Date post: | 11-Jan-2016 |
Category: |
Documents |
Upload: | crystal-henry |
View: | 220 times |
Download: | 2 times |
A Journey So Far….. A Parent’s PerspectiveA detailed parent’s journey of Autism, biomedical & traditional therapies
By Lisa Ackerman – Jeff’s mom
Autism One 2006
Agenda• Why I am here• Jeff’s History – year by year• Interventions used & details• Lessons Learned• How to get started• Where to go for help• Best resources• More Video of Jeff• Close
Why I am here• It’s simple really
Disclaimer• Just a mom – not a doctor – this
presentation should not be used as medical advice
• Always use a doctor before pursuing any intervention
• Always remember, what works for one child does not work for every child with autism spectrum disorders
• We have little support, little knowledge, little data on what works – we are the leaders forging the path to tomorrows answers
Jeff History • At 1.5 years – before autism• At 2 years – after autism• Treatment Review: 1 year in• Treatment Review: 2 years in• Treatment Review: 3 years in• Treatment Review: 4 years in• Treatment Review: 5 years in• Treatment Review: 6 years in• Where we are going
BEFORE: At 1.5 years• Typical child• Healthy, typical gestation &
birth• All milestones met and starting
to talk • No concerns / no issues• Then…
AFTER: At 2 years• Lost all words• Started to regress in all skills. Assessments at 2.5 yrs showed he was at 3-6 month level• Frequent diarrhea• Selective eating – from a typical 2 year
old’s palate to selecting down to six foods • Irregular dilating eye pupils• Sleep cycles changed (i.e., no sleep)• Rash city all over the body• Into his world and away from ours
At 2 years continued:Note: We introduced milk at 2All evaluation reports demonstrated Jeff
was operating at 3-6 months skill sets – no speech
Pediatrician misstep & delays in diagnosisFirst three doctors provided no hope, no
answers, a possible look at Jeff’s future (seen 14 doctors total since).
Diagnosed: September 30, 1999 with autism, and January 15, 2000 with apraxia (both severe) – follow up diagnosis December 2003 – Auditory processing disorder
At 2 years continued – ATEC & Medical• ATEC Score (
http://autism.com/atec/)106
• Medical tests done – none (doctors did not think about medical)
• All testing done was: behavior-based, psychological, OT, and speech.
At 3 Years• Interventions started (after 2-4
months on waiting lists)Behavioral:
ABA – in home 15 hours a week (worked up to 25)
Speech – in center then in home – 5 hours a week
Biomedical:Supplements: started with the basics: C, A,
EFA’s, B’s, Calcium, & Zinc Medical tests and more medical testsHypothesis created, questions identifiedSearch for a doctor who would listenStarted Gluten free / Casein free (GFCF) diet
and allergy elimination
At 3 years continued – ATEC & Medical• ATEC Score (
http://autism.com/atec/)75
• Medical tests done:IgG, IgA, IgE ProfileComplete Blood profile (RBC, WBC),
Urinary Peptides, Organic Acid, Amino Acid Panel, Yeast Culture, Hair Toxic elements, comprehensive stool analysis, and Coagulation study
At 4 years• Interventions started
Behavioral:ABA – in home 30 hours a weekSpeech - 5 hours a week OT - 1 hour a weekStarted afternoons 2x’s a week preschool w/
an aideBiomedical
Supplements: continued with basics – add transdermal products like glutathione
Medical tests and more medical testsHypothesis continually tested – more questions being answered – key doctor identified
Identified key allergens: soy, corn, eggs, dyes, yeast
At 4 years continued – ATEC & Medical
• ATEC Score (http://autism.com/atec/)
55• Did augmentative communication
(AC) evaluation and obtained a Dynamyte (www.dynavoxsys.com) Important note: Jeff started talking at
4.5 years (8 months after using the AC device)
• Medical tests doneComprehensive stool test, essential
fatty acids, RBC and toxic metals
At 5 Years• Behavioral:
ABA in home 40 hours a week (when not in school)
Speech in home 5 hours OT 2 hours a weekStarted Speech delay Kindergarten w/
aide 25 hours a week• Biomedical:
Supplements: switched to mostly liquid supplements (absorption)
Medical: tried transdermal – went to IV Glutathione, transdermal chelator TTFD, Diflucan & Ketakonazole to treat yeast, and Tomatis first round in December 2002
At 5 years continued –ATEC & Medical
• ATEC Score (http://autism.com/atec/)
35• Medical tests done:
Cysteine plasma & sulfur (both low), comprehensive metabolic, RBC/WBC, CBC & Auto differential, Zinc serum
• Note: huge gross motor skill jump with scooter, bars, bike & T-ball
At 5-6 years - • Behavioral:
ABA in home 15 hours a weekRepeated typical Kindergarten w/ AideSpeech 4 hours/OT 2 hours a week
• Biomedical:Supplements: did supp vacations &
profile to make sure formulation workedMedical: continue IV glutathione every 6
weeks, more Ketakonazole (3 treatments), EDTA oral chelator, two more follow-up rounds of Tomatis, and tried IV Secretin (Secreflow)
At 5-6 years – ATEC & Medical
• ATEC Score (http://autism.com/atec/)
25• Medical tests done:
Essential Fatty Acids & Metabolic RBC/WBC, Vitamin Profile, CBC & Auto differential, Comprehensive Metabolic, RBC & Toxic metals – most important finding: metabolic results are normalizing
• Note: school a great experience!
At 6-7 years - • Behavioral:
ABA in home 15 hours a week In typical First grade w/ AideSpeech 4 hours/OT 2 hours a week
• Biomedical:Supplements: did supp vacations &
profile to make sure formulation workedMedical: continue IV glutathione every 6
weeks, more Ketakonazole (3 treatments), more chelation TD-DMPS, and added MB-12 shots
At 6-7 years• ATEC Score (http://autism.com/atec/)
10 (still – more work to be done!)• Medical tests done:
Vitamin Profile, Comprehensive Metabolic, RBC/WBC, Vitamin & Toxic metals – most important finding: metabolic results are normalizing – also Geonomics testing
• Added intervention: Auditory trainer at school More info on auditory trainers
http://www.telex.com/education/products.nsf/pages/ProductType=Auditory+Trainer+Systems
Device used was an FM Auditory trainer by Phonak. It is the Micro Ear Auditory trainer & X2T transmitter from www.phonak.com
• Fast Forword for reading, language & processing helped a great deal www.fastforword.com
• Also did Interactive Metranome – www.interactivemetranome.com
At 7-8 Years• Behavioral:
ABA in home 15 hours a weekNow in typical 2nd grade w/ AideSpeech 3 hours/OT 1 hours a
week• Biomedical:
Supplements: nebulized & oral glutathione, up’d MB-12 prescription, added HBOT
At 7-8 years• ATEC Score
(http://autism.com/atec/)10 (still – more work to be
done!)• Medical tests done:
Vitamin Profile, Comprehensive Metabolic, RBC/WBC, Vitamin & Toxic metals – new allergy panel – new viral panel
Next steps• Biomedical: Look for answers in
existing diseases & medical conditions that help:Stroke Inflammation
• Traditional therapies: Continue what we are doing in:Aide in school – in phase 4 (of 5)Speech – as much as possible in
everything we do13-15 hours of home / mostly theory of
mind, advanced / abstract concepts & curriculum pre loading
Social skills focus
Treatment Review - DETAILS
•Behavioral•Biomedical•Social•Family•Research
Interventions – Behavioral• ANYTHING ONE-ON-ONE!!
ABA, VBA, RDI, PRT (alphabet soup) Important life skills and age appropriate
skills must be evaluated during therapy life!
Behaviorally basedDrills move forward / no rut zoneWhat works for one does not work for all
• Others to consider: Floortime, TEACCH, Sonrise, social skills, play therapies,
RDI – it’s all about a good team (a supervisor and therapists!)
Interventions - Biomedical• Supplementation with an eye to test
results (with minimal annual testing)• Secretin (IV and transdermal)• Chelation: DMSA, TTFD, EDTA, DMPS
(have done oral, topical variations only)
• Sulphation: IV & Transdermal Glutathione
• Tomatis (four rounds)• Yeast treatments: Diflucan,
Ketakonazole (Year 2-3 provided between 3-6 a year now on maintenance w/ probiotics & Lauricidin)
• HBOT – 40 “dives” 1.3 to 1.5 ATA’s with 100% oxygen – in patient
Interventions – Dietary Do not discount this treatment!!
GF CF DietClean/organic diet
Eliminate all dyes, additives, preservativesGood rule: remove anything with more than three syllables &
especially unpronounceable words!
Phenol removal (Feingold diet)Common GFCF diet allergy removal: Soy, corn,
eggs, yeast & dyes - especially “natural flavors”Rotation diet: to prevent future allergies
• Remember the following: Food is not love Be ready to lose a food for three weeks ANYTIME
Interventions – Picture Exchange Communication System – (PECS)• www.pecs.com• To create communication• To help organize schedules
and eliminate frustration • Consider augmentative
communication device evaluationwww.dynavoxsys.com
Interventions - Social Skills• ASD kids need to learn social
skills differently than typical kidlets
• Frequent play dates with the ultimate friend
• Facilitated with an Experienced aide!
• Build on the activities they love
• Make it fun!
Family• Your family:
A diagnosis affects eacheach family member Discuss the issues as a team to problem solve
and share in the healing process Share with other families like yours (outings &
gatherings)
• YOU: Grieve then move forward – times a wasting! Remember - there are other people in your life
Spouse, children, siblings, parents, friends Stay healthy / stay positive / do little things for
yourselfIf you are healthy, you can help –
if you are unhealthy, you NEED help!
Research• Always be reading – alternating:
EducationBrain & autism researchBiomedical treatments
• Organize the materials relevant to your child’s area of need Involve the experts working with you
son – get recommendations & share information
• Learn from other families what works for themShare the load – assign tasks & meet to
disseminate information
Lessons Learned – part I• Hire an attorney or advocate early in the process
(who knows your district/early start program and has a track record)
• Start the in home program / or one-on-one intervention immediately – you can always change direction Step one: Get on all waiting lists Step two: Call all references provided Step three: talk to as many parents as possible
• Find a doctor that is a long-term partner Get on waiting lists
• Do the GF CF Diet! Trial 6-12 months Compounding pharmacy for meds, organic / clean diet
• Independent outside evaluations on: Behavior, child psychologist / neuropsych,
speech, OT/PT, and other specialists Do testing annually
Lessons learned – part II• Pace yourself for your child’s sake – these are fragile
children Go slow, follow doctors orders Document each step! Have a plan when and why to try each intervention
AND WHEN TO STOP!!• Surround yourself with forward-thinking, positive
people • ASK questions – understand the premise –
beginning, middle and end - of every treatment plan• Become a quasi expert on: medical, diet, behaviors,
speech, OT, research, documentation, or find someone in each group
• If a provider does not exist in your area – GET CREATIVE! Go to conferences & meet them there Travel where they are and stay with family/friends
(make a vacation) Grow them!
• Set goals: Visualize and plan the future
Where to go for help• California people – go to TACA
meetings, and there are more details on each slide topic at: www.tacanow.com
• ARI – www.autism.com/ari• Yahoo Groups – online support
(be wary of online advice – always check with a doctor!)
• Find a doctor – resources used: www.autism.com/ari CLICK ON DAN!
Best web resources• There are over 19,000,000 web sites – (key word Autism on
www.google.com) I have cataloged over 500 by category • Here are my favorites: (of course www.tacanow.org !)
Dietary: www.gfcfdiet.com Supplements: www.kirkmanlabs.com Finding a doctor: DAN! www.autism.com/ari Generic news on autism:
http://autism.about.com/health/autism Mercury & Autism: www.generationrescue.org Special Education law: http://www.wrightslaw.com (lots
here!) Speech issues: www.apraxia-kids.com
• Best email newsletter: Shafer Autism report – to subscribe: [email protected]
• Use YAHOO GROUPSYAHOO GROUPS for specific topics (Like Autism Southern California for general questions, HBOTforAutism for HBOT, GFCFKids for the diet, etc.) http://groups.yahoo.com/
How to get started• Autism is a marathon, not a
sprint!• Although there is urgency in the
desire to save a child – know that any accomplishments take time
• Never give up hope
Getting started – part II• Be, stay, live organized or die
by paperworkBinders are your friendsTwo “to do” lists
Short – 2-3 items accomplishable in 1-2 weeks
Long – the list you pull from when the short list is done
What is important? What is not?
Where we are going• Achieve Jeff’s true potential –
final destination unknown • He is not a diagnosis – he is a
child with a promising future ANDWe will never give up
• Always looking for new resources to add to the puzzle picture
• Goal: recovery – if not, Back pocket goal: independence
More Video of Jeff
Close• Questions & Answers