Autism and the world of "what ifs"

Jennifer Mandell

One of the worst feelings as a parent of a child with autism is not knowing if you are doing enough for your child and constantly second guessing yourself if you should be doing something different then what you are.

I have 5 sons and my youngest -- my 3 year old -- has autism. We had started early intervention at the age of 18 months along with ABA. We also took him for additional feeding and speech therapy too. We started looking for schools for Sam when he turned 2. Everyone told us we were crazy for starting to look a year ahead of time. The way I looked at it was we needed to be well informed what schooling was out there and I didn’t want to settle for what our Board of Ed was going to offer. To make a long story short when he turned 3 they did try to keep him in district. We fought them and they agreed to send him out.

We had three top schools we wanted Sam to go to. The first two we really wanted him in, but the directors told us they weren’t going to have any openings for some time, possibly years, but they would add his name to the list of thousands of other kids. I asked how they go about bringing in a new student, and was told they start with whichever class room needs a child – so they would pick an age and go to that set of files and start the interview process. What a terrible feeling to be at a school that you love, knowing they can help your child but then they tell you “Hey too bad the list has thousands of kids, and it’s like winning the lottery to get him in here, but thanks for coming to our Open House.” Keep calling, they say, and I do but still no openings.

The third school we go to and we love it there but more importantly Sam loves it there. I have gone and observed many times there and he is making progress and he is doing well…But as a parent I am kept up every night with “what ifs”….what if he got into one of the other schools – would it be better for him?? What if his school now isn’t doing enough speech or OT for him?? What if we did move him to another school but he regresses instead?? What if he should be getting more therapy then what he is after school??? What if what we are doing is too much for him?? What if he never eats?? What if he never talks?? What if something happens to me – who will care for him?? What if…..Then I open my eyes and it is the morning – about 5:30 am usually and I hear Sam in his bed making his noises which to many just sound li...

Cheering your child on to success – how to prepare for an IEP

Cynthia Falardeau

I am a fan of public education; I wave my pennant because I am proud to be a product of it. I also shake a big pom-pom to show that I believe in an Individualized Education Program (IEP). An IEP is the game plan to help students with special needs score the ultimate “touchdown” to become an educated and an independent individual.

What is an IEP?

An Individualized Education Program, commonly referred to as an IEP, is mandated by the Individuals with Disabilities Education Act (IDEA). IDEA requires public schools to develop an IEP for every student with a disability, who is found to meet federal and state requirements for special education. The IEP must be designed to provide the child with a Free Appropriate Public Education (FAPE). The IEP refers to the educational program to be provided to the child with a disability, and to the written document that describes the program.

What is Great About an IEP?

What I love about this approach is that a team of professionals interact with you and your child, and help develop a customized plan. The team evaluates many factors including access to the general curriculum, how the student’s disability affects the student’s learning, it helps develop goals and objectives that make the biggest difference for the student, and ultimately, it helps to decide a placement that is the least restrictive for the student.

The Role of the Parent- It All Starts With You!

The reality is that it really doesn’t matter how great the school district is, or how wonderful the teachers are, if a parent or guardian is not actively involved. One of the most vital members of the IEP team is a member of the child’s home unit.

Be Pushy With a Purpose -Fight For Your Kid!

Our son, Wyatt, just turned seven. He started in the public School system’s Pre-K ESE program at the age of three. I will tell you that I have not always been a fan. I have made many mistakes in my effort to fight for Wyatt. But during the course of four years (and more than a dozen IEP’s), I have learned a lot. I have cried, anguished, and alienated people who tried to help. I still have not mastered it all.Here are a few tips that I hope will help other parents be “pushy with a purpose” for their kids:

1. Imagine What You What For Your Child

You have to think about what it is that you want for your child. What goals do you think need to be set? How will these goals be supported by what you do at home? What support(s) do you think need to be put in place to get there? It’s OK to dream big! We longed to hear our child speak. It took almost four years to make it happen, but we did it!

2. Remember that There is No One 'Cookie cutter' Plan for Every Student

Just because a friend was able to secure a one-to-one aide does not mean that you will also be afforded that opportunity.There is no access by association. It is also important to remember that yo...

Teaching students who are low-functioning: who are they and what should we teach?

Dr. Cathy Pratt & Rozella Stewart

During recent years, interest in individuals with autism who are high- functioning has grown as increasing numbers of students who fit that description have been identified. During the same period, those who advocate on behalf of students with severe cognitive disabilities have continued their search for information on teaching, working, and living with individuals perceived as belonging to this more challenging group. Before discussing programming issues, it seems important to first attempt to clarify who these individuals are who are referred to as low-functioning.

The most common tool for identifying this population of students are standardized test scores. It is commonly believed that 70% of students with autism also have cognitive disabilities. However, we need to be careful when using formal instruments to determine levels of cognitive functioning. During the past several years, professionals and family members have become keenly aware that traditional methods for measuring true intelligence, such as standardized tests, are often flawed in ways that can reap highly unreliable results. Although information gained through the process of testing can provide us with valuable information about how a person learns and about areas of difficulty, standardized tests are virtually never a true predictor of future success. Many adults who were considered severely disabled as students, are now able to secure jobs, live in a variety of home environments, and are able to become members of their community when appropriate supports are in place and when taught necessary skills. Labeling a person as low functioning may in effect serve to limit the person's potential by limiting our vision for that person.

Clearly, students with autism who have severe cognitive limitations can be challenging to educators. However, as professionals and family members review the literature on autism, beware of the dichotomy between low- and high- functioning. These two groups often are referred to as if they are two discrete and separate categories of individuals. Realize that there are individuals with autism who may be gifted in certain areas but who are extremely challenged in others. Conversely, students with the label of severe disabilities can possess exceptional talents. In other words, students labeled as high-functioning may be severely disabled by their autism. And those who are labeled as low- functioning may be less affected by the characteristics associated with autism.

Generally, those who are labeled as having a severe cognitive impairment are individuals who have greater difficulty with social skills, and academic performance. They often have few readily recognized and/or socially appropriate means for communicating with others. It should not be surprising then, that these individuals may more readily exhibit challenging behavior...