always messy, several pets, and a writing career. I often don’t live up to the goals I’m describing. We’ve done a lot for our son and we’re thrilled with the adult he’s becoming, but I can also look back and wish we’d done more.
Hartley: As parents, we always think we could do more -- but to me, that is what defines us as being great! For the many parents out there who are anticipating the start of school already, what should they start doing now to help prepare their child on the spectrum for high school?
Claire: Any kind of priming—social, academic, spatial—is going to be useful. You should probably spend the most time on the area that your child needs the most support in. So if your child can hold his own academically but has had trouble making friends in the past, now’s the time to find out who’s going to be in his class next year and see if you can make some connections there. A mutual friend might come in handy to provide introductions and pave the way. If you have the economic means, you could think about throwing a party for some or all of the incoming class. Depending on the severity of your kid’s special needs, you could ask some peers to be helpers (letting them know what the issue is and asking them for their social support in the upcoming years—kids are often incredibly receptive to being directly asked for their help) or simply try to find a friend with a shared interest.
If your child is fairly social but has trouble keeping up in class, you might want to contact the school and get some of the class materials ahead of time so you can give him a solid grounding in them. For example, if your kid’s like mine, getting him to read some of the literary assignments for English ahead of time can really help, so he’s actually rereading them when he’s in class. That extra exposure might make a huge difference in his comprehension (and it wouldn’t hurt for you to read them too, so you can help him work it out when it’s quiz or essay-writing time).
If the school is much bigger than the one she’s been going to, you might want to get on campus ahead of time and walk around, exploring it and getting a sense of where everything is and talking through some of the choices and tasks she’s going to be dealing with during her days there.
We always found it useful to contact teachers ahead of time and just let them know that we were available to give support at home for any issues that might come up. If teachers know you’re willing to provide any necessary tutoring or priming yourself, they’re often not only willing but grateful to stay in touch during the school year, and you’ll know in advance if anything’s worrying them about your child’s academic performance—before he’s hopelessly behind.
Hartley: The communication between parent and teacher(s) is truly key to success in my book. Great advice! What about the nuts & bolts of high school -- like the practicality of a larger school, more kids, more classes, and more transitions? What kinds of things do you suggest parents ask for on their high schooler’s IEP to help them make the transition?
Claire: I have to be honest here and confess that it’s been a long time since I’ve had to deal with IEPs because my son switched to a private school in 6th grade. So I’m rusty on the whole thing—IEPs have their own language and code. But I can tell you some of the things you should think about requesting from the school in general.
One is accommodations on tests and quizzes. We stupidly didn’t ask for these, proud that our son was holding his head up academically (well, mostly holding it up) without them. Then we started thinking about college and discovered that you need to prove your kid’s been getting those accommodations in high school to request them on the standardized college tests. We had to scramble to request them for his senior year—and then wondered why we hadn’t done it before. He really could have used the extra processing time all along and the school was willing to keep it on an “as requested by the student” basis—if he wanted more time, he got it, but he wasn’t singled out in any way.
You might also want accommodations on the actual classwork or homework. If your child isn’t up to writing a long expository paper, the teacher might be willing to break the assignment down into short answer questions—or might at least agree to let you do it. That kind of thing. You want your child to be doing work that’s as close to what the other students are doing as possible, but with accommodations if he needs them.
Some other thoughts: you might want to see if the school’s willing to ask for recruits to help your child out during social times, like lunch or recess, eating with him and introducing him to others. Or if they’re open to starting a club that plays to your child’s strengths (a video game club maybe?) Many high schools are willing to host a club so long as you can get a faculty member or parent to be in charge of it, so you might be able to get something going that will show your child to his best advantage and improve his social status.
Hartley: Love the idea of starting a club! I once read that all a child needs is ONE friend to make them feel socially successful -- and a club sounds like the perfect place to find someone with similar interests. High school marks many big social milestones, and one of the biggest is certainly getting a driver’s license. What is your advice for managing the process of getting the license and the inevitable challenges of increased freedom that comes with having a license?
Claire: In all honesty, if you can throw money at this problem, then do. (Sorry, but there it is.) We hired someone who had worked with kids on the spectrum before and came highly recommended by some parents we knew. He was wildly expensive and insisted on many many hours of on the road time. He said that kids with autism need to be exposed to as many alternate scenarios as possible, since they have so much trouble generalizing. Our son logged a LOT of miles and had done practice tests several times before taking his real test—and because of that, he passed the first time! Of course, if you can’t afford to hire someone for that many hours, then I think you have to be prepared to put the time in yourself. There’s nothing more important than safety.
I’ve heard you can get a sticker for your child’s license that says something about his having autism. It’s not a bad idea. Police have famously assumed the worst about teenagers or young adults on the spectrum, so if there’s a good chance your child might say or do the wrong thing if pulled over, something official explaining their situation could really help
I’ve always felt that cell phones are the greatest invention of the modern world for parents. We will often tell our teenage sons that they have to check in with us by a certain time when they’re out. If they don’t, we let them know we’re not pleased and that if it happens again, we’re going to cut back on the freedom we allow them. But they’re pretty good about it, because they know we’re pretty easy-going about the rules so long as they’re in touch with us.
Hartley: Private driving teacher -- GENIUS! And now that they are driving, what about dates? High school marks the time when dating becomes the norm. When your child is on the spectrum, how does this make things harder? What is your advice for the moms out there trying to help guide their child through the dating world?
Claire: Honestly, I wish I had all the answers for this one. It’s hard out there for a kid who’s a little different but who wants to be dating. Is there anything more subtle and less clearcut than flirting? It’s not something you can teach your kid or prime him for. So there’s no question that kids on the spectrum are at a huge disadvantage when it comes to romance.
As always with social things, you want to encourage your child to meet people with similar interests. There are social groups out there for teens on the spectrum and those can really help. Teaching your son or daughter to be polite, pleasant, well-mannered and to practice good hygiene is important. In GROWING UP ON THE SPECTRUM, we have a whole chapter devoted to various romantic success stories of people we know who are on the spectrum, and the lessons we’ve learned from these stories. (the book covers some of these topics in much greater depth—feel free to take it out of your local library.)
Hartley: Peer pressure. That term strikes fear in the heart of every parent, but specifically those of us who have a child who is so readily willing to do what they are told to by their friends. I am especially scared of this. What is the best way to discuss peer pressure with our kids?
Claire: As frequently as possible! My son hates when I suggest that friends could lead him astray. He’s very literal so as far as he’s concerned, a “friend,” by definition, is someone who would never harm you in any way. But of course peer pressure only works when you actually care about the good opinion of the person pressuring you—a friend can pressure you, a stranger can’t.
We’ve worked hard to instill certain core beliefs in all our kids—drugs are dangerous, driving under the influence is deadly, and you should never break the law—and the corollary to all that is that if a friend tries to persuade you otherwise, you shouldn’t trust that friend. The advantage to kids on the spectrum is that they can be good rule followers. The problem is that we’re always pushing them to be more social, and early on I committed the sin of saying, “play like the other kids,” something I regretted when he was older and I wanted to teach him the opposite lesson of “don’t do what the other kids are doing just because they’re doing it”! Learn from my mistake: teach your child to trust his own instincts rather than to imitate peers who might be untrustworthy.
One thing that’s really helped us is that our son does have a couple of adults he’s willing to confide in (our brother-in-law and a therapist who’s seen Andrew for over 15 years). We know that they’ll always steer him in the right direction and encourage him to talk to them about any sticky situations. If you can find someone like that, someone whom you and your child trust equally, that’s huge. Teenagers aren’t crazy about coming to their parents about problems, but they will talk to other adults who they think are cooler than their parents (and who isn’t?).
Hartley: I recently have started noticing the value of a 'mentor' in my son's life. I originally thought that just having an active father would be fine, but I see now how a 'cool' older brother or uncle would come in seriously handy! Making friends is hard for kids like mine, and I worry that my son will become friends with anyone that will have him – and ultimately that may be the absolutely wrong group of kids. How can we as parents help guide our children’s friendships?
Claire: Yeah, that’s a tricky one. I do think (although maybe I’m wrong about this) that because kids with autism tend to be less social than other kids, that actually allows us parents to have a little more control over their friendships. If you’re the one suggesting your child get on the phone, call someone, and make plans (and are prompting him all along the way), you can probably push him toward a kid you like as opposed to a kid you DON’T like. I’ve also found that (and please don’t tell my kids this) simply being more available to DRIVE when the plan is with a kid you like than with a kid you don’t can do a lot toward steering your child in the right direction! (Literally, I guess.)
I do suggest you really think about what you don’t like about any particular kid. If he genuinely seems destructive in some way, you have to do everything in your power to keep your kid away from him. But if he just seems mildly annoying to you—not the kind of kid you’d pick out yourself, but not evil either—then think about the possibility that maybe the friendship works for your kid on some level.
I fretted a lot about my son’s choice of friends in middle school, because he was often attracted to the loud, boastful, obnoxious types, and the beginning of high school was rocky socially (he started off with a group of kids who later rejected him) but in the end he found a couple of really great friends, boys we liked and trusted and whom he stayed friends with all the way through. In the end, his instincts were right—which I keep reminding myself about as he heads off to live at college!
Hartley: College? Gulp. : ) Any last piece of advice for those Autism parents getting ready to embark on this new – and very scary – part of life with their child?
Sometimes you just have to close your eyes, say “go ahead,” and hope for the best. You can’t hover and protect your child every second anymore. Those days are gone. It’s scary. Your kid is walking off a cliff and there will be bruising and injuries. But the goal is to give her the confidence to move out into the world without you, and she can’t do that if you never let go.
On the other hand . . . Dr. Koegel and I are great believers in “stealth” parenting. You need to fade back, but you don’t need to disappear. A certain amount of controlling the things you can control (staying in touch with teachers, hiring the best driving instructors, visiting school and watching your child from a distance to see how he’s doing, etc.) is valuable. You want your child to succeed as much as possible, which doesn’t mean you cut off opportunities, just that you manipulate those opportunities to the best of your abilities.
Hartley: Thank you Claire for taking the time to be here today! I am inspired by those women who have walked this path before me, just like you!
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To enter for your chance to win a copy of Claire's book or to find other information, resources and inspiration go to www.hartleysboys.com
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Autism and Private Schools
My oldest son, Julian (6), got accepted at St. Anthony's School today. After many nightmarish months battling the public school system, I was just done. He is such a brilliant child, I just want more for him than IEP meetings where nothing ever gets accomplished and an environment where he is not intellectually stimulated. I decided to see if a private school would even accept him....what did I have to lose? It's not like they can take away my birthday or anything...all they could say was "No".
So, I gave this school a call and told them that I had a first-grader that I would like to enroll. I did NOT tell them that Julian is autistic. The whole process could have ended right there. I wanted them to see a very smart little boy before they attach any labels to him. An interview/tour of the school was set up. I made sure to tell them how smart Julian is.
The secretary could hear Julian in the background. He was on the computer navigating Google Earth. He had zoned in on the tallest building in the world which he found on YouTube. The secretary told me that she was going to have the school principal contact me. He called 20 minutes later and Julian was still talking about this building. The principal stated that he himself would like to talk to Julian and would that be okay....
I spent a week as a nervous wreck and finally, showtime arrived this morning. I was prepared to fight but the whole interview went way better than I could have imagined. The pricipal knew right away that Julian is autistic yet high-functioning and he was blown away by Julian. He personally invited Julian to attend first grade! I almost started to cry but I was able to control myself.
I asked the principal why he felt that Julian would thrive at this school. After all, this will be the third school Julian has gone to and he is starting first grade! This school is very strict as most catholic schools are, and the boys and girls wear uniforms. There is no lunchroom, the kids eat at their desks. The principal knows much about Autism and i was told that all of these factors will significantly help Julian. He was very positive and optimistic and so was the rest of the staff. They can't wait to have Julian come to school....insatnt support system here.
I am so proud of Julian I could burst. He conducted himself so well throughout the whole process and he amazed everybody. He walked right over to the globe of the earth in his new classroom and showed us where Finland is, what the weather is like and that the Finnish soldiers fought on skis during World War II. Everybody's jaw dropped...it was awesome. The principal looked at me and stated, "This is an extremely bright little boy you have....we are so pleased that you want to enroll him."
All I have to say is GO JULIAN!!!
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Charter School for Children with Disabilities in Miami, FL needs...
Occupational Therapists, Physical Therapists, Speech Language Pathologists, Substitute Teachers, Multi-Sensory Environment therapists....Contact me at 305-279-3064 or jfernandez28@dadeschools.net
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Autism in Early Childhood Course from the Autism Outreach Project
Autism in Early Childhood (Preschool)
This course will present information related to working with
children with autism spectrum disorder (ASD) from three to five years of
age, especially within the context of preschool. A portion of the
session will be dedicated to evaluation and diagnosis of autism with a
specific focus on description of social communication abilities.
Children who are emerging verbal through conversational skills will be
a primary focus. The remainder of the course will be dedicated to
description of common communicative characteristics observed in children
during this age and presentation of strategies to help facilitate
social communication development and peer interactions.
Presenter:
Jim Mancini, M.S., CCC-SLP, is a speech-language pathologist with over
ten years of experience working with children with autism and their
families. Currently splitting time between Seattle Children's Hospital
and private practice, Jim previously worked at Baltimore's Kennedy
Krieger Institute, Center for Autism and Related Disorders. He conducts
evaluations, provides treatment and co-created a parent education
series designed for families who have recently received an ASD
diagnosis.
Date: Thursday, November 18, 2010
Time: 8:30 a.m. to 3:30 p.m.
Course No.: 16759
Clock Hours: 6 clock hours available $17
Registration Fees: Parents of children with autism spectrum disorders $15
Professionals $90
Participating Locations: This course will be presented at the NWESD, 1601 R Avenue, Anacortes, and is available statewide to other ESDs and school districts via K-20 videoconferencing.
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Awards for Excellent Special Education Teachers
Does anyone out there know of any agency or organization that awards great special ed. teachers based on parent recommendations? My son has a phenomenal teacher who is doing groundbreaking work with him and I would like to see her recognized for her efforts!!! If you have any suggestions, please message me!!! Thanks!!
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Inspiring Story (from the Del Mar Times): Carmel Valley’s mother’s personal experience impetus for helping others
By Karen Billing
Staff Writer, Del Mar Times
Ever since her daughter Erin was born with cerebral palsy 24 years ago, Carmel Valley mom Christine Douheret has advocated for her daughter to live a happy, normal life.
Erin has now graduated college, lives on her own and is preparing for grad school. With all that she was able to help Erin accomplish, Douheret wants to share her knowledge and experience with others as a special needs coach for families of children with special needs or children who are medically fragile. She was certified as a special needs coach through the International Association for Life Quality in Oceanside.
“My daughter’s disability led me to my life’s passion,” Douheret said. “I love to help people and I want to make a difference in the world. I feel like I made a big difference in my daughter’s life.”
Early on when a child is diagnosed, she said there are many processes a parent goes through, the shock, anger, confusion and frustration. Douheret’s aim is to help families set a goal for their child, how they can help their child live the best life they can, which requires tremendous support and planning.
She also wants to make sure the rest of the family is well taken care of, too.
“I want to create balance for the family,” Douheret said. “It’s very important because the special needs of a child can take all the energy and time away from everybody else if we allow it too and the family structure suffers. The goal is to keep the family balanced.”
Douheret’s daughter Erin was born prematurely at 29 weeks and spent two months in the neonatal intensive care unit. She came home on an apnea monitor and remained on it for two years.
“She nearly died in my arms three different times,” said Douheret.
Erin was diagnosed with cerebral palsy at 2 years old and Douheret went to work gathering all the information and research she could. She said it was a very difficult time but she was never afraid to ask for help.
A big help for Douheret as a parent was joining a support group of parents formed by Gayle Slate, a Del Mar parent and strong advocate for children with disabilities, who also founded Kids Included Together.
“It’s so important,” said Douheret of the Carmel Valley group. “Every month for the past 16 years we’ve gotten together, we help each other, share resources, we cry but we also laugh hysterically. It’s so important for parents to surround themselves with a group of parents in the same situation, who understand what you’re going through.”
Douheret discovered Erin’s strength was in her speaking—she started speaking early and it was a key asset for her.
“She couldn’t walk but she could speak well and I nurtured that to the maximum,” Douheret said. “You have to take the assets that you see right in the beginning and really groom them.”
She said they never stopped working with the walking and doing physical therapy, but just focused more on her daughter’s natural and charming ability to communicate.
Douheret moved to San Diego 16 years ago from Los Angeles, unable to find school placement for her daughter there.
“The Carmel Valley schools were fabulous, the special education couldn’t be more custom-designed,” Douheret said.
She attended Carmel Del Mar, Solana Highlands and Carmel Valley Middle School before going to high school at Torrey Pines High School. Her aide at Torrey Pines, Cheri Mattina, has spent the last 10 years with Erin, driving her and going to school with her.
“I couldn’t have done it without her,” a thankful Douheret said of Mattina.
Erin went on to MiraCosta College and Cal State San Marcos where she earned her bachelor’s degree in communication.
Two years ago she moved out on her own and lives with roommates and a companion dog named Talise. She is preparing to earn her master’s degree in marriage and family therapy because she would like to work with children.
“It is my hope that we will inspire others, when the sky is so black we think the sun will never come out again we pull ourselves together, get help and move on,” said Douheret. “We, as parents, need to remain committed in providing our special children all the opportunity possible to have a full quality of life, living as independently as possible.”
For more information on Christine Douheret’s services, call (858) 356-5880.
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Attorney Michael Weisman loctaed in MA is investigating the question:
Please note this opportunity is for those living in the State of Massachusetts...
Is the Commonwealth of Massachusetts currently meeting its duty to provide
sufficient resources to support necessary special education services,
particularly high cost special education services, whether those services are
provided in-district or out-of-district? He is asking parents who would be
willing to talk to him about their experiences in this regard. It is not
certain that this will develop into litigation, as Attorney Weisman is in the
early investigative stages of this matter.
If you would be willing to have a preliminary conversation with Attorney Weisman
about your special education experiences please respond to this email with a
brief description of your situation. What he's really looking for are examples
of school districts blatantly denying services or placements despite clear and
convincing evidence (from independent evaluators perhaps) that the child needs
those services or that placement. If the child has suffered significant
emotional and/or physical harm as a result of the denials that's even
"better." Also the situation should have occurred fairly recently.
Attorney Weisman is with the Boston law firm of Davis, Malm & D'Agostine http://www.davismalm.com/"><span style="color:windowtext">http://www.davismalm.com/</span></a></span><b style="mso-bidi-font-weight:normal"> He served as lead counsel in the 15+ year suit brought in the Supreme Judicial Court on behalf of under-served Massachusetts public school children. The 1993 landmark decision, McDuffy v. Secretary, held
that the commonwealth had a constitutionally enforceable duty to provide all
public school students with a quality education. The victory received national
recognition and was a prime force behind the passage of the Massachusetts Educational Reform Act of 1993.
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Building Language for your Autistic Child
Emerging Language and Building Vocabulary
Language development varies from child to child, and there are wide ranges of expected “normal” language development in young children. If you have specific concerns about the pace of your child’s language development, you should definitely discuss this with your health care professional. However, for reference sake, by the age of two a child is expected to be able to: http://www.stageslearning.com/free-resources/teaching-tips/building-language-your-autistic-child"><SPAN style="LINE-HEIGHT: 115%; FONT-FAMILY: 'Calibri', 'sans-serif'; FONT-SIZE: 11pt; mso-fareast-font-family: Calibri; mso-bidi-font-family: 'Times New Roman'; mso-ascii-theme-font: minor-latin; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin; mso-bidi-theme-font: minor-bidi; mso-ansi-language: EN-US; mso-fareast-language: EN-US; mso-bidi-language: AR-SA">http://www.stageslearning.com/free-resources/teaching-tips/building-language-your-autistic-child">... Read More
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Individual Education Plan (IEP): blueprint for success or obstacle to progress?
I have been observing the process that schools and local authorities use to assess whether pupils have special educational needs (SEN) for some time now. The process has always driven me crazy – I have found myself regularly answering the same questions about how to get a statement of SEN for a child with autism on internet forums and facebook groups, as well as in person. I have also found that parents are generally getting stuck at similar points in the process.
Quick tour of the process in schools in England for those of you not familiar with it:
· Special educational needs (SEN) are suspected, so the school introduces measures that are ‘additional to’ and ‘different from’ those used to support the majority of the child’s peers to learn.
· ‘Additional to’ and ‘different from’ measures don’t result in progress, so the child is placed at ‘School Action’ and more intensive measures are used.
· Child fails to make progress at School Action so is moved to School Action Plus (SA+). At SA+, advice is sought from external professionals (e.g. Speech and Language Therapist, Educational Psychologist) to influence the development of new targets and new strategies to meet need.
· Child fails to make adequate progress at SA+, so the school makes a request for a statutory assessment. If statutory assessment finds that the child’s needs cannot be met from within the resources available to the school, a statement of SEN is agreed.
Throughout this process, the mechanism for monitoring and reviewing progress is the Individual Education Plan (IEP). The IEP should underpin the process of planning intervention for the individual pupil with SEN. It should focus on up to three or four key individual targets and should include information about:
§ The short-term targets set for or by the pupil
§ The teaching strategies to be used
§ The provision to be put in place
§ When the plan is to be reviewed
§ Success and/or exit criteria
§ Outcomes (to be recorded when IEP is reviewed).
Recently Dixon and I found ourselves supporting a local Mum of 3 girls, two with Asperger’s Syndrome. The elder of the two had been at School Action Plus for eight years. Yep – eight years.
I submit to you, m’lud, that eight years is not a reasonable time for a child to remain at School Action Plus. Either the child makes progress (hmmmm….’progress’….we’ll come back to that one) and is downgraded from School Action Plus to School Action, or does not make progress and so a request is made for a statutory assessment.
The parent who we were supporting had made repeated representations to the school regarding statutory assessment but these had all been turned down. The view of the school seemed to be that the child’s needs weren’t severe enough to warrant a statutory assessment (groan…..the old Asperger’s Syndrome myth again….)
In fact, during this time, the child had been signed off school by her doctor for a year. Whilst at school, she had been known to faint on several occasions, and Mum reported that at one time, her daughter was regularly vomiting in the morning before school.
After some discussion and consideration of options, Mum decided to make a parental request for statutory assessment. Parents can do this at any time - our experience is that most parents don't know that this option is available to them. A meeting of relevant professionals was convened by the local authority to collect the information required to make the case for statutory assessment. Dixon accompanied Mum to the meeting and helped her to ensure that all the relevant paperwork was submitted in support of her case.
We won’t know the outcome until mid November….we are hoping that the child will be given a statement and that the local authority will agree with Mum’s view that the only local school that can meet her daughter’s needs is Bright Futures School.
What has stood out for me in this is what chimes with the experience of other families I have encountered who were in a similar position – that it is often the inadequacy of the IEP and the failure of the school to monitor progress that are the blocks to statutory assessment .
Parents are at the mercy of the school here. If I had a pound for every time I’ve heard parents say the school told them that their child wouldn’t get a statement, I’d be on my way to bailing out the Eurozone. And I don’t think I’ve ever seen a good IEP…….isn’t that just woeful? No wonder so many of our kids aren’t getting their needs met appropriately. Most parents don’t know the system, they don’t know their rights, and they don’t know how to hold the school to account. Generally you wouldn’t know how to do any of that unless you’d been through it…..so parents are in a cleft stick.
In order to help un-cleave us, Dixon and I (who have now been through several versions of it) are in the middle of writing a parent-friendly paper that discusses how to hold schools to account via the IEP, as well as how to make sure the IEP is meaningful and measurable. I’ve just joined Google Plus and I think it has a document sharing facility, so will see if I can get it on there once it's finished (I guess that could be some time, knowing me and techno.......)
In my next post, I will share an example of a poor IEP and then share some thoughts on what a good IEP might look like.
Meanwhile, here is the latest offering from the NNNJ kitchen – our ‘not Jamie’ chicken pie from Jamie’s ‘Meals in 30 Minutes’.
Thanks to this recipe, and to his participation in the cooking, Louis (above) is now eating mushrooms (which were in the sauce).........the NNNJ kitchen works its magic on typically developing kids as well J This one didn’t work for Philip, but hey, you can’t win ‘em all.
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Autism and the Holidays
These days nearly everyone knows a friend or family member who is touched by Autism. Perhaps it’s your own child or your sister’s child. Perhaps it’s it the child of your neighbor, your dentist, your mail carrier, or hair dresser. Does your daughter teach a special needs classroom? Is your brother a speech therapist?
With the holidays fast approaching, you will inevitably have to answer the question: http://www.theautspot.com/blogs/createthread/www.stageslearning.com"><A href="http://www.theautspot.com/blogs/createthread/www.stageslearning.com">what gifts are appropriate for individuals affected by autism or related developmental challenges?
Autism is a complex syndrome that affects a family in so many ways: it is emotionally draining, demanding on time, and challenging for relationships… but, perhaps above all, it is expensive! Rather than a scented candle or a box of golf balls, consider selecting gifts that will support your friend or family member’s efforts to teach their child with autism, or their students or clients with autism.
If you are a parent of a child with autism searching for a gift for your child’s teacher, consider giving educational tools and toys that he or she can use in the classroom. Teachers spend so much of their own money on supplies; they would certainly welcome a box of language cards or a set of manipulative puzzles over a crystal apple or another box of chocolates!
Children with Autism face special challenges when it comes to learning through play in the same fashion as their typically developing peers. The toys which would hold particular educational value for most children are not always appropriate for a child with autism. Perhaps the best thing you can give to that child, are tools to help him or her develop the language and skills to help them play with their siblings and peers in the future.
“An investment in knowledge pays the best interest.”
~Benjamin Franklin
http://www.theautspot.com/blogs/createthread/www.stageslearning.com"><FONT face=Calibri>http://www.theautspot.com/blogs/createthread/www.stageslearning.com">Stages Learning Materials is offering free shippig for the holidays. Best wishes for a happy holiday and a new year filled with growing, learning and thriving.
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Happy Holidays!
Hello, and Happy Holidays to everyone. I just wanted to drop a quick line to let you know that Stages is offering 30-50% off on a wide variety of products to help you get gifts for the holdiays. Our games make great gifts for your kids, and our educational teaching tools like the Language Builder Series would be a very welcome present for your child's teacher!
Visit http://www.stageslearning.com/">www.stageslearning.com</A> for the sale.
Best Wishes for a joyous holiday and a successful 2012 for you and your children!
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Students Traumatized in Special Education Across America: Seclusion, Restraint, and Aversives
Hello,
Just sharing my latest article which has lots of links and references which can help parents, advocates & schools understand the negative effects of restraint & seclusion, but most importantly, how to help schools prevent restraint and eliminate seclusion/aversives. Students Traumatized in Special Education Across America, Seclusion, Restraint, and Aversives Scream Rooms...when will America say enough is enough?
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