Friday, June 27, 2008

Fiona's journey part 2

Once she settled in, we began a routine of visits and phone calls with Fiona. We entered into family therapy with her. It was rocky. Weeks went by and then months. Eventually it was decided that we were not an appropriate adoptive family for her. Our house had several children. If Fiona would ever survive in a family environment she would have to be the only child. More testing happened and a medication regime that was truly scary. I think that the professionals felt that Fiona was bipolar but didn't want to use that word. Bipolar is a scary dx and might diminish her chances at placement. So mood disorder, conduct disorder, you name it disorder was floated. Meanwhile there were still lots and LOTS of holds going on because of her lack of behavior control, there were instances of very unsafe behavior (trying to jump over a railing on the second floor) and more. It was clear to me that though I really had come to love her, she couldn't live with us. I wasn't prepared to try and guard her. Parent her yes, but the type of care she required was awake staff 24/7 and that wasn't realisitic in a home.

Still, her close proximity to us was great for visiting. We did picnics on the lovely grounds, pizza parties inside when it was lousy weather and eventually after another psych eval and yet another med change, we were allowed to start taking her off site. The best visits tended to be things like shopping for her hair care supplies, movie trips or a trip to an art place where kids could paint pottery. She wanted me to take her shopping for clothes but this resulted in a total meltdown. I opted to make shopping one of the very infrequent things we did. Being close by also meant that we could vary who went to see her. Often I would go alone and it really strengthend the bond between us. Robbie had begun to develop a circle of friends and didn't always want to go see his sister, especially since one never knew till you got there if she would be okay for a visit. (I could call ahead and she might be fine but in the 15 minute drive might have had a meltdown which would take a long time for her to work her way out of.)

The first year she was there we tried to bring her to our house for Christmas. Holidays were very hard for Fiona, and Christmas is a double whammy as it is also her birthday. Unfortunately she had such a severe tantrum the staff said they didn't feel safe putting her in our car and she had to remain at the RTC. After that we made plans the next several years for her to visit us the day after Christmas. This worked much better and finally the last year, she was able to spend Christmas Day with us.

I became her educational surrogate and attended all her team meetings and also all her treatment meetings. Educationally it gradually became clear that the original concerns abouther IQ were valid and that the progress she could make academically was not at a level that made her a good fit for the RTC. She was by now 12 or 13 and couldn't read a calendar or count money or tell time. She could read a first grade chapter book but couldn't write legibly. Still we were able to keep her there quite a long time. We adopted our next child KC while she was there. We explained about our trip to bring him home and brought him over to meet her. I agonized over whether she would be upset about this adoption. Would she think that we were replacing her? Would she think this meant we thought something was wrong with her? She loved him and was very good with him. KC was a quiet easy going baby and she bonded with him deeply. As he grew older she would play happily wiht him and he would smile at her and hold her fingers when we went to visit. Oddly, this made things easier for Rob as KC sort of took the heat off of him with his dealings with his sister. She would spend a lot of time focussing on KC and Rob was very happy to let that happen.

However emotionally Fiona was still not stable. She had two hospitalizations for med review and due to efforts to self harm. The RTC wasn increasingly concerned that she should be in a different type of facility and DSS frankly said that the bill for this RTC was a lot higher than that of other placements they could find for her. Efforts actively began to remove her from this location.

Thursday, June 26, 2008

Fiona's journey part 1

Fiona's placement was 90 minutes from our home. We made the trek weekly to visit her though and tried to speak with her on the phone mid week as well. Things were rocky at best. She was angry over having to leave our home. She was scared. We were trying to be supportive but didn't really know what to say, what to do. There wasn't a lot of guidance here. The social worker kept saying she would come home. I felt guilty for being afraid of what that could do to our family. Yet I did worry for Fiona. Maybe I didn't love her yet, but I did care about her. And she had been dealt a really rough start in life and i wanted things to be better for her. Happier for her. Yet when she called on the phone we often couldn't understand what she was saying. When we visited she often wouldnot be able to spend much time with us before her behaviors would escalate out of control. Several times we made the trip only to find we couldn't visit at all. The miles clicked by on the odometer of our old van and we worried what was to come.

Meanwhile Faith continued to express anxiety over living with us. The fact that we were two gay women, the fact that we were white, were all posited as reasons she felt uncomfortable. The most compelling reason though was that she repeatedly told the social worker and her foster mom that she didn't want to live with Fiona. I was genuinely heartbroken. Despite Faith's claims of being upset by our sexual orientation and our ethnicity, she and I really did connect. Those issues didn't seem apparent in our interactions with one another. I felt that possibly they were subtley planted by the foster family who wanted to adopt her, but that the third issue was probably the deal breaker.

The reality was I could not guarantee for Faith that she would be safe around Fiona. I know there are families out there who struggle through this somehow. My feeling was although it would be great to keep all 3 kids together, it wasn't great if it made a little girl who was doing well in all other facets of her life (scholastically and socially Faith was thriving) despondent and dysfunctional. The old phrase our social worker kept parroting about the kids writing different stories just seemed far fetched. If we had another room available and the girls could have had separate spaces, maybe things could have been different. But how could I rationally ask Faith to share a room with someone who was so out of control that they literally destroyed the furnishings of their room? I had seen Faith's bedroom in her foster home. It was a sweet girly room and Faith kept her belongings meticulously neat.

We called the social worker and said that we thought the agency should consider her request that she not be adopted by us. We said that we would maintain our commitment to Fiona and to Robbie who had settled in with us quite well all ready. Fiona, I said, would be a harder child to place given the issues that had shown up. Faith was in a placement where they could move forward to adopt and wanted to do so. The agency agreed to separate the sibling group but then told the foster mom she could not adopt. Rather, a cousin in a city near to us was interested in adopting Faith and that would be the new plan. I was sorry for the foster mom. She had I believe a real love for Faith and a real genuine desire to adopt her. But kin come first in the eyes of DSS. I understand that, but it isn't always the right choice.

Meanwhile weeks after all of this happened, the hospital finally released their evaluation of Fiona. She had a host of issues and could not at present and perhaps not ever live in a family setting. We were her last best chance at this but the doctors were unsure she could even progress to a point where she could realistically live in our home. The social worker explained that now we would look for a residential placement.

I was furious that this information came after we 'lost' Faith. Perhaps I jumped the gun but I really believed the social worker when she kept saying Fiona was coming home in 90 days. Perhaps the social worker really believed that. Perhaps it was a case of mind games. I will never know and in the long run it doesn't matter because it was a done deal. We focussed on trying to get Fiona placed in a good residential facility (RTC in the parlance of this type of thing) about 10 to 15 minutes from our home. It was not a slam dunk. Her IQ scores were low, in the borderline mentally retarded range and the home worried that she would not be a good fit there. On the other hand, they were open to the concept that perhaps she was only testing at this range due to the lack of education and negative life experiences. Perhaps her behavioral issues were so profound that they seriously impacted her ability to share her knowledge. There were so many perhaps. Fiona toured the facility with us and loved it. It was beautiful. A far cry from the emergency hospitalization location where peeling paint and ugly hospital green walls were the norm. The beautiful former estate had lovely rooms, attractive open spaces, play areas and even therepeutic horsemanship. Fiona said she loved horses, it was a huge drawing card. We were thrilled when the RTC agreed to accept her and she moved in.

Monday, June 23, 2008

Fiona, Faith, and Robbie

Fiona initially settled into our house pretty well. She had night time enuresis and wore pull ups. She was on meds to help that and on adderall for hyperactivity. She also had a dx of PTSD and a history that included possible sexual abuse. She seemed happy with us, made friends with the girl next door and began school. We had been told that she had an IEP and pull out services for some scholastic delays and were told the delays were likely the result of very erratic school attendance until she went into foster care.

Our first issues showed up with school. Though she initially made friends, she also lost friends equally quickly. Whether slighted in a real or imagined fashion, she would become very angry at other children and the relationship would be over. Totally over. She had a hard time sleeping and a hard time getting up in the morning. She hated getting ready for school and was so slow doing it that we opted to take advantage of the breakfast at school just so she would get there on time. Our meetings with teachers revealed a huge academic deficit for Fiona. There was no way she could continue in a regular class room in our community. She would need extensive academic supports and pullout services would not meet the need. She was not able to comprehend grade level reading when she read it or when it was read to her. She could not write a coherant sentence and her spelling was so weak that I honestly couldn't read what she wrote. (neither could she when she tried to read it aloud to me.) She hated homework and was unwilling or afraid to accept our assistance. We opted to not fight over the school work now as we were trying to build bonds of trust and security and love. Surely if we were arguing over her school work it would make things worse.

Meanwhile, Faith was expressing a lot of anxiety to her foster mother. She said she was afraid to live with Fiona. She complained of stomach aches and headaches in efforts to avoid visiting. Though she seemed happy when she visited, and though she and i enjoyed each other greatly, we could see that she became very tense and wary when ever Fiona had a tantrum. The tantrums were increasing in intensity and the real problem was that it had always been planned that the girls would share a bedroom. There wasn't a separate bedroom available for Faith. If she didn't feel safe, if she wasn't safe, she shouldn't in my opinion be in a bedroom with her sister. Our placing agency had no help for us. They just kept saying the girls "needed to write new healthy stories together." Lots easier said than done.

Robbie was doing well. He was the second child to move in and settled in quite well. He had sleep issues and we had to keep putting him back in his bed. He had night time wetting as well and wore pull ups. We found that his foster home had tried frightening and shaming him in an effort to stop the bedwetting and my wife and I agreed we would say nothing about wearing pullups for a long time. We would just put them on at night and treat the bedwetting as no big deal. He was a good eater and loved to play. He had the most fun with his sister Faith. Like Faith, he seemed guarded and wary around Fiona.

Finally the mother of all tantrums happened with Fiona. It was an incredibly small trigger. She was asked to put on sneakers so she could come bike riding with her brother and my wife. She chose some footwear that was unsafe for bike riding and was asked to change to sneakers. She began to melt down in a really big way. Ultimately she destroyed her bedroom. Nothing left of the dresser, the bed frame, she ripped up clothing, toys and even her allowance. The screams and sounds of her rage and destruction echoed through the house. Chet picked his chest till he bled as a nervous response to her rage. Robbie ran downstairs and hid under a big quilt, curled up in the fetal position. We called our social worker who said to call 911. We called and the EMT's came and brought her to the hospital. My wife followed in our car; I stayed with Chet and Rob. Faith was luckily not at our home during this. The hospital soon sent her home. She calmed in the ER room and was no longer a danger to herself or others. There were no beds available anyway. We were advised to take her home. We did but that night K and I had a long conversation. This simply was not healthy for the other kids. Something had to change and we needed to have help with Fiona. We called the agency back the next day and said she needed some kind of emergency placement. We were afraid to say anything or do anything with her because she could rage over anything. Chet was angry with her for behaving as she did and was likely to speak his mind if they were together; we kept them apart. The social worker called back and said they had a temporary emergency respite placement and that we would work on something further after that. We explained this to Fiona. We told her we loved her and we needed to find a way to all be safe together. We helped her pack. The social worker came. I felt like the biggest failure in the world. Except that 2 days later she had such a bad rage at the respite home that they asked that she be moved immediately. She was placed in a bed that came available for a 90 day evaluation. We were told by our social worker that at the end of the 90 days she would come home to us and we would have a plan that the hospital would help develop so that we would all be able to be a family together.

Friday, June 20, 2008

Adding More Kids

The whole time Chet was growing up I had a deep desire to parent more children. However, Chet's needs were so intense that i could not see how i could fairly give other children the time and energy that they would need. We had friends who had a child with severe emotional and behaviorial issues and we saw how the younger sister had a situation which I would call "benign neglect." She received the basics but almost in a perfunctory way as the needs of the elder brother constantly sucked away the time and energy of the parents. I didn't want that for other children. But as Chet became a teen some of the issues that would preclude other children changed. There were no longer frequent rages. He could do some things (like dressing) himself. He would eat food that was put in front of him, albeit in a manner less socially normal than others and in general he could stay safe without our constant supervision. In some respects, we had it pretty easy. He had his homeschooling time with us but spent a lot of time reading or watching movies. He no longer wanted to hike with us as much as in the past. We were on the cusp of an empty nest.

And we weren't ready for the nest to be empty! Maybe partly that it felt that the nest was never really "full." I know Chet loves us, but he is fundamentally unable to really show that love most of the time. He gives a hug every night before bed but honestly because it is rote. Something we taught him. He has never learned to let others share, to spontaneously ask "are you OK?" etc. Aspergers tends to make emotional IQ very difficult to develop and this is profoundly true for him.

The summer that Chet was 16 we saw a Wednesdays Child segment on TV. It was a freak thing. We didn't typically watch that, but there we were, and there were 3 of the cutest children I have ever seen, 2 girls and a boy. The boy was 5, the girls 8 and 9. We called the next day. It was rather surreal how quickly things happened. Chet's adoption journey took so long but kids in foster care, particularly sibling groups are I think moved along much more quickly. We had to take a state mandated training and that was set up quickly. We filled out paperwork and the house was inspected and deemed safe for 3 more children. Ironically that inspection happened 9/11/2001 It was very strange to know that something horrible was happening to so very many Americans on a day that was so joyful for us. The homestudy was pretty quick as well,our welcome books were made, and by December we were set to meet the 3 children. They were all in separate foster homes and we agreed to visit the day after Chet's adoption day. We felt it was unfair to him to visit on his adoption day; that day was always special to us and should remain "his" day even though as a teen he no longer wanted any kind of real recognition of the day. The kids were a long way away from us, the closest was 90 minutes. We met Robbie first. He was 5. He was somewhat shy but enjoyed coloring with us and showing tree ornaments that he had made for us. He hugged us tightly when we left.

From there we went to see Fiona age 9. (* I have changed the names due to confidentiality reasons) Her foster home was in a truly scary area of town. The neighborhood was run down and the foster mom openly said she never let the kids play outside for safety reasons. Fiona seemed thrilled to meet us, and again played happily with us. She was in a home with many children and seemed to have a special affinity for the youngest of the children, perhaps because in her birth family she was often the primary caregiver.

A long drive then to see Faith in a therepeutic foster home even further away. Her foster mom was fairly hostile to us initially. She said Faith was afraid of a lesbian couple and a WHITE family and didn't want to meet us. She implied we had damaged the holidays for Faith and it was clear that she really wanted to adopt Faith herself. Still the visit went well with Faith and we found her to be a delightful child. She and I especially seemed to connect well. On the long drive home we talked over and over again about each of the children. We were so excited and couldn't wait to bring them home. But we desperately wanted to bring Fiona home first because we felt her situation was the least safe of all the kids.

There would be more visits first before that could happen. A group visit where the kids and our family all gathered at Faith's foster home for an afternoon of games and fun. With the exception of some outbursts from Fiona, the day went well. Chet was with us for that visit and worked hard to try and get to know 3 people in a short period of time. The children began to visit for afternoons and weekends at our house. We found that they had a hard time following directions when all 3 were together but did much better individually. We assumed that was because when they were together in the past, they HAD to make decisions for themselves.

We saw more signs of outbursts from Fiona. Her paperwork had indicated some tantrumming issues which we were not concerned over much about. No one indicated what a "tantrum" was and in our ignorance we imagined what we had seen with Chet. Her present foster mom said she was occasionally "pouty" but nothing more serious than that. Little did we know that foster mom had privately told the agency to move Fiona due to behavior problems and they had begged her to keep her till the adoptive placement happened. Blissfully unaware, we moved Fiona to our house permanently in early January.

Thursday, June 19, 2008

Chet's Journey part 5

I guess in an alternate universe Chet getting the job offer would have been the happy ever after ending. I was sooooo hoping it was. Yes, there were transportation issues, but he was so excited we said yes. We spoke with his boss who said that he knew Chet had issues but that he also was a hard worker with a good heart and seemed to have things under his belt now. We agreed to try 5 days a week, mornings only. Unfortunately this isn't that alternate universe and things didn't transition all that smoothly. I think the boss maybe expected a bit more of Chet now that he was paying him. He had a right to expect that an employee who had been trained for a considerable period of time would remember his tasks and do them the way he'd been taught. Chet still had a component of "maybe my way is better" that he continued to try and bring to the job.

Chet also is a person who always needed down time. He got a lot less of it working and began to stress out at home. Simply calling him to supper could result in a melt down. We waited a few weeks to see if things would level out and they didn't. We checked in with his boss and he said he felt the hours were too much for Chet as well. He saw significant signs of stress at work and was afraid Chet might lose the job if we were unwilling to reduce his hours. A series of trial and error resulted in Chet successfully working one morning a week. It wasn't what we thought it would be but it was what he could do, or at least what he can do for now.

On the plus side, he has been able to car pool which gives an added measure of independance. And he has KEPT the job (can you see me knocking wood here) We remind him often how important his job is, it isn't just busy work. His work helps ensure that people who might not otherwise have a meal, do so. Chet is very socially aware so this helps greatly offset his frustration that he can't seem to handle more hours. Because he still lives at home and will for the foreseeable future, he has enough funds to meet his needs. He isn't really a kid who likes "stuff." Trash yes, he will compulsively save trash if you don't check his room. But he has no great desire to own games, CD's or books. If he does buy books or CD's he tends to enjoy them for a short time and then gives them away. He has no great interest in clothing and if I didn't watch the condition of things, he would literally wear rags. He enjoys watching movies and has a netflix subscription but other than that, has expressed little interest in belongings.

He loves our church and is able to pledge to them, which is something that is important to him as well. Is he independent? No and maybe not for a long time. He really has no grasp of finances. He would give everything to charity if he could and forget that he should have money for food, rent etc. So essentially we still provide his necessities, shelter, food and most of his clothing. His funds buy any gifts he wants to buy for others and special meals out etc. He is happy, I think.

Wednesday, June 18, 2008

Chet's Journey part 4

It occurs to me that despite my efforts to keep this as chronological as possible, I have not included some key things. For instance, when we began homeschooling it is important to note taht we did not focus soley on his academics. They received a high amount of attention because he is very intelligent (in fact we found he was being intentionally school at a grade 5 level at grade 6 in the inclusion class. This was because academically he was the brightest student in the class and they had no way to use anything anymore advanced due to the educational deficits of the other students. He made up the grade 5 year AND completed a full course load of grade 6 in the first 1/2 year we schooled him at home.)

We worked a lot on social skills. I don't think we called it anything that fancy. But we practiced how to greet people, what kind of things are acceptable to say in public etc. In some respects we were very successful. Up to the point where we pulled him from public school, Chet could not understand how to respond when someone said "How are you?" as a greeting. He would answer "Tall." He had gotten his adult height very early in his puberty and this was the only thing of note he could think of to respond with. Unfortunately it was something of a conversation stopper. We got to the point where he would have a more socially normal response to such questions and to the point where I could take him to a restaurant for a meal if it was off peak hours. In general his eating remained a weak area. It was important that foods not touch and though we had greatly increased the kinds of foods he would eat over the years, he often felt the need to mash them into a paste. He also wanted his foods tepid or cold and we found that having him eat a communal meal with us on a regular basis was not possible. His food would be too hot, he would complain and then sit and mash his food which bothered both my spouse and I. He was stressed by trying to eat with us regularly and actually did better when I had him eat alone after we were done eating.

He began to use poetry to express some of the teen angst that he was feeling and had pieces published at which gave him great pride. He was able to complete a coming of age program at our church. This was an intensive one year program that helped teens to clarify their values, build a strong relationship with a caring adult member of the church through a mentoring situation, and participate in community service as well as have fun with peers. We knew this would be hard for Chet and it was a bumpy ride. But the director of our church was awesome working with us and with Chet to help him achieve all the experiences. He even made it through the vision quest and overnight camping experience. The vision quest involved sitting in silence somewhere and we worried greatly over whether he could do it. The overnight camping we worried that he would get too wild and out of control as the night wore on and his meds faded off. In an odd form of luck, they had horrible weather for the campout and all that extra energy was effectively and appropriately poured into helping other campers stay dry :-)

We managed a number of family vacations with a variety of successes. The Puerto Rico trip was probably the best. We also had successful trips to the White Mountains. What worked the best for Chet but grew wearying for us, was returning to the same place year after year. He craved a familiarity, even to the point of wanting the same bedroom in the same cabin. However we were willing to do this if it meant we could get away for a time as a family. Our worst vacation was probably the year we broke from that pattern and went to Acadia in Maine for a week of camping and hiking. We rented a travel trailer and Chet was convinced the pop up was going to tip over and could not settle down at night. He hated the rocky shores which were unlike his previous beach experiences and became quickly chilled by the water. He began to act out so badly a weeks vacation became 3 days in a cold foggy h*ll and we left early for home.

I had also spent a great deal of time on the net researching what Chet could really be all about. It was clear to my spouse and i that it was more than ADHD. I had friends with kids who had that dx and they didn't act like Chet. They might be active, but they ate well. They didn't focus on repetitive actions or obcess about an activity or passtime. They in general had better social skills. I began to read about Aspergers Syndrome and found that Chet met the criteria for it. I talked with our Dr who agreed that this was likely, but without actual testing would only label him as ADHD and "personality disorder unspecified." I wasn't worried. If we knew what was going on it gave a way to find a way to deal with him and a way to communicate most effectively with him.

We started trying to help him find a job. What would be the best fit? Clearly he was bright, but he had a lot of trouble following multistep directions and remembering details. Even as a young adult, he had to be reminded to wash at night, shave in the a.m. change his bed or come to a meal. He filled out application after application at grocery stores where stocking might work, or carriage retrieval. He filled out applications at fast food places where so many teens get a start, and small local stores. In many cases it looked like a sure thing till he got to the actual interview. There his social skills fell apart and perhaps due to nerves, became worse then usual. We practiced mock interviews at home. No luck.

I applied for SSI for him and we were sent to meet with a Dr. who would decide for Social Security if Chet could work. He talked with Chet one on one for 2 hours and decided that he was fully capable of working. Our claim was denied. I decided to appeal and was lucky enough to have my health insurance pay for a neuro-psych eval for Chet. It was intensive and a one inch document confirmed that Chet had Aspergers Syndrome and a host of other potential issues. I submitted this to Social Security and within a week our claim was approved retroactively.

At roughly the same time, we contacted Mass Rehab and they agreed to evaluate him in a sheltered work environment for 30 days. I drove him back and forth. It was a failure. At the end of hte month they met with us and with Chet and explained that he could not be counted on to follow directions that had been explained to him. He had injured himself multiple times because of not following directions. He had involved himself in other people's work and issues when he had been asked to stay at his own work station. In short, someone with Down's Syndrome was more effective in the workshop environment and had greater productivity than Chet had. At about this time the SSI had kicked in and they suggested that we pay Chet's SSI to them to have him continue participating at hte workshop. They said that perhaps he would learn to work by doing so. I said it didn't make sense to give all the kid's money to them when he wasn't even earning more than $20 a week at the workshop. Chet agreed that this was fiscally unsound. His disappointment at the workshop evaluation was tempered by his excitement with his retro check and a chance to do some serious shopping. He chose a new memory foam mattress for his double bed, bought a laptop, some CD's and a lot of new clothes.

Meanwhile i was sure there was something somewhere. I was also increasingly sure that Mass Rehab didn't have answers for us. They had offered to continue meeting with us to help Chet but the meetings made things so much worse. They had access to the neuro-psych data and yet they either didn't understand it or didn't use the information. For instance they would say "I think Chet might do well with the furniture refinishing program in Roxbury." Chet is a concrete thinker. He heard "I am going to be part of a program for furniture in Roxbury." But this wasn't the case because the meeting was much more stream of consciousness for the staff involved. Someone else would pipe in 'oh no, that is only for people with such and such a diagnosis." Someone else would say "but maybe such and such a grant would cover it?" Still another person would say "no they phased those out months ago." They would throw out acronyms for agencies which baffled Chet. They would openly talk about how he didn't meet DMR guidelines but wasn't fully functioning. It was demeaning in the manner in which it was handled and I hurt for my son. Chet was confused and angry. He would rage for days after these meetings, sure that the people involved were ignorant and didn't know what they were doing. (truthfully it did sort of come off that way but his reactions were typically Chet and very extreme).

I suggested to Chet that we look for volunteer opportunities for him. My private theory was that volunteers are sometimes cut a bit more slack than employees. His eccentricities might be more tolerated if he was volunteering. Meanwhile it would give an opportunity to work on the social and work skills that he needed. I found a place via a United Way site which was looking for help. They packed food for the local Meals on Wheels and were not too far away--about a 12 minute drive. I spoke with the people there and explained about Chet. I said he loved to help, but needed clear simple instructions and frequent checking in to be sure he stayed on task. They were fine with trying him out. He went once a week and my spouse was responsible for driving him back and forth. He loved it there and was well liked by the majority of people who commented on how very helpful he was. After 6 months, the boss there offered him a job. I called Mass Rehab and told them to close his case.

Tuesday, June 17, 2008

Chet's journey part 3

As Chet became old enough for kindergarten we worried more about finding the right school setting for him. It was clear he was bright. He essentially had taught himself to read by age 5. He knew number facts and could count, and do simple math. His learning deficits centered primarily around social issues--impulse control and aggression, and motor control. He had atrocious handwriting even for a young child. However he was also left handed and I didn't know how much to discount because of writing being harder for lefties. Also we had begun to notice that he had difficulty recognizing colors.

Due to a September birthday we were able to start him late in kindergarten. That we hoped would help with some of the maturity that he seemed to lack. We chose a parochial kindergarten with a low pupil teacher ratio (2 teachers for 16 children) and hoped that this enviroment would allow him to flourish. It was also a 1/2 kindergarten; we knew he was not ready for a full day experience. Yes, he'd have the energy but not the ability to focus. Kindergarten actually went pretty well. He did better when he was a morning session student than when they flipped 1/2 way through the year and he was an afternoon student. His focus definately showed a strength in the morning. The teachers liked him and did well with him and though he made no lasting friendships we were able to facilitate a couple of play dates for him.

However first grade was different. There were two kindergartens at this school which were merged into one first grade with one teacher. We hoped for the best because academically we felt he was getting a good education. By the winter break however it was clear he couldn't contain his behaviors enough to be in such a large class and we moved to a public school class. Again we had been lucky enough to find a very small class with a good student/teacher ratio and were able to make it through the year. Homework frustrated Chet. He was constantly told by teachers that his work was too messy (which it was.) We found at an eye exam that he was color deficient and that was the reason he had such difficulty telling colors. It shouldn't have been a big deal. Not everyone is an artist. But preschool and elementary kids do a LOT of coloring! They add problems and are told to color all the ones that equal a certain number a specific color. Chet would do the math correctly and pick the wrong color. We kept explaining he couldn't see the colors as we did (and due to fidgeting had usually peeled off the papers which would have given the name to him) and received little support in the matter.

By grade 2 we were looking at core evaluations. It was determined that he had ADHD and that he also had underdeveloped muscle strength in his hands and arms. This could have been a result of early malnutrition as a baby. OT was suggested to help. Professionals determined that a small class size, the OT, and a token economy of stickers or rewards would help him work to achieve better results. Additionally he was no longer supposed to be graded on his penmanship.

We soldiered along with decidedly mixed results. Chet wasn't all that motivated by token economies. They would work for a short time but the real problem was that there was nothing that he felt so passionately about that he wanted to really work to earn it. He liked to read and i wasn't going to take reading away from him. He wasn't hugely invested in TV was unable to really do video games, had few if any friends, didn't like to eat, etc. OT helped somewhat but his penmanship would always be a challenge. As he progressed through school scribing was occasionally added for him when it became time to try and write down assignments. We were allowed to write homework assignments for him if it was a long report, or to help him type it on our computer. Homework took longer and longer as he progressed in school and this too became a problem. He simply couldn't spend hours on homework and we kept in dialogue with teachers to try and keep this reasonable.

Socially he became worse instead of better. Primarily I think this was a function of the fact that he was sort "stuck" developmentally at a very immature level where social skills were concerned. Other kids for the most part had continued to progress and they had little patience with his efforts to make friends. They considered him a pest and weird and the crueler among them also learned that he was incredibly naive and would do anything they said for him to do. Especially if couched in terms that made Chet feel they were his "friend" he could be counted on to do or say virtually anything. Because he was loud about it and had such poor communication skills he was more frequently the person in trouble, as opposed to the person who instigated the behavior.

By grade 4 the principal met with us and said that the staff had determined that Chet's needs would best be met in an inclusion classroom at another school. They had more people trained to handle special needs and while they didn't believe Chet was causing problems on purpose, the fact was problems did exist. So off we went to the world of inclusion classrooms. The first year went quite well and we became hopeful that perhaps things were levelling out. He had an aide and a wonderful teacher who really was able to bring out the best in him. She was quiet and patient but firm and he really blossomed. Sadly all the progress ended with grade 5. Grade 6 brought a new special ed teacher who had a personality that did not mesh well with Chet's. He was always a person who people either loved or hated and it was clear that just by breathing he managed to get on her last nerve. He was mainstreamed for a couple of classes due to his intelligence and in those classes although he had an aide, the teachers were remarkably intolerant of any deviation from accepted classroom behavior. He began to serve detentions for such horrid offenses as pencil tapping ( a nervous habit he could not stop)

Increasingly the social skills worsened. There seemed to be a wider array of negative behaviors in the contained classroom and Chet decided to try them all on for size. The school cafeteria was also extremely noisy and this made it very hard for him to eat anything and return to the classroom with any type of self control. We explained over and over that he needed to eat to keep his blood sugar up and asked for alternative eating arrangements. None were made and when I visited the school I could literally hear the yelling and chaos from the cafeteria in the parking area near the school. There was no way Chet could handle that and no wonder that he came back to class after lunch angry and wild.

A classmate told him that girls like to have boys ask to have sex with them. Chet believed him and followed a girl around that he liked saying he wanted to have sex with her. The parents considered filing charges, we tried to explain, both to the parents and to Chet what was happening. We worried and got more and more stressed. Finally at the winter break we suggested that we homeschool him. The school practically cheered with joy, so much so that they gave us textbooks and teachers editions for the first two years we schooled him. Chet was angry,
change was unsettling to him and although things were bad at school, it was the "devil he knew."

Over the winter break we visited friends in Puerto Rico for a week and with a few exceptions, Chet did very well there and enjoyed himself greatly. The hardest parts were the plane and limo rides. Again he got so overwrought from tiredness and waiting that he bit my partner and struck at us.

Homeschooling was both fun and challenging. Keeping him focussed was always hard but we found that he really did LOVE to learn. He wanted structure and we posted his class schedule on the fridge and he really began to blossom. We became increasingly active at our local wildlife sanctuary and he became a species monitor there. His job was to keep track of a bird's nesting habits and then input the data and give an oral report at a volunteer recognition event. Amazingly he did this very well. We began to see that socially he was more likely to achieve when it was with older people, older teens or adults. Peers still found him "weird."

We continued to homeschool through highschool. He took some AP classes, and with few modifications (we did limit the foreign language exposure as he had enough trouble learning to use English effectively and correctly. Trying to memorize a foreign language totally frustrated him.) After he completed his courses, he took about three months off and then he decided to try to take the GED. We offered to do some brush up work but he declined. He took the test with only a modification for timed testing per his original IEP and he did well. He passed everything and most things well above the minimum standards. He was thrilled and we felt that this was some small proof that we had not made the wrong choice with homeschooling. But what next?

Monday, June 16, 2008

Chet's journey part 2

Chet grew healthier the longer he was with us, and it was clear that he loved us. He didn't like to cuddle but he would run and give hugs, and the pictures of him as a young child show a big wide grin in almost every shot. It became clear that he was very bright. He had questions about everything as his language skills developed and an amazing memory. He went from family day care (3 hrs a day) to a preschool environment. Our thought was that with more children to play with and more choices to challenge him intellectually that there would be fewer behavior issues.

He enjoyed preschool but the behavior issues remained and in fact, increased. When he got over excited he would bite children and we felt that we were always being called into the directors office to discuss his "issues." Additionally the school had an enforced nap time. Children didn't have to sleep but they had to be quiet. They couldn't read a book. They couldn't watch a movie. They had to lie there and be still. Chet couldn't do this and the school couldn't offer us an alternative. So we started picking him up before nap time despite having to pay for the half day session and not getting a 1/2 day experience. We continued to believe that many issues were adoption related, and in particular orphanage related, but by age 3 the school pressed us to have him "evaluated."

I was angry. VERY angry. This was my baby and sure he was different but I didn't think the issues or differences were insurmountable. But the message was clear. Evaluate or leave. Despite my issues with the school, they were really the best school in town and we did the evaluation. Which was stupid. The psychologist who did the eval told us afterwards that Chet couldn't sit still for the testing and exhibited a high level of ADHD. Then in the next breath told me that the test is not geared for a 3 y/o child and that at 3 he completed more of the questions than a 5 y/o typically did. I hit the roof. How could you fairly evaluate him if the tool for measurement was so flawed. In my opinion there was still no proof that his differences were severe. The psychologist suggested I might need medication to help me re-evaluate my somewhat impassioned response and we left. Went to the school and explained the results and they agreed to continue working with Chet.

By age 5 though I had lost the med battle. Still biting, increasingly physical and impulsive even I could see that something wasn't developing as it should. I could not teach him to hold my hand when we were crossing streets. He would run ahead and never recognized coming to a street, would just continue charging across. He was still a biter. He couldn't stop any activity once initiated, even when given a verbal cue " in 5 minutes we are going to put the game away". He started a regime of Ritalin, primarily because he would have been thrown out of the pre-K program he was in without it. The results were not all that spectacular. Ritalin is a weird drug. The Dr. told us that 1/3 of the people who take it have no benefits, 1/3 have some benefits, and 1/3 have wonderful results. We were in the moderate benefits range but had to be careful with dosing as the "rebound" when it wore off at night was intense and made our home life more challenging than it all ready was. Additionally it depressed his all ready poor appetite and eating was even more of a struggle. I agonized over whether this was the right choice.

Our Dr. recommended a play therapist saying maybe this would help. We entered into the wonderful world of therapy. I tried to be open minded about this, despite initially feeling that this was somehow a slap at our parenting. Except that when we met with the therapist, she said we should run workshops on how to parent difficult children. That she had no new suggestions for us, but to keep on with our present course of action. Meanwhile she would work with Chet to try and help him establish better boundaries and to help him learn to stop when told to. She could see how very hard we had to work to keep him safe and validated much of what we did. That felt good, but a part of me felt a bit let down that there was no "magic bullet" out there that was going to enact a more profound change. So we continued on with the play therapy. The therapist was changed to a man thinking that perhaps he needed a male image in his life. Months went by and finally the therapist himself admitted that he felt he was getting no where. Maybe we should try again when Chet was older he suggested? By now the cost of the therapy was an issue for us as well. My insurance only covered a very small # of visits and the weekly visits to play games had long ago used that up. I had purchased additional insurance to help cover the added visits but it was a bit of a struggle. And the fact that he played games there when he played games at home with us every day and nothing seemed to change. . . it all seemed totally useless. So we ended our therapy connections and soldiered on.

We read book after book. I read everything I could on ADHD. We tried dietary modification, homeopathy, dye free living, token economies and more. Pretty much you name it we tried it. I felt like I was searching for the Holy Grail, a magical solution that would help my son to participate more fully in the wider world. I read about how to raise your spirited child, how to enhance your child's self esteem. I read, and read and read. But we also parented and lived. It wasn't all horrible. It was hard. And it was right about then that I grew to passionately hate labels. We ran the childrens program and our church and our minister in a moment of crassness introduced us to a new family not as the heads of the religious ed program but as the "Parents of that little ADD boy." I was shattered. Above all I wanted Chet to be seen for who he was, not as a label of letters that limited him or allowed others to pre-judge him. There was so much about him that was good and i wanted the world to know those parts of him as I did. He loved to hike, he loved to play at the beach, and would dig in the sand for hours. He loved to read and be read to. How could such a questing little mind be labelled?

Friday, June 13, 2008

Chet's journey part 1

OK we aren't simply built with love. That sounds trite and sort of Brady Bunchish and we are so not! :-) But we are glued together with love. We hang in there. Even when it is really hard. Our four children all have very diverse personalities and needs and learning how best to handle each one's needs will probably always be a work in progress.

For a long time I thought we could only have one child. Our eldest came home at 15 months from far away India. The wait was excruciating. We got a placement when he was 6 wks but it took that long for the paperwork to grind through two countries and get him here to his forever family. I remember how bad the wait was. We got monthly updates which were sort of a "good thing/bad thing". Reports that told us of the serious illnesses he had suffered frightened us and kept us awake with worry. Reports of the milestones he made reduced us to tears at the "firsts" we were missing. First tooth, first step, first word.

But he was finally home, a week before Christmas, thrust into my arms with the adoption agency head saying "all he needs is a room full of toys." And naively I believed her. Perhaps fueled by endless optimism, youth and the fact that I had no other children to compare him to, I was truly sure everything would be all right. There were signs I should have noticed and WOULD notice now as a more experienced parent. There were signs professionals should have noticed and i have no idea why they didn't.

When stressed he banged his head. While this is not necessarily an indicator of autism (though it can be) it also can indicate sensory deprivation for children who come from orphanages as he did. He had no "tickle" response and I remember that instinctively I did know that something should be done about that. I massaged him with lotion every night after his bath, varying the intensity of my touches until one day, he actually giggled and pulled his little foot away from me when I rubbed it.

He would become over excited very easily and screamed for at least 45 minutes non stop every afternoon. He raced from activity to activity while awake only to finally fall asleep practically after supper. He never wanted or even tolerated the concept of a nap. We adapted, actually I adapted happily. I had waited so long to be a parent that I didn't resent the fact that shopping trips had to happen first thing in the morning and that a trip to a restaurant would be at 4 p.m. at the latest. We carried a rucksack of toys and manipulatives everywhere we went to entertain and engage him. We read to him often, trying to immerse him in his new language and culture. I was sure if we could give him language that many of our difficulties would disappear. My partner was less sure that all was well. I had initially been the person who wanted a child. I had brought the idea of a "family" to her and sold her on this. Now this active, angry little person was part of our life and she was not always sure that she was happy about the changes that becoming a parent of a high needs child brought to us.

His high energy was not always a bad thing. We are very active and love to hike and from his youngest days we hiked. Part of the way he would be on my back in a carrier but many was the time the carrier was empty and he was racing along beside us. He did find language and he was a voracious learner. He liked to explore new things as long as they were not food--he had a remarkably small list of foods he would eat and a prescribed way that he would allow them to be presented to him. He liked music. But he still raged every afternoon and I would tell my exhausted partner that things would get better. We needed to find what triggered the outbursts, we needed to make a calmer environment and make sure he wasn't overstimulated. There was never a doubt that he was ours forever, and I was sure that somehow there was an answer there for us.

Thursday, June 12, 2008

New Blogger

I am pretty new to the world of blogging. I don't even know that I'll keep up with it! What makes me think I have time for something like this? I have a large-ish family--4 kids, a dog a cat and of course my beloved wife. I have a full time job and a part time job. And I want to spend free time sitting here writing??? Yet maybe it is a good thing to try and carve out a few minutes every once in a while. Maybe this is a way to get a fresher perspective on things???? It sure seems to work for many others so i guess I'll give it a try.