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.