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   Madore Family's Autism Resource Site 
 

 


RECOVERY

When I first read Catherine Maurice's "Let Me Hear Your Voice,"
I was filled with great hope that I could "recover" my child.
We set out to find ABA therapists in my area, locate a consultant/trainer/troubleshooter/specialist in autism, and create an in-home "classroom" to begin his recovery. We have been at this for about 2 years and we have seen huge improvements. He had zero words to start in November 2000 and now he has over 700 words and has over 50 phrases that have multiple word combinations up to 3-8 word sentences. He is beginning to ask questions and will actually try and converse with us!! He comments on things in his environment and is using a lot of descriptions and cool phrases. He has learned a lot of phrases from his classmates not to mention body language. He is now into what the other cool 4 year old NT boys are interested in -- Rescue Heroes, Power Rangers, Super Hereos, Star Wars and such. Good bye to Blue's Clues, Bob the Builder, Toy Story and other pre-school icons.

We now have him in a private pre-K with a constant shadow that we pay for. It has become very expensive for us, but we are trying to keep our focus on providing him the most we can these early years. I think being around NT kids in a regular classroom has helped him so much. I know he could not have done it on his own (especially in the beginning) without a shadow but hopefully in the next couple of years we will be able to fade the shadow (teacher assistant) out. Andrew still needs the one-on-one therapy to close the gaps where his delays are concerned. If only time would stand still, we might could catch up. We still deal with some behaviors and idiosyncrasies but it is so much better. We are currently trying to " recover " little things to help him along. We use the ABLLS, the Brigance, the ABA curriculum book (Catherine Maurice inspired) to judge where he is at and where we should go next. We are really a team- parents and therapists. It can be an odd relationship but we all want the same thing--to help Andrew reach his potential. Sometimes more personalities with different techniques can create a better program.

"This next section was written in the spring of 2001 and I wanted to keep it on the site to help anyone understand what was going on when he was 3 years old."
In the spring of 2001 we started a once a week "school time" where 3 non-autistic children come over and they practice things that he will need to know for school like songs, circle time, holding hands and walking in a line, calendar song/time, good morning song where they have to answer questions (your name, age, favorite color, etc..) and more. The video I watched a few weeks ago of their "school time" was amazing (Remember this was around January-March 2001). Andrew got his carpet square like the other kids, he sat cross-legged on it the whole time, answered questions, sang songs and performed the hand/body motions to them. He even asked someone else a question during the good morning song ("What's your name?"). My husband and I re so proud at how far he has come. Back in November 2000, he could not even sit in a chair, follow directions, match, and could not talk. It gives us hope through the rough days. The therapists have worked hard and try to make it fun for him, but in the end it is still a lot of work for him to do. He is behind and he does have a lot of catching up to do. The best part is that he loves the praise and is very proud of his accomplishments.

What I have tried to do on this page is to include some information and links that may help you understand what other families and researchers are doing to "recover" autistic spectrum children. I don't know why some children do not recover, but I do know that there are too many children being diagnosed and even one child that is not recovered is one too many. As parents, all we can do is to help our children to do the best they can with what they have.

I know that I may not be able to "recover" my child totally, but I will fight the damage that has been to my son as long as I have a breath in my body. For me "recovery" is a multifaceted ideal. We "recover" Andrew from new things every week. He might be playing inappropriately with the musical flute/recorder (taking the top off and on). We work with him on how to play with it appropriately and that is a small problem we have "recovered." We take him out and expose him to different sounds, lights, and activities so that we can help him to get used to dealing with things that might bother his senses (was real hard at first with people staring and making comments about his behavior but he has improved so much. We try not to do too much in a routine way so that he can get used to change (this has been hard but he is doing well with it). We are not trying to make him into a robot or to torture him. We are basically trying to help him prepare for the world that he will be exposed to.

In the end he will hopefully have reached his greatest potential and be the happiest and most successful that he can be.  No matter what, we will love him and appreciate him like no other.

I encourage you to find a good doctor, preferably someone with knowledge of the DAN (Defeat Autism Now) protocol. Have them run tests on your child to check for things you would feel comfortable with such as: fragileX, amino acids, metals, intestinal permeability, candida, yeast, mercury toxicity, food allergies, viruses, vitamin & mineral deficiences, and such. Most, if not all, of our kids have medical/biological problems that need to be addressed; read a great paper about medical/biological problems in our children. Check out what the Pfeiffer Treatment Center has to say about Metallothinonein (MT) and Autism (supposedly affects 99% of our ASD kids). I would also suggest that you order the DAN protocol for yourself. While you are trying to heal your child's immune system and gut, start with the therapy that will help catch them up developmentally ( ABA, Speech, VB, OT, PT, Supplements, etc..).  Check out my BioMedical Page for more information and links.
Remember to listen to what your child's body is telling you.

LINKS FOR RELATED RECOVERY SITES

ABA Resources for Recovery from Autism/PDD/Hyperlexia
One of the best sites for ABA information, legal documents for fighting school districts, and how best to implement an ABA program.
http://members.tripod.com/RSaffran/aba.html

Recovered kids (a mail group)
I would highly suggest you at least read some of these emails between parents with
recovered or recovering autistic children.
You can also join and post your own questions (even if you are newly diagnosed).
http://groups.yahoo.com/group/RecoveredKids

You can join other groups are create your own at
http://groups.yahoo.com/
Everyone should take a look at the Enzymes-And-Autism Yahoo group at http://groups.yahoo.com/group/enzymesandautism/  .  They have an amazing amount of information about enzymes and children recovering.
Other mail groups that I find useful
Texas Autism Advocacy , Interven , Verbal Behavior , Autism Awareness Action , CAN Alert ,
Autism List
, Autism-Mercury , Allergy-Related Vaccine Induced Autism

Order the DAN protocol to begin to understand what is
medically/biologically wrong with your child.
http://www.autism.com/ari/request.html

A Comprehensive Guide to Managing Autism by Willis S. Langford
Please read this thoroughly to help solve some of the medical/biological issues for your child.

http://www.talkinternational.com/issues_health_autism_guide_aug_03_01.htm

The International Autism Research Center
Physician and father of an autistic child.
http://www.gnd.org/autism/overview.htm

PROGRAMS More Than Words - The Hanen Program for Parents of
Children with Autism Spectrum Disorders
http://hanen.velocet.ca/programs_autism.shtml

Autismnet List of Recovered Children
http://home.san.rr.com/autismnet/rollcall.html

Interview with parent of a toddler with autism
http://www.csaac.org/intervw.htm

Parent testimonials (long)
http://people.sca.uqam.ca/~sqa/lovaas_damian_e.html

A chance to be heard
http://www.postgazette.com/newsroom/extras/19980106haut.asp

There is Hope
http://www.geocities.com/Heartland/Plains/1648/hope.htm

Intensive therapy...Louise
http://www.post-intelligencer.com/autism/tret08.shtml

Donna's Story
http://www.treehouse.org.uk/story.htm

Reagan
http://members.nbci.com/Neil_S_Clark/ABA.html

Fairfax County, Virginia AutismProgram
http://washingtonpost.com/wp-dyn/articles/A21939-2000Jun29.html

Counting the Cost of Autism (Hamilton, Ontario)
http://www.hamiltonspectator.com/reports/265353.html

Intensive therapy... (Seattle, WA)
http://seattlep-i.nwsource.com/autism/tret08.shtml

Letters of Support for Bradley Murphy
http://www.insidetheweb.com/mbs.cgi/mb1137461

Tommy (Anchorage, Alaska)
http://www.cridder.com/morgue/press/news/autsidebar.html

Maxie (Naples, Florida)
http://www.naplesnews.com/special/ztest/a24337b.htm

Early help... (Vancouver, BC)
http://www.nsnews.com/issue/w102797/autism.html

Early Intervention... (Torrance, California)
http://www2.sac-co.k12.ca.us/speced/resource/rise/early.htm

The Virginian-Pilot and The Ledger-Star, Norfolk, VA
http://www.psycport.com/news/2000/10/10/NFLK/0000-7004-KEYWORD.Missing.html

Treatment triumph in treating autism (Australia)
http://www.communique.qut.edu.au/features/Autism.htm

ABC News Nightline
http://abcnews.go.com/sections/nightline/DailyNews/nl_010309_autism_jake1.html

Hannah's Story (documentary film)
http://www.hannahstory.com/

Chelation Love-Letters Recovery Stories from the Autism-Mercury List
http://groups.yahoo.com/group/Autism-Mercury/files/LOVE_LETTERS
GFCF Diet List Recovery Stories
http://www.gfcfdiet.com/Successstories.htm

Digestive Enzymes Recovery Stories
http://groups.yahoo.com/group/enzymesandautism/files/Enzyme Success Stories and Not-So-Success Stories/

New York State Department of Health Clinical Practice Guideline
http://www.health.state.ny.us/nysdoh/eip/menu.htm

The Childhood Learning Center includes ABA curriculum,
links to parents groups, and a list of service providers.
http://www.tclc.com/

Behaviour analysis at Athabasca University
http://server.bmod.athabascau.ca/html/aupr/ba.shtml

Great Ideas for Teaching
http://www.gift-inc.com/ .

Lingui-Systems
http://www.linguisystems.com/

Mayer-Johnson Inc.
http://www.mayerjohnson.com/

Pyramid Educational Consultants
http://www.pecs.com/index.html

Silver Lining Multimedia
http://www.silverliningmm.com

Discrete Trial Trainer
http://www.dttrainer.com/

FEAT has a collection of teaching programs on-line
http://www.feat.org/

Flash!
http://shops.looksmart.com/aba

Gaining Face teachs recognition of emotions and facial expressions
http://www.ccoder.com/GainingFace/index.html

Labeling Tutor
http://members.aol.com/peuapeu/

Progressive Academic Learning System
http://www.pals1.com/

ABBY for Windows
http://www.compusmart.ab.ca/jhealth/abby/

Log It!
http://www.iowapc.com/logit.html

Spedfile
http://www.spedfile.com/

Books to read (These are the first positive ones that I read):

Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery. a must read book by Karyn Seroussi, Bernard Rimland Ph. D. (Hardcover - February 2000) that has a lot of resources.

Let Me Hear Your Voice.The reader may also be helped by reading a book written by a mother of 2 recovered autistic children: Maurice, Catherine. Alfred A. Knopf, publisher, New York: 1993.

Facing Autism : Giving Parents Reasons for Hope and Guidance for Help.
Full of resources and information by Lynn M. Hamilton, Bernard Rimland.
Waterbrook, publisher, Colorado: 2000.

January 2002

I would like to share a good thing that happened today.  I was with my son at the pediatrician's office for a follow up from the ER. Last week he tested positive for the Flu, RSV, and a double ear infection. While we were in the children's waiting room a boy came up to my son and stood before him.  Inside I started to cringe because I know how these things play out.  Child comes and invites him to play or asks him a question and my child ignores them, babbles back a Toy Story line, or walks away. 

The boy then asked my son, "What's your name?" 

My son looks him in the eyes and says, "Andrew."

As I am picking myself off the floor my son then says, "What's your name?"  Oh my god, this is like those dreams that I have all of the time about how he can talk-but not really. 

The other boy answers, "BJ."

My son says, "Hi BJ."

I am looking around at the parents in the room with chills running up and down my body knowing they must know what a miracle this is.  Is my heart still beating, am I in heaven?  I guess they don't see it.  Their kids have been doing this for years with no effort.

The boy says, "Come on Andrew letís play in the house."  They go into the playhouse and start pretend cooking and then taking turns knocking on the door and saying "Who is it," and "Come in."  I move over to where the house is and look through one of the cracks near the window shutters (so I can watch them).  Normally I am watching to make sure he is not knocking someone down or being made fun of, or losing it because he is overloaded-not today. I watched him continue to play in the house as 3 other boys gravitated to them one-by-one.  The doctor came out and asked the boys if they could be a little bit quieter but to keep playing, she just couldn't hear the patient very good on the other side of the wall.  Andrew stopped, turned to the doctor and said, "Okay."  She stopped and stared at him among the other boys.  She looked at me in shock and said "Hello Ms.Madore." I knew she understood the joy I was feeling.  I was so proud that my son was being reprimanded for being "a boy." 

I wish it could always be like that.  What a feeling to be almost normal, not having to excuse him and explain about autism or carry him away during a horrible tantrum. We flew below the radar today. We went undetected. I can replay that scene in my head over and over and hold on to that feeling through some of the harder times, as they always come too often.  Today I am feeling strong.  I felt a flash of success. I can say "Go ahead Autism, make my day!"

 

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