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From Devastation to Acceptance to Advocacy: The Journey of a Mother & Attorney Through the Maze of Autism
I could take you back further in my life, but I feel as though my true life began in the year 2002 when my son, Aaron, was diagnosed with Autism.I will digress a bit to my earlier life, as it will set the stage for my journey. I grew up in a loving family and my childhood was what some would consider entitled. I was a good student, had friends, went to a good college and found a meaningful career path in law school. I was married to another attorney in 1996, moved to Westchester shortly thereafter, and had a wonderful career as the senior associate attorney in a prominent law firm where I managed the elder law department (which interestingly enough was a practice devoted entirely to representing the rights of families with disabled children and parents). In March of 2000, my life changed, as I gave birth to beautiful twins, Aaron and Rebekah. They were relatively healthy babies. However, Aaron was born with one enlarged kidney which when tested was benign, and was put on an antibiotic prophylaxis which was to prevent any urinary tract infections which could possibly irritate his kidney. He also suffered from colic, had reflux, and had many ear infections. I do not remember much about this wild time, but I was a career woman and went back to work when the twins were four months old. Everything was progressing nicely, the twins hit all their milestones in a timely fashion, and I was balancing my family and career well.
Nevertheless, at about 13 months of age (incidentally right after Aaron's MMR vaccine), I began to notice that Aaron was acting differently than other children. He was difficult to engage and loved to line toys up in an order that really only made sense to him. He was not speaking, and was quite happy to be left completely alone in the corner of a room with books. I was told by his pediatrician, and my family, that he was fine and just progressing slower (boys are supposed to do that). So I left it alone for a few months hoping they were right but in my gut knowing that there was something wrong. In the meantime, I became pregnant again and was working and trying to balance my busy life. When Aaron was about 20 months old, a friend of mine, who is a speech therapist, told me that she thought that Aaron should be evaluated by early intervention because she was noticing strange behavior. Again, I took Aaron back to the pediatrician, who told me to say "earth to Aaron" to get his attention, and that this type of behavior was not uncommon for boys. Nonetheless, when Aaron was two years old, I could stand over him and try to make eye contact with him but he would always look away. Finally, I took him to be evaluated by speech and occupational therapists and a psychologist. They told me at the end of the arena evaluation that Aaron had Autism. This was a day I will never forget. I was numb. When I spoke to my family and spouse, they all tried to convince me that he may have some Autistic features but would ultimately be fine.
Here started my insanity. Six months pregnant, I left my job, and became a full time advocate to cure my son and a "stay at home" mom. I researched Autism and left no stone unturned. I quickly went to see all sorts of doctor "specialists" - developmental pediatricians, neurologists, psychiatrists, allergy and immunologists, and alternative practitioners. There was only one consensus amongst them all – that my son was profoundly Autistic, Apraxic, had sensory dysfunction, an auditory processing disorder, ADHD, and was possibly mentally retarded, and in order for him to make any progress he was going to need intense therapy (more than 40 hours per week) in all aspects of development, possibly medication, drastic change in diet ect. ect. ect.
Well….. I did everything that I could, some that made sense and some not so much and anything that I could afford. I got him intense therapy both at home and at school, got specialized behavioral therapy, specialized speech therapy for Apraxia, sensory OT, listening therapy, considered and tried medication, and started a restricted gluten casein free diet. I researched the causes of this disorder, and found that along with genetics, that there were several environmental factors that could have contributed to Aaron’s Autism including the antibiotics he was on since infancy, toxic mercury in his vaccines, and mercury that I could have ingested while pregnant. Finally, a remarkable service plan was put into place for Aaron and I spent my days taking him from therapy to therapy, my nights awake researching about Autism (and being with Aaron – because he never slept) and worried about the baby that I was carrying (who I knew was a boy), and my daughter, Rebekah, who was not getting the attention she deserved. I paid no attention to my husband, who was working endlessly to provide for our family and dealing with a crazed wife and his own feelings about the situation, I also paid no attention to myself and was on auto drive to make my son as well as he could be. Everywhere I turned there was a different program or a different treatment for Autism. I tried any of them that made sense to me and that I could afford, and I craved one place that a parent could go to get all of the answers but there was none - so I started compiling a list of programs and services for families myself.
When my second son Zachary was born in July, of 2002, Aaron was already deep into his therapy and progressing slowly but nicely. Thank goodness that Zack was a good baby. So the dust cleared, and it was time for me to mourn – mourn the loss of anything "typical" in my life, mourn the loss of the intimacy with my husband, mourn the loss of my career, mourn the loss of myself, and mourn for Aaron. The best thing that I did personally that really saved me was to enter into therapy for myself. This helped me to accept the diagnosis, cry, express anger, resentment, blame, jealousy and work through these emotions and realize that my son is who he is. It helped me realize that my mission was not to cure his Autism, but to do what I could to make his life as fulfilling as it could be and give him every opportunity that he should have to find happiness as he is without neglecting myself and my family. I also realized that only when I became part of Aaron's therapeutic team would he truly progress. I also joined a support group of women who had similar issues to me and this helped me cope and be a better parent. So instead of wishing for something that was unlikely going to come true - a cure - I began to examine the disability world and see what was out there for my son in the present and in the future.
I became active in organizations that I knew could help my child now and in the future. I helped raise money for NAAR (the National Alliance for Autism Research) and have a large team – "Aaron’s Army" each year. I joined the board of directors at Westchester Arc – where I was able to experience the full lifecycle of a disabled individual. Through Westchester Arc, I found that my child, although disabled, could live a happy and productive life, could have a job, a wonderful place to live, terrific activities, and wonderful people to help care for him. I serve on the board of other organizations that represent the needs of people with disabilities, speak endlessly to organizations, and also helped to develop programs for disabled children in areas of need in Westchester County. Through my involvement with these various activities, I learned so much about the system and really made it my mission to improve it as best as I could so my son and other children like my son could lead happy and productive lives. I then met a woman, who similar to me, is an attorney and has three children, one of whom is profoundly disabled. We discussed that there was really not one place for parents of special needs to get all of the legal services that they need to navigate the complicated special education and disability law system. There are some law firms that do primarily special education advocacy, and some that do the estate planning, and some that do public benefits and guardianships. But there was no “one stop shop” for families where all the needs of their disabled children could be met in one place. Thus, the birth of my fourth child, Frishman & Faber.
Our firm, Frishman & Faber, specializes in providing expert counseling and quality advocacy for the unique needs of children and adults with special needs from birth through adulthood. We call ourselves, the "Attorney’s and Advocates for the Special Family". Our combined skills and experience (both professional and personal) enable us to serve as a resource for families of children and adults with special needs in varied settings. From assistance in obtaining appropriate special education services, to helping families obtain guardianship over their disabled relatives, to navigating the maze of public benefits, to special estate and financial planning, our firm is there for all of the legal aspects of having a child or relative with special needs. The special education system is a difficult one and it is part of our mission to empower parents and teach them their rights and how to advocate for their children so they will receive the free and appropriate services that they deserve from their school districts. Parents of children with special needs also need help transitioning from school to adult life and assistance with what that entails, including guardianship and the school districts responsibility in proper transition – we help families with this as well. There is also a whole world of public benefits and resources available for children and adults with special needs but the system is very difficult to navigate for parents and many families are not even aware that they are eligible for these services. Additionally, the scariest thing for any parent is what is going to happen to our child if something happens to us how and who will take care of them. We assist families in specialized estate and disability planning and help them secure a bright future for their child or relative. I am so happy that we are able to do this important work for families, and help through a legal system that is sometimes unjust to people with disabilities and frankly does not make very much sense.
At this time, my son Aaron is doing beautifully. He is speaking, and is a happy and engaged little boy. He has far exceeded my expectations based on what the professionals first told me. He is a remarkable little boy. He still has Autism and always will, but has improved dramatically. I know that whatever he chooses to do in his life he will be happy – maybe it won’t be "typical" but it will be what is right for him. As for my other children, my youngest son was diagnosed with some developmental delays that are not as profound as his brother, and my daughter is adjusting to the special needs world herself with a support network that I have assisted her in setting up. Are there still days that I get sad and worn out by my family’s situation – of course – but I am so proud of my children and thank God and Aaron everyday for guiding me to be a better mother, showing me that I have a strength I never thought I had, and helping me find a purpose in my life that fulfills me and will help other families like my own.
Sheryl Frishman, Esq.
Frishman & Faber
Tel: 914-241-3680