update

So much has happened and has not been recorded . Today I felt I wanted to be sure that I remember some of the details.

Last February Calvin was diagnosed with Autism at Rady's autism discovery institute. 
Several years ago (probably about 5 years ago) he was evaluated at the Rady's autism discovery institute and was not diagnosed with autism.  Several things have changed since that evaluation that prompted me to take him and have him re evaluated.  First, Calvin's speech has gotten worse so that now his stutter, slow speech and pragmatic speech problems are the first thing you notice about him. Second, in other areas besides speech, Calvin has continued to progress at a rate that is slower than typical peers so the difference between Calvin and other kids his age continues to widen as he gets older making his disabilities more noticeable. Third, the DSM (diagnostic handbook for mental heath disorders) was updated two years ago.  For the diagnosis of autism there used to be an exclusion that if there are other medical problems which could explain the symptoms of autism than the diagnosis of autism would be withheld.  The most recent version of the DSM took out the exclusionary statement so that if any child presented with autism like symptoms they would be considered to have autism no matter what other medical conditions were present.   I suspected that with these changes Calvin would be  diagnosed with autism.  This would open the door to many different treatment options for us which had not been available before.

The process to be evaluated for autism is about a 6 month wait and then a two month process.  Everything went very smoothly and I could not be happier with the process.  When we had our final visit with the Dr. and she told me Calvin would be diagnosed with moderate autism I was very relieved. She called him moderate because of the amount of care he needs.  I drove from the autism discovery institute straight to the San Diego regional center to re-apply.

This month Calvin was accepted as a client at SD Regional Center.
About 4 years ago we applied to the regional center under the diagnosis of epilepsy. We were in desperate need of help. Calvin's behavior was totally out of control and my world was starting to shrink because I couldn't go anywhere with him.  We were in crisis.  Our intake and evaluation process was very intimidating to me. I'm not sure if I was treated poorly or if I was just inexperienced. It was probably the former.  I felt that most of the people I interacted with, especially the dr's who evaluated us, were there to block us from getting help. I was also very uncomfortable at the time about talking about just how hard it was, the severe behaviors and the effect it was having.  I was embarrassed and afraid that it was a problem with my parenting more than anything else.    We were not admitted to the regional center upon applying. So we went through the appeal process. .We had a lot of support from family and friends and even a few of Dave's colleagues.   It was obvious to all that there was  a developmental disability at play but the judge did not feel Calvin could qualify under epilepsy since he was not having active seizures.  I was shocked that there was a small team of employees from the regional center whose job it was to block access to our admission. I can't imagine any degree of job satisfaction coming from seeing families who need help and then being sure they don't get help. However, I suppose that the probably feel some sense of accomplishment on not wasting govt money on people who don't need services. Anyway, I view that team of two as pretty evil humans to sit across the table from us and put a case against us as to why we should suffer alone instead of have a little help and compassion from an institution that was created to help families like us.    Anyway, I obviously have some bad feelings about a couple of staff members at regional center!

Fast forward to this year. When I got the autism diagnosis I went right over to regional center to re-apply. You can't re-apply unless there is a significant change. A new diagnosis of autism counts as a significant change. 

The application process this time around was really easy.  I'm sorry to say I had the application sitting on my table for months before I finished it, but once it was done we had a great experience. My intake person was fabulous.  They had an outside Dr. evaluate Calvin instead of one of the in house drs (which we had worked with  before).  The evaluation process was very pleasant and very informative.    He helped me to understand calvin a little better.  He did agree with the diagnosis of autism. 

He explained that Cavin would probably fall in the category of aspergers if that was still a thing. Calvin has a desire for social interactions but not the ability to maintain them.  Some autistic kids do and some don't. He also explained that Calvin is what they would call "borderline"

In May Calvin moved out of the house.
Life for the girls has  been really hard.  The have lived with the threat of abuse on a day to day basis. I have always known that at some point Calvin would be big enough that it would get dangerous for him to be in the same home as the girls.  This year it became apparent that that had happened.  I was starting to research different options, group home, residential treatment, knowing that a big decision was coming. I also started to do some of the emotional work associated with this kind of big change. I am so blessed to have a great network of friends and through them I've run across a couple of people who have been through the experience of having a child leave home because of behavior problems. It was very helpful to talk to them and learn more about their experience, why they did what they did, and how they sorted through the emotions of guilt and pain that come from making such a hard decision. 

The first week of May I took just the girls to Utah for a week for my brothers wedding. Dave had to work so we decided to have him stay home with Calvin.  It was an AMAZING trip for lots of reasons: so great to be with family, so many fun activities, such a beautiful wedding/bride/brides family, etc. All the details were wonderful. What made the trip enjoyable and possible was that we didn't have Calvin. The girls said stuff like, "it is so nice not to worry about calvin hitting us" or "it's nice that we can listen to a book in the car because Calvin won't yell at us" or "it's nice Calvin won't break our things". As I listened to these statements I realized our "normal" was not at all normal and it was not safe either.  It wasn't a situation where one less kid is a little easier, it was a situation where one less kid meant we had some freedom and safety.  Freedom and safety should not be rare in childhood, they should be guaranteed. 

I was super grateful to Dave for keeping Calvin so that we could have this once in a lifetime trip!  Upon returning home it was interesting to find that Calvin had enjoyed a very good week too. With one on one attention and less stress than usual since the sisters were not around, he had been very well behaved and had much less behavior problems than under normal circumstances.

In spite of these two positive reports we brought the family back together and within a couple of days realized it would not work and that the girls and Calvin needed to be separated. At church when I was a kid we were taught an analogy of a frog when put in a pot of cold water and then the water heats up gradually the frog will get to a boil and not realize what has happened until it is too late. The warning is to stay out of sin before you become so entangled you are not making good judgement. In our case, we had become so used to chaos, pain and abuse that it was like I was the frog in boiling water...it had heated up so slowly over so many years that we were kind of used to it.  once we got out of that pot there was no jumping back into the boiling water!

Within a day or two of everyone being home together we were all crying and knew something had to be done. Dave found a 6 week, short term, furnished rental starting a couple of days later so we decided to give it a try and  see how everyone would do in separate living quarters for 6 weeks.

It was very traumatic for me to have the family separate. I cried a bit for the first few days and felt really sad.  Dave kept asking how the girls were and if we were all happy but it was still so shocking that i didn't have the answer he was looking for. I also found it hard to tell other people what had happened. I told a couple of friends and one of them brought over some flowers, I thought that was really sweet. After we got used to it, after a couple of weeks, I noticed that we (the girls and I) were coming to a place of more fully functioning and it was very comfortable to feel safe at home some of the time.

After the six weeks was over we decided the change of calvin to his own living space was good so dave got another apartment.

important insert here: I actually had wanted to look into residential treatment or a group home for Calvin so Dave could come home but Dave didn't feel good about doing that. We met with educational advocate Allan Roth, who I highly recommend. He gave us our options and helped us understand the system a little better. After meting with Allen we both agreed group home would not be good but I still felt like we should look into residential treatment but  dave wanted to keep calvin in our care.

Meanwhile Dave's parents had a change in job situation so they were able to think about coming to SD to help us out.  It was tried for a couple of weeks over the summer, discussed and agreed upon.  The were able to move here after Thanksgiving. So currently Dave, Calvin and his parents live in a house. It is such a blessing to have Dave's parents here to help out. It seems strange to say that the two of us can't do it alone, but it is the case.

We start ABA therapy at home. 

A few months ago we FINALLY got tot he top of the wait list for intensive in home ABA therapy. This is on of the services that we tried to get before but insurance will only pay if you have autism. And it is too expensive to do  out of pocket.  Anyway, we had figured it was the last resort to try to keep Calvin at home with all of us, to give us more training on how to have a good environment for him. It also trains him how to better cope with stresses instead of acting out.  It started in August this year.

ABA is great. calvin has been successful in an ABA based school. The tricky part at home is setting up an environment where the program can be consistent. It's hard to do with a one parent and four kid household with all the moving parts. 4 to 1 is a higher student to kid ratio than at school for Calvin!  Anyway, i learned a lot with the program but the place where we fail is that I can't follow through on the consequences (such as take away electronics) without Dave home because I'm so scared of Calvin hurting the girls or breaking things etc. So I ended up being wishy washy sometimes.  If I asked Calvin to turn off an electronic and he said no, I was in a pickle. Do I start a fight that might escalate to calling the police, things getting broken or getting hurt? Or do I let him be disrespectful and break the rules without consequence (thereby ensuring certain failure of the program). In the end we found that I could not safely get control of Calvin. He was in charge. I felt like I was held hostage.  So while ABA is a good program I consider our use of ABA a failure to improve the behavior enough that Calvin is safe at home.

Our behavior therapist is named Virge. we love her. She is like part of the family. She has been coming over 13 hours/week and she is a delight. I am thankful for her. She is very patient with Calvin and appears to thoroughly enjoy her work and she does a good job. She is kind to all of us.  It is very up close and personal to have someone in the home that many hours and she has been patient with us and so helpful in instructing Calvin and me.   We took her to the spook alley with us for Halloween and that was the funnest thing I've experienced with her. She was very dramatic and super scared!

Calvin graduates from Cook Education Center.
I never thought Calvin would be ready to leave Cook school but it has happened.   Calvin reached a point where Cook was giving Calvin everything they had to offer and he was ready for more. more academics and more opportunities.

This year we got a new case manager. She is great.  She did the triennal evaluation and started the process of trying to get calvin moved. this had happened last year too but things didn't align right. I think a lot has to do with this case manager who took me to classes which seemed like a good fit.  The process went really well.  We had our big IEP meeting a few weeks ago and had things lined up for Calvin to move schools. The testing done was very thorough. There could probably be a full post on those but one thing I did want to mention is that as she reviewed calvins full educational file she said she was shocked to see how misdiagnosed, misunderstood and misplaced Calvin was in his early years.  I feel a mix of sad, mad and validated when I hear that. Sad that Calvin and I didn't get the help we needed years ago, mad for the same reason, and validated in the intensity of our struggles all those years when it is plain to see we needed more help and different help than we were getting.

calvin started in an autism  class at public high school. he attends that class for two periods a day and for three periods goes to general ed class for math, mixed media and biology.  he is loving it so far. I am so happy for him and so proud of him.