Too Cute

I just love my kids. The day before yesterday, my daughter sat in a chair facing my husband, my son, and myself and had a detailed, animated conversation. The only words I understood were yes and no, but she certainly had a lot to say. We were hysterical. She loved the audience. We treasure every single utterance and every single no after having to wait five years to hear our son speak.

Then she decided it was kissy time. So, she came over, climbed up on the couch and said, "Daddy's turn!" and kissed my husband..."Mommy's turn!" and kissed me...and then did the same thing with my son...over and over. We were all laughing, and my son was giving wonderful kisses back to his sister. It was great.

Yesterday my little girl turned 2. She woke up very early, and we sang Happy Birthday to her. She came downstairs to put big brother on the bus, and then we snuggled and she fell back to sleep. I got a lot of housework done, and then when she woke up, we went to Weight Watchers, she played on the ice cream truck toy in the mall, and then we went out to lunch with a good friend of mine at my daughter's favorite restaurant...Chez McDonald's. By the time we got home, it was time to get big brother off the bus and they played outside for awhile until my son threw a large stick at my face. Then I brought them upstairs and my son had a horrible tantrum that went on and on resulting in more wall dents and several bumps on his head. Horrible. The only way I could stop him was by physically holding him on the couch so he couldn't hurt himself anymore. Not nice. He eventually calmed down, thank goodness, because my daughter needed attention too and I have to ignore her when we're in crisis mode. Not good. Then they played nicely and I made dinner for them. Then the babysitter came over and my husband and I went out for our marriage workshop at our church. I felt a little bad going out on my daughter's birthday, but there are only 8 classes, and it's important that we keep our marriage strong. So, we're going to have cake tonight with the behavioral therapist. :) Then we're having a family party on Sunday. I'm going to be making brunch food. I can make almost everything ahead, so it'll be easy to cook and I won't have to worry about missing church. We love going to church.

So, that's what we're up to. :)

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. :)

Dutchess County Fair

Well, it is sad, but this is my first entry about someplace we actually went this summer. It's been a quiet summer focused on school, therapy, taking care of my son, and church.

I was really hoping that the fair this year would be more fun than last, and it was. My son is still fixated on very few things. He spent almost the entire day playing in a little bin of dried soybeans and small toys. We had to wrestle him out to see the old-time machines which he likes because they spin. We had to force him to sit through a high diving act, and he wasn't even very interested in the construction vehicles they had out for the kids to climb on. My daughter was interested in more things, so my husband and I split up. My daughter and I went to the little zoo, the little museum, and to see the animals and the butterflies. Mostly we stayed by that bin. I truly hope my son's interests will expand a bit and the tantrums let up so that we can have more fun.

I think I'm ready for summer to be over. I usually like summer, but this year has been a bust. It's been the hottest summer ever, my son's been sick the entire time so we couldn't go in the pool or much of anywhere else, my husband works long hours most days of the week so I don't see him very often, and there's just no time or money to go anywhere.

Still, we're grateful for what we have. We have our health (for the most part), a comfortable home, two cars, plenty to eat, clothes to wear, and good friends and family. What more do we need, really?

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.

When My Son Doesn't Get His Way...

When my son doesn't get his way, he bangs his head. Unlike normal kids, autistic kids will bang their heads until they hurt themselves. Despite this, he still doesn't get his way. I'm hoping that he'll eventually learn that banging his head does not serve any purpose. Unfortunately, we're on hole number two in the wall from the head banging.

We have been very blessed to have very understanding downstairs neighbors, and very kind maintenance workers who are willing to come and fix the holes and who understand that autistic children do these things and are not surprised or judgemental.

Thank you God.

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.

A Book to Share at School

I made a book for my son to bring to school that told of his experience. He had me read it about a hundred times this morning while we were waiting for the bus, and by then he had it memorized and he was reciting it while looking at the pictures while he sat on the bus. He is talking MUCH, MUCH more, but he is still hard to understand, and his vocabulary is still limited. So, sending in a book is a good way for him to share what happened to him, and he likes seeing his experience in a book too.



DS Met Too Many Yellow Jackets



DS was playing by a pine tree.



All of a sudden, DS felt a poke. It was a yellow jacket.



Yellow jackets are not like bees. They make nests in the ground and get very angry if someone comes near. A bee can only sting once, but a yellow jacket is a wasp that can sting many times. That is what happened to DS.



Soon, many more yellow jackets were stinging DS. Daddy came and brushed them all off. He got angry right back at those wasps.



DS got a lot of boo boos. They hurt a lot. Mommy called 9-1-1. Three trucks came just for DS-an ambulance, a police monster truck, and a fire truck.



DS got a shot. He didn't like it, but it made him feel much better. Mommy snuggled with DS, he slept a lot, and by the next day, his boo boos didn't hurt anymore.



An exterminator came and got rid of that wasp nest. Now DS can play by the pine tree again.



The End.

My Son's Ordeal...

My son was finally able to go back to school today because he got clearance from the doctor that he doesn't have anything contagious. So, the next step, since he still has diarrhea, is to go to the GI doctor. That's a tummy doctor. After he got home from school today, he took a nap, and then we went to get his new glasses. He looks so handsome in them! My husband got home just a few minutes after we did, so he stayed outside with the kids so they could play, and I went upstairs to cook dinner. While slicing onions and boiling pasta, I heard a horrible screaming coming from the stairwell, so I ran over to see what had happened. My son was covered in wasp stings.
My son had been playing near a pine tree, and apparently, there was a yellow jacket nest there, and they attacked him. As he was being stung, he then got attacked by my husband who was smacking all the wasps off and killing them as they stung our son. He was stung by well over a dozen insects, and each one stung him numerous times. He was covered with welts and screaming in pain. I got out all the stingers that were left over from the wasps my husband killed while they were stinging our son. Then I took him right to the car to drive him to the hospital.
He got very quiet, so I called 911 and pulled over into a nearby parking lot. The fire department, police department, and EMS came. My poor son was in too much pain and too upset to be at all excited about the trucks. The EMS persons observed him for a few minutes, and since they didn't see any allergic reaction, they said that we could either choose to have him looked at in the ER or take him to the local pediatric ER. So, we chose to take him to the local pediatric ER to forgo the hospital experience since there was no immediate danger.

On the way there, he was screaming for us to turn the pain off. It was horrible and pathetic. We stopped off at home on the way to the doctor and I gave him some Tylenol with codeine that we had left over from a surgery he had last year. It did nothing for his pain. When we got to the doctor's office, they gave him a shot of morphine, some benadryl, and a prescription for percocet. He's resting comfortably now. We have the baby monitor in his room so we will be able to hear him if he wakes up.

Poor thing can't catch a break. I'm just glad he's going to be okay.

It Took Awhile, But...

I finally got my son to look under his pillow, and he was very happy to see Sir Topham Hatt there. When my husband got home from work, I asked my son to tell his Daddy who gave him Sir Topham Hatt, and he pointed to his mouth and said tooth. I guess he couldn't remember the word fairy, but he got the idea! It was very cute to see. He took Sir Topham Hatt with him everywhere today, and then took him to bed. How cute.

My Son Lost His First Tooth Today!

This is a little Sir Topham Hatt in his car...The Tooth Fairy confided in me that this was what she'd be leaving under my son's pillow tonight...

My son lost his first tooth today. My husband was the one who noticed that the tooth was loose. He said that it looked like my son's tooth was growing in sideways. I said I never noticed, and when I looked, it looked perfectly straight...hmmm...strange. So I thought, "Maybe it's loose!" When I was brushing his teeth, I was very gentle, and I did notice it moving. Then today I noticed that he had blood on his cheek. I was looking and looking for a cut, but I couldn't find anything. Then, at the same time, my husband and I said, "Tooth!" Sure enough, there was a space where one of his bottom front teeth used to be.

I spoke to him about his tooth being loose because I'm sure it hurt, and I wasn't sure if it might have frightened him. I told him that a grown-up tooth was growing in and pushing the baby tooth out, and that it was a happy thing and meant that he was growing into a big boy. We haven't found the tooth. My son probably swallowed it. We think it probably came out while he was eating an apple. I checked the apple and the floor around where he was eating the apple, but no tooth. The tooth fairy will be visiting nonetheless. I don't think he would understand money, so we requested that the tooth fairy bring a small toy. We told our son to look under his pillow in the morning to see if the tooth fairy brought him a present for losing his tooth. I'm really not sure exactly how much he understands, but I am sure that he will understand Sir Topham Hatt. :)

Tornado?

No, it wasn't a tornado, but it sure seemed like it at the time. The same storm did spawn a tornado in Connecticut. This damage is just from a down burst with wind speeds around 100 miles per hour. I was just turning into our apartment complex, and the sky suddenly darkened dramatically. The wind hit the car like a bullet. I pulled into the parking lot by the local deli right in the middle away from any trees. I was proud of myself for keeping a clear head. Huge trees fell all around us as the wind roared and the rain flew sideways all around the car. My daughter was in the car with me, and she was screaming and reaching out to be held. I stroked her leg instead, knowing that she would be safer in the car seat. Of course the safest place would have been in a basement somewhere, or laying flat in a ditch, but it came on so fast that there wasn't time to do anything, and thankfully, it wasn't a tornado. It blew through in just a couple of minutes and then the sun came out. As I pulled out of the parking lot and drove down the driveway toward the apartment, I had to drive over the grass as trees had fallen across the road and onto other people's cars. Huge trees were pulled out by the roots and snapped in half. Some trees were sheared at the top. I was grateful that nobody was hurt. Everyone who saw the storm was sure it was a tornado, because that's what it looked and felt like, but according to the National Weather Service, there was no rotation. It was sure scary though. I'm grateful to God for keeping us safe. The down burst occurred at 1:30 pm when my son was safely in school, my husband was safely at work. Thank God!

Where has the time gone?

Oh, it's been so long since I've posted. So much has been going on. I helped my Mom move from our old home to her new apartment, I went on a Tres Dias weekend (http://www.tresdias.org/), my son has become aggressive again, my pocketbook is gone for the second time in a month, and my husband has had shingles. I really need to sit down and post some of the interesting stuff that's been going on. I haven't been home, or I've been taking care of sick folks, or I've been trying to keep my son from injuring my daughter. Busy, busy, busy with little time to sit at the computer.
We did manage to fit in a couple of fun outings which I will also post about. I tried to post some pictures, but the website just isn't letting me. :(
You'll hear more from me soon. :)

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.

Teething

Ugh. I haven't been sleeping much, my house isn't very clean, and I'm tired. My daughter is teething. Poor thing is getting a lot of teeth at once and to top it all off, she has allergies. So, she's pretty miserable. It's 11 pm, and I should be in bed, but I get in the mode where I can't relax because I'm just waiting for her to wake up again. So, that's what I've been up to the past few days...feeling like a zombie. :) I'm having flashbacks to when she was a newborn...all the way up to 13 months old when we finally used the Ferber method to get her to sleep.

Well, I'm going to try to get some sleep. At least my son is sleeping with his Melatonin. I stole one, so hopefully, that will help me.

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!

"I Know Exactly What You're Going Through"

Rosie, one of Thomas the Tank Engine's friends
People are always telling me that they know exactly what I'm going through, and I think, they have no idea. Unless they have a disabled kid or an autistic kid, they have no idea.

Yesterday afternoon was really rough. What got me through is that I had some decompression time beforehand. Also, I now know that my son will not always be so difficult whereas he had been difficult all the time to the point where I was completely burnt out before we started the meds.

Yesterday I totally forgot about my son's neurologist appointment even though it was on my computer desktop. Somehow, I hit snooze and it didn't come back up, and I just totally forgot about it. My son came home from school, and I took off his shoes and jacket and he put his favorite toy, Rosie, one of Thomas the Tank Engine's friends, down in a location unknown to me.

Then I looked at the computer and saw that he had to be at the neurologist in a half hour. Doh!

So, I had to get his shoes and jacket back on, which he was not prepared for since he was in stay home mode. That means, he kept running away from me, slamming his head into the wall, collapsing on the floor, screaming, thrashing around, and doing everything he could to make sure that it was impossible for me to get his arm through even one sleeve. Having lots of experience with this, I was able to wrangle on his jacket. I swear sometimes I should be dressed in chaps and boots for this task. Then the shoes. He kept throwing his shoes and kicking. It took a very long time for me to get his shoes on. During all this, I also have to be aware of what my 19 month old daughter is up to as well so that she doesn't get into trouble while I'm distracted or get hit with a shoe.

Then we couldn't find Rosie. I didn't know where my son had put her. Later we found her on the kitchen counter, but I didn't think to look there. So, I had to try to get him out of the house without Rosie. He was screaming and crying pathetically for "Woe dee" and worked himself up into hysterics. But we had to go, and I tried to calm him the best I could with a quiet voice and tried to get him to take another toy, but to no avail. He was fixated, and I couldn't redirect him.

Then I had to get him down the stairs. Because he was upset, his sister was upset too. They both started flopping and screaming and crying and it was like trying to lead two large strands of spaghetti down three flights of stairs. But, I did it.

Then I had to get them into the car. My son was constantly pulling to run back inside to find Rosie, so I had to hold both of their hands in one hand so that I could use the key to unlock the car door because they both wanted to get away from me. Then I had to keep my daughter trapped between my legs inside the car door while I got my son into his booster seat, making sure that he didn't kick her with his flailing feet as he was still devastated at the absence of Rosie. He kept trying to pull the seat belt off while I was trying to get it on, and my daughter was trying to wiggle away. But I did it.

Then I got my daughter into her seat and we drove to the neurologist's office with the two of them screaming inconsolably. Then we got to the office and I had to get them out of the car and into the building. My daughter had calmed down by this point, but not my son. His tantrums can go on for hours.

I had to carry my five year old son and my daughter to get them inside and to the elevator. My son didn't want to go on the elevator, so I had to try to keep him in a semi-upright position as he tried to fling himself away from me. The elevator finally came, after what seemed like forever, and we went up to the third floor. We got off the elevator, and my son collapsed on the floor kicking and screaming because he's afraid of the height. The building is designed in such a way that there is a central atrium, and the offices are around the perimeter with glass railings so that you can see down into the atrium. He wouldn't move and tried to kick me away every time I got near. I was finally able to get him to walk to the office, screaming and pulling. We got into the office, and he was still upset and asking for Rosie.

Thankfully, we got called in almost right away, and then we had to deal with screaming, kicking, and collapsing because they wanted him to stand on the scale and use a stethoscope on him. In the meantime, he was trying to pull apart the blinds, play with the computer, pull all the wires on the computer, and play with everything on and around the desk. I dealt with this while still having to watch my 19 month old as well.

After the appointment, we had to get out of the office, and he kept hooking his feet on the door frame so I couldn't get him out. I eventually did and had to carry him to the elevator thrashing around again.

So, is this REALLY what folks with normal kids go through? Do you REALLY know what it's like to do that all day long every day? Really?

So, things have been much better since my son is on meds. This used to be my life every day with my son head banging my face and my daughter. Now it's only sometimes, and he never hits me or my daughter. It's still exhausting. I pray for strength and patience every single day.

So if I'm ever late, or I ever look like I just went through a war, now you know why.

Another Great Morning!

This morning my son was awake before I went in to wake him up, but he was laying in bed quietly sucking on his fingers and his sleeve (so cute). I went in to get him ready for school and gave him some tickles (gentle stroking, not to make him laugh) to wake him up a little more and got him dressed without a single act of fighting...no screaming, kicking, trying to run away...nothing. He didn't want to brush his teeth right away, but after I asked him a couple of times, he stood nicely for me so I could brush his teeth wash his face and brush his hair. He complained slightly about putting on his jacket, but I just said, "It's okay," and he put it on without any further trouble. Then he picked which choo choos he wanted to bring on the school bus, and went very nicely downstairs to wait for the bus. He sat on the stairs and sang and played with his trains and I sang one of his favorite songs to him...I love you a bushel and a peck. Then he said, "I love you" and hugged me! It was unbelievable. He was excited when the bus came and I could just keep up with him when he made a run for it. It was great. That's two days in a row now of mornings that never happened before. Maybe one or two things would go smoothly, but not everything...and not two days in a row. His teachers and the bus driver report that he seems happier and he's been singing a lot. I'm so happy. I hope he continues to feel good on the Melatonin.

My Daughter's M's

A drawing with embedded m's done just today by my very talented daughter.

Recently, we were sitting at a restaurant table waiting for our food. My daughter and son had their kiddie menus and crayons and were being very well behaved coloring and drawing. My daughter started saying, "Emmmmm. Emmmmm." I thought it was very cute. Then I looked at her paper and saw little m's all over it. She just loves to draw m's. I've been practicing writing her name with her, and she's learned the M. They're not the most perfect m's, but they are definitely m's, she is consciously making m's while she is saying, "emmmm", and she's just 18 months old, so I think she's really cool, and I am pround of her m's. :)

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.

Wonderful Mother's Day!

Well, I had a wonderful Mother's Day! I got the most beautiful cards from my husband and children, and then we all went to spend the day with my Mom. We went to mass and had lunch and then went window blind shopping for my Mom's new apartment.

I got chauffeured back and forth by my husband, and he changed all the poopy diapers, served my dinner, picked up the toys, emptied the dishwasher, got the kids ready for bed, and rubbed my feet. I don't think it gets any better than that!

Thank you Sweetheart for a wonderful day!

Never Enough Patience

I pray continually for more patience, but it doesn't always come. I have a very bad trait in that I get very grumpy and impatient when I'm tired. Very often my son won't fall asleep until after midnight, and sometimes I'm up until 2 because I don't start housework until after he goes to sleep because I have to constantly go into his room because he bangs his head. Or, I get stressed out from all the tantrums, and I can't fall asleep. So, I've been getting about four hours of sleep per night over the last few nights. Tonight I vowed to go to bed early, but I hate to go to sleep before my son in case he needs me.

Also, I'm feeling horribly guilty. He always seems to want a toy I can't find, and until I find it (or my husband does), he will scream and smash his head into the wall. I got angry because I couldn't find the toy he wanted, and told him he just had to go to sleep. It was nearly 10 pm, and I was tired and just needed the day to end. Both kids have basically stopped napping, I haven't been sleeping, and I yelled at my poor son for doing something he can't help, and that of course got him more upset. My wonderful husband found the toy my son wanted, and my son quieted down. I felt horrible.

I went into his room and held him and rocked him and cried feeling like a horrible mother and thinking in my head that I was so sorry he didn't get a better Mommy. I told him how sorry I was that I lost my patience and I tucked him in and rubbed him.

My son being the sweetheart that he is forgave me without a moment's hesitation and just enjoyed being rocked and rubbed.

Why can't I just be more patient? Why is it so hard?

If you've ever watched 19 Kids and Counting, the mother, Michelle Duggar, had a baby at 25 weeks gestation, and has been at the hospital with the baby ever since. She didn't sleep for weeks when things were touch and go, and still with all the stress and lack of sleep, she remained cheerful. She never yells. I don't know how she does it.

Guess What? I Love You!

My son surprised me today. I never know exactly how much information he understands or retains. Today, I observed some evidence that some of what I say is definitely understood. This, I think, should give hope to anyone who is waiting for their child to speak.

I must tell my kids a thousand times a day how much I love them. I have lots of different ways I like to do it. One way is I start out with, "Guess what?" Then I say, "I love you!" Today I said, "Guess what?" And my son answered, "I love you!"

I can't tell you how happy this made me. I even got a kiss. There's nothing like hearing your child say, "I love you"...especially when they've been essentially non-verbal for five years.

For all those people who have told me that I'd be sorry when my kids started talking because they'd never shut up, I am so happy to hear every word, and I hope they never stop.

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.

Busy Week!

Drumming! My daughter running around at my son's kiddie party with her "Minnie"... she calls all animals, stuffed and real, "Minnies" after our cat Minnie. LOL

My son coming out of a jumping toy at his party.

My daughter coming out of the same toy.

Well, since my son's birthday, we've all had colds. We were feeling particularly miserable Thursday and Friday, but by the weekend, we were feeling a little bit better and still did the things we were planning for my son's birthday weekend.

My son LOVES drums. Our baby sitter's boyfriend plays the drums. We're very blessed to have found a babysitter who loves our kids! She told her boyfriend about my son, and he offered to bring his drum over. So, I thought that in return, I'd cook dinner. I told my next door neighbor about it, and she said she'd love to come over with her husband and daughter. So, it turned into a regular little party.

My baby sitter's boyfriend and my son played duets, and my son followed his rhythm. My daughter and next door neighbor's daughter also played the drum.

I made a lasagna for dinner with salad and garlic bread, and my next door neighbor made Emeril's Chocolate Cream Pie which was TO DIE FOR. Here is the recipe.

It was a great night and everyone had a wonderful time.

Sunday we went to church as usual (well, lately anyway we started going again before Easter), and the children were HORRIBLE...the worst they've ever been. We were even locked up in the back of the church behind closed doors, but when they opened the doors to let people go up for communion, my son booked up the center aisle right up onto the altar. So, I had to chase him down and retrieve him. Well, it's a children's mass, and by now everyone knows my son because he's impossible to miss seeing and hearing, so I doubt anyone was terribly surprised.

Then in the afternoon we had a little kiddie party with some boys from his class at a local place that's filled with inflatables to jump on and climb on and slide down...the perfect place for a bunch of hyperactive boys. Everyone had a great time there too. My son refuses to take off the participation bracelet they gave him when we went in. LOL

It was a great weekend!

My Boo is Five Years Old Today

The fire engine cake I planned to make for my son for his birthday.

My failed attempt at the fire engine cake...the poor thing disintegrated and collapsed. :(

My son turned five years old today, and we had a great day. My husband and I woke him up by singing happy birthday, and he loved it. I baked cupcakes for his friends in school, and he was so excited by them! There have been so many times when he didn't pay any attention to gifts or birthdays or Christmas or any other holiday, so the fact that he was excited by the cupcakes is a huge deal! He even counted the M&M's on the cupcakes...there were three on each one. He was adorable. Then when he came home from school, there were a couple of cupcakes left over, and he wanted one!!! So, he and his sister had cupcakes for snack. He didn't eat it, but he did lick the frosting, which is also a big deal!

I had planned on making him a fire engine cake, and found what I thought would be an easy one to make by Betty Crocker. However, it was not easy, and my cake disintegrated into crumbs until it collapsed. So, I called my husband and asked him to pick up a cake on the way home, and we had ice cream cake instead.

My son wasn't feeling very well because he has a cold, and in fact, we all have colds. My husband feels worse than any of us, poor guy. So, we didn't have the neighbors over for cake like we planned, but I did bring them over a few pieces.

My son loves having happy birthday sung to him, and he tried really hard to blow out his candles. He even opened up his birthday card and present...which he also never does. So, we were so happy! He loved listening to his happy birthday song message from my mother, and Then my brother called to wish him a happy birthday, and he said, "Hello Uncle R..." and thank you. Wow. It was a great night. :) What a great birthday for my Boo.

Happy Birthday sweet boy. Mommy loves you.

A Serious Case of the Giggles

With all the toys and other items of amusement my kids have, who would have thought that this shirt hanging on a hanger on the coat closet would be what the kids played with most tonight.

They had a serious case of the giggles. My son was making my daughter laugh until she couldn't breathe by spinning this shirt around the doorknob. She would count to three, and he'd give it a whirl, and oh boy, was that funny. If it spun off the knob and fell on the floor, well, that was just too much. My husband videotaped most of it. The video is all shaky because he was laughing so hard.

It's moments like this I remember when things get difficult. :)

Walk Softly and Carry a Big Stick

We went hiking yesterday. It was a little windy and cool, but it was still a beautiful day. My son did not want to go. He wanted to stay home. So I forced him to go. I had to nearly drag him down the trail...after about five minutes, he was just fine, and then it was nearly impossible to get him to leave afterwards. As any typical boy, he was always on the lookout for a good stick to carry, and so long as he didn't swing them around, I let him. He found a pretty large branch that he dragged behind him like a rake. His little sister, always looking up to her big brother, also found herself a suitable stick to carry. They had a lot of fun, and how cute!!!!!

Daddy Was a Very Good Boy

My daughter loves stickers. Since we got to a lot of doctors for my son, she also gets stickers at the end of the appointments for being a good, patient girl while we pay attention to her brother. So, whenever stickers are available, she loves to put them all over us and herself. She just loves my husband, and even has a little "Daddy Dance" that she does when he gets home. I just got one sticker, but Daddy must have been a really good boy because he got lots of stickers. How cute is she? I can't stand it...ohhhh and those curls!!!!!!!!!!