1 mile west of the Chicago Premium Outlet Mall (800) 810 3100
He looked directly at me and softly said, “Every day I pray ‘the parent’s prayer’—that Mitchell has a long, healthy life, but that Linda and I live just one moment longer, so that no one else ever has to take on the enormous responsibility of caring for our special needs child.” I was interviewing attorney Brian Rubin of Buffalo Grove, Illinois, who focuses on estate planning and advocacy for clients and families who struggle to find the right answers for their child with special needs. I recently met Brian when I was invited to join the Special Needs Alliance (SNA).  My own law practice is focused on serving seniors who have either a long-term illness or an adult child with a disability. He went on to tell me, “My adult life started out fairly normally. After college, I  worked for a large CPA firm, then went to law school at night, and worked for the IRS by day.  I have always had to wear more than one hat.” Brian, and his wife Linda, never planned to have a law firm which focuses on Special Needs Future Planning—but life often takes an unexpected turn.  In January of 1981, their son Mitchell was born.  When Mitch was five months old, Linda told Brian, “There is a problem.”  Brian says the truth of that statement was the beginning of his going through “the stages of special needs grief”:  denial, self-blame, and doctor-hopping.  Mitch has autism, among other diagnosed special needs.  It soon became apparent that Brian needed to quit his downtown Chicago law practice and stay closer to home.  He also wanted to provide appropriate legal guidance and advocacy for his family and others who faced the same issues.  “In those days, almost no one was doing any special needs trusts and benefits planning.  I was one of the pioneers in Illinois.” Brian struggled to balance the demands of a law firm and his passion to serve the community of the disabled from 1987-2001. When Mitch reached 18 years of age in 1999 and became eligible for health care through Medicaid, Brian began thinking about opening a law firm which would be 100% devoted to the laws, regulations, and benefits that both frustrate and support clients with disabilities and their families.  Brian opened the doors of The Law Offices of Brian Rubin and Associates in 2001.  The firm provides more than just estate planning and special needs trusts.  Brian says, “Illinois has a very splintered benefit system.  There is no single door of entry, so families are constantly hitting roadblocks.  For example, our son Mitchell’s area of autism does not specifically fit in any one legally defined area.  He needs a variety of services, but no one agency supplies them as one package.  It’s my job as attorney and dad to discover how to get Mitchell the benefits that he needs.  We provide that same type of advocacy for our clients.” He further explained, “We have found that the government does not tell people the whole story.  Our job as legal advocates is to tell the whole story and to help get appropriate services and residential environments.  We cannot do everything—but we act as the quarterback to get the financial advisor, psychiatrist, health care professionals, education providers, and caseworkers to collaborate to achieve the needed results.” In closing, Brian shared this: “Mitchell has allowed me, Linda, “big sister/assistant mom” Nicole, and “little/big brother” Benjamin to better appreciate what’s truly important in life… and what is not so important.” Brian Rubin has created a website (www.brianrubin.com) which is filled with helpful information.  In addition, he makes public presentations frequently throughout the Chicago metropolitan area and Illinois.
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santa-john I will never take Santa Claus for granted again! Most of us grew up with Santa Claus as a beloved Christmas icon. Maybe you have one or two special Santa memories that you cherish. Did you take your kids to visit Santa and then tuck the photo away as a life-long Christmas treasure?  I sure did! I have always taken it all for granted. I never realized how hard it is for parents of a special needs child to give their kids a Santa moment. At the July 2009, Autism Society of America conference, I met Santa John of Santa America whose mission is to bring “Unconditional Love, Hope and Joy wrapped in a warm Santa hug to special needs children and their families 365 days a year!”  (see Compassionate Santa Services.) Santa America and the Autism Society of America announced a “gentle alliance” that will help children affected by autism and their families have a rewarding experience with Santa for the holiday season.  “Autism is a complex neurodevelopment disability that typically appears in the first two years of life and affects a person’s ability to communicate and interact with others.” Santa John told me, “Children dealing with Autism cannot tolerate the noise, crowds, and the wait involved in a Santa visit. Trying to take kids with autism spectrum disorders (ASD) to see Santa at the mall is total sensory overload. As the child and his parent struggle to deal with the situation some other well-meaning adult scowl and say sarcastically, ‘Can’t you control your child?’ The true answer is no! They really can not control their ASD child.  Even if  parents try their best to give their child what every other normal family enjoys as an  American Christmas Tradition, the parents and the child are often humiliated and rejected.” Santa-America tenderly serves three groups of very special children:
  • Children in hospice or children with parents or grandparents in hospice; and
  • Children with chronic pediatric conditions  or in palliative care; and
  • Children suffering post traumatic stress due to abuse, violence, or other trauma.
I asked how Santa ‘knows all’ when dealing with such challenging situations. Santa John warmly shared that every Santa America Santa is given very careful training. He learns how to:
  • Identify a child on the autism spectrum
  • Learn to ‘tone it down’ to avoid causing a negative response
  • Learn to use story-telling cards and relaxing techniques
Last Christmas, Santa John and the Kansas City-Autism Society Heartland Chapter gave over 50 families an opportunity to meet Santa and have photos taken with him. Santa John told me that, “visits were scheduled with 3-4 families every 30 minutes. Each family met with Santa in a private room next to a cozy fireplace. Santa had his Book of Good Boys and Girls with a page for each child listing their birthday, friends, teachers, and what they wanted for Christmas. Most importantly, the families knew that everyone there would be accepting of any behavioral differences their child might have.” As I listened to this kind and caring man share his compassion for these special kids, I realized that he is a Santa who is a model of the true meaning of Christmas. Santa John says that what Santa America needs most is for us all to donate to help Santas across our nation deliver gifts of Love, Hope, and Joy.  Click here to donate. Santa John’s amazing personal story will be the subject of next week’s blog.
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