When The Answers Don't Come Easy...

Yesterday morning I took Eric to his appointment at the feeding clinic so they could check his health since we are doing the cup transition. His senior therapist from the ABA provider was also present at this appointment. Everyone is happy with the progress that Eric has made thus far. The opportunity is good to get this job done. The problem is that his weight has gone down and he starts to dehydrate if I just give him the new cup. His consumption has gone down by half. The nurse and the psychologist were concerned about this and told me it was a good thing the nutritionist wasn't there or she would have had a heart attack. Nice... Totally cutting out the old cup greatly increases our chances of success, but we can't let him get sick either. Dr. F (the psychologist that is in charge of Eric's case) told me that there was an opening for the inpatient program this coming week because someone cancelled, so this may be a good time to get him in. The appointment was Friday, and they wanted to admit him Monday! This would have been for 1-2 weeks. This was very short notice. I have nobody that can watch my other 2 kids while we did this. Dr. F said I didn't need to be there all the time since they were really not teaching me any new techniques. Eric has not spent the night without me yet. We live in Kenosha, the hospital is in Milwaukee about 45 minutes away. I can guarantee that Eric is going to be a problem for them at night, and they would be calling me back really quick to come there because they can't deal with him while they have sick patients to care for. They won't let my other boys stay there too, so there is a big problem. I realize that he has to learn to go to sleep at night without me present, but I don't think this is the way to do it. With all of that said, there is no way we can do this right now. I understand that hospitalization is going to be needed to accoplish this goal safely. We can keep trying at home with me and the therapists but it's going to be an uphill battle with frequent appointments in Milwaukee to monitor him. On the other hand I have 2 other children that need me too. This is where this gets sticky and very frustrating.

Once I told them that the hospitalization just was not going to work, Dr. F and the nurse seemed understanding, but said they would leave the option open. They then left and the ABA therapist and I were alone with Eric. The therapist then said that I had an excellent opportunity to get this taken care of and that I should really find a way to try to make this work. She said that he can learn to handle nights without me and that it really is a short period of time. Of course she had to add this was important for his health and that I really needed to do whatever possible to take care of this. I was asked if their father could help with this. Yeah right!!! He resented having to take his precious vacation time and having to care for the other 2 kids the first time we did this last year and basically said this was a waste of time. There was some progress with that hospitalization, but it was minimal and not enough to satisfy him. I can't convince his father that this is important to do whatever necessary, trying to sell this to others so my other sons can be cared for amoung other things such as our house, the bills,ect is darn near impossible. If he had a heart problem, cancer or something else physical wrong with him people would help no problem. It really is not fair, but I have to admit I can see what others are saying. This is something that is hard to understand, and don't happen often. Since this is a feeding issue and a psycholgical issue it's too easy to say that I am to blame. I've been asked if it's really worth a week or 2 in a hospital just to change cups. Again, I understand where these questions are coming from. I have to say that that is questionable. We can try to up the goals to try to make this more convincing later on but that is going to put a lot of pressure on Eric, and me. The therapists will help me with the follow through while they are here but for the most part the responiblity is on me alone. It is just too hard right now. I feel awful about what this autsim does to my sons. I don't need someone implying I am a bad parent because I just can't do this right now. Yes, I know he needs it. That is what breaks my heart. I get so scared that these kids could get really sick and not be able to tell me. These eating issues would really become a problem there. Another family support worker that I have visiting told me if these boys were ever hospitalized for an actual medical issue that they would be calling CPS when I told them what they ate and that Andy was still on a bottle. God I don't need to have those thoughts and fears put into my head! What I really think Eric needs is to go though the KKI program in Baltimore. If I have such a hard time with 2 weeks, 2 months seems impossible. I think they may let me have the other boys there though. I'm going to email my friend who's daugher went through this program and see what she says about it. I still have to look into getting a GI eval done on Eric. The feeding clinic folks think this is entirely a psychological/behavioral issue because of the autism. There are other folks working with us that tend to think otherwise and that physical causes should be ruled out. I agree, but now to find a doctor and a dentist that will work with Eric. That will not be an easy feat. It's getting very frustrating having so many people in our lives working with these kids right now. Everyone has an opinion, but they don't LIVE HERE with me and my kids. I respect their professional knowledge, but I know what is best for my kids and my family as a whole. I get really tired of fighting all this crap all the time.

The bottom line here is that I want to help Eric. I want to fix these feeding issues. This is very important to his health and future. I am willing to do what is needed but it can't hurt the rest of my family. Why does this have to be so hard???