3/15/10 "fear"

Wow, last week was not so great. To sum it all up... I'm scared for many reasons. Last week we found out our daycare provider is retiring, relatively soon. This sent us into a week of sleepless nights, financial planning, appointments, tears, etc. The boys have been going to the same provider since they were 6 months old. Speech, occupational and behavioral therapists have all been welcomed into her home not only to work with TYler but to show the provider how to best work and communicate with Tyler. She accepts all of Tyler's diet restrictions and cleans up after the kids immediately so Tyler cannot get into any of their crumbs, etc. She is understanding that Tyler does not nap and accepts him in the middle of the afternoon after he gets out of school. The comfort I have with her and my children is as if she were a grandparent. She once even came to a doctors appt to bring Tyler rice milk because they needed him to pee and he wouldn't drink the juice I brought and all they had was normal cows milk. She brought us juice and medical supplies when we were all suffering from the norovirus. Her daughters are the only babysitters we've ever had. Their family has become an intergral part of our family and part of our support group and losing that is heartbreaking.

The thing is, like normal, I don't really worry about Ben. I'm actually excited that this is forcing us to get him into a preschool setting which he really needs and before I couldn't figure out a way to make it happen. The problem we ran into, as with everything, is $$$. Daycare/preschool costs in the area are twice as much as we are used to paying and since we had already ran out of savings for speech and some of the other things we do for Tyler, it created a huge headache for us as to figure out a way to make it all work. So I'll cut to the chase and not bore you with details. We figured out a preschool for Ben close to our home that's affordable and should be a wonderful opportunity for him. We think we may have found a place for Tyler to go after school and when he's not in school he can join ben (too expensive for him to go to the other place full time i.e summer, etc.) So all and all we should be able to manage this schedule and be able to work relatively normal work hours too which is going to be nice.

My struggle right now.. is trusting Tyler with someone new. I went to a facility on Friday that we were thinking about taking Tyler. They had mentioned to stop by anytime. So I figured after TY got out of school would be perfect since that's the time he'd be getting dropped off by the bus. The facility is relatively small and it was packed full of napping kids on teh floor, the preschool room was also packed full of sleeping kids and I quickly realized that there will be nowhere for Tyler to go. He doesn't nap after school, and definetly would not be able to nap on a mat in a room full of new toys. we felt like we were a nuissance to everyone tehre for stopping by (well I did anyway), we got yelled at for a toy Tyler went to play with so we quickly left and realized that place was nto goign ot be a good fit for Tyler. At miss karen's the kids were all tucked away in rooms napping so Tyler was able to play quietly and not disrupt anyone. Plus I know Miss Karen never got mad at him if he wasn't sleeping. I felt at this place, he'd be creating a disruption that would possible wake up the other kids and upset the caregivers (who are so young) and then they'd get frustrated with Ty and since he can't talk or exspress himself, well I just worry about his well being. There was some level of comfort I have with Tyler going to the same place as Ben as Ben can alwasy be Tyler's voice. With Tyler going somewhere different than Ben, I will not be able to rely on that voice.

Plus, my biggest concern is right now, Tyler is a lot to handle. I wish I could go back a month and have that Tyler back again. Something has happen and we thought it was the B12 shots but now we aren't sure as his behavior is not improving. I fear what the future holds for us if he doesn't go back to normal. we were just getting excited about going on more trips to see family, possibly doing a family vacation, going out in public more, etc. If he continues the way he is.. i'm not sure. It will put an incredible amount of pressure on me. You see when Tyler is like he is now, I seem to be the only one that not only understands him but that he understands and that he seeks and that he listens too. So going on trips, public, etc. that puts a lot of pressure on me to keep him happy in a time when it's kind of getting hard, so that everyone else can have a good time, its just really tiring and the more "new" things we experience the harder it is for me to maintain his regulation. Plus then I miss out on interacting with the adults and also miss out on any fun ben is having. I just want the old Tyler back.. we were making such good progress.. I hope he isn't gone for long. We have an appt with his DAN doc/pediatrician next week so we'll discuss our concerns with him and I'm sure there will be new biomedical supplements to try which will be more money.. it's a vicious cycle sometimes. Right now, I'm just fearful of what the future holds for us. I'm trying to be optomistic and am very thankful we found a way to get Ben into preschool, but emotional and financially, we are struggling right now. I need some things to turn around for us and give us some inspiration soon.