Lining Things Up

Dane seems to be making a couple friends.  His Occupational Therapist asked my wife if his therapists for his autism services can give a detailed list of what they are working on with him.  I will have to bring that up when I take him in Tuesday after school.  She also recommended having a IEP meeting set up sooner than previously set.  That is to get on the same page of how he is responding at home and what his therapists are currently working on with him.

I went to Grandpa's house to finally bring back the kids power wheels.  This will probably be one of the last warmest weeks of the year. 

My wife bought a couple solar lights to use on our walkway.  I set them up the other night.  One was somewhat charged and lit.  The other did not come on.  Dane went outside trying to get the one to light up.  He wouldn't stop until I told him that we would have to put it in the sun to charge up the battery.  Then he was like, "Battery's dead?"  I said "Yeah."

Tonight I thought the kids could play outside being such a nice day and all.  Dane took all the solar lights and lined them up on the walkway.  He has been lining up matchbox cars and saucer lids since he was very little.  I thought this may be a nice change to our house and let him do it.  In a couple months all the outside landscaping things need to get put away.  It is funny and weird how strait and organized he puts things.  If one thing goes out of order he goes crazy until it is replaced.  It sets off his routine when something is out of place.  I would be able to move the lights back but I would have to tell him several times that I am putting them back.  I would also have to show him which light will go where or he may go into a meltdown.

Danes collection of pin wheels has decreased by 3 also.  He had about 10 lined up outside our back door.  No matter how ugly and worn they were he had to have them in place.  I took the bad ones and told them they were junk and we should throw them out.  He was fine with that but I think that he thinks that we will replace them.  Maybe I will or not..I dunno.

Spinning sandbox toys, pinwheels and matchbox cars have been Dane ultimate favorites for toys.  I'd like to get him involved in video games but he shows no interest.  I put the PS1 in his room tonight.  He showed interest for about 2 minutes and wanted to go outside.  Allyson came in and started to play Spyro and Crash Bandicoot.  I went to check on Dane and he was spinning his pin wheels on the back step.  Maybe tomorrow he will show more interest because it's in his room.


Both kids are finally starting to sleep in their own beds all night.  Allyson has a little tv in her room and that gives me time to get Dane settled into bed.  Dane has his guinea pig, Wubbzy, in his room.  He has a nite light and a lamp also.  He is staring to show that he is scared of the dark.  He used to stay wide awake and not tell us hes scared.  I ask him if he wants his lamp on or if the nite light is good enough.  Sometimes he will say to leave the door open also.  The little space heater has helped keep him in his room at night also.  The calming white noise and soft heat puts him into a deeper sleep.  I am starting to think he sleep walks. 

Therapy Plus School

With Dane now in Kindergarten, his routine of therapy on Tuesdays and Thursdays for 3 hours have been set off.  He will now have his autism therapy 1 day a week for one hour after school.  I hope that this isn't too hard on the little guy.

I have to get up at 4:50 in morning and get ready for work.  I need to be out the door by 5:40.  In that time I have to get ready, eat a quick breakfast if I'm lucky, get the kids ready and get out the door to meet my wife in the parking lot at work.  We exchange a few words.  She gives me the keys.  I say goodbye to my family and go to work for the day.

Usually my wife would have to work all night and then take Dane to therapy.  She has been so exhausted from working all night and then driving home, changing and then driving 40 minutes to get to Dane's therapy session.  For the next few hours she needed to wait or go window shopping just to stay awake.  A mountain dew or McDonalds cafe' usually perked her up just enough to get her back home and crash.

Along side the stress of raising the kids and working separate shifts has taken a tole on our marriage.  We bickered a lot causing tension in the house.  The kids could sense it.  We felt like we were growing apart.  We realized there was a problem and got it all out on the table of our issues.  The biggest one of getting my wife off of the night shift and to go part-time.  Now to assess the situation and work on our budget.

Parent/Teacher Conference

I was pretty leery about what was going to be said with Danes teacher.  Are they having troubles with him in class?  Is he keeping up to his peers?  Has he had any meltdowns?  I was worried going at this alone because my wife works the night shift and she sleeps at this time of the day. 

Grandpa came and took the kids while I went to the conference.  To my surprise I got right in and didn't have to wait.  Sweet.  This shouldn't take too long I hope.  I was there for 25 minutes.  I asked a guy I work with who's daughter is in the other class how long his was.  He said 10.  I must have rambled on.  We had a few laughs as well.  I cannot believe what they want kids this young to be learning.  How well they should be reading and tying their shoes by the end of the school year.  All about this "no child left behind" deal.  Even the teacher said that kids learn at different paces.  True, and what of his autism?  Is that affecting him from learning?

It sounds that Dane is doing well in school.  She had concerns that he isn't paying attention but when he's looking away and she calls on him, he answers her.  This was like when he was in pre-K.  During that time Dane had to have a matchbox car with him all the time.  He would spin the wheels while the teacher was talking.  It would appear that he is not paying attention to the teacher.  Also, when asked a question he would answer correctly.  I am thinking because of his auditory processing disorder that he cannot visually watch and listen at the same time.  He needs to be looking away to listen to process what he is being taught.  I think.  How else would he know the answers if he's not paying attention.  This is his way of paying attention.  By looking away.

I told the teacher about forewarning Dane when certain things will happen.  Like the fire drill they had.  He wasn't prepared and the bell scared him.  She said he sat at the table and cupped his ears.  I asked if the fluorescent lights bother him also.  She told me that she usually only has the front row of lights on because of the sunlight that comes in.  As far as him learning she is not concerned that he is lagging.  That was very good news that he is catching up to his peers. 

The teacher mentioned that the therapists from the center where Dane receives his services faxed over his records what they are working on with him.  She couldn't believe this was the same child from what she read.  I am thinking because school is so structured that he has learned to go with the flow.  At home, our structure is bad.  As I said, my wife and I both work full time opposite shifts.  The structure is her way, then my way, then the weekend we are both home with the kids and they don't know who to listen to.  It's hell. 

Structure is very important.  Routine wise.  Break the routine and pay the price.  Dane relies on a set system of his daily activities.  If something is out of sync it drive him over the edge.  Thus, the meltdown.  Tipping over chairs, hitting his sister, banging his head, slamming doors, knocking over books, and so on.  Destroying the house. 

The best way to handle a meltdown or tantrum in other words is to avoid it.  Get to know the child in what sets them off.  That's a bit of the problem.  You may think you have something figured out and then something else arrives that triggers off the emotions.  Keep a log of when and where things out of the ordinary happen.  Piece together and pinpoint the problems.  Work with them and talk to the therapists about what needs to be addressed to.  Work with the child and don't yell.  It never helped with Dane.  He never understood why I would raise my voice.  Before he was diagnosed it seemed like that would make him learn right from wrong.  It didn't.

Moaning Noises

It was a fairly decent day and I went to pick up Dane from school.  He was happy and ready to go home.  One of the teachers was standing off in the distance with a radio controlled miniature school bus.  He was talking into a headset microphone and the words would come through the bus and talk to the kids.  The bus also sprayed water at the children.  They loved it.  The bus reminded me of Thomas the Tank Engine.

Things are getting slow around work because of high gas prices and the economy.  Every 3rd Thursday I am expected to go to Danes intensive therapy to observe and talk with the counselors.  I am approved for Family Medical Leave for those days.  I am not sure if many employers approve FML for autism services.  These days are unpaid.  Work also has been having plant shutdown for lack of work for the past several Fridays.

The main topic today at therapy was Danes noises and moaning he makes.  He curls his tongue and makes weird loud noises constantly.  We have to pay close attention to one of the noises in which he is unresponsive and is staring off.  That is a sign of a seizure and we need to document that with video footage.  She wants to know what he looks like before, during and after the episode. The counselor is concerned that she is referring us to a Neurologist for an brain scan to see what triggers the seizure.

Other noises he makes I think are normal.  When he drives his little cars around, he makes motor boat noises with his tongue.  Another noise he makes is when he is active.  He curls his tongue and makes loud Luuu noise.  Those can be redirected. We tell him to stop and he answers and then continues to do it.  On the other hand, his moaning and lip biting and staring off and doesn't answer when spoken to is the one we need to really watch.  That is the concerning noise we need to document.  I haven't been documenting anything video wise with his unusual behaviors.  I really think that it is time to start a separate taping of these instances that we are trying to figure him out with and learn more about his stims.

Sleepy

With Dane going to his therapy treatment after school he falls asleep on the 40 minute drive to his session.  It's not hard to see why.  He wakes up at 5:30 in the morning and goes to work with me for a 20 minute drive.  There, I meet up with his mother and exchange a few words.  She hands me the keys to her vehicle which I bring home and she leaves for home.  Unless Dane and his sister fall back asleep, he is awake from that time all the way past 4 p.m.  His therapy starts at 4 and he is very groggy waking back up from the quick cat nap.  By that time he is not interested in his therapy because he is too tired.

The counselors have a hard time understanding why he is so tired out at 4 o'clock.  I keep telling them, "My wife works nights and I get the kids up and exchange them in the parking lot with her."  They work well with him but they have no idea how hard our life style is making ends meet to raise our kids.  They think that it will be so much easier for one of us to work part time.  I agree to that aspect, but lets face reality here.  Easier said then done.  There are bills to pay and making any less income will add to our stress levels.

Before school started, Dane had therapy in the morning from 8-11.  There he was more alert and cooperative.  Now, he's in school all day and then therapy for a couple hours afterwords during the week.  That makes for a long day for the little guy.  Cut him and me some slack here.  I work all day and then drive him there and he goes to school and has to try and concentrate what they are working on with him.

Time Out in School

After picking up Dane from school Monday I asked the usual question.  "How was school today?"  Dane usually responds with, "Good."  Okay, that's a start.  "Did you have fun?  What did you learn today?"  Dane says he likes school and that he got a time out.  A Time Out!?

I ask, "What happened?  Dane said, "I dunno."  Then all he said what that, "Teacher is naughty!"  I was getting ready for bed and my wife was out the door going to work.  I told her, "Dane got a time out today."  "For what? " She says.  I said he didn't tell me why.

The next morning my wife was getting Dane ready for school and she asked about the time out.  He responded with a horrible meltdown.  He may have been getting sick and not feeling well so he stayed home from school.

I brought up with Danes therapist that he had a time out and won't tell me what happened.  I asked her if she can get it out of him.  He gave her two stories what happened.  Either the whole class got a time out or just a small group including him got a time out for hitting.  I told the therapist that the teacher didn't say anything to me about this time out incident.  Maybe it wasn't that serious and that's why she didn't tell me or send home a note. I said that it was interesting that he told me and brought it to my attention.  That's progress with his communication that something happened.

Play Date

Since my wife works the night shift I need to keep the kids entertained to let her get sleep.  Usually I have to run out to the country to visit their Grandpa.  Out there I get a chance to put my feet up and let the kids run around.  I also get to get caught up on my family and talk with dad.

I have to discipline the kids when they don't listen or do bad things so I punish them by not going to their Grandpa's.  That also hurts me because there I can unwind and have help watching my kids.  I feel they see too much of their Grandpa and that's probably why they don't listen to me.  Grandpa likes to give in way too much and not say "no."  That causes trouble for me when I get the kids home.  They feel like they can do whatever they want and walk over me.

Some days I am so exhausted after working all day.  My feet hurt, I'm tired and hungry.  All I want to do is get home some days and take a shower and sit down.  Luckily today the kids were actually napping when I got home and I got to catch a cat nap with them.

After they woke up that's the start of another full time job keeping them happy and entertained.  I let them go outside and Dane organizes his pinwheels and played with the bubble mower.  Ally plays on the swings.  Sometimes Ally will take things from Dane and he hits her in the back.  I hate it when he does that.  He needs to learn to use his words and not his fists.  He needs to hear that makes his sister sad and it hurts her.  The no hitting social story from the school helped explain that to him.  His therapist also explains to him.  He has a hard time seeing how others feel.

I told them we'd go up to the park because I had to send out a letter for another speech evaluation on Dane.  I went the wrong way and instead of turning around I went to my cousin's place.  He has 2 boys the same age as mine.

It is important for Dane to have someone close to him to play with.  I have seen many benefits with his behavior watching and learning from other children.  Daycare is very beneficial having him see all the other kids dressing themselves and how they use their manners.  We do not need daycare the way our work schedules line up.  We use it 2 days a week for Danes benefit.  It also helps my wife to get some sleep after working all night.  It also gives me a couple hours to get something done around the house and a break from the kids.

On Tuesdays and Thursdays Dane has his therapy after Dawn works all night.  She has to come home and quickly get the kids back out the door for the next few hours.  I don't know how she stays awake.  This is just something we have to do to help Dane overcome some of his issues.  He is maturing and learning to do things more independently.  Right at the moment his fine motor skills are declining and therapy and us have to help him work on that.

Emotional Behavior

Behavior.  What set's it off?  Sometimes something as little as shutting off the kitchen sink.  Dane will have to turn the water on then off or he will have a meltdown.  He has been getting better with his intensive 3 hour therapy sessions two days a week.

Over the weekend we had a cookout at my parents.  We were looking at how bad my dads shingles are on his roof over his house.  45 years old those shingles are and now dad is considering putting a steel roof on.  The shingles on the garage that my brother and I helped roof less then 8 years ago look like crap.  Most of them are curling up already?  Everything is made so cheap.  Those shingles had a 30 year warranty I thought?  Dad says shingles these days your lucky to get 15 years use.

The neighbor down the road stopped in on his 4 wheeler.  He told dad about his steel roof that he put on and wanted to show him.  He wanted dad to jump on the wheeler and take him down the road.  Dad didn't want to go but my brother and I told him to go.

Dane didn't see that Grandpa left on the 4 wheeler and then seen him down the road.  He got really upset.  He stood on the edge of the driveway crying until Grandpa got back.  After he came back, in the neighbors truck, Dane stormed off because the 4 wheeler didn't come back.  He wanted to go for a ride.  He stormed off down the road and I had to run to catch him.  He stayed on side because I have really been pushing him to stay on the side of the road. I never let him close to the road unless I am with him.  I don't know if he'd just walk out into traffic.  Eventually I got him turned around to walk back to the house with me.

Later that evening then neighbor came back on his 4 wheeler and I got to give Dane a ride.  I took him down the road to their farm. We looked at the cows and turned around.  I knew the whole while he was thinking about riding it.  I think that made him happy for the rest of the night.

First Big Rides

I am in shock.  Dane went on the rides at the fair and loved them.  Allyson really wanted to go on the ferris wheel.  She is 3.  I rode with her and my wife rode with Dane.  My sister was in the area and we met with her.

On one of the inflated jumping kids areas, Allyson got her skin on her heel peeled back.  My sister took Dane and went on some rides with him while we took Ally back to the car.  We needed to get her some socks or a band aid.  Something to protect that raw mark on her foot.

What are the odds of finding only 1 sock in the car?  It was black and wearing it with sandles it looked like a small cast.  Needless to say now she could walk because it wasn't rubbing against her shoe anymore.

Dane with cousin and aunt

We needed to catch up with my sister and find Dane.  We walked around the fair looking for her and decided we'd catch up with her when the entertainment started.  Ally wanted to go on the ferris wheel again.  We stood in line and there was Dane and my sister and her daughter waving at us.

Dane went on the ferris wheel, scrambler, spinning strawberry ride, hang glider and tilt a whirl while we were catering to Ally.  Those I thought would be intense for him but he had fun.  Later, my mother wanted to go on the tilt a whirl.  We took Dane and his cousin, Mia on the ride.  It was a fast ride and a car that spun a lot!  Dane was shaking and I told him to "Hold On."  He looked at me and said, "Daddy, this is cool!"  I laughed.  I did not expect him to go on these rides.

It is hard to believe he will be in kindergarten this year.  Tonight we met with his teacher.  She seemed nice.  Looking at his class mate list he only has 2 kids he knows from last year.  I wish they could have had him in a class with more kids he knew.  I told him that he will make lots of new friends.  He is happy to be going back to school.  The school system has a good routine and I think that helps Dane adapt better off in the long run.

Instead of Dane having therapy in the morning on Tuesdays and Thursdays he will have it after school.  That will be easier on my wife who works all night in the factory and takes him.  Now, I will have to take him after work and after I pick him up from school.  I just worry how wore out he will be after going to school all day and then having a few hours therapy afterwords.  I am guessing he will sleep for the 40 minute drive there.  By that time he probably won't want to do anything because he will be too tired.  I hope it all goes well.  He has been through a lot the past few years since birth to 3 and intensive therapy.

Big Boys Club

During my son's intensive therapy today we were given advice on how to treat Dane more like a big boy and make him feel needed and appreciated.  The therapist recommended small chores and not to give him a question option of "Would you; Can you?"  Instead we have to get down, put our hands on his shoulders and calmly say to him, "Put on your shoes."  "Pick up your toys." etc...Try to make and hold eye contact as well.  She explained that once a parent masters control, all it takes is a look and the child will know what you want of them and they will stop in their tracks.

The therapist explained that my son is expressing a need for attention.  This can be both positive and negative.  Any form of expression you give either praise or anger gives the child some type of attention that the child wants.  You must remain calm and not accelerate their emotion.  Again, you must get down to their level and explain calmly what you want from the child.

She also gave us some explanation saying that telling Dane that he wants to be a big boy and help out like a big boy.  She called it the Big Boys Club.  She wants us to explain to him that when other kids are getting ready for class what other kids will think when he's not ready.  When he refuses to brush his teeth we have to explain that he doesn't want yellow teeth or cavities.  We have to push into his world and help him to grow up.  Children live in the present and we as parents teach them about yesterday and tomorrow.  We should not dwell on the past or worry about the future.  We need to live and connect with our children in the now. 

Working with a child and helping develop their fine motor skills is a skill a child doesn't loose.  Recently, Dane stopped zipping up his pants and coat.  He says he can't and it usually makes me give in to him and zip up or start for him.  The therapist told us that he's doing that for attention.

Tonight I kept giving him the "Your doing so good; You are a big boy; You are such a great helper."  Compliments.  I'm not sure but I think he could see right through it.  Getting his jacket zipped up didn't seem to take as long.  He said he can't.  I got it latched and said, "Okay, I helped, now you finish."  He zipped up and we spent the next several hours outside playing.

Another thing the therapist suggested was separating his sister from him.  She is attached at his hip when ever he is around.  I can see why he gets angry at her and hits her.  He wants time away from her.  We were recommended to get Dane into his room and play alone and have Ally do something else, away from her big brother.  Easier said then done is what I was thinking as she told me this.  It's worth a try.

I mentioned how washing his hair is like pulling teeth.  She suggested that it may be the tingling sensation he feels down the back of his neck while shampooing that makes him so restless and irritable.  She thinks that showering him may help stop that sensation.  

Getting the kids in the house and ready for bed Dane had lost a small bell that was in the guinea pig cage.  He freaked out.  Screamed and cried.  He opened up the cage and was digging through their bedding looking for that little bell.  He was a train wreck.  How can something like a small bell turn someone into a basket case?  I don't know.  Until he found that bell did he not feel like a total weight lifted off his shoulders.  I am so glad he found that bell or I would never hear the end of it.

stress

Why is it when parents work so hard all week, coming home to kids who don't listen and being together as a family make your work life much happier then your home life? I cannot understand this. All I want is a happy family. Having an autistic son and a daughter who copy's his behavior makes things harder.

My wife works 3rd shift in a factory. I work 1st at that same job. We do this in order to eliminate day care and make ends meet. Do ends ever meet? Why is it so hard to get our kids to listen to us and make our home life happier?

The way I see it is that my wife has a certain way of raising our kids. When I get the kids is a different way of control. When were together as parents our kids take control over our household. They do not want to listen to either one of us. They fight and tell us "No."

They listen to my wife when it is just her watching the kids. They listen to me when I have the kids. Our structure as a family when were all together seems to diminish some days. Were unhappy. Then the kids settle down and then there is serenity where we can be happy again. It's the time of disagreement and the kids fighting and not listening that brings us to our knees wondering, "What are we doing wrong?"

Things would be totally different if just one of us could stay home. We are living as single parents raising these kids. Will things get better? I sure hope so.

With the intensive therapy starting for my son and my daughter getting out of diapers things should be getting back on the right track. God I hope so.

water, left out & noises

It really heated up this week.  Yesterday and today reached a high of 96 degrees.  For the rest of the week we're back into the mid 60's.  It will probably storm with this cold front moving in.  It was so hot in the house I had to set up a sleeping area in our basement so we could all sleep.  I'd run our air conditioner but our electric bill goes way up.  I switched over to box fans for our windows but from what happened last summer the bill was no different then if I ran the air conditioner.  Why waste the energy if the house doesn't cool down?  Just go downstairs I figure.

Dane loves water unless it involves getting his hair washed.  My sister-in-law bought a water sprinkler system from the dollar store.  She thought that the older kids would have played with it but Dane was the only one.  Allyson, my daughter, stayed in the clear because the water was cold.  Once Dane ran through it once, he had fun with his cousins spraying him with their super soakers.  I originally bought the water guns thinking Dane would play with them but he can't squeeze the trigger.  I'd like to go back and maybe find him a battery operated water sprayer so he can play and get back at his cousins.

Grandma had 5 tickets to see the same circus we just seen last week.  I do not wish to see it again but my nephews didn't see it.  Grandma took my 2 nephews and had 2 tickets left for kids 12 and under free admission.  Dane overheard that they were going to the circus.  I told him that he already seen the circus and now it is Damian and Tylers turn.  He went to our truck and threw the booster seats in the back and then buckled himself in.  There he stayed spinning the wheels on his little car.  I came to check on him from time to time and ask if he was going to come out and play.  He said "No" and that he's going to the circus.  As long as he wasn't getting out of control I thought I'd let him sit in the car until he was ready to come out.

A while later Grandma and the boys left and Dane came out.  He took it pretty well seeing that Grandpa stayed back.  He got out his power wheels jeep and rode around the yard with his sister on her 4 wheeler power wheels.  I got out the go cart and we chased each other around the yard.  Dane wanted a ride because I gave Ally one.  He would have had a complete meltdown if I wouldn't have but it was no trouble.

Dane has his therapy tomorrow and I have FML off of work.  I get to talk with one of the counselors with my wife to discuss how things are going and if we need to work on anything new.  The noises he is making sticking out his tongue and unresponsive when we talk to him is to be of concern.  The counselor wants us to try and capture on video what he looks like during the process.  It may be seizure activity and may lead up to an EEG scan on his brain.

Assistance/Autism Services

Our county case worker stopped in tonight to check up on how Dane is progressing.  She usually makes it a once a month deal to see what's new or improving with his behavior.  We had Grandpa take him and his sister, Ally, to Grandpa's house so we could discuss his behavior.  She did not want him around to over hear us talking about him.  

Right now we do qualify for a little bit of state assistance.  Not much.  My insurance, which I will be fighting with in time, will have to cover past my deductible.  Up to 50k I think. The way she made it sound was the state might pitch in for the co-pay.  I don't even know how much that is but I don't think it is much.  To tell the truth though, I am not fully sure my insurance will cover anything.  I hope I am wrong and they pitch in what I pay for my premium and my employer pays.  The insurance can word their policies any way they want.  They make it sound like their on your side. They switch gears and reword things and say they don't cover autism services.  I really need to look more into my insurance or state laws on insurance paying for such services.

Friday she will be coming back to observe him further and see if we will qualify for further assistance.  I don't get it.  We were approved no more then a couple months ago.  She is going to make a choice if we get assistance based on one observation?  Is this going to be a case of he looks fine, leaves, and then his autism acts up and it's meltdown city?  You cannot see everything what happens in a one hour session, c'mon.  She has observed him at school before.

I think a lot of this is about the budget cuts their doing in the state.  She didn't say but that is why "I" think she needs to re submit her paperwork on my son.  They just may make a determination that he isn't "severe" enough for the state to help out.  But the state can continue to spend money on a bunch of other programs the screw the taxpayers even more.