Sunday, November 11, 2012

Interview with "Raising 5 Kids with Disabilities"

Greetings from the 20Stuffers!

This evening we have the privilege of hosting my interview with the author of "Raising Five Kids with Disabilities." You may check out her wonderful, often funny blog at http://5kidswdisabilities.com/

She has an amazing story that this tiny interview could not begin to cover, so be sure to check out her book (available through Amazon), which she mentions at the end of the post.

Here are the questions that I asked her:
1) Your special brother shaped your life. Can you tell us what connection his life had with your adoptions?

2) Can you help us understand what types of disabilities your children have had and how that has impacted your family life?
3) How have you dealt with the way that strangers (or even friends and family) have viewed your family? Did you experience more love and support or more rejection and awkwardness from others throughout your family's journey?
4) How have techniques for parenting special-needs children changed over the years of your family's history?
5) What have been your greatest joys in raising children with disabilities?

So let's get started!

1) Your special brother shaped your life. Can you tell us what connection his life had with your adoptions?

Living with a brother with severe disabilities, (deaf, blind, severely developmentally delayed and schizophrenic) taught me that "God don't make junk"...that everyone is valuable and worthy of living as full a life as possible.  As a result, I have lived a life of complete acceptance of everyone.

I have a biological son, and chose to add to my family through adoption because, basically, it made more sense not to have to go through another pregnancy.  (Selfish, I know, but the truth...)   I desperately wanted a daughter, and adoption was the only way to guarantee that!  As it turned out, my son had hereditary congenital blindness, so adoption was the best option. All of the children we adopted, with the exception of my youngest daughter who is deaf, were placed with us as "healthy children".  We had no idea they would end up with disabling conditions.


2) Can you help us understand what types of disabilities your children have had and how that has impacted your family life?


My biological son, Frances, has a congenital vision impairment the same as my brother.  Fortunately, he does not have my brother's other disabling conditions.  He has a gifted intelligence and a sense of independence which has served him well.  (He has obtained his PhD from Cambridge University in human computer interaction, and he is now a department manager at a major computer company where he works on developing computer apps for individuals who are disabled.)   We ensured that he was able to do everything a fully sighted child could do, attend his public school, ski, swim, wrestle, and take care of his own needs independently. His vision was a "minor inconvenience", (his words.)

Our oldest daughter, Dinora, came to us as a "healthy" infant from Guatemala.  She turned out to be profoundly deaf, a condition which was healed miraculously on one Christmas eve. (I have the medical records to prove it!)  As the daughter of an alcoholic birth mother, she had Fetal Alcohol Affects which led to attention deficit disorder and anxiety.  Additionally, as a teenager, she herself became an alcoholic, something for which she is now in recovery.  It was explained to me that because she was Mayan Indian, she would have a genetic predisposition to alcoholism.  (It appears that Indians did not have the habit of using alcohol until a few centuries ago, unlike Europeans who were used to wine and alcohol.  Therefore, their bodies become more easily addicted.)

Steven was adopted after he had been our foster child for three years.  He had been placed with us shortly after birth, still in withdrawal from the cocaine and heroin he had been exposed to by his birth mother.  The best way to describe his ensuing disabilities is that his internal wiring was screwed up.  He has autism, severe sensory integration deficit, obsessive compulsive disorder and severe attention deficit hyperactivity disorder.  He has been our most challenging child as he is not one to eat out, take on vacation, go to the mall, celebrate holidays or actually participate in community activities.  It was easier to just change our lifestyle to accommodate him than to insist he participate, which would lead to meltdowns and violent self-abusive episodes.  (When he was 6 and it was time for him to make his first communion at church, he hid under the pew and banged his head on the floor.) 

Angel has the most unusual disability...Dissociative Identity Disorder...(multiple personality disorder.)  This was caused by severe abuse during his early childhood.  It develops when the pain is so bad that the brain separates itself and creates an alternative personality that does not feel the pain.  It is a coping mechanism which shields the child from the abuse.  He came to live with us at the age of 3, again placed as a "normal, healthy child".  The first clue of the darkness within him came a few months after he came to live with us when he kicked me down the stairs when I was attempting to put him in a time out, and later completely denied he had done so.  He was officially diagnosed at age 6, which I understand is a very early age.  Since his diagnosis, he has been in intense therapy, and he is doing well.  He has accepted his "peeps", (as he calls his personalities,) and they have learned to work together.  (For instance, the peep that studies for the math test is the same peep who actually takes the test.)  He has done tremendously well in this area, but still does not know all of his parts, and similarly does not remember most of the abuse he suffered.

Marie came to live with us at the age of 7 as a child who is profoundly deaf.  Deaf I could deal with (I knew sign language,) but I was not at all prepared for her post traumatic stress disorder...again from severe abuse up to the age of 7.  If something reminds her of the abuse, she completely breaks down and kicks, bites, spits and crawls into a corner screaming with wild eyes, kind of like a version of the Exorcist.  The only way to get her to calm down is to call an ambulance, have her taken kicking and screaming to the hospital where she would be given a shot of a sedative.  When she would wake up from the sedative, she would have no memory of the episode.  The first time it happened it was frightening and horrible.  Although it has always been a horrible thing to witness, I learned not to be frightened, and that such trips to the hospital were going to be a normal thing for her.  I learned to pack a hospital bag with some bottles of water, a good book for me to read while she was sedated, and a set of playing cards so that when she came around we would have something to do. 

Having these children has not had a huge affect on my life.  I know it sounds odd for me to say that, but after we adjusted our life for Steven, it was normal to include the additional two.  We are not a family that liked to eat out or vacation in Disney World.  We have a small cottage in New Hampshire where we vacation and go on weekends  and it has been our place of relaxation. It is calm and quiet there, and the children have loved it.

Additionally,  I have had a wonderful job which has allowed me the time off any time I need it.  With such flexibility  to leave for an appointment or hospital run, raising these children has been easy. I love them to pieces, and accept their challenges as a part of who they are. 

3) How have you dealt with the way that strangers (or even friends and family) have viewed your family? Did you experience more love and support or more rejection and awkwardness from others throughout your family's journey?

This is an excellent question.  Our family has not always been the most supportive and friends have thought I was crazy.  The looks of strangers....well, I am lucky that I have a personality where I do not care what others think.  If I did care, I would have led a very unhappy life raising these kiddos.  Caring for children such as these is not for everyone...

4) How have techniques for parenting special-needs children changed over the years of your family's history?

I have learned to ease up on my standards.  My house is not immaculate.  Our meals may not always contain all the elements of the food pyramid.  I buy the same black socks for everyone because finding socks that match was too much of an issue.  (I know this may be an "ewwwwww" for some of you, but they ARE washed and clean...)

The one thing that has been consistent is that my husband and I always find time for each other.  My children have always gone into their bedrooms by 9:00.  If they were too old where that bedtime would be too early, they read or......gasp....watch television. (I know, highly not recommended, but it has kept my life sane.)  My husband and I also try to get away to New Hampshire by ourselves every few months.  Finding someone to watch the kids has been paramount for these weekends, and we have often had to pay three different people to watch them at their houses, (that is, splitting the kids up.)  It has been expensive, but not as expensive as a divorce would have been had we not worked on keeping our marriage a priority.

5) What have been your greatest joys in raising children with disabilities?
I LOVE kiddos.  As mentioned above, my house is not immaculate.  I HATE to clean.  I would much rather spend that time with a child, playing a game of Uno, baking a cake, watching Americas Funniest Home Videos, (a great tv show for a child who is deaf.) 

The greatest joy has been watching these kids survive and thrive.  My 4 youngest had awful prenatal and early childhood experiences.  Had it not been for being in an accepting family, I hate to think how they would have "turned out".  I take comfort in the fact that they are doing as well as possible and that I had something to do with that.  All four of them were slow to learn to love, and I would take great joy every time they would make a baby step towards demonstrating affection.  I can proudly say that all of them are now comfortable hugging, kissing, and saying "I love you!"  That is the most wonderful thing EVER!

I am extremely proud of my children because THEY all have compassion for individuals with disabilities and a passion for community service. Frances has traveled all over the country helping out with Habitat for Humanity.  Dinora has assisted with the opening of a soup kitchen in Guatemala. It is amazing to see Angel take the first step and use sign language to talk to an individual who is deaf in the community. (Our whole family "signs".)  Marie will go up to a little child with Down Syndrome and wave and smile.  Even Steven, who was obsessed with reptiles and worked at a reptile facility, would demonstrate extreme patience when a group of kiddos in wheelchairs would come in.  He would take their hands (after asking the parent, of course,) and put it gently on top of the reptile, assisting the student to explore the reptile safely.

I have been exceptionally lucky. I have had a wonderful, adventuresome life with a family I love and that I have loved raising.


If you would like to read more, please check out my e-book, The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane, available through I-Books, (I-Tunes), Barnes and Noble, or Amazon.

***

OK, that's the end of the interview. Thank you, Raising Five Kids with Disabilities, for joining us here on 20Stuff!

Blessings,
Ms. 20Stuff

1 comment:

  1. You ladies are amazing! I have been following 5 children w disabilities and read her book. I bless you both and all of the other wonderful families that have adopted these beautiful children.
    I have a nephew from China....my brother n law has MS (very beginning stages) but there desire for a child was so strong they knew adoption was the way to go. W is the love of their life and they hope to adopt another child from China before they age out.
    I will keep you all in my prayers!

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