The latest case where parents greatly contributed to IEP problems had me reviewing and rethinking the questions I will give to parents in my Initial Intake session. Obviously, I missed the indicators showing some very important issues that the parents had.

Specifically, the parents continually complained that their son had made no progress, despite having been in special education for at least five years. In and out of the IEP meetings, I searched for evidence to support that parents’ contention that their son had made no progress, but instead I found the opposite. Now, I will be the first to admit that the progress had not been amazing, but it had indeed happened. The most frustrating part was that despite clear evidence that their son made substantial progress once I entered the case, the parents continued to claim that no progress has been made. It became glaringly clear to the rest of the IEP team that the parents did not understand their child’s disability, how it affected him in and out of school, and how it would continue to affect him for the rest of his life. The IEP problems were never going to go away as the parents were living in denial, somehow believing that their son would be cured and would never need any support. And they were angry that this cure had not yet happened, and blamed the IEP team.

I had continually asked the parents to clarify their wants and needs, to let the IEP know that they wanted, or needed, to see happen so that they could indeed say that progress had occurred. But they would never do this very important step. And that meant that the IEP team was stymied. How could we talk openly, or write more appropriate goals when we did not know what was important to the parents?

Yes, parental input is vital to resolving IEP problems! Parents who bring their clarity to the IEP allow the IEP team to ensure that the goals written are indeed appropriate. And that, in turn, dramatically lessens the probability that there will be contention in the IEP.

The second major issue that is the basis of parental problems in the IEP, is when parents do not understand the IEP process. I will admit that this is an area that dumbfounds me. In this day and age, this should never, ever happen! There are so many books, websites, and even agencies that are available to offer support and education to parents on the IEP process, but so many people simply do not take the time to access these vital resources. And the results can be devastating.

Specifically, the ignorance of these parents meant that the IEP team wasted time continually going over and over the same things, never being able to move forward. It was very frustrating for all involved. And I felt most sad for their son. Oh, these parents truly believe that they are the only ones fighting for their son! They undoubtedly love their son but their refusal to learn and to listen to others means that they are inhibiting the IEP process and actually causing the IEP problems.

Sigh….I will continue to work towards educating all the parents I can on the importance of education, for themselves and their children. I hope that by doing this I can help to prevent many of the IEP problems that I encounter as an advocate.

www.youtube.com/watch?v=adVzQ8KaqPQ

Digital Scribbler, Inc. is, according to their site, ” a startup of the social entrepreneurship variety.  Our mission is to apply technology to the task of overcoming human limits.” Quick Talk AAC is designed to be simple to use, easy to understand, yet also customizable and, most importantly, affordable. Go to the Digital Scribble, Inc. site to learn more about their interesting story and mission.

I wish I could tell you that I had personally tried the Quick Talk AAC app but unfortunately, at this oint I have not. But my mission as an autism advocate and parent coach has always been to pass on information as quickly as possible to my clients. From their reports, I am able to then refine my recommendations. So, please, feel free to email me and let me know your personal experiences using Quick Talk AAC.

My son has been one of the lucky people on the autism spectrum in that he is verbal. Yet that does not mean that he is able to comprehend or communicate effectively. At times, I believe that a device such as Quick Talk AAC would also be of benefit to people such as my son. Having the opportunity to use a visual system would surely help him fill in those difficult and sometimes anxiety ridden moments when he is unable to find the words needed to communicate effectively. At least, it would be worth trying.

My good friend, Chantal Sicile-Kira, has a wonderful son, Jeremy Sicile-Kira, who very successfully uses a communication device (obviously not the Quick Talk AAC app!). It enabled him to complete his high school education, begin his college studies, and work with his mother to write an amazing new book that I will be reviewing shortly.

I have clients of various ages with varying levels of ability to communicate. I have often suggested that they consider using the iPad. I am thrilled to be learning more about the Android system and the apps that are designed for it, such as Quick Talk AAC. If you have had an opportunity to use both of these devices, I would appreciate hearing your opinions on both.

Quick Talk AAC looks amazingly easy to use. I love the fact that you can record your own voice rather than simply using the computer generated voice!  And the huge number of available pictures to choose from, as well as the ability to use your own pictures, makes this an exciting new tool that I hope will enable so many of our children and family members to communicate, to finally have a voice.

The most basic fact that parents do not understand is that due process is an extremely expensive step. You must hire an attorney and your bills will be a minimum of $20,000 and upwards of $50,000.  The other fact that is often not known is that, despite the legal timelines, due process will drag out, sometimes for 2 years. The emotional toll added to the financial toll is enormous.

Even if the parents “win” the due process, they are unlikely to be able to recover your legal fees. AND they will need to pay for all of the expert witnesses needed  to try and prove the case. Few parents have the financial resources to take on a school district.

So, the first question parents needs to ask is “Can I afford due process?”, either financially or emotionally.  Most parents cannot. Many choose to pay for their child to receive additional support services privately, or to even enroll their child in a different school. These options are often easier and cheaper.

So, what about mediation?? Good question!

After due process has been filed by either the parent or the school district, the first option is for both sides to meet with a mediator to try and resolve the problem. Neither side should have any kind of representation. Depending upon where the case is filed, the mediation can look VERY different! Some districts utilize the resources of a professional mediation company. While this may sound wonderful, be warned than many “mediation” companies are terrible at mediation! Instead, they end up acting like little judges, satisfying only the side that they believe is “right” and leaving the other side completely frustrated. The success rate of follow through from these mediations is usually very low.

Other districts have created a more personal form of mediation based on alternative dispute resolution (ADR). I have been trained in this process so I will be the first to admit that I may be biased in its favor! In this process, everyone sits in the same room and there is usually more than one mediator. Unlike other forms of mediation where the mediators are actually the decision makers, in ADR the role of the mediators is to keep the parties talking (not yelling) until a resolution is achieved. The mediators might occasionally give a suggestion to the parties if there is a stalemate, but it is truly only a suggestion, designed more the get the process moving again.

ADR has a much higher follow through rate than any other form of mediation. This is because both sides have been involved throughout the process and have had an opportunity to state their case AND to help form the solution.

Mediation should always be attempted before going to due process. I would encourage all involved to think long and hard before taking that final step as it rarely leads to an outcome that is satisfying to all in the long run.

Robert A. Naseef, Ph.D. is is a psychologist, author, and father of an adult child with autism.  He has done amazing work with parents, including a new documentary, “Autistic Like Me: A Father’s Perspective”.

www.youtube.com/watch?v=iMHyzsXml50

Over the years as an autism advocate and parent coach for autism, I have helped many parents to become closer to their child, or children. My work is very holistic, so I try not to work only with one parent. Yet, most often the parent I become most involved with is the mother. Fathers have a more difficult time relating to their child with autism. Robert A. Naseef points out that this is usually because men have a difficult time dealing with anything that they can’t fix.

The wives and mother’s already know this!! But they are often so overwhelmed with their own emotional struggles and dealing with day to day issues that they don’t have the time to devote to the needs of their spouse. Guilt is pervasive and undermines even the strongest of marriages.

Robert A. Naseef puts the spotlight on this problem,  giving fathers of children with autism some ideas on how they can still have an amazing relationship with their disabled child. This is an important step to creating more honest and strong familial relationships.

First, you must be very clear on what problem actually exists! Many people write IEP goals without clearly thinking about WHY the goal needs to exist in the first place. The best thing to do is steer clear of professional “lingo” and think more about how the student displays the difficulty in school. For example, you may have a child who has “poor social skills” – this is the professional “lingo”. But how does that show up? Does the child hit others, is unable to greet peers, to talk about topics not of their choosing, etc.?? (AND always think about whether the child can do these things INDEPENDENTLY or not).

Now that you have clarity on how the problem looks in everyday life, you get your baseline date (you may not actually be able to write and agree on this goal at this point if the correct baseline data has not yet been collected). DO NOT SKIP OVER THIS STEP OR TAKE IT LIGHTLY!! IF YOU DO NOT HAVE A “STARTING POINT”, (baseline) YOU CANNOT MEASURE PROGRESS!

As you  are writing this IEP goal, consider all the things you need in the goal. Can it be done in one goal? Or do you actually have to write a few goals that specifically work on the various skills that make up a whole skill?? For example, if the student “has trouble keeping up with the class”, you may need three goals – one for starting work on time, one for staying on task for a certain amount of time or for a certain subject with/without prompts, and one goal for completing the task either on time or within a few minutes of the rest of the class. The IEP team will need baseline data for each of these goals.

Many times, I have seen a team write a single IEP goal that covers all these areas and the goal tends to get repeated many times in many IEP’s. The reason is because it covers too many separate skills that should indeed be given their own separate goals.

Now, as  you are writing the IEP goals, make sure you are indeed able to measure the skill. It must be a behavior you can actually witness, anyone can measure it objectively, and it is for a very specific time. For example, do not try to take data over an entire day! Focus on a part of the day when the problem is most evident. For example, if a student has more problems during English rather than Math, then focus on the behaviors when the class is doing English and specifically add that to the goal. And this should also be the same time of day that the baseline data is generated.

Clearly state who will be taking the data and how the results will be presented. Will the regular education teacher take the data, or the Special Day Class aide? Will a data sheet be kept (date, time. behaviors) or will it best be measured by student work samples?

Writing IEP goals can seem overwhelming, but by taking your time and following the basic steps outlined above, you will find yourself writing IEP goals that make sense, are focused, can be measured, and the team can easily see if the student is actually making progress.

As an autism advocate and a parent coach for autism I have been blessed to work with many families over the years. The kids with autism have been all over the autism spectrum and I have seen many of them grow into young adults. I have even had the opportunity to work with some adults who are now in the middle years. Aspergers adults present challenges especially to their family members most often because they still live at home and they have so few life skills to be truly independent adults.

There are many reasons for this, but I’ll go into those in other posts. Today, I want to focus on what parents can do to help themselves and their Aspergers adult child.

By the way, I am in the final stages of putting together a document that will be available on my website that will go into more detail than I can possibly do in this blog post.

Two things are needed before you can begin – a goal, and a baseline. Let’s start with the goal. For the purposes of this post, I’m going to assume that I’m dealing with a 21 year old Asperger’s adult. I am sure readers will be able to adjust my advice for their own individual Asperger’s adult.

GOAL:  Write down your vision for your child at age 25. Not what you are expecting based on the fact that at the moment your Asperger’s adult child can’t/won’t get off the couch and out of the house! No, base it on your dreams for your child. For example, you’d like him to have friends, have a full time job, drive a car, have a checking account, etc. Fill in with as many details as you can possibly can.

Now, work on the baseline. Be brutally honest here! This is no time to gloss over anything. And be as specific as you can.

BASELINE: Write down what your Aspergers adult child can AND cannot do. Think about same age peers, what they can do and what you’d like your own child to do. AND focus on what your Aspergers adults child can and cannot do INDEPENDENTLY. Especially the things that you find so very frustrating! But be specific. For example, do not simply say “he has poor social skills” but say “he has poor eye contact, he can’t shake hands, he can’t have a conversation. He can tell you every fact about fighter planes but he has no interest in anything someone else wants to talk about. He can’t drive, he sits on the couch playing video games for 6 hours straight. He can’t cook a meal. He can’t make a sandwich. He won’t cook for anyone else. He can’t/won’t clean his room. etc.”

Now, for both the goals and the baseline, go back and prioritize them. What is the #1, #2 and #3 for each category? Right now, what is truly the most important for your Aspergers adult?? Once you have that done, go to the following step.

Focus on Goal #1 at age 25. Now, what would need to be in place at age 24 in order to reach the goal at age 25? Write it down. Then, go down another year – what would need to be in place at age 23  in order to reach the age 24 and the goal at age 25?

You are now creating a Plan Of Action for yourself and your Aspergers adult to change, and to create the life he, and you, deserves.

Check out my website for the book I’m creating with more details to help with this important and life changing process.

1. Use visuals NOW to prepare your child with autism for school. Take photos of everything you can – the school grounds, the bathrooms, the front of the school, kids, the playground, the teacher, the principal etc. Take your child on many “walks” or “field trips” to the school so that he/she gets acclimated.

2. Get school outfits ready NOW! Buy the clothes, make sure they are the right colors, fabrics, textures, remove tags etc. Some parents even take more photos of these and then use them in either a photo album, or a visual board to help teach a child with autism how to dress. This is perfect autism school preparation.

3. Your child’s backpack should be purchased ahead of time. Your child needs to be able to become used to it – the look, feel, smell and even taste (depending on your child with autism!).

4. Shoes – don’t forget to buy them ahead of time. Allow your child to wear them around, to break them in so that they are comfortable and won’t create blisters or tantrums.

5. About a week before school starts, begin waking your child up and put them to bed on the school schedule. Don’t put this off until school starts. It creates sleepy and irritable kids! And this is regardless of a diagnosis of autism.

6. Food – make sure you have more than enough food on hand for school snacks and lunches. Try to stay away from fast foods, foods with preservatives and fool colorings etc. Fresh vegetables and fruits are a good starting point.

7. Put together a “Letter of Introduction” about your child with Autism for his/her teacher. Make it just a page in length. Add a photo and basic information about what your child likes and doesn’t like, what works and what doesn’t. And remember to add a friendly personal message and all of your contact information. Many parents also add a copy of the IEP highlighting the goals and any accommodations.

What else to do as school preparation for your child with autism? I know – smile and put a bottle of champagne in the fridge. Crack it open on Day 1 when you finally get a well deserved break.

I just opened a new posting from Wrightslaw today about letter writing and I thought it was great. Now, I don’t always agree 100% with what they say on their site, but I have also spent many hours as an autism advocate and parent coach going over many of these same letter writing techniques.

Writing a good letter, or even a series of good letters, can give you a huge advantage in any IEP meeting. A well written letter accomplishes a number of tasks – it shows that you are an informed parent, that you are on top of the situation and keeping tabs on the IEP team, that you are not intimidated, and that you know how to create and appreciate the “paper trail”.

I have written other blogs posts on the “paper trail”. Basically, it is the written record of the events in your child’s life from your point of view. These written records are most often created when the events are still fresh and should be clear and concise.

One of the most important things about creating this written record is that unless the school district disagrees IN WRITING, then your letter becomes FACT. This can be of vital importance is ever a case goes before a judge (due process).

So, please take some time to look at this link. The points are well written and well thought out. Print them out if need be, so that you can easily refer to them the next time you need to write a letter to your teacher or school district.

www.youtube.com/watch?v=loLFdIn3WTs

The CATCH Foundation, which stands for Curing Autism Through Change and Hope, was started by Orlando Hudson. This amazing professional athlete plays for the San Diego Padres. I encourage you to go to his website and read about the wonderful reason he started the CATCH Foundation. No, he is not a parent of a child with Autism! That’s just one reason why this is such a special person and the CATCH Foundation is so amazing.

Parents of children with Autism are used to seeing organizations and foundations that have been created by people just like us. Parents who are struggling daily with the pressures of raising a child with autism, but somehow these parents find that extra energy and love to be able to create a support system to help others. To find this same thing being done by someone who is not a parent of a child with autism, but simply a wonderful warm and caring human being, touches my heart. And I hope it touches yours too.

Please consider supporting the CATCH Foundation today.

If you like to bowl, then here is another way you can support the CATCH Foundation:

“Orlando Hudson of the San Diego Padres is calling for a different kind of strike.  Join Orlando Hudson and more of your favorite past and present Padres players for a few hours of good, clean fun in the bowling alley.  The Strike Out! Autism Bowling Fundraiser will take place on Thursday, July 28, 2011 from 7:00 p.m. to 10:00 p.m. at East Village Tavern and Bowl.

www.youtube.com/watch?v=-Dv-9tTrvlE

I have watched a number of Ernie Els interviews about how he and his wife have gone through the same kinds of emotional struggles that we all do when faced with a diagnosis of autism. It has been amazing to see how wonderfully the pro golf community has stepped up to support the Els family, not only as friends but as colleagues playing in the ProAm Golf Tournament to raise money for the proposed Center Of Excellence, and I am excited and impressed at the results and what this could mean for the future.

The idea of housing all the research and all the resources is not a new one. It can be highly successful when the people involved are willing to share information and acclaim equally. I certainly hope that this will be the case at the Ernie Els Center Of Excellence.

The Center Of Excellence will “focus on a global digital learning platform that will give children on the spectrum around the world access to best practices in education and therapy. It will also help connect the international autism community with best practices and the very latest information and research. This first of its kind Center will also have an on-site education facility, medical and professional services, research and transition to adulthood.”

Actually, while researching this article, I found another great golf tournament run be the Kresge’s Krew Foundation. The focus for distributing the funds raised by this tournament is different from that of the Ernie Els tournament. The Kresge’s Krew Foundation is “dedicated to creating awareness in the fight against autism while lending a helping hand to those without the means to receive the proper treatment and therapies. We want to give individuals with autism the best opportunity to achieve their greatest potential.” I urge you to check out this site and, if you’re a golfer, sign up to play in this tournament or one in your local area. Maybe you could even follow Ernie Els example and start your own tournament!