Advocating For My Daughter

I knew my daughter was having trouble early. To be honest, on the first night, I could tell the crying wasn’t normal. I took her to the lactation specialist when she was 3 days old, to the family doctor after 8 days, and to a pediatrician at 6 months. But everyone simply said she was fine and dismissed my concerns, saying, “she’s just this” or “she’s only that.”

My persistence paid off as she was eventually diagnosed with autism. All those feelings and butterflies in my stomach when something just didn’t feel right, which I experienced from the first time I held her with her umbilical cord so short that everyone commented on it, but no one explained what it meant, were my mother’s intuition telling me she needed me differently. Her behavior—such as needing to be held to prevent crying, screaming in the car or car seat, refusal to eat, or not talking—sent me signals that something wasn’t quite right.

I repeatedly took her to the doctor, asked questions, and pushed for speech therapy, but no one listened— not even my husband. There was something different and off about her; she appeared very uncomfortable, almost in pain from small things. She’s so cautious with food, but how do we explain all this? It seems like autism, yet no one is willing to hear me. I doubted myself, unsure how I could be right when everyone else seemed to disagree. I certainly didn’t think I knew more than a doctor.

I took her to the county for an evaluation because I didn’t need a doctor’s referral to be seen, and they said she was average. Six months later, I demanded another evaluation, and they finally determined that she’s eligible for special education services because she is below average in every category. She was 4 at the time, and that was her third time undergoing the same evaluation. That month, I called the specialist at OHSU every week to try to get in until we were seen. After three appointments and two more months, we finally got the diagnosis—level 2 autism with a profound developmental delay.

I had not imagined it.

Her diagnosis explained everything! Her eating habits, her need for constant pressure without restraint from the moment she was born, the fact that she didn’t notice her brothers until they had been home for six weeks, and even why she was almost three and still didn’t speak.

These were not quirks or character flaws, but indicators that something needed attention. Posey had autism.

There was relief in finding a word for it. There was hope that we could get the help we needed to assist her in eating and to give her a way to communicate when she didn’t have words or the ability to communicate what was going on inside of her. There was anger, too. Anger that it had taken so long to get to this point, and that I had to fight tooth and nail for a diagnosis that I had felt early on.

You play a very important role as a parent—an advocate. No one else will advocate for your child. Teachers may not suggest an IEP. Counselors will not come to you out of the blue and say they want to take your child on as a new client based on their observations. You have to advocate for your child. It may not always be a fight, but, unfortunately, sometimes it’s a fight, and those gloves have to come off.

Trust your instincts. If something feels wrong, seems wrong, or looks wrong with your child, pay attention to that feeling or that thought. You know your child best. You know their sad cry, tired cry, hungry whine, and you know when they just aren’t themselves. You pay attention to their signals, and you respond to them daily to meet their basic needs. We have to do that for the big things, too.

A family friend said their child received a late dyslexia diagnosis because she knew he had trouble reading, but thought his teachers would have brought it up if there was a real problem. My husband knew something was different about his first child, but thought the school would suggest seeing a neurologist or counselor if they suspected ADHD, trauma, or autism. These boys did not receive diagnoses of their conditions until age 13.

Early intervention will lead to a better prognosis and lifelong success. Our brains can rewire themselves and change our thinking patterns. There are more resources for young people with many illnesses or special needs, and so many resources for kids to use at school. A late diagnosis may be unavoidable, but the earlier a condition is identified and treated, whether it’s the flu or a learning disability, the better the child’s quality of life is likely to be down the road.

Tell your doctor to keep checking, tell your daughter’s teacher what you notice at home, and have a psychologist see your child if you see something that gets your inner alarm bells ringing.

Don’t let others minimize your feelings or intuitions. You know what you know, and no one can take that away from you- even your spouse. You are your child’s only advocate. Fight for them alone if you have to.

We know our children the best, and we love them the most. From a mom who wishes she had pushed a little harder: go with your gut and fight for your child to be seen, heard, and known by the professionals in their life (doctors, teachers, police officers).

Resources for Families:

Oregon Screening Project (OSP) – This parent-driven website makes it easy for Oregon families to check their child’s early development at any time, with privacy and confidentiality.

CDC’s Milestone Tracker app – Track your child’s developmental milestones from age 2 months to 5 years.

Pollywog Resources – Children with Disabilities

Linn Benton Lincoln Early Intervention/Early Childhood Special Education (EI/ECSE) – Early Intervention (EI) services are available for children from birth to three years who have developmental delays in one or more of the following areas: cognitive, physical, communication, self-help, and/or social skills. Early Childhood Special Education (ECSE) provides services to children from three years old to kindergarten age who qualify based on standardized assessment scores. Services are tailored to each child’s unique needs.

FACT Oregon – Empowers families, youth, and communities to navigate disability systems, advocating together for disability justice and policy change so that people with disabilities have what they need to thrive at home, in school, and in their communities.

Strive for Your Child’s Development – A book for parents of children with disabilities, and the first steps to help