Home School/New Special Ed School/Gratefulness

Last night was the first local LEAH meeting (Loving Education At Home), and it was nice to see everyone and get encouraged for the upcoming year.  I've been going through our curriculum, working to get the first few weeks planned out.  We use Math U See , All About Reading, All About Spelling, which are all multi-sensory programs that use concrete methods to teach abstract concepts. We also use My Father's World Exploring Countries and Cultures, and Explode the Code. Explode the Code follows the same sequence as All About Reading, but doesn't teach each step explicitly; so we use it to reinforce the concepts we've covered.   It also includes all the books we need.   I love My Father's World because it plans out everything for me and schedules when everything should be done. It gives spaces for Math, Spelling, and Reading, which are the subjects that need to be supplemented.  I tried in first grade working without a curriculum and just doing unit studies, but it really was a disaster.  So, now as we approach 4th grade, we're just sticking with what works.  We started out with a strict schedule, a uniform, a room decorated like a classroom, and a very structured environment.  I wanted to give DD a private education experience because I couldn't afford to give it to her, but I could give it to her myself.  It was a complete fiasco.  My daughter craves freedom, and over the years I've tailored our home school to suit her.  That's the beauty of home school.  When math comes easy, we speed through the mastery program.  When reading and writing are slow, we are pokey through those subjects and approach the other academic areas using oral methods so that the intellect is the same but the process is different.  We start a little later in the morning, or not until the afternoon, sometimes wear pajamas, sometimes get dressed, sometimes do school at home on the couch, in the dining room, in the kitchen, on the porch, or away from home in a park or someplace like Panera.  She can get up and walk around while she does her work.  She can attach her work to the fridge with magnets and work upside down.  Sometimes I put on music and sometimes it's quiet.  Whatever works is what we do.  We also belong to a co-op that offers art, music, and gym, which is great because those are my weak spots.  So, now that we're starting year 5, I'm confident with what will work, what not to worry about, and that I'm doing what I'm supposed to do.

DS is also starting a new school in September.  Last year was horrible, so I'm truly hoping that this year will be much better.  It's a tiny school with very small classes.  There is a regular gym and a sensory gym full fo swings and other stuff to stimulate the senses.  There's a brand new playground.  There are toys in the classrooms.  There is a dining area with  a stoves and sinks and a washer and dryer for activities of daily living.  The people there seem to be very nice.  It's a not for profit organization for kids with lots of needs.  DS will also be getting physical therapy, occupational therapy, speech therapy, feeding therapy, and behavioral therapy.  I'm just praying that he is where he is meant to be.  We all had a good feeling when we went to visit the school.  It's in God's hands.

So, today DS is feeling better, so we went out to the park to get some sunshine and fresh air.  I feel better, and the kids are happier.

Today's gratefulness challenge is to think of three things I'm grateful for that are hole, whole, and half.  Hmmmm.  I have to think about this one.  A hole...we have groundhog holes in the yard, wasp nest holes, and we have holes in the walls of our home from DS banging his head...I'm not really grateful for any of those...I have no idea.  I'm going to have to really think about this one...I'll get back.

Behavioral Therapy

We started behavioral therapy a couple of months ago. I wish we had been able to get behavioral therapy a lot sooner. I know that some behavioral therapy is done at school, but I sure could have used the help at home.

Disciplining a child with autism is extremely difficult for several reasons. First, it can be difficult to tell the difference between bad behavior and autism...what can't they help doing, and what can they help doing? Second, many autistic kids just don't understand many discipline methods. This is very frustrating.

We have always tried to expect good behavior from our son, and have always been consistent. I always give a tremendous amount of positive reinforcement, follow through on threats for punishments, and I always try to make sure that the punishment fits the crime. However, this doesn't always help because many times my son just doesn't seem to "get it".

Also, he can be aggressive toward himself and me. He bangs his head when he is angry, frustrated, or afraid. Trying to get him to do something else is extremely difficult. This is the second thing the therapist is trying to address.

Other things we're working on are sitting at the dinner table, potty training, and transitions.
The therapist uses something called ABA therapy. That stands for Applied Behavioral Analysis. We've actually been using many aspects of ABA without evening knowing it.

Basically, ABA breaks down tasks into minutia and the child receives a tremendous amount of positive reinforcement in order to get them to display desired behaviors. The hard part is knowing what tiny steps to break the activity into, and focusing only on positive reinforcement because these kids DON'T get traditional discipline. The negative reinforcement is withholding the positive reinforcement. This is extremely challenging and takes an immense amount of patience and energy. It's absolutely exhausting. By the end of the day I'm often feeling very burnt out, and this takes a lot of attention away from my daughter.

Steps we're taking are using picture schedules as well as using lots of pictures for communication, giving stickers for taking medications, and giving positive reinforcement like saying good job or giving a high five every few seconds that my son is seated at the dinner table (and getting up dozens of times to put him back into his seat during dinner...right now we hate dinner time). Potty training involves getting to watch Chitty Chitty Bang Bang for 20 minutes if he spends as much as one second sitting on the potty, and we've limited the choices of what to do instead of bang his head down to just one thing that he can do...stomp his feet.

ABA combined with his new medication has been somewhat effective, but anything in autism takes a lot of time...often years. Some things never happen. However, we have to have high expectations in order for my son to achieve his highest potential. So, that's what we're doing.

Lastly, my nephews gave my son a drum set from the video game Rock Band. It's quiet, and my son loves it. We've tried all sorts of other drums or other things to get him to bang on because he needs to bang constantly. He ruined so much furniture and broke lamps and hit others constantly, and it drove us crazy. Now he has an appropriate outlet for his drumming, and everyone is happy.

Patience, time, consistency, repetition, reinforcement. ..difficult but worth it.

Where Has the Time Gone?

Playing horseshoes at the family picnic

Playing volleyball with the cousins at the family picnic

Rides at the community day fair

Nature hike at the harvest festival

Cool mushroom we found on our nature hike

Oh my! It's been a month since my last post. It's been a busy month with kindergarten starting for my son and all of us passing around a cold. It's my turn right now. Yuck. At least my son didn't get horrifically ill this time. Usually when he gets a cold, he winds up with asthma and on antibiotics for MONTHS. He still has a runny nose and coughs once in awhile, but that's it. At least we dodged one bullet. :)

Since my last post, we went to my girl friend's wedding, which was wonderful. They provided daycare at the reception, and so my husband and I were able to relax, eat, spend time together, and talk to all our friends at our table. It was wonderful. After the wedding, they had a bonfire and fireworks. My daughter said the fireworks were "cool". She's too much.

Then kindergarten started. I'm not fond of the bus driver. She's unfriendly and drives too fast. Other than that, my son is doing extremely well. He's talking more, he has told me twice about things he's done in school, and his teacher says he's doing very well in the class. We're still working on toilet training. We went through a lot of confusion with where to send my son's medical forms, immunization forms, and therapy prescriptions because he's going to a school outside of our district, so the district and the school both needed the forms...we eventually worked everything out.

We started behavioral therapy with my son. The therapist has given us a lot of great tools that have been very helpful. I'll have to write a separate post just about that.

Our babysitter is back from being home in NJ over the summer. We had another babysitter who was very good, but we just connected with her more. As a matter of fact, she stopped over yesterday with her boyfriend to drop off little pumpkins and apples for us and the kids. She's just a really nice girl, and we love her.

She still comes occasionally during the day to hang out with the kids so I can catch up on some cleaning, and she's coming over Wednesday nights so that my husband and I can attend a marriage workshop at our church. Although we're doing well, we want to keep it that way. :) Especially with how difficult it is to be parents of an autistic child and how easy it is to get so wrapped up in parenting and get so tired that you forget your relationship with one another.

We also love our church. That was a huge decision, and I suppose that's another post too. We had gone on a Tres Dias weekend, and since then, we've really had God as the center of our lives more than ever before, and it's made such a difference. That's another post too.

My son just started a new medication. It's similar to the one he's been on, but this one is extended release so it's not supposed to make him as tired. So far, it's only been two days, but he doesn't seem too tired and he seems a little more focused. Time will tell.

My husband's parents were up for a visit, and we got to see them a couple of times. We had the annual family picnic, which was a lot of fun, and then we spent another day over my sister in law's house just hanging out and eating way too much. My WONDERFUL nephews gave my son one of their drum sets from Rock Band, which my son has been using every single day...it's so nice to have something for him to drum on that's not the table, the lamps, my head...

I also got to go out to lunch again with my cousin, Carole to the CIA. That's another post too. We're going out again this week for lunch with my Mom and her Dad.

Sheesh, I have a lot of catching up to do.

I really should update the blog a lot more often. It's so nice to go back and read about things. It's like a journal. There are even services where they'll print out your blog as a book.

Well, I'll post more later, but at least that's a little bit of what we've been up to. :)

General Updates

We started working with a behavioral therapist who has provided us with picture schedules that we've been using, and this has been very helpful with transitions. My son likes to know what's going on during the day. My daughter likes them too. We have a strip on the wall by his bed where I put the pictures, and I also have flip cards so that I can bring the pictures along wherever we go so that I can prepare him for transitions while we're out too.

The therapist has also been working on getting my son to sit through a meal, and he's doing very well. He still gets up, but the length of time that he's sitting is getting longer and longer.

We're also working on getting my son to keep his seatbelt on, and he's been doing well with this too.

The head banging continues, despite all efforts to curtail it. Sigh.

Our new neighbors moved in, and they seem nice. They're also a family of four with a son and daughter who are 14 and 11...same age difference as mine. The mother is an aid in the local school system, and she works with an autistic boy. My husband's coworker calls this a "God-incidence". I like that term.

Kindergarten starts on September 8th. I like the program my son is in, and we've been to visit the outside of the school. There's a big playset that looks like a fire engine on the playground, and this was a big hit with my son. The school is a regular public school in a nearby school district, but my son will be in a self-contained class with other autistic children. There will be seven students, a teacher, two assistant teachers, and a speech therapist in the room. The program is very similar to the preschool program he just finished, and I think he will do well.

He still has diarrhea, and the doctors still can't seem to figure out why.

My daughter is talking up a storm, and her pronunciation is getting clearer. She's just too darned cute.

I'm sure I'll have more time to write when my son goes back to school. He takes up a lot of time...but it's a blessing that I have so much time to spend with my kids.

Kindergarten Placement Update

Well, after much prayer and being a pain in the neck, we finally have my son placed in a kindergarten class for September that I'm happy with!
The coordinator of special education is filing a variance to open up a 7th spot JUST FOR MY SON in one of the classes for autistic children in a district school So, the ratio will be seven students, one teacher, two teacher's aides, and a speech therapist. That's a smaller ratio than he has now, as he's in a similar situation but with 8 children. I visited the class, and the children are similar to my son in level of functioning. The class is similar to the class he is in now, but with academics that closely follow the regular academics of the school. The class is in a local grammar school, so there will be plenty of interaction with "typically developing" (that's the PC term) children. There will also be lots of opportunities for mainstreaming. AND he will be eligible for any after school activities offered including instrument lessons, chorus, sports, or whatever he may be interested in. He will also have the opportunity to be mainstreamed into academic classes as well, should he excel in a particular area. So, I'm very happy. Also, the school is only 20 minutes away, which I'm more comfortable with. It's in a nice, quiet little area, and the playground has a big monster truck for the kids to climb on. My son is very excited about this.
Today was his last day of school, and I was happy to be able to let his teacher know where he'll be going.
We still have to work on potty training, which has been difficult because he's had diarrhea for six weeks now, and none of the doctors or specialists seem to be able to figure out why. This is bad for toilet training because he doesn't make a lot of urine because most of his fluids come out in the bowel movements. This means there aren't a lot of opportunities for him to succeed in making pee pee on the potty, and this means he doesn't have success to motivate him. This is not a good thing, but I explained the situation to the special ed coordinator, and this is not going to break the deal for my son being in a district class. So, we'll just keep trying. He has a medical condition, and he can't help it, so I'm glad they wont' hold it against him. If they did, I would have insisted they get an aide for him. I guess I've been enough of a pain in the neck for them. :)

Kindergarten Placement

Well, we're in the midst of looking for the best placement for my son in kindergarten. He was initially placed in a program within an institution that treats the most severe cases, with many violent children with a ratio of 6:3. I didn't feel it was appropriate for him.
Then we looked into a district school with a class specifically for autistic children also with a ratio of 6:3, but there were no spaces.
I told the district that they'd have to find some other options for my son, and if they don't have any openings, then I want him to be placed into a higher ratio class with an aide.
Then we looked into another institution that is for multiply handicapped children with a ratio of 12:5. He fit in a bit better here, I wouldn't have to worry about him being injured, but the school is 45 minutes away. Also, the children are much more severely handicapped than my son. So, I'm not completely thrilled with this placement.
Then today, I got a phone call saying that they were willing to create an opening for my son in a district school in one of the classes for autistic children. I THINK that this would be ideal, as he would be in a regular school, close to home, with more opportunities to integrate with normal, ah, er, typically developing children. It would then be easier to move on to mainstreaming and inclusion.
So, we'll see.

Behavioral Techniques

In addition to medication, we are using a number of behavioral techniques to help my son adjust to changes in his environment.

My son is a very visual learner, so we have pictures taped up all over our apartment. We use pictures for the calendar, we use pictures for schedules, we use pictures for communication, and we use pictures to help my son express and handle his emotions. These techniques are somewhat effective and can help to relieve my son's stress, which helps to alleviate everyone's stress.

Since my son's speech still sounds like babbling, he can be very difficult to understand. We use pictures for communication so that he can point to a picture to help explain what he's trying to say. He also uses some sign language, and is also smart enough to sing, or make pantomime to show us what he's trying to tell us.

Picture schedules help him to anticipate what is coming next so that he is more relaxed when his environment changes. Unfortunately, last minute changes to the schedule or complete abandonment of the schedule due to something like my daughter teething or my son having a difficult day full of tantrums still cause difficulty.

The newest thing we're doing is using picture boards to help decrease my son's head banging. This has been the least effective, but we still keep trying since learning disabled kids can take a very long time to learn a new skill. The pictures are supposed to help him to identify why he is hitting his head and provide him with an alternative behavior.

So, these are just some of the behavioral techniques we use with my son. We're all learning together. My son responds extremely well to positive reinforcement and loves receiving as well as giving affection, so that makes everything better.

Preschool

Part of what I do at home is teach preschool for my daughter and my son when he's home. I don't do it every day, but I do it at least a couple of days per week, which is probably enough for a 19 month old. I always do it on Saturdays when both kids are home and my husband is working all day. It passes a couple of hours, and I'm sure it's good for them. They like it, anyway. Some days my son has a bad day and we never make it all the way through because I have to deal with too many tantrums, but that's all part of having a child with autism.

I taught special ed preschool during the summer between high school and college, so I learned a lot during that time. So, we do the calendar, circle time (story time and singing), the alphabet and counting, and arts and crafts, coloring, or a worksheet.

I also learned a lot while my son was receiving early intervention at home. So, I've learned a little occupational therapy, a little speech therapy, a little special education, a little feeding therapy, and a little physical therapy. So, I try to do whatever I can with the kids. I'm hoping this helps reinforce what my son is learning in school, and my daughter is learning like a sponge.

Birthday Cake Toy

I was shopping for a first birthday gift, and I came across this adorable birthday cake toy. We're still working on getting my son to blow. We work on this using bubbles, whistles, harmonicas, and real candles. He has something called dyspraxia (like apraxia) where he has trouble carrying out movements that take a lot of planning or need to be performed on demand. It affects him most in his mouth and makes it difficult for him to eat and talk, but he has trouble with any complicated movements and balance. For example, he can't ride a tricycle or stand on one foot.

Anyway, this toy has five little candle lights that light up when you press the star button, and counts the candles and plays, "Happy Birthday", and then says, "Blow out the candles!" And when you blow on the candles, the lights go out and you hear clapping and cheering. There's a sensor in the middle of the candles that detects the blowing to get the candles to go out. However, after about five seconds, the candles still go out and you still hear clapping and cheering, so even though my son can't actually blow out the candles yet, he doesn't get frustrated. He played with this cake for HOURS yesterday. He brought it to the supermarket and played with it the entire time. My daughter loves this toy too. She figured out how to do everything on her own, and she can blow out the candles like a pro already.

So, if you're looking for a great gift for a young child or know a kid who needs practice blowing, this is a great toy. It's just adorable and a lot of fun to play with. It's also small... just the right size for little hands.

By the way, this isn't a paid post; I just really like this toy!

Melatonin!

I don't know what took me so long to try melatonin for my son. Everyone I've spoken to with an autistic child swears on it for helping to get their kids to sleep.

Usually our evenings are consumed with going into my son's bedroom dozens of times over the course of several hours to see why he's frustrated and banging his head and trying to calm him down...even involving a trip to the emergency room. Usually he doesn't fall asleep until 11 or 12. Tonight he was asleep before 9. No tantrums. No head banging. Last night he fell asleep around 9:30. He woke up without any grogginess. In fact, he was happier this morning than I've seen him in ages. It was even relatively easy to get his jacket on this morning, which is usually a huge fight.

I'm always leery about using over the counter meds, but my son is closely followed by many specialists, so everyone will be looking out for any possible negative side effects. The most common ones are hormonal fluctuations, but his hormones are constantly monitored, so we'll be keeping an eye on that.

All of the scholarly articles I've read about treating children on the autism spectrum who suffer from sleep difficulties with melatonin report nothing but positive outcomes. In fact, beyond just the children falling asleep earlier, sleeping better, and sleeping longer, studies have noted a decrease in obsessive compulsive behaviors and happier parents. :) They report that negative side effects are commonly associated with very high doses and that the doses recommended (under 10 mg) appear benign.

So, after feeling so bad about medicating our son, he's doing pretty well. He can control himself better, he's happier, he's getting more sleep, my daughter is no longer in danger, I'm not covered in bruises, and we can enjoy our son again.

CPSE-CSE Meeting

CPSE stands for the Committee for Preschool Special Education, and CSE stands for the Committee for Special Education, which encompasses the next 12-16 years of school. These meetings are held annually to discuss student progress, and next steps. They can be intimidating and emotional.

The meeting was headed by the assistant director of pupil personnel services. She was joined by a special education teacher from the school district, a regular education teacher from the school district, my son's teacher, me, a school psychologist, and another person from the preschool, whose position I can not remember.

There were three parts to the meeting. The first part was the annual CPSE meeting, which would discuss whether or not my son would be eligible for the Summer Program. The second part was the preschool summary meeting, which would evaluate how much progress my son has made during his two years in preschool. The third part was the CSE meeting, which would discuss my son's classification, and where he would be placed now that he was entering the public school system.

The CPSE meeting reviewed my son's progress over the past year, and that he has started to eat some fruit, drink from a straw, take off his coat, and talk, although most of his speech still sounds like babbling. Because of his severe delays and his tendency to regress when he's absent from school, it was decided that he was indeed eligible for the Summer program. That was good.

Then part two of the meeting evaluated how he had progressed throughout his preschool "career". It was a little like the Newlywed Game. The teacher and I had to pick a number from 1-7 to describe how well my son was able to do something, 1 being not at all, 3 being an emerging skill, and 7 being a mastered skill. Then the meeting leader would tell us what my son's score was during his initial evaluation before beginning preschool. All of the scores remained exactly the same except for self help, since he can finally tell me if he's hungry and request a bottle, some water, or some fruit. This was the only area where there was improvement, where my son went from a 1 to a 4. This was disconcerting, upsetting, and sad. Then it was on to part three.

The third part of the meeting was the CSE meeting. The first order of business was to discuss how my son would be classified. Because he is on the autism spectrum, and also has dyspraxia, growth hormone deficiency, and other muscular and neurological issues, as well as very little ability for self-care, he has been classified as a child with multiple disabilities. Because he is so very delayed and needs so much assistance to do absolutely anything, he can not go to a regular school, not even a special education class in a regular school. The best ratio in a school is 15:1, and this is not good enough for my son. So, it was suggested that he be placed in a BOCES (Board of Continuing Education Services) school program for children on the autism spectrum. The ratio there is 6:1:2...six students, one teacher, and 2 assistants. He will be able to continue to receive speech therapy, feeding therapy, occupational therapy, and physical therapy in addition to behavioral and psychological services. His case will continue to be reviewed annually, and depending upon his progress he will either be moved to a regular school, or he may remain in this program until he graduates high school, which he has until he is 21 to do. Should he remain in this program, he will not be required to take state exams or regents, and will graduate with an IEP diploma. IEP is Individualized Education Plan, and is a course of action used to evaluate the requirements and progress of special education students. An IEP diploma is not the same as a regular diploma or even a GED. It's basically a certificate of completion only. The program does provide counselling and job training and placement, however, so that he would be able to work in whatever capacity he was able.

He will be in a school with other children like himself, and will have every opportunity to succeed at the best of his capabilities.

The school is 1/2 hour away, and he would be on a special bus with a matron, and would receive door to door service. Because he's little, he will also be getting a car seat. These are also very good things.

It was upsetting and gratifying at the same time. I know what his issues and problems are. I couldn't imagine him going to a regular school and riding the bus with all the other "normal" kids who could be very mean, and without a bus matron to supervise him. I couldn't imagine him going to a regular public school, even with a special education class, and then mixed in with other classes. I didn't know about the BOCES school, and I was so happy to hear of a place that I think would be just perfect for him...a place where he would be with other kids just like himself, getting all the services, help, and supervision he needs. I was also a little sad, because it's always difficult to have to focus on your child's problems, and to have a qualitative record of his lack of progress. There's always a bit of a period for me when I mourn my son's struggles, and imagine the future, and think how are we going to get through all this?

Then I see his smiling face, and remember to take everything one day at a time, one hug at a time, and know that love and faith will get us all through.

Tent!

I bought a tent for my son several years ago because it's supposed to be a great developmental toy. Now he and my daughter love playing in it together...and around it...well, just running in and out and around the tent is great fun. The best part is to see the hair-dos created by the static electricity that builds up running through the material. Apparently, there's just nothing better than a tent.

Annual Reports/ CPSE/My Silly Kids

CPSE stands for the committee for preschool special education. Each year they are required to meet with the parents using the annual report prepared by the teachers and therapists to discuss services the child is eligible for during the following year. The first meeting I attended was during the transition from early intervention, where my son received therapy at home, to preschool, where all of his services would be provided in an educational institution. Now we're already working on the transition to kindergarten.
Reading the annual report is always difficult. By necessity, it focuses on the negative because all of the problem areas (or as Avis Rent a Car always used to call them...areas of opportunity) must be identified and strategies must be suggested.
Progress is painfully slow with my son. In two years he progressed from being 12-18 months developmentally to being 18-24 months developmentally. Everything is difficult for him.
However, he's still my little boy, and while I was feeling all upset about his report, he came over to me, leaned his head on me and said, "Ahhh Mama." That made my day.
I just love him so much. I always tell him "I don't know what to do with you" followed by, "I guess I'll just have to kiss you." He thinks that's funny.
He has such a wonderful sense of humor and loves to laugh. He and my daughter are always cracking each other up until they are absolutely hysterical. Today we went out to eat at Applebees with a gift certificate my husband received for his birthday, and the people in the booth next to us were laughing. So, my son became hysterical just enjoying laughing along with them. This of course made my daughter laugh too.
My daughter is picking up words left and right, and also has an incredible sense of humor. We're laughing here all the time. Everything is funny. Today when we asked her where we ate, she said, "Applebees". She loved the big apple on the sign and exclaimed, "Apple! Apple!" She's a pure joy.
Someone walking by our table in the restaurant said we had such well behaved children. They really were very good. We were grateful.

EKG Results/ Tenex

Sorry I was gone so long. We've been sharing a horrid stomach virus all week.

Well, I called the doctor to get my son's EKG results, and she said they showed he was a little tachycardic. That means his heart rate was too fast. I told her he was screaming his lungs out, and she said that then the EKG was normal. So, we decided to start the Tenex.

Tenex is actually a blood pressure medication, but it is also used to treat children with ADHD and autism to decrease aggression, increase attention span, and help them fall asleep at night. The side effects are dry mouth, dizziness, and drowsiness.

Just filling the prescription was a little bit difficult because it only comes in pill form, so I was trying to discuss with several different pharmacists how to administer it to my son since he will not take a pill and he doesn't eat any food so crushing it into applesauce isn't an option. They had no suggestions. Ugh. So I asked if I could get a bottle of flavored syrup so I could mix each crushed half pill into a little syrup and give it to him with a syringe. However, for reasons that have escaped me, they can not dispense the liquid without a medication dissolved into it, and they can't dissolve pills into it, and Tenex does not come in liquid form. So I told them to fill the prescription, and I said I'd figure something out. I bought a pill splitter and a pill crusher, and then went to the grocery store for inspiration. I thought about syrups. Sundae toppings seemed too thick to use with a syringe, and then I thought about grenadine. Grenadine is pomegranate syrup used to make Shirley Temple drinks, and it's delicious and has a low viscosity or thickness. So, I bought that.

I went home, split the pill, put half of the teeny tiny pill into the pill crusher, and the pill was really too small for the crusher because it never became a powder. Then I poured a little bit of grenadine into a medicine cup, which somehow splashed and stained the counter and the floor. I poured in the crushed pill, but some of it stuck inside the crusher. So, I used a knife to try to scrape out the medicine and mix it in with the liquid. Then I sucked it into a syringe, but some of the pill got left behind. So I crushed the rest of the pill with the end of the knife, put some liquid back, and sucked it back into the syringe. Then I went to give it to my son and told him it was yummy. He still spit some of it out. So, I don't know exactly how much he got.

I tasted it, and it didn't taste bitter at all. He just doesn't like anything. It was so frustrating.

Still, I hoped he had gotten enough of the medication in him, and was looking forward to him falling asleep easily and then having an easier day today. However, he was up banging his head just as late as usual, and had just as much of a tough time today with aggression and frustration.

I thought maybe if I give it to him a little earlier it would have more time to work before he went to bed, so I gave it to him late this afternoon. I didn't even bother with the pill crusher. I just smooshed it in the medicine cup with the tip of a knife. I was extra careful with the syrup, and despite my best efforts, he still managed to spit out some of the liquid. Arghhhh. I didn't notice any difference at all. I don't know if it takes time for Tenex to build up, if the dose is too low, or if he's spitting out too much, or if it's just not working.

I was so disappointed. I wasn't expecting a miracle, but I was hoping for a day that was at least a little easier than usual, and I didn't get that. Oh well.

We have a followup with the neurologist in six weeks, so I'll discuss it more then. I believe Tenex also comes in patch form, so that may be another option for us to try.

We'll see.

Living with PDD-NOS in the Family

I found out a friend of mine from high school has a child with PDD-NOS (that's pervasive developmental delay, not otherwise specified, which is on the autism spectrum). Her son is 12. I was looking at pictures of him on her Facebook page, and saw my son older. Her son looks like mine and wears glasses like mine. She gave me her phone number and I will be calling her soon to talk about her experiences with medications and therapy and advocacy. It will be nice to talk to someone who's been there.

Yesterday my son head butted my 17 month old daughter hard enough to knock her down and leave a bruise on her head. I hope that medication helps. He still needs to get his EKG first because the medication, Tenex, is a high blood pressure medication that's used "off label" for autistic and ADHD kids to help them calm down, sleep, and decrease aggression. The therapists and teachers at school are dead set against it, by I have to protect my daughter too.

Just getting ready in the morning is difficult for my son. He usually doesn't want to get up (although this morning he woke up singing) and bangs his head. He doesn't like to have his diaper changed, so he bangs his head. He didn't want to go to school today, so he banged his head. He wouldn't let me put on his shoes, he insists on wearing his boots. So, I gave in. He won't wear his spring jacket, he insists on wearing his winter coat, but he wouldn't even let me put that on. His not wanting a coat on has been going on for a week or so. I've tried singing, coaxing, having him try to put it on himself, choosing which coat to wear, and asking if he wants it on at the top of the stairs or the bottom of the stairs, but I always wind up having to wrestle and force his coat on. If we go out, he only wants to go in one of our cars. If we want to take the other car, he has a huge tantrum. If we're on the way home and have to stop someplace on the way, he gets upset because we're supposed to be going home. Everything is difficult. Everything takes tremendous patience.

I was talking to a friend yesterday who works with my husband, and she told me how tired he looks. He works three jobs so that I can stay home with the kids. He makes a lot more money per hour on the weekends than I could ever make, and that's why he works and I stay home. We are each other's only source of respite, and we're completely drained. I have a mother's helper come over for two hours a week so I can catch up on cleaning, but my husband and I never have time for ourselves. We've only been out alone twice in the past three years, and that was just for dinner. We're both tired. He works all the time, so I'm home alone all the time. I felt so guilty that he has to work so hard and he's tired. If my son could go to daycare, or if there were someone who could watch him and my daughter during the day when they are sick or, when I have to go to therapy meetings, or when they have to go to specialist appointments, then I could work. I'm very grateful for how my husband works so hard every day, and then he comes home and plays with the kids so I can cook dinner. He's a wonderful husband and father, and I am absolutely blessed to have him in my life.

Aries - The Ram

I'm not a believer in astrology, but I think it's ironic that my son is an Aries (the ram), and he head butts almost constantly. As my son's head banging has increased in both frequency and intensity, we've been investigating solutions to keep him from hurting himself and us.

We've been working with the neurologist and are looking into trying medication, and we are also working with the entire team at his school to explore behavioral modification techniques. I personally think it's going to take a combination of both, but of course the neuro thinks the meds will work and the school team is dead set against them.

The behavioral modification techniques take time, and because my son bangs his head very hard, bangs his head into glass, and bangs his head against other people, I'm not going to give it a whole lot of time out of safety concerns. I think I'll give them a month and see how it goes. Then I think I'll try the medication if we need to.

The medication the neuro prescribed is Tenex, which is a blood pressure medication. In kids with autism or ADHD, it decreases aggression, increases focus and attention, and has a calming effect. Unfortunately, it can make the kids very tired. It also can dangerously decrease blood pressure, and before it can be administered, my son has to get an EKG. So, that's a little scary. Also, it only comes in pill form, so that will be a challenge to deliver as well.

It's difficult to be judged by the school team who are clearly anti-meds, but I tried to get my point across that I don't want him to put his head through a window, and that he's already injured me, and I'm afraid he'll hurt my daughter. I don't think they get it.

I will do what I've done ever since I've had children; I will go with my gut.

I Want to Talk to My Son

There's an extremely powerful scene in the move "Mr. Holland's Opus" where a mother, Iris Holland is talking about learning sign language because she is unable to communicate with her deaf son, Cole. She is discussing sign language classes with her husband Glenn Holland, while Cole is trying to tell her what he wants. Iris can't understand Cole's request, and he grows increasingly frustrated to the point of tears. She holds him and rocks him while he cries, and begins to cry herself explaining to Glenn Holland that she wants to tell their Cole that she is his mother and that she loves him. In desperation she cries, "I don't know what he wants, I don't understand what he's trying to say. Don't you get it? You go to school every day with all these children who are normal. I can't talk to my son! I don't know what he wants or what he thinks or what he feels. I can't tell him that I love him, I can't tell him who I am. I want to talk to my son! I don't care what it costs, I don't care what the stupid doctor says is right or wrong. I WANT TO TALK TO MY SON!"

(At the end of the movie, the father sings "Beautiful Boy" by John Lennon to his son in sign language. It's another beautiful and moving scene. I sing this to my son all the time too, and he just loves it. )

This was always very moving even before I had a son, and now that I have a son with whom I have great difficulty communicating, even more so.

I was reading another blog site written by another mother with an autistic child called "A Parent's Autism Experiences" . She also had a failed attempt at using sign language with her son, but decided to try one more time. Here is a link to her post. She bought a set of DVD's, and, well, this is what she wrote:

"We tried [teaching our son sign language] again about six months ago, and what a miracle. Our little clam has opened up in ways that we never expected. He has gone from not understanding or at least not being able to communicate what he understands to having some semblance of normal communication with his parents and siblings.

We made the plunge and spent over $300 and got the “Signing Time” DVD collection. Now I’m not selling them and I could care less if you run out and buy them or not, but they have literally opened up a whole new world for us.

We have two other children, one nine and one four. All of the children love the videos and as parents we are learning the signs as well. Now our little boy can identify all of the foods he likes, as well as a variety of other activities and objects. It is so much easier to be able to say it is bed time than to have to show him the bed etc. "

I found a set on E-Bay for $200 (it's listed at $750 on the Signing Time website...whoa). I wonder if my son would do as well trying sign again. He's been starting to use more signs including the sign for "mother" and "moon", and "drink", and he's doing them correctly. He always used to only approximate signs, and sometimes still does. However, maybe he's ready. He also will sit long enough to watch a video, so now might be the right time. My daughter, I'm sure, who is 15 months old could certainly benefit too. My son's speech still sounds like babbling, and it is incredibly frustrating to try to understand what he's trying to say most of the time. He is throwing more and more tantrums, and hurts himself. He screams, "Momma, help!" But he can't tell me what he needs help with and he screams and cries and smashes his head into the wall or floor or furniture to the point where he has contusions on his head. It's horrible.

I love my son so much. I wish I could see a little bit more into his world and I think it would mean the world to him to be able to communicate with more than a very few words. So, I think I'd like to give it a try. It's expensive, but what price can you put on talking to your son?

I want my son to be able to talk to me, and I want to talk to my son.

Breakthrough!

Well, we've finally had a breakthrough. I hope it lasts. As you may know if you read my blog, my son has an obsession with hitting me in the head and saying, "boing". I've been trying to get him to be gentle for months and months. FINALLY, yesterday he did it. And if he starts up with the boing thing, I tell him, "Remember, gentle", and he strokes my hair instead of hitting me in the head. Awesome! I am so thrilled I'd do a cartwheel if I could do one...I've never been able to do one, though, except for the time I accidentally did one while in the process of falling down the stairs and breaking my collar bone when I was 7...don't try that at home, by the way.
Anyway, I am so happy and so pleased and so proud of my son. Patience, consistency, patience, patience, and more patience. Go Boo!

Electronic Experiments, Take Two

My husband bought another electronic experiment set for our son. This one records and plays back sound, and it can also be programmed to play a sound when it detects rain or light or sound or some other disturbance. It's pretty cool. Right now it's set up to modulate the recorded voice so that it sounds either too high or too low, depending upon which way you turn the modulator. It's time consuming, but fun. Our son was only slightly interested in it tonight. He's still very hyper. Really, if he's not strapped into his Special Tomato Height Right Chair, he isn't able to focus on much, and he wasn't tonight.

I could have used this electronic experiment lab before I took my hearing aids class, which was basically an electronics class. There were many classes in audiology I never expected to take like physics and electronics, but they were interesting and fun. Thank goodness my husband was a missile technician in the Navy and had electronics books and was able to help me with my hearing aids class. Without him, I would have been lost.

Without him, I'd be lost even when I'm not taking an electronics class. :)

Mr. Bump

I went to my first support group at my son's school today, and I got some really great news and some really great suggestions.

The psychologist at his school said that he does not display any aggressive behavior at school at all. This leads him to believe that this behavior will stop. He suggested that I redirect my son when he tries to play "boing" with my head (he hits me in the head repeatedly and says, "boing!"), hits, slaps, kicks, etc. I told him that I have plum run out of ideas of things to try to redirect him. Another lady in the group said that when she had a similar problem with her grandson, they began to use Mr. Bump. Mr. Bump goes everywhere. Whenever her grandson feels the need for any physical aggression, he takes it out on Mr. Bump.
I tried to buy Mr. Bump today at Walmart, but he wasn't there. So, I'm going to try again tomorrow at Target.

I hope, I hope, I hope, that this works. Wish me luck.