Let the games begin!

Let the games begin!........Originally posted/written January 11, 2011

 

Let the games begin....Never in a million years did I anticipate the game playing and disrespect we were about to experience.
As we sit in the IEP meeting...As I preceded to give Cody's history and medication list and diagnosis's.  The school Psychologist stops me and says you know it would've been helpful to provide this information a long time ago. I was appalled I had tried since August this was April! 

Psychologist and special ed coordinator tell us that they think Cody has Asperger's.


My husband and I didn't know what we were doing going into all of this. We were able to get a very poorly constructed IEP with no behavior plan. This got us through the rest of the school year (1 month left).
We still were not satisfied, so I did some research(I have become very good at it). I have given myself a degree in Google University.....

I found an advocate that we consulted with over the summer she gave us a name of a place to have Cody tested for Autism. We took it upon ourselves to get Cody tested. It was a very expensive test. We made a total of 5 trips 75 miles away.


I began in late July trying to make contact to the school, to share the test results and request another IEP meeting. I was told that I needed to wait till the school year started. I was also informed at that time that the special ed coordinator and psychologist were no longer with the school district. 


I received a call from the new coordinator. I shared a bit of the information with him and let him know that we were very eager to move forward and get services and Occupational Therapy (OT) going for him. A meeting was set up. We brought with us the advocate that we found. We were so excited and ready for a new start for Cody. Boy were we ever slapped in the face at that meeting. Things were unbelievable in the meeting. We were shocked at the comments that were said. 
Over the next 3 years we would come to be very familiar with the special ed coordinator saying numerous times in the meetings "There is nothing wrong with him"!

The fight continues

The Fight continues......Originally posted/writter January 9, 2011

 

My son is 9 years old. Since his birth I knew he was special. Over the course of his years he has accumulated LOTS of diagnosis. ADHD, Bi-polar, ODD, Separation anxiety, Sensory integration, and Asperger's syndrome. Cody has had quite an adventure in his short life.


Since he was about 15 months old he had been in therapy 4 days a week to help with his diagnosis and sensory problems. He has been medicated since the age of 3 years old. That was a very hard decision to make. Therapy was just not helping. I needed to keep Cody and the rest of the family safe. Cody could be quite violent and have very extreme temper tantrums. Cody has been to numerous specialist and we get the same diagnosis and answers. At some point we want to be able take him off medication. 


Fast forward to present time more history to come......


Three years ago we moved into a new school district. I should have know the minute I tried to sign the kids up for school that their were going to be BIG challenges ahead of us. Like I previously stated my son had been  to a hand full of specialist. Which means I have LOTS of paperwork and documentation. I also had all of his records from his previous school which he excelled at in regular education classes. I tried to hand the principle and special ed coordinator at the new school his information, they refused to take it. "I was told let's just wait and see how he does!" 


Needless to say my son started school and had lots of problems occur immediately. He was failing quickly and getting into lots of trouble. He even started getting suspended at the age of 8. His actions all had to do with his disabilities. My husband and I began to ask for the school to open an IEP (individual education plan) again for Cody. We never got anywhere, now we find out that the school had 7 days to respond to the request. This went on for the entire school year trying to fight for him to get him help. More suspensions occurred. It seemed like the goal was never to help Cody it was just to move forward and ignore the problem. My child was threatened to be expelled from school. We had been in close contact with his Dr, he suggested we put Cody in the day program at the hospital so he didn't get expelled. 


We finally at the end of April got a meeting for his IEP... Let the games begin!

There is nothing wrong with him

There is nothing wrong with him....  Originally posted/written February 20, 2011

There is nothing wrong with him is becoming very common to hear from the school. It sickens me and makes me cringe every time I hear it. I don't understand why it is such a fight to give my child the services he needs. He has multiple diagnosis and is heavily medicated. 

At birth I knew that something was different about my child. He never was happy all he did was scream. He never wanted to be held or comforted or even touched. At about 3-6 months old he would get so mad that he started to bang his head and hit things and himself. I was the only one that he wanted and that could semi comfort him. He was just such an unhappy little boy. Some of the fits that he would throw were unbelievable. He also never slept. I was exhausted from never getting any sleep. All Cody wanted to do was eat and then he would throw up. He never kept much of anything down, so he was then hungry all the time. Thus began my journey of getting help for my son. 

At 15 months old he was evaluated by Easter Seals and began services immediately. Cody had OT (occupational therapy), Behavior therapy, and Developmental therapy. This went on 4 days a week until he turned 3 years old. It was very hard to sit in on Cody's therapy daily and see how bad he would fight the therapist. He was miserable, touching him and forcing him to touch items he didn't want to were grueling for him. (Play-doh, water, shaving cream, lotion being rubbed on his arms). 


How anyone can think and say that there is nothing wrong with Cody by looking at all his reports and therapy that he has done is unbelivable to me. 


Cody started seeing a psycologist and taking medication at 3 years old. I was out of options for him he was hurting himself and me. I was very leary about putting him on medication, but felt that it was the best choice for him. It took some time getting him regulated, but improvments came fast. He started to sleep it was great. He contnued therapy and started an early childhood program at the school district we were in. He did very well there had pull out sessions for sensory and behavior managment. 


By the time kindergarten rolled around he was able to come out of special ed and go into a regular education class. Although he was making impovments at school services continued to be in place for him.


I decided to take him to Children's Memorial Hospital to have a second opinion and check on the medications he was on. I was lucky enough to get him an appointment with a world renowned Dr that had been on Oprah. She is a wonderful Dr. with a year waiting list. She saw him and evaluated him on 4 different occasions. When she was done her recomendations were exactly what his Dr. at home was doing for treatment for him. She said that her diagnosis were the same and wouldn't treat him any differently. That really made me feel good, and set my mind at ease on the medications.


The stress of the move begins!

Month of May is horrible

The month of May has always been a horrible month for myself and my son. It is the end of the school year and all of the kids are ready for summer. Cody always seems to cycle and have such a rough time at the end of the school year. I always seem to take the brunt of the problems.Whining and tantrums in the morning and evening. He also has lots of problems at school not feeling well wanting to come home from school early. His sleeping pattern is also disrupted and he is up through out the night. I feel that absolutely nothing gets done and I have no energy to make it through the month.  It is so hard for me to make a commitment to anyone I feel that all my energy goes to helping Cody get through the day.

 It is also time for end of the year IEP meetings and getting everything together and set for next year. That is such a draining process on any parent. Preparing for the meetings ahead of time going over test scores and notes and the new goals and objectives.

I have never been able to figure out what or why kids have such a rough time at the end of the school year. It seems to be that they are just so tired and ready to be out of school.  I wish I could do something to help my child make it through the rough times. I would give anything to take away his sleepless nights and frustration.

A glimpse of the past to the present

My son in now 11 years old. He was born a week early by C-section. I was placed on bed rest about 6 months pregnant with him. Cody's stomach was not growing at the rate it should have been. I also had to start going to the hospital for stress tests and frequent ultrasounds. February 9, 2001 Cody was born. I knew shortly after he was born something was different with him, he cried and screamed all the time. He couldn't keep anything down and had massive diarrhea all the time. He then started to get ear infections. He went through a handful of different formulas, it didn't matter what he ate it came right back up. He also never slept. I was up feeding him at least 5-8 times a night. He spent some time in the hospital and went through a lot of different testing. He started to bang his head and get very angry all the time. I would try and comfort him and he would cry more. I was the only one that he would tolerate. He didn't want anyone else to hold him. I finally got to the point that I had to prop up his bottle and sit behind him so he would eat.
I just kept on going with him not sure really what to do. 

I was involved in a local play group, we had a field trip one day and it changed our lives...... The field trip was to Easter Seals. While we were there I spoke with different employees and filled out an application for Cody. We had appointments and interview scheduled and off we went to getting some help for Cody. Cody started receiving Occupational therapy 2 times a week and Developmental therapy 1 time a week and Behavior therapy 1 time a week. Cody started with Easter Seals at the age of 15 months old. It was a lot of work and Cody did not like the therapy at all, he did start to get a bit better. It was very clear that Cody had major sensory issues. At age 3 he aged out of Easter Seals and was put into the school district. Cody also started medications. It was not something I wanted to do at all, but I soon realized I had tried therapy and lots of other interventions and nothing was working. The medication was a big help, Cody was able to function and calm him self down. Cody also started Early Intervention in the school district and seemed to do pretty well. He still had a hard time separating from me but seemed to do better. He didn't have too many problems at school at all. By the time Kindergarten rolled around he was doing so well he cam out of the special education program and went into a regular education classroom. When he started his medication I was given a diagnosis of ADHD, Bipolar, Separation anxiety and  Sensory Integration. We moved in 2007 and he was to start in a new school district in 2008. the battle begins. My husband and I never imagined it would be so difficult to get cooperation for a special needs child.