5 year check up

Christopher had his 5year check up yesterday.  Thankfully he didn't need any shots! The main concern of coarse was his behavior.  He is still very defiant and argumentative.  He can be very aggressive and violent.  He has food issues that have gotten worse over the past month.  He is still having trouble sleeping, but now worse than ever.  He asks every night when its going to be morning, and complains that he forgot how to fall asleep!  It takes him 2 to 4 hours to fall asleep.  We are considering medication, but first we are going to try some vitamins for a month and see what happens.  I am supposed to get the following: focus factor, Behavior balance DMG, and Bioglan kids smart.  I am thinking about also getting melatonin to help him sleep.  I have always wondered if he slept through the night would his behavior be better?  My guess is yes. If I don't get enough sleep I can behave like a monster to.  The doctor says that many of the problems we describe are sensory and wants him to go back to Occupational Therapy (OT).  We did this before with little noticeable improvement, but that was almost 2 years ago (I think)!   We are also going to go to a psychologist.  The hardest part is how are we supposed to respond to him.  We don't want to do harm (physically or mentally).  However, if we don't do something soon eventually he will be to big and we won't be able to control him.  Now I often have to pick him up and carry him to his room.  I have had to use all my strength before to keep him from attacking his sister! 

Now it sounds like he is a horrible kid.  He is not! He is a very smart and loving person.  He just cannot help it.  He gets upset, frustrated, or angry and cannot control how he acts.  He loves to help and can be very loving.  He usually isn't gentle but that isn't on purpose either.  I always say he is basically 2 kids!  My angel and my demon all in one, but you never know what your gonna get!  And they can switch on you in an instant. 
P.S.  If any one has any experience with these medications or any advice please don't hesitate to leave me a comment!  At age 5 we really don't want to start medication.  I don't think the vitamins could do any harm, but I guess you never know.  I'm not sure if any long term research has been done on them.  I am just gonna trust my doctor, because I do trust him, and I am in way over my head! 

Sensory Diet

It has been almost 3 weeks since Tophers OT (occupational therapist) sent home his sensory diet plan.  That is a program she has designed for me to implement at home.  I am supposed to do this 3 times a day! 

Topher's Sensory Diet is as follows: 

    Step 1: Vestibular/Movement input:  stopping and starting frequently as well as changing speed and direction!  spinning, crazy swinging, jumping on trampoline, running in circles,  ... until he stops seeking additional input

    Step 2:  Active Proprioception/Heavy Work:  pushing, pulling, play tug of war, animal walks, wheelbarrow walk.....

    Step 3:  & Step 5:  Passive Proprioception/Deep Pressure:  massages, sandwich game, joint compressions (we call them boom booms), vacuuming (he is the vacuum),  weighted backpack...

    Step 4:  Tactile Input/Touch:  brushing, finger paint, play in water, digging in sand,beans, corn kernels, etc...

    Step 6:  Skill:  functional task: homework, following directions, potty time, shoe tying, fine motor tasks...

We have meet 2 huge obstacles with this process.  The first hurdle is Topher's sisters!  They are extremely jealous of the extra attention he is getting, and naturally want to be involved to.  They actually are more cooperative with the therapy than he is!  They love the joint compressions, brushing, vacuuming, and sandwich game. 

However, this makes completing his sensory diet a struggle because not all activities are easily done with 3. Especially since Evie and Topher are close in age but Ally is only 1! It takes a long time, and is extremely exhausting (for me)!  It is also A LOT of work finding and setting up things that all 3 can do.

   The second problem is Topher himself.  He has become very non-compliant.  At first he loved it and participated.  Now he doesn't want to at all.  He only wants to sit in the toy room and play. He yells "I wanna play. I don't wanna do nothing...nothing...nothing..nothing....I wanna play!"  Lately I tell him if he doesn't do it I'll take his toys away.  It is supposed to be fun, so it helps.  I feel horrible.

 His play is very fascinating lately too.  He will have the dinosaurs and doll house out.  They will all be playing together.  He plays pretty good with his 4 year old sister, but doesn't tolerate the baby very well. She knocks down his stuff and takes stuff away.  Topher cannot handle that, and responds very aggressively.  He also insists that Evie (older sister) play with him all day long.  The poor girl has to be exhausted.  He will cry if she won't play.  This is a new behavior over the last 2 weeks!  I'm not sure what to do or think about this, but it is getting to be a problem.

Unfortunately, to prevent melt downs he needs to do his therapy.  It's a pain in the butt.  Most days I am not very successful and feel really bad about it. 

Topher first Occupational therapy appointment

We were having a nightmare of a day, and I thought it was gonna be hell at his appointment.  He proved me wrong.  I was thinking who is this kid.  He was actually really good!  They did put him in a turtle swing in the beginning for maybe 10 or 15 minutes.  He was an angel after that!  I gotta get us one of those!  I have no idea where we would put it, but that might be a worth while investment.  I was amazed at how calm and well behaved he was after that.

They also put him to work with weights on his ankles and wrists.  He had to carry heavy balls around the room, and do various tasks with them.  He loves doing work at home to.  He did really well.  Looking back at the day after his therapy he was relatively good.  He did have a couple instances but those were more due to him being very tired.  He woke up at 4:40 that morning!  He is seriously crazy, who gets up that early!  I'm joking.  I have never been an early bird.  He usually gets up around 7 or 8.

So our first experience I would have to say considering everything was very good.  After a few weeks she will have a home plan for us and hopefully we will see some improvements.

Starting therapy!

Well at Topher's 3 year old check up our pediatrician recommended occupational therapy (OT) and Behavioral therapy.  We procrastinated starting the therapy, because of the concern for the cost.  I am still very concerned of whether or not we can afford the therapy.  However, that concern is now overshadowed by my fear of whether or not we can afford not to have him in therapy.  I guess I will never know until we try it out.

He had his initial intake appointments this week.  The OT wants to see him twice a week.  "Just great!"  My reaction!  Even more stress, more gas money, more everything!  Plus, my insurance is giving me a run around of what and how they cover this.  Basically, I am being told they won't know until they process the claim!  Even thou the therapist called with all the codes they needed to process a claim.  I can't get a direct answer.  I understand that to some point.  But come on!  I need to know what I am looking at here for costs.  If its to high I don't want to find out after I have a bill I can not afford.

So here we go trying it out!  Praying it helps and is worth all this stress. 

when Tophers attack

I should have known something was up.  Topher came downstairs and said "Mommy, Evies awake."  I told him they both were supposed to be in bed and to go back to bed.  Then I heard Evie yell.  She yells for me at night because she isn't allowed to get out of bed unless its an emergency. 

I started to go upstairs when I realized she wasn't yelling she was screaming. I ran upstairs and found Topher on top of Evie hitting her.  He was hitting her because she took of her blankets.  She was hot and took off her blankets. Topher took this to mean she wasn't going to bed like she was supposed to.  So when she refused to put her blankets on he attacked. 

Life changing day!

I got a new mattress from my moms today. It isn't new but ours is horrible so were gonna try and see if it works for a while.  We'd buy a new one, but we just got a new car, and when we get a new mattress I want to go all out! I want the best mattress money can buy even if it takes me 4 years to pay it off.  My hubby has serious back problems.

Anyways this is way off the topic. Evie went upstairs because she wanted to put the pillows back on my bed.  Topher went upstairs because Evie went upstairs.  I have no idea what exactly transpired.  I was still downstairs.  I didn't think anything of them being up there alone.  It wasn't for long, and I was coming up soon. 

I heard screams and crying from both kids.  So I ran up.  Evie was on the floor with one pillow under her and one above her head holding her hair down.  She was hysterical, and stained with tears.  Topher was behind the pillow that was over her hair.  It was slightly on his lap.  He was crying to.  I immediately asked what was going on.

It was difficult between all the hysterics to understand, but after a few moments I got the idea. Topher had apparently held the pillow over Evie's face!  She said she couldn't breath and was scared.  I asked Topher, why he was crying.  He said he was crying for his binkie. 

Apparently she was trying to put the pillows on my bed and he was trying to take them downstairs.  So they fought.  My son is only 3, but I have had difficulty holding him back when he is after something. The boy is a tank.  So she didn't stand a chance. 

This was very traumatic for Evie because about a half hour later she just started crying.  I asked her why she was crying.  She said when you love someone sometimes you cry.  She is 4!  Where is this coming from I thought?  I just held her and told her I loved her.  She said she was crying because she loves me and her daddy.

Approximately 30 minutes later I was putting them to bed.  Evie started talking about the incident with the pillow. So I asked, "How did it make you feel?"  She said "scared" "I thought I had to go to the hospital and then the clouds and I would never see my mommy and daddy again."  She thought she was going to die.  My daughter seriously thought her brother was going to kill her this evening.

After she said this I hugged and kissed her.  My son then said, "I was killing her."  I know he has no idea what that really means, but still I was shaken to my core.  I said "No we don't kill anyone.  It is against the rules.  It is absolutely unacceptable behavior. Promise me you will never put a pillow on someones face again."  His response was "promise me you wont hit, kick, or spit."  These are all rules we have posted on the fridge.  I constantly tell him when he breaks them that you don't do these things because they are the rules and point to the fridge for a visual. I think that is why he brought them up at this point.  I said "Ok I promise now you promise me too."  He said "trust me"  at this point in the conversation I was floored!  Who am I talking to I thought?  I said "promise me you won't put pillows on peoples faces any more"  He did.  So I hugged him and said "I trust you."

Then I realized we need to make big changes here.  No longer will Topher be allowed to play any type of violent games.  I removed his army guys, toy swords (he has 2 from medieval times), toy shield, and one hand craved wooden toy gun.  We are gonna have to be careful of what he watches.  He loves transformers, but even the cartoon is really violent.  We are gonna have to watch how he plays.  He is not to be alone with either of his sisters.  I don't know what else to do.

Know don't get me wrong.  My son is very sweet.  He is rough and tough.  He has sensory processing disorder.  He doesn't realize how strong he is.  He loves deep pressure, and bumping into things.  He doesn't understand that things like that hurt others.  He also has a high pain tolerance.  Therefore doesn't understand that things hurt others because it doesn't hurt him. 

Also he does not seem to understand the emotions of others.  He is very caring and worries about others.  He just doesn't seem to get the social cues from people to get whats going on.  I don't know if that really makes sense.  I'm trying my best to explain it, but I don't understand it fully either.  I do not think he realized what was going on, and the ramifications of his actions.  He doesn't seem to understand consequences at all.  He has severe impulse control issues as well. 

He is a good boy but very challenging (aka a hand full).  He is supposed to be in occupational therapy and behavioral therapy, but we can't afford it.

Also,  A couple weeks ago he was trying to hold her head under the water in the bath to. I feel like a failed mother.  How did things get like this?  Where did I go wrong?  What do I do? How do I fix this? 

Whats going on in his head?

I feel like I am running into a brick wall. We know that something is off with our 3 year old, Christopher AKA Topher.  He does many odd things, and doesn't get many social concepts.  Getting an actual diagnosis so we know how to handle him has been impossible.  The pediatrician says "there is definitely something there" "psychological not neurological".  That is the closest to a diagnosis we've gotten. 

We saw a psychologist at the Children's Hospital in Chicago.  Great hospital, but this was ridiculous, and a waist of time.  We came in once a week and sat in a tiny tiny TINY room. Where she asked me questions, listened to me talk, and somehow watched Toper.  How can she assess him in such an awkward place? He wasn't his normal self.  She gave him a couple of diagnoses Oppositional defiance disorder (ODD), middle child syndrome, and sensory integration disorder.  My son gets tons and tons of attention.  He does not act the way he does to get attention.  In fact most of the time he yells at me to leave him alone, and screams to not be touched or hugged!

Another psychologist saw him in our home from a government sponsored program called first steps.  They also provided speech, occupational, and developmental therapy once a week as well.  This psychologist was to eval Topher for autism.  The pediatrician suspected high functioning autism.  She said "No way is he autistic.  He is way to social." 

The school evaluated him to see if he qualified for services in developmental preschool.  They said he is way to smart.  He doesn't qualify.  Just because he is smart doesn't mean he doesn't need help. He is super smart.  However, has trouble processing things.  He doesn't understand other people and their emotions or social cues at all.  He accidentally head butted me today I yelled "Ouch!" He bust up laughing.  Either he didn't get it, or he likes hurting people. 

The pediatrician and psychologists both agree he has sensory integration dysfunction.  He needs both occupational and developmental therapy.  Our insurance covers them but leaves a 20.00 copay.  That is 40.00 a week plus costs of gas.  I can't afford it right now!  I don't know what to do.  There has to be something.  I feel lost and like a failure to my son.

Topher, Sensory Integration Disorder, Update

Well I am so upset.  Topher aged out of first steps.  A government program where he was getting weekly Occupational therapy OT, Developmental therapy DT, speech therapy, and twice a month psych visits.  I wasn't worried at the time because I thought he would go to developmental preschool through the local school system.  Well they said he doesn't qualify "he's to smart!".  What the heck does being smart have to do with needing special help or not?  He still needs help.  I honestly think the teacher just didn't want to deal with him, but I can't prove it.  So the doctor wants him to get OT and DT privately.  He does need it, but it will cost me 40.00 a week plus gas.  I can't really afford that, but can we afford for him not to go? 

He's a very good kid, but different. It's often like he doesn't even hear you talk to him or can't process it.  Sometimes he is so wild and out of control, and other times he just wants to lay around and watch tv all day!  Sometimes he is loving and polite.  Other times he is demanding, rude, loud, obnoxious, and will cry if you touch him.  You never know what your gonna get.  He still has melt downs quite frequently, and often without any warning.  He has gotten better with his sisters.  He will slide on the floor into Ally (she's 9 months) knocking her over like a bowling pin.  He will hug her (squeezing quite hard) then twist and they both fall to the floor.  He squeezes her face (this usually doesn't hurt her but she doesn't like it either).  It's like he can't not touch her. 

It just seems to be always something. He is truly exhausting (on the bad days).  Other days he is the sweetest boy on the planet.  It is almost insane how fast his moods can change!  He is also extremely difficult to discipline, and I absolutely hate to spank him. When we had kids we decided we didn't want to spank our kids, and I feel like a failure for having done so at times.  A couple times it was a reaction. 

He has kicked me in the face so hard during diaper changes that he has given me migraines, these were on accident he is extremely sensitive genitalia.  He often can't stand to be even touched with a wet wipe for cleaning or even putting ointment on.  But He doesn't seem to get the message if he has to pee until afterwards so potty training has been a bust.  He will also sit in a wet diaper until it leaks.  I have to check him frequently and even when he's wet he will deny it! 

Once he was extremely hyper for whatever reason and accidentally knocked me out.  I was sitting on the couch.  He had both hands on the couch and was jumping up and down.  I was talking to him, but he didn't seem to notice.  Usually, when he does this I grab his shoulders and make eye contact.  I tried he jumped and hit me in my temple.  Everything went dark and I crumbled to the ground.  I opened my eyes, and I was crying with a horrific headache.  It took a minute to realize what happened.  Evie was standing over me very upset and worried about me.  Topher was laughing.  I yelled so bad it scared him "Go to your room!"  He ran to his room.  Thank God, because I have never hurt my kids, but I knew if I spanked him at that moment we would all have been in trouble.  I needed a few moments alone. 

He is very smart and at 3 tested for speech at a 5year old level. He has very advanced pretend play.  He can't grasp emotions of others.  He doesn't get consequences for things.  He does what he wants or needs to in that moment with no thought for the future.  He lines his cars up all through my house, and does other bizarre things when he plays.  He doesn't usually get mad if I move the cars.  It depends on why I moved them and if he agrees with my reasons for moving them.  If he thinks he needs to do something you have to let him do it even if he can't.  For example if he wants to open the door, you have to let him try, and wait for him to ask for help.  Otherwise he will have a full tantrum, and its not worth it!

Life with my son is hard to explain because he is a very good kid.  He just doesn't get it.  He just can't control himself.  He is just Topher. 

fighting

The fighting between my kids never stops. Many times Evie is simply the victim of Topher's inability to control his impulses, and understand what hurts and what is play. However, on occasion Evie has instigated the fight herself. Whether she is just getting pay back or deciding to take control of a situation herself she has gotten herself into a fair number of scuffles.

For instance tonight I ran to her aide, and quickly grabbed Topher off her back before he had a chance to bite into her. I had to then chase him before I could put him into time out (which doesn't work, but gives Evie the feeling that justice has been served). On my way with him to time out Evie said, "I take his binkie!" Which is a big "No No!" Even for mommy.

I asked, "Why did you take his binkie?"

Her response made me bite my tongue to keep from laughing. She matter of factly said, "I take his binkie. He naughty, I take his binkie!"

I could not believe it, and once I was sure I would not laugh or show her my smile. I very seriously said, "Mommy is the boss. If he is naughty tell mommy, and I will take binkies if they need taking!"

For now I am the boss, but she is so independent I know it won't last for long.

Topher, Sensory Integration Disorder, Update

As you may know that my son Christopher was diagnosed with sensory integration disorder earlier this year. He has occupational therapy, developmental therapy, and behavior therapy once a week for an hour each. However, he doesn't seem to be improving. He's getting more aggressive as he gets older. He doesn't seem to mean to hurt people, and doesn't understand when he does.

He has hurt his sister Evangeline on multiple occasions. One particularly bad incident he bit her back so bad she was bruised from the middle of her back to her arm and on her arm as well. This was so disturbing I took her to the doctor to show him and discuss Topher with him. He wants to have Topher evaluated by a psychologist to determine if he has a type of autism. The doctor's take on it was that since the diagnosis and medications are all so serious he would not make the call without a second doctor agreeing with it.

A week later he hit her in the face so hard that he separated the tissue that holds your upper lip to the gums in your mouth. I felt so bad. It all happened so fast. I called the doctor and informed him. He wants to put Topher on medication. If he hurts Evie once more then he will put him on the meds. Topher has bit her twice since then, but I really want to wait and have the psychologist evaluate him. Plus, when the doctor does come and evaluate him I don't want his behavior to be altered from meds. I want her to be able to see how he truly is.

For now Topher and Evie are not to be alone for more than a few seconds. I try to have one or both even come with me to the bathroom! It is exhausting! Also the aftermath of all this is that Evie is often afraid of her brother. So he may just be near her doing nothing, but she will cry and scream that he is after her. That is the worst part. I never know when something is really wrong or she is just anticipating something happening. I don't blame her, but I am so wore out. I feel horrible about it too, but I am sick of hearing her whine. Which really breaks my heart! I feel like an awful mom, but it happens off and on all day long every day! I am at the end of my rope. The psychologist doesn't come until the 21st of this month. Trust me that day could not come any sooner.

steam rolled

I just feel completely overwhelmed. Christopher's recent diagnosis of sensory integration disorder just puts me over the top. I'm trying to work outside the home a little and getting mixed feed back from hubby, and my feelings as well. I've got the kids in preschool and swimming! Which is good, it is just a lot for me right now. I feel like I'm stuck on the merry go round and can't get off! The world is just spinning round and round me right now! I'm trying to be a part of it and get stuff together, but I'm just missing it! If that makes any sense at all to anyone!!!

Sensory Integration Disorder

I have to say that I am just I don't even know how to describe it. I am beside myself. Today was Christopher's first steps Evaluation. They are an early intervention program by the state to help developmental issues. I insisted the doctor set this up because I was concerned with his speech issues. He can say a word one minute then not the next. I actually thought they would come and say he is normal, and I am just neurotic. However, that was not the case.

Don't take this the wrong way. I love my son with all my heart. He is just difficult. He is extremely impatient, demanding, high strung, and difficult to communicate with (he's hard to understand). He has a lot of behavior issues. He hits, bites, kicks, and all kinds of things. He is wild, as if he has no fear, and experiences little pain. I had no idea the extent of his issues. I thought he was just a wild boy. I figured that maybe we played to rough with him. I thought that some how we had to of encouraged this type of behavior. I never imagined that he just couldn't control himself.

He is deficient by at least 25% in 3 areas. I believe it was gross and fine motor skills as well as social skills. His cognitive skills are normal. They said that he has sensory integration disorder, and until the sensory issues are solved the other issues won't really progress. He isn't mean, not that I thought he was! I knew he was a kind loving boy, but couldn't figure out why he behaved the way he does.

I always felt like a bad mother with Christopher. He has always seemed so distant and foreign to me. I just don't get him, and that breaks my heart. It is very hard to admit, and tell people that your son seems like a stranger to you. I've thought many times if I could go back to when he was a baby, and do things over again I would do a better job. Despite the fact that I have no idea what I did wrong. I've asked my husband one many occasions how did I raise one kid good, Evie, and Christopher all wrong. (Evie isn't perfect she's just not as difficult as Christopher). I kind of felt that I did him a disservice by having him so close to his sister. I thought maybe I wasn't able to give him enough attention.

I just blamed myself, and tried all the discipline things I could think of, time outs and tons of positive praise. I am so relieved to know that I did nothing wrong. I am so glad that I followed my instincts and insisted he be evaluated. Despite the doctor's thinking that all was fine. Now I can focus on helping him, and learning about what is going on so I can understand him better. I am so excited to really get to know my son finally and have the relationship with him that we've missed out on.

Once I get past all the shock of this new information I will begin researching sensory integration disorder, and get Christopher started in theray. I am completely overwhelmed right now, and almost in tears. This has made me realize some issues that I didn't see before. I've had to face some tough truths over the last hour.