calvin - cranio story continued finally - super long but finally finished

Evaluation with the autism clinicOne of the evaluations we had done was at the autism clinic in San Diego affiliated with the Children's hospital in town. The evaluation was 3 parts. 1st part was a meeting between the dr. and the parents. This gives the parents a chance to speak openly about problems, school and medical history and other concerns without the child hearing. Dave and I went to this together and it was somewhere in the 60-90 minute range. I can't say that this was enjoyable at all since it was basically an hour of talking about all the bad things about Calvin - not an edifying experience at all but a necessary part of the evaluation process. It was fairly clear from the onset of this process that Calvin wasn't going to be diagnosed with autism but there was still some benefit to completing the evaluation since more than anything we were looking for a place to find help. One suggestion she made at this first meeting was to see a developmental and behavioral pediatrician for guidance. They are trained to deal with sleep problems as well as behavior problems -- a good match for us. I started the process of getting an appointment with the behavioral specialist very soon after we left this meeting.

The second part was an evaluation of Calvin which took place 3 weeks later. The test started at 8am so Dave took CAlvin to start the test and the plan was for me to come relieve him after dropping of kids at school and babysitters, etc. The scheduled appointment time is 6 hours. I was concerned Calvin wouldn't be cooperative but the dr. assured me I shouldn't worry, so I didn't. After all, this lady deals with autstic kids for a living so she must be somewhat used to seeing kids who aren't 100% cooperative. For the first part of the eval she spent some time chit-chatting with Calvin to evaluate speech, eye contact, conversation flow, appropriateness of topics, reciprocity, etc. He was very cooperative for this as he usually enjoys talking with anyone. He is not shy and not nervous about talking to people. She did another test where Calvin was asked to copy some shapes on a piece of paper exactly as she did. He was willing to cooperate but tried to turn the paper to make it easier to copy the shapes. This was not allowed in the test so when the dr. tried to encourage him to do it without turning the paper he became very agitated and uncooperative. After a short food break Calvin tried again. He was not cooperative for long and eventually got the dr. so upset she decided to stop the testing. I was pretty surprised at this since I thought she would be used to difficult kids. All said, Calvin was done with the testing before I even got there...less than 3 hours.

The 3rd appointment was once again for parents and dr. only to discuss the results of the testing. As we had suspected, CAlvin did not fall on the autism spectrum but did share some characteristics with autistic kids such as sensory processing difficulties, inappropriate responses, pragmatic speech problems. She gave us some suggestions us seek help for these areas with OT at children's and at school, cognitive behavioral therapy and a few new goals for his ongoing speech therapy at school. This was a very small part of our discussion.

Since Calvin doesn't have autism the question remains, what does he have? Why is he having such extroidinary difficulties in all aspects of life? The dr. had printed an article about the possible link between craniosynostosis and behavior problems noting that in the children who had craniosynostosis there was a higher incidence of behavior problems in the years to follow. She said that we could not rule out craniosynostosis as the possible cause of the problems we were currently having. I was kind of surprised and disappointed as she discussed this for 2 reasons: 1. we already knew this. Dave had found every article in print about craniosynostosis and the links to behavior problems, sleep apnea, adhd and other disorders we had thought Calvin had at one time or another. and 2. how was this going to help me? it wasn't.

The rest of our discussion was about school placement. At this time (mid-november) we were at a major crisis in school. Calvin was suspended several times. He was constantly in trouble. I kept him home many days because he was in such a mood I knew that if he went to school he would be sent home and there was nothing good happneing when things escalated to that point. I had already started looking at the special education classrooms in the district trying to see where Calvin would fit best. This was THE ongoing topic of discussion between Dave and I and in her professional opinion we should push hard for the SED class which was being offered to us.

A complete written report was completed another 2 weeks after our final meeting. I was able to bring this to the school and was also nice to have so that all suggestions, and discussion was documented clearly for my records and benefit.

Diagnosis: 1. behavior problems due to medical condition 2. Oppositional defiant disorder (#1 basically means that there is a problem but do to unknown causes or in this case we can't rule out that it might be due to craniosynostosis)

**As luck would have it we were able to get in to see the behavioral pediatrician right around the same time we finished up our eval with the autism clinic. (Dr. appts consumed my life in November!)

Eval with the developmental and behavioral pediatrician
I was so grateful to be directed to the behavioral pediatrician. I had been feeling for a long time that the regular ped. and the psyciatrist we were seeing were truly in over their head and that we weren't really moving in the right direction. I was glad to know that there are drs. especially trained to deal with these difficult cases. I was also kind of pissed off at my regular dr. for not having told me about them 3 years ago when I came to him begging for help with the sleeping issues we were having back then and also that he didn't tell me about this anytime over the past couple of years when I have talked to him repeatedly about the problems we have been having. Anyway, enough of that rant.

Dr. Gahagan was great. She was a very soft spoken, sharp lady around 50 years old. She did very well with Calvin. She was not at all offended or put off by his defiance. She worked with him as much as she could and was very gentle with him. She examined him as a doctor does, listening to his heart and lungs, checking muscle tone throughout his body, felt his hands and feet, watched him walk, checked reflexes, etc. It was amazing to see Calvin so cooperative. (not perfect but quite receptive). Since dave and I were both at the appointment we were able to talk to her and let her see Calvin and then also had an opportunity to speak to her without Calvin present (I took him to the lobby to watch spongbob so dave could talk to her alone).

She also had a long discussion about the craniosynostsis and the possibility that these problems are all linked to his original birth defect. It is unknown what exactly causes the suture on the skull to fuse early. Some hypothesize that brain development is not as it should be from the beginning and is not growing at the rate it should that is why the skull fuses early. It is not really known, but what is known is that kids with craniosynostosis have a high incidence of eye and ear problems and also behavior and sleep problems. The simplest of answers is that everything is linked to this single disorder.

She strongly recommended the self contained classroom for Calvin and thought that the first thing we should tackle is the sleep disorder. AFterall, no matter what you do to help someone learn new coping skills, if you are super tired, grumpiness will be hard to overcome. So, she prescribed a medication to help him sleep at night and encouraged us to keep pursuing all the avenues of help we are trying.

Diagnosis: 1. sleep disorder 2. oppositional defiant disorder 3. sensory processing disorder

I asked her why she didn't add ADHD to the diagnosis and she said it was because he reacted so poorly to the medication (we tried 2). usually the medication is extremely effective.

Oppositional Defiant Disorder (ODD)
symptoms:
•Frequent temper tantrums
•Excessive arguing with adults
•Often questioning rules
•Active defiance and refusal to comply with adult requests and rules
•Deliberate attempts to annoy or upset people
•Blaming others for his or her mistakes or misbehavior
•Often being touchy or easily annoyed by others
•Frequent anger and resentment
•Mean and hateful talking when upset
•Spiteful attitude and revenge seeking

(Calvin has all of these - on a daily basis)

I have learned a lot about different syndromes and disorders over the last year. I have probably read at least 20 books - one thing I have learned is that the difference between a "normal" kid and a kid with a disorder, be it ODD or ADD or whatever, is that the normal kid will display behaviors sometimes but can still function at home, in school, with friends, etc. Where it gets to the point that it is labeled a disorder is when the behaviors interfere so much with life and in more than one setting that the child is disabled. Calvin's behavior is very present at home, at school, at play and everywhere he goes.

ODD is a cluster of symptoms and not a description of how or why a child behaves this way. One of the very most difficult things about Calvin's disorder is that parent roles have such a crucial part in the development and treatment of the disorder. It is so hard not to crucify myself with guilt over having been such a bad parent that I have raised a child who is failing in all areas of life. Sometimes it is so difficult I feel like I could just die of despair. Additionally, it is my parenting skills and ability to train him to get past his deficits that will allow him to move forward and hopefully become a productive and happy and active boy. This is a heavy burden to consider and one which I do not know if I am capable of. However, there isn't really any way to quit and give up so we just keep moving forward day by day hoping that somehow it will all turn out okay.

We did move Calvin to a special ed class in november. It took me a couple of weeks to figure out which class would be best (the IEP team recommended a certain class but I was not sure I trusted their choice at first but in the end I agreed that they were correct). After deciding that this SED class was right I spend another few sleepless nights grieving over the realization and acceptance that my child did belong in this class. I recognized the feeling as I have had it before - it is the feeling of grief over the loss of the ideal child. Many parents feel this and I know I am not alone. I felt it when Calvin was a baby and I knew that he wasn't "normal." Grief feels terrible. I also felt the same when my Mom died. All grief feels the same I guess. CS LEWIS describes it perfectly in A GRIEF OBSERVED. It is almost like a paralyzing fear which leaves you in a haze.

Anyway, once we put Calvin in the class I felt much better and have been able to keep moving forward day by day. Some days are still awful but on the plus side Calvin is getting more attention at school, more work done and he doesn't get suspended so I know that I have 6 hours to do what I need to do while he is at school and I won't get called to pick him up. his class has 6 kids (all boys) and 3 full time teachers plus a couple of aids who pop in a couple of days a week.