What Worked for Us
Here's an account of all the stuff we've tried in the 10 years since my son was diagnosed with PDD, later Autism. Here's a little "nutshell" account of it, so you can get a sense of the progression:
Chronology:
1996 Diagnosed PDD-NOS "mild to moderate" by a neurologist in St. Petersberg, Florida
1996-8 Placed in a mixed exceptionalities special day class in Sarasota, FL
1996 We started him on high-B6 vitamins, the first thing that helped
1997 We started our own ABA program 20 hrs/wk
1998 We moved across the country back to California
1998 He started regular kindergarten with an aide and lots of help
1999 We started doing biomedical treatment
1999 Re-diagnosed with Autistic Disorder, by Dr. Linda Lotspeich at Stanford
2000 We stopped doing ABA
2000 We started chelating him for mercury and lead, as patients of Dr. Amy Holmes
2005 He completed 6th grade successfully at a regular middle school, still with an aide
2005 Level of heavy metals far less (still doing some treatment for this)
2005 Homeschooled for 7th grade, because he was ready for more independence than the school is able to give him, but still behind in some subjects. Made tremendous academic progress.
2006 Started taking the city bus by himself sometimes
2006 Learned his times tables - finally!
I'm going to separate the three fronts of the 'war':
1. Biomedical
2. Educational
3. Behavioral
I'll try to give you links, in case you want to learn more about anything. In the early days, I feel that ABA (Applied Behavior Analysis) was the most useful thing we found to help keep his behavior under control early on, but in the past 6 years, Biomedical has been more fruitful for us in keeping his behavior good and manageable than all the little behavioral techniques and plans and structures that the regular education school folks tried to do to "manage" his behavior. So here goes:
Biomedical
B6/magnesium
The tried and true Rimland idea of giving high vitamin B6 and magnesium was the second thing we tried (after the gfcf diet, which wasn't very useful, for us at least). We started out using Super Nu Thera from Kirkmans, and then after a few years, found the superior Brainchild products, and switched to these. Super Nu Thera at age 3 made my son stop banging his head, and start trying to talk to us. It was the first thing we ever tried that helped, and it was wonderful. Brainchild supplements at age 6 kept those gains, and helped him to pay attention to more things around him and allowed him to accept change much more easily. With Brainchild, we also didn't see the 'jittery' effect of too much B6, but kept the alertness that it gave him. Fair disclaimer: I work for Brainchild now (sinc my son was 10) and now you can understand why!
Healing the Gut
This is the first part of the DAN protocol, which we follow, but not exclusively as you'll see. Healing the gut involves running some tests: digestive stool analysis, organic acids, fatty acids test, allergy testing. And then doing what makes sense from those tests, to try to get candida under control, clean out any parasites, and try to balance the imbalances you've found.
We started working on this when he was 5. He was a real 'gut' kid -- digestive testing looked awful, not much good bacteria, lots of candida, parasites, bad bacteria, etc. So we treated for all that. We have probably gone around that same bush at least 5 times, over the years, where we'd run another digestive or organic acids test and work on treating what we found. The thing is, once you start treating for heavy metals, the gut things sometimes get worse again, so you have to keep revisiting them. In the last couple years, we figured out that rotating natural antifungals (see journal entry on this under Biomedical) periodically to prevent bad bugs worked better than waiting until things got bad and doing prescription ones. Also found that TD-DMPS was much easier on his gut, so that was great (DMSA a few years ago really ripped it up). Our last organic acids looked darn close to normal, even after 8 months of TD-DMPS, which is something of a triumph. These days, we only have to rotate natural antifungals around 8 days every six weeks or so, when he starts looking yeasty (hysterical, 'out of control' giggles and/or a ring at his anus are yeast signs for us).
Allergy testing
Allergy testing, when we spent the $$$$ to do it, found him allergic to almost everything, food-wise. It's been one of my major campaigns to try to figure out how to ease that situation. Since restricting and rotating diets have not helped him at all, I concluded that his body was reacting so much because his gut was very leaky and was letting lots of food through the gut wall, and worked to improve it. For us, the most useful tools for gut healing have been the probiotics Primal Defense and Theralac, and Brainchild vitamins/minerals, Brainchild Intestimend, and l-Glutamine in small doses.
The DAN Protocol
I think the DAN protocol is a useful tool, but I don't think it has all the answers. In my opinion, it's really important to keep looking for more complete answers, and I think most of the good doctors out there would completely agree with this. This is one of my favorite things about our doctor, Dan Green, in Oregon, and a big reason I keep doing this long distance, because he's such a great partner in this way.
Educational
Preschool
Right after my son's first diagnosis of PDD (Pervasive Developmental Disorder) at age 35 months, the school system placed him in a mixed exceptionalitites public preschool. This was a class of 15 children, with no one-on-one attention or ABA offered. It wasn't a great learning environment for him, but might have helped him tolerate more around him, sensory-wise. In those days, he absolutely hated things like Halloween Parades, Assemblies, changes of routine, no matter how small. After a year in this preschool, we started our ABA program, which is what I really think of as his educational program during those years. See below for more about that.
Kindergarten
When he was 5, we moved across the country from Sarasota to Santa Cruz, California. He attended a county class for seriously autistic children, and at the end of the summer, I wrote a very long proposed IEP, and my district accepted it and placed my son in regular kindergarten, with a one on one aide, plus 10 hours a week of ABA. So he went to regular public school classes with a 1:1 aide, from kindergarten, through this past year (2004-5) when he finished sixth grade at a large middle school. Kindergarten was a struggle for him. He had to sit very close to his aide, and if she couldn't be there, he didn't go to school that day.
Although our experience has been pretty good, I feel that in general the public education system is not very well designed for children like my son. There have been a few teachers who 'got it' about what my son needed educationally, but they were the exception. Due to the extreme difficultiy of learning in a large-group environment, and the shortage of resources and training, my son is still considerably behind in his education. He was able to learn more in his later years of elementary school, because he's so much more able to learn than when he was younger, but if the system was somehow more flexible for those children who don't learn best in crowds, and more knowledgeable about high functioning autism, I feel that his public school educational experiences could have been more productive and left him with less ground to catch up. He made lots of progress when we homeschooled, but of course, the social opportunities were much fewer.
The Most Effective Educational Tools/Techniques we have found
One on one tutoring in math
Math is the area that took the longest to 'kick in' for us. One-on-one has been much more effective than any kind of group instruction for this. This year, in sixth grade, due to a scheduling fluke, my son was not scheduled into a group math class, so his relatively untrained aide tutored him in math, and we saw far more progress than previous years, when he'd been in small-group resource room math. What I learned from this is that just because a child can make some progress in the small group resource room environment, that doesn't mean it's the best way to teach them. He finally learned his times tables and lots of other math during the past year, when we taught it one-on-one in our homeschooling environment. He says that math is now his favorite subject, despite still being years behind grade level.
Consistent Writing Assignments
Repetition is our friend, when teaching these kids. Writing assignments that are the same, week after week, but where the specifics change each time, so that the child gets the rhythm of the writing, and can learn to do it independently. Our fourth grade teacher assigned the a a writing about a different child every week, with the same consistent paragraphs - "introduction", "likes/dislikes", "hobbies", "family", "pets", "conclusion". I highly encourage teachers to do these kinds of assignments for all students. This class was the most cohesive and inclusive of my son, and I think it's partly because of these socially-oriented assignments.
Social Skills Dyads in Speech Therapy
We worked with a lovely speech therapist who designed socially-oriented speech goals that involved my son playing turn taking games, "thinking about you" games, collaborative projects and finally, this year, debating points of view, with another student. A different student was involved in each session, and we saw these sessions have a positive effect on other students' interactions with my son, as well as his skills with other people. I think this technique could be taken further, with more time and resources than the public school system has, perhaps also using improvisational games and also videotaping, which I think is a particularly fabulous social skills tool for our kids.
Computer-based Teaching
The computer is a virtually perfect academic teaching tool for children with autism. It takes away all the "noise" of social expectations and sensory issues, and is consistent and visual and clear. Anywhere that we were able to find appropriate software to teach my son, this was tremendously effective. Obviously, children also need social skills work and time with other children, but my ideal school for kids like my son would combine computerized and one-on-one academic lessons, with recreational time, structured play and social skills sessions, and not try to teach them academics in a noisy, distracting classroom. Videos have also been a great educational tool.
On the Topic Of One-on-One Aides in the Regular ed Classroom
I just want to say something about one-on-one aides in the classroom. They are wonderful and terrible. Once your child is used to having one, and your teachers are used to one being there, weaning both the children and, sometimes, even more difficult, the teachers of that dependency is easier said than done. In my son's case, he was terribly dependent on his aide and could not have functioned without her in kindergarten. I can't quite point to when, but at some point in the next few years, it would have been ideal to have the option to put him in a small, structured classroom with knowledgeable teachers, where he could function without an aide, and nip that habit in the bud. Due to highly varying quality teachers, lack of teacher training, and just the general inadequacy of the public school system to meet these children's needs, we had no such option. This is sad. For a high functioning child, still having a one-on-one aide by the time they're in fourth or fifth grade is a big problem, in my opinion. By middle school and high school, not only is it a social kiss of death, but you're probably raising a highly dependent adult, unless you take drastic action.
My son has been homeschooled for a year now, using a computer-based curriculum. I've come to this decision because although he was successfully progressing in a regular classroom, he was ready and willing to start to study without an aide, but the school system was obviously without appropriate middle school placements with enough support for him to do so. The social opportunities for him are rapidly disappearing in the middle school environment, and he still has some academics to catch up, due to our 'lost years' earlier. I believe he will be able to work on his own at home more easily than he can in the overfull, underfunded middle school classes in our district. We will be enrolled in a public charter school, through Caliva http://www.caliva.org/, which uses the K12 computer-based curriculum http://www.k12.com/.
If I had it all to do over, I would still place him in kindergarten with an aide. But at some point between 1st and 4th grade, with a concerted cross-disciplinary effort, I think we could have transitioned him to working on his own without one. It might have taken a temporary placement in a smaller class designed for children who are struggling academically. It might have taken doing a grade over again, with a teacher and classroom aides who were very tuned in to him. All of this is lots of extra work for school personnel, and none of this, of course, was suggested by school administration or anyone who worked for them. Maybe my hindsight will give some of you ideas of what to start looking for at the younger ages. Some exceptional private schools might have been able to provide this extra support to transition to no aide, but I haven't found any that could or would where I live. Certainly, they have no natural motivation to do so, as they don't make any more money for teaching my son than for teaching a child who doesn't need all this extra staff and effort.
Behavioral
Applied Behavioral Analysis (ABA)
As you may be able to tell, ABA was very important and useful for us in the early years. When my guy was four years old, I finally started listening to people talking to me about ABA, and hired someone to train me, my husband and our nanny, to do therapy with my son. I was a little skeptical. ABA doesn't sound that nice on paper (like dog training), but it's very different in practice, and can be designed to fit the child's needs in many wonderful ways. We did ABA after school every day. Once we started it, my son started learning rapidly, and his behavior improved. He was much more in control of himself, and obviously proud of his accomplishments. We continued to do ABA after school and during the summers for over three years. At our IEP before kindergarten, I got the school to pay for 10 hrs a week, including a psychologist to supervise it. We paid for 5-10 more hours a week out of our own pocket, and also paid and used our Regional Center respite hours to keep it going all summer.
After the end of 2nd grade, the school refused to pay anymore. My son was starting to resist his therapist and his program, and our psychologist had some attitude problems, so it is clear in retrospect that it was a reasonable time to stop. It was personally very painful for me at the time, as it seemed like my best tools for reaching my son were being taken away. The fact is that when we stopped, he was able to learn and be a part of the world without the program, where before we started it, he was not. I think this is a reasonable criterion for when to stop ABA. ABA is a blessing and a curse. Like a 1:1 aide in school, it is an artificial structure and a crutch. A crutch is wonderful if you cannot walk without it. But once your muscles get stronger, they cannot grow properly while you're still using it. The sooner you can functionally discontinue ABA, the better chance the child has to be a part of the real world, in my opinion.
Other Behavioral Techniques
In the years since ABA, and even during it, I did find some other techniques that have helped. They are pretty conventional, but probably worth mentioning:
Visual Lists and Labels
In our house, there are several text lists and/or labels, computer printed clearly on cardstock, and laminated with contact paper and placed in strategic locations, most of which have been there for years now. What seems to work for my son is a clean, sans serif font, black, about 24 point text, and the lists are done with lines around each step, so they're a little bit visually separated, and have numbers. I use Microsoft Excel to make them. These lists do seem to help him stay organized. Even when he doesn't look at them, he seems to feel comforted that they're there, and seems to have 'recorded' them in his mind, so he follows the steps as written anyway.
Here are the ones that we've used for a long time:
Each of his drawers has a written sign about what's in that drawer ("Pants", "Shirts", "Socks and Underwear", etc.).
On the bathroom mirror is a list of bedtime steps
1. Wipe butt
2. Wash hands with soap
3. Dry hands
4. Brush teeth really well
On the wall in the shower is a list of showering steps
1. Get body and hair wet
2. Shampoo on hair
3. All Shampoo out of hair
4. Soap on body
5. Clean butt
6. Wash off soap
A new one, posted when he was 12, next to the sink in the bathroom where he gets ready in the morning:
GET READY
1. Deodorant
2. Wash hands
4. Wash face
3. Comb hair
5. Look in the mirror
READY FOR ANYTHING!
On the top of the washer and dryers are laminated a list of steps, and there are also sticky red stars on the washer and dryer dials showing how to set them right and tape with arrows showing which direction to turn the knobs (by way of explanation, we have a basket by the washer for white clothes that we all put white into. So the kids only wash their colored clothes):
on the washer.....
How to Wash Clothes
1. Put colored clothes into the washer.
2. Put in a capfull of All.
3. Push IN the big knob.
4. Turn the big knob to the red star.
5. Pull OUT the big knob.
6. Set the laundry timer for 35 minutes.
on the dryer....
How to Dry Clothes
1. Put wet clothes into the dryer.
2. Clean out the lint filter.
3. Turn the big knob to the red star.
4. Press the START button.
5. Set the laundry timer to 1 hour.
When the clothes are dry, take them
to your room and put them away!
Our First Year of Homeschooling... the best tools I found
Software - Inspiration
http://www.multiplication.com/memorize_in_minutes.htm
This software is a great tool for making visual webs and other kinds of structures, to break things down into logical pieces or visual images. I used it to make visual versions of all our history and science chapters, and to make writing webs to help him do some of our composition assignments, where would type the words right into the boxes, then print out the diagram in outline form, and use it as a base to write from. Very reasonably priced software, highly recommended.
K12 Curriculum
www.k12.com
This is the curriculum used by our homeschool. I like it a lot. It's very logical and thorough. I've still had to add lots of things to help him 'get' things, but I find this curriculum a very good base to work from.
Book - Memorize in Minutes: The Times Tables
http://www.multiplication.com/memorize_in_minutes.htm
This is a visual method to help memorize the times tables. It uses pictures and humor to help kids remember the facts. I think it's great, and it sure helped us get over a huge problem with multiplication and motivation. Once he had a rudimentary way to remember his times tables, we were able to start sidling up to division and more advanced types of math, which made me so happy - I wasn't sure how we were going to get there, but I never doubted that he was capable of it. His resource teacher in 6th grade told me he didn't think Zane would ever learn the times tables. Doncha hate it when teachers try to sell your kid short?
It looks like we'll be homeschooling again for 8th grade, so I'm sure we have lots more adventures ahead soon.
more to come...
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