First of all let me just tell you that there ain't no miracle here!!!! I don't care what you read or see on TV... it's just not true!!! There, that's off my chest.
With that said, here's where we are...
Although it gave us false hope of a miracle cure through therapy and diet, it did provide us with a basis for a means of teaching Jack how to learn and participate in our world
Latest News (1/28/06) Jack has been potty trained since this past summer - an intense A.B.A. based approach with significant rewards and repetition got Jack over the hurdle of using the potty regularly. He tells that he has to go to the potty by showing us his "potty card", a small key chain he wears on a belt-loop with a picture of the toilet. Other than a few minor regressions along the way, Jack is fully potty trained!!!!
Jack has started Kindergarten. While still receiving home based therapies in the afternoon and on weekends, he is attending school daily where he receives 1-1 therapy, speech (daily) and OT along with all the typical group activities you'd find in kindergarten.
Jack's bio-medical treatments are very extensive and demonstrating real positive impacts.
A.B.A. Therapy: - This is the primary focus of Jack's therapy. In simple terms, this is an extreme behavior modification program that was developed in the late 80's by a Dr. Ivar Lovaas at U.C.L.A. This link gives you a good overview: http://www.isn.net/~jypsy/aba.htm
Jack was receiving about 34 hours a week of this type of therapy in our home prior to his starting school. The number of hours are dropping somewhat but the general approach is not. We have this therapy going 7 days a week, led by the team of Sara Hult and Keith Amerson who come to us through Tri-State Learning based in New Rochelle. Sara has been with us since the summer of 04 and Keith joined the team recently when Sara switched practices to Tri-State. We are working with Jack's school to make sure Jack's progress has continuity as he goes to kindergarten
The rest of the behavioral therapy team is made up of 4 amazing women who have become true members of our family. You can learn all about them on the Team Jack! page. These women work with Toni all week and track every bit of progress on every detailed program we work on. We LOVE THEM ALL!!!!
Jack is continuing to progress in this home based program better than ever. His receptive language has improved dramatically as well as his overall awareness of the world. We are now actively generalizing tasks that he has learned academically into his day to day life.
From the spring of 02 to the summer of 03, Jack was also primarily home schooled working with teams from Douglas Developmenter at Rutgers University, and with a team led by the consulting team of Dr. Vincent Carbone (www.drcarbone.net). Great therapists such as Lisa Sharkey, Mark Rogers and Rita Scheer all gave us great support.
GFCF Diet: A surprisingly high percentage of children with autism also have celiac disease (intolerance of wheat) and/or other intolerances to specific foods. GFCF refers to Gluten Free and Casein Free. Gluten is wheat protein and Casein is a dairy protein. A doctor at UMDNJ's Autism Center also informed us that Soy Protein is very similar to Casein and therefore a high percentage of people with an intolerance to dairy, have the same intolerance to soy.
As Jack's disorder took shape, Jack's sleep patterns were very disturbed. At least 3 nights a week, Jack would wake up for no apparent reason and simple babble for up to 3 hours. We found that a removal of Dairy immediately led to a sleep improvement. Removal of Soy, improved his sleep even further. Of course a well-rested Jack, is a better behaved Jack, not to mention his parents. To this day, Jack is Dairy and Soy Free!!! We drastically limit his intake of processed foods and sugars, too much of which cause sleep disturbances and general poor behavior.
On several occasions we also removed wheat completely, but saw no general improvement and we readily give Jack wheat today. But finding bread that doesn't have dairy or soy protein is a challenge. Thank you Thomas's Mini-Bagels! We find the best way to ensure that we limit dairy, is to keep Jack on mostly a Pareve diet. So I guess God is happy too :-)
Jack continues to live a dairy and soy free life and we have done an even more intense job of managing his intake sugars and specific fruits Jack's constipation has improved dramatically over the past 6 - 8 months. We are about to embark on some very detailed blood tests to determine the specifics of his food intolerances.
Medication: Jack is diagnosed as ADHD (attention deficit hyperactivity disorder)... (in case autism, apraxia, and sensory integration disorder wasn't enough)... In order to control his hyperactivity and to improve attention, Jack is taking a daily dose of Adderall XR. Jack is also taking a very low dose of Zoloft each morning to control his frustrations and his obsessive behaviors. We credit the Zoloft with a general improvement in Jack's tolerance for the world around him and even his constipation. We are also in the midst of weening Jack off of laxatives to maintain his regularity. He has been on Miralax for the past 18 months.
Allergy Treatment: Unlike his brother, sister, mother and father, Jack, for some unknown reason has a number of allergies. These allergies were quite often confused for ongoing sinus infections, until we prescribed Zyrtec and ultimately had Jack tested. Jack is allergic to mold, trees, grasses, etc. and without his daily doses of Singulaire, Zyrtec and Nasonex, Jack is perpetually congested.
D.A.N. protocol: D.A.N. stands for Defeat Autism Now
(http://www.autismwebsite.com/ari/). Basically this is a protocol driven by the findings of the book by McCandless mentioned under the GFCF Diet. The basis is a strict diet along with large doses of vitamins, minerals and nutritional supplements. For about 9 months we worked on this protocol, under the guidance of Peta Cohen (a D.A.N. Nutritionist), with some improvement to his gut found. But the effort didn't prove worth the results. Jack at one point was needing to swallow upwards of 14 syringes of supplements a day and he was simply fighting us. I'm not saying that this protocol doesn't work, it just didn't work for Jack.
That said, the DAN protocol has started to penetrate traditional medical beliefs, where doctors just 2 years ago had limited knowledge or belief in the protocol are starting to understand the potential benefits and have taken the science much further.
As of the summer of 2005 Jack is re-entering the DAN protocol to a great extend under significant medical guidance. His bio-medical treatments include Methyl-B12 injections (now daily) along with Transdermal-DMSA detoxification and Transdermal-Glutathione treatments. These treatments are all based on the belief that Jack's body simply fails to eliminate toxins appropriately. For lack of a better term, Jack, and many other autistic people are toxic. It is believed that with prolonged use of these treatments, Jack's overall health will improve and the toxins affecting his neural pathways will clear. We have seen real improvements with these therapies, primarily with awareness, rate of skill acquisition, happiness, sleep, comfort in his surroundings and general life skills.
Much of the DAN protocol belief is based upon the theory of thimerosal or mercury poisoning leading to the autism epidemic. What we are seeing with Jack is that latest tests are showing that Jack is eliminiating massive amounts of lead through his urine since we started this protocol. This makes sense since DMSA is used as a lead poisoning treatment. We are about to do a challenge test to see if we can get him to excrete mercury as well through a detoxifying medication known as DMPS. This all goes back to the theory that Jack can't self-detoxify, he needs assistance, and until we get his body healthy, his neurological improvement will be very difficult.
Speech Therapy: Jack receives one on one Speech Therapy at school daily and gets 2 additional hours a week from Lynn's Speech Center in Marlboro, NJ. Jack's greatest challenge is speech. Because, Jack has a diagnosis of Apraxia, along with Autism, Jack has little control over his ability to imitate language. He will at times speak in bursts, but it is limited and comes in bursts.
Jack's speech therapy has gone better than ever before, with the consistency provided by Lynn and Lori. Jack's favorite words are "cookie (boo-kie)", chip (dip), and pretzel (peh-ple), and for the first time ever, Jack has been able to switch back and forth between those words while requesting. In addition we're hearing more and more 3 word sentences such as "want more cookie". And don't be surprised to hear Jack yell "Go Away" if he wants to be left alone.
Occupational Therapy: Jack gets 2 hours of one on one O.T. at school each week. We are transitioning from his private O.T., Tender Touch in Red Bank, NJ. His therapist, Terry Moser has been with us since the beginning and she is an expert in treating sensory integration disorder.
Physical Therapy: Jack used to go for 1 hour of Physical Therapy per week with Carolyn Young in Red Bank. Carrie was with Jack from the start and has helped Jack tremendously with his upper body strength and use of his muscles for every day living. Jack excelled in this area and no longer needs physical therapy. Instead Jack goes to a weekly My Gym class for children with Special Needs, where he excels.
Sign language: does help many children to eventually vocalize, but like everything else we have tried with Jack we have found no easy answers. There is no one sure way of doing things with Jack. Just because it worked for someone else does not mean it would work for us.
P.E.C.S: Most recently Jack has started using the Picture Exchange Communication System (P.E.C.S.) in order to improve his interactive communication skills. As he continues to struggle with consistent speech, we have decided to alleviate any frustration by providing Jack with a picture representation of his most common requested items. Pictures range from foods to toys to pictures of the swimming pool and swingset outside. For more information about P.E.C.S. click here.
