Our next meeting happened in late 1990 with one of MCV’s leading pediatric neurologists. We were feeling better about things at this point, given the results of the previous two tests
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. I guess you could say we were “on a roll”. This visit gave us less to be happy about. The doctor spent a great deal of time working with Ben. When Ben quickly tired we scheduled an extra appointment so he could do a thorough analysis. I appreciated that he was very forthcoming in his findings as well as his impressions about Ben’s future potential; even though it wasn’t exactly what we wanted to hear. He first gave us a baseline to help explain the trajectory that Ben was now on in terms of his development. Here is what we were given (Ben was 14 months old at this time):
Milestone Age Expected Age Attained
Gross Motor:
Prone: Head up prone 1 month 7 months
Prone: Chest up Prone 2 months 11 months
Prone: Rests on Forearms 3 months 14 months
Prone: Up on Wrists 4 months not yet
Prone: Rolls to Supine 4 months 11 months
Supine: Rolls to Prone 5 months 12 months
Sits with Arms in Front 5 months not yet
Sits Steady, No Props 6 months not yet
Crawls Quadriped 7 months not yet
Prone: Comes to Sit 8 months not yet
Motor Adaptive:
Unfisted 3 months 5 months
Bats at Objects 3 months 8 months
Midline Handplay 3 months 6 months
Hands Grasp in Midline 4 months 6 months
Active Reach and Grasp 4 months 10 months
Brings Objects to Mouth 5 months 10 months
Transfers 6 months 13 months
Finger Feeds 8 months 13 months
Cooperates with Dressing 12 months 13 months
Receptive – Social Smile 5 weeks 4 months
Coos 8 weeks 5 months
Receptive –Orients to Voice 3 months 8 months
Razz 4 months 10 months
Ah-goo 5 months not yet
MMM sound 5 months 13 months
Babbles 6 months not yet
Receptive – Gesture Games 9 months not yet
Receptive – Understands “no” 9 months 14 months
The doctor’s findings were that Ben’s strongest area of development was his receptive skills, where he was performing sometimes at a 9 month level. However gross motor upper body and expressive abilities were running more in the 5 month range. Gross motor lower body ability as at 3 month level and fine motor skills were at an 8 month level. Because of the variance he said he couldn’t tell how much his expressive skills could be being hindered by the Cerebral Palsy. He also gave us an assumption about Ben’s habit of throwing his head back. As I said, the conclusion had been that this was a kind of stimulation due to lack of neural control. However, the doctor wanted us to check to see if it wasn’t at least partly due to pain in the esophagus (Sandifers Syndrome) as a result of reflux. So off we would go for yet another test. This time it would be a barium swallow. The doctor’s conclusions were all very open-ended. He was very clear that Ben was not stuck in his current level of ability and that we should do everything possible to help him reach his full potential. However, he tempered this with a list of possibilities that we needed to prepare ourselves for; some of those being scoliosis, hip dislocations and seizures. This meeting certainly was not as uplifting as the meetings with the urologist and heart specialist, but all we could do was forge on.