I was really hoping that by the next time I wrote, Alex would be potty trained and all of those feelings I was having a month and a half ago would feel like ancient history. Unfortunately, that is not the case. He continued to withhold his bladder and bowel movements for weeks, to the point where he became constipated. I took him to his pediatrician and she referred us to the Pains and Incontinence Program (PIP) at Boston Children's Hospital. They see children who have behavioral issues around toileting. They got us quickly into a cancellation slot, so we had our appointment a little over a week ago.
Basically, they didn't give us much new information. We told them (a fellow and an attending physician) all about what we've tried with Alex over the last 2 years. They checked him out and made sure that nothing was physically wrong with him. Then they gave us our plan moving forward: we should keep him in pull-ups or diapers since wet clothes don't seem to bother him anyway. We'll take him to the bathroom every 1 - 1.5 hours and have him sit for 5 minutes. We are to keep everything around toileting as positive as possible - no correction procedures when there are accidents, and let him play with toys or read favorite books while he sits. When he does have success, reward him as we've been doing. They told us that, while by the calendar he's almost 5 years old, we have to keep in mind that developmentally, he can't be expected to do things that typical kids his age do. They told us that we might just have to do this for a "long time." We're supposed to fill out a developmental profile and send it to them, and check back in a month. The way this week has gone, I don't think that there will be much to report. Alex is happy to go in and sit on the toilet but he never actually pees in it.
By this time, I am, of course, fully aware that Alex has major deficits in comparison to his typical peers. It still hurts to hear doctors tell me to expect less from him, though. On that note, I'll mention the meeting we had with his preschool teacher and administrator regarding Kindergarten placement.
Ever since Alex got his diagnosis, people have asked me about his school program and his future education. All along, I've been saying something like, "The assumption and hope is that by the time he enters Kindergarten, he'll be 'mainstreamed' or put in a classroom with his typical peers." I found out this week that this will not be the case. I should have known that he wasn't ready to be put in a mainstream classroom yet, but part of me didn't really know what to expect. Right now, Alex is in a partially integrated classroom, but next year, he's going to be joining a fully separate classroom. That is, he's going into the "special ed" program with no integration other than the occasional mingling with peers during structured activities or visits into regular Kindergarten classrooms.
Don't get me wrong; I am very grateful that Alex will have access to this program. It's known to be a great program in the area, and even better, it's in his home-school, where he would be going if he was in "regular" Kindergarten. The building is 3 minutes from our house, if that. He is behind his peers in every area so I knew that he wouldn't thrive in a regular classroom. In this program, he'll get a lot more one-to-one therapy and small group learning opportunities. His current preschool teacher (whom he's had for 2 years and is wonderful) used to assist his new teacher and said that she learned a lot from this person. He'll be in very good hands moving forward.
That said, it's still hard to hear that your child needs to be in a separate program from his typical peers. I don't want him to get picked on or bullied for being different. But as a parent, I don't feel like there are many options right now. The priority is his future and if we stick him in a classroom with little or no support, his learning is going to slip, big time. As usual, I have to face reality and accept that Alex is and will always be different from his typical peers. I just hope that what we're doing with him now while he's young will eventually help give him the opportunity to pursue his own happiness in life. That's the most important thing. My parents helped to give me the opportunity to explore and find my happiness, and, God willing, that's what I'll do for Alex.
