Every year, right around this time, I give a big, fat middle finger to a pediatric developmental therapist. Yep, that’s the kind of girl I am…I send a telepathic middle finger to a woman who tries to help children.
And yes, there’s a little bit more to the story.
In short, I have a daughter who has struggled developmentally since birth. Although she is age-appropriate now — in fact, I would call her developmentally kick ass — there was a time when we had a lot of concerns. Speech delays, fine motor issues, toe walking, sensory issues, motor planning, and the list went on and on.
But we were on it like white on rice. Starting just after my daughter turned one, we started receiving early intervention therapies.We sought out a physical therapist that integrated sensory play into their sessions. We had her screened by one of the top neurological pediatricians in Chicago. She went to a special preschool with a speech and occupational therapist in the classroom. We tested her for autism since she had several behavioral issues listed on the “checklist.” Various doctors also tested her for every other behavioral disorder that ended with an -ism or syndrome or -axia. We were going to do everything and anything for her to succeed, just like any parent would.
And she was succeeding. Very slowly, but she was making a little bit of progress considering we did not know what we were treating. She received five different diagnoses in four years, but none of them seemed to exactly fit. And although she was progressing in some areas, her social skills were almost non-existent.
That’s why when our speech therapist — a woman I loved like a member of our family — suggested we run one more diagnostic test to see if she qualified to have a developmental aid in her preschool classroom to help her with her social skills. I was all for it. My husband and I embraced the philosophy that therapy would never hurt our kids, and the farther we could get my daughter before entering kindergarten, the better.
A nice woman — a child psychologist with the letters Ph.D. written on her business card — came to my home to discuss my daughter with me. I was in good spirits since we had been seeing a lot of progress lately. “She’s been improving a lot lately, but I will give you all the background.”
This is the part where I would pull out two or three binders of health assessments, Individualized Education Plans (IEPs), medical files, etc. We chatted about how I saw my daughter, her positive relationship with her sisters, and my concerns over her lack of desire to interact with other children. I answered all sorts of questions for this woman honestly. I wanted to help my daughter in any way possible, and I knew how the system worked.
I laid it all out for her: Yes, she had a lot of sensory issues…she was a toe walker, she chewed on things incessantly, she rubbed her hands on soft fabrics over and over; but she liked to be held, gave great hugs and liked a routine. No, her speech was not very good, and she could barely hold a short conversation, her eye contact was poor and she did not like change. She often “scripted” words she heard off of TV shows, which was a good sign she was starting to develop language, but also a sign something was amiss.
She listened and took notes. She watched my daughter play with some toys. She drank the tea I offered her. I thought this nice lady and I had bonded when I sent her off to observe my daughter in her preschool setting the next day. We were simpatico. Or so I thought.
Two days later I received a phone call: “I know you don’t want to accept it, but your daughter has Autism. PDD-NOS specifically. I am quite confident of that. You need to listen to me.”
I felt like someone had slapped me. “Wait a second…we have already had her screened for autism, and the doctors do not believe this is her issue. I did not even know you were testing her for anything specifically….this was just for additional support in the classroom,” I stammered through tears.
“PDD-NOS often gets diagnosed later. I am extremely qualified in this area. After talking to you I understand that you are in denial, but your daughter needs help. We need to get her additional therapy as I think she will need a full-time aid to get her through kindergarten.”
In retrospect, there are a million different words I would have liked to use to end that conversation differently. There are a million different things I would have liked to tell that good doctor. There are a million different ways I would have given her the proverbial middle finger.
Because sometimes De-Nile is just a river in Egypt; but that didn’t mean that woman did not shake me to my core.
For several weeks I didn’t sleep. Did I waste three years of my daughter’s life not treating her appropriately? Could I have made changes in her diet that could have impacted her health and well-being? Was I worried about a stigma more than my child?
I did research, contacted friends who had children with autism, and talked to my daughter’s therapists, who were all now toting the proverbial line, using phrases like “She is more qualified than I am to make that sort of diagnosis” or “Even with an autism diagnosis, it won’t necessarily change her therapy regimen.” I was feeling pressured just to move on with it all.
But that was not the point. In my heart, I knew this was wrong, and if she was autistic, I would be fine with that. I just wanted to help her appropriately. But the doubt kept creeping in.
My husband and I decided that we needed a second opinion, so based on the referral of a friend, we set something up. Unfortunately, it was not before we had to meet with our early intervention providers who wanted to amend her IEP.
The only time in my entire life where I have threatened legal recourse was during that meeting. I refused to sign the report and risked losing a portion of my daughter’s IEP. We discussed the diagnosis and why I did not concur. I encouraged a reassessment so they could see how she interacted with her sisters. I talked point to point on the evaluation to clear up some mis-reads. Finally I said: “Just give me two weeks to get a second screening completed. If it comes back the same, I will sign it. But we will not add this to my daughter’s file until that time. Period.”
One week later, we had a full scale behavioral assessment completed on my daughter. Before we had even left the building, the team completing the interview told us they did not believe my daughter fell on the Spectrum. She had some developmental delays — some of them significant — but the test results and the interaction she had with the team did not lead them to believe she had PDD-NOS.
“What do you think it is?” we asked.
“She does not fit a specific diagnosis that we can tell, but motor planning seems to be at the crux. But she is a happy, good-natured little girl making progress. Keep doing what you’re doing.”
As any parent of a child with special needs can tell you, I was both elated and dejected at the same time. I was happy with the outcome, but still frustrated with the lack of answers.
With the report in my hands, I met again with my daughter’s team. We amended the report with the new assessment, and with a lot of aggressive persuasions, she received the additional support even without the PDD-NOS diagnosis.
The last words the child psychologist said to me was, “I think this is a mistake.”
And this is usually the part where I give her ten middle fingers in my head and a series of expletives that would embarrass my family. It is my own form of therapy, along with a big glass of chardonnay.
But this year, now that my daughter is thriving academically and socially, I want to thank that woman, because without her, I would not be the advocate I am today for my kids.
Because of her, I became even more aggressive in my daughter’s care. I read more books on helping kids with social issues, employed more strategies at home, and had more discussions with her therapists on care options. The more educated I was, the more confident I became as her advocate, the more confident I became as a mom. And because of this, I pushed our physical therapist to send us to an orthopaedist that changed my daughter’s life, the doctor that finally put the round peg in the round hole — my daughter had a mild case of cerebral palsy in her lower extremities.
While the news was a shock since most cases of CP are diagnosed at birth, I was relieved at the same time. CP often causes issues with speech and fine motor skills, but it is non-progressive, which is why we saw her continue to improve from a developmental perspective. I also found that I had several of the risk factors that cause a CP birth, including carrying multiples, pre-eclampsia, pre-term contractions and pre-term birth with associated low birth weight. Other doctors and therapists had missed it since we felt her toe walking was a secondary symptom to something else. No one had looked at it as primary.
My daughter had surgery to lengthen her Achilles cords on both her legs five years ago. Being able to stand normally centered her and improved her speech. Fine motor skills became easier. Her newfound confidence enabled her to be more social. She began making progress in leaps and bounds as opposed to bit by bit.
And she walked into kindergarten the next year on two flat feet and without an aid. It was a victory for our entire family.
And while the CP still impacts her speech at times, she has continued to flourish in every way possible, and we could not be prouder.
But I’m also proud of myself. I am not sure where we would be right now if I had accepted this woman’s diagnosis. This woman who was qualified, was educated, was a Ph.D. A woman who knew much more about developmental disorders, helped many more children, studied many more cases. This woman who looked me in the eyes and called me out.
But this woman — this woman who I want to believe was looking out for my daughter’s best interest — was wrong. She was wrong about my daughter and even more wrong about me.
Because the only thing I was in denial about was my ability to advocate for my daughter. I share my story because raising kids — especially those with special needs — is freaking unbelievably hard.
We don’t need people to make it harder. We need people who will work together with parents, not against us. We need people who listen and help us advocate, not those more interested in being right or shoving their expert opinion in your face. We need people who empower us and feed our confidence, not those that target our insecurities.
And when you get to the point that you just can’t take it anymore, there’s always the telepathic middle finger. It’s great therapy.