My daily reflections

Monday, October 16, 2006

Too little time!!

Sever's Disease: A Common Cause of Heel Pain --
Friday morning I took Matthew to the doctor. He has been complaining about his feet hurting esp. his heels and has been walking on his tiptoes for a while now. He does walk unusually at times and has a strange gait. He woke up Thursday night crying that his feet hurt. The link above is what Matthew has. The doctor had me buy heel cups for Matthew's shoes. Also he needs to take ibuprofen for the inflammation. It will take while to get better and the dr. said you can have flare-ups. It will be challenging to get better because Matthew is active!!!
Saturday morning the kids had soccer. It was not a good time. Matthew was cranky and cried lot. Amanda had a meltdown before we left and was irritable and weepy too. Frankly I wanted to cry because it was too early in the morning and I really would have rather stayed home. LOL!
After soccer I had to take Amanda to the doctor yet again because her cough sounds so horrible. The dr. said she was wheezing and her lungs were filled with muocus. Now he added pulmacort to her nebulizer treatments. We need to do them 3x a day plus her singular and flonase and reg. meds. The problem is Amanda hates to do the treatments and it is such a battle. The dr. said her asthma is getting worse with age. It is likely that it will be a lifelong struggle for her. He said we have to be agressive in the treatment. I will start using a peak flow meter too to monitor her breathing because she wouldn't tell me when her breathing is bad. Sigh...........
Saturday afternoon we had to tackle the dreaded Home Depot for items for the kitchen "remodel." It was a rough hour+ but we found everything on our list.
Saturday we went to a big party for my sister-in-law's 50th birthday! There were a hundred people there and lots of extended family. Both kids danced the night away and had a ball! We stayed till 10:30!
Today the kids had their swimming lessons at 12:30. I went to mass at 8am and then drove Courtney to work. Carl and I worked on the kitchen for a while in the morning too. Then around 2pm we went to my parent's house for my Dad's birthday. The kids were okay...a few issues here and there but manageable. One good things is that I didn't have to cook this weekend much because we ate ate at both events!
The week ahead is busy but at least Friday we are going away for a 3 day weekend! Yahoo! I need a break. I vow not to worry about money this weekend and just enjoy our time together as a family! It is our first vacation in ages.
Adoptedby John Fischer

“His unchanging plan has always been to adopt us into his own family by bringing us to himself through Jesus Christ. And this gave him great pleasure.” (Ephesians 1:5)
I know something about this feeling.We have an adopted son, and the pleasure he has brought us has been unequaled.And I thought I was doing him a favor.
We have two of our own who are now adults and pretty much out of the house. This new guy could be our grandson.I often tell people having a child at this stage in life is like being a grandfather without having to give the child up. I know grandparents are supposed to like the fact that they can return their grandchildren to sender, but in this case, we are doubly blessed because that would be very hard to do, as attached as we are.
What’s really going on here is something I’m not quite sure I can explain, it’s just that I haven’t loved anyone in quite the way that I love my adopted son.There is no question that he is mine. It’s not like he’s in second position or anything less than my own.In some strange way he is more mine than my own, and I know that I can’t explain that. The fact that he doesn’t belong to me by birth means nothing because he belongs to me anyway.I’ve always loved him.He has my name.I have his papers.
I grew up in a family that did not look very favorably on adoption. I had a cousin who, according to the adults in the family, was always causing trouble. And I always heard she was trouble because she was adopted.Bad blood. Should have stuck to our own. Never know what you let in otherwise.If someone even hints of this kind of thinking in regards to my adopted son now, they will meet with my wrath, and it will not be a pretty sight.
By the way, I haven’t been in touch with my cousin very much but when I do talk to her I realize how wrong we all were about her. I don’t know of anyone with more love and compassion than this person.And she will do anything for you at the drop of a hat.She has so many legitimate reasons to be resentful, but she is not.
Now here’s the point.How I feel about my son is just a small picture of how God feels about you and me. We have all been adopted into the same family. No one can degrade us or take us away from where we belong.And there’s a whole bunch of us who, as brothers and sisters, share this incredible privilege together. And here’s the catch: God did this so we could bring him much pleasure.I understand this now.

John Fischer resides in Southern California with his wife, Marti and son, Chandler. They also have two adult children, Christopher and Anne. John is a published author and popular speaker.
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When I read this e-newsletter it brought out many of my feelings about adoption. I love all my children......they are abundant blessings from God. I love the saying about an adopted child- You grew not under my heart but in it! How every true. I once heard someone say the same thing about not wanting to adopt because of "bad blood." They were talking about our adoptions and didn't know I overheard their comments. I can't say I wasn't angered by their ingnorance. Yet it didn't mean a thing to me because I have no room for that kind of emotion. It just brings me to a place a don't want to be. A person like that needs prayers to open their heart and mind.
We have been blessed by our adoptions. I feel it is God's will that I am Matthew's and Amanda's mom. I just want to be worthy of my vocation. I know many adoptive moms and they are some of the most loving, compassionate, determined and strong women I know. Meeting them and getting to know their families is yet another blessing God has bestowed on me......................
I also have a yahoo 360 page. I have been blogging on that faithfully and need to transfer those to here! If you check out my profile you will find the link to my webpage and can check out my updates.

Thursday, September 28, 2006

Break-Away Goals For Hours At A Time, Children 4 to 19 Can Put Aside Their Disabilities And Get Out On The Field With Buddies For Some Good Fun

By MELISSA PIONZIO Courant Staff Writer September 24 2006 TOLLAND -- Looking sleek in a vibrant turquoise and black soccer shirt, Scott Langner crouched before a wide goalie net, his hands outstretched, his eyes hidden behind fancy mirrored sunglasses. "A goalie does this," said Langner, as he threw the soccer ball hard across the field. "I like to play soccer. I get to touch the ball, but that's cheating for other players to touch the ball." Langner has a nonverbal learning disability, which used to keep him from participating in organized sports. For years, he watched from the sidelines as his older brother, Kyle, played soccer, baseball and basketball and often asked when it would be his turn to play, said his mother, Collette Langner of Tolland. "I always gave him the excuse, `You're not old enough,' but one day he noticed a boy on the field and said, `Mom, that boy's in my class, how come he can play?'" she said. "The following fall, TOPSoccer was formed and Scott was able to play. He was so happy to be out on the field." That was in 1998, and Scott Langner, now 19, is still a member of Tolland's TOPSoccer team, a community-based program designed and administered by US Youth Soccer to meet the needs of children ages 4 to 19 with physical or mental disabilities. Although his disability affects his social communication skills, the soccer field allows Scott and his teammates to just be kids enjoying the sport. "He has the opportunity to interact with his peers, kids his own age; to be able to talk without having other adults always interpreting what he is trying to say," said Collette Langner, who is also the director of Tolland's TOPSoccer program. "Scott sometimes will go off on tangents and talk about other things, and the kids will always be interested in what he has to say." Tolland's is among the 40 TOPSoccer teams in Connecticut, said Marc Glass, director of recreation services for the Connecticut Junior Soccer Association. He said there is room for more. "There are 40 teams, but that's not enough," he said. "I think every town should have something like this for the kids. It takes some organization, but it's not very hard to do and there is some money from the state available." TOPSoccer teams are open to any child with a disability. Registration fees for the Tolland team are the same as the town's parks and recreation department soccer league, and include a ball, uniforms and an equipment bag. The 24 children who play on this year's team are from Tolland and nearby towns including Coventry, Ellington, Ashford, South Windsor and Vernon. "A lot of parents don't know this is going on," said Tolland resident Todd Lentocha, whose son Austin plays on the team. "It's good on a variety of levels. Austin's brother and sister can play soccer and he knows he has his own thing, his own team. It also gives mom and dad a break, which is nice." Eleven-year-old Austin, who has a rare genetic disorder called Rubinstein-Taybi syndrome, attends school in West Hartford. His participation in the TOPSoccer program gives him the chance to meet other children, Lentocha said. "He's a happy guy, very sociable. He likes people and as he's gotten older, he's liked [soccer] more," Lentocha said. "These coaches, these guys are special people. A lot of them don't have kids that participate, and I always marvel at these guys. They're just out there ... it's organized fun." On the soccer field, which is actually part of the fenced-in baseball field at Tolland's Crandall Park, the players shriek with excitement as they follow the path of the black and white soccer ball. To get to the ball, the players run, walk, limp or bounce along in wheelchairs with the help of local teenagers who volunteer as "buddies" during the teams' Saturday and Tuesday practices and games. "The main idea is to have fun with them, to get them to think about some other stuff if they are having a bad day, maybe give them a few pointers," said 16-year-old Tolland resident Mike Jablonski, a volunteer buddy since 2002. "It feels really good to see them play soccer and have fun, to see the smile on their faces. It gives me a positive feeling." The buddies run alongside the players during practice, steering them toward the ball with words of encouragement, which are sometimes spoken gently, but mostly shouted enthusiastically. The buddies accompany the players everywhere - to the bathroom, to get a drink of water and, if needed, for short breaks. During the practices there's often a twosome wandering the perimeter of the field, chatting quietly as they kick the ball. "We don't just have kids with disabilities on the field, we have both," said Laura Fontanella, who recruits buddy volunteers through newspaper ads and fliers to local middle and high schools. "The schools welcome this program because the kids can fulfill their community service project, and the buddies get to meet kids they may never have met. ... That strengthens the whole community because so many needs are met." From the sidelines, Ashford residents Ruth and Crawford Marley sit cross-legged in folding lawn chairs as they sip hot coffee and watch their 15-year-old son, Joshia Dougenik. Because of their son's intellectual disability, they say he is reserved and often pulls away when in social situations. But his five years on the soccer team have really helped. "You get him with a bunch of other kids and he's fine," said Crawford Marley. "He loves to play. On his own, he wouldn't bother, but in a group he loves it." At the end of each practice or game, the players and buddies gather around coach Tim Walsh for his pep talk and a reminder of the three words they use as their team motto - respect, pride and fun. "Did you guys have a good time today? Did you have fun?" he asks the group. "When you leave the field today, you're in school, remember you feel good, you made some friends, you were outside on a beautiful day!" Walsh, who has been a coach for the TOPSoccer program for seven seasons, had coached players without disabilities in Tolland's soccer league for many years. He said coaching the TOPSoccer players allows him to continue teaching the game he loves. "My whole focus has been to show them little moves so they learn more and have fun," he said. "In the beginning, my concern was that they learn soccer skills, but many of the parents said the kids just wanted to be out here with other kids for the energy, the noise, to run around and cut loose and have a good time." An informational DVD is available to those interested in forming a TOPSoccer program. For information, call Marc Glass at 860-676-1161; Tim Walsh at 860-871-9363; or Laura Fontanella at 860-870-0776. Contact Melissa Pionzio at
Copyright 2006, Hartford Courant

This is the soccer program that Matthew and Amanda partcipate in twice a week. It is a wonderful experience. All the parents and children arrive at the field with anticipation and excitement. It is hard to describe how it feels to be part of that magic each week. It is like when we walk onto that field, all the differences fall away. You see the faces of the parents relax and you see everyone share a special connection. No words need to be said because without words we all know. No one worries if their child cries, screams, refuses to play. There is no judgement, no embarrassment, only acceptance and understanding. It is alittle bit of heaven to me............just how I picture heaven. When my children will be whole, when they will be healed and will be happy forever.
Early on, I would sign my children up to participate in activities that were geared for "typical" children. Too often it would not be a postive experience for them. Too much stress and they would have a hard time keeping up and did not fit in. But you know I wanted them to be able to do things like everyone else. I have come to find what a gift special programs like topsoccer are. I hear the excitement and happiness in Amanda's voice when she tells me that she scored a goal or that the coach told her what a great player she is. I love when Matthew is excited about scoring a goal. Or when the kids hear their classmates talk about their kids are so thrilled to say they play on a team too. It is all about meeting your child's needs where they are at. We all have dreams for our children. I want to make their dreams come true.
Runs With Nuns Helping Troubled Kids
Daily Four-Mile Treks Help Them Get Past Anger, More
PORTSMOUTH, N.H. and ROCHESTER, N.H., NEW YORK, Sept. 27, 2006
'Dr. Debbye Turner, in background on left, running along with residents of St. Cahrles Children\'s Home (CBS/TDr. Debbye Turner, in background on left, running along with residents of St. Cahrles Children's Home (CBS/The Early Show)
(CBS) The sisters at the St. Charles Children's Home in Rochester, N.H. are using a unique way to keep their troubled charges in line and help them with their problems. They're running — not away from their difficulties, but toward progress. As Dr. Debbye Turner reported on The Early Show's "My New Life" segment Wednesday, the nuns and children staying in the home run four miles together every day, rain or shine, with remarkable results for the kids' emotional beings, not to mention their physical condition. Rewards include better control over anger and aggression, and better performance in school. "It's a very powerful tool to diffuse highly charged anger," Sister Maximilian, who got the idea, told Dr. Turner. "There are some kids that we know that if they don't run, they're going to have a lot of difficulty during the day." What about kids who can't make it through the entire four miles? "That's why I bring a buggy!" the sister said to Dr. Turner. She wheels them until they get their energy back. Dr. Turner was there on Labor Day for the home's annual 5K run in Portsmouth, N.H. She even ran along at one point (Dr. Turner has run marathons). To watch Dr. Turner's report, click here.
©MMVI, CBS Broadcasting Inc. All Rights Reserved.

I watched this segment yesterday on the Early show. I was moved by the nuns devotion and insights. I have found that this approach does work for frustrated, angry children, namely Amanda. When she starts to boil and get out of control, I have sometimes been able to turn things around simply by taking her for a brisk walk. The difference in Amanda after our "therapeutic walk" is noticeable. She is reachable and able to process her emotions and usually calms down and is redirectable. This just validates my purpose to continue to walk daily with both of the kids. It is vital that they find the tools to help themselves and recognize that they have a physical outlet that benefits them emotionally and healthwise. With our in home services Amanda is taught about the tools which she needs to access to help her better cope with her bipolar disorder. Though it is compounded by her FASD and other disablities, Amanda is making small steps in this. We take one step forward, two steps back but we keep trying.

Sunday, September 24, 2006

Today I took the kids to the Eastern States fair better know as the Big E! The kids always call it the biggee!!! LOL! My friend Jill drove and was a great companion. The kids went on the rides first. They are both daredevils and love to go on the fast and scary rides!! We walked around sampling foods and looking at many crafts and other exhibitions. We enjoyed seeing a show......a blues band who cooked while they sang. Amanda loved seeing the animals: horses,rabbits, hens, piglets, llamas, sheep, goats and hatching baby chicks. We went inot the state buildings where you can sample and buy specialities from one of the eastern states. Matthew loved the maple cotton candy. The italian ice was yummy too. Miss Amanda wanted to try everything! It was a fun day. All in all the kids did well. Amanda had one meltdown because the crowds and noise overwhelmed her. She was crying and complaining but thankfully turned it around so we could enjoy the rest of the fair.
Amanda is still not feeling well which didn't help today. Unfortunately I am not feeling too great either. I knew that three nights in a row of being up with Amanda would take its toll. She has needed a nebulizer treatment at 2am the last 3 nights. Hopefully we will all be feeling better soon. I hate those fall colds as the weather day hot, one day cold.

Friday, September 22, 2006

The ups and downs of sleep!

Yesterday was another busy day. Sometimes the details of our lives can be overwhelming but I just forge ahead and do what needs doing. In the morning at 8am, Amanda had an appt for her yearly physical. I don't know what I was thinking when I made an appt. for that time in the morning. LOL!! I had to be ready and out of the door by 7:15 plus set up a sitter for a half an hour with till he got on the bus. Thank godness Courtney lives a few houses down! Amanda's physical went well. I absolutely love our pediatrician. He is so supportive and will always step up and advocate for what my children need. He has decided that he should see Amanda every 6 months because of the diverse aspects of her care from mental health issues to her asthma and other pyhsical things that needs watching. He has decided that we need to be more proactive with Amanda's asthma and has put her on a daily regime of singular and flonase. Right now she has a cold and was coughing all night. Amazingly Amanda agreed to do a breathing treatment with the nebulizer this morning. I figure her breathing must have been bothering her because she always fights me. She told me in the car while we were waiting for the bus that her chest felt icky and that is why she did her treatment. I hope that Amanda already havng issues with breathing this early into the school year is not a precurser to a difficult health year. But at least I know our doctor will do all that he needs to keep her healthy.

Last night Amanda lost a tooth. She was thrilled and eagerly put the tooth under her pillow. I was up alot with her last night with her cold and totally forgot about my tooth fairy duties. Amanda told me as soon as she woke up that the tooth fairy didn't come. GULP!! What to do??? I told her maybe she just didn't see the money because it fell between the bed and wall. I went up to look with two dollars hidden in my hand. Amanda eagerly followed on my heels but I was able to hide it next to her bed and she was excited. Then my smartie asked why the tooth fairy didn't take her tooth. I said she probably couldn't because you were awake so much last night and she had to leave quickly without it! Amanda agreed and we will keep it there for her tonight. I am glad that I was able to turn that situation around. Whew!!!!!

Matthew also had a restless night. He is still wetting his bed and now that he is older the "goodnights" he wears are not cutting it anymore. Matthew was sopping wet in the middle of the night. I was restless because of Amanda's coughing and then when I dozed off again, I heard shuffling on the stairs. Matthew needed me because his bed was too wet. It was too wet to even set it back up as all his blankets were wet too. I set up a bed for him on the floor and he was fine with that. Now I have a bunch of laundry to deal with. We have been given lots of advice from limit his liquids after 6pm........very hard with my FASer who will not understand. We have not tried th alarm yet because Matthew was freaking at the thought of the anticipated noise if he wet. Also we could try waking him and have him go to the bathroom before we go to bed. Matthew is a sound sleeper and that is a struggle. Our pediatrician feels the med for bed wetting just masks the probem but does not cure it. I will talk to the pychaitrist and ask for her input.

The time passes and you just take it all as it comes and do your best each day. Though I know that I fall short at times I just keep on going...............

Wednesday, September 20, 2006

Today I took Amanda for a haircut. She has been having problems with her hair lately. She will just pull out strands of her hair and it is increasing. I believe it is a combination of sensory issues and anxiety. When we were at the hairdresser, she told her that she pulls her hair out at school because I am not there to tell her not to. Anyway, her hair looks cute! I posted a picture. Amanda is still struggling with her erratic moods esp. irritability. Yesterday form 3pm to 5 pm, she was very hyper, talking nonstop and giddy and silly. Then on the turn of a dime, she was moody. She had a big meltdown and was crying and yelling for almost an hour. She was a wreck till she asked to go to bed at 7pm. I just never know which mood will greet me. It is hard to deal with and very hard to help her. There are times, I cannot even talk to her or look at her and it will set her off.
I am very frustrated with Matthew's school sitaution. When he was 3 and 4 years old, he was in the special ed program but at 7 years old, "developmentally delayed" cannot qualify you anymore. Right now Matthew has a 504 plan but no IEP. He did have testing this past spring and at his PPT the school system disputed some of the findings, saying he was doing well at school. The pychologist who did his testing said he has major processing issues, anxiety, and is frustrated at school, along woth is adhd and fasd. She also said he was a ticking time bomb, behavior-wise.
Well, sadly I think things are just getting worse. Today, apparently there was some pushing when the kids were lining up and Matthew got into a pushing match with another boy and it escalated and Matthew punched the other child in the stomach. Matthew had to have his lunch with the principal. Then the kicker of this note in the communication book was that the teacher said otherwise Matthew had a great day. WHAT??? Matthew got off the school bus and lost it. Big meltdown.....wonder why. I tried to let him calm down on the way to the hairdresser. I asked how their day was. Amanda chatted and I said sometimes we have tough days etc. Matthew let it all spill out and he said he kicked the other boy in the stomach. He didn't seem that upset about being in the principal's office. It is very obvious Matthew's program is not working! He needs to have more supervision, an aide would be helpful. He needs to be in the front of the line. He told me yesterday that he had another time-out in gym and that he has a bad gym teacher. He said he tripped in gym and got a time out and she never believes him and he always gets in trouble. Just the fact that Matthew believes that is sad. It is clear that the school does not understand FASD and that Matthew has a disablity. He is feeling like no one understands him and that he is a bad boy and no one at school believes him. He thinks he always will get in trouble. I have another meeting in October to review Matthew's program and something has to change. Matthew is a great boy and I will not have him think he is a bad boy. The school cannot just view this as a child with a behavior problem. He is a child with disablities and deserves to have a program in place to help him succeed and feel good about himself!!! It makes me very sad.............and mad. You don't want to set off my "mad mama" mode!!!

Sunday, September 17, 2006


Today my daughter called me from work. She works at the mall at a gourmet food store. She was very upset. Nicole went on to tell me about this family that came in and that she waited on. The mother had a foster care pin on and was with two children and the grandmother. Nicole went on to tell the woman that we also did foster care and we had adopted two children. The woman said to my daughter that they also wanted to adopt. She said that they hoped to adopt the girl (who was 1o) and had already talked to her about it. Then to my daughter's horror, she went on to say they had already had 5 foster kids and "he" was the worst one they had. The woman was referring to the little boy who was 6 years old. The little boy heard everything they said. The grandmother said he was real trouble and a pain and they only wanted the girl!!!! Nicole was so stunned by the hurtful words that she was rendered speechless. She told me that the boy was jumping around and hyper but nothing more than what we deal with here each day. He was just a precious little boy! Even the ten year old girl piped up and was complaining about the boy. The mother said more negative things about the boy and they left. Nicole is still so upset and angry tonight.
I do not know why some people do foster care!! They hold in their hands the life of a child....his physical and emotional well being. The hateful words that were spoken about that precious boy are doing such harm to that precious child. My heart is just breaking. No child deserves to be treated that way!! Here is a family who has been entrusted with a special gift and is destryong the very soul of this child. It brings back memories to me of when my Matthew was placed in our home at the age of 8 months old. He had already been in 2 other foster homes. He was just dropped off at the DCF office on a Friday morning by his foster mom who said she couldn't care for him because she had a new job starting on the following Monday ( just a side note, that was a lie and she was found out because as soon as she returned home she called the dcf office and said she had an opening for another child). Matthew was brought to us by the social worker and the foster mom enclosed a letter in Matthew's things. I still remember her words. She said Matthew was a "pain" and all he did was cry and he was a real difficult baby. She also said other negative things about him. This poor baby was only 8 months old. How could be be a pain??!!!?? Matthew was the opposite. He never cried....he was dropped off by the worker sleeping and woke up to a bunch of strangers and didn't even cry. I did not hear his cry till he was with us a month or so. He only wanted to be fed sitting in his infant chair and holding his own bottle. He would not let me hold him and feed him. Basically he was already parenting himself. I was a new foster mom and didn't see the signs right away. Needless to say Matthew does have reactive attachment disorder. It is so important for those who have the care of these precious children in their hands to love, accept and nuture them!! I am not walking around with closed eyes and I know there are neglected and abused children everywhere but it breaks my heart even more to know that they are taken from situations like that only to be placed in another bad situation. I wish I could do more and make a difference for God's children. What I do is pray and try to advocate for them and effect a change in our world. There are many wonderful families who open their home and hearts to these special children!
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Friday, September 15, 2006


This is an article that was published in the latest "Iceberg" newsletter. There are two paragraphs that really jumped out at me and they are in red. Amanda suffers from mental illness that is compounded by her FASD. Matthew is challenged by his FAS. This gives a glimpse of what can work. I hope to see this evolve into a system of care that WORKS!! That my children will have a full and rewarding life and a peaceful spirit. Many people have misconceptions about mental child is not defined by her mental illness and every moment of her life does not involve her being in a mental straight jacket. That passage from the article is powerful and very real. I look at my children at 8 years old and I cling to the hope of a better tomorrow for them and for all the children with brain damage/mental illness. We can all effect a change. We have to push for change. I have professionals and services to support our family. I have had to fight for what they need and have built my own "system of care" so to speak. Some of this help has been beneficial and some has been sorely lacking. All these agencies/doctors/therapies need to work together in conjunction with the family to give our precious children the best chance at an independent and fulfilling life! Do we have all the answers as how to do but this is a beginning!

A New Concept of Mental Health
Part A: A Focus on Strength

by Charles Huffine, MD

Transformation? Recovery? Resilience? EBP’s? We are assaulted with a whole new glossary of terms unfamiliar to most advocates and most professionals. What does this mean? Are these terms the latest ways to put lipstick on a pig and make a failing mental health system seem beautiful? What does recovery mean when we are dealing with lifelong illnesses such as schizophrenia, or with damaged brains such as in FASD? I can assure you that this movement does make a difference. It is critically important for all in the fetal alcohol research, clinical services and advocacy communities to understand it. Recovery and the children’s System of Care initiatives that emphasize parent empowerment and youth guided care represent Value Based Practices and are an important counterbalance to the Evidence Base Practice (EBP) juggernaut which has hit many state legislatures and mental health administrations. Many of us have had concerns that we are moving too fast in implementing EBP’s in that we don’t yet have evidence on how to implement what has been found to be efficacious in research studies.
The recovery movement is truly a reform in the making. Like the System of Care movement for parents of children and youth with mental health issues, and adult family advocacy groups like the National Alliance for Mental Illness, the recovery movement was born after years of consumer frustration with mental health services. A maturing adult consumer movement began to articulate the word recovery. This concept gained momentum as we began to see more consumers demand a say in how the mental health systems of our country were organized. As part of this movement consumers became trained to deliver peer support services in mental health system. Most recently the recovery movement has begun to embrace children, youth and their families.

It is critical to realize, as we are assaulted with very evocative words such as “recovery,” that sophisticated proponents do not mean cure. Recovery in mental health, as in drug and alcohol treatment, embraces the idea of an ongoing process aimed at universal human aspirations for a good life. It embraces the brave notion that an individual is not defined by their illness or condition. A person with schizophrenia suffers greatly from their symptoms but every moment of their life does not involve them being in a mental straight jacket. If they come to understand their illness, tend to it expertly with medications and a safe lifestyle, they will have an opportunity to work, make friends, fall in love and grow old gracefully. The recovery movement declares that those who suffer from chronic and disabling mental health conditions have a right to a full and rewarding life and to a peaceful spirit.

The recovery movement seeks to offer hope to those with major mental illness that they can recover a lost life even with a severe illness. Furthermore they can demand from their service providers hope and encouragement for recovery. Children too can recover from childhood traumas and mental health conditions that have thrown them off track developmentally. We know what can build resiliency in children and youth and a mental health system ought to be helping vulnerable children achieve resiliency so as to not fall behind developmentally. Recovery for a child or youth with a mental health condition can be thought of as getting them back on track developmentally. They can overcome developmental disruptions from having been effected by a mental health problem, trauma, adverse social conditions or brain damage such as FASD.

Children with FASD have had assaults to their brain that will affect them their entire lives. As children the impact of fetal alcohol exposure will impact their psychosocial development unless they receive extra support aimed at preventing developmental disruptions. Many who have raised children with FASD, knowing these facts, cheerfully celebrate their children’s achievements and focus on what they can do rather then on their limitations. This strength-based approach is the core of a recovery process as it assures our youth with FASD grow and develop as normally as possible. Young children with FASD vary in their interests and aptitudes as do all children and, when offered the required structure and support, they too can develop their skills and emerge into adulthood able to find their spirit, their identity and personhood.
These goals for individuals with serious mental health and developmental problems such as in FASD can generate hope where before there was only despair and a broken spirit. Not everyone can or will achieve great things, become independent, get married or buy a house. Recovery involves embracing realistic goals and taking the path towards these goals as fast and as far as one can. Clearly this concept applies to human suffering far beyond mental health problems. The core of the concept can be made to apply to mental retardation, physical disabilities, even the aging process. It is about finding ones spiritual center and embracing hope and defining oneself as a human being first and foremost.

I do hope you can see that these ideas are profoundly new ways of looking at mental illness and disabilities. The strength-based approach is core to psychosocial rehabilitation and, in children’s services, to the wraparound process. But while such approaches are consistent with these service provision reforms, the recovery concept goes much further as it address such issues as values and meaning in life.

The recovery movement began with adult consumers angry with service providers who seemed to emphasize pathology and who cautioned those with a mental illness to not expect much in their lives. Consumers rebelled, initially speaking of themselves as “psychiatric survivors,” angrily refusing services and undercutting their understandable aspirations for a better life. The adult consumer movement matured and now embraces the supports offered by clinical services and research that offers improved and more evidence-based care.

Recovery and resilience concepts have major implications for the way parents and service providers approach youth with challenges from a brain illness or injury. When asked, many youth express dissatisfaction with their services. Their parents emphasize “safety first” from providers of services, but many youth feel that protective and restrictive services stifle their developmental aspirations, causing to become angry and refuse care. For many youth on the streets, self-medicating with drugs and alcohol places them in the parallel position that many adult consumers found themselves in after encountering non-recovery oriented services.
Instead, a recovery oriented youth service would help families and their troubled youth find a balance between safety and the normal risk taking that promotes growth. In an effort to help youth participate safely in normative risk taking service providers would promote resilience through harm reduction approaches in order to support a youth’s move toward independence and a fulfilling life.