I have read a post that covered this topic on a friend's blog- the family also has a disabled child and has struggled with feeling like a shut-in. I didn't think too much on the topic until I started feeling that way myself. Carter can be extremely difficult to take places sometimes, depending on the time of day or even just his mood. He seems to be more sensitive and difficult lately, and it's hard to predict when things will go well. We've frequently left church I don't even know how many times, because Carter freaks out and cries and won't calm down. The only solution seems to be to leave, and he is calm once in the car or home. Last Sunday we tried leaving him in his stroller, and we actually made it through all 3 hours of church. I think it was successful because he liked being able to look around and not be held or touched. I hope this solution can help us as we move forward, and eventually I hope a wheelchair will be even better.
After almost giving up on even trying to go to church, we started having problems with other things. We've had to leave family dinners early because Carter gets upset at something and won't calm down. Again, just putting him in the car and driving makes him super happy. I can't just drive around all day all the time, so obviously not a solution. Then it's happened where he is sick or in the hospital, and we have missed family events and/or parties. We have also missed a birthday party because Carter just could not calm down. I tend to lose my cool pretty quickly in situations like this; maybe because I'm pregnant and not feeling well anyway, but also because I don't feel like Carter is growing up or that he is behaving more like a toddler or child. I feel more than ever he is a baby, because all he can do is cry to communicate his distress. I wish I could reason with him by talking or even signing, but we are still reduced to panicking in a public setting while trying to solve our child's issues while he continues to scream and cry ever louder. I've mentioned this before in other posts, but touching or holding him just aggravates the situation. A car ride, or sometimes even medicine is the only real solution.
I've become more and more frustrated as the events have piled up that we have been missing out on. Not that they were all super great or exciting anyway, but it really sucks to feel left out. I feel as far away from normal as possible some days. I struggle with feeling "normal" or accepted even when Carter is behaving well. Now that his unpredictable behaviors have us running for the car often, I don't even feel like trying anymore. I know that if he is napping, absolutely nothing is worth waking him up for. I know certain times of the day to avoid, but it isn't always predictable. Because of my hubby's work schedule, I am often alone with Carter when I wish I could get out and go places and do things, but I know it's not even worth trying. Being pregnant makes it really difficult to carry him around, get him in and out of the car, etc. So these activities will eventually have to become limited on their own. I'm sure it's a combination of the dreary weather, the dark, my pregnancy, and Carter-- but I sure feel like a loner or hermit a lot of the time. I often find myself feeling very unfortunate in my lot in life, and trials. I find it hard to find the motivation to keep going each day.