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. 

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.

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.