"Treatment should be obtained." "Referral was given for speech and language and occupational therapy in the outpatient setting." "He will need close developmental surveillance and he should follow with [pediatric neurologist] in six months."
These were words that were typed up in an official report from a developmental pediatrician (neurodevelopmentalist) after she evaluated my son almost two years ago. Well, technically, it will be two years in July. My husband and I both spoke with her or other members of her staff in order to receive both her report and the report from the pediatric neurologist who had sent us to the developmental pediatrician in the first place. We tried for a good long while in order to receive those reports, and after hearing promise after promise that they were going to be sent out in the mail that very day, we saw nothing until today.
Know why we finally received those reports? My son's preschool requested a copy to help them as they go into his next evaluation for them. I signed a waiver so the school could receive a faxed copy of the report, then I received a phone call with the news that the fax at the doctor's office would not accept the school's fax. I called the office again, spoke with a lady by the name of Bernice (her real first name, which goes against my normal procedure of making up names for all those I discuss), who said she would mail out a copy to me that very day. Bernice, if you are by some odd chance reading this, I said I would sing your praises if you could finally do what no one else has been able to do for almost two years now. You came through, and I applaud you. Huzzah for Bernice!
Now let me get back to those quotes. At the time of our son's evaluation, we were told that he should receive services through the school, and the doctor wanted it in writing that he should receive treatment. She even mentioned that our son should see a few other specialists, including following up with the neurologist. However, she was unable to tell me a single name of anyone in the allergy field who specialized in sensory issues and their relationship to immunology, which was something she deemed necessary. As far as seeing the neurologist was concerned, the neurologist had flat-out told us there was not much she could do for our son, which was why we she recommended us to the developmental pediatrician in the first place. Why go back to her when she couldn't do anything?
Well, that's where those reports come in and bite us. I had no idea until today that my son's development should be under close surveillance by a professional. The neurologist, whom we had been recommended to see again, had told us to just wait and see how our son adjusted to preschool and see if there were any areas of concern they noticed. Up until the bombshell the preschool dropped about concerns over our son's emotional and social development this month, there was nothing mentioned as warranting outside help. Ignorantly, we assumed that this meant it was okay to just sort of let the whole thing slide until something became an issue. If I had seen the dang report and known that close surveillance was recommended, I would have tried to find a new developmental pediatrician, preferably one who followed through and mailed out any and all pertinent reports. And did I mention they never notified our son's referring pediatrician of anything either? Nobody who had been requested to receive a copy of either report did so.
I feel like we are at square one under a time crunch of less than two months to figure out what help my son will need before potentially starting kindergarten. Most neurodevelopmentalists have a rather long wait time for an appointment, from six months to a year, from what we've seen. The closest thing we have to a current diagnosis is an almost two-year-old report that proves we dropped the ball on this one. I feel like I failed my son.
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