Stim

My conclusion that Clonidine was helping Sam during the day was wrong. He was just sick. It started with about two weeks of fatigue, then a cough and then high fevers. He got so bad he became very dehydrated. It ended with his first round of antibiotics. As soon as he was better he was insanely hyperactive again. Sigh. I should have known.

Sam's new stim involves taking children's books (board books) and putting them on the edge of a counter or table. He opens the cover and then hits it. He flaps his arms and watched to see if the books falls to the floor (it usuallys does). He repeats this again and again - perhaps varying the location. At times he gets very worked up and starts throwing the books. Some throws are long throws, designed to go across the room. Other throws are hard throws, meant to hit the ceiling. Eventually these books break and he chews them a bit. He engages in this activity fom the time he wakes up until the time he goes to bed. I have repaired many books and thrown away many more that were beyond help.

We have tried, without success, to defeat this stim. The problem is that Sam does not engage in a stim for a certain period of time (10 minutes, an hour) and then snap out of it. Pretty much every minute of his waking life is stim - that is the point to which he has regressed. There is no other activity to which he can be re-directed. I could force him to do a puzzle for a minute or to but then he is right back to the activity. I have spent the last coupld of weeks following him around trying to re-direct his energy and it is not making a speck of difference. After following him around all day yesterday, my birthday, until my hips and lower back were in too much pain to continue (pregnancy), I gave up. I do not have the ability to win this battle. I will talk agin with our home teacher next week to see if she has any other suggestions. I will try them with my strongest resolve but I suspect we will be right back here again in a few weeks.

WHat makes this stim so sad for me is that he is destroying the very same books I remember readin with him before he got this bad. He loved books. He would hand me a book and say "bead?". We would read and read. He would smile and point to parts he remembered (the moon in Hickory Dickory Dock, the blueberry bush and the cat in Yertle the Turtle). Now trying to get him to sit for more than 10 seconds is close to impossible. Getting him to listen to a story makes his skin crawl and he starts yelling and jumping or running. Even if I could "train" him to sit and listen, he takes no pleasure in stories anymore. Whatever he once understood is gone.

I suppose I should feel happy that Sam managed to be pretty calm over the Thanksgiving holiday. We managed to host dinner without too many issues. The hard part is now family keep commenting on how pleased they are with his progress. It is a reminder of that hopeful feeling I felt in November - the feeling that I was getting a tiny bit of my boy back. But now it is gone again.

Knitting

No, it is not a metaphor for Autism, I just like knitting. I have known the basics of knitting since I was very young. My grandparents owned a wool shop in England when they were alive. Their house was attached to the shop and I remember walking from the kitchen to the shop many times a day when we visited to walk around and browse all the yarn. Each visit I would passionately start some project and then drop it as I lost my focus. One summer when I was in high school (or was it early college?) I decided to try something more complicated than a stockingstitch or garter stitch scarf. My grandmother taught me to read a pattern for a basic cabled hat. It was a success and it drove me to try more things. I moved on to crochet and made a brown and blue blanket for my college bed. I didn't do any major projects for a while after college. After Maya was born I started to pick up knitting again. I heard an interview with Debbie Stoller (Stitch and Bitch books) and I tried a few of her projects with varying degrees of success. I ordered a book of baby knits because baby projects move a lot faster than projects for me. Below is my first attempt at something for Maya - a basic rollneck sweater. the neck it too wide but the rest worked well.

The second project for Maya looks ok but it isn't very practical. This green cardigan is way too stretchy because I just icked the wrong yarn for it.

I made a few things for myself that I like and one or two that I don't. I also made a beautiful Debbie Bliss sweater for Maya with pockets and everything but she doesn't like it because the neck it too high - sigh.

Now I am working on a striped cardigan for Maya . It is a Debbie Bliss pattern made with Cascade Pima cotton yarn . I started it a long time ago but I had to put it aside for a few months. After Maya was born I got a small patch of eczema on the middle finger of my right hand. It slowly spread over the next year and by the time I was pregnant this summer it was fully covering three fingers and spreading to the other hand. My skin was craking and bleeding pretty much every day and knitting really hurt. This sweater was supposed to be a Christmas present for Maya and a while ago I gave up on that idea. Then, out of the blue about 2 weeks ago, my hand eczema cleared up. I have no idea why. Pregnancy keeping down my immune system so auto immune issue are reduced? I stopped throwing up a few weeks ago and I can keep down my vitamins and DHA? WHo knows. But now I am furiously working on the sweater agsain. I don't know if I will make it! I have finished the body and I am a third of the way through a sleeve. I have to finish this sleeve, make the second one, sew it together and then make the button band and collar.

That photo is from early this summer before I put the project aside.

I don't really know why I like knitting. Making your own sweaters certainly doesn't save money. There is no guarantee that the lovely sweater being displayed on the pattern is what you will get in the end unless you are very good.

I have always like to make things - painting, photography, sewing, knitting, etc. I have nowhere to paint these days. Sewing isn't practical at the moment with the kids always around. I don't have a room where I can set up my machine easily and also keep tthe kids away from the needle. I recently had the machine fixed up and I am thinking about trying to use it after the kiddos go to sleep if I can keep my eyes open.

Knitting is actually a little easier for me to work on around them, especially in the summer. I work on circular needles and keep a ball of yarn in my pocket while and follow them around in the backyard.

People ask me if it is relaxing. Most of the time I would say no. I work on projects with fury, always thinking about finishing. It is the same way I read - finishing the book in 24 - 48 hours. I am also always thinking about what else I want to make. There is something though about the rhythm of the needles when I am sitting down in the evening. I like the feeling of getting a few rows done before bed. I often think about whether I am getting the same type of satifaction from the needles going in and out of the loops that Sam gets from tipping a cup or a book off the table 1,000times in a row. I guess the difference is that I have a vision of where my activity is leading. There is an end in sight, not just a sensation in the present.

My next project is a kimono sweater for Maya using another type of Cascade yarn. I tend to shop the sale items on http://www.jimmybeanswool.com/

The pattern is this one:

http://www.jimmybeanswool.com/knitting/yarn/BlueSkyAlpacas/BlueSkyAlpacasPatterns.asp?showLarge=true&specPCVID=7280

Back to knitting if Sam can manage not to break anything for a few minutes : )

I Won!

See below:
http://www.ourownrooney.blogspot.com/


Do you ever tell stories that start "My friend's brother's girlfriend's roommate . . . " - there are some connections we have that seem so distant. How did I end up religiously reading a blog about adoption from Ethiopia? Back before Autism, right after Sam was born, I was sure our next child would be adopted. My niece was adopted from China and her parents suggested I check out Gladney because the man who helped them with her adoption now works there (or did a few years ago, I have never spoken to him). I was drawn to their Ethiopia program. I read about their process to get familiar with everything involved and I followed the blogs of a few families who published their stories. Lori Rooney's blog is one I was drawn to. She makes me wish I lived in Portland.

Fast forward to now. Sam is five and severely Autistic. We have 2 year old Maya. Along the way, adoption plans had to be put off the table. The money, the travel away from Sam - all too much. I sponsor a child through CHildren's Hope Chest (who is in an orphanage but is not available for adoption). The Rooneys are in the process of adoption their second child, a five year old girl. They held a raffle to help with their travel expenses. Up for grabs was a handmade doll by a very crafty lady whose blog I also read from time to time (for the craft projects, not the adoption stories). This woman's name is Autumn and her blog inspired me to dust off my sewing machine and get it tuned up. I haven't actually had time to use it yet but maybe soon. . .

I still read Lori Rooney's blog because I enjoy her writing style and the issues she raises. I made a donation to enter the raffle and I won! I would like to use the doll as a "big sister" gift for Maya when the baby comes. Sam's disability requires that he get a certain amount of attention. A new baby will also need a lot of attention. We will, of course, try to make sure Maya gets the attention she needs as well but it will be nice to be able to give her a really special gift. I might even order an extra when I know if the baby is a boy or a girl. The gender is written on an piece of paper in an envelope in my car. I haven't looked.

The dolls look like this:

http://autumnanddan.blogspot.com/2010/11/rooney-raffle.html


Autumn has an etsy shop. Check out her items.

The Pregnancy

I am now 23 weeks along and I haven't really posted about this pregnancy. Superstition may have played a small part in that but mostly I just didn't really know what to write. My early ultrasound at 11 weeks went well. I had my 20 week ultrasound (at 21 weeks) and they couldn't see the spine properly so I had to go back a week later. The whole week that followed I convinced myself that the baby had a spine deformity. The baby had flipped over by then and the doctor was able to see everything. I have a placental lake that the doctor wants to check on in a couple of months because there is a very slight chance that it could affect growth. So far there is no evidence of that. The baby is totally normal for age.

I didn't find out the gender. I found out for both of my other children and for both of them I enjoyed knowing. For some reason I feel like waiting until the delivery room this time. I had a strong feeling about the gender for the first two babes but I don't this time. I was sure it was a girl in the early months but over the past few weeks I have had the feeling it is a boy. I really don't trust my instincts on this one. My mind is so distracted with Sam's issues of late that I don't think I have had time to process any real intuitions I may have. A girl would make me feel safe. I know girls can have autism too but it is less likely. Perhaps having Maya gives me a false sense of security. Lately though I have been allowing my mind to wonder about having a boy - a typical boy. That would be great too- more than great. I just know I would spend the first year and a half on edge.

I was much sicker this time around. The morning sickness started a little later (8+ weeks) but it lasted until about 19/20 weeks. Near the end I wasn't throwing up everyday anymore but I was often close to it. Even though I have only been vomit free for a few weeks, I already feel like that stage was ages ago. That must be how people allow themselves to get pregnant again - If I have already forgotten the mroning sickness weeks later, imagine how little I will rememeber about it in a couple of years!

Sam is unaware of the pregnancy. People ask if I have told him. I haven't hidden it but he wouldn't know what I what I was saying if I DID tell him directly. Maya knows (as much as a 2 year old can know). SHe calls the baby "Baby Juice". She is very excited to know when Baby Juice is coming but I don't think the isea has much meaning for her. It is very cute to hear her talk about it. Anytime she sees something baby related she says, "That Baby Juice's clothes?" "That Baby Juice's blanket?" Very cute.

I just made a donation. I have exchanged messages/comments with this mom a few times. SHe is insightful and her posts are interesting to read. This a great chance to win a hand made doll for your child.


http://ourownrooney.blogspot.com/2010/11/ode-to-my-friend-and-chance-for-you-to.html

Not all bad

Even thought the sleep issue is far from resolved, I have seen some very nice things since Sam started Clonidine. He is a little calmer. I know many people object to the idea of controlling behavior through meds (and I might have agreed with you years ago). For Sam though, his hyperactivity and impulse control issues were becoming safety issues. He compulsively throws hard objects at the ceiling, he feel compelled to put his mouth on countertops and pots on the stove (regardless of whether they are hot), he puts rocks in his mouth, he jumps off of high surfaces, he jumps straight up in the air and lands on his knees, etc. Years of strictly bahavioral therapy didn't help this. If anything, I feel he has gotten worse. So, with the Clonidine he is toned down a bit. ALso, he is more affectionate. He reminds me of the Sam he was when he was until about age 3. He used to sit on my lap a lot, give full body hugs, nuzzle shis head into me and sit next me on the couch. He is doing this again. It is so wonderful to spend the last few mintues before bed sitting on the couch with Sam rather than trying to stop him from throwing blocks and books at the ceiling. Finally, he is a little less frantic at night. He still wakes multiple times but he settles down a little better.

I don't know exactly how Clonidine works in the brain but I know it has a number of applications. It was originally a blood pressure medication. It is also used as a sleep aid, for ADHD and as an aid for smoking cessation. For Sam, it seems to be a positive addition. We are still working out the dosage. I think we have to wait to finalize that because Sam has a fever this week and it is hard to tell whether he is groggy because he is sick or because he needs a lower dose.

I would never tell another parent to put her child on meds but I am very comfortable with this choice we have made.

Nevermind

Nevermind. It is 7:30 am and Sam is resting on the couch from a nearly all-nighter. I have been up with him since 1 am. There is no end in sight.

It. . .might. . .be . . .working. .

We started the Clonidine a while back. The first doses didn't work, at least not enough to get him through the night. I added a child proof door knob cover. It didn't work (b/c Sam wouldn't give up and door sucks). I took a long hard look at our medicine experience and decided it was time to re-evaluate. I do not feel that any of the manipulations of the Risperdal have helped Sam. I have weaned him off. I DID see some minor effects from the Clonidine. It helped him throught the first half of the night and it seemed to affect his mood during the first part of the day as well. He was a little calmer and happier. I spoke to the neurologist yet again and she gave me the go ahead to try slight increases in the Clonidine. Last night Sam got 1 3/4 tablets (.1 mg tablets) and he slept soundly until 4:15 am. It was great ( Of course, Maya still woke up but she usually just needs to check in). Tonight we go to 2 tablets and that is our limit. We are going to focus on this for now and just worry about getting Sam's sleep under control. Two people with no knowledge of his medication have commented on how happy he seems lately so I think that is a good sign. If it works, I will just have to re-train MYSELF to sleep through the night.

Obviously, wallowing in self-pity is not a long term solution so I have to make another plan. A reader suggested a child proof door handle cover and to be honest, I never thought of that. I bought one this morning and I am going to try it tonight. If Sam simply tries to turn the door knob, he will not be able to get out. The problem is, most of our house is absolute crap due to years of not being able to properly maintain it. The basement is gross, the windows are drafty, the back room is barely insulated. Along with that, none of the bedroom doors close properly. I have slowly been trying to replace the doorknobs that are so old they no longer turn. The doors also need planing since they don't quite match up witht he frames anymore. Sam's room has a door I fixed up a while ago but it doesn't quite latch close as securely as I would like. All it takes is a good shove and you don't need to turn the door know. So, if all Sam tries to do is turn the knob, it will probably stay shut but if he pulls, even without turning, it may open and then I will be back to hold the door closed. I bought a lock I can put on if necessary but I would liek to try all options that don't make me feel like a horrible person first.

I also bought Sam a long body pillow to try to make his bed more cocoon-like. I don't think that will have any major effect but the pillows were on sale.

Wish us all a good night's sleep.

No Sleep 'til Brooklyn

So it is not working. At least not yet. Sam has regressed back to where he was a while ago. He wakes around midnight and wants to sleep in my bed. I take him to the bathroom and put him back in his room. He yells and cries and tries to leave. I hold the door shut until he settles down. Repeat every 1/2 hour to hour for the rest of the night. At around 5 or 6 he will end up in our bed so he can grab an hour or two of sleep before school. It is too late for me at that point. He manages to stay awake with 2 meds that should make him sleep and melatonin. That is one messed up brain.

A friend at work suggested that I might have to put a lock on his bedroom. Then I wouldn't have to stand by his door most of the night. I know many families have had to do so for safety reasons. I just hate the idea. When I became a parent I never imagined locking my child in a room. But I know I may have to. If any of you have had to secure your child in a room at night please share.

I don't know what to do next if this doesn't change. Sam is holding it together since he gets that nap before school. But how long can a little boy last on so little sleep? I am trying to function on about 2 hours of sleep a night and I feel horrible. So far, I don't think it is affecting my job or the preganancy but how long can that last? I sort of snapped at my mom that other day because she said, " you really need you sleep; you're pregnant." I know she was just showing concern but in the moment it just made me mad - as if I don't know I need sleep? As if I am not getting any on purpose? If I had a solution I would go for it but I don't.

Sam has continued to have sleep issues this week despite my manipulating the things he already takes. I spoke to the neurologist again today and we are adding Clonidine. I have no idea if it will work. I am pretty much assuming it won't. Even if it does I am pretty certain it will stop working a few weeks after we start.

Sam continues to have episodes of chewing/lip smacking/teeth grinding in his sleep. My husband now thinks it might be seizures too.

I want to have hope because we are trying a new med and Sam is starting a new school but I really don't feel any. AFter a day of pulling rocks out of Sam's mouth, trying to stop him from throwing things at the ceiling, narrowly avoiding a major accident when Sam threw a boot at the dinner table missing the light fixture and my husband's plate by inches, and trying to explain to Maya that her brother just doesn't understand b/c he threw a shoe at her face, I don't have much positive left. He isn't being aggressive, it is all stim. This was all after a day in which he had lots of attention and lot of chances to work out his sensory issues. We played outside for hours - he went on the swing, jumped on the trampoline, and ran. Nothing turns down the stims.

Hopefully it will get better but here's the thing - the problem with throwing all your energy into trying everything is that eventually there is nothing left and you are really really tired.

I miss the little boy I had 3 years ago, before these stims came out, more than I can possbily describe.

Seizure?

Sam had an odd episode last night. He woke up wet, which hasn't happened in a long time, at about 1am. I took him to the bathroom and changed his clothes. I put him back to bed but he couldn't sleep. He hummed and bounced for about 2 hours. During that time Maya woke a few times (she tends to wake up hungry because she refuses to eat dinner - seriously, I can't get her to eat after 5 o'clock). I am sure all Sam's noises didn't help her relax. At about 3 am Sam came out of his room and I broke with the behavior plan and let him come to our bed like he wanted. Pregnant me was just to tired to fight him the rest of the night. He fell asleep in the middle of our bed and rested very well. It wasn't exactly comfortable for us but at least no one was crying. At about 4 am Sam started making an odd noise in his sleep. My husband thought it sounded like chewing but to me it sounded like lip smacking. Either way, it went on for a few minutes then stopped. Then it repeated a few times. He didn't wake at all.

I looked that up this morning because I thought I had read something about odd motor movements being connected to a certain type of seizure. Lip smacking in sleep or along with zoning out can be a sign of Partial Complex Seizures.

I called the neurologist about the sleep issue and to ask if the lip smacking sounded like a seizure. As I expected, she can't say for sure. We would have to do a video EEG to learn more. I am thinking about it but I have no idea if Sam could tolerate it. As for the sleep, she advised increasing the Risperdal slightly for the next few days to see if that helps. If he is able to establish a good pattern, slowly lower it again. IF it has no effect, reduce and try Clonidine.

I hope one of these options works but I suspect we will battle to insomnia demon for the rest of our lives. I am trying to see if I can spare a sick day from my maternity leave to take a nap.

The Monster Returns

Over the past two weeks Sam has started waking at night for increasing amounts of time. Last night he woke up at 11:30 pm and he has been awake ever since. We have not changed medications or supplements and we have not changed his routine. I knew we would be back here again. Every night since the behavior plan was put in place I have been going to bed with my fingers crossed. It started with middle of the night wake ups. I would take him to the bathroom just in case and then put him back to bed. Each day his level of protest grew. As he became more upset during the night it got harder for him to go back to sleep. Last night he went to bed at 8 and woke up at 11:30. Then he tried to come out of his room every 30 minuted or so. Finally, he gave up trying to come out at about 3 and settled for making noises and kicking his wall. At 5 he came out again and he was done for the night.

I am pretty much out of ideas. We have a routine, he gets lots of outside time most afternoons, he had plenty to eat, his room is a good temperature, he has a white noise machine. . so now what? I really am not convinced it is worth continuing to give him risperdal if is isn't going to help him settle down when he really needs to. I am going to call the neurologist but I don't know if this is one of her Saturdays at work. Not sleeping is not an option - for him or me. Clonidine? more melatonin?

Signs?

Do you believe in signs? I don't know what I think. But today I thought I was being pointed in a certain direction when I visited the new program Sam may attend.



Many months ago, one a particularly bad day I sat on my deck with my head in my hands and cried (this happened many times but this day was important to the story). My nearly 90 year old neighbor spoke to me a little later in the yard. She asked about Sam and about me. I don't remember how it happened but somehow in the conversation she offered me one of her statues of "the blessed mother". I think it came up because I mentioned that one of Mark's patients gave him a saint card for Sam and I asked what she knew about that one. How do you turn down the offer of a statue of one of your neighbor's most sacred figures? SHe gave me a very simple white figure of Mary. It is in my dining room and when I walk by I am reminded of all the things mothers go through. WHen I arrived at Sam's new program, which turns out to be housed in a Catholic School, th, essentially living with our hearts outside of our bodies. There was almost the exact same statue right out front. I realize that is not huge but it struck me as I saw it.



In a previous post, I mentioned hearing about an Episcopal church that has a service for families who have members with Autism. When I visited Sam's new program I found out that the church is about a block from the site and, in fact, they rent 2 classrooms there as well. I accidentally drove by in on my way home. Another sign?

Church Search and School Update

I tried a church this morning - on my own, without the kids. It was really lovely. The congregation is tiny - there were about 50 people there total. Because the congregation is so small, during the passing of the peace, everyone literally greeted everyone else. For the last song, everyone held hands. It might just be hippy-dippy enough for me. I enough just having an hour of peace and quiet. I also think it was helpful for me to remember to think about people besides myself - to remember flood victims in Pakistan, people who have lost their jobs in this economic slowdown, victims of violence in the Sudan, and people who are sick and dying. I was able to put aside being sad about Sam and all his Autism has taken from our lives (and his life)and think about how lucky we are to have jobs a safe place to live.

I might go back another week or I might try a couple of other places. There is another church of the same denomination in a different town and I might check that out. I also heard about an Episcopal church that has a service designed for families dealign with Autism. It is a short service and the kids are not expected to sit the whole time ot to be quiet. I would like to try that one week as well. Then I have to make a choice. I don't know if I want to make church my "get away from it all" activity and just go by myself for now or if I want to kind a place I can bring the kids. I am not sure I would get the same benefit from a service with Sam chewing paper, jumping off the pews and making his noises. He is not going to understand the concept of church so is it worth choosing a place based on him? In a perfect scenario the church would have a regular service with a special needs Sunday school room. Then, I could get the nice calm church service and Sam could have an interesting place to play. But I can't find such a place. Tough call.

I met with the Director of Special Services for my town and he was open to considering another placement for Sam. True to form I brought 2 typed pages of notes on my concerns (since my first negative experience with the district I have been a nut about writing down my concerns and requests. That way everything is documented and dated - most special education issues have time limits and that way no one can jerk us around). He actually seemed upset that we were only presented with one option for Sam's original placement. Now, it is very possible he was giving me a sympathetic act. I am visiting the other option this week. It is another public school program a couple of towns over. I have heard good things from other parents and I know this school has more experience. It may be no better but I am excited to see. If it is no good then I have to battle for other options.

Dance

Both of my kiddos take "dance class" this year. Maya takes a Saturday morning class for 2 year olds. They have to wear full ballet gear (pink ballet shoes, pink tights, and a pink leotard). I was skeptical at first. 2 year olds? Really? But Maya loves to go to places full of kids so, since pre-school was out of our price range this year, I put her in dance class. SHe LOVES it beyond belief. The first day, when other kids cried or clung to mom and dad, Maya marched right in and got busy. They don't exactly get a lot of dancing done but the 45 minute class is full of great activities. They learn to follow directions, do things in a group, and pay attention to a teacher. The very very early stages of dance are introduced - toe pointing, leg lifting, "arms like a pizza pie". Maya cries when it is time to leave. I am sure that any recital they do will be ridiculous (did I mention they are 2?)but she is learning a lot along the way.

THe biggest issue I have with it is what to do with Sam while Maya is in there. The first day, he did a beautiful job listening to his earphones and eating a snack. Last week was a disaster. There is a door at the end of the hallway with an alarm on it. . . Luckily for me the owner took Sam into one of the other studios and let him run around. I ran to the bathroom to try not to cry in front of the other parents. As I have said many times, Sam has NO appropriate interests so I can't bring him a game, a puzzle, a handheld video game or anything like that. I told my husband that I really need him to work his Saturday schedule out so that he can either stay home with Sam or take Maya to class. We are getting to the point where I really can't do all this alone anymore. My husband is not used to having much more responsibility than getting Sam on the bus in the morning. All other times, including weekends, it is assumed I will be responsible for the kids. Now that they are staring to do things outside the house I need him to fugure out how to be more involved.

Sam also takes dance class. The owner is an amazing person. A few years ago a mother with two autistic daughters approached him and asked if he would consider doing anything for autistic kids. She was having a hard time finding anything in which she could enroll her kids outside of school. The Beyond Boundries class was born. There is one teacher but some of the other adults that work there and some of the students who dance there help out so, usually, each kids has a one-to-one "aide". I signed Sam up because the owner of the school is my neighbor. I really didn't think it would work out. We tried sample classes over the summer and Sam was way to hyper to participate in any of it. But I signed up anyway. As the start date grew near I began to doubt whether this was worth the time or the money. I was ready to quit before we even started. The first class was as ridiculous as I expected. Sam put everything in his mouth and ran around the room like a madman. The second class was pretty much the same but he did clap his hands and sway a few time. Today was our third class and Sam did great. He is still nowhere near the level of participation the other kids demonstrate but the difference from the first day until now is huge. Sam jumped with the music a few times, kicked the pad when instructed, swayed back and forth with his aide (the owner). Much of the time Sam looked spacey and confused but there were a few moments when he actually seemed engaged. I think we will stick with it for a while.

School-sleep-pregnancy

So the district seems open to considering other placements. My case manager told me on the DL that she was pretty sure she was going to get this call from me b/c of my comments at Sam's last IEP meeting and she pointed otu Sam's test scores to the director. I want to see the other public program but I also want them to show me what other options might be available. I am supposed to speak to the director directly tomorrow. Cross your fingers for us.

On the sleep front, Sam is doing better. He often wakes up at 5 which isn't exactly the best thing but sometimes I can convince him to lie in bed with me for half an hour or so. On most days I have to get up at that point anyway. Unfortunately, a few days after Sam started sleeping through, Maya started waking again. She started sleeping a bit better this weekend. I really hope their sleep patterns even out before I have to deal with newborn night wakings again.

As for the pregnancy, I told my boss but I asked her to hold off spreading the word until all testing is complete. I am almost at 17 weeks and I don't know how much longer I can stay out of maternity clothes. I am much sicker with this one than the last. For me, it has been worse each time. Since I still have nausea and I still throw up from time to time, I am afraid it may be this way the whole time. The worst is when I take my prenatal vitamins - about 20 minutes later I lose everything in my gut. Fun.

There are moments when I think having another child is a great idea - times like when Maya chases Sam or he chases her and they laugh together. Other times, I think I have made a big mistake. Not that the child is unwanted or anything but that s/he may be more than I can handle. I won't be able to go to a grocery store or do much of anything unless I get serious help or my husband is able to set up a different schedule. I am not sure I can deal with even MORE isolation.

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.

Jammies

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.

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.

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.

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?

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.

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

Siblings and Sandwich

SIBLINGS
One of the nice aspects of Sam being older than Maya is that to her, he has always been this way. When she came into awareness there was this boy who doesn't really talk, who makes funny noises and chews on straws. Because she is only two, she has not yet defined what is normal in her own mind. Perhaps, because of her experience, her ideas will not be too rigid. In Maya's mind, mommy is this way, daddy is that way, and Sam is another way.

Maya long ago passed Sam in her verbal and play skills. At times she tries to engage him in her doll or kitchen play but often she seems to realize that it just won't work. Sam does his own thing. She is aware enough of his quirks that she does a Sam imitation. If you ask her what Sam does she will drop a straw into his straw box (a big plastic tub with slits cut in the top for him to drop things through - it saves our air vents) and waves her arms saying "Oooooooooh".

One nice thing they do "together" from time to time is chase. Maya will tell Sam, "gonna get you" and he will take off running. She will squeal with delight and try to chase him. They can't reverse roles - Sam only knows how to BE chased and tickled, not how to do it to someone else- but Maya doesn't seems to mind.

Every so often Sam will lean over and stroke Maya's cheek or hum right in her face, acknowledging that she is there.

SANDWICH
For some reason, one of my recent obsessions has been getting Sam to eat more appropriate lunch foods. For one thing, as he gets older he will no longer be allowed to have food heated up for him at school. He is allowed in his current classroom but as he moves up, the other building (in a different town) doesn't allow microwaves in the classrooms. I also just don't think it is a good idea for him to eat pasta products allthe time. I decided a few months ago I wanted him to be able to eat a sandwich.

We worked an eating program into Sam's home program this summer and it has gone very well. Prior tot he program, Sam would pinch off tiny pieces of the sandwich rather than take bites. Or he would pull the sandwich apart and lick or pull out the filling but leave the bread. THe program involved started with a full physical prompt along with SD: Take a bite. We faded back to just verbal and gestural prompts as needed as he got better. I also started him on a very easy sandwich - butter and golden syrup (looks like honey). It is easy to bite, the pieces of bread stick together nicely and the flavor is mild. For the past two days, outside of his home program, I have made Sam sandwiches for lunch. He ate them perfectly with only one or two verbal reminders to "take bites". I am very pleased. My hope is that we can add more flavors over the next few months - peanut butter, almond butter etc. Then maybe we can move onto things that are harder to bite like turkey and cheese but that may be asking too much. My hope is to also build in a fruit and vegetable eating program as well. Sam will eat fruit purees (baby food) but rarely will he eat solid fruit.

Medication Failure

I had to take Sam off the Adderall. It was working in many ways. Sam was stimming less - he was making fewer noises, he was paying attention a little better and he wasn't throwing things at the ceiling compulsively. Unfortunately he was spending about 50% of his day crying or having intense tantrums. My mother drove down one day last week to try to give me a chance to go into my classroom for an hour but as soon as I got there I had to turn around and come home because Sam was freaking her out by crying and being aggressive. It stunk. The only upside was that my mom got a chance the worst of his behavior. I think sometimes other people think I am over protective about leaving him. I suppose I am a little bit but only because I know how he can be. I don't want to plan to be half an hour or more away doing something important only to get a call that Sam is scaring the pants off a sitter.

Sam has had these types of tantrums before but never so many at once and for such a long stretch of time. I suspected the Adderall might be to blame. I took him off (after talking to the doc) and he was happy again. Unfortunately, he is back to climbing the walls and throwing things at the ceiling all day long.

So, it seems we can't live with it and we can't live without it. (btw, he has been on behavior plans for the throwing for the past 2 years. Nothing helps. I am just waiting for him to smash a light bulb in his or someone else's face)

Reflection

Even when I vow to be positive, I have a hard time staying that way. I don't think it is just the result of autism; I think I have always found myself more on the side of worry and frustration. I have been thinking a lot about the source of my most recent bout of anger. I suspect it stems from a combination of the "Just-World Hypothesis" and a sense of entitlement.

The just world hypothesis is the idea that bad things happen to bad people and good things happen to good people. It is something we all KNOW is false but it still lurks somewhere in most of our minds. We perpetuate it by saying things like "what goes around comes around" when someone does something mean (because we assume something bad will come back this person) or "You sooo deserve that" when someone gets something good. We don't mean any harm with these comments but they present the idea that if you are a good person you should get good things and if you are a bad person you should get bad things. So when bad things happen to you, is it payback for some earlier wrongs you committed? Probably not. Plenty of bad things happen to good people but this hypothesis lurks and prompts thoughts like "why me?" and "what did I do to deserve this?"

Then there is entitlement. I think many of us who were raised in middle class homes are guilty of this. We assume that if we follow the "rules" and work hard, we will end up better off than our parents. That is how is works in America, isn't it? My parents were immigrants and I saw them move from supporting us on an assistant professor's salary with very little to their names to earning a pretty good middle class income (my father an ivy league researcher and my mother a full time teacher and part time classical singer). It didn't hurt that they came here with Oxford degrees and did not have to face the racial prejudice many immigrants deal with. My point is, I saw it work. They followed the rules - they made the most of their educational opportunities, worked hard, and they "made it". Halfway through my childhood we moved into a 3 bedroom home on a pretty street in a neighborhood with good schools. We took vacations - nothing too crazy - a week at Cape Cod one year, a visit to the rest of the family in England the next. THey put 2 daughters through college - Barnard for me and Brown for my sister. I guess a big part of me assumed that if I followed the same "rules" I would have a similar life.

But really, just because you do well in school and work hard,
Who says you are entitled to a pretty suburban home?
Who says you should get to go on vacation?
Who says you should earn a great salary?
Who says your children should be "typical" and grow up like everyone else?

People with what look like "perfect" lives may have done very little to deserve them or they may have been the most wonderful people in the world. The Just World Hypothesis is false but it creates frustration regardless.

I realize that happiness is a choice. I can attempt to appreciate the small things that go right in a day or I can moan over the life I wish I had. Happiness is a choice but it is one I am just not very good at making. Obviously, I need to work on that.

Ups and Downs

I think the worst is over, for this summer at least. My husband's hip is healing nicely. It won't be back to normal for quite a while and he still has quite a bit of discomfort but the recovery is going better than the first time he had this procedure. He has been able to drive a little this week which is a huge relief. He is trying to go into work a few hours a day which is also a huge relief. As soon as he gets home he has to lie down and elevate the leg and he still can't help out but it is good for him to get out of the house for a while.

Last week was hell week in my mind. Mark was mostly bed-bound and Sam had no ABA or other therapies. Who needs a stairmaster?

Over hell week Sam developed a new obsession - the swing. When he was a baby, he hated swings but once he was moving on his own, he loved them and he has loved them since. Over this past week, his love hit obsessive heights. From the second he was allowed outside each day he began requesting "Wee" (swing). I would push him for a while and then take a break. The second I stopped, "WEE WEE" would begin. After a few minutes break I would concede to push him again. Repeat and repeat. At some point I would let Sam know that I had other things to do (care for 2 year old, cook, clean, wash clothes, wash or feed husband). Complete tantrum. The sort that involve throwing, screaming, pulling, etc. Of course once such behavior begins, I can't give in. He must become quiet and request nicely if he has any hope of getting what he wants. We had some very loud afternoons.

Over the weekend my husband wanted to see if he was steady enough to push the swing. Very nice, don't you think? I thought so, except that he chose the middle of one of Sam's tantrums to give it a try. I think he thought he was helping me out by getting Sam to stop screaming. The thought was nice but by offering to swing Sam in the middle of the tantrum, he was rewarding the tantrum. He told Sam to get ont eh swing and stop crying so he can swing. To me there is a big difference between stopping the tantrum BEFORE getting on the swing and stopping the tantrum BECAUSE he is getting on the swing.

Sam's new medication seems to be ever so slightly quieting some, but not all, of his stims. The vocal stims are less frequent and the straws seem to hold a little less appeal but his attention span remains almost nothing. His sleep is a little better. I had hoped for more as usual but we are pretty much where we always are. It reveals a personality trait I am not particularly proud of - insane jealousy. I am so insanely jealous of people whose autistic children are progressing and learning. I am happy for them as well but in my private moments I am just jealous. What am I doing wrong? - public therapy? private therapy? vitamins? supplements? diets? home program? behavior plans? medication? I have tried it all. And still, except for potty training, Sam has not mastered a single age appropriate skill. He doesn't have a single appropriate play interest - not videos, puzzles, books, trucks, cars - nothing. If you attempt to engage him in any appropriate activity he will scream and run away. He doesn't "get" them. His most recent assessments place him in the <1 percentile on pretty much everything. I can't take him out unless I can physically hold on to him at all times. It. is. not. fair. I know the response to that is "life isn't fair" but really universe, throw us a bone here. I read about families rejoicing because their kids have learned to ride a bike or use a computer or swim or draw a picture. I can't even imagine. Sam can't even focus his eyes on anything long enough to learn to use it. Insane jealousy. People ask me all the time if he likes video games because they have heard autistic kids like video games. I can't even imagine. Sam might enjoy chewing the control or the wires but he would never connect his action with what goes on on a screen.

So there is my confession. I am not proud of my feelings but they are very real. To all of you out there who are seeing your children make great strides - learn to play, to interact, to talk to socialize, to self-care - I am thrilled for you and for the possibilities your children reveal but I am also insanely jealous.

Getting Ready for the Week

We are running around making last minute preparations for this week. Early tomorrow morning I will drag the kids out of bed at about 5:15 (of course they may be up already)and drive my husband to the hospital. He is having a hip resurfacing procedure (similar to a replacement). This is his second procedure - he had the other hip done a couple of years ago. The recovery is rough. He will be able to walk but slowly and with crutches. It will be a while before he has full stability. Once recovered though he should be in better shape than he has been in years. He has been in tremendous pain for many years. Unfortunately, our financial issues have prevented him from being able to take the time to get this done. We aren't exactly in a great position right now but he can either do it now or wait until next summer when I am home again and able to care for him. It will be tough on all of us. Mark is not responsible for much of the child care but after the surgery he will not be able to do any for at least a month, probably longer.

On the sleep front, Sam just had two great nights. It may just be chance but I have a theory. I think the bottle of melatonin we had been using may have been defective. I switched to a new brand (same dose) and we got two nights of great sleep. I guess time will tell on that one. Now if only I could get Maya to sleep. She still wakes like a newborn most nights. I think some of it is behavioral - those months of continuing to nurse when my milk supply was so low led to lots of middle of the night feedings and she never dropped the habit. Also, I think she just gets hungry. There are days when she hardly eats anything and I think she wakes up feeling empty. I am trying to get her to eat more but she is stubborn.

With the medicine, things seem to be going well. The week we just finished was tough but Sam was ill with a fever ( I suspect roseola since he has a blotchy rash today). Since the fever went away, Sam has been very calm. He has been stimming less in the morning and he has been much better in the evenings. I took both kids to Trader Joe's yesterday. Maya rode in the cart and I held onto Sam's hand as we shopped. When I was checking out I wanted to help bag but I was afraid to let go of his hand. I gave it a shot and Sam just stood by the wall and waited for me. Had I tried this a little while ago Sam would have run off and pulled things off shelves. Again, this could just be a fluke and not the meds so time will tell on this one as well.

The next few weeks are going to be very interesting. Hopefully we will all make it through with our sanity.

My Chemical Romance

Hope is the most powerful drug.

Right before each new intervention I ride this wave of hope; it gets me every time. I think to myself, "Maybe this is it! Maybe this time he will start it understand me and to interact with the world in a productive way." THen, hours (or sometimes minutes) before we try whetever diet, supplement, therapy or medication I fall into total despair. I convince myself nothing will change- I am destined to be housebound with an unmanageable child. I will lose my job because no one will be able to watch him for that 5-30 minute gap between when his bus drops him off and I get home because he is too difficult for someone else to watch. Without my job we will all lose out health insurance. We will be hit with medical bills that stretch our already strapped financial situation and we will lose the house. . . you see where my mind goes. Perhaps this is a defense mechanism. It prevents too stark a contrast between reality and my expectations.

I went through this rise and fall of hope right before starting our current plan. After spending Saturday morning fully depressed as I gave Sam his first dose, I am now cautiously hopeful. Adderall seemed to calm Sam down for a few hours in the morning each day so far. His vocal stims were reduced, his hand flapping was down and he was less frantic to get outside and start stimming with his straws and the deck boards (usually he starts yelling "TIDE, TIDE, TIDE" at the top of his lungs about 15 minutes after he gets out of bed). The effects were brief - about 3-4 hours- but noticable. Later in each afternoon we noticed some slight differences as well. Sam seemed just a bit more interactive. We saw lots of deliberate and direct smiles. Also, Sam came in from outside all on his own a few times to ask for "gickle" (chase and tickle). He will ask for that sometimes in the house or if we are all out together but this was Sam leaving his stimmy activity and coming in to tell us something interactive he wanted to do. I hope now that Sam is up to the full (but still lowest) dose the effects might last longer. I know some kids take a half dose at noon to help them through the afternoon. Before we look into that I want to be sure these effects are real and not some placebo effect.

As for sleep, we have not made much progress. Ever since his 3mg of melatonin stopped doing the trick, he has been up most of every other night starting around 2am. He is wired and unable to settle back to sleep. He often crashes again around 5 or 5:30, just in time for Maya to wake up. I try to let him sleep for an hour or two before getting him up for school. The neurologist said we can give a higher dose of Risperdal at night, try clonidine or increase melatonin (or perhaps some combination of those options). I prefer to increase melatonin for now since it is the more natural option. We will see how that works.

Today, Sam is at school and I am very curious to see what feedback I get from his teacher. I hope I have not deluded myself into seeing something that is not there.

**Update** News from school was not good. Sam was aggitated and emotional. Was it the med? Monday blues? We will see.

this weekend

Our first try with medication a few months ago included Trileptal (since his EEG suggested seizures and meds can trigger) and Risperdal (tiny dose). As I do with most interventions, I thought I saw something change but it didn't last. I don't feel those meds helped him. Sam's school disagreed and felt they saw something but I suspect it may just have been a touch of development.

I had two additional therapists come to the house and describe to me what they saw as Sam's biggest obstacles to learning. They both felt his EXTREME inability to focus and need to stim are the issues. We have done years of ABA and OT to address behavioral and sensory needs - we need somethign stronger. I used their feedback when I met with the neurologist and we made a new plan. We are trying Adderall (fraction of a dose for now). This med is for ADD/ADHD. SHe warned me that is may have the opposite effect on Sam since that seems to be the case with many autistic kids. He still takes the Risperdal at night to try to help with sleep issues (still no better - up most of last night). I suspect that we will take that one away soon since I don't think it is doing much. I know many other people who have had good luck with it but I don't see much - either it doesn't work for him or he needs a higher dose.

The medication is not in place of any of the other work we do. Sam will continue in his school and home programs - we just hope the medication helps him learn more effectively.

The first two days were interesting. Sam is starting on half of his prescribed dose. He WAS calmer for a few hours but it didn't last. By 11:30 he was wired again. He was up from 2 am until 5:30am. Same thing today- calm until midday. I am curious to see what happens when he gets the full dose.

So we continue.

The Neurologist

What I like about her:

-She can usually see us within a couple of weeks of our calling.
-She returns calls promptly.
-At each appointment she tries to give Sam as full an exam as he can tolerate.
-She watches him, tries to talk to him and asks me questions about his behavior.
-She doesn't rush us through the appointment.
-She doesn't push medication.
-At each change she asks about my comfort level with the medication.

What I don't like:

-There is often a significant wait for the appointment (I know it is because her style is not to rush people but Sam doesn't do well in waiting rooms).
-She is 1/2 hour away (which I realize is nothing to people in other parts of the country) so with the wait and the drive, an appointment takes up a chunk of the day.
-She doesn't speak to Sam like a therapist so she doesn't get much of a response. She writes A, B, and C on a piece of paper and asks Sam 3 times in rapid succession to show her which one is B. He stares off in the opposite direction and waves his arms. A therapist would write them on separate cards or pieces of paper and say simply "touch B" or "show me B". I know this shows a deficit in his skills but to her it looks like he has NO skills.
-SHE ALWAYS SAYS THE WRONG THING. It is just a lack of tact but it is frustrating. At one appointment a few months back, as we were leaving, she looked down at my daughter and said "she doesn't say much". The suggestion was there. Maybe you have another one. In truth, Maya talks non-stop in most situations. The exception is a doctor's office. This past appointment she told me Sam reminded me of another patient she has. I said "oh yeah?" expecting some kind of advice about something that helped the other child. Instead she continued to tell me this other child is 13, can't talk and won't even get off the bus to go to school. His parents have a lot of trouble with him. Really? Thanks. Way to give me something to look forward to.

We have a new plan. I will post about it once we get started. Cross your fingers, pray, send positive energy, and/or think positive thoughts on our behalf.

Rough Nights

Sam has had some rough nights over the past couple of weeks. I think he has built up a tolerance to the melatonin b/c he is waking at around 3am. He refuses to stay in his bed and he works himself up into a frenzy - jumping, running, stomping, flapping, and laughing. He crashes at around noon and sleeps a bit. I, of course, have consumed so much coffee by that point I can't nap myself.

I don't think medication is working for Sam. I always think I see something at the beginning of each new intervention but I think it is just because I am looking so hard I find things to hold on to. I am taking Sam back to the neurologist this week to see what the next step should be. I assume we will wean him off (shouldn't take long since he is on such low doses). I would like to try other options but she may tell me there are none. I know WANTING to medicate my child may sound funny but you have to realize that he cannot function in the world. His behaviors are not manageable. We have done countless hours of behavioral interventions with very little to show. He is still mostly non-verbal, pretty hyperactive and extremely impulisive/compulsive. I had a couple of therapists come look at him last week and they both agreed that there is more intellect in there than we can see but his stims and microsecond attention span make simply functioning impossible. They both felt that if there was any way to reduce his level of distraction, he would be able to do much more. I am not delusional - I don't think I have a little Einstein hiding in there but I do think he is capable of more. That is why I want to try more meds. My biggest fear is that he will still be like this when he is five feet or six feet tall. How could I possibly manage him? People tell me not to look too far into the future because things may change but his progress is sooooooooo slow and he is soooo tall that I don't think my fears are baseless.

I hope the neurologist has some options for us.

New Shoes

I don't know what is going on with Sam and his feet lately but whatever it is has made it necessary for me to by him lace up high top sneakers. A couple of weeks ago Sam began to obsess about wearing socks in the house. That was no big deal. He also began to compulsively remove his socks and shoes when was was outside. The problem? half of our backyard is mulch and he began to get splinters in his feet (which he refused to let be removed - and he can FIGHT). I tried a behavioral approach. He had to go and pick up his shoes and socks and go inside each time he took them off and he couldn't go back out until both socks and shoes (or sandals) were back on his feet. Literally a minute later they would be off again. Now you should know that we spend A LOT of time outside when the weather is nice. It is the only way I can stay sane. Sam is a disaster in the house. I found myself making Sam put shoes bakc on upwards of fifty times a day. Sometimes I would be busy with Maya and not catch it right away. He continued to get splinters. The frustrating (sad? puzzling?) thing was that he didn't like walking in bare feet. He would make a face and look like it was uncomfortable but the compulsion was too strong to resist. It is the same thing with his need to drop straws through the deck boards - he is happy to do it most of the time but every so often he gets upset and seems angry that he can't pull himself away from this self - stimulatory activity.

So today I changed strategy. I bought high top lace up sneakers (Target's Converse One Star Sneakers) and Sam can't get them off. If somehow he develops the attention span and the fine motor skills to untie double knotted high top sneakers then I will have to come up with a new plan. But I think we are safe for a while.

Little Caretaker

Maya, age 1, feeding her baby

Maya, age 2, "changing" her baby's diaper

My 2 year old daughter Maya has shown a strong maternal instinct since she could move. As soon as she had the ability to manuveur her arms and legs, she would feed spoon and bottle feed her dolls and stuffed animals. She now loves to "change" their diapers as well. She gets out her mini changing pad and lies each one down. Then she gets a baby wipe to wipe them and she tells me they have "tiny poo".

recently she has transferred some of this caretaking behavior to Sam. It both warms my heart and makes me sad. If he is crying, she gets a tissue and wipes his face saying, "Sam crying". She will hold the tissue to his nose and say, "blow". A couple of days ago I caught her in the bathroom with Sam trying to wipe him (Ew?). SHe could only reach his back so she was rubbing the toilet paper up and down his back. I finished the job for her and when he got up she said, "good job Sam". When Sam come in she sits down next to him and tries to help pull his shoes off.

It is foolish to think children don't notice difference. Maya has clearly noticed that Sam is different. SHe recognizes that at 5 he needs much more help on things than she does at 2. She also know his behvaior is different. Sometimes she imitates his stims - dropping a straw and flapping her arms while saying, "oooooooh". The difference of course is that she is fully aware that this is an imitation. Her pleasure from this behavior is just that she is copying her brother - there is no other neurological reward. SHe notices the differences but they just don't matter to her - yet.

Even though Maya is only 2, it makes me happy to know that she loves him and "gets" him. I expect that there will be a period of time when she resents him or, perhaps, is embarrassed by him. I won't fault her for that. He is a tough brother to have. I feel a little sad for her. Ultimately though, I hope the caretaker in her will overcome any bad feelings. I think this is why I really want her to have another sibling. She shouldn't have to be a caretaker alone.

IEP

I had Sam's IEP meeting last week. It went pretty well. I got something I wanted - Sam's parent training hours (his home program) will be switched to ABA hours so that hopefully Sam can generalize better. We are still in "disput" over whether Sam be with a 1-1 aide next year or in a 2-1 set-up (2 kids with 1 aide). I am 100% sure that Sam requires a 1-1 aide in order to make ANY progress but the program automatically switched them at primary level. We (the teacher) have to take "data" to demonstrate Sam needs to remain in a 1-1 situation.

Feeling better

Funny how I only seem to want to post when I am in a bad mood. I am feeling better today so I am going to try to post somethign more positive. Sam's poop issues are still driving me bananas. I don't know what is going on. I think it may be something Freud could comment on since I think there is some control/sensation issue involved. I am also looking at his diet. He has been eating more fruit and I wonder if things are moving more quickly than he is used to? I had to throw away the little trampoline we had in the family room last night. I want paint too detailed a picture for you but imaging play doh going through the spaghetti maker? Yeah. gross.

I finished grading a huge number of research papers so that weight is off my shoulders.

I am gearing up for Sam's IEP meeting. I just got his re-eval reports and basically he is functioning in the <1 percentile. That is pretty much as low as you can score. His scores have not increased in two years of this school program (although he has made some gains, they are not measurable). I am going to write a detailed letter tonight saying that I expect them to increase his services since clearly the program with which he has been provided is not the most "appropriate" for his level of functioning.

Maya is talking up a storm and adding new words every day. It is very cute to hear her in her crib yell out "Hear I come!".

Both kids are enjoying the nice weather. We have worked hard to set up the backyard like a playgrounf. Today will be fun for them.

People want to hear (yes, another pity party)

People want to hear:

that you are making the best of it

that you have faith

that you'll never give up

that Autism is a gift

that you wouldn't change your child for anything

that this experience is making you stronger

They don't seem to want to hear:

that your barely verbal five year old who seemd to be potty trained has started to regress. That he pooped in his underwear while stimming on the deck yesterday then took off his pants and ran through it a few times before I could stop him.

that later that same night he had more poop to make on the toilet (after starting in his night time pull-up)but the second I looked away he reached down to feel it and then wiped his dirty hands all over his clean pjs, his arms and his face

that last summer I worked my ass off getting him to string 3-4 very apraxic words together "I want ___________" and now the ability has completely disappeared.

that I literally want to poke my eardrums out sometimes because his vocal stims are so loud, so constant and so annoying.


These types of things either end conversations or result in an attempt at understanding (like: my two year old got his hands in his diaper once). I really don't know what kind of response I want. Maybe there is nothing anyone can say and maybe I shouldn't bother mentioning these things.


Here is the truth:

I am sometimes unable to make the best of it because sometimes even "the best of it" sucks

Faith? still thinking about that one

no, I will never give up but I have to balance that with accepting reality

Autism is not a gift. My son is a gift but it is delusional to say that something that takes away his ability to function, care for himself and communicate is a gift. Have I learned a lot? Sure. but I would trade it all for one conversation with my son.

If there was a magic pill that would take away Sam's Autism I would get it.

While this experience may have made me "stronger" in some ways, it has made me weaker, sadder, more lonely, and more terrified in others. I am not sure the trade off is worth it.


It has been a crappy week in more ways than one.

Yard Sales

I love yard sales. I am slowly becoming one those crazy ladies who makes a quick zip around a corner if I see a sign on a telephone pole. I get even more excited if I can park right next to the sale so that I don't have to bring both kids out of the car. I take a quick look around to see if the sellers have toddler clothes or toys and then I make selections or leave. I have found some incredible deals. Take last weekend - Mark was home on a Saturday (very rare) so I went to the post offic ewith just Maya in tow. We drove by one yard sale on the way home which was a no go. THe second stop was a hit. The family had about ten big plastic bins outside in the driveway. They were closed because it was raining off and on. I stepped out of the car and asked if they had children's clothes. They said yes. I asked if they had stuff for a toddler girl and they said "That's all we have here!" Their price? 2 for $1. A steal right?Especiallly considering most of the stuff was from The Children's Place. As I began to gather an armful of stuff, they offered me a clear garbage bag and said fill it and pay $5 bag. I filled two. I got two bags full of 2T and 3T clothes for Maya for $9 (I was short a dollar bill and as I counted change to reach the 10 they said 9 was fine). I think I may have actually done a little jig as I carried the bags to the car. I counted the items up when I got home - 55 items for $9. Why such a deal? I think they were worried that with the rain they might not have many people show up. Also, the wife works with autistic children and as we talked while I looked, out mutual interest came up.


Now just to let you know how obsessed I can get, I went back a little later to see what was left. I got another 22 item for $11. Maya has all the 2T jeans, shirts, skirts, sweatshirts etc she could
possibly want.


Some of my favorites:



Today I got a Parent's Magazine brand wooden trike and a toy vacuum cleaner for $12.

Sam's frustration

Sam has developed a new frustration. He loves to play with plastic drinking straws. They keep him busy and out of trouble so I buy them in bulk! He has a box with slits in the tops into which he can drop the straws and then retrieve them. He does the same thing outside on the deck - he drops the straws through the spaces between the boards of the deck and then goes under to get them (there is room for him to go under relatively comfortably). Lately, when he drop them through the boards of the deck he starts whining and crying when they fall. He cries the whole time he walks to go get them. Due to the way he chews them, some of the straws don't fall but many of them do. I try to explain that if he drop them they are likely to fall. Of course he doesn't know what I am saying but I try. He does it again and again and again and again. . . Part of me wonders if perhaps part of his brain is tired of this stim/perseveration but another part won't let him stop.

On the adoption front, everything is on hold. After getting the letter about training, rushing around trying to arrange a babysitter and finding one, I got a call saying they have too many families interested in that particular program right now so we have to wait. If we do everything now it will might expire before we get a referral/placement. We have to talk again and decide if this is still the way we want to go. We know we want a third child but which route?

5

Sam is 5. Actually he has been 5 since April 26th but I haven't had time to write about it. I sent cupcakes to school and picked up an ice cream cake on my way home from work. I hoped that all the sugar might signal something in his brain and make him realize that it was a special day. He allowed me to put the paper crown his school sent home on his head for a photo at the dinner table. Then he willingly let his sister steal it because he hates hats. He seemed happy.

Medication update - we continue on this path for now. No miracles yet but we have noticed a slightly increase in his abilty to understand and follow directions. What I had really hoped for - a decrease in the CONSTANT stimming- has not happened. I am eagerly avaiting the results of Ohio State Medical's study on mecamylamine. I don't know why I have a gut feeling about that one; I am far from qualified.

Other stuff - we are considering adoption (from foster care). Family members: I know we haven't discussed this with you so please don't be upset with us if this is the first you hear of it. We just don't want to have to justify our decision right now. We are aware we have a lot on our plate and we are aware that this is not an easy road to travel. We have been speaking with families who have been through it and we are hearing about the good and the bad. We know we want a third child, we know we have always been interested in adoption, and we know a lot about getting services for special needs. We know that is we do this we will need help )like a sitter once a week so I can run errands) We feel we have a particular set of skills now that would make us good at parenting a child who is at high risk for various forms of special needs. We are in the exploration phase. I attended an initial orientation with another family I know. We registered our interest with Children's Aid and we are having an initial safety inspection this week when we will get more information about the state's requirements. We may learn that we cannot meet their reqirements. Or they may say we need really expensive work on our home that we can't do right now. We will see. Since , at the moment, we are only open to infant or toddler adoption, they may say that my needing to work full time as a teacher disqualifies us. We also may not be able to complete the required 27 hours of training this May (anyone want to watch my kids monday and wednesday nights????). SO there are many unknowns but we would like to figure out if this is a possibility for us.

If you would like to speak to me about this please do but leave out phrases like "taking on another problem" "asking for trouble". I will completely tune you out once I hear those things. As the parent of a special needs child and as a high school teacher, I can tell you that I have see just as many "problems" in families with biological children as with adopted.

A little More Positive

I spoke at Barnard College a couple of days ago - it was a developmental psychology class (one I took when I went there). I was just there to give an overview of Autism from a paretn's perspective. I had a great and I met some great students. One of the things I touched on at the end of the presentation is the endless tug of war between grief and acceptance when you have a special needs child. In the moments of grief, it can feel all-consuming. THe life you planned work, worked for, felt you deserved is gone. You rage against this new life. It is not like getting stuck in Holland when you planned on going to Italy (I don't care for that essay). It is more like never getting to leave the airplane. All the other passengers get off and head to their destination but you are stuck and feeling more clostrophobic by the minute.

On the other hand, there are moments of acceptance. TImes when you can relish your child's efforts and accomplishments. The highs are higher because of the lows. I remember that Sam potty trained nearly a year ago today. He had just turned 4. I couldn't believe it was real. i was just entering panic mode because he was about to outgrow size 6 diapers. But he did it and it stuck. I try to remind myself of moments like that on the days that I feel tugged toarads grief.