Interview Eileen Newman Rubin From Birth through Adulthood: …Children with Special Needs

Interview Eileen Newman Rubin From Birth through Adulthood: …Children with Special Needs

Eileen Newman Rubin wrote in her Prologue: Who am I and Why Do I Think I Can Write This Book?

“I am no one special. I have no unique gifts. I am probably just like you. I am a woman who had a career, who dreamed of getting married, having children, going on family vacations, watching them grow up and go to college and get married. I am a woman who did everything right when she was pregnant, who ran every test, and who told her doctor that “I am running every test because I would make a terrible parent to a handicapped child”. But then it happened. I became the parent of 2 handicapped children (My older daughter Brigette, born in 1992, was diagnosed with Autism at age 27 months. My younger daughter Suzanne, born in 1994, was diagnosed with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified) at age 22 months.) and was thrown into the world of “special needs”.

I was angry, confused, overwhelmed, and never thought I could make it. Well, here I am 23+ years later. I still get angry and overwhelmed, but I still push forward.”

“Push forward” she surely has! The first edition of her book, From Birth through Adulthood: A Handbook for Parents of Children with Special Needs, came out in 2014 and she has already written a second edition. We thank Eileen Newman Rubin for taking part in our Author Interview Series to tell us more about her book and her two children.

Lorna: Your children have reached adulthood. How are they doing?

<<Eileen Newman Rubin:  My older daughter Brigette is moderately autistic.  She is in a group home and loves it there.  Her group home is associated with a day program, so she is constantly learning new things (mainly self-help skills) and going out on the weekends.  She has a great life!

My younger daughter Suzanne is Asperger’s and bi-polar.  She is in a Supervised Apartment and is learning socially appropriate behavior.  She is gradually improving her interaction with the “real world”.  We are currently looking for a job for her in a new location.

Lorna: When your daughters became teenagers what new challenges did you have to cope with? What aspects of high school did your children find most difficult?

<<Eileen Newman Rubin: When my children became teenagers, there were very few new challenges.  Both children were in private schools geared towards their abilities – they did not go to public school.  Being girls and being vulnerable, they both had  their tubes tied as a precaution.  Our main concern their whole lives has been what will happen to them after we are gone.   We have already set up guardians for them to address this issue.

Lorna: What are some changes in our school system that you would like to see that would make life easier for teens in high school that have special needs?

<<Eileen Newman Rubin:  I would like to see both teachers and students treat these children as children FIRST and special needs second.  Suzanne was in public school from grades kindergarden to Grade 4.  She faced a lot of bullying and discrimination.  Most of the discrimination came from the teachers.  This set the tone for the bullying and discrimination from the students.  I would also like to see special needs classrooms set up with SKILLED teachers so that these children can be part of their local community and make friends.  Most of the special needs classrooms I have seen have teachers who are not skilled to address the needs of the child because these children are considered  « throw away » children.

Lorna: Also what are some support services that should be available for young adults with special needs who have finished high school and are entering a new phase in their life?

<<Eileen Newman Rubin: Young adults with Special Needs are entitled to go to school until age 21, depending on the severity of the condition.  I encourage all parents of children with significant special needs to have the school district pay for them up to age 21 (that’s the law).

Also, at age 18, the children are entitled to Social Security and parents should apply for that.  If the child has a significant disability, the parents should apply for guardianship at age 21 as otherwise the young adult is considered an adult and the parents are not entitled to know the medical treatment the young adult is getting or make any decisions on their behalf – even if the individual is non-verbal and non-communicative.

Also, each state has some sort of Division of Vocational Rehabilitation which helps the individual get a job.  I recommend parents take advantage of this service.  Finally, if the individual needs an out of home placement, there is some government division, in New Jersey it is called the Division of Developmentally Disabled (DDD), which parents should register for to put their child on the waiting list.  My advice to parents is to register their child with DDD as soon as they are aware there is an issue – my children were registered at age 3 years old, as the Division can help in other ways throughout the years including into adult life.  However, the specific type of services the young adult should get should be appropriate to their special needs.

From Birth through Adulthood: A Handbook for Parents of Children with Special Needs Second Edition by Eileen Newman RubinLorna: Congratulations on your excellent handbook for parents of children with special needs! What are some of the new topics or information you have added in your second edition of From Birth through Adulthood: A Handbook for Parents of Children with Special Needs?

<<Eileen Newman Rubin: I have covered the key developmental milestones so that parents can gauge if their child is struggling.  I have also added significant information about advocating for your child.

Lorna: When you meet with other parents of children with different needs, what are some of their biggest worries concerning their children?

<<Eileen Newman Rubin: The parents I meet are typically parents who don’t know what to do next.  Many have young children and are in denial – they think their child will « outgrow it ».  Other parents have children who are not getting the services from the school district that the child needs, but don’t know what to do about it.  Most parents don’t know that there are laws in place to protect their child and get the child the services they need.  Once the parents are made aware of this and how to find the laws, some parents can take it from there, but many parents do not know how to advocate for their child.

Lorna: You wrote, «Most importantly, this book tells parents of children with special needs that they are not alone in their journey or in their feelings.” What advice can you give to overwhelmed parents on how to take care of themselves so they can care for their child/children with special needs better in the end? 

<<Eileen Newman Rubin: That is a very difficult question.  Just like all children are different, all parents are different and all families are different.  In order not to feel alone, parents need to make friends with other families who have children with the same type or similar issues.  This can be through local support  groups, though their child’s school or through meet-up groups.  Meet-up groups did not exist when my children were young, but now there is a proliferation of meet-up groups for parents and families of special needs children.  Parents should also take any help they can get. Family support is very important.  Maybe a grandparent of the child can take the child for a few hours to give the parents a break.  Many churches and other religious organizations have a « Parents Night Out » where they will babysit the child so the parents can have a break.  Also their state Division of Developmental Disabilities provides « respite » (or babysitting) services with people who are training in dealing with special needs children.  There are a ton of possibilities; it all depends on the situation.

Lorna : Thank you very much, Eileen, for sharing your knowledge of raising children with special needs. We wish the best to you and your family.

Read also: Review of From Birth through Adulthood: A Handbook for Parents of Children with Special Needs Second Edition

Buy From Birth through Adulthood: A Handbook for Parents of Children with Special Needs Second Edition Amazon.com   Amazon.ca  

This post was written by Lorna
Lorna d’Entremont: Co-owner of SentioLife Solutions, Ltd. the company behind KidCompanions Chewelry (2007) and SentioCHEWS (2013), mother of three, grandma of 5 and wife. She is a retired teacher and special needs advocate. Throughout she has taught all levels from grade 2 to grade 9. Lorna loved teaching and enjoyed seeing the students progress in the school system. During her 30 year career she took a few years off to raise her three children.
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