I’ve survived!

Well, I put my kiddos on the bus this morning. Amazingly I didn’t even cry. I was proud at David as he breezed past the first seat. The one he was supposed to sit in. And sat with a little boy from our neighborhood whom we don’t know. Celia pouted. She wanted to follow the plan. Sit together in the first seat. It was an issue again in the afternoon. But they survived. David’s book says that he did well. That was from his Learning Support teacher. Nothing from his Kindergarten teacher. Celia was thrilled to announce that there were no tests and her teacher had no reason to yell at her. There was one boy, however, who kept talking. Oh, and at 12:30, I indulged the hyper-vigilant side of me and called the school nurse. David was supposed to get his Risperdal at 12:10, after recess. I got hold of the nurse. She put me on hold for about 5 minutes. When she came back, she apologized and said that it had been a busy day. She also added that David was now on his way to her office. She said that everyone forgot. Once again, being hyper-vigilant has paid off. So in your face, Dr. Collins!

Checkups

On Friday Celia and David saw the Pediatric Developmental Specialist in Lubbock for the last time.  When the nurse, Jesus (Hay-Zeus), called our name to go back, Celia was in the bathroom.  David and Daniel rushed to Jesus and I walked toward the door and told him we were waiting on her.  The door closed.  I could hear Jesus tell them that we had to wait for mom.  But I couldn’t see what was happening.

Celia emerged and we joined Jesus and the boys.  Henry was buckled into his stroller, so he was no problem at all.  Jesus immediately said that when he told them they were waiting on me, David stopped and waited.  He said he was impressed at how well David is doing.  I was beaming with pride.

After weighing and measuring the kids, we were taken back to an examination room.  Luckily we didn’t wait too long.

The doctor came in and began with David.  Celia stood right next to me, and couldn’t stop trying to interject information about her own life.  I tried listening to her in hopes that she would calm down, but to no avail.  Finally I said to her that the doctor was focusing on David right now and she would have her chance soon.  The noise in the room from the three boys was deafening.  I’m amazed the doctor and I could talk at all!  But we did.

She asked how school was going for David.  I said we’ve taken a time out because of the move.  But he has a great interest in learning to read, and in all areas he’s progressing.  He’s been coloring and writing more.  His speech is improving.  He knows the phonics sounds to most of the letters.  He is recognizing bigger, smaller, same, and different.  And he’s answering questions better.  Then the doctor asked where David is receiving therapy.  I answered that I’ve been doing it all myself.  (Services in this area aren’t worth the battle with the insurance company!)  But all in all, the Risperdal and Strattera seem to be doing well with David’s ASD.

Finally time for Celia.  She asked about school.  I said she finished the year well and is excited about homeschooling.  But we’ve taken time off because of the move.  The doctor asked if there were any academic concerns.  I said no.  Celia makes very good grades.  And I told her that her first grade teacher never told me until I asked her, but her attention improved at the end of the year, and Celia left her seat less often.  (I had no idea she was having a hard time staying seated!!!)  So, the Strattera is helping Celia.

During the entire visit, in the background, David and Daniel both wanted the Larry Boy stuffed toy.  I ended up having to set the timer on my phone for 5 minutes and make them trade.  The arguing and fighting ended.  As soon as the timer beeped (which was really annoying in the small room) you would hear, “Here you go…” and then Larry Boy would trade hands.  No head locks.  No scratching.  No punching.  Just sharing.

The doctor seemed very pleased with what she saw and heard from Celia and David.  I was very happy myself.

I’ve been delinquent…

Well, lately we’ve been consumed with packing boxes, keeping David from killing Daniel and even Henry, seemingly pointless yard sales, and coping with all the upcoming changes.  I’ve neglected my poor blog.  And my blog stats confirm this.  My number of views have gone from 64 to 30 to 10.  Yes, I have not been the dedicated blogger I vowed to be.

School has been shut down for the time being.  David’s Risperdal is still a double dose in the morning.   And then the rest of the day consists of bribing Celia with tokens to help us pack and do laundry, doing ABA holds on David, removing Henry from the dog’s water bowl, and packing one box every two hours.

My one piece of joy and thanksgiving is that yesterday I heard Amanda promise Caedmon that he would see us every day this week.  I have had a major fear of wanting to see them this week and only hearing that they are too busy with their move.   Yes, they are moving too.  But not to Pennsylvania like I want.  They are merely moving to a new home here in Plainview.  I want so much for them to move near us.  I don’t want to lose Amanda’s friendship.

Thankfully there are tools such as blogs, email, and cell phones.  But when you consider that the kids and I are used to seeing them a few times a week, this is a drastic change.  Friendship like this is a once in a lifetime occurrence.

I am ever so grateful that I also have Melissa’s friendship.  And since she and I met via email, our relationship won’t change no matter where either of us lives.  I think her friendship will also help me cope with our new situation.

I am also hoping to have Celia continue blogging.  As well as having the kids make home movies on DVD and then mail them to Caedmon.  We are blessed to have a video camera that burns directly to DVD.   As for Amanda and I, I intend to blog and email and I’ve already increased my cell phone minutes.

Bad Autism Week At an End?

Yesterday seemed to be much better.  David still attacked Daniel a few times, but not like it was last week.  Last week was horrible.  Every time I tried to pack a box, I had to stop and run to someone’s rescue.  I was barely able to do laundry!

By the end of the week I began to wonder if it was all a result of a growth spurt.  Typical growth spurt behaviors involve spitting, violent behaviors, accidents (daytime and nighttime), and some other regressive behaviors.  Last week all we saw was violence.  But, he is getting older.  David will be 6 at the end of September.  We’ve seen evidence of his maturing in many facets of our daily life.

In the past, we handled growth spurts by  increasing David’s Risperdal.  So, we again decided to increase his dose.  Typically David gets .25 mL three times a day.  His last growth spurt we gave him .5 mL 3 times a day.  And when the growth spurt was over, it was too much of a dose.  It actually made him violent.  I ended up keeping him off the Risperdal for a few days for it to work it’s way out of his body.  This time we are giving him .38 mL  in the morning and .25 mL for his other 2 doses.  And beginning yesterday we are seeing an improvement.

I even was able to pack a few boxes AND do 5 loads of laundry.

Method to My Madness

Lately I’ve been asked a lot of questions about autism, or therapy, or signing to my children, or eating or sleeping habits of special needs kids… And the list goes on. I’ve been trying to tackle the issues that people seem to want to know about. The result is a combination of chronological journaling and random posts about past major issues.

But what I really want, is for my blog to minister to people’s needs. Whether the need be completely superficial and just wanting to know what size knitting needle I used on Celia’s top, or if someone wants to know more intimate details, like just how many lipsticks David has completely wasted.

So, dear public, I am here to welcome questions. I want to raise knowledge and understanding of autism and other disorders. I want to help people that are also beginning this journey. I can offer empathy and also a long list of books to read!

Daniel’s mishap

Daniel and David were playing outside this afternoon. Scott was doing yard work. I was knitting with my sore knee propped up. Daniel came in naked. They were playing in water, and as soon as his clothes become a little wet, he strips! I asked if he was going to get new underwear. No. He had no intention to redress. He had obviously come in only for shoes. He held up his sneakers. “Shoes?” I replied that yes, they were his shoes, and yes, he could wear them. He sat, put them on, and ran back outside. Still buck naked.

About a half-hour later, Scott rushed in carrying Daniel. I heard something about a puncture wound and jumped up. At that moment there was a knock on the door. I was in jammies. There was no way I was opening the door–especially since it was most likely an athlete–and I was in a camisole! I grabbed Daniel and left Scott to the door. (It was an athlete.)

In the bathroom, I put Daniel on the vanity with his feet in the sink. There was small bar of Lever 2000 there (I only put small bars there now. See Toilet Trouble.) I washed his foot a few times. All the while the poor boy screamed. I hollered for Celia to bring my phone. Scott came a moment later with the phone. I then asked for a dark washcloth or towel from the cabinet. He hollered that there were none that were dark colored. There were some old ones that had become purple after I dyed them navy. I said the purple ones would do. I was handed a dark green washcloth.

As I applied pressure to his foot, I called the doctor’s office. They were closed. It was only 4:45! I pressed 1 to get the answering service. He gave his name and asked what I needed. I told him my son stepped on a rusty nail and has a puncture wound on his foot, and I needed to know what to do. He said that he didn’t know because he wasn’t a doctor or nurse. I said I understood that, and could someone call me? He said Dr. Turner was out of town. I asked if there was someone on call. He said yes, there was a clinic. I said Okay. He then gave me the number. I had nothing to write with, so I dipped my finger in Lever and wrote on the mirror. I called the clinic. Their voice mail said their normal business hours were from 8 to 8 Monday to Friday and then special Saturday and Sunday hours. Then it said please call back during normal business hours. It was 4:55 on a Monday!!! Then I was offered the option of pressing 1 for an emergency. I did. I waited a minute, and then was disconnected. I called again. I went through the whole message. I pressed 1. I waited another minute, and then got a person. I went through it all again. Her reply of course was: I’m not a doctor or nurse, I don’t know what you should do. I slowly said, “Can someone call me?” I was at the end of my patience. They’re an answering service after all. When they say what do you want? Aren’t you supposed to tell them what happened? That way they can tell the doctor…

We sat and waited a few minutes, and a woman called back. I don’t think she was a doctor. Probably a nurse practitioner. She went the route of playing the safe side. She said I should take him to the ER so that he wasn’t faced with a nasty infection. So to the ER we went. Daniel screamed when he saw the hospital. He screamed when he saw the triage nurse. He screamed when they wanted to take his temperature. Then we left to fill out paperwork. I had to put Daniel down. Paperwork done we went to sit in the waiting room.

I was just finishing my second stitch on Celia’s halter top when they called his name. I think it was an all time speed record for our ER. They are not noted for speed. (When I had chest pains, I was in the waiting room at least 45 minutes!) They glanced at the spot, and said, “He’s up to date on shots, right?” I said, “Uh, yes…” Not that his shot records were with me. They said he’d be fine. I asked, “Even though it was a rusty nail?” Then the doctor decided to give an antibiotic. So Motrin and Erythromycin. That’s it. We waited another 1/2 hour and then the nurse came with the prescription and discharge papers.

All of that for erythromycin.

The real kicker is that I drove straight to Wal-Mart. It was now 6:25. I then realized that all the screwy doctor’s hours were because today is Memorial Day. I decided to call the pharmacy. Push 1 for English. Push 0 for a pharmacy assistant. Then I heard, “The pharmacy is currently closed. We will reopen tomorrow morning at 8 AM.” So I drove past Wal-Mart and went home.

All of that to wait till tomorrow to start the erythromycin.

…I guess I could’ve just waited till the morning to call Dr. Turner.

Strattera is going well!

Well, I’ve had nothing but positive feedback from everyone involved with my kids. I didn’t tell people we’d started Strattera. I just asked how it was going. The librarian said David did really well the last few weeks. At church today they seemed excited how well David did. They said he did excellent. This past Wednesday, Celia’s school walked to the playground. We met them there for some shared playtime. In talking to her teacher, she said Celia finished out the school year very well. I asked if her attention improved. She thought half a moment, and said, “Yes. She did seem to leave her seat less and fidget less.” This was all new to me. She had never mentioned before that there were any issues with leaving her seat and fidgeting. I had asked about chattering back in February, and the teacher had said it’s not too little that we’d have to worry about social issues, and not so much as to be a distraction. That was the same day she casually mentioned that Celia had attention concerns. Of course, I said it first and she agreed. Then I was told that the 3 F’s she received her first week of school were a direct result. I knew that her spelling F was because of it, but she didn’t tell me that Celia stopped mid-reading to ask questions about what sex the horses were and what their names were. That was why Celia scored 27 words per minute instead of closer to the required 40.

Anyway, enough of a vent. School is done. I intend to return to homeschooling. I would take a break, but Celia wants to start up right away. In fact, when we got home from school on Friday, she asked if she could start homeschool right then. She said she’d like 10 sheets of work! I said we’ll see. We ended up doing fun stuff to celebrate the end of school, instead.

Personally I’ve seen growth in Celia’s ability to follow a two-part command. She has also been a bit more trust worthy in getting herself ready for the day. I spent months sitting next to her in the bathroom walking her through each step of how to get ready for school. Things a typical 7 year old should know.

With David, I think it has quelled some of his hyper-activity. Not all mind you, but some. I didn’t want to stop it all anyway. I just wanted a little help.

This morning he sat in his chair at church during praise and worship. During the final song, he came to be held. His legs hung to my knees, but I didn’t care. I was worshiping God and feeling so very thankful for my children. I was praising God for everything that has been going so well. I was thanking Him that my ADD daughter was enjoying holding her Cabbage Patch kids while listening to praise and worship. I was thanking Him that my ASD son was allowing me to hold and cuddle him. I was thanking Him that no matter what we may go through in the upcoming months, I will always have their love and His love.

Trial and Error

Celia was getting really difficult again. I was really frustrated. Even Amanda was at the end of her rope. Honestly. When we were all at Target, Amanda considered telling Celia that if she didn’t stop the way she was acting, they were not going to eat dinner with us. No amount of talking, understanding, threatening, or cajoling would get her to behave. It was a rough night. She was upset because the Cabbage Patch Doll she wanted, Carmen, was no longer there. I hugged her. I talked her through it. I offered another doll. I suggested she wait till we find the perfect one. I even let her call for help to ask if there were any others. Unfortunately help never arrived. We were all horribly tired and wanted to eat. Presley, Amanda’s daughter, and Henry were especially fussy. We needed to leave. Celia lost it. I promised her that we would at the very least go to Wal-Mart that night and look there. After a particularly rough dinner, I took them to Toys-R-Us. We went straight to the Cabbage Patch Dolls. We hardly looked at anything else. Yet Celia was still upset. She just wanted to get one but wasn’t happy with any of the ones available. And I still kept my promise and took her to Wal-Mart. It was the end of the night. It was after 9 on a Friday night. All the kids were losing it. So, we left without a Cabbage Patch.

Day after day of this behavior, I didn’t know what to do with her. Amanda asked if she was always like this. It’s part of the reason she started public school back in February. But things lately had been really good. I’ve been really enjoying days off of school and looking forward to the end of school.

It was Amanda who suggested that the Strattera was making her tired. I had noticed that since going on Strattera, David had taken a few naps. After all, if it made him tired enough to take naps, then perhaps it was making her that tired too. And since she’s in school, there’s no opportunity for her to nap. And she’s 7. Who wants to waste the day napping? So, I’ve switched them to taking it at night. What a difference it makes! Celia and David are both doing so much better.

An Introduction

David is a very intelligent little boy. He is full of love, and very cuddly. And he is autistic.

David was born on an average day, in an average way. His apgar scores were 8/9, losing points on coloring. He was 8 lb, 9 oz and 21 1/2 inches. He was a natural at nursing. But he was fussy. Always fussy. He didn’t nap. He would nurse and then sleep 10 minutes. Then he would fuss. A while later I would nurse him again, only to have him sleep 10 minutes. And then fuss.

At his 4 month check-up, he refused to follow the doctor’s light. He would not track. And yet I’d seen him do it before. That’s what I had told the doctor. But then… Well, after that I noticed that he didn’t alert to all noises. Could he be deaf?

I did little tests around the house. I tried ringing bells. Whispering. Lots of noises and pitches. I took note of what he alerted to and what he “ignored”. It seemed to me that he was not deaf. My next thought was Autism.

And just as quickly I pushed it from my mind.

When David was six months old, his favorite toys had spinning parts. He loved to lean out of the stroller and watch the wheels move. My sister warned that Autistic kids are fascinated with spinning parts of things. She said we needed to be doubly observant of his development.

As time passed, we fell into a routine. We pushed our concerns aside.

Then two months after his second birthday, we had our eyes opened. My sister’s wedding was in a resort in south-west Florida. David was on super-overload. He was uncontrollably hyper. He couldn’t socialize with the other kids. And he tried. It was heart breaking to watch. He tried to trade a half-eaten strawberry for a toy. He was ignored, pushed around, mocked, and blamed for everything that went wrong. I did what I could. And when I could do no more, I tried to avoid the situations. I was exhausted. I was the only parent with three kids who followed her son around 100% of the time. Daniel was an infant and nearly equally as needy as David.

But when we returned from Florida, I started the process to get evaluations. First I went to the Pediatrician. He accused me of not being able to handle my hyper 2-year old and wanting to medicate him. I was mad. But I ignored his opinion and pushed for the referral. I refused to leave until he gave it.

From there we waited for Tresco Tots: New Mexico’s version of Early Childhood Intervention. They did all their preliminary things and then finally evaluated David. They approved him for speech therapy, occupational therapy, play therapy, and family therapy. They also submitted a referral for the University of New Mexico’s ECEP (Early Childhood Evaluation Program) Team. They traveled to Las Cruces from Albuquerque and spent three hours evaluating David and his medical history. According to their combined professional opinions, David was not autistic. He had Sensory Integration Dysfunction.

Six months later we had moved to Plainview, Texas. Texas has a policy of moving kids into the public school the day after their third birthday. That is where he was to receive his therapy services from that point on. I was not keen on David going to school. Especially the day after his third birthday. The ECEP team in NM advised that David not go to school or daycare. They said that he was progressing the best at home. That he would not do as well in a classroom setting. But, I allowed everyone to talk me into allowing him to go. They raved about the teacher. The setup. The therapists.

So he went.

They evaluated him. They decided that he was Autistic. Actually, Severely Autistic. The evaluation took place in a small room. There were five adults allowed inside. And I was not one of them. The evaluation began an hour after it was supposed to. And, half-way through, they began evaluating a blind girl in the same room. That meant three more adults and vibrating, flashing toys. So, added to David’s testing was the fact that he couldn’t attend and the fact that he wanted the flashing toys, but did not socialize with the 1 1/2 year old blind girl. The entire thing was so bogus. How on earth can you claim this evaluation to be accurate? And yet the teacher stood by it till the end.

He was placed in a classroom with four highly Autistic boys. And was told they were his “friends.” And yet in the two weeks he was there, he regressed in so many ways. He regressed socially. He lost his self-feeding skills. The self-feeding skills that took such a long time to teach. In summary, after two weeks in this wonderful classroom setting, David acted like an Autistic child.

I couldn’t stand it anymore. I pulled him. Within 10 days of having him home, David began making up for some of the things he had lost in school.

I called around and found a home therapy business that David qualified for. He was all set to receive Occupational therapy and Speech therapy in our home once a week each. At the end of two months, the OT hadn’t done anything. I had even given her ideas and led her along. So, I fired her. Our speech therapist, however, was wonderful. We continued therapy with her until David no longer qualified. Right around the age of 4.

Since then I’ve done his OT and speech myself. I am completely self-educated. I have done nothing but search the web, and read books to help myself and my children. Now David is approaching his sixth birthday. I have a few months yet, but it’s looming. I have had to give in and medicate him. He takes Risperdal for his aggression, and Strattera for his attention.

This blog is meant to be a journal of our journey. Something to help others in a similar situation. Stories of our past and present. But also, hopes for his future.