I met a new blogger this week. I mean, I met a blogger I haven’t known before now; she’s not really a “new” blogger. She actually popped over from the Mom Blog Network, which just goes to show you it was worth signing up with all the social media sites I have over the last year and a half. 
Anyway, Shawnda’s blog is called Asperger’s Syndrome Awareness, and she is also writing a book about her experiences raising her son, who is 13 and has a diagnosis of Asperger’s. Pretty cool!
I was reading some of her posts and was intrigued by her thoughts on Least Restrictive Environment and whether the way it’s put into practice is really the best thing for some of our kids. I’d love to hear your thoughts on what she has to say about it. Do you think, like Shawnda does, that it’s often really code for spending the least money possible?
How confident do you feel going into a meeting to write an Individualized Education Program (IEP)?
Today over at 5 Minutes for Special Needs, I am sharing some resources for learning more about the special education process and how you can advocate for your child. Please stop by and leave a comment with your favorite books or websites on the topic.
Related Posts on Advocacy/IEPs:
Happy Friday, everyone!
Well, so far I have had just one vote for a topic in the new Skribit widget I installed, and that was on the Little Guy’s transition from preschool to kindergarten [insert plea here for readers to suggest topics and/or vote on topics in the list].
I am ashamed to say the process hasn’t gotten much farther since my last post about it. After a couple of unanswered emails from the school psychologist, I called her and was told that she hadn’t gotten either of them and that they must have gone into the district’s spam filter. So I told her what I was looking for in regards to classroom visits, a team meeting prior to the IEP meeting, and the involvement of the autism consultant.
On the phone, she seemed unsure of what she could commit to on any of these items, but thankfully she called me back the next day with answers on all of them. So, here’s the current plan:
- Visit both kindergarten and first grade classrooms this Thursday afternoon, with a chance to talk to each teacher and also to sit down for a few minutes with the psychologist and principal.
- Meet with the team on the following Thursday to discuss the ER (Evaluation Report) and IEP (Individual Education Plan). Yes, this is only one meeting, but it is early enough that we could meet again and I do not plan to sign the NOREP (Notice of Recommended Educational Placement) at the meeting.
- Autism consultant will be in attendance to provide “input into the IEP” – and I can make my case for her inclusion on the actual document. (Wow, we are now looking at between 8-10 people attending this meeting!)
I had a follow-up call yesterday with the supervisor of elementary special education for our school district today, and we discussed some of my concerns regarding the grade placement. Her advice is to take the long view approach and consider the Little Guy as a sixteen-year old who wants to play sports and go to dances and learn to drive; then ask myself if another year now might be of help to him later. She was very helpful and had some good suggestions for a couple of other concerns and issues I brought up as well.
So now I need to know what to ask the teachers/principal about grade placement – any thoughts?
Note: The first two texts deal specifically with special education law and the IEP process in the United States. The third book is more general in nature.
Have you ever read the Individuals with Disabilities Education Act? It starts out with the following statement of the findings of Congress (emphasis mine):
Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving education results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities. 20 U.S.C. § 1400 (c)(1)
Whether you feel that your child’s school is working towards these results or not, it is wise to educate yourself about the system and the laws governing it so that you can be an effective advocate and member of the IEP team.
In The Complete IEP Guide: How to Advocate for Your Special Ed Child, Attorney Lawrence M. Siegel covers the rights and procedures under IDEA (Individuals for Disabilities Education Act) for children between the ages of 3 and 22. He gives information and advice regarding the entire IEP process, from getting organized and understanding the evaluations to writing goals and even resolving disputes. I have found this book to be well-organized and very helpful.
Wrightslaw: Special Education Law by Peter W.D. Wright, Esq. and Pamela Darr Wright, MA, MSW includes the text of the key laws & regulations governing special education, including IDEA, Section 504, and NCLB (No Child Left Behind), as well as US Supreme Court decisions involving this area. The Wrights offer trainings on this subject, which I highly recommend. If you cannot go to one in person, they also have a massive Wrightslaw website with tons of resources, including some online trainings.
Another book from Pete and Pam Wright is Wrightslaw: From Emotions to Advocacy, which they tag as “The Special Education Survival Guide.” The goal of this book is to assist parents in moving beyond simply being overwhelmed and becoming effective advocates for their children’s education. One really nice feature is a selection of sample letters, which cover a variety of situations that may arise over the course of the IEP process.
I’m sure there are other resources available in this area. If you have others that have been especially helpful, I would love for you to share them with me.
I posted last week about the decision we need to make regarding kindergarten versus first grade and got some really good input. (Thanks, CampHillGirl, Hands-Free Heart, Robin and Susan.)
I also posted this question on the listserve for the local chapter of the ASA (Autism Society of America), and almost everyone who replied there was in favor of starting with kindergarten, given where the Little Guy is with social skills and emotional development. Several of the parents had their children wait a year for kindergarten, even for some of their typical children with late birthdays, and all had been happy with the decision. One who went forward to first grade later had to have her child held back and said that she (the child) is now bothered that she is a year behind the kids she started school with.
A few people brought up the fact that our school district has 1/2 day kindergarten and suggested I request a full day program for him. Some ideas for the second part of the day were to be in the learning support room and receive his other services during that time, or to be in the first grade class for certain subjects. Whatever the solution, they recommended that academics be addressed in the IEP, not just speech/OT/behavior goals.
I was definitely encouraged to visit both classroom settings, and one wise mom suggested that a good test of his success starting in first grade this fall would be whether I could “plunk him down in a Kindergarten class right now with no problems.” She did also say that “typically our kids developmental delays really start to show here [3rd and 4th grade]. An extra year now may be a bit boring but invaluable later.”
Another mom said, “School is so much more than academics. There are the challenges of transitioning from one activity to another. There are large classrooms, noisy cafeterias, socially complex playground dynamics, and gym classes that stretch the limits of our kid’s coordination and skills in cooperative play. It is tough.”
So, I guess the next step is to visit the classrooms and then talk with the school psychologist and SLP more about the options that would be most appropriate for the Little Guy. I also need to do some research about what the school is required to provide in terms of academics at the child’s level when they are ahead of their grade in some areas. Any other ideas/resources are welcome and appreciated!
Last month, the Little Guy had a psychological evaluation for the purpose of having his behavioral health services reauthorized for another year. Even after filling out the paperwork to have his info released to me, they only sent me a summary, not the full evaluation. So I didn’t have any of the discussion sections, just the presenting info, diagnosis and recommendations. I was quite surprised to see a second diagnosis listed (his primary is autistic disorder, of course) – Disruptive Behavior Disorder NOS.
This was quite alarming to me, so I began looking up information on this diagnosis. I learned that there are three major disorders under this category – ADHD, Oppositional Defiant Disorder and Conduct Disorder. The NOS (Not Otherwise Specified) distinction would mean that a person had significant impairments but didn’t fully meet the criteria for any of those. The diagnosis is generally given to someone whose main issues are behavior-related; and the best treatment is considered to be parent skills training, presumably because the parents need to learn how to handle a child with one of these disorders to help them succeed as much as possible.
Now I had always heard that most psychologists do not give a diagnosis like this to a person with a Pervasive Developmental Disorder (of which autism is one) because issues with attention and behavior are presumed to exist and to stem from the neurological deficits of PDD. Without the full evaluation, I was at a loss to understand why this label would be appropriate for LG.
I went to the psychologist’s office yesterday to pick up my copy of the full evaluation and to meet with her. I had a list of questions to ask and was basically going to treat this as a fact-finding mission and try not to get too emotional. Well, before I could even start in on my list, she asked if I was concerned about the diagnosis and went on to say that it wasn’t supposed to be on his evaluation. She said that she didn’t have anything in the discussion sections about it and that her supervisor, who reviews all her evals, did not put it in. She believes it was a cut and paste error from using a template when typing up the eval, and they are submitting the change to the insurance company.
So in less than five minutes, I was back out the door, completely amazed by the outcome of the meeting. I don’t know if my request for a meeting is what prompted her review of the eval or if the problem had already been noticed, but I am so relieved and thankful that we don’t have to worry about another label being put onto Little Guy. We have enough to work on as it is!!
P.S. While looking for the diagnostic criteria in a friend’s copy of the DSM-IV, I found a section on caffeine-induced disorders (there are four)! They are sandwiched between amphetamines and cannabis. There was no specific mention made of Mountain Dew, however, so maybe I have Caffeine-Related Disorder NOS!!
