We just finished the IEP in two 2 hour meetings. Geez. We have goals in place and up to date testing completed. Calvin still qualifies under Other Health Impaired but we added ED as a second category. One of the funny things reported in the IEP was Calvin saying he "never has baths or showers"! Ha! He wishes. It is a fight to get him cleaned up once or twice a week and it is a not so secret dream of his to never have to shower. Come summer that dream kind of comes true since we count swimming as close enough. Sometimes I even take shampoo down to the pool for him. :)
Anyway, school is going well, generally speaking, for Calvin. We are lucky to have him at a school where he appears to be achieving stability and enjoying some measure of success.
June 6th we have our appt with the neurologist to discuss results of the video EEG. However, on the last day of the video EEG last week, the dr. who discharged Calvin from the hospital said she reviewed the entire test did not see any epileptic discharges during his stay, meaning that his seizures are well controlled with his current medication - and that his behavioral fits are probably not results of sub-clinical epileptic activity. There were a few other things discussed but I will wait until we have our real appt to see what shows up on the official results before writing them here.
Knowing that. we are going ahead with the next step which is an appt with Dr. Max, a neuro-psychiatrist in town. The only bummer about him is he is a pay out of pocket guy and not contracted with any insurance. The first visit is 3 hours at $340/hour. Makes me thankful for our great insurance that covers almost everything else we do. We have had great insurance our entire married life!
We also have our appeal meeting with the regional center to try and get Calvin accepted there. I spoke with a representative at area board 13 and they gave me a few tips going into the meeting. If we don't qualify under epilepsy she recommended we ask to be considered under the "fifth category" (not published anywhere) which is for children who "present like a disabled" individual even if they lack a compelling diagnosis. In my onion whether it is through epilepsy or this other category I think we should be accepted.
We also recently started working with a new behavior agency. Our case manager is a man, Matt.. I really like him. I also like that he is a man. Calvin responds well to men. He has put a plan in place and we will work 2x a week to start. Once we are in full motion we will hopefully be able to cut back a bit.
Life is busy.
Another thing that has been on our mind a lot lately is how to achieve balance with Calvin's special needs and those of our other children. We have been told more than once that the heaviest burden of a special needs child falls with the siblings, not the parents. Given how overwhelmed I feel I honestly cannot imagine that it is worse for the girls. It pains me to think of it. The new behavior therapist, Matt will be doing is setting up a behavior plan for all 3 of the kids (who are old enough to participate). The girls often feel left out and say "no fair" at all the attention Calvin gets when he goes to OT and receives rewards for simple tasks that they do daily, which are a struggle for him. I have explained to the girls that Calvin's brain is different and he has different goals than they do and I hope that they are strong enough and resilient enough to accept this without being bitter and resentful throughout their life.
Wednesday, May 29, 2013
Wednesday, May 22, 2013
hospital stay
This is the view from the door
Monday night I brought the girls to visit Calvin. He had had such a relaxing day we wanted him to have a little excitement and irritation in his life so as to mirror a more real life picture of what would happen to him day by day. We wanted him to experience a range of emotion and experience to see what/if anything triggers epileptic activity. The girls were so excited "mom, I've never visited anyone in the hospital! This is so fun! What room is Calvins? ...." They are so full of energy!
Dave also asked me to bring Calvin some homework to try to irritate him a bit. But it didn't work. He was happy to have a workbook and did a couple of pages happily! :) This is not our usual Calvin. However, an hour of the girls non-stop talking did get him a bit irritated.
The girls had a good time looking at every inch of the room and eating lunchables for dinner.
This is the room.
DAY 2:
Day 2 - Calvin had a fit. Probably this is the only time I would actually be happy to have him have a fit, but we wanted to see what was going on in his head when he is really mad. The trigger for this episode was the dr coming in to see them and dave turning down the tv so Calvin couldn't hear well and then talking over his show. Dave had to hold Calvin in a restraint for a couple of hours so he wouldn't tear off his wires. He calmed down and the rest of the day was uneventful.
Dave had to go to work so Clare and I came in to keep him company from 2-7pm. Clare played games and watched TV with him. By 7 she was bouncing off the walls! (It was amazing to see the contrast between the healthy girls and Calvin. Normal kids should not be able to sit in the same spot for 48 hours).
DAY 3: The dr. made rounds at 9:30 and it took another hour or so to get the discharge orders in place for them to leave. They arrived home at noon. The dr. read all data before she came to see Dave and Calvin and discussed everything she saw (next post). She also re-read his previous EEG from last summer to compare.
The admitting physician was not our usual neurologist Our neurologist this week was Dr. Wang. She was very kind and did a good job with us. Normally we see Dr. Nespeca. We will go to Nespeca in two weeks to discuss the official results.
Overall, the study went very well. We got a lot of data. Cavin was super well behaved for the most part which was good. He got lots of rewards (one per 12 hours) for being cooperative and sometime soon we will all go to Iron Man 3 to celebrate him keeping his wires on for 3 days.
Monday, May 20, 2013
how happy is Calvin on day one of his inpatient video EEG?
Happier than a witch in a broom factory!
unlimited TV, and wii
no sisters
no mom
room service.
one happy boy!
Sunday, May 19, 2013
inpatient EEG
Monday Calvin has a 3 day inpatient EEG. He reports at 9am Mon morning and will stay 'til some point in the day on WED. He will have lots of electrodes on his head and will not be allowed to leave the room at all during that time. Dave, bless his heart will be staying with him most of the time. Calvin is excited to miss school and have free reign of the TV. The girls are excited to have a "girl party" while he is gone!
Hopefully Calvin will cooperate enough for us to get the answer to our important question: Are his troubles a consequence of sub clinical seizures?
Hopefully Calvin will cooperate enough for us to get the answer to our important question: Are his troubles a consequence of sub clinical seizures?
Friday, May 17, 2013
tough times
We have our ups and downs with Calvin. Sometimes thing go pretty smoothly for days at a time. Other periods, we have days in a row of really tough times, or we have a mix of good days here and there and bad days here and there. You just never know what you're gonna get!
Here are a few of the things that happen when things are not going well. When the incidence of these things increase it is a bumpy road. I have started to keep track of just these few items b/c it helps me to gauge when he is really bad. Sometimes it is hard to keep track of how often something happens as it may feel like it happens "all the time" or "hardly ever".
-not able to get on the bus in the morning. (not compliant)
-not being safe on on the bus and then I have to pick him up somewhere along the way (usually about 20 minutes from home) and drive him the rest of the way in to school. This is a tough one b/c the kids on the bus are all late as well as Calvin and it takes up my entire morning. The only way I am able to recover from this one is to pack the dog along and go to the beach for an hour after we drop him off.
-pulling his contact out of his eye and tearing it up.
-phone call from the school saying he had to be put in a manual restraint due to unsafe behavior
-not able to receive his reward for having clean language all day
With the above, we usually also see an increase in:
-full on fits out in public with swearing, destruction, hitting
-screaming fits at home, hitting of sisters, breaking things
-swearing
Most of April was pretty good. We actually had a couple of good weeks and very few incidents. The first week of May (right after my other blog post about how things were going well) we had a terrible week. I wanted to write about it at the time for my own records but I couldn't bring myself to re-live my week by writing it down. In a week period we went through 2 contacts. I drove him to school one day and had to pick him up off the bus mid-way through the route one day. He was put in a restraint at school.
That same week the behavior therapist we were working with told us she would not be able to continue working with him (after Calvin had a huge fit at home while she was here). Since she is not working with an agency she doesn't have the resources to get Calvin more help, she is not insured or covered with liability and she is pregnant. Even thought I was extremely depressed about this news for days, I tried to be grateful for the things she did teach me and for helping me to get on the right path in seeking out behavior specialists as we move forward. In 15 years of working she said she had never had to discontinue working with a child and that it wasn't because Calvin was SO difficult but just because of circumstances. Still, like I had many times before, it made me feel like I had the MOST difficult child on the planet.
We also found out that regional center did not accept us. The letter says "Calvin does not have a qualifying condition such as autism, epilepsy, cerebral palsy ..." WHAT!?! He does have epilepsy, so why are they saying he doesn't have a qualifying condition? Well, since he has only one medication they say he is controlled. I will appeal. From what I hear, everyone has to appeal to be accepted. We'll see what happens with that.
Fortunately, while I was wallowing in my pit of despair over my terrible week and losing the little bit of hope I held with my behaviorist quitting and not getting accepted to regional center, I met a lady at the park who works for another behavior agency in town and who does not have an indefinite wait list like I had seen at other places. We are working to get started with that agency later this month. I tried really hard to be grateful for meeting this woman and realizing that there is no need to throw in the towel and quit. The Lord has been so good to us so far and continues to show tender mercies enough to keep us afloat.
I am sort of a slow learner, but one thing I am learning is that while I should have hope, I should stop thinking I will find a quick fix. I gave a lesson in RS Sunday about trials. One of the things I learned is that when going through a trial we need to be prepared to accept the Lord's will and like the Savior say, "if thou could, let this pass, nevertheless, not my will but thine be done." We cannot expect to become like the savior if we are not tried as he was, or if when we are tried, we expect to have immediate relief. We need to partake of the bitter cup without becoming bitter. We need to "not shrink" from our trials.
There was an article I ran across by Elder Maxwell where he said, "not shrinking is more important than surviving." In his case, he was dying from cancer. He knew that not shrinking was more important than surviving because he knew he would not be surviving. In my case, I am not going to die. I am going to survive In my case, not shrinking is more important than JUST surviving. I am going to survive but it will take work and diligence for me not to shrink from my duties as a mother to all of my kids. To me shrinking is yelling, losing my temper, goofing off on the internet instead of reading to them, not being as kind as I should be. I think not shrinking can mean many things and probably means something different to everyone and even could mean different things to the same person at different times in life. However, in all cases, it means that doing our best and not losing sight of what is most important. Watch this 3 minute video:
http://www.youtube.com/watch?v=l70e1TfN34w
I loved these talks about trials:
https://www.lds.org/general-conference/2002/10/but-if-not?lang=eng
Here are a few of the things that happen when things are not going well. When the incidence of these things increase it is a bumpy road. I have started to keep track of just these few items b/c it helps me to gauge when he is really bad. Sometimes it is hard to keep track of how often something happens as it may feel like it happens "all the time" or "hardly ever".
-not able to get on the bus in the morning. (not compliant)
-not being safe on on the bus and then I have to pick him up somewhere along the way (usually about 20 minutes from home) and drive him the rest of the way in to school. This is a tough one b/c the kids on the bus are all late as well as Calvin and it takes up my entire morning. The only way I am able to recover from this one is to pack the dog along and go to the beach for an hour after we drop him off.
-pulling his contact out of his eye and tearing it up.
-phone call from the school saying he had to be put in a manual restraint due to unsafe behavior
-not able to receive his reward for having clean language all day
With the above, we usually also see an increase in:
-full on fits out in public with swearing, destruction, hitting
-screaming fits at home, hitting of sisters, breaking things
-swearing
Most of April was pretty good. We actually had a couple of good weeks and very few incidents. The first week of May (right after my other blog post about how things were going well) we had a terrible week. I wanted to write about it at the time for my own records but I couldn't bring myself to re-live my week by writing it down. In a week period we went through 2 contacts. I drove him to school one day and had to pick him up off the bus mid-way through the route one day. He was put in a restraint at school.
That same week the behavior therapist we were working with told us she would not be able to continue working with him (after Calvin had a huge fit at home while she was here). Since she is not working with an agency she doesn't have the resources to get Calvin more help, she is not insured or covered with liability and she is pregnant. Even thought I was extremely depressed about this news for days, I tried to be grateful for the things she did teach me and for helping me to get on the right path in seeking out behavior specialists as we move forward. In 15 years of working she said she had never had to discontinue working with a child and that it wasn't because Calvin was SO difficult but just because of circumstances. Still, like I had many times before, it made me feel like I had the MOST difficult child on the planet.
We also found out that regional center did not accept us. The letter says "Calvin does not have a qualifying condition such as autism, epilepsy, cerebral palsy ..." WHAT!?! He does have epilepsy, so why are they saying he doesn't have a qualifying condition? Well, since he has only one medication they say he is controlled. I will appeal. From what I hear, everyone has to appeal to be accepted. We'll see what happens with that.
Fortunately, while I was wallowing in my pit of despair over my terrible week and losing the little bit of hope I held with my behaviorist quitting and not getting accepted to regional center, I met a lady at the park who works for another behavior agency in town and who does not have an indefinite wait list like I had seen at other places. We are working to get started with that agency later this month. I tried really hard to be grateful for meeting this woman and realizing that there is no need to throw in the towel and quit. The Lord has been so good to us so far and continues to show tender mercies enough to keep us afloat.
I am sort of a slow learner, but one thing I am learning is that while I should have hope, I should stop thinking I will find a quick fix. I gave a lesson in RS Sunday about trials. One of the things I learned is that when going through a trial we need to be prepared to accept the Lord's will and like the Savior say, "if thou could, let this pass, nevertheless, not my will but thine be done." We cannot expect to become like the savior if we are not tried as he was, or if when we are tried, we expect to have immediate relief. We need to partake of the bitter cup without becoming bitter. We need to "not shrink" from our trials.
There was an article I ran across by Elder Maxwell where he said, "not shrinking is more important than surviving." In his case, he was dying from cancer. He knew that not shrinking was more important than surviving because he knew he would not be surviving. In my case, I am not going to die. I am going to survive In my case, not shrinking is more important than JUST surviving. I am going to survive but it will take work and diligence for me not to shrink from my duties as a mother to all of my kids. To me shrinking is yelling, losing my temper, goofing off on the internet instead of reading to them, not being as kind as I should be. I think not shrinking can mean many things and probably means something different to everyone and even could mean different things to the same person at different times in life. However, in all cases, it means that doing our best and not losing sight of what is most important. Watch this 3 minute video:
http://www.youtube.com/watch?v=l70e1TfN34w
I loved these talks about trials:
Elder Wickman - But if Not - General Conference October 2002
https://www.lds.org/general-conference/2002/10/but-if-not?lang=eng
Elder Bednar - That We Might Not Shrink - CES devotional March 3, 2013
http://www.lds.org/broadcasts/article/ces-devotionals/2013/01/that-we-might-not-shrink-d-c-19-18?lang=eng
Elder Maxwell - Apply the Atoning Blood of Christ - Conference October 1997
https://www.lds.org/general-conference/1997/10/apply-the-atoning-blood-of-christ?lang=eng
Elder Nelson - With God Nothing Shall Be Impossible - Conference April 1988
https://www.lds.org/general-conference/1988/04/with-god-nothing-shall-be-impossible?lang=eng
Wednesday, May 1, 2013
conversation
Calvin has a friend that likes to call and talk on the phone sometimes. He is from Calvin's school (special needs child).
Here is the conversation tonight. Calvin talks on the phone on speakerphone so we got to hear the entire conversation.
Calvin: hi
Friend: Calvin, I got bad grades.
Calvin: oh
Friend: Calvin, I feel really bad that I got bad grades.
Calvin: what'd you get?
Friend: a B-
Clare pipes in: Ohhh, that's bad
Calvin: oh
Friend: Calvin, I feel really bad about my bad grades (almost crying)
I whisper to Calvin: tell him if he is doing his best, it is okay
Calvin: If you are doing your best, it is okay.
Friend: (totally sobbing) Thank you Calvin, you are the best friend I have every had. can I call you again tomorrow?
Calvin: yes, bye, (click)
All of Calvin's phone conversations are funny because Calvin is so abrupt. This one was especially sweet/funny because of the topic as well.
Here is the conversation tonight. Calvin talks on the phone on speakerphone so we got to hear the entire conversation.
Calvin: hi
Friend: Calvin, I got bad grades.
Calvin: oh
Friend: Calvin, I feel really bad that I got bad grades.
Calvin: what'd you get?
Friend: a B-
Clare pipes in: Ohhh, that's bad
Calvin: oh
Friend: Calvin, I feel really bad about my bad grades (almost crying)
I whisper to Calvin: tell him if he is doing his best, it is okay
Calvin: If you are doing your best, it is okay.
Friend: (totally sobbing) Thank you Calvin, you are the best friend I have every had. can I call you again tomorrow?
Calvin: yes, bye, (click)
All of Calvin's phone conversations are funny because Calvin is so abrupt. This one was especially sweet/funny because of the topic as well.
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