8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: Autism
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts

Thursday, April 5, 2012

World Autism Day (April 2nd) and the Reason I'm Trying to Get the Word Out

When I scheduled Caleb's EEG, I wasn't even thinking that the day that we were scheduling it for was World Autism Day.

Sunday night we stayed up until about 2:30 a.m. because I just couldn't stay up any longer and needed some sleep so that I could drive to the hospital, since Tony had to stay at the house to get Cassidy on the bus.  Caleb couldn't eat Monday morning due to the sedation, which made things start on a rough patch, but I thought we were over it by the time we got to the hospital.

We got checked in and waited for the registrar to come and get us.  She never came out of her office, but called for us from her desk.  We went in, verified his insurance information and she printed the arm band.  As I was trying to talk quietly to Caleb about which arm he wanted his arm band on, the registrar came from around the desk and leaned down and immediately started reaching for his arm.  I was trying to tell her that she needed to wait, but she just kept coming and Caleb started screaming and kicking.  I was trying to restrain him, but with my shoulder still being very sore, it was quite difficult.  Another registrar came in and just grabbed his arm, which caused Caleb to kick her.

The lady that checked us in came in and told them not to worry about it, just to call upstairs and tell them that he refused to put it on and to attach it to the paperwork.  She said that she would walk us upstairs, even though I knew exactly where we were going, since we've been there so many times!

As we were walking down the hall, Caleb started refusing to move.  I got his arm and told him he was coming with me.  He tried hitting and kicking and I and the hospital employee had hold of his arm.  We were walking toward the elevator and saw a hospital security officer.  The person walking us asked the officer to come with us.  He started following us and Caleb turned his head and started spitting.  I covered his mouth while holding his arm and the officer took the other arm.  When we finally got in the elevator, Caleb was still spitting and trying to kick.  The officer pinned him up against the wall of the elevator.

When we finally got to the PICU area, Caleb was screaming and kicked the officer really hard in the leg.

By the time we got to the PICU room, another officer was there.  He ended up taking over for me and I just lost it.  I had flashbacks to the time that we had to try and readmit Caleb to the psychiatric hospital the day after he was admitted and he had to be restrained by three grown men because he was so out of control.

One of the nurses asked me if I wanted to rescheduled.  Are you kidding me?  I actually laughed at her and told her, "No!"  I went on to explain that if he got away with not getting the procedure done that day, we'd have even more problems the next time we came in.  I was on the phone with Tony when she asked me that!

I even told Caleb at one point that if he didn't start calming down and stop hurting people, I would make them tie him to the bed, like we had to do the day he was admitted to the PICU a couple of years ago because the psych hospital that had just released him after cutting one of his meds in half wouldn't readmit him!  

We made it through the initial exam without too much incident, but then came time for the IV insertion.  It took seven of us, the child life specialist, me, two officers and three nurses, to hold him down for the IV.  While it has taken us upwards of four people to hold him down before, it just goes to show you that he is getting so much stronger and I have no idea what the future is going to hold.  Tonight I heard a wonderful speaker at our church's women's event and one thing that stuck with me is that although it is important to think down the road, we do need to live in the here and now and not worry about the future, because number one, God knows the future, and nothing we do to worry about it can change it.  So for right now I choose to live in the here and now and continue to try and educate people and make sure they hear me and listen before trying to get into my child's face!

Wednesday, June 15, 2011

Summer Vacation and a Child with a Rare Form of Autism

We are only three weeks into summer vacation and I think this, by far, has been the most difficult transition so far.  It is so hard keeping to a routine and schedule with all of the appointments and camps that we have.

Caleb was off behavior wise the entire month of May and while things are better, there are still many off moments - moments when you just know which version of Caleb we are going to see.

Today I had to take Little Guy to his physical therapy appointment.  We had bought a portable DVD player hoping that if I brought that to appointments with Caleb that he would be occupied at the appointments.  Well, today he watched a short video, but then decided he wanted to play.  So he played.  But then when we were almost finished he decided he wanted to watch a video.  I told him we were getting ready to leave.  He kind of fussed, but I was able to distract him.  He wanted to carry the player, but I told him he needed to put it in the backpack.  After what I thought was going to be a major issue, he did put the player in the backpack.  But then we got into the hallway and all of a sudden I was stupid and he didn't like me and he was refusing to leave with me.  I'd get him to take a couple steps and then he would stop and refuse to go again.  At one point he was telling me he hated me and someone walked past and said, "It's alright."

Why do people seem to have to stick their nose into other people's business.  I was handling the situation and other people getting involved really doesn't help, especially with Caleb.  UGGGGGGHHHHH!!!!  I really need to get some business cards explaining Autism made and keep them with me at all times.

I read this article today and also need to sit down and implement a token and reward system for Caleb when we are out in the community, which I think would help a lot.

One big issue we've been dealing with Caleb has been his refusal to eat.  He's always been a difficult eater and not wanting to eat what I fix.  That has been one battle that we have decided not to fight (and is probably not the right answer, but with so many other things we have to battle, that's just not a battle we're ready to deal with!) and let him eat something different.  Usually it's a bowl of cereal (normally Cinnamon Toast Crunch), waffles or pancakes.  Lately he's been wasting a lot of food, just because he gets stubborn and refuses to eat.  We have stuck our heels in the sand and he does not get a snack before bed if he doesn't eat what he asks for and is given.

Well, tonight he was playing one of his games and was refusing to eat.  We gave him numerous chances to eat.  He got up from the table and I asked him multiple times if he was finished.  He said he was.  I reminded him if he didn't finish the cereal he didn't get anything else tonight.  He said he was finished.  So I took his bowl and dumped the rest of the cereal.  He got upset and went and slammed his door.

When bedtime came, he got very upset when he asked for a snack and I refused to give him one.  Again, I was stupid and he didn't need me any more.

It is so hard to listen to your child tell you that he doesn't need you and it's hard not to react, but we can't react or else things will be that much worse.

I really wish that we could have one good day.    Is that too much to ask for?!?!?!?!?!?!?!?!

I'm feeling guilty, but I'm looking forward to our trip in July.  For a week in July, Caleb and Cassidy will be attending Camp Barnabas and Tony, Little Guy and I will be going to a resort in Eureka Springs, Arkansas.  I know Tony and I both need some time to unwind and not be on edge so much.  But like I said, I feel guilty for looking forward to this.  I'm also praying very hard that Caleb gets under control before camp.  He's never been away from us for that long except for his stays at the psychiatric hospitals.   It should be an interesting week!

We are in our first full summer of in-home support hours provided through the MR/DD Waiver through the State.  We have learned that due to the difference in the amount of hours we're given in June versus July that next year if we do plan on taking a vacation or sending the kids back to Camp Barnabas, then we need to do that in June versus July!  I'm trying very hard not to complain about the difficulty in scheduling, because we are VERY thankful for the help and support that we received through the Waiver, it's just a lot to keep up on!

Some days I really hate Autism!!!!

Thursday, March 24, 2011

Heartbroken

To watch your child get so upset over something very minor is just heartbreaking!  I sit here heartbroken as I don't know how to help my child when he gets to the "out of control" point of his Autism.  I hate Autism!  I hate Autism!  I HATE AUTISM!!!!!! 

Some days it is so hard! 

We have often described to Caleb's doctors and other people that sometimes it appears that a switch is flipped inside of Caleb when he has one of his episodes.  Until people experience they don't really understand what we're talking about.  Caleb's teacher finally understood after the first big blow up at school and the resource officers had to called to help.  We talked about it later and she said it wasn't that she didn't believe me when I had explained it to her, she just didn't truly get it until she saw it happen.

Caleb has spent today and the last two days at The Arc of Sedgwick County's Spring Break Break. It's a program for kids with developmental disabilities to go while school is out and they have various activities in the community.  Tuesday they went bowling - Caleb's absolute favorite thing to do.  Yesterday they went to the movie and out to lunch.  Today they went swimming.  Tomorrow they are going to the zoo.  Caleb would have gone on Monday, but he had a dentist appointment.  He really surprised me and did very well, even allowing the hygienist to use the power tooth brush to clean his teeth.  (I just never know some days!)  I have been given nothing but good reports this week from the staff at the program.

I should have known when we got in the car and I asked Caleb how swimming went and he was fine and said he had fun.  Then immediately the switch was flipped and he was immediately angry and said, "I hate them.  They wouldn't let me go in the deep water.  I hate them."  Now, mind you, this is a child that HATES water.  It is like World War III trying to get him to take a bath!!!!

Caleb went on to surprise me by eating what I cooked - now he didn't eat a lot, but he didn't have his normal dinner of Cinnamon Toast Crunch and waffles, which has been all that he would eat lately.  Emily, Caleb's worker, arrived tonight and he was in his room.  Tonight was Bible study night, so Emily was going to stay home with Caleb while the rest of us went to church.  Caleb started not listening.  He crawled under the high chair and refused to come out.  I started talking to Emily about Caleb's practice times Special Olympics Track, which starts next Thursday.  Since Emily starts work at 6 on Thursdays, she can meet us at the practice and then I would have time to make it to church for small group and Emily can bring Caleb home after practice.

Caleb and Cassidy started talking about track and Caleb started trying to race in the house.  We tried to get him to stop and he refused.  I'm not really sure what happened next, but Caleb started banging the wall under the kitchen bar with his hand.  I tried to stop him and he got away from me.  He move down to the wall with the ledge along our stairs to the basement and started hitting that wall.  I pulled him over to the couch and restrained him.  It took 45 minutes for him to calm down and agree to go get a bath.  He was extremely itchy and I knew at that time I needed to get the chlorine off of him.

I sent Tony and Cassidy to church and stayed home in case things escalated again.  Right now he's calm and downstairs with Emily watching cartoons.

I HATE AUTISM!!!!!!!!!!!!!!!!!!!!!!!

I have to end this on a happy note, little guy has finally started pulling himself up to a stand.  Today at physical therapy he actually took a couple of cruising steps!  His therapist is thrilled with how he is doing.  I also learned yesterday that there is a tentative Best Interest Staffing date scheduled for April 7th - as long as they get the journal entry for the court!  At that time, if things go the way we expect it to go, we should then be able to start moving through the adoption process for him!

Friday, December 31, 2010

Looking Back at 2010 and Ahead to 2011

Over the last few days I have been trying to review the year 2010 and look ahead to 2011.  I have thought about resolutions and/or goals that I would like to achieve in the New Year. 

Looking back at 2010:

We've had an up and down year as a family.  In January of last year, we receied a more accurate diagnosis for Caleb.  While it is a much more accurate diagnosis for him - and has led us to many more services - it was very difficult to hear.  I wrote about that here.  We went through a period of time where we weren't sure if because of the new diagnosis we were going to be without services.  Thankfully, we had a great case manager that was able to get a crisis request approved and we were provided the services needed to help Caleb.

In February we received information about a little boy who was in the NICU needing a foster home placement.  We were selected for him and he has been with us since February 11th.  We are now in the process of adopting him.  We are waiting -  not so patiently - for the beurocratic paperwork process to run its course.

Tony and I started a support group at our church for parents of spcial needs children.  This group has been a blessing to us seeing other families come together to support and encourage others walking the same path as they are.  We hope and pray that we are able to bless them even a fraction of how much they have blessed us.

We've even endured two hospitalizations - thankfully NOT psychiatric hospitalizations - for the kids this year.  Cassidy went to Arizona to spend some time with Grammy and Pappaw in July.  She wanted to ride a bike without training wheels, so they took the training wheels off.  She had a bike accident and landed on a cactus.  She had to go to the ER the night of the accident to have a thorn removed from her hand and we thought that would be it.  However, four days later, she woke up with a swollen knee.  They took her to the doctor's office and she was admitted to the hospital and had surgery to remove all of the fluid from her knee.  It was very hard being so far away and not knowing what was going on.  Tony left that night to start the drive to Arizona and stayed with Cassidy at the hospital.  I had to stay home with Caleb and our foster children.  Daddy took great care of his little girl.

Shortly after Tony and Cassidy came home, Caleb got really sick.  He was running extremely high fevers, sleeping a lot, not wanting to eat or drink.  We went to the doctor.  She couldn't see a reason for the infection and sent us home encouraging me to get Caleb to at least drink and come back the next day.  When we went back, Caleb was extremely dehyrdrated.  The doctor took some labs and wa just going to give him fluids in the office.  However, when Caleb's labs came back she was quite concerned that his infection fighting cells were basically non-existent.  Off we go to the hospital!

Just before Caleb had gotten sick he had a SPECT scan, which showed possible hyrdocephaleus.  It was recommended that he have an MRI to rule it out.  Because of Caleb's seizure issues, the hospital doctor notified Caleb's neurologist and he saw him as well while we were in the hosptial.  Because of this, Caleb's neurologist ordered that we have the MRI while we were in the hospital as well as another EEG.

Cassidy wanted to play basketball again this fall, so we talked to our peditrician about whether or not she should play due to the surgery over the summer.  She was given the "go ahead" to play.  However, shortly after the start of the season, her knee began swelling again.  We just got the results of a MRI that she had on her knee earlier this week and it shows joint effusion (fluid on the knee).  Fortunately, it does not show an infection or abcess.  However, there was an unexplained finding and the nurse hadn't had a chance to talk to the doctor yesterday since she was in surgery.  So it's going to be sometime next week before we hear anything about what our next steps are with respect to Cassidy's knee. 

Our little guy is such a happy baby.  He is receiving services through our early childhood intervention agency due to the fact that he lost oxygen due to a complication during his delivery.  He is making great progress and everyone is very pleased.  He began seeing the same developmental pediatrician that Caleb is seeing.  We have seen her twice and she believes that little guy is apt to get a diagnosis of cerebral palsey, but believes that it will be a mild case.  Only time will tell.

2010 also saw us say good-bye to a little guy that was in our home for over two years.  He was our first foster care placement along with his sister.  We were ready to adopt him, but because of beurocracy, we were unable to.  We are grateful that he is with his baby sister and the family is wonderful, but I'd be lying if I said we weren't sad.  We went into fostering not planning on adopting more kiddos, but God sure can change that!

We have been talking more and more about more kids.  As stated previously, we are in the process of adopting our little guy.  We have also expressed interest in a three-year-old girl as well as a five-year-old boy. There are some issues where the little boy is not available as of right now, but they know we are interested if that is the direction that things are going.

We believe that five is going to be the magic number for our family.  We're just waiting on the process.  Things cannot move forward for the little girl until they can get our home study done, which hopefully will be done very, VERY soon after the first of the year!!!!

We have talked to the kids about adopting more kids and they are both very excited, especially Caleb.  Over the last few days his numbers keep changing.  The other he told me that he wanted us to adopt 12 kids.  We told him that that was too many for our family.  Last night he told me that he should adopt 17 kids and that five could sleep on the floor in his room and five could sleep on the floor in his sister's room.  I told him I didn't think the State would be too happy with us if we had kids sleeping on the floor.  I also asked him if he would like sleeping on the floor.  He told me, "No.  Sorry!"  I told him it was okay that we just couldn't do that. 

Looking forward to 2011 -

I have so many things that I want to do in 2011, but I'm not going to call them resolutions.  Instead I'm going to set goals.

My first goal is to read through the Bible this year. I need to find a really good reading plan!

My second goal is to get healthy by losing weight.  I am going to take it in small goals, so that it does not seem so overwhelming due to the total amount that I want to lose.  My initial goal will be 10 pounds.

My third goal is to get organized.  I have been doing well this last week of getting rid of a lot of junk that we have accumulated over the past few years.  I am really trying to go digital and lose the paper, because that's been a biggest part of my disorganization.  If I can work at least an hour a day, three days a week on the clutter, I'll be very happy!

I also want to get in a better cleaning habit. I need to either do FlyLady or ome other cleanin gprogram, but it's an area that I've always been lacking!

I also have a goal to keep this blog much more updated!  I would like to blog something at least every other day!