Just wondering what I should do about this...we haven't had an official FBA done yet, I wrote a letter last week and haven't heard back on that yet, (btw, how much time do they have to respond to my request?)
But since the beginning of the school year Mason has been napping at school everyday. At first he was having these huge meltdowns and I/we thought it might be because he was wearing himself out because of these...well last week and into this week, these meltdowns have been decreasing in size and intensity, but his naps seem to be increasing in time. We have a communication notebook and she wrote in there today that he slept from 10:30-1:30!!
The director of autism for the school district came in yesterday and observed him for awhile and she is baffled as to why he needs these long naps. She saw some behaviors that she was able to help the teacher identify what was causing them, but yesterday while he was being observed, apparently he was working really well with his OT and just like that something set him off, he began to cry and scream, his OT offered him a break in the beanbag corner for 5 minutes...and she said he was asleep within a couple of minutes.
Mason has so much going on with seizures, and mood problems...I'm just not sure who I should be approaching about this. Do I call his neuro? Could there be something physically wrong with him and I should be calling his ped? Is this behavior related and I call his psych?
I don't think it's seizure related...she isn't describing anything that would make me think that...he did start new meds last week, but this was going on before these meds were even started...I'm just at a loss here!
Anyone have any suggestions or advice for me about this?
I really appriciate any thoughts at all, and thanks!!
Oh P.S. Mason is 6yrs old and in 1st grade...he was in all day kindergarten last year without this problem...this school day is the same amount of time as last year.
Maybe he is still adjusting to his school routine. Quinn used to used to fall asleep at school a lot when he was younger. If he didn't fall asleep in scholl he usually would on the way home.My immediate thought was that something is bothering him and he just needed to shut down when he naps. Second thought is to wonder how he is sleeping at night REALLY? Probably the only way to figure this out is to do a sleep study - this is where you (or dad) stay overnight at a sleep disorders clinic and they hook him up to all sorts of things (it's not fun - my ds went through this at age 4) and they see how he is sleeping. That's how my son was diagnosed with Restless Legs Syndrome.
Until you said he was in all-day kindergarten I did wonder if the day was just too long for him. But as someone else asked - I do wonder if it is the AMOUNT of work or the demands placed on him this year as opposed to last.
I would have him checked out by everyone - ped, neuro, etc. Because you have to figure out what is going on - to me this is a sign that something is wrong.
Keep us posted and good luck!
BTW, I don't know how long the school has to respond and don't know if it varies from state to state. I'm guessing tzoya might know!
Hi emerald_521,
Sorry to hear about Mason falling asleep in class. Poor baby - he's such a handsome little fellow. My initial thought was his iron levels. Has he been anemic before and how is his diet? My son Christian is also 6 and just started 1st grade. It is a really big adjustment for him also. Chris also complains about being tired all the time. It's early release day at a school and I told him that his dad was picking him up early. He said when he gets home he want to sleep because he's tired. I think he gets a good sleep nights and sometimes he does take naps when he gets home from school. It's just another worry on top of everything else. Chris doesn't have seizures but he has migraines often. I give Christian a vitamin supplement as he is a poor eater and I wouldn't be surprised if he is anemic. I carry a strong trait for Thalassemia (anemia disease) and could have passed it down to him but drama and the trauma involved in getting bloodwork for him is just too much.
It seems the school is very understanding and want to help so that is a great. Please keep us posted.
Thanks Daniel's mom. I don't think it is the depakote because he has been taking that for a year and a half now, unless it is the depakote causing anemia or his ammonia levels to be too high...but he was taking the depakote last year and didn't have this sleepiness in school.
Did you take the iron/b12 because of the depakote? We might be weaning him from the depakote within the next few months...we are gradually building up his lamictal and once we are there we might be able to wean the depakote. Keeping my fingers crossed!
Kathy, I was in touch with an advocacy place yesterday and they are going to have someone call me ASAP, so I can find out more about what to do with getting the right behavior plan in place! I'm kind of nervous, because last year when I had to bring in the special needs director, the school looked at me like I was going over their heads...this is a new school, so I hope they don't take this as a bad thing, just that I want to help Mason! Thanks for all the help and advice! I wish I could get him into ABA now and see if 1/2 day of school would be an option at this time, but unfortunately we are still 14 months away on the waiting list and we just can't afford to do ABA out of pocket! That insurance stuff makes me mad!
Anyway, thanks again all! All this stuff is so time consuming and the waiting is so hard when it comes to your child!
Niki,Thanks guys. I think I'm just going to put in a call to ALL the doctors involved with Mason...just get some opinions and advice from all areas!
I do not know about BCBA's in our area. I did put in the letter I wrote for the FBA that I want it done by a BCBA, but honestly did not know if there is even one in our area...we aren't far from a major city, so I thought maybe they would get in touch with someone from that area. I'm going to do a little more research about it, just because if they put up a stink (I always assume the worst) I can give them some recommendations on who to go to. I hope they don't try to write off the observation he had the other day as his FBA...it just happened so fast I kind of wonder if they did that after I asked for the FBA.
As far as sleep is going...he appears to be sleeping well...in fact even with the napping he has been doing he is still going to be at his regular time...but that is sort of telling me that something must be going on, because why would he need soooo much sleep...this is the same boy, who could go on a couple of hours of sleep in the past...but I do know that even though he appears to be sleeping well that doesn't mean he actually is.
Kathy--I was really concerned when they moved him into first grade...I didn't think he was ready-emotionally and academically. But they assured me that he needed to be in first grade...and now we are going into the 4th week of school and I'm just soooo worried about all the lost learning that is going on.
Anyway all...thanks so much!! I'm going to make some calls and I will keep you all posted! You guys are the best!
Could he be getting up in the middle of the night quietly and no one know??? The only way I know when my ds is up at odd times is the sensor alarm( its a motion detector that only has an alarm go off in our bedroom so he doesnt hear it and get scared) when I hear the alarm I get upa nd he is quietly looking at books in his bed or he might have a few toys in thier... but he eventually goes back to sleep. One day after he did this, he fell asleep at school. Just a thought! Good luck!Hi! - Here is link to a listing of BCBA's in the country. If you click on "Certificant Registry" and then enter where you live, it will bring up a list of names.
http://www.bacb.com/consum_frame.html
Anemia is easily treatable and if Mason is anemic he will have much more energy and will be able to focus/concentrate better. I have to give Christian a multivitamin with Iron supplement because his diet is so bad as well. It’s very high in sodium but if I don't let him eat those things he'll starve.
I hope that whatever is causing Mason to nap at school and feel so tired is resolved soon. Try not to stress yourself out too much and let us know what the drs say.
Mason's diet is pretty bad...he only eats a few specific things...none which are all too healthy, unfortunately.
I am a little worried about this anemia thing...I don't know too much about it...is it something that is treatable, or is it something that requires long term care, like meds? The last thing Mason needs is more meds, so I really hope it's not that!
Oh and thanks for the sweet words about Mason! Your kiddos are adorable too...Christian in that graduation outfit is so sweet! They took all the preschool and kindergarten graduations away from the kids 2 years ago...can't understand why, I loved it when my older 2 had theirs!
Thanks for all your help!
Well here is my update so far...
neuro is faxing papers for lab work...sometimes Depakote (one of his seizure meds) can cause anemia...even though he had labwork done last month she said it could still be an option...also she wants ammonia levels checked...again the depakote can raise levels, which can result in sleepiness.
His psych wants to decrease his zyprexa by half in the morning...dropping him down to 2.5mg...she said she doesn't believe it is the meds, but that is usually the first route to go when things like this appear.
I, myself, don't really feel that it is one of his meds causing the problems, seems more of a shutdown than a medical, but I guess we won't know until we examine everything.
Thanks for all the help, I will keep you posted.
Seizure/mood meds when wareing off can cause sleepyness also. Depakote is one of those. With this med he needs checked at least 2 times a year. I took this in childhood for my epilepsy. I also required iron/b12 shots. Niki,