Wednesday, April 16, 2008

Our boy is sick.


We noticed when Kole was 3 that he wasn't like other children. He would tantrum for hours at a time. He was defiant and unruly. We worked with several psychologists that I didn't care for before we found Children's Behavior Health at Childrens. We have now been with the same psychologist for almost 6 years. We have worked with different therapists, counselors and psycholgists. He is being treated for ADHD, Oppositional Defiance, Depression and Bipolar. We do not have a diagnosis for Bipolar as he is so young and there are very little studies regarding Bipolar in children. We have been on and off every medication that you can imagine.

We have worked with the public preschool programs in which he held a special needs spot for 3 years. He started preschool at age 3. He is now in the 2nd grade. We have an IEP through the state. We have a WONDERFUL team in place at I.T. They have a geniune interest in Koley and truly hope to see him succeed. We are very fortunate that they school is such a huge, huge help.

We were assigned a in home therapist from Childrens in 2005. He would come to the house 2 to 3 times a week and work with Kole and the family. During the summer of 2005 while pregant with Abbie, Kole became extremely angry and full of rage like we hadn't seen in the past. He jumped from his second story window, jumped out of the second fllor loft openings onto the first floor, he began throwing things and hitting and hurting himself and me.

He was admitted for 11 days to OSU's Harding Hospital. We continued working with the experts. The violence and aggression continued as he was admitted to OSU again in July of 2006 and December 2006. A total of 3 stays.

We made the decision in December 2006 that we would admit him for a minimum stay of 30 days to a residential treatment program here in Columbus at St. Vincents Family Centers. Almost 16 months later we are at our wits end. He has been able to visit while Sean is home and we were assigned a staff member in November that brings him home 3 nights a week. He is unable to be in our home without supervision as he is very violent and unsafe. I am unable to keep my girls and Brody safe when he is tantruming and throwing his violent, raging fits. He often has to be restrained and returned to St. Vincents before completing his scheduled visit.

During his 1st grade year he attended school at St. Vincents enrolled in Columbus Public. This year, his 2nd grade year we were granted funding from Canal to have him transported to and from so he would be able to be in a stable, routine like environment. We had NEVER had any issues at school, UNTIL the last 3 or 4 weeks. He is REALLY struggling. He is exhibiting unsafe and violent like tendancies at school. We have been working with his teachers and principal to find a solution. They have been extremely helpful and have a genuine concern for Kole.

We continue to work with therapists and counselors and just this last week have been assigned TWO new intensive home based counselors from both St. Vincents and Childrens. They come to our home and work with just Sean and I, Kole alone and all of us as a family.We currently have 4 to 5 appointments a week for Kole not including his scheduled visits. It is truly a full time job in itself.We are now looking into several treatment programs outside of the county which is very frightening. Our options are limited due to his age.

Sean works very hard and VERY long hours. 5 days a week 12 to 14 hour days...it is hard when he is gone so much. I am growing very tired. I am concerned about my girls and the effect that is having on them.

We are currently on the waitlist at Children's to have him tested for high functioning Autism or Aspergers. We hope that with the severity of his case that he will move up quickly.

On a positive note...he is making great strides academically. He is very, very smart. His teachers say he is a "sponge." He is a very witty child. Quick to crack a joke. He loves his baby sister and bub very much and helps with them often. He loves to be outside and run and jump and play. He loves to explore and get dirty. He enjoys reading, playing games and transformers!
Keep Koley in your thoughts as he struggling greatly.


Treatment timeline...
Children's Behavioral Health/Dr.Kipp Kastins since July 2002 until present.
In Home therapy from Childrens from January 2006 until December 2006
July 2005 Harding
July 2006 Harding
December 2006 Harding
May 7-May 18 2010 Harding

December 2006 Admitted to St. Vincent
we withdrew him in August 2007
readmitted Labor Day weekend 2007
discharged May 2008

Received in home counseling from St. Vincents from Janaury 2008 until May 2008
June 2008 admitted to Rosemont
July 2008 admitted to Applewood
May 2009 admitted to University Hospital in Cleveland
May 2009 Respite care at St. Vincent
June 2009 Admitted to Buckeye Ranch
December 2009  Discharged from Buckeye Ranch
December 2009 Re-admitted to Buckeye Ranch
April 1 2010 Discharged from Buckeye Ranch
June 6 2010 Admitted to Buckeye Ranch for crisis care stay/one night
June 8 2010 Admitted to United Methodist Children's Home for respite stay
June 2010 8 day stay at Harding
August 2010 9 day stay at Harding


UPDATED: January 2009

We have experienced many changes through this last year. Franklin County now has legal custody of him and he has been placed at Applewood Children's Services in Cleveland. He is struggling and not behaving well or showing much progress while under their care. He is having successful home visits and we are enjoying having him home.

March 2009
Koley has been given a positive diagnosis for bipolar. He is being treated with medication and therapy.

http://erintenneyjohnson.blogspot.com/2008/06/latest-on-kole.html
May/June 2009
Koley will be transfered from Applewood to The Buckeye Ranch on June 15th.

July/August 2009
Assessments completed by Children's Autism Clinic
Found to be PDD/NOS

Feb 2010
Kole will continue school with WTES in their CAP program .  (Comprehensive Autism Program)

August 5, 2009
PDD/NOS diagnosis confirmed by Step by Step.

January 2011
Discharged from the Ranch intensive home program.  Has been home for over 9 months.
http://erintenneyjohnson.blogspot.com/2011/01/meet-elizabeth.html

4 comments:

jannypie said...

I didn't know about this blog Erin, but I'm so glad you shared the link! I love reading about your life.

I am so sorry things aren't getting better with Kole. I can't tell you how it hurts my heart to read all of this. ::hugs::

Danica Lynn said...

I too am glad you shared the link. My thoughts and prayers are with Kole. I can't imagine what all of you are going through. I'm sending hugs to everyone in your family.

~ Stephanie ~ said...

Thank you for sharing this with us. Koley and your whole family are always in my thoughts and prayers. You are such a good person and a wonderful mother - Kole, Lanee, Abbie & Brody are so lucky to have you! ((hugs))

Anonymous said...

Hi Erin, this is Natalie, Jan's friend. I remember talking to you about your son before, but as I read this entry in your blog I saw my sister and my childhood flash before my eyes. My sister was "daignosed" and "treated" for the same things you listed...and her behavior was a mystery for all of her childhood. I was the "other" child, the "good" one. She is now 24...and she's doing ok...and most of her behaviour is just thought of as a part of who she is, but a very small part. It does not define her or our family. The biggest lesson I learned was that families stick together NO MATTER what, and that mom's do ANYTHING to help their children. There were many days that I wondered why my parents didn't just send her away...it was so frustrating day after day...but when I become a mom, I am sure I will understand. You are doing everything right. I just wanted to tell you that you are not alone, and you are a great mom. Please let me know if you need to talk.