Wednesday, July 15, 2015

A Mother's Story, by Jane DuBovy

Parents:
  • Is your child being called “lazy” by their teachers?
  • Does your child have friends at school?
  • How many birthday parties is your child being invited to?
  • Do your child’s teachers say your child is “stupid?”
  • Do you spend hours each night fighting with your child doing homework?
  • Does your child come home from school and just “melt down?”
  • Have you tried to talk to the school about your child’s behaviors?
  • Are you scared for your child’s future?
  • Do you feel isolated because your child doesn’t “fit in” with other children their age?
  • Does the school make you feel like you’re a “bad” parent?
  • Does the community make you feel like you’re a “bad” parent?


I’ve been through all of this with my son.  Starting when he was about 2.5 years old his behavior changed. He was sensitive to noise and lights.  He lost his intelligible speech. He couldn’t be close to other kids without withdrawing or screeching in a high pitch voice.  He couldn't go into stores because of all the stimuli, such as lights and sounds of people.   I was scared for him and didn’t know what had happened to my delightful beautiful funny boy.  The doctor wasn’t helpful.  I didn’t know where to turn to find out what was wrong.

Finally, a friend who happened to be a child psychologist, told me to have my son assessed by a speech specialist.  I didn’t even realize that there were speech therapists for children. I didn’t know where to look to find one who was competent.  This was 17 years ago and the internet wasn’t an option. After asking around I found one.  After her assessment of him what I learned was scary.  She suspected Autism.  Again, 17 years ago that possibility was very scary. I had known about Autism but it was from the dark ages.  Children lost to their own world, refrigerator mothers and other ridiculous theories.  Institutionalization  was the only end result.  My fear pushed me to find help.

I was introduced to UCLA and the NPI program for children with Autism.  Dr. B.J. Freeman confirmed the diagnosis and recommended this intensive 8 hour per day program.  The assessments and therapies provided included Occupational Therapy (OT), Physical Therapy (PT), Recreational Therapy (RT), Language and Speech (LAS), Behavior intervention, Academic preparation and Social Skills (SS).  In addition, he was going to be part of research regarding the development of  “joint attention” in children with Autism.  I had no clue what all of this was.  I began my education in learning how these therapies could help my child.  The first day I left my child at this program which was conducted behind locked doors at the Neuropsychiatric Institute I broke down and cried.  What was going to be in store for my child? Am I doing the right thing?

This program was a life saver for him and me.  They provided me with parent training, information and support. They helped toilet train my child, introduce him to sharing with other children, finding his speech, learning how to play, de-sensitizing him to textures, learning to coordinate his fine and gross motor skills and start to find his way back to “typical.”

After 10 weeks of this program (which was very expensive but luckily good insurance covered the cost) I learned that the next step was to contact my school district, Los Angeles Unified, to assess my child for services.  I was shocked! I didn't even realize that school districts provide anything to children who were not attending school or at least old enough to attend school.  When I learned that starting at age 3 the district was liable to provide educational support to my child I was ready to hop on that train.

I took a letter to my local elementary school, Marquez ES, asking for assessments in all areas of suspected disability.  I wouldn't have known what those areas were until my parent education at the UCLA NPI program.  I also didn't realize how long it would take for this assessment process.  I was lucky, the assessment plan came right away and the assessments and an IEP meeting  were conducted within the statutory time frame of 60 days.  (By the way I had no idea what an "IEP" was)

I thought that with the wonderful assessments and reports from the UCLA specialists the District would not have to conduct all the assessments.  Again, I learned that I was very ignorant of this process.  The District did review the assessments but it did not accept the recommendations by these autism specialists.  I was shocked to hear the District offer an educational plan that would not address my child's unique needs. (unique is another key word that I learned.  The "I" in IEP stands for individual and that was what each child is entitled to)

What was I supposed to do? The District's offer of "FAPE" (free and appropriate public education) looked nothing like the program recommended by the UCLA team. FAPE is mandated by the federal law called for short IDEA (Individuals with Disabilities Education Act.)  I wouldn't accept anything less than what the experts stated was necessary for my child. I had witnessed the effects of untreated autism through my master's program in psychology (in the 1970's) and I was not going to deny my child whatever it would take to help him.  So I fought.

I know, being a lawyer you would think that this is what I do all the time so what's the big deal? It is a big deal when it's your child your fighting for.  There is no impartiality, no weighing the options, most importantly NO COMPROMISE.  I filed a legal action called a due process complaint.  I didn't know how to do this or what it should contain.  I had to learn all of this and quickly as I felt that each day without appropriate services was a day lost permanently.

Within 30 days or so of filing the due process complaint I attended a mediation with the District.  Again, I was very lucky to have such great support.  I had an advocate from PAI ( Protection and Advocacy now called Disability Rights) who was extremely experienced with the process attend the mediation with me.  I also had the support from my local regional center.  (that's an important resource for parents of children with developmental disabilities funded under the Lanterman Act in California).  I had really knowledgeable people from the District who reviewed all the documentation and listened to my advocates.  My case was settled and my child received all the recommended services.  His preschool program that he ultimately had included enrollment in a typical preschool  5 hours per day, 1:1 trained behavior aide and behavior supervision, private LAS, OT, Social Skills and RT.  He received this program for 3 years and the District paid for it entirely.

Each year I reviewed his program with his private providers and the District at his annual IEP meeting.  The program was tweaked depending on his ever changing needs.  During 4th grade he started experiencing more separation from his peers as the demands for participation in team sports (especially important at that time for boys) were very challenging for him.  We found tennis and that became his life saver. (By the way there is a charity now called Aceing Autism that I fully support.  it is run by an amazing man, Richard Spurling, who combined his love for tennis with his knowledgeIof autism, check it out).

Along the way I had to file a few more lawsuits to insure my child's rights. One more against the District, which actually went to hearing and we won. (This was for RT services)  I think the toughest thing is to sit and listen daily to witnesses talk about your child and then having to testify yourself.  I did not come through this without shedding a few tears.  Another lawsuit was against the regional center for RDI services (relationship development intervention, go to www.rdiconnect.com to learn more of that service). Again, had to go through a trial, but with the wonderful experts we won.  Finally, had to sue the Boy Scouts under the ADA (Americans with Disabilities Act), we settled and I'm forbidden to discuss the settlement but let's just say I'm glad I did it.

Middle school was where the next major challenge occurred. Wow, while middle school is tough for the "typicals" it was impossible for my child.  He knew he couldn't navigate the sophisticated demands of this social domain.  Did I mention that we live on the Westside of Los Angeles County? That is a very aware group of kids and they were not tolerant of anyone who was different.  They weren't bad kids just trying to survive these years themselves and there was no room for the "unique."  Another brief fight with the District and my son was moved to a non-public school (NPS).  He attended a program at this school that specialized in serving the needs of high functioning autistic kids.  This was the right move for him.

He thrived in that environment.  At the time he attended there was a wonderful teacher, a gifted program and a very enlightened and caring principal.  He made friends, discovered a music buddy (my son plays drums)  and even learned about girls.  Although this was the right environment for him there were still the annual IEP meetings and his unique needs continued to change.  At one point he needed a 1:1 behavior aide due to his work avoidance, but that was addressed.  He went to prom (actually he DJ'd at the prom), decided on music as his career choice and, yes GRADUATED!!!
Since that time he has continued to work on music production.  He's attended MI (Musician's Institute) in Hollywood, found a love in the production end of the music business, writes his own music (EDM, not my type of stuff but now I sound like my mother when I brought home a Bob Dylan album) and pursuing his dreams.  He is a work in process.  He continues to have regional center support so "Mom" isn't the "go to" resource for everything. He has a driver's license, a car and a job that he got on his own.

This saga isn't over but did I even think this was possible 17 years ago?  I had entered a dark tunnel, scared, ignorant but determined.  I'm really glad I didn't know all that I would have to do over the next 17 years because it would have seemed overwhelming.  I've been very fortunate to have wonderful supportive people along the way.  I developed such a passion for this area of law that I completely changed my focus from bankruptcy to special education.  I love what I do and not many lawyers can say that after practicing for 34 years (yikes, I can't believe that either).  What I love most about what I do is being there for the parents.  Giving them hope and encouragement.  Yes the times have changed.  The number of children diagnosed as to being on the Autism Spectrum has jumped from 1 in 10,000 to 1 in 64.  I have no explanation for that increase but it doesn't matter to a parent if you have that child that is the "1".  The fight is tougher but still winnable. And it is worth it.  Every day when I have the chance encounter with my child (who is now a 6'2" grown man) I see a miracle and know that it is possible for every parent to see a future for their child that a diagnosis of Autism seemed to curtail.

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