The following are methods we chose NOT to try. This doesn’t mean that EVERYONE should avoid it. It only means that we looked at Lukas, looked at his physical health and particular issues, and determined that this is a method that we should not try. Some it is because Lukas never indicated a medical need for it, some of it is because I was not convinced of the safety or the medical research supporting it. Again, this is not to say that these methods are wrong for your child, it just wasn’t right for Lukas:

Secretin: When secretin hit the news, it was big. I knew parents who were running around trying to get a doctor who could get their hands on it. Some parents scrounged for money. I think that if I knew about secretin on the day my son was diagnosed, I might have been one of those parents. Secretin has been used for many years for patients who have chronic diarrhea issues. I think that some parents who report improvement had children who had chronic diarrhea. For us, the chronic diarrhea was due to dietary issues like celiacs disease rather than a lack of secretin. I know some parents who have done secretin but they were unable to tell me if it really helped. They said that they “thought they saw more alertness”. It was certainly not concrete proof of help. I do know someone who was able to give me something concrete: he had normal bowel movements for the first time in his life and he stopped losing weight. For that parent, I would say secretin might be a good choice. Our specialist is also highly opposed to secretin and that partially influenced our decision against it. Money was another influence- we didn’t have any! Plus, we had started ABA and NIDS and I didn’t feel like we could get an objective enough baseline for whether or not secretin would work. For more information, here are some links on secretin:

Links on secretin:

http://www.autism.com/ari/secretin2.html

http://www.paulbunyan.net/users/shannon/autism/secretin.htm

http://www.inetplus.net/~autism/secretin.html

One link against secretin:

http://www.neuroimmunedr.com/Articles/Autism___PDD/Secretin/secretin.html

http://www.quackwatch.com/04ConsumerEducation/News/secretin.html

other personal experiences with Secretin:

http://hometown.aol.com/A1a2ana3/index4.html - a diary of children using secretin

RITALIN This drug has helped many children with severe ADHD. The problem that no one wants to discuss is that Ritalin is also not good for some children. Our neighbours child developed severe tics while on it. I know other children who used to have total meltdowns in the afternoon on it. Our specialist does not prescribe Ritalin. Ritalin works by reducing blood flow to certain regions of the brain. Since we have not had a neurospect scan done on our child, we wouldn’t know if we were reducing blood flow to parts of Lukas’ brain that might be in need of more blood flow! I have heard that Ritalin’s effect on the brain is actually stronger than cocaine’s. Another concern was, Lukas’ language problems indicate a problem. What if we divert blood flow from the language centres? Again, I restate that I do know many parents who say that they love Ritalin and it helped their child. Perhaps, it did so because their child had too much blood flow to certain regions of the brain and Ritalin slowed that blood flow. Lukas also wasn’t so dysfunctional because of his hyperactivity. If the teacher was reinforcing and the subject was taught in a true kinesthetic manner, Lukas was there! Why should we drug Lukas to fit the teaching style of a person rather than the teacher alter her teaching style to help Lukas? Perhaps if “teaching to the multiple intelligences” was actually done rather than a new educational buzzword, we wouldn’t have to drug our children. I have heard that up to 30% of children do not respond well to Ritalin.

Articles Specific to NIDS patients and Ritalin

http://www.neuroimmunedr.com/Articles/ADHD___ADD/adhd___add.html

http://www.breggin.com/ritalin.html

http://www.concerta.net/

http://www.nida.nih.gov/Infofax/ritalin.html

http://www.ritalindeath.com/

http://www.mentalhealth.com/drug/p30-r03.html

Rehabilitative Therapies

Floortime- I read the book “Special Needs Child” by Stanley Greenspan. You can purchase the book through Amazon.com. It isn’t a bad book and it is interesting to read. He also has some good suggestions on techniques for encouraging choices and play. I even used a few of his tricks. However, being connected was not a problem that Lukas had. Lukas needed to learn functional skills and language. I just didn’t see how floortime could address Lukas’ particular needs. I also admit that I needed some concrete outcome studies, which I still feel Floortime lacks. Do I think that floortime is completely useless? No. I just chose not to use it with Lukas, especially when ABA directly addressed Lukas’ needs. I know a few people who feel that they needed floortime and if I had been in their shoes with their child, I might have gone that way too (I am thinking about the child who is so disconnected that he doesn’t care and is not reinforced by virtually anything. Perhaps those parents did need to work on joint attention.)

Special Education Classroom in Our School District: The district never offered any concrete program for us. They didn’t have any outcome studies or proof that their methodology produced favorable outcomes. Now, I know that some reading the floortime comments above and this comment here will remind me that children are not outcome studies. I agree but I still felt like I wanted a proven method that showed real gains, not artificial gains under a low expectation IEP with goals that were not measurable. I just was not comfortable with the programming that our district had to offer nor do I believe that they had “experts in autism”. Their resumes didn’t fit. Additionally, having had numerous tutors go through the special education programs at our local university, I was shocked to learn how little honest, clinical training they received in both autism and ABA. One tutor had less than half a class session on autism and yet, the very next year would likely be in a classroom with an autistic child. The district would most likely push this teacher as being capable of dealing with autism. Her degree alone did not qualify her.

TEACCH: What can I say? I don’t like their general philosophy. Please read Dr. Ivar Lovaas’ comments at http://www.feat.org/lovaas That said, for some children,

TEACCH may be beneficial- especially if the child has a severe learning disability.

However, I don’t care for the way they teach language. I am very happy that we were not in a district that had adopted TEACCH as TEACCH is often used as a way to deny ABA services to families.