One of the hardest years in my life is coming to an end.... This was one LONG ass year of non-stop fighting for John. Recap- 1. ENDLESS medication trials with a neurologist that I have nothing nice to say about. She was blunt, cold and a plain old nasty person. Needless to say NONE of the 7 medications worked for John and her next best option was to not see John anymore for a LACK of better options -she simply told me he needs to find a residential placement because he wasnt going to get any better. 2. ENDLESS IEP ( individualized education programs) and BSP (behavioral support plan) changes and modifications to help keep John safe. Safety became his #1 goal in AHRC as his severe behaviors became unsafe for the staff, other kids and himself. 3. Being told on more than one occasion to come pick John up from school or they would have to call 911- as his behaviors escalated out of control and the BSP could not keep him safe. 4. Endless calls to crisis intervention (CI) to my house to help me keep John safe during a crisis ( severe behavior). Adding several visits from CI to provide respite as I had john 24/7 with zero help from his biological sperm donor of a father. Lets not forget the day I ran to CVS while the crisis intervention person stayed with John so I could get Johns meds filled- when I returned the person from CI was ASLEEP on my couch.....yeah that was the LAST visit from crisis intervention! 5.Night terrors galore.....many many nights of screaming and becoming self injurious. Many nights of no sleep, getting John on to the bus and getting to work a full time Job.....only to come home and do it again. 6. Losing my lifeline -(Maricella our nanny) she lived with us for 7 years. She helped me #100 of the time. She held John at 3 am while I cried....she suffered more attacks from John than I care to mention. After 7 years her stress levels were so high she had to move out. We still keep her in our life....I will always be grateful for the support she provided. 7. John was provided private transportation to and from his day program as he could no longer be on a bus with other kids for safety reasons. 8. John was asked to leave his school (AHRC) because they couldnt meet his needs forcing me to hire an educational attorney and fight my ass of to find a suitable school for John- as I was being told I may have to home school him if I could not find acceptable program. 9. Entered the Medicaid system nightmare. Took almost 1 year but he finally got accepted based on his diagnosis. What a shit show that was! 10. John started DDI school....and started to see progress:) 11. Continued to search for residential placements and was TURNED DOWN by every placement in NYS! Why? he was considered too severe for a group home! Ya believe that shit? 12. John was turned down by every respite program because his behaviors were too severe. So....he was too special for special needs programs....Yep no joke. This was our reality. 13. Found out ...a beautiful residential placement (DDI) was being built 10 minutes from my home- on the same campus as Johns day program. I tried to gather information regarding getting him in....I was told this placement is ONLY for kids at risk of being sent out of state and for the kids that have already been sent out of state. Ah ha.....and I began my fight.....which included many phone calls to the local congressmen begging him to help John gain entry. Educational attorneys etc.... 14. John was accepted into DDI residential placement- 9/15/14 15. Supreme court to battle his asswipe of a father who NEVER helped however felt he should attempt to STOP the placement- with NO BETTER OPTION. With the help of not one but 2 lawyers....I won that battle. 16. Continued meetings with the residential program to create an environment that will facilitate Johns progress. Endless team meetings to discuss my issues with the CRP....I am ALWAYS looking for better ways to help John....this will continue to be a work in progress. 17. Started to sleep, my eyes stopped twitching....my life began to feel normal ish... 18. Went on a trip for 6 days... first time in 10 years....and was able to feel rested while knowing John was being cared for. 19. Entered a motion in court to seek FULL custody...as there is some loop hole in my divorce stipulation- that makes it seem that his father has Joint custody AKA - has an opinion... Reality ...this man is nothing but a road block....he REFUSED to help me physically or financially....however he stood on the side lines calling some shots....GO AWAY.... The legal system is a joke to tell you the truth. Its all a money making scam....and the only one who wins are the attorneys. Truth- I dont care. I will spend 100k to make sure the man will NEVER have an opinion...when it comes to the care of John. 20. Looking forward to 2015! Its been a VERY long and difficult year....but I see nothing but positive things for the up coming year!
Posted on: Wed, 31 Dec 2014 13:19:28 +0000