Lori's Story
It has been a long and bumpy road since the very start. We joked in the hospital that William was the only baby crying ALL THE TIME. We joked in preschool that he was a rebel getting bounced out for not following the rules. When his youngest brother started sleeping through the night at six months we joked that maybe William would start sleeping through the night by the time he left for college. We did a lot of laughing because that is how we cope in our house, but a great deal of what has happened is not very funny.
At the age of four after lots of doctors, lots of research, lots of therapists, and lots of time, William was diagnosed with Childhood On-set Bipolar Disorder. With a diagnosis we now at least had a plan - after adding medication and new therapies we saw some changes, but over time we began to understand that there would be no magic solution. All the symptoms that brought us to a psychiatrist in the first place would lessen, but not go away, probably ever.
The challenges of being a little kid with a grown up disorder would be many, but we found with a great deal of planning and structure we could get through pretty much anything. However, the biggest challenge was school and everyone - teachers, aides, case managers was trying their best. It was impossible for William to learn when he was so distracted by EVERYTHING else. His good days were amazing and productive, but the good days were way too few.
William would come home and fall apart because he had no friends. He spent many days home "sick" in first grade because he was too fragile to go to school and have another bad day. He was suspended pending psychiatric evaluation because he talked obsessively one day at recess about poking his eyes out and reaching into his brain to "fix it". On our very worst day he talked about wanting to be bones because being him was too hard...he begged me to take off his skin and make him bones so he wouldn't be him anymore - that was a week before his seventh birthday...
William began attending Newmark this summer and for the first time in a long time we are collectively breathing a sigh of relief. It is hard to look back at where we've been because right now we feel so positive and hopeful. He is smiling and happy to go to school. He is talking with enthusiasm about his "friends" and the activities of the day. He comes home and wants to play with his brothers and only throws a mini-fit about doing homework:-) For the first time in a long time, good days are our new normal and everyone, even William, is laughing.