Wednesday, April 29, 2009

So Much Work Still To Do...

In my other life, I work for a family organization in Oregon that helps families across the state with children who have various special needs. We work tirelessly to help families learn how to develop and use their voice to advocate for their children. In my recent experience with my daughter, I learned that there is still so very much work to be done to help families from being overpowered by professionals and to assure our children get the care they need.

After transferring Jovanna to a sub-acute unit to continue the work of titrating her off the medication causing the dystonia, I noticed that staff on the unit and nursing staff were referring to Jovanna's dystonic episodes as "behavioral". I was seeing red! So, what do you do when a child does a "behavior" that you don't like? You either scold them for it or ignore it, right? So, my daughter is in a full body dystonic episode with eyes rolling back in her head, arms and legs thrashing around, muscles contracting so tight it is painful, and...not taking breaths!!!!! And they are referring to this as a behavior that she has control over!

I can't tell you the thoughts of awful things that were running through my head. I can't tell you the most immense anger I was experiencing! Her father and I were afraid we might not see her alive again. Thank god I do work where I do and I have developed as a strong advocate for my daughter and when it comes to my children, I have the tenacity and strength and stamina of a pit bull! I kicked into gear and wouldn't stop until my voice was heard. Finally, I was able to meet with the doctor following her at the center and we had a discussion about what was happening. Because of some of the movements Jovanna was making in the days leading up to the acute dystonic reaction, and because Jovanna admitted to me that there had been a few times on the unit that she was playing with staff and faked the eye movement that she makes when she goes into an episode, it all made sense then. The doctor realized that the times that Jovanna had faked the eye movements caused staff to believe that everytime Jovanna was having a dystonic reaction that it was not real. So, herein lies the danger of professionals and other forming "oppinions or assumptions" with our children...because their oppinion was that it was "behavioral", Jovanna was not receiving the medical attention she needed when she was in a dystonic reaction episode. She should have been getting a dose of cogentin when it happened.

I can only be thankful that I was able to advocate for my daughter effectively. I am sad that this went on for several days before my voice was heard and that my daughter suffered during this time.

She is being diagnosed with tardive dyskenisia. This is very serious and sometimes the movements associated with it don't go away and stay throughout the lifetime. They may get better over time, over years. They are certainly more prevalent under stress with her, like during transitions, etc. She is doing quite well on very little medication and that is a real positive thing to have come out of this. She won't be on a whole lot of medications now and that gives me some peace and joy that she really is maturing and growing.

This whole experience has been one that confirms for me that the work I do with other families is so very necessary, so very important and that we still have so much work to do to help families develop and find their voice and trust their gut instincts about their children, helping families become strong advocates for their children.

Friday, April 24, 2009

Been Crazy!

We had the private inspection today. There are a lot of little things that need to be done over time but luckily, no big issues with the home. Soooooo...we are moving forward! The VA Inspection has been ordered and if all goes as planned, we will be moved in to our new home within about 45 days. There are definitely lots of little projects that will keep me busy for a few years but I am excited about being a home owner again.

In other news, Jovanna has had a rough few days. She had a dystonic reaction to one of her medications and she had to go into the hospital on Monday. She was transferred to Doernbeckers Childrens Hospital later that evening. She is having odd eye movement and the muscles in different areas of her body are contracting and tensing up. I guess it is pretty serious because the concern is that it can go to the larynx and that can cause problems with breathing. This is such a scary thing to me. I have all kinds of guilt that I feel because of the medications she is on and feeling responsible. Over the last few months, Jovanna has been more challenging and I believe it is related to puberty. Last week, we decided to increase two of her medications slightly and that is what did it. Now, I'm feeling really awful.

Because of what we know about Jovanna and her history of being aggressive and violent, her care team decided that it would be best if we transferred her to a sub-acute unit at Albertina Kerr. This was so we could safely tritrate her down off the medications that are linked to the dystonic reaction and there was concern that she would fall apart and we wouldn't be able to manage that at home. This was a tough decision because she hadn't done anything wrong to that point and I was concerned that she wouldn't understand why it was happening.

She was transferred to the sub-acute unit on Wednesday and other than some challenging behavior during the transition, which is understandable because she doesn't transition well, she has been doing great! No problems! And the greatest thing about this is the prescribing psychiatrist who is working on her medications decided to immediately remove her from two of the three medications in question and she is doing great. She hasn't fallen apart, she is dealing with the inherent challenges of the situation, managing expectations... I am finding myself just in shock! I expected her to fall apart and so did everyone else.

This got me thinking. When we landed on her current medication regimen, she was amidst the most difficult years for children on the Autism Spectrum. Many parents with children like Jovanna will tell you that they never, ever, ever would want to go back to the 7, 8, 9, 10 year old years with the Aspergers/Autism Spectrum child. They are hell on earth. But Jovanna is 11 now and that is typically when these kids start to function better in this world. Could it be that this is what is happening for Jovanna? I hate to get my hopes up because this could be the infamous "honeymoon" period that many children like Jovanna have when they transition to a new environment. But...just maybe...she might not need all those medications we had her on now. And maybe the problems we did have over the last several months were because with puberty changes, she was actually being over-medicated.

Well, I am trying to not get too hopeful because I have done this before and then was let down. First things first, we have to get the dystonic reaction to go away. But I am excited to see what Jovanna looks like off all those medications and if she is able to continue to be o.k. like that. Just maybe...we are entering into a new and exciting phase in her development.

Friday, April 17, 2009

Here we go....

It appears that the latest offer I made on a different house last weekend isn't close enough to what the bank wants on the home. So, we are moving forward with house #1 (picture below). I will have an inspection done in the next week and then we will know for sure whether its a go or not. As long as there are no major issues with the house and we would expect VA to approve the home for a loan, then I will be moving into my new home in about 45 days!

Here it is...

I am already thinking about all the things I want to do to it. It needs a paint job really bad! I am thinking about painting the body of the house grey, the gutters white with other small white accents and the shutters black. I love that combination of black, grey and white. And one of the other things I want to do is to take out the front yard and create a circular driveway so it will be easier getting in and out of the driveway. Better for Jovanna's bus situation too. It usually takes her about 1-2 minutes to get out to the bus in the mornings after they arrive. They are very nice and wait for her. However, I think we would have problems with this situation on this street because there would be a row of cars behind the bus on this street and I doubt they will much tolerate waiting for Jovanna to get out to the bus. If we create a circular drive then the bus can pull right in to that and everyone will be happy.

Wednesday, April 15, 2009

Some movement...

We finally heard back on one of the homes! I heard back from House #1 that I have a photo of below in my earlier post. So, it appears we have an agreement. We are trying to get an answer on the one I put an offer in on Monday to see if they are going to consider my offer. If we can get an idea on whether they would/are considering it, then we may be able to hold off a bit on the House #1. It is exciting to have some movement on this finally!

Next, it would be having an inspection. You never know, it could reveal that there are problems. We will see. Since I am getting a VA loan, the home needs to be in pretty good condition or VA won't approve the home. That would be such a bummer! Then it is back to the drawing board!

Monday, April 13, 2009

House Searching Update

Well, I decided to withdraw my offer on the house #2 - the smaller one that is outside our current school district. I feel so much more at peace since I did that. I knew the house would be too small for us. This home searching is quite an experience. I am learning so much as I go. I am learning about what it is I really want in a house. Not that I can be picky - my price range is quite low so my options are few. I am so excited though because I qualify for Obama's first-time home buyer tax break. As long as I take possession of my home before December 1, I will receive an $8000 tax incentive!

I found another home today that I fell in love with! I put an offer on the home and now we wait a few days to see what the response is. If it looks like the bank might entertain my offer, I will take a picture and post it. I love this place sooooo much that I am trying not to get my hopes up too high so I don't get let down too much if it doesn't work out. I am keeping my fingers crossed though!

Wednesday, April 8, 2009

Which One?

House #1 is on a busier street but it is 25mph and monitored very closely by police to make sure people are going the speedlimit, 1/4 acre, 4 bedroom, mud room, separate room for a pantry and freezer, large kitchen, two fireplaces, 1 1/2 bath, large living room, deck off the back, large garage, about 1400-1500 sq feet, same school district (very important!) and comes with a swing (Jovanna likes that!).

This home has a lot of character and I really like that. I can envision my family living inside and it just feels right. It was built in 1968 and there hasn't been much updating done. So, as you walk up to the front door there is a vertical window running alongside the front door is orange glass!!! Yeah!!! That's what I remember from my childhood - orange glass! But I think it would be fun projects that would keep me busy.

House #2 is in a nice neighborhood on the corner of the entrance to a culdesac, average size lot but the house is set back on the property, it is small (1000 sq feet) with 3 bedrooms, 1 bath, goodsize garage, small kitchen, smaller living room, 1 fireplace, bedrooms are descent-size, smells very bad like dogs (I suspect the carpet will need to be replaced soon!) but the downer is that it is in a different school district and I suspect we would have a fight on our hands to get Jovanna's educational needs met.

We would be tight in this place and I really feel strongly that we would need to build on an additional bathroom and a scraproom/office (of course!) in order for me to be happy in this place. It does look like there is plenty of room in the front of the property to do that.

We are still waiting to get anything in writing on either one of these. It seems that we are very close on a deal on House #1 and there is a verbal confirmation on House #2. The way the market is, I suppose things could change and neither one of these would be an option. Hope I have some more firm direction soon!

It appears that we have a little more time...

Good news!!! The home in Beaverton (second choice) is a short sale and there are two banks involved in that transaction. They are planning to accept my offer but the banks need more time to squabble over who is going to get how much of the money. This is great news! This allows me a little more time to work through the inspection of the home in Hillsboro (first choice) so that hopefully I don't have to give up either one to move forward. I can relax a little now and try to move forward with my first choice home and see if it makes it through the inspection. I think I will take pictures of each and post them here so you can see what I am looking at! Watch for these later!

Monday, April 6, 2009

To make the decisions even harder!!!!!

I got a call from my realtor this evening and it turns out she got a call late this afternoon from the realtor from the first home that told us that they were not accepting my offer. It appears the bank changed their mind in the same day and now they say they want to accept my offer but they need the loan to close in 45 days, not 60 days. They want to have penalties if it doesn't close in 45 days. I am doing a VA Loan and they usually need between 45 - 60 days to close. Ohhhh, the decisions just get more complicated.

In an attempt to make the decision-making easier, I did a sex offender search around the two homes but it appears there are no sex offenders living within a mile radius of either of the homes. Darn! That would have made the decision a little easier!

Decisions, Decisions, Decisions...

I heard back on my home offers today. The home that I wanted, and of course there are always pluses and minuses to homes, I didn't get. The bank accepted the other offer. Bummer!!!!! However, the other home I had an offer on, which I made the offer more than a month ago, did call back and say that they were accepting my offer. Now, I have some decisions to make. Again, there are ALWAYS pluses and minuses, right? The biggest drawbacks are that the home is smaller and in order to make it more livable for me and my family and my life, I would need to build on another bathroom and an office/scraproom. The other drawback is that it means changing school districts. For many families, that is not a major thing but for us, it is.

The school district we would be moving into does not contract with the therapeutic school that Jovanna attends. I am expecting that it will be a battle to either keep her at her current placement or to find a different appropriate placement. That could mean that Jovanna is not attending a school placement for a number of months or that the placements that the school district are willing to look at may not be appropriate for her. She is so fragile that the implications of these things could be devastating.

Well, I have a day to make my decision. Do I want to take on the battle? It's not like I could just keep looking. The number of homes in my price range are not very many and the good ones get swooped up real quick by investors paying in cash. I actually believe the market is beginning to turn around and very soon houses will be out of my reach again. Oh goodness! I hate these kind of decisions!

Friday, April 3, 2009

Excited...DT for My Sketch World!

I have been so busy I haven't had a chance to post this yet. I was lucky to be asked to be on the layout DT for My Sketch World. I did my first layout for the April 1st reveal and you can see it here. I am excited to have a new way to express myself creatively and I really enjoy the monthly sketches that Lucy does at MSW. Make sure to check it out!

Also, new news! I have two offers on two different houses. One is a short sale and those take a long time to hear back on, it has been more than a month and we are still waiting for a formal response. The other is a foreclosure and we just heard back yesterday with a counter offer that was not too much significantly different than the original offer, only just a few minor differences. However, the bank does have multiple offers on the house. What is promising is that the bank didn't change my price offer in their counter, only just a few minor details. For example, closing in 45 days rather than 60 days. We submitted our counter offer and now we wait to hear. I am anxious! My stomach turns in a flurry when I think about it.