The Emotional Roller Coaster and the Early Years. Testimony before the Senate Blue Ribbon Commission on Autism in Sacramento CA

Donna Ross-Jones Testimony before California Legislative Blue Ribbon Commission. Fall 2006

Topic: The Emotional Roller Coaster and the Early Years

When I sat down to give this testimony I knew I was not speaking for my family but for every family who had been impacted by autism, who faced the same daily challenges I faced. 

Thank you Dr.Vismara and the commission for giving me the opportunity today to talk about the first years, diagnosis and early intervention, And the emotional roller coaster.

My names is Donna Ross-Jones, I am the mother of two wonderful children. My daughter Evyn 13 and my son Nicholas 8, who has autism. I am a business owner, and the co-founder of a non profit, Special Needs Network.

The first thing you need to know is that parents of children with autism are isolated by the illness and societies ignorance. Our children jump up and down, flap their hands, make noises, have tantrums and lack the simplest of social graces. Emotional and physical survival is measured by our ability to cope. From the moment you know something is wrong, to getting diagnosis, obtaining healthcare, therapy, education, we enter a world of closed doors, rejection and “do it yourself” healthcare.

When a child is diagnosed with cancer, families are surrounded by professionals, who surround you by more professionals and they tell you what to expect and who is going to help and how, the system takes over. Not, with autism, you fight to get a diagnosis, then you’re sent home and it’s all up to you. Alone, we have to overcome the denial, understand the illness, cope with the grief, at the same time you have to learn the system, find out what helps and then to get help. And most of us are forced to do this while being completely sleep deprived because most of our kids don’t sleep through the night.

Many can’t handle the emotional rollercoaster 86% of families, where the children have autism, the parents divorce after diagnosis. I receive e mails on a routine basis talking about families where the mothers or fathers have killed their children, and then themselves because they could not cope.

A day in the life of a family with an autistic child, is inconceivable to most. My son, is 8 years old and at first glance he looks like a perfectly healthy boy, so when I go out and people see him yelling and pulling my hair, they just think I’m a bad mom. He only sleeps through the night 3 days a week. He has no understanding of danger, he cannot tell me when or where he hurts, he is allergic most foods and I always have bruises and scratches from his tantrums.

When I see him I see a beautiful boy, who is clever and who loves to read, adores the alphabet, dictionaries, Disneyland and animals. He is in my eyes extraordinary and getting him to this point has been a journey that has not been ordinary or even challenging or difficult but often torturous, inhumane and incomprehensible.

At age 20 months my son lost his speech, by 22 months he had become detached from our family and his only interest was crawling out of his crib in the middle of the night to play videos.

His pediatrician, told me “Donna I know you, he’s just spoiled” He’s had ear infections, pneumonia he’s been sick and he has developed a speak delay and she scheduled him for a hearing test.

A week later, the daycare provider who was watching my greeted me at the door, handed him and said , sorry I can’t watch him anymore this isn’t the place for him. She gave me a special needs phamphlet and said, Read this. I told her the Dr say’s it’s a speech delay, and she closed the door in my face. I told myself, some people just can’t handle kids who are a little different. I told myself, don’t worry.

But I was worried and I began to tell friends what I was noticing, they said Don’t compare him to his sister, boys develop slower than girls. Just wait, see what happens.

Nicky drifted further away and my fear increased. I began telling everyone, finally a friend said call the regional center and ask for an evaluation of Autism, I don’t’ think he has it but call. Oh, she said don’t’ let him sleep the night before because they need to see him at his worst, and don’t say he can do something because he does it sometimes. – They might not help you. I located a regional center and was set for an evaluation in one month.

“Autism” Now I have a word. I go to my computer and all I could find was “a permanent developmental disability requiring life long care for which there is no cure” and the panic began. I told myself you don’t know, just hang in there. My husband said, Donna you’re over reacting they call them milestones because it’s an idea not a fact, stop over reacting. But I know something is wrong. By this time, I can’t work because I am spending my entire days on the phone and caring from my son.

Next a friend referred me to a speech therapist, I told her what was happening and she yelled at me. Go Now and get HELP. If you were here I would have you in my office today. What’s wrong I asked, she said I don’t know but you need help now. Go Now FIND HELP, I don’t care where just get help.

Help Where, From Who, For what? I screamed and cried. I was frantic and paniced I was losing my my son, but to WHAT. No answers – no reason why. I called my insurance company, Surely they would help. I said my son has stopped talking he needs speech therapy. They asked for what diagnosis, I told them we don’t have a diagnosis, but he can’t talk and he needs therapy. They apologized and said they couldn’t’ help without a diagnosis. Armed with my new word, I said he might have autism, they said sorry Autism is not a covered medical condition. I will never forget the anger I felt on that day.

Then came Nicky’s hearing test, the first test was inconclusive the second showed no hearing impairment. I asked the nurses at children’s hospital, if his hearing is okay, then what is wrong. They looked at each other then at me, we couldn’t say. You might want to contact our speech therapy department. Again, no answers.

Another mother, said you need a “developmental peditrician”. I found 5 within an hours drive from my home. None could give me an appointment sooner than 6 months and some were booked for a year. How can I get help now, when no one can help me. The doctors had waiting lists from 5 months to 1 year, only two took insurance and the others charged $1,800 for an evaluation. I didn’t care, I just wanted help.

At this point Nicky is getting worse, he didn’t sleep through the night, he only wants videos and the alphabet, and the runs back and forth all day, he doesn’t come when I call…and when he falls or hits something he doesn’t seem to cry no matter how hard. He has developed diarrhea and doesn’t want most of what I offer him to eat. He’s so skinny and I’m afraid to take my eye’s off him. My daughter comes and goes, but I hardly see her.

45 days later, we get a diagnosis of Autism from the Regional Center. They agreed to give Nicky 25 hours a week of therapy some that we drive to and some in home intervention. I quickly realize that I can’t work and care for my son, these people are his only hope, this therapy is all that is proven to help, I have to make sure he get’s every minute he can!

Therapist begin coming to our home working with Nicky. I’m relieved I think, it will be better now. Two months later the revolving door of untrained therapist, for whom this job, is just a stop on the way to the next position, begins. I can’t make a schedule or go to work, because I never knew when they won’t show up. I oversee Nicky’s in home therapy, take him to outside therapy (often driving 1.5 hours for a 50 minute session). I’ve enrolled in parent education classes so I can learn different therapies. I’m trying to give my daughter more time to compensate for all the time I need to give her brother. I’m going to more doctors, learning everything I can….I still don’t know what is going to happen to my son. I am like a frantic wind up toy, just trying to keep things together.

He is 3 and now it’s time for school. This new system, is less friendly than the one before. Now I am in a world of acronyms I don’t understand, families are telling me about horrible IEP meetings, where my sons educational fate would be decided and there would be hugh educational teams representing the school on one side of the table and you on the other and when you would talk, they would get up and leave the room to discuss what you said, and then they would return, telling you about their plan, which was not at all like your plan. Intimated by the size of their team and experts you would agree, unless you were a parent was prepared…PREPARED FOR WHAT. I remember thinking that sounds ridiculous.

Nonetheless, I went into my first IEP armed for battle, scared for my son. I sat in a room with 9 people who wanted to tell me what my son needed. Thank God, I had already received early intervention and gotten my own evaluations. Most of the decision makers knew nothing about autism and the staff had not been trained on any “best practices” or how to work with them. After 5 hours we agreed to a plan.

I remember being physically ill. It was my first lesson in “become a warrior or lose your kid”, it’s up to you.

I became obsessed in managing his care, making sure people showed up, making sure he didn’t miss an hour, keeping schedules, finding more doctors, going to classes, reading the latest information. I would go to his school, I made sure people knew someone cared about his child. I was becoming an expert, his warrior and they wouldn’t be able to hurt my kid.

Today, I know that much of my actions, like why I would go crazy if he missed just one hour of therapy, was because it the only way I knew to deal with the grief of lost expectations. A grief that has moved into my life and visits me everytime a milestone is not met.

My son won’t be a basketball star, homecoming king, a husband, have an exciting career, the cool kid, hang out with the boys and talk about girls. In fact he may never carry on a typical conversation, he may never be able to tell me how he feels, he may never be able to live independently, and he may never marry or have children, or look me in the eye when I’m old and say “mommie” don’t worry I’ll take care of you.

It has been 6 years since my son was diagnosed, and the challenges repeat themselves over and over again. I am very proud to say that my work has not gone without great reward. Nicky is in a typical class at grade level. The kids are kind to him and he loves going to school. He has wonderful support and his language is improving. We can drive on the freeway and pass McDonalds and he won’t unbuckle his car seat and attach me out of frustration.

Six years later I am still a warrior, in a world that doesn’t know where he fits and has little understanding. I’m still nervous to take him to friends homes, because he will breaks things, seeks out anything mechanical, and can’t say “hello”, “how are you”, or ask for what he wants. I have never returned to working full time, I recently became a single mom, and I spend almost everyday engaged in a battle to give my son stability, consistency and good care.

It is my hope that this commission will be successful in making recommendations that will improve the lives of families living with autism.