Monday, September 27, 2010

School Frustration

Let me just say that I am about to rant about school but I feel a little guilty doing so because I know I live in a state with some of the best special education services. I know people in other states and countries might willingly give their left arm for these programs.

I feel very frustrated with Sam's school at the moment. When I feel this way I am never completely sure whether I am angry with the school or frustrated that Sam can't seem to progress - Whose "fault" is it? Is he more capable? Is the school good enough?

The seeds of my frustration were planted early. Right when Sam started school he developed an obsessive need to throw. At first it was food and small objects and he woudl just toss them again and again and again. . .Sam's program provides 12 hours a year of behavioral consultation. I had the behaviorist come and evaluate. Her first suggestion was to ignore the behavior (which RARELY works with Sam) and then to make him "pick up" every time he threw. He just incorporated the pick up into the stim. The behavior became a problem at school as well so they "took data" and developed a behavior plan for use in the classroom. That sounds great right? It took over 4 months for the behavior plan to be developed.

This seems to be a problem with the school. They take a "wait and see" approach to behavior problems at first, then they have to take data, then they have to consult with their outside group to develop the behavior plan, then implement. It takes FOREVER. With a kid like Sam this is not appropriate. Behaviors are very addictive to him and the longer they are allowed to brew, the worse they get.

Once a behavior plan is developed, I have to look it over and sign off. I sometimes have a good laugh. For example, a behavior plan was developed for Sam's vocal stims which are socially stigmatizing and very distracting for him. The first step in the plan was to tell Sam "shh" when he inappropriately vocalized. THe second step was to lightly touch his lips with a finger and say "shh". Seriously. This is what someone was paid to come up with. I signed off and added a note in which I told them the plan was not strong enough and wouldn't work. SUrprise - it didn't work and was discontinued. No plan was developed in its place.

Right at the start of school this fall, I requested a consultation with the behaviorist to discuss Sam's sleep problems. We were dealing with the chemical end with the neurologist but I knew there must be a behavioral component as well. The behaviorist confirmed that she got the request . . . . and that is it. There is no appointment scheduled or anything. It has been nearly a month. I understand that everyone is busy at the start of school. WIth all the budget issues, this person is being pulled in many directions, I am sure. But this is not some small issue. Sam's lack of sleep was affecting his mood, his behavior and his family. How can you let a family go this long without even a phone call? I went ahead and tackled it as best I could but I would have felt better with some expert guidance.

I am also frustrated because Sam didn't make much progress at all last year. His progress reports were terrible. His teacher was lovely but far less experienced than the one he had the year before. Sam liked her very much but he got away with too much. For example, in Sam first year at school, with the strong teacher,(age 3-4) he began using an open cup in the classroom, he transitioned from a Riftin (sp?) to a regular chair, his need for edibles was reduced and he worked for other things. His second year, last year, he went back to the Riftin, went back the sippy cup and not only went back to pretty much all edibles but he began working for lollipops. This is the teacher he is with again this year and I am not happy about it. SHe is lovely and sweet but he is a nudge and he needs some one stronger.

I try to keep telling myself that the problem might be Sam and not the teacher. If I have trouble with him, I can't expect he will work perfectly for her. But really. Really?

I called my case manager last week because there is another public school program for Autism and they have much more experience. I KNOW from my various sources that some autistic kids in town have transferred there due to concerns with my son's school. I want to visit the program and see if it seems more "appropriate" (have to watch how you say things to the child study team!). I just told the case manager that I had some concerns I wanted to bounce off her. She said she would call me a work at 2:30 today. My cell phone was nearly dead so I called her ahead of time to set up an alternate number. She was out for the day. I am sure there is a good reason. She was probably ill but I bet she properly cancelled her other appointments. I cleared that time slot during my extra help schedule to talk to her and I am booked the rest of the week. I guess I will have to call her on every prep period until I get through. grrrrrr.

Plus, I am getting fat.

Monday, September 20, 2010


Sam did very well last night. He cried again at bedtime but only for about 10 minutes this time. He slept through the the night until 5:30 and I have to get up then for work anyway. We are headed in the right direction.

Sunday, September 19, 2010

Night 2

Night one went better than expected. Sam woke at about 2:10 just like I expected. I took him to the toilet just to make sure that the need to pee didn't factor into any future night wakings. I put him back in his bed and repeated the routine. He cried and called for me. He pulled on the door. Then he tried the "naughty" stuff again, flicking the light switch and throwing a few toys. After about 10 minutes he climbed into bed and whimpered a bit. He switched to stimmy noises and hummed to himself for the next 20 minutes. At that point he let out one last "mama, mama" and then fell asleep. He slept for the rest of the night and didn't get up until just before 7am (late for him). I was very pleased. I was, of course, sad to make him cry and as penance I sat outside his door and listened to him long after I needed to. I was happy to see that he was in better spirits after a pretty good night's sleep (compared to what he has been getting lately).

Tonight, night 2, he cried again but for only 10 minutes and then he went right to sleep. I suspect we will repeat in the middle of the night but it seems the idea is sinking in. The possiblity of a full night of sleep for everyone soon is growing.

Saturday, September 18, 2010

Here we go. . .

Sam's sleep issues persist and I am very tired. I suspect Sam is tired too but it manifests differently in him. His pattern is to insist I stay while he falls asleep. This actually doesn't take too long so if that were the only issue I could live with it. He sleeps until somewhere between 12 and 2. I suspect his little brain has gone through 1 long sleep cycle at that pointatsge 1,2,3 4,REM,4,3,2 and as he re-enters stage 1, a point when you or I would turn over, resettle or adjust our pillows, he snaps awake, looks for me and runs out of his room in a panic. I take him to the bathroom, escort him back and help him fall asleep again. It doesn't take too long. I go back to bed but before I can get into a real sleep cycle myself he is up again. This repeats about every hour until 4:30 or 5 and then he is done for the night

I have been on the phone with the neurologist every few days and she has been gracious enough to return all my calls even though there is nothing she can bill for. We discussed various options. The first was to assume this is behavioral and see if going back to a school routine "re-sets" his clock - it didn't. Also, I could let him "cry it out"- I feared this option. The second was to increase his medicine in the evening to increase sleepiness (and/or increase melatonin). The third was to give him a heavy sedative for a few nights to "break" his habit of running out of his room looking for me (she mentioned this option but said she was reluctant to try it unless we were out of other choices). The final option was to try Clonidine.

We both felt that we wanted to avoid adding another medication unless nothing else works. We adjusted when and how much he gets of his current medication and increased his melatonin. The benefit of this was that Sam began falling back to sleep more easily during the night. It did not prevent the wake-ups. So while he got a bit more sleep, I didn't. After yet another week of this I got a call from Sam's school - they were concerned about how tired he seemed (they also don't like the lunches I have been sending but that is another story). I was a little surprised since I informed them of the sleep issues a while ago. Surprise, he is tired. I even put in a request for the behaviorist to advise us (a request which I have not heard back about - but that is a whole other post). I also felt terrible at the end of this week. I have a full teaching schedule, Sam's afternoon therapy hours and a house to maintain. Did I mention I am pregnant? - yeah, almost 15 weeks but friends, please maintain Facebook silence on this one until I tell work.

I spoke to my husband this afternoon about the next step. I felt strongly that it would be a bad idea to add more medicine before trying a behavioral approach. Now that Sam has a boost with his current med and his supplement, he SHOULD be able to stay in his bed all night. The fatc that he is able to fall back asleep when I am in there tells me he SHOULD be able to make it through the night. The running out and looking for me seems behavioral to me. I told him I wanted to try to extinguish the behavior starting tonight. The hard part about this is that I cannot lock him in his room (no lock), he can climb any baby gate ( he is VERY tall), and his sister sleeps in the room next door. I didn't exactly have everything figured out but I started our bedtime routine determined to succeed.

I put Sam to bed with his usual song and then I walked out closing the gate behind me. As expected he began to freak out. It is terrible when your non-verbal son manages to scream out "mama mama mama" and you can't go. He cried and stomped and kicked and cried some more. He threw all his pillows out and climbed the gate. I put him back in. Repeat. I added a second, pressure mounted gate on top of the first but he punched it down. I held the doorknob. He pulled and cried. Then he decided to be naughty to see if I would come in. He started flicking his light switch and throwing toys. He tried the door a few more times, still screaming. I heard him climb into his bed and bury his face in his pillows. He continued crying but it got less intense. He ran tot he door again, pulled and screamed. He got back into bed and cried more quietly. The he fell asleep. The whole ordeal took 20 mintues. It was only 20 minutes. I don't want to minimize how emotionally painfull those minutes were for him (or me), but now he is asleep in his own bed and he fell asleep without me.

I don't like that I had to shut him in his room. That is not the kind of parenting I wanted to do. I just don't see any other choice. He doesn't have the comprehension to reason or bargain with. And when it became a choice between shutting him in and adding more medicine, I felt better about shutting him in.

I suspect he will wake at least once in the night and we will repeat this process but at least my resolve will not be new to him. WHen he wakes I plan to take him to the bathroom, put him back to bed and walk out. If I have to hold the door again I will. In the past, with issues like this, Sam has taken about 3 days to adjust. I am hoping this holds true. If, after a week of this, Sam still can't make it through the night, we will consider more drastic measures. I am looking forward to a few 8 hour nights later this week. I can't even imagine.

Saturday, September 11, 2010

In Search of Community

One of the most difficult aspects of having a disabled child is the isolation. I have never been a social butterfly but I never imagined I would have pretty much zero involvement in the community. This has been on my mind lately because Maya is getting to a point where whe wants to be out and about, meeting people and socializing. I had one of those magical days yesterday when Sam had school and I didn't have work. Maya and I took a walk over the to local park and she had a blast. She played alone at first and then with an older girl who took an interest in her. This is something I cannot do when Sam is home. The park is not fenced in and I can't rely on him to stay within a safe distance of me. Plus, there tend to be a lot of wrappers and straws on the ground and Sam has a compulsion to pick them up. If the weather has been damp, the park has huge puddles and Sam makes a beeline for them. He will happily jump in them and drink the muddy water.

I have been looking for a church lately. I miss the routine of going on sundays and feeling connected to a community. I heard about a Catholic church that is starting a "differently-abled" mass. I am not Catholic, and in fact take issue with a number of things in the Catholic church, but I am open at this point. I don't have to take communion. Unfortunately, their idea seems to be to have a separate mass during which people with disabled kids can attend with their children. Sam can't sit through mass. He would splash in the holy water, chew on the books, and all kinds of other things.

I contacted two UCC churches in the area since that is the denomination in which I grew up. Pastors from both churches responded to me quickly. They were both very open to having me come see the church and meet the congregation. Neither has a special needs program or any kids like Sam so while I will probably go and look, I don't know if either will work out. WHat do other special needs families do? Do they just stay home and remain invisible? I have asked around and not found any churches with accomodations for kids with severe developmental disabilities. There is a Jewish temple a couple of towns over offering to work with kids IEPs in the religious religious school classrooms but as with everything, I think Sam's severity is more than most people expect. He cannot be in a class with typical kids. And I am not Jewish - I am open for the sake of community but I would prefer not to change religion.

What I really want to find is a church with a nursery-style room for developmentally disabled kids with bean bags, tramoplines and basic sensory toys. Sam could "play while I sit through the service. I don't think it exists around here.

I am at a loss on this one. I realize Sam will not understand anything about church or religion but I don't like the idea that I HAVE to leave him at home and just take Maya. I DO want Maya to have exposure to religious education. I firmly believe that religion must come from within though and it will be completely her choice if she chooses to remain part of a church once she is old enough to decide. I just think it is important to learn the history, the stories and the traditions while one is young.

If anyone reading has a low functioning child, what kind of community activities have you found? or do you just stay home like we do?

Friday, September 10, 2010

Next Steps

Thank you for the comments. I can't tell you how nice it is to get such thorough responses.

This week has only gotten worse. I increased Sam's melatonin to 4mg every night and I added magnesium. He still will not go to sleep on his own but he falls asleep quickly. Then he wakes multiple times during the night in a panic that I am not there. With the melatonin increase, he falls asleep again more quickly (before he often would NOT fall back asleep or take hours to do so) but he wakes up again an hour or so later looking for me again. Now, I suppose I could just sleep eith him but I am not willing for a number reasons. With the way Sam arranges himself on his bed, the only way I can lie down is to curl up at the foot of the bed. That is not a great way to rest night after night.

My next step if to try time release melatonin. I also contacted the behaviorist at Sam's school to see if she has any suggestions. If neither of those steps work, I may have to find a way to safely secure Sam in his room and let him cry. I know he CAN sleep on his own and I suspect this is a behavioral phase. It sounds mean but cutting him off is generally the best strategy with him - he doesn't "get" gradual change. I don't know what we will do with Maya those nights but I would rather have her sleep ruined for a few nights than mine ruined for months or years. If we still have no luck I will consider sleep meds. Cross your fingers for us.

Friday, September 3, 2010

How do I Bribe the Sandman?

We are back in territory I had hoped we left long ago - sleepless night. Sam used to wake frequently as a baby but he went back to sleep pretty easily. He also went through phases when he would sleep through perfectly. Just before he was 2 1/2, he began having a lot of trouble sleeping. He insisted on my staying with him while he fell asleep. Then he would wake in the night and want the same thing. Eventually he stopped going back to sleep for HOURS. At the time I was pregnant with Maya. I was beyond tired. One night I never even go to go to sleep because he woke so often. Then I taught the whole day. At that point I decided Sam had to cry it out. It worked like a charm. THe first night was tough but by night 4 he was right to bed on his own. He still woke in the night but he stayed in his room and on his bed until he fell back asleep.

At 3, Sam began waking more and more. He would stim on his bed for hours and look like a zombie the next day. On occasion he would get out of bed and I would have to settle him back down but usually if I repeated the bedtime routine, he would go back to bed. Even if he couldn't sleep, he would stay in his room. At that point, Maya developed sleep issues. It was pretty much my fault. When I went back to work, my milk supply dropped (for my body, pumpin gjust doesn't keep my milk flowing the same way nursing does. Plus, as a teahcer, I can't always take a break and pump when I would normally nurse). I insisted on nursing at night because I wanted to give Maya all the health benefits for as long as possible. Since she wasn't getting a great feeding from me in the evenings, she would wake a feed at night. She continued long after she was weaned and really only started sleeping well a few weeks ago.

I don't remember exactly when I started Sam on melatonin but it brough some peace to his night. Every so often he had a rough night but not with the same regularity we used to see.

At the beginning of the summer Sam began waking again despite the melatonin. It sook my nerves and sent me into a panic - if the melatonin stops working will we have to turn to a medication to get some sleep? When we did the Adderall experiment, things seemed to even out. He slept better in July. Of course then we had the side effects and stopped the Adderall. The first few days off he still slept fine. Just over a week ago he began to have some problem. he went to sleep well but woke sometime between 2 and 4wanted my company while he stimmed for a few hours. Most time he wouldn't go back to sleep.

This past week Sam also began having trouble falling asleep. He screams if I leave the room before he falls asleep. Luckily this seems to only take 20 minutes or so. Then he wakes around 1 or 2 and cries for me to come back. He then proceeds to NOT sleep until morning when he falls back asleep for a couple of hours. I have to go to work at that point (or take care of Maya depending on the day) and try to function feeling like a zombie.

I don't know why this is happening (besides the obvious "autism" answer. Has he built up a tolerance to melatonin? Has being out of a routine (no school in August) been too much for him? Is he going through something physically that he can't express? I just don't know. What I do know is that I can't do this much longer. I need to be able to do my job well and Sam needs to be able to start school again next week with the ability to learn to the best of his ability. I don't know what next steps to take. Slow release melatonin? give it time and see if he does better once school starts? Beg for Clonodine? I don't know but I need some kind of plan. Letting him "cry it out" is no longer an option because he can get out of his room (climb the gate).

Any suggestions are welcome.
-We have a bedtime routine
-he takes 3-4 mg of melatonin
-he is still on Risperdal