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.

14th birthday

Today Jo woke up smiling.  "today is Calvin's birthday. Do you think now that he is 14 he will be nice?"


We've had a rough few weeks.
What does "rough" mean?
hitting the girls, swearing at everyone and everything, threatening, breaking things, refusing to get on the bus, dumping pills down the drain, charging things on my credit card, charging things on my bank card, using my phone to change passwords, swearing, swearing, swearing.

funny not funny

when your four year old learns to spell Calvin's favorite word ....penis.... I am sorry I taught her to read

lost friends

a while back, probably september, the beginning of the school year, I had met a mom of a girl in Clare's class who was brand new to the school. She also had a second grade daughter so our girls were the same age. I invited them over to swim after school one day.  Calvin was home, or came home while they were here. He was in a very bad mood.  Yelling, threatening, chasing his sisters. The mom was very uncomfortable with the situation and worried for her kids' saftey (understandably so) and left with her girls. We have not spoken since. I had somewhat forgotten about the incidence until I saw this family at pickup and realized that this was definitely a "calvin casualty".  I think that's a thing. This week is spring break week and there are many other causalities this week such as free time, a regular shower, and my sanity.

school decisions

Looks like we will be staying at Cook.

At the Cook Education Center there are several programs. There is the primary program with kids K-7th grade (ish), which is where Calvin is now.  There is a secondary program with kids 7-12th grade.  Urban Skills Center (USC) has kids ages 18-22. Also at the school is Children's Workshop with a different population of kids age 15-22. Each of these programs runs independent from each other, with limited interaction between the groups, but they do share a campus so they see each other, plus they may ride the bus together, if they are coming from the same district.

Calvin will move to the secondary program which will allow him to have more challenging academic classes but still have a lot of support, which he obviously needs.   The secondary program has kids 13-18 (once they reach graduation age they move next door to USC - Urban Skills Center, either for life skills, employment training, or to finish diploma work). There are 60 kids in the secondary program which will give Calvin lots of people to interact with and a big group to find some friends. Some of the kids in the secondary program Calvin already knows so he feels comfortable with the transition.  Calvin is happy to stay at Cook where he knows a lot of people, and also so he can continue with Karate. Right now he has a blue belt and is doing well in class.  He really likes Sensei Frank and what he is accomplishing in Karate class.

I am now know quite a bit about the non public schools in San Diego which is important for me to make the best decision. And would be super useful to anyone else looking for a non public school in town, if I ever run across anyone who needs that information. Slim chance, but you  never know!

In the next couple of years we may look at moving Calvin back to public school into one of the classes in the district. I don't know a lot about those classes yet. I tried to see the one that would be most appropriate but the district would not let me, saying they need to protect student privacy and not have parents come and look at the class unless we are considering a placement change right now.  While I understand the need to protect privacy I also think it's ridiculous to not allow me to look at the classroom because otherwise we will never know if Calvin could move back to public school.  That being said, the district is paying his tuition and if they want to continue to do so I suppose I should just be grateful that they are happy to do so, but it seems dumb to me that they'd want to block progress.

perspective

It's not very often I run across someone with a similar life to mine.  Yesterday I met someone, she is was the house guest of our neighbor, and she has a son that is kind of like Calvin. Actually a super lot like Calvin.  It was amazing to connect with this woman who has had almost double the life experience I have (her son is almost 2x older than Calvin). She is an amazing mother who has worked hard, suffered a lot, and put her heart and soul into her family. She has faith and courage  and love.  One thing she said is that even though it has been hard, it is amazing to look back over how far they have come from 5 or 10 or even 17 years ago.  I hope  5 or 10 or 17 years from now I can look back and see that we have made progress, that we are in a good place and that I'm happy with how far we've come and have some hope for the future.

I feel like we are in a hard spot in our journey. It's been long enough that I am tired. The newness has worn off, the hope that something new is going to come along, in terms of diagnosis and treatment, is gone. Now we are left with a long stretch of life in front of us and I'm not sure where it's going.  We are not reaching the same milestones as other kids that are about to turn 13 in school, social, or any other setting.   I am in a rut with my mothering and my patience.   Talking to this other mother who has walked a similar path for even longer made me realize that there are small and large  victories that need to be appreciated.  The grief of always being off the path of "normal" kids and missing major developmental milestones is real and it is hard and it will probably never go away. but instead of embracing that pain, I can celebrate the small victories and changes we see which move us in a positive direction.

I recently read the book Edurance by Alfred Lansing about Shakeltons journey to Antarctica. I highly recommend the book! There was one part of the book that really resonated with me in relation to my journey in parenting Calvin.  One of the most amazing aspects of the expedition was that the crew stayed so positive and morale was generally very good, even though they were in very real danger for most of the trip. I think part of this was attributed to the fact that they did have confidence in themselves, did believe that they would eventually be rescued, but they kept that hope at bay by keeping that hope in the future and not settling on a date they thought they'd be rescued or a specific distance they would cover in a day. They just always had hope that they would eventually be rescued.  There were a couple of points in the book where the men got very excited about the prospect of hitting land, but then the opportunity  passed them by. The depression that set in following these setbacks was almost crippling. They learned from this experience to stay hopeful and have faith that things would work out but not to set terms and dates for specific achievements.  Near the end of the book part of the team had gone ahead to get help and most of the men had stayed behind waiting to be rescued. It was torture to just sit an wait knowing that if the rescue party did not make it back they would definitely die.  They had calculated how long the rescue should take and started planning for the rescue to come within a few weeks, waiting with great anticipation. As the date they had planned on for the rescue came  they realized they would be completely crushed if the rescue did not come in time, they instead set a date to hope for the rescue to come several months into the future.

I have noticed this same thing happen in my journey with Calvin.  Whenever I set up comparisons, milestones I hope will happen, or progress I hope to see, I am extremely disappointed as that dreamed of progress passes us by. I try not to think about birthdays that come and go, what grade he's in, what he could have been doing by this point, what life we are missing out on.  We just live day by day and hope that each day is a good one where we learn a little more and float in a good direction.

Looking back from 2-4 years ago when we were really in a tough time, there are some great improvements.  Calvin sleeps really well. He can stay home along sometimes.   His behavior at school is good. He has a great school where he is happy and has friends. He likes his karate class at school and works hard in that and is proud of his progress. He can do legos for 8 hours straight.  (If I could afford it, I'd have legos for him to do every day).  We have good drs.  We have good insurance so we are not in financial ruin.  (many families with kids like calvin have very serious financial problems. so far, we have been very lucky in that regard).  Our insurance pays for our medications.  (If not, we'd be paying probably 2-3K/month for them). Calvin hasn't had a seizure in years.   We have lots of good things going for us.

Circling back to my new friend. She had a few suggestions of things she did well or wished she had done better for her family along their journey when kids were younger.  Make therapy more available to the siblings.  Talk openly with the other kids about the struggles you face.  Surround myself with great women.

trying new schools

Tues/Wed Calvin attended Sierra school. The visit went very well. He enjoyed the school, made new friends and did great. They enjoyed having him there. The staff is very nice, his teacher would be a young guy (late 20's) which is a great fit for Calvin.  When I picked Calvin up after the first day of his trial he said, "I liked it but I didn't get enough breaks" and "I just want to stay at Cook (his current school)"

Since then Sierra has called and said his visit went very well. They feel they can challenge him academically, they were impressed with some of his abilities, especially in science where he can do work at above grade level. They also feel they can meet his needs socially and emotionally. He seemed to get along well with the other kids and made new friends quickly. He was motivated by the point system they have there even though he has yet to see all the things he could do with those points.

Th/Fri was scheduled to be at Excelsior. Thurs morning we had a rough start getting out of the house in the morning and we arrived to school with Calvin in no mood to go in. Dave was going to work about the same time we were going to school and he threatened that he'd come over and get Calvin if he didn't cooperate. I think that's why he ended up going into school after about 30 minutes in the car whining about various things.  About 30 minutes after Calvin arrived at school I got a call from the school saying Calvin had had a couple of incidents they weren't sure what to do with. First, the teacher tried to introduce him to another student and he said, "shut up". A few minutes later he was given a book for some work and Calvin threw the book on the floor. They didn't know what to do with him since they had only known him for a few minutes. So, I decided to go back to school and get him.  It did not need to be spoken that he is not a good fit there. He didn't like it, they didn't like having him.

When Calvin got back in the car I said, did you do those things because you knew they would call me and you would  get to come home?  he said, "hard to explain but kind of". I told him that next time he can just ask to call me. He said, "do you think they would have let me call?" I really don't know that they would have, but he should at least consider a more reasonable option than behaving bad enough that they will kick him out and call me.

So now we have the option to keep him at Cook school, where he could move to a secondary program on the same campus, but with older kids, or we can move him to Sierra. I am waiting on a school visit to Cook's secondary program (even thought Calvin has been there 5 years I have never seen the secondary program in action aside from a glimpse of PE or karate when I come and go).  I am also hoping Dave can get over to Sierra and take a look before we make our decision. I have made two appointments for him so far but both times he's had to cancel last minute.