Sensory Score Sheet 10 06 2009

10 06 2009 Sensory Profile

We have been working very hard to make progress in the area of sensory. You can look at these forms and see the improvement compared to beginning. We still have a great deal to go and I am behind a week or two entering information. Why?. I have the flu. YIPPIE....

Lou Ann has seen John at school a little bit, but she is planning on going November 5th to shadow him the entire day. Lakeside has been fantastic with working with us.

White Shirts and Mud Puddles

After school today, John came home for his two hour rest time in the monkey suite. Of course, mommy took a quick snooze. One hour later, no nap he was ready to go. I am pulling on the words of OC Therapist, he is craving input. This concept was a little to understand, so she gave me a very good book this week to read. I would recommend everyone reading just for understanding the concept. The weighted vest that John is wearing is working wonders at school and at home. At first, we were all like "NO" please do make him stronger but that is not the purpose or the case.

Today, I put on his vest and loaded him up to go to the field and let him run. It reminded me of when I was a child and played soccer in the mud filled fields. You know the kind of puddles that splash you in the face. There was nothing better than playing soccer in the mud and getting filthy, it was my favorite childhood past time. Been a long time though and I am now a princess with new tennis shoes.

We walked towards the mud and puddle and John looked at it like usual does not like to get different feels on him until he is sure of it. I decided let's do it, took me a few moments to forget myself and run. Lou Ann wanted sensory input here we go. My new tennis shoes and white shirt I ran through the mud puddles splashing and jumping and he was laying on his face forgetting all of his issues. This went on for 45 minutes.

This is the part that really got me. Forgetting what people think and that I am an adult, we were having a blast. Every car that went by stopped or slowed down to look at me. They were picking there children up at the daycare. I was thinking to myself, go ahead and look I am having a blast and so is John. Is was more the look like "Oh, my GOD, what is she letting him do". You do have to understand we were soaked head to toe in mud and I thought it was great. Mission accomplished. I managed to give MONKEY some sensory input and make a few people think why do I spend $20 for a movie when I can jump in the mud for free. LOL

We made it to the pavement and John fell to the floor and sat down on the cement. He then realized that his feet were wet, his body was soaked, he was exhausted from running with a weighted vest and had that look like...."Mamma, you tricked me, I am tired let's eat and get a drink".

Today turned out to be a great day just had to remember it does not matter what people think, you don't have to pay to have fun, and it does not matter if I am out of shape the only way to get in shape is PLAY PLAY PLAY........................

Did he break anything?

I am not a doctor, but I feel like it because I am on call. Yesterday, the school called and John just had enough. Yes, he was tired, he was banging his head, he was ready to go. Why? Who knows, since this is the kids that never sleeps. I got in the car and rushed two minutes to bring him home. All of my good work, down the drain in three hours and now reason why. I let him fight himself for a while by banging his head and then finally he went to sleep on the floor.

Today, I dropped John off at school at 9:00 in hopes of some work time. The teacher requested the weighted vest, since it seems to help John stay focused and not so out of control. I am still not sure how this is helpful except making him stronger and even more difficult to handle. It seems to be working, so we will go with it. It is very helpful during the transition times from the playground to the class room.

So, in attempts to get two solid hours, I left the school went and got the vest and returned to the school. Able to sit down and work on some accounts receivables, just when I was ready to focus RING> RING>..

I don't even say hello anymore, my response is did he break anything? At that moment, I realized to any other person this might sound bad, but I truly want him to learn the threshhold of pain and that won't happen with a mommy who comes running.

They noticed that he had broken skin and a good bite out of his face, but they were not sure when or how it happened on the playground. Basically, it boils down to the same issue we have been having, he does not and barely feels pain. He did not cry, stop playing, or even acknowledge there was a bite, until Amy cleaned it and kissed it. So, this is where the concern still comes in and hopefully, this vest and the brushing techniques to include heavy work, per lou ann, will be helpful.

Either way next month I am calling to see what type of evaluations we can do to learn more about this high threshold, so he does not hurt himself or others.

Leaving to pick him up for Speech Therapy

6:00 AM Slap In The Face

How do we teach him to wake me up. His ritual is now to open the door to his monkey suite and slap me across the face. I look over and here is this curly top kid smiling at me and saying ANNIE. How is it possible that he can wake up before the sunrise and have Annie on the brain. We are now downstairs at 6:00 am and he is watching Annie and dancing in the kitchen. I guess it is better than listening to Barnie. I am going to post his singing tomorrow. Anyone have any ideas on a new musical let me know, but I don't think it is happening.

Right now has has the broom and he is trying to do the dancing. My only point is how can he have it on the brain at 6:00 am. He had it on the brain at 4:00 am yesterday. WOW! it amazes me. Also, need to work on waking mommy up without the slap across the face.

We have occupational therapy this am, so will let you know how that goes.

Manners

Ladies and Gentlemen, it is official he said the word "PLEASE". I am positive he does not know what it means but he did repeat it.

TANEILL - SPEECH THERAPIST- SAY HELLO

Today, I rushed home for john to meet Taneill. Just for the record, the coolest, down to earth person I have met in Jackson MS in the past ten years. Of course, not any cooler than Lou Ann the Occupational Therapist. Today, we were talking about this blog and getting ready to start therapy and guess who is asleep in the chair. Yes, three hours he has been asleep. This is what happens when he gets up at 4:00 am on Sunday and plays all day Sunday.

So, we were able to strategize and visit. What fun. I had adult time. Today was a success. I made it to work, John made it from the playground to the classroom, and we actually made it to the car. Yes, he is exhausted but I will take the peace when I can.

This week we are going to learn the definition and say the word "MORE" so he can be less frustrated communicating with me.

Is the folder empty or does it have a note?

I was rushing to get to school first because my monkey is yet able to understand the importance of following directions. For example, the car pool line is just not a place he is going to wait. So, I pulled up to the school at 1:15 and started my way into the building. Funny thing is most people don't elaborate on their self talk, but since I have chosen to blog my daily routines. [ I guess my inner thoughts are important. Why? I am not sure, but if will help me and others understand the daily stresses we go through then I guess it is important.

Not only have I been introduced to the world of toddlers, I am now embarking on a journey of is it s two year old reaction, was there noise, did we change the routine, is there something we did different, maybe daddy drove him to school and did not sing the ANNIE song we sign every waking moment when he won't focus, maybe it was the lights blinking, maybe he is just a bully, maybe he better be autistic or he is going to get a good spanking, did he not get enough breakfast, did he hide any food in his pockets, did he run across the room and beat on his future wife for no reason, did he decide today is the day he was going to eat in the trash because mommy never feeds him sugar..hmmmmmmmm. Is today the day he is officially going to get written up, yes, I have learned there are official reports called Incident/Accident reports. What do you do?

Ok, now all of that went through my brain in thirty seconds flat, I cross my fingers and get to the door. There is he is waiting for me with his sweet smile and excitement. I want to believe it but I know the other side to him. Within a moment flat he went from sweet to a bully. He turned and pushed the boy next to him who was trying to get into his space. He then turned around saying kissy kissy (yes, from annie). The teacher comes over for the normal run down. The only thing I care about is do I have a note. LOL.

We struggle daily with lunch bunch. Besides the fact he won't eat much of anything, food can't touch, the environment has to be pleasing to him, he has to move his chairs where he likes them....who knows it is an ordeal every day and it depends on where he wants to sit. We move his table at least three times a day. Now, the good news we have learned to sit and use a spoon and fork. This is huge improvement. He is placed in the highchair with the others at the table but he still does not want to eat. When his mind is focused on one thing forget it. However, he has learned real quick what these things are mommy does let him have except for holidays.

Today he had a cupcake and he ate it like he was a starving child, like I am told. Low and behold he managed to sneak away and try to get it another one out of the trash. For a flat moment, I had the horror of "They must think I don't feed him" then I shrugged it off, truly everyone should understand why the child who got up at 4:00 am Sunday, no nap, and would not quit running until 10:00 pm is NEVER GETTING SUGAR.........LOL

Ok, so we are passed the eating out of the trash, we make it to the hallway I let him walk independently. Here we go run, left turn, and tries to escape me. You have to understand my entire weekend and Wed and Friday is driving and waving and saying good bye to the school. He loves school, he loves being there, and he does not understand why we can't sleep and eat there. I am working on a picture board that should help in daily transitions but I am waiting to take some pictures tomorrow. Ok, I chase him down the hall another teacher says I am a good momma. I am not sure if it is pity or compliment, but hell I will take any of it. My brain is saying patience, transition is something he struggles with and I am not carrying 35 pounds over my shoulders anymore.

Now we make it to the hall way. This is great! Right in front of the door he plays limp boy, you know that great trick where we lay flat and nobody can pick up the child. Not only do we lay flat we start the punching, kicking and screaming. I am not a big person on public display of affection, but now I am forced to be part of it. The only way to calm him at all is to lay on the floor with him. I have become a master at blocking the punches. This took about 5 minutes and we managed to get the the transition of LOVE LOVE and hugs. That is what we say when we try to move him past his meltdowns. Ok, we made it we are on our feet.

I state the command "run run" and squeeze his hand, but I know it will only be until the door and we will start the banging. Yes, here is comes in front of all the cars. Finally, we get to the stairs and we make it to the car. How? I have to sing the song ANNIE "Tomorrow" to get his attention and then I have to make up words to it. For example, go down the stairs, see the black truck, run run, we will have some fun, at home. Any time I need him to focus and get out of the meltdown generally have to sing it in words to him and it works if it is to the song TOMORROW. This can be applied to any situation, but let me tell you singing ANNIE Sunday am at Kroger is not FUN. It is 6:00 am and I am singing to him at KROGER to get him to follow directions, talk about tired self esteem issues. I always wanted to be on Broadway, but not this way.

Naptime: I tried everything it is not happening today. He watched Annie and ate his lunch, then went upstairs and the only thing that would calm him today is his IPOD Touch for at least thirty minutes. He was not going to have a nap. After I put him in his make shift room, my closet, yes that is what I said.....

We have stairs and he can break through the gates and climb them, so I spent last weekend cleaning out my closet - pretty big- and putting him his toddler bed in there and decorated it with monkeys. I call it an adjoining suite. It gives me peace of mind while we are coming up with solutions for the balcony. So, today he banged his head for thirty minutes straight. I left him in there but it was to the point of sheet rock breaking. So, I had to let him out and he climbed in the big bed to spread out and play his IPOD games. I was determined to make him rest and learn nap time. I think he put me to sleep and played games for an hour instead. He slapped me across the face when his IPOD battery died, so that his how naptime went.

We went and had dinner and DADDY came to the rescue and let me go to YOGA. Daddy puts him to bed everynight. So, tonight the ordeal was less time, no IPOD, and only 45 minutes of kicking and screaming but in the end we won the battle tonight. He is in the monkey suite sleeping and I am getting ready for the morning ordeal.

Never take for granted having the ability to be flexibility. I am trying many techniques to change up his routine, a little at a time, but it is all over if he does not get up, stretch, shower, play I-pod 5 minutes, watch annie, eat banana and waffle, and carry his bag to the car. He goes into complete meltdown mode and starts hitting. The good news, we have managed to break the SONIC APPLE SLUSH habit. AMEN!

Thanks for listening to my thoughts, tomorrow is speech therapy so more to come......

Remember, fingers crossed, EMPTY FOLDERS EMPTY FOLDERS ----no news is good news in the world of mommy with

Baton Rouge Clinic

Attention: To all parents who can not get into UMC for six months, she is accepting new patients. If you don't have a ride, call me and I will take you. It is ridiculous that children have to suffer and wait 6 months for a 15 minute appointment. She is a fantastic doctor and it only took me two weeks to get an appointment. THANKS TO UNCLE PAUL!!!!!!!!!

Lalania K. Schexnayder, MD, PhD

Specialist in Pediatric Neurology

7373 Perkins Road
Third Floor
Phone: (225) 246-9240

Dr. Schexnayder is currently accepting new patients.

It is Sunday evening and I am four weeks behind starting this blog. There is so much to write about I am not sure where to start. The main reason we are starting this blog is our little "monkey" John is working very hard to carve his own path in this world. Before I tell the entire story, the point of this blog is to follow his progress in speech, occupational therapy, school, his special teacher and the new 24 hour attention MOMMY is giving him.

About a two months ago I was told "we should have noticed this a few months ago" he really needs to start speech and get testing for AUSTISM. Keep in mind, I just got him out of the hospital for dehydration and strep throat. I took a deep breath and got focused on what we were going to do to help him. We had our thoughts that things were going on a year. We had several tests done. The one thing being he would never come to us, hug us, kiss us, or look at us. It was easy to chalk it up or categorize it as he is a loner like his parents. However, it became more noticeable. In addition, to some very repetitive behaviors and sensory issues, he would not stop banging his head. It was not the typical head banging that I received literature on from the doctor. This was distress......

The next logical step would be to get the referral to UMC, in my humble knowledge the only place here you can go for developtmental pediatrician. Yes, my doctor told me I had to get him there because this is the important age for speech, especially before he is three. At the time of the doctor appointment, he may have mumbled 7-10 words. That was stretching it. I was thinking no big deal, I have the referral just call and get the appointment. I was very wrong. After spending half a day on the phone, in total disgust due to no results, I was informed it would be at least December 2009. Yes, you hear me right 6 months from now.

HELLO! He needs help now and needs to learn to talk and in my mind it is just pure neglect to let him go six month and keep my fingers crossed that he grows into his voice. Yes, that was suggested to me. Luckily, Brian got on facebook, called friends, and we were able to locate a Pediatric Neurologist in Baton Rouge, LA who was able to see him in two weeks. We packed up the car and headed that way. One hurdle. down.....

Second Hurdle..........I am told he needs intense therapy in several areas. I was thinking who in the world can afford this 3-4 days a week. I was reading everything I could find and came across a program in Rankin County called First Steps. They take children who qualify until they are 3. Of course, he had to be tested and be at certain level before he could be accepted in the program. Not only did he qualify, he was assigned three therapists from the same non-profit organization. On top of everything, they come to the house and work with him in his environment. I was so excited............of course, easier on me.

At least we have one thing left in MS that has not been cut out. Most programs I call about have been discontinued due to lack of funding. This is our children and their future, I was never faced with this challenge personally or through friends but from what I can tell, as a parent you are limited in resources.