The Aspie Experience

Aspie's (people with a diagnosis of Asperger's Syndrome) are an amazing group of people. They can blow your mind with their wit and intelligence and, the very next minute, drive you to levels of frustration you never knew were possible!! I have the priviledge of sharing my home with an Aspie teen at the moment (not my son, but a friend who is staying with us for a while). This young man has gifts that my son will never have, but he also has challenges with independence and social skills that Sam has overcome. 

The individual skills and challenges that each person on the autism spectrum presents is truly fascinating. I always say that the "I" in IEP must have been specifically designed for "individuals" with Autism. Each and every IEP I have ever worked on have been a truly individual design. The goals and objective, the assessments are all unique, and the ways we all come up with on how to achieve these milestones are just as unique.

This can make the IEP process confusing for parents who assume that everyone gets the same as everyone else. But, as the experienced IEP team members know, that's not the case. And that fact has both positives and negatives to it - the positive is that no 2 kids are alike so it would be disastrous to start treating them in a cookie cutter fashion; the negative is that some kids end up with a "Cadillac" level of service whle others get a whole lot less.

Don't stress out about every detail in an IEP - focus on creating supportive relationships with the people who work with your child. It's amazing how far a kind word will go. Balance that with sane and honest meetings and comments, and you've got the basis of a wonderful educational experience, no matter how the IEP is worded.

Getting Back To Work

I guess summer is truly over! I'm getting calls from new and old clients and I'm getting ready to attend some of the local support meetings. It's always such a treat to meet people I've worked with over the years, to keep in touch so that I can help whenever needed. But what is even more thrilling is to hear how people put what I teach them into action so that they not only don't need me but they don't need any advocate, let alone an attorney! That's when I know I've truly done my job.

Well, I got my daughter off to college this summer. Wow, it was a LOT harder that I expected! I still am surprised at how much I miss her. Luckily, she's just up in LA but next year her goal is to go to the sister campus in New York. Now that will be a challenge for us all! Other family news is from home (Australia). Both my parents are having some serious health issues, and the matriarch of the family, Aunty Pat, has inoperable throat cancer. They say things happen in 3's, so hopefully we're all done for a while.

I'm working on the concept of a webinar, one directed at parents and one for teachers. Perhaps even a series of webinars to that we can delve deeply into various topics. I'll let you know when all is set!

Training Teachers

I have had the priviledge of attending one of the best conferences in the past 20 odd years. It was in Sedona, NV by a group called Center for Teacher Effectiveness (www.timetoteach.com). The integrity of the whole group and the solid strategies and techniques that they have practiced and improved not only make sense but there is solid date behind them to show that they work.

So, I am now proud to say that I am a certified trainer for Time To Teach and I will be sending out proposals to conferences and school districts offering to come and instruct the staff on these techniques so that they do indeed have more "time to teach"!! Additionally, I will be offering to present a seminar that I have successfully offered to parents, professionals and teachers for the past few years here in southern California, teaching everyone how to make an IEP meeting successful and productive.

My advocacy is based upon the fact that IEP meetings can be wonderful experiences and that most kids can benefit tremendously from the special education services in public schools. There are, naturally, a lot of different factors to put into place and to arrange successfully, but it certainly can be done. My success rate speaks for itself. I end up with happy parents who now feel they are part of the IEP team and that their child is making progress, and they are in sync with the IEP team and teachers (and vice versa).

The Time To Teach program also has this philosophy - that working together a class can change it's behavior and can indeed learn and progress - and it's a painless process!! I look forward to telling you more in later blogs.

I hope your summer has been successful and productive (and relaxing too!)

Frustrations!

I need to start this entry by affirming to you that I do indeed LOVE my children, but there are times when I am ready to simply pack it all in and run away. How can these fabulous people drive me so insane???

I sat with one of my good friends yesterday (Gayley) and we both lamented about the complicated relationship we have with our kids and how it is STILL so complicated even though our kids are older. Surely it is supposed to get easier at some point???

No, it doesn't get easier - it just changes and the challenges evolve. And we also had to change and evolve to even have a chance to keep up. Sigh....it gets tiring. But that's where good friends come into the picture.

Most of my friends are involved in Autism in some way or another - most are parents but I also have a smattering of various professionals. All are wonderful sources of strength and support - the hardest lesson I had to learn was to actually ask for help. I still seem to forget sometimes that I have people to learn on. I let the feeling of "being alone" take over my life. And I suffer and so do my kids. Thankfully, I somehow crawl out of that place and start to talk to my friends and, without exception, they help me find my way back. And that's where I am today - crawling out of my hole, trying to breathe and relax and enjoy my children again.

Tomorrow will be a better day - how many times have I said that to myself? Actually, I have the following quote pinned to the wall by my bed (i just need to read it more often) -

"Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says "I will try again tomorrow" .

Take the time to attend as many parent support meetings as you can, and reach out to people at those meetings. Introduce yourself - if you're too shy then privately ask the meeting leader to introduce you to people who might have similar situations. Believe me, this is no time to sit back and just observe! Get out there and talk to people. I have found that by approaching people to ask for help I have been rewarded. People truly want to help, they just don't always know how and if you can help them with the how you will be amazed at the positive response you will get. And you may even find a friend!

Our Children's Future

I am fortunate to continually meet and work with families who have many different challenges due to disabilities. The majority of my clients are on the autism spectrum - I guess that's just a sign of the times. When we first meet, my goal is to listen. I need as much information as I can get about the whole family and what is going on, not simply about the child with autism. Afterall, as I see it, my job is not to fix the autism, but to help the "team" be able to work more effectively so that everyone feels supported. Focusing just on school, or home is pointless - the child doesn't exist in only one place!

The most important exercise I give my families to do is actually a written assignment (yes, I give out homework!). I ask the parents to do something that they have not done since the diagnosis was handed down - I ask them to dream of a future for their child.

When I first tried to complete this exercise myself many years ago it opened the floodgates of emotion that I had tried so hard to squelch in order to just be able to function and get through my day. And I cursed the person who first came up with this cruel exercise - didn't I already have enough to do and wasn't I already in enough pain??? But I think what really shocked and scared me most was realizing that I actually didn't have ANY dreams for my son - every dream I'd ever had for him had disappeared (actually exploded) when he was diagnosed. And, most heartbreakingly, no one had ever, ever, EVER encouraged me to dream again. Instead, I was trained to think only for the moment or the very short term. I still had dreams and plans for my other younger children, but none for Sam. That was so unfair. So, I put my feelings aside and began this exercise.

Start by dreaming of how you would like your child's life to be when he/she is 25 years old. Think of relationships (romantic, family, friends etc.), education, lifestyle, life skills, jobs - anything you can think of.

Then, work your way BACKWARDS! Dream of your child's life at age 21 - what needs to be in place in order for the "age 25" dream to become a reality? Then, dream of age 18 and do the same thing. Continue to work your way backwards using whatever intervals you like (1 year, or 2) until you reach your child's current age. You have now made a blueprint for everyone to follow to take your child from his/her current state to your dream.

Now, your dream will probably change over the years as some skills are learned more quickly and some don't! That's fine - we need to be flexible. But with out a plan, without direction, without that life dream, our kids are doomed. Teachers/therapists etc. are only concerned with the short term - for the amount of time that they will actually be involved with this "case". But parents MUST think in terms of lifetimes. It is our responsiblity to bring these dreams to each and every meeting and drag the rest of the team in that direction (sometimes kicking and screaming all the way). No one else will dream for our children. Take back one of your most important parental roles and dream for the future of your child.

Research programs etc.

This past week my son, Sam, has participated in yet another research program in our local area. Over the years, we have been interviewed numerous times on a wide variety of topics relating to autism. Sam had patiently agreed to have MRI's and brain scans done, usually with the help of friendly researchers and video games. Usually, he is paid for his participation and he always LOVES that part!

This week, he had another brain scan and MRI - this time they are looking at how the 2 sides of the brain send information back and forth. Also, we had researchers come to our home yesterday to interview us on our views of the transition process from school to adulthood (which, in case anyone is interested, is pathetic - I don't care where you are, what district, whether or not you hire an advocate or attorney, the resources simply do not exist to do anything but a lousy job. There are people working hard to help, but they are given no money or support to do more than the basics, if that.

Anyway, back to the testing - I would recommend that you look into allowing your child/children or even yourself to be part of as many tests as possible. Occasionally, you will be given a report that can open yet another door of understanding of how your child sees the world. But, more importantly, you will be doing your part to help the future of all people affected by autism.

More Training!

I am trying to work out what conference I want to attend this summer. Usually, I attend one in Hawaii (afterall, if I'm going to spend time and money AND be away from my kids I may as well be in paradise!) but this year I'm thinking of heading to Sedona.

Yes, I know it will be HOTTER THAN HOT but this conference will be very hands on training, and I always enjoy learning more practical skills. I don't get many chances to use them in a classroom setting but I find it invaluable to be able to give real advice to teachers who may be struggling in their classrooms, not only with the behaviors of my client but also others - I rarely find a classroom that has only ONE problem child!!

I see my role as an advocate as one where I help the whole team to the best of my ability. I try to find ways to give the parents the support they need, I try to determine how the whole IEP team can best meet the needs of the kids, and that includes the teachers AND administrators! I don't leave anyone out of my analysis or my suggestions for improvement. So, taking the time to learn new and better educational and disciplinary techniques is something I not only enjoy but it is of great benefit to my clients.

Not many advocates work this way. But I want to be able to leave my clients with an IEP team that actually works together and includes the parents. So I am very careful to build bridges, and not destroy them. Afterall, this team will be together long after I am gone and they may as well work well with each other.

Another student in an appropriate placement!

I had GREAT news yesterday! One of my families finally got word from the District that FAPE would be offered at the non-public school we had chosen! the family is ecstatic - they have worked long and hard for this moment and I was so very thrilled to be a part of their lives.

One of the best parts of my job is the satisfaction I get from helping families better their lives. I am always telling my clients that the disability doesn't just affect the child, it affects the whole family and it is that pressing need that I bring to my advocacy.

I am NOT your usual, "run-of-the-mill" advocate. I do not ever profess to be an expert in Special Education Law nor can I produce magic data from the thousands of reports I have read. Instead, I bring common sense and logic to an emotionally charged atmosphere. I am trained in mediation, not confrontation, and I have honed those skills (though, why I can't seem to bring them to the forefront in my personal relationships is beyond me!). In the IEP meeting, I work hard to bring the team together either to produce a fabulous working document and team, or to ensure that everyone is in agreement that a more appropriate placement is in order.

It is vital to me that the parents I work with and, yes, train are better equipped to deal with the stress in their lives, not only the stress from the school but in every area. I see no point in pouring hard earned dollars into countless IEP meetings when there is no possible way for the family to be supported at home. So, while I am indeed called in to work almost exclusively on educational issues, I often find that this is only part of the problem. I am so very grateful that I have had the opportunity over the years to work for a number of support agencies and support people who helped me to look at the people first, not the "problem". This approach has served me, and my clients, very well over the years and I look forward to continuing this journey.

Lazy Summer Days

School is finally over! Well, maybe not for all of us as some of our kids are attending summer school. Honestly, I don't think I'd have stayed sane if it weren't for school and summer school!! don't get me wrong, I love my kids, but I also very much enjoyed being able to breathe for a while and school provided that period of respite. Those days are pretty much gone for me - my eldest (Sam) and his sister (Lucy) are now graduates. And my youngest (Mac) is being homeschooled. But I continue to try and find some time for myself.

Summer does provide a break from my work as an educational consultant and advocate. Most of my clients are on the autism spectum and that really is my area of expertise. But I very much enjoy meeting clients who are facing other challenges and being able to help certainly warms my soul!

But, as the saying goes, "no rest for the wicked". This summer, I'm helping a few clients who have unresolved IEP/placement issues, I'm working on my webpage (http://www.merrynaffleck.com), and I'm putting together my next project - a series of webinars designed to help give parents some training and confidence to be better advocates for their kids. So, stay tuned and I'll let you know the progress and how you can attend my webinars.

In the meantime, enjoy the summer!! Have fun, smile, relax with your kids. Trust me - the time disappears faster than you think possible.

Cheers

Merryn Affleck