Friday, March 6, 2009

Long entry, but a very good dose of what life is like with an Autistic child






Much has happened in the past week. Cole turned 8 years old on Saturday! He thoroughly enjoyed his birthday party on Sunday. He did awesome. He read some his cards and had such good manners when he opened his gifts. It was a nice way to end a tough weekend. We got back from vacation late Thursday night but we didn't get to see Cole until after therapy on Friday. Cole was pretty good that night, but Saturday was tough. Cole was both testing us and letting us know he didn't like us being away from him for 7 days. The party on Sunday was a nice way to "get through" a tough couple of days. 

And then came Tuesday....

On Tuesday I had to take Cole to the doctor for his check up and pre-op appointment. Cole has an extreme fear of the dentist and after our last attempt, the dentist advised us to put him under general anesthesia so we could get Cole the dental care he needs. So on Tuesday morning, we headed down to Cole's doctor. The plan was to go to the appointment, head back to Grandpa's, visit for a few minutes and then have Care Cab take Cole to MAC for therapy. The doctor appointment went really well. They got everything done except the vision and hearing test. Dr Sakkal greeted us with hugs and was so impressed with Cole's progress. 

I knew the change in routine would be hard for Cole. I prepared a visual schedule of what he should expect on Tuesday. I showed it to him several times, we read it out loud and I verbally kept reminding him of the day's plans. 

After we left the doctor, we were headed to my parent's house and Cole saw the Care Cab van waiting down the block. Instantly he threw a fit, "No Care Cab today. No MAC. Want to see Grandpa. Want to stay home. NO MAC TODAY!!!".  I asked Cole if he wanted Mommy to take him to MAC. He replied, "Yes, mommy take you to MAC". So I pulled up along side Care Cab, explained the situation and proceeded to turn around. I knew I could not let him go into my parent's house, for fear he would not leave to go to therapy, so I kept driving. When Cole realized I was going to take him to MAC, he flipped out in the car. He was screaming and kicking, crying and yelling.... for 20 minutes. 

I called his therapist to warn her that we would have a challenge on our hands. Her response was, "We need to follow through on this demand. We will get him inside." Cole calmed down a little in the truck, but when we got close to MAC, he became very filled with anxiety.... I mean VERY filled.

I pulled into the parking lot and Cole unbuckled himself and hopped out of his seat. He is good at this and will move around different spots in the truck so you can't reach him. His therapist came out to help. Cole was crying and yelling. He did NOT want to go inside. I tried for a minute to get him out of the truck. Cole then became aggressive. 

We are implementing a behavior technique with Cole whenever he gets aggressive. We have big problems at home with Cole's aggression. For about 3-4 weeks, we have been implementing the Stand Up, Sit Down technique (SU/SD). The technique is this: when Cole is aggressive to himself, others or property, we immediately tell him to stand up. He then needs to stop and stand up. Then we tell him to sit down. He then needs to sit down. We keep repeating this until Cole does one quiet stand up and sit down in a row, without touching anything. Until Tuesday, the longest it's taken for Cole to complete this has been 45 seconds. Furthermore, the aggression has gone way down. I can't remember the last time he hit Connor.  :-)

Now back to the truck... Cole got aggressive, so I immediately did the SU/SD. After about three minutes, we were able to corner him in the truck and physically remove him. Once he got out of the truck, I continued with the SU/SD while the therapist ran around and shut the truck doors. Cole was incredibly worked up. He kept getting aggressive during the technique and could not complete the SU/SD in the manner described above. So I had to keep going. This went on for at least 15 minutes... outside, in 20 degree weather, on the pavement. Finally Cole cooperated and did one SU/SD quietly. I then told him "Time to go inside Cole" and started to walk up the entry. Cole ran to my truck, which was thankfully locked. He then followed me, still crying and saying he wanted to go home. 

Once we got inside, I told Cole he needed to put his jacket in his locker. He hit me. So again, we did the SU/SD. This went on for another 7-10 minutes. Cole finally cooperated and we were able to get his coat off. At that point, the therapist said I should go. I said goodbye to Cole and walked out. 

I wish I could express how extremely difficult this was for me. It instantly brought me to tears. I have no problem implementing the SU/SD technique. In fact, I've been very pleased with the results and I love how neutral the technique is. It is very hard to see Cole so sad, wanting to be with me and me not able to console him or give in. My maternal instincts wanted to cuddle him, turn the car around and spend the day with him. I didn't want him to think I didn't love him. It's so difficult to discipline and teach a child who has the capacity to reason and understand. 

Five minutes after I left MAC, Cole's therapist called me to tell me I did an outstanding job. She also said I would not believe it if I saw Cole now. She said he immediately calmed down, turned the corner and went into therapy like it was any other day. The therapist said it was critical for me to follow through like I did. It is clear that Cole was trying to manipulate me. Even though his intentions were pure, he needs to know that Mom and Dad know what's best and he needs to abide by that. It was so hard and something I hope I never have to do again.

It sure was wonderful to hear Cole say, "Hi Mom!!" and give me hugs and kisses when he saw me after therapy. He still loved me. :-)


And then came Thursday.....

Thursday was the day of "surgery". Cole could not have anything to eat after midnight. Of coarse, he woke up for the day at 5:30am and went to the kitchen requesting Spaghettio's and tuna. I quickly diverted him onto the computer and put the plastic locks on all of the cupboards. 

We got to Children's West and Cole was excited to see a new doctor. He didn't know it was for a dental procedure. If he did, there is no way he would get out of the car. The staff was so friendly, flexible and well prepared. The facility was well equipped for children. Cole had a great time playing while we talked with the doctors, etc.  We tried to get Cole to take a small dose of medicine that would make him calm. He took an itty bitty sip and said now way. So we played until it was Cole's turn. We went into the induction room and right when Cole saw it, he froze and instantly resisted. He cried and wanted to go home. He put his legs on the door frame to prevent himself from going in. We had to overpower him and force him into the room. Pat sat on a chair with him and the two doctors quickly put the mask on Cole's nose and mouth. He fought it so hard... crying and squirming. It was so painful to watch. I could barely look. It took about 20 seconds and slowly he went to sleep. It seemed like it took forever. There is something about seeing your child in that state that fills you with udder sadness. It took me several minutes to compose myself, after they assured me he was breathing at 100% capacity and doing great. 

The staff let me clip Cole's toe nails. It was so great! For those of you who don't know, toe nail clipping is about as traumatic for Cole as the dentist. To do it while he was sleeping was a dream. His toes came out looking like he spent the day at the spa!

We then waited in the family area. After about 1-1/2 hours, the dentist came out to say Cole did very well and that he was headed to recovery soon. Cole did have a few cavities, but all-in-all, the dentist said he was expecting it to be worse. I'm just relieved he got a thorough cleaning, sealants and the necessary repairs.  The dentist took so much time talking with us. He is truly unique. He has been working with special needs children for 39 years. He told us he understands what we go through each day and called us both angels. 

Soon enough it was time to see Cole. They kindly took out all of the IVs before he woke up. We were in the room with him when he woke up. It was so nice to be there. He was out of it for a while and said his tummy and mouth hurt. He kept saying, "my mouth is sick" and he was picking at his teeth. I'm sure they were sore, despite the medication. He woke up asking for McDonald's- in true Cole fashion! He was emotional in the car on the way home but by 1:30-  he was playing with Connor and was back to his perky self.

And then there was Thursday night....

To top off the week, Cole decided to get up at least once an hour last night. I'm not exaggerating when I say we got up with him at least 10 times from 11p - 7a. It was a rough night. The Melatonin works to get Cole to sleep but unfortunately it does not keep him asleep. A good night with Cole is him sleeping, uninterrupted until 3am, it is no different than having a baby... sometimes it's worse. 

Some weeks are like this. We grow in times of challenge, I know I have this week. And please know the week wasn't all difficult. One highlight was Cole's response to Connor giving him a cookie. Cole looked at Connor and said, "Thank you, enjoy your ride!" I laughed hysterically thinking Cole must really enjoy the numerous trips to Nickelodeon Universe!

Have a great weekend everyone. Sorry for the long entry and numerous pics! 

*Isn't the birthday picture cute- look at that handsome boy.






3 comments:

Peterson! said...

Doesn't it always seem to be true that "when it rains, it pours"? I'm so glad you were able to get his dental work done! I did the SU/SD once with him and since then he's been very good about telling me with words what he needs. You guys are amazing parents! Cole could not have been luckier.

Jennifer said...

What a great post Shannon. Thanks for sharing and I'm glad to hear things went good at the dentist and he was able to get a good teeth cleaning and cute toes too! :)

laurenagrimson said...

I felt like I was reading about my own experiences with Ben reading this! I am with ya on the wanting to just go hug and kiss your child in those meltdown situations. It is really hard to force our instincts back and do what is better for them in the situation and "follow through". And Ben too has been sedated at Children's West..they really are the best!! But there is nothing harder than watching your child fight while they put that mask on. How funny about the nails...I told the nurse I wanted to bring scissors and clippers next time we are there so I can give him a "spa day" while he is out. LOL Anyway, your blog had me teary eyed...as it was all so familiar. Thanks for sharing!