Saturday, November 29, 2014

life before autism

Tom and I both grew up in Nebraska, me in Omaha and him in Columbus. We both came from hard working families that believed respect was # 1. We both came from large families, my Parents raised 5 kids in 3 different generations, his family had 7 kids all very close together. We were married in Omaha and his job transferred us to Kansas while I was pregnant with Michael. Being very young and being away from family was very hard, it did make me stronger. When Michael was 13 months old I found out I was pregnant with John. John was born 8 weeks premature in Manhatten, Ks. It was probably one of the most scariest things I have been through, the Drs told us they had no idea what to expect but they had life flight standing by to take him to Kansas City to the neo-natel intensive care unit if needed. He was born 6lbs 2oz no fat, a lot of extra skin and he lacked sucking muscles in his jaw. Feedings would take forever because we had to move his mouth up and down, they said he would never do things at a normal rate. I would like to talk to those Drs now. John hit every milestone on target and did everything his brother did. When the boys were 2 and 8 months old we were transferred to Ky. Tom was working 70 hours a week and I only saw family maybe once a year so I had to learned to be stronger then I ever thought I could. We decided it was time to set down roots and buy a house, it was not long after we became new homeowners Woolworth closed their stores and once again we found ourselves relocating. But first I had to stay behind and sell a house while Tom lived and worked in Indy. We stayed there for about 2 years. Indy is not a place I would call home, after Tom had a life changing incident he made a phone call to a friend in Cincinnati who had been trying to get him to come work for a new company. We were off again only this time we went back to Ky. The boys walked back into there lives and I went back to mine. When the boys were old enough to drive I went back to work. I really loved my job, and the people I worked with. Both boys graduated high school and started their lives Michael moved out and worked full time, John was in college. We found ourselves working a lot of hours and just crossing paths. This is when we decided we were going to become foster parents, we just were not ready to be empty nesters yet. In the middle of going through classes my company decided they were going to close. I had decided once again I would be a stay at home Mom. In the meantime both of my Parents health was declining and they knew they needed to move close to one of there kids so they would have help. I was the one, what my siblings never realized is how many days I had to leave work for my parents health, my mom would fall, she got a blood clot in her lungs, my Dad had several strokes. So life before autism was very busy, we had a lot of responsibility, and as a Family we pulled together to do what we needed to for each other and for my Parents. Everything we did was out of respect and love. We truly believed that our love would conquer all. I would like to think that our life before autism was pretty much a normal family life we shared the good times and the bad times. We thought this would prepare us for anything that would come our way.

Sunday, November 23, 2014

So it began

Our families journey with autism has been a rollercoaster. It all started about 9 yrs ago when we decided to start fostering children. We were asked to foster a 4 yr old boy who had been placed due to neglect. Of course I knew in my heart we could help him, he came to us very angry and his face showed nothing but anger. He threw horrible tantrums, destroying walls, furniture, and most importantly family events. Anytime we had a happy event Christmas, Birthdays, etc we were sure to have a horrible fit from him. He was admitted into a Childrens Psychiatric Hosp a total to 8 times over the last 9 yrs. His tantrums were very aggressive towards anyone that tried to stop him. He was first diagnosed at 5 with RAD and our journey began with therapy. We tried everything that they told us to do. Nothing worked. As our therapists came and went we kept seeking help for him and our family. He seemed to hold it together at school with the tantrums but still would get in trouble for other behaviors. He was suspended from the bus for shoving a boys head into the window because the child touched him accidently, he got detention for patting a girl (even though he knew better) his thought process was and still is "but I wanted to". As the years past his bio parents did not do what was needed to regain custody of him, and we were asked if we wanted to adopt him and his sister. Of course we had them for 2 yrs they were our children. At the same time we were finalizing their adoption we were asked to foster 2 boys that had been placed in 4 homes in a months time. I remember my words exactly to the foster care worker who called me and told me their story. The oldest boy was 2 1/2  and the youngest 16 mos. She went on to tell me their story and I said how stupid can these foster parents be they are just babies. When the worker walked  in my house with them and the oldest could only scream I just thought this poor lil boy he just needs to know that he is loved. The 16 mo old suffered from neglect he banged his head to sooth himself  and he did throw fits, but as the time went by we discovered it was the only way he knew. As for the 2 1/2 yr old it was something more. When in public he would throw fits, kick people, spit on people, throw things and run off. I started him in therapy at 3 yrs old and we started our long journey. The Drs tried all kinds of different drugs on him and nothing seemed to work and if it did it was sure to fail. He was diagnosed with inutero drug exposure. Which as we were told makes the body react different to foods and drugs. We ended up switching him to another Psychiatrist that our other son was seeing so that we could get him more therapy. All they could say was that he was wired wrong, I could not except that there was no help so we kept searching. I also did not think that this was the only and thing wrong even though the Drs did not care what he had they wanted to treat the symptoms. I went with that for many yrs. In the meantime Bio Mom had another baby and the state placed the baby in another foster home because we were full. As they moved towards TPR we knew there was no doubt we were going to adopt this sibling group. So we began the process of getting the third baby placed in our home so that he could grow up with his brothers. That in its self was a fight. The boys deserved the chance to grow up together. Thanks to there awesome state worker who was behind us 100% the baby was moved to our home so we could begin the adoption process. At this point we had finalized the adoption with the first 2 and now were working on the other 3. Still searching for answers to the two boys mental condition. We were told that Rodney had RAD and there is no cure only meds to control the symptoms. We could not except that. Trenton was diagnosed still with inutero drug exposure and as his Dr would say he just is not wired right. With all adoptions finalized and no state worker or case manager to guide us we began our journey of trying to find the help Rodney and Trenton needed. I became very good friends with anyone who I thought had the expertise in OT, DI (developmental intervention) therapist, other foster parents, teachers, school counselors, and the Drs. I knew in my heart we were looking at something that there was no cure for, and all the love in the world would not fix this. This was going to be a lifestyle change and teaching the boys to look at things differently