Saturday, August 23, 2008

Temple Day

Today we had our annual Ward Family Temple Day and primary was in charge of helping out the boy’s and girl’s achievement kids entertain the little ones for the first hour. I would have gone to a session but we were short handed and I was needed to help supervise. I have to confess that I have been dreading this day for the past month. Jeremy has been in Australia and knowing that he was not going to be there to help I have had a bit of a “hidden negative/ panic” attitude about it. I have tried to only let my kids think that there was no other place I would rather be then at the temple grounds trying to maintain some kind of reverence while keeping them entertained, fed and happy for 5 1/2 hrs. We got up at 5:00 to make it there in time and we picked up another sister and her daughter from our ward. I was prepared for the kids to be grumpy and tired, and it never happened. I was waiting for a huge Lorenzo meltdown and it never came. I felt I could take on the few “kids with attitudes” in our ward and somehow the attitude’s disappeared. Once again I am truly humbled at how the Lord blesses us. The time went by quickly and the kids had a great time. I got to better know another sister in the ward that I would not have known otherwise and it was a wonderful day. My only goof, my kids were the only one not in Sunday best, my lame excuse... I was tired and decided to pick my battles, but next year I’ll be better.

Thursday, August 7, 2008

An Answer

Well first off let me start by thanking everyone for all of their kind words and support! You are all the best and we really feel blessed to have such wonderful friends and family. It has been a crazy week and for those of you whom I talked with at the beginning of it I am doing better and actually feel good about things right now. For those of you whom I have not talked with let me bring you up to speed.

Lorenzo’s Developmental pediatrician called Monday to schedule an appointment to discuss some lab results that had come back. We were able to meet with him and the geneticists and it turns out that Lorenzo has a deletion or loss of copy number in the short arm of chromosome 16. In simpler terms he is missing a small section of his number 16 chromosome. This is found in people with mental retardation as well as autism. So after over 2 years of guess work and different assumptions and guilt as to why Lorenzo is, for lack of a better word “different.” We now have some conclusive evidence as to what is causing all the mayhem. I was a bit freaked out after meeting with the doctors on Tuesday. They had told us they would not give us any info over the phone that they really needed to see both Jeremy and I in person so I was sick all Monday night. Then when we get in there it was not much better as they were really there to pass on some info and to console us. I felt like all we kept hearing was how sorry they were instead of what we need to do now. We already knew he had a problem we just need direction an how best to help him. So while it was nice that they wanted to offer their sympathies I really needed to hear were to go next.

We met with his psychiatrist later that day and passed on the lab results and he said this does make things a bit different but he was much more positive and we both walked out of there feeling better. He has a game plan and gave us some direction as to what we do next. I am so thankful to this doctor. Things have really started to happen with him and he is really concerned about Lorenzo on the whole and not just the psychiatric side of things. He has really helped us and is a great advocate for Lorenzo.

Jeremy and I had been fasting this last weekend and although I failed to see it at the time of these findings I can now see that this was a direct answer to our prayers. We now have what we need to really put pressure on the school, and we hope that things will get better on that front now.

I feel so blessed for so much right now. The testing that they were able to do is called microarray analysis and it is really new and super expensive and most insurance companies will not pay for it. I am so thankful for the navy and the 2 excellent doctors that we have been working with that have not given up trying to find out what is going on with Lorenzo. Most of all I am grateful to a Heavenly Father that always answers our prayers.

Sunday, August 3, 2008

What to do

I should have waited until after the first week to post about school. I thought things had gone pretty well but it ended up being a not so good start. Lorenzo had an OK first day but the week went down hill fast after that. The teacher is not so nice or understanding and I seem to be on her bad side already. The school is refusing any services right now as they want to wait on the test results (test they refused to do so we had to go to another district for). I went in Friday to request another IEP meeting while we wait for the testing to be complete and they told me there is no need, that he is doing well. Apparently crying everyday, having to be removed from class and having major anxiety attacks at home and school is what they call well.

After being down in the school office or on the phone with someone from there everyday this week I started to get pretty discouraged by Friday. I had been calling around to some of the private schools on the Island and found one that is specifically for higher functioning kids on the autistic spectrum and we met with the director Friday morning. He was great and offered us a lot of advice. We loved the school and wish we could get Lorenzo in right now. The only problem is they do not have any openings this school year and even if they did tuition is over 25,000 a year. He told us that we needed to look into taking action against the school district and that if we won by law they would have to pay for our legal fees and his tuition. Now here is the problem, if we decide to fight the school on this and loose we are out all the money it costs to take legal action, it can be expensive and that could be money put towards helping Lorenzo. Next if we win we cannot get him in until next year and we are supposed to be leaving here next year. We have though about trying to extend here but as this is over seas we are not even supposed to be here with Lorenzo’s EFM status. I have thought about pulling him out and homeschooling him but he really needs the interaction with the other kids and he needs occupational therapy, something I cannot provide at home. Plus I think our Doctors would be very upset if we pulled him out and I need their help if we are going to fight to get the school to do more.

I wish I had a crystal ball and could know what the outcome would be and where we will be next year, but as for now we are a little lost. We have been totally relying on our Father in Heaven to somehow help us through this.