First day of home intensive therapy

In May we hired a young behaviorist named Kadee for the summer. Her name is actually Kade too but she goes by Kadee with us so not to create confusion for our Cade. 6-8 hours a week, in 1-3 hour sessions, she came to his OT appointments getting to know Cade, his preferred activities and his triggers. Walked to several McDonald's lunches with us to form a bond.
She was highly recommended by a friend with an older autistic son.  She was more expensive than what we would typically pay a home therapist, and that was at her sliding scale rate for a nice policeman and soccer coach budget, but Kadee turned out to be worth every penny and more! She even came to some soccer tournaments this summer, sat with Cade in the car until he was comfortable, then gently lead him out to the field where he was greeted by mom and dad and a small pop up tent for refuge from the sunlight and busy soccer sidelines.  She immediately understood him and he appreciated that she respected his differences.  Kadee teaching him that he has choices, there is always time for a break and a Plan B and how to be a "Negotiator" empowered him.  Still, he struggled with any stressful situations and Kadee ran high levels of support and interference so he could function in group settings.  We needed her 6 hours a day, not 6 hours a week.
Then it happened...Summer was over, funds were exhausted and Cade was not fixed yet!  What I didn't previously mention was the HOURS of meetings, phone calls, emails and headaches spent "negotiating" with Northshore School District over my son's education.  Finally, on the first day of school last week, the Special Education Director called me and made my year.  NSD had contracted Kadee for 6 hours/day through December!  Today was her first day.  We were all wondering how it would go.  Could he tolerate her for more than 2-3 hours?  Could she tolerate him for more than 2-3 hours?  I never left the house, listened to the therapy interactions,..Cade made it 5 hours easily! Tonight I prayed and thanked God for the miraculous intervention He had given us in Kadee.  He provided funding for the summer when we had nothing.  He worked his way into the steel walls of the school district budgets. And continued with the probable success of this new medication.  God is good.  Look for another blog posting soon on the possible CIIBS Waiver for Cade through DDD.

Day at the lake

Cade used to BEG to go swimming.  His body craved the compression of water and he would spend hours swimming and/or taking baths/showers each day. His severe anxiety and fear of being touched has prohibited that love of the pool.  Our back yard Costco pool has sat unused all summer except a few warm evenings where he has gone out after dark and swam 9-10pm.  Sunlight bothers his sensory system.  He has gone out to the lake twice this summer to swim at Grandma Diane and Grandpa Rick's house.  Yesterday was a huge success in that he stayed 4 hours!  It took an hour of pacing the dick and watching Jace and Tia jump joyously off the end with cannonball competitions before he decided to join in.
He swam for 2 hours and finished the day with a few laps around the lake with Grandpa on the SeaDoo.  First he carefully watched Tia ride then he took a spin, self talking the entire way "you'll be alright" about a hundred times in Grandpa's ear.  Rick said he was wearing ear plugs next time.  But, he enjoyed it and talked Grandpa Rick into going back out.  After a small OCD retouching incident with Grandma Diane (I held my breath he would not hit her after such a light touch of his head that she did not even notice) to get the life jacket on, he recovered and went out for another ride.  This time, Tia sat between Grandpa and Cade. He enjoyed the ride but was ready to go home, tired from all the fun in the water, waved goodbye and said "See you tomorrow"!  Was the water loving Cade back?!
Was this medication really enough to cut the edge so that he could enjoy the simple things in life again?!  My prayers may be answered.

The Medication decision

We've tried 4 different medications this year. Luvox (for OCD and Social Phobia), Lamictal (Mood stabilizing, anti-seizure), Clonazepam (like valium - as needed for severe anxiety) and now Risperdal. Each had side effects that we could not continue. I didn't even mention the 2 prescribed that he refused to take; oral liquid and sprinkle forms (don't blame him - tasted terrible!)

He seemed to get much worse after coming off the meds, even lowest doses that were not considered therapeutic. Cade’s ticks were getting more severe.  We are stopping the , Clonazepam, medication to see if that is causing them.  Seemed to cease.

Why would someone want to bite, hit, scratch himself? He actually bit the door jam to Tia's room when he brushed against it last week. After obsessively re-bumping until he bruised his shoulder.  I don't think he can control himself during these episodes. He often screams "Make it stop"! during self infliction.  Then, he talks about fire and begs "no hospital" following his melt downs. Several specialists have mentioned possible seizures.

Dr. Stobbe, neurologist at Children’s, is starting him on a new antipsychotic med called Risperdal. I'm desperate to level out his aggression before he hurts himself or someone else. 5 days at night on new med. It seems to have controlled his explosions. Or, maybe he just had a great weekend, getting sleepover with Grani & Pops.  It comes in a dissolving tablet form that melts away on his tongue. We're supposed to double it tomorrow, adding .5mg in am as well.

WHY AM I GIVING MY CHILD AN ANTI-PSYCHOTIC MEDICATION??? 

Scary title so researched...

What is RISPERDAL^® (risperidone)?

RISPERDAL^® is a prescription medication indicated for the treatment of irritability associated with autistic disorder in children and adolescents aged 5-16 years, including symptoms of aggression towards others, deliberate self-injuriousness, temper tantrums, and quickly changing moods.

For more information on autistic disorder, please visit the National Institute of Mental Health Web site and RisperdalAutism.com