Seeking Healing for a Non-Responder
I am mom to a beautiful, intelligent, curious, engaging little boy who just happens to be severely affected by autism. For five years we have been working toward recovery for our boy through educational and biomedical therapies. It has been a grueling and often heart-breaking journey as we have tried therapy after therapy and seen small or no gains. There have been times, many times, when I just wanted to give up. I struggled with what it would look like to accept my son's abilities as they were and not pushing forward with more treatments that we really couldn't afford emotionally or financially. But at the end of that struggle and with renewed determination and hope we have chosen over and over again to pursue new treatments for our son, hoping that the next thing will be THE thing.
No one therapy has be THE thing. My precious boy is still non-verbal, still engages in self-stimmulatory and self-injurious behaviors, still has major sensory issues; but little by little we are seeing growth. Our most recent therapy has shown some wonderful small gains that are stacking up to be larger gains. We are seeing social and intellectual growth in him that is so exciting. And we are seeing a light in our boys' eyes that has been absent for a long time. I am hopeful that there will be further growth over time and I have less fear for his future.
It's hard at times to be a part of groups such as Autism One and to hear amazing stories of recovery when your own child is not responding similarly to the same treatments. You are so happy that other families are coming out of the darkness, but feel jealousy, confusion and sorrow that your child is not responding as well. You question why the same treatments are not working for your child. I encourage other parents of non-responders to hang in there and continue to seek the best for your kiddos. My son may never be fully recovered, but I do believe that all we have done has brought him greater healing and improved his life and the life of our family. I will press on to bring him as much healing as is possible.
- Jenn Pedersen's blog
- Login or register to post comments
hello jenn
hi
I m from turkey.did you heard about handle instutie or brain balance center.they have more holistic approches and drug free methods.one day I would like to try them to my son..my son is PDD-NOS and right now he is using medicine called risperdal..I m worrying about him because he is using this medication.but other wise he is doing his handflapping allday.recently I have read disconnected kids and the fabric of autism by judith bluestone.the ideas looks to me very scientific and logical.sorry for my english.I hope your son will be better.
the under responders club!
Non Responders...well under responders is more like it. I think sometimes these kids have something more going on than a cookie cutter approach can handle. Sometimes there is multiple and chronic underlying infections that haven't been tapped into.
Some resources for your viewing enjoyment
www.liafoundation.com
www.thriiive.com
www.beyondbiomedical.com
Beyond Biomedical is a small group but we hope to get it up and online viewing for everyone across the world and we know it will be outside the box resources for our under responders!
Kristie
mommy to a beautiful and perfect under responder as well Aidan James
Hello Jenn, I'm from Brazil,
Hello Jenn,
I'm from Brazil, my English is poor, so I use the translator of google.
My boy is 2 years and 7 months, called DAVID.
In the search for treatments and responses, we like the method of the son-rise, found the site in Portuguese www.inspiradospeloautismo.com.br, but is based on an American program.
You know this method?
It has references, whether good or bad?
Will start in the next days the DAN protocol. In Brazil we have only a few doctors who follow this protocol.
We expect and hope to one day read your story of victory with your child.
Hugs.
Rogerio Fabian Iwankiw, Cuiabá-MT-Brazil
Hold onto Hope
Thanks for your response to my blog post. You are so new to the autism journey - I hope you will be able to find the right combination of treatments for your son. I've heard good things about the Son-rise program - we have used a verbal behavior therapy program for our son and seen some good progress with that. I think the key is the one-to-one intervention, so I believe both of these programs are beneficial for kiddos with autism. I'm so glad you are getting plugged into groups like DAN and Autism One - they are great resources that I relied on heavily when my son was first diagnosed and still gain much knowledge from even 5 years into this journey. I hope also to read one day of the story of victory for your child.
God Bless!
Jenn
totally understand
Jenn,
We've been doing biomed for 6 years and our son is also considered a "nonresponder." The list of supplements, treatments, and therapies is extremely long. However, we continue to see progress, albeit baby steps. We have always been cautiously hopeful when starting something new as the disappointment and sadness of hopes lost is just too hard to take. We are currently involved in nutrigenomics, by Dr Amy Yasko. We had some nutrigenomic testing which has showed us exactly where in the methylation cycle our son is "clogged" so now we are even more specific with supplements and the balance of what we are giving him. We have seen some positive things since starting this...language seems to be coming a bit quicker, teachers state he is more "with it" and involved in what goes on around him. We feel we're on the right track with better direction after having the nutrigenomic testing done. We have tried everything, believe me, everything! We have HBOT and IVIG waiting on the dockit of things to try next, as well as neurfeedback which has shown some great things with our kids. But again, we are cautiously optimistic to try these things.
So, keep the faith and know that you are not alone! We will never give up on our kids as they are worth so much and deserve the chance to be the best they can be.
Stay strong!
Daina
Thanks for sharing your story
Thanks for sharing your story Daina - it's great to meet other parents who are sticking with it even though their child is a non-responder also. Our most recent treatment that we are seeing good results from is HBOT - we went in May and are continuing to see growth in our boy even now. We hope to do another set of 40 treatments in 2010. I have not done much research into IVIG - but have heard promising things about it. We are between DAN docs right now as ours moved and we're on a waiting list to get in with a new one. I'm hopeful that the new DAN doc who has been highly recommended will have some new suggestions for us to try.
I hope you continue to see those baby steps that add up to larger steps as time goes by!
God Bless!
Jenn
IVIG
Daina and Jenn,
Ed's son really benefitted from the IVIG that was done when he was younger. We recently started with my son, primarily looking for gut/immune and global improvement, and I have already had some "wows" in verbalization. I know children for whom this was a major factor in their recovery, verbalization, or seizure status. Lab testing will not necessarily predict accurately whether it will help a child; but lab testing should be done to make sure that it is not medically risky. This is a significant intervention that requires consultation with a physician(s).
Best wishes,
Teri
Thanks, Teri! A while back
Thanks, Teri! A while back when I put out the question regarding IVIG and what others have experienced with it, Ed responded with the story of how it helped his son. I think we will try IVIG first, before HBOT, but the cost is holding us back for now. Our DAN doctor is out of state and does not bill insurance since most insurances don't cover much of this stuff anyway. I need to check out is our title 19 would cover it, even though it's out of state. I"m sure there will be a mountain of paperwork involved! Anyway, thanks again for your response. I always remind myself that we are on a journey, a marathon of sorts and not a sprint. We've always seen the baby steps but they're going in the right direction so we are grateful for that and feel blessed. My son is the most loving 10 year old boy around and we know he's "in there" just waiting for us to find the right combination of things to help get him out!
Daina
Congratulations, Jenn!
Jenn, good for you for hanging in there. I know that it's a rollercoaster. Ed and I have two boys: my little guy is a tough cookie, and Ed's son, who is a teen, is doing very well. My son has tried many interventions, with few interventions giving us a "wow." I have interviewed many moms, asking what has helped their child recover and what has caused side effects. Some have used many things where almost everything helped and nothing was problematic. Many have seen benefits from interventions where that was not the case for us. While I wish my son's situation had been easier so that he could function more fully and comfortably and that he didn't still have so much to work through, I will always make information available to the community of what has helped other children when done in a safe manner with appropriate medical monitoring.
My friend's son really began communicating at 14 years old through Rapid Prompting Method, and now he has been on MTV, accepted an award, and will be writing a magazine article. Dr. Harry Schneider helped a nonverbal individual begin at 22 years old. And so on. There are many stories like this.
Our tough cookies will spur doctors and researchers forward to new discoveries.
Accepting our children AND helping any underlying physiological dysfunctions are not two mutually exclusive things. Even parents of "neurotypical" children feed them and engage them in cognitive and motor activities and healthful practices to help them be the best that they can be.
Congratulations on the light in your son's eyes!
Thanks for your Comment
Thanks Teri for responding to my blog. I'm amazed by all that you and Ed do! Thank you for all your work on behalf of our kids. It's great to hear stories of kiddos make great progress even at older ages. After my son turned 5 I went through a really rough time. We had done intensive ABA and biomedical since his diagnosis at 2 1/2 and seen some progress, but he was still on the severe end of the spectrum. I was hearing so much about the importance of hitting therapies hard while they are young and was afraid the window was closing. But we have pressed on - he will soon turn 8 and I believe there is definitely still hope for him to make more progress. We just did 40 HBOT treatments in May and we are seeing some great results! IVIG is another treatment I need to research as I've heard great things about it also. So many treatments, so little time and money. Thanks again for all you do - love to listen Autism One Radio - what an amazing resource.
God Bless!
Jenn
Jenn - please give me call
Jenn - please give me call 714.680.0792. We can talk about what might help.