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Showing posts with label New Parent. Show all posts
Showing posts with label New Parent. Show all posts

Wednesday, March 23, 2011

Useful books


  1. Facing Autism: Giving Parents Reasons for Hope and Guidance For Help By Lynn M. Hamilton [Good book to read in the beginning – points to lot of resources ]
  2. OVERCOMING AUTISM: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life By Lynn Koegel [Very good comprehensive book]
  3. Let Me Hear Your Voice By Catherine Maurice [Very good Parent Account ]
  4. Children With Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder, By  Jaquelyn McCandless [Good first book on biomedical approach/DAN]
  5. The Out-of-Sync Child. $14.95 PEN28 Carol Stock Kranowitz [Good book on SIT]
  6. Visual Strategies For Improving Communication: Linda Hodgdon [Very good]
  7. Solving Behavior Problems in Autism: Linda Hodgon [Very good]
  8. Teach Me Language: A Language Manual for children with autism, Asperger's syndrome
    and related developmental disorders. by Sabrina, Ph.D. Freeman [A good book but is useful little later ]
  9. Do-Watch-Listen-Say: Social and Communication Intervention for Children With Autism by Kathleen Ann Quill [Very useful a little later ]
  10. The Assessment of Basic Language and Learning Skills (The ABLLS) By James W. Partington and Mark L. Sundberg [Good assessment tool +useful for planning the goals in all areas ]


This list is not comprehensive but just the top 10 that came to my mind 

Useful websites

1. http://rsaffran.tripod.com/ : Good ABA link 

2. http://www.mariposaschool.org/ : Very good link – Has downloadable VBA training manual that is very well compiled.

3. http://www.drcarbone.net/resources.aspx: Has some useful resources from Dr Carbone for speech production thru VBA

4. http://www.behavioranalysts.com/ : VB resource in California

5. http://www.autism.org/ : Has lots of useful links

6. http://www.autism-recoveredchildren.org/ :  ARI site, DAN protocol, Video clips of recovered children

7. http://www.jeena.org/   : An [Indian?] parent organization based in California

    http://www.autism-india.org/: An informative site [based ot of Delhi]

8. http://www.tacanow.com/default.htm : a good comprehensive resource site [California based]

9. http://www.gfcfdiet.com/ : About the GFCF diet

10. http://www.usevisualstrategies.com/ :Visual strategies website

11. http://www.polyxo.com/  : About ABA, Floortime etc

This list is not exhaustive but the top sites that came to mind

10 things you can start at home right away [not necessarily in order]

1. GFCF, sugar free diet

2. Massage you child with olive oil /Gingely oil everyday head to toe before his/her bath
   Gradually increase time and pressure if child does not like it.

3. Play soft classical music – instrumental in the background when the child is very anxious , ready to sleep etc .If you know to sing – do sing to you child in soft pitch and tone .

4. Set up a visual schedule for the child, keep telling him/her what is the next activity?

5. Also introduce a lot of choices for the child in terms of food, activity, persons, locations etc.

6. Take photos of things, people and places and try to teach the child to name these, later connect these to activities /verbs.

7. Use the child’s favorite things to induce him/her to comply /communicate /verbalize

8. Include a lot of park play, sand play, water play, messy play for the child – it will help with sensory issues .If child is not interested start with smaller quantities of time or substance.

9. Play lot of interactive games – tickle /roll, swing around etc and try to keep the child connected to you

10. Use a firm hand with a soft glove – be firm and consistent and show lots of love and understanding at the same time .Do not give in to tantrums.

Remember, it is tough on you but it is tougher on the child!! 

If you are a new parent ..

Diagnosis of ASD is one of the most shattering things that can happen to a child and his /her family .however the good news is that, currently, there is a lot of hope for our children.

Therapies such as ABA/VBA/DTT, SIT help our children to learn the things they missed out when they were sliding down the tunnel of Autism.

Biomedical approaches, prescribed in the DAN protocol combined with Ayurveda and homeopathy help them heal on the inside and climb out of the vortex in which they are trapped.

However, it is a lot of hard work for the parents, professionals and the child, sometimes for a long period of time depending on the age of the child and severity of the problem.

Key to success lies in

1. Early intervention seems to have a better prognosis
  
Every minute , the child spends without intervention is sending him deeper into the vortex of Autism , so don’t waste time , start ASAP .Get an assessment done by a neurologist , speech- language pathologist, psychologist and if possible a sensory integration therapist and special educator .If this team can work together it will be great .


2. Taking the help of the right professionals at the right time

A.
Prioritize on ABA [Applied behavior analysis] /DTT [Discrete Trial training], VBA [verbal behavior analysis], Speech therapy and SIT [Sensory integration therapy.

Also consult a DAN doctor ASAP and start the child off on a GFCF diet and supplements etc as prescribed by the doctor. If possible consult a good Ayurvedic /homeopathic doctor who is aware of ASD and related issues .

Others such as Floor Time, RDI, Option method, AIT [Auditory Integration therapy], Music therapy. Hippo therapy /Therapeutic Horse riding are good if you have the time and funds.

B.
Research the background and success rate of the therapist you are going to use .Talk to parents who have used the therapist earlier.

Ensure they are open to parental involvement as miracles often happen if the parent and therapist can work on the same frequency

Transparency of work is important – do not agree if therapist/Doctor is reluctant to let you watch her /him work.

If uncomfortable or unclear about the therapist/doctor, discuss openly and if this goes on for too long, a change in therapist/doctor may be warranted

Try to read and learn about all the approaches the therapist/doctor uses so that you can operate from a space of knowledge with the child and the therapist /doctor.

Ensure that you do all the homework required and that the child has a lot of exposure to the regular environment – school, social life, park etc as NET [Natural environment training is very important]

3. Complete parental involvement where this child is a priority

At least one parent needs to focus on the child , therapies , follow-ups etc – this is in itself going to be lot of work so the other parent needs to support with all other responsibilities [household , financial , other child etc ] or both parents need to balance and ensure the child gets enough intervention all the time .

Take as much help from family and friends in whatever form they can offer [Cooking, baby sitting, groceries, therapy] as the initial period is crucial to the child.

Mental health of the parents [and in some cases the others in the family like siblings , grand parents ] is very important .Counseling will help to overcome the hurdles posed by the grief – denial cycle and any other issues related to this high stress situation families are suddenly thrust into .

Parent support groups are extremely helpful. Finding a set of parents who live in the same locality can help to a large extent as resources and stories can be shared effectively .If this is not available or possible regroups are good too.

Egroups:

India_DevelopmentalDisabilities@yahoogroups.com: US based group with a lot of Indian members from India and US

AutismIndia@yahoogroups.com: Autism specific group

There are many more for each area like GFCF diets , ABA /VBA etc .


ALL THE BEST
Akila

Importance of Parental Involvement

Bernard Rimland : Founder of Autism Research Institute which pioneered many initiatives for Autism 


Catharine Maurice : Author -Let me hear your voice – mother of Anne- Mary and Michel[both children were successfully mainstreamed after intensive home based ABA  therapy]


Barry Kaufman  : Son Rise /Option Institute – Father of Raun Kaufman [who has totally recovered from Autism and speaks publicly -parents run The Option institute where they help hundreds of other children and families 


Jalaja and Narayan :Parents of Krishna Narayan [Non verbal -but has authured couple of books ..Ayurveda really helped him]


Soma Mukhopadhyay :Mother of Tito Rajarishi Mukhopadhyay [Non verbal - has authured several books ..Mother is founder of Rapid Prompt Method that helps persons with severe disabilities learn and communicate ]
 
Just a few examples out of many more where parents have made a huge contribution in the areas of  research for Autism and development of their own child or the building of resources. 

Every success story in Autism has a dedicated parent behind it.

Parents are and going to be the key differentiators in the arena of Autism – whether in the lives of  their own children or for the common cause of Autism. 


Why is parental involvement important? 


-Complex nature of the disorder


-Each child in the spectrum is different and has individual needs 

-Early detection of special talents and skills

-Number of approaches are available but careful design of the child’s intervention is required

-Shortage of trained professionals 

- Shortage of Schools/Intervention Centers

-Most cases need life long support and intervention – eventually parents may need to take over