Friday, March 11, 2011

Huge update on Jayden

First thing's first...Jayden hasn't had any visible seizures since JANUARY!!!! PRAISE THE LORD!! We had a followup visit with his neurologist on last week and it was a 5 minute visit! That's just how well he is doing :) We discussed the fact that the reading from his 24 hour EEG was, indeed, completely lost due to a hospital system failure. However, she was able to check with the nurses and they reported no seizures. The hospital is going to give him a FREE repeat 24 hour EEG, but his Dr said that since he's doing so well she wants us to hang on to that and we will use it if his seizures happen to return. But for now, she scheduled him for a sedated EEG next month b/c she still needs to see for herself where his seizures are coming from.

On the medicine front, he is almost completely weaned off of ALL unnecessary medications! He is currently taking 2ml of Trileptal in the AM and 4ml at night. This is a tremendous decrease from the 9ml twice a day that he had been taking for months! We have certainly noticed a dramatic difference in his home. At home, he listens so well. Responds with "Yes ma'am.", (still working on yes sir, although he does say it when he's playing military with daddy, lol)and "Ok mommy" and "Ok Daddy." At home, he talks better. Last night he looked in his shoe and then ran from it and screamed "Mommy, a spider!! It's in my shoe!" At home, he is more calm. He can actually sit still and watch a movie without swinging his legs or beating on something the entire time. Last night, he picked out a book to read before bed and it was a Berenstein Bears book. For ages 5 and up, so a bit long. However, he sat through the entire story and didn't wiggle or interrupt ONCE! I was actually preparing myself for him to get bored and when I got to the end I exhaled and congratulated him! He was so confused over the celebration, but last night was epic. LOL! At home, he doesn't have tantrums anymore. Barely gets timeouts. Anything he gets in trouble for is usual 4 yr old boy stuff like not cleaning his toys up or talking back. Also, he is sleeping better!! For the longest time, Jayden was waking at 6:45, as soon as the sun came up. For many kids, this is the usual and I understand that, but Jayden has been sleeping until 8:30-9 since he was an infant. Waking at 6:45 (and many times in the middle of the night as well) was making him very cranky and tired, which added to his behavior issues. Now he is back to sleeping until 8:30 and I'm sure that has had a positive impact on his behavior. At home.

In public, it's still a struggle. Actually, I take that back. It's not in public because he does absolutely fine in crowded stores and he surprised us all on Fat Tuesday in the huge crowds. He doesn't do well in SOCIAL situations. He does not understand how to behave around large groups of children. So of course he is still getting into trouble at school and anywhere else there is a large amount of kids. Wednesday night, my husband brought him to my job while I was at work, to let him play in the childcare room. My husband didn't expect Jayden to act out b/c he had been doing so well. When Jayden got there, there were 14 kids ranging in age from 5-11. They were all over. Jayden does not quite know how to play with other kids, especially bigger ones. other than rough housing. And he gets too rough. He immediately jumped on top of one of the older kids. Then proceeded to grab a toy power tool and "stabbed" the boy with it. The older boy found it hilarious (I guess it is funny to see a little 4 yr old play so rough??) so he laughed and Jayden continued. I pulled him away and reminded him to play gently or he'd have to go home and Jayden said "Yes ma'am" but immediately went back to the boy and karate kicked him. I called my husband to come get him, 5 minutes after dropping him off. It was frustrating for both of us. I later asked Jayden why he didn't listen and he told me "I don't know. I sorry mommy." That hurt me, b/c I know it was the truth. That night, anything else going on in my life was pushed aside. My mind went directly to how I can help Jayden and it won't switch gears until I am able to help him.

I researched behavior charts. I wasn't able to find one specific enough for Jayden and one he'd understand and be excited about, so I made my own:

Jayden LOVES to swim. Summer camp at my job starts at the end of May. They swim 3 days a week. It would be very fun for him to attend and very convenient for me as well, to have him right there at work with me. However, there is no way he can go if he's constantly hurting people and not listening to the counselors. My goal was to get him to understand that in order to go to camp and get to swim all summer, he has to remember to play nicely and to listen to the counselors. On days that he hits, he gets a sad face and he has to remove one of the 4 swimming pictures. On days that he doesn't hit, he gets a smiley face and gets to replace a swimming picture (if any are missing). He gets really excited about the chart. There's one major problem though. It's not going to work for him :(

After researching behavior charts, I also downloaded The Explosive Child, by Dr Ross Greene onto my Nook. I immediately started to read through the first few pages, but as each page described my child to the "T", I couldn't put it down. I remember getting to a certain page and reading something that took my breath away:

"Parent: 'We've talked about this a million times...WHY DON'T YOU DO WHAT YOU'RE TOLD? WHAT ARE YOU SO ANGRY ABOUT?'

Explosive Child: 'I don't know'"

excerpt from The Explosive Child

Just hours earlier, I'd had the exact same discussion with my 4 yr old and I rec'd the exact same response. Greene says in his book, "Children do well if the CAN." He also went on to explain certain skills that are needed in order to go on with each day without being extremely frustrated and explosive all the time. Children with developmental delays (like Jayden) lack many of these skills. Executive skills, language processing skills, emotion regulation skills, cognitive flexibility skills, and social skills. Jayden is lacking Take executive skills, for example. Executive skills include the ability to shift from one mind frame to another. This occurs when you shift from one environment to another. Jayden does not transition well at all and this is why. The book explains a child going from recess into reading class. The child who lacks executive skills will still be loud and unruly in reading class. Totally Jayden :( We already know he is delayed with language and has problems with emotion regulation, cognitive skills and social skills. Since they all are SKILLS, they need to be TAUGHT. Not medicated to make up for the lack of skills, and not rewarded for days that the lack of skills didn't hugely impact the child's day, giving you a false security that your child is "learning".

I haven't gotten to the part where we "teach" Jayden these skills, but I do know that we will need the help of a private child psychologist b/c the one at school is definitely not helping him much at all (I'm also planning to place him in another school in August). My hope is that the psychologist will be willing to watch Jayden in different social interactions and help us to TEACH him the skills he lacks. I don't expect him to learn all of this overnight and I do expect him to still have problems going into summer camp (if I can even trust him to attend), but I do know that I won't stop until he is well on the road to success.

As far as the behavior chart above...I like it and Jayden is SO excited about it, so we will still use it. I haven't read yet that it will hurt anything, just that it won't help him b/c he simply LACKS the skills to do well in social situations. It's not that he doesn't want to do well, it's that he CAN'T. So I have to remember that. But if I can reward him for good days, I will. I am, however, rethinking how I'm going to handle taking away the swimming pictures. If it seems to upset him too much, I will re evaluate. He can't help it and he knows it. He truly wants to do better. Poor thing. But he knows that his mommy will not stop until he is able to do better.

Mommy loves you Jayden :)