I thought I would be more relieved.
After a year of waiting, evaluations, waiting, evaluations, and more waiting, we finally have it in our hands. Black on white. The report from the developmental pediatrician states an assessment of PDD-NOS, Developmental Delay, Disruptive Behavior w/ risk of ADHD and Sleep Disturbance. That's it. The developmental inventory shows my 50-month-old scores on average at the level of a 34-month-old, only 8 months more mature than his little brother.
According to Wikipedia, "
Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) is one of the pervasive developmental disorders and autism spectrum disorders. PDD-NOS is a diagnosis for people who are well-described by the PDD label, but cannot be categorized by any other disorder. It is usually milder than autism and has similar symptoms to autism, with some symptoms present, and others absent." (And yes, I am aware that ADHD presents with developmental levels about a third younger than chronological age, and that the diagnosis in the early years often volleys back and forth between autistic spectrum disorders and ADHD, so this is not the final word, but it would be foolish to ignore it.)
I thought that finally having a diagnosis would be a relief. That I would finally be able to say, this is it, let's get help for that. But, we always figured it was primarily ADHD. And with that, when all else fails, you can always try medications. Not that I would readily want to do that, but it was available as an option if school and family life just became too impaired. With PDD, there's no such thing. Sure, there's meds for some of the symptoms, i.e. the ADHD aspects could still be treated, but there's no pill to guarantee that my child will go to kindergarten at age 5, have a chance at going to college or having a successful career or even more importantly successful or rewarding relationships. There's no pill that will make him less challenging to his environment. There's no pill that guarantees that I won't have to worry about him every single day for the rest of our lives.
There will be only lots of love, blood, sweat and tears.
Our options are to continue the current interventions through the school district, and to add intensive private therapeutic interventions such as behavior therapy, occupational therapy, etc. Applying for TEFRA or Medicaid, and Genetic Testing for Fragile X and other conditions were mentioned.
I am not relieved because I just had it confirmed what a long and hard road we have ahead of us. Because my to-do-list just grew exponentially. Setting up and attending appointments, dealing with insurance, applying for federal aid. And most of all learning to love my child unconditionally and patiently regardless of how annoying or disturbing he can seem.
No pill. Only lots of love, blood, sweat and tears.
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