Dear Long Line of People Who Do Not Get FASD. Read the Pamphlet and Listen to the Parents.

I woke up out of deep sleep early this morning with knowing I needed to go write, thoughts given to me out of the depths of my subconscious and deep within my soul and heart. I drug myself out of bed to not lose those words that will probably not make too much sense to those who judge, jury and complicate my daughter/son's progress and my parenting but will be understood by those who walk a road beside me as a parent of someone with FASD's. I have seen much written about the failure of mental health needs and the pipeline to jail, but for our kids with FASD it is much more complicated. They are faulted for being innocent victims of prenatal exposure to alcohol and the failures based on the lack of any help or even acknowledgement of any service system to find help and long term supports.

To learn more about FASD
http://www.mofas.org
http://www.nofas.org
http://www.fasdcommunities.com


This is a post which combines many of the experiences faced by raising my 5 siblings with FASD and the experiences faced by many a parent who have walked the walk.




Dear Long Line of People who not get FASD,
Here is a pamphlet on FASD. I have followed everything everyone has told me to do. My sons and daughters have been blamed, branded, faulted and failed because of the manifestations of a decision made long ago. She may not have known, she had an addiction but my children would pay the price for her illness. They was an innocent victim of prenatal alcohol exposure and they will pay a life long price. I have been blamed, faulted for my parenting practices, blamed, shamed and humiliated and we both have trauma from the lack of understanding of FASD. From early on a long list of people who could help tried, but couldn't understand and the lack of awareness caused me and them to be misunderstood.

Dear Next Door Neighbor,
You said my child you can come over to play with Johnny. I tell you that he has an extra need to be watched more carefully than the other children his age and you tell me that he can play and she will watch them. Shaking her head and whispering behind my back you tell the other ladies in the coffee clutch, that I am just "too overprotective" and treat my child as a baby. A few hours later and then come yell at me that my son did this, or that, or is terrible menace he is. Didn't I tell you that my child needed more monitoring than other children? My child may be only half his chronological age and would you expect a 2 or 4 year old to be able to be independent and fault them for being two or four when they do not play well with others? My child is hyper, impulsive and he will fly into the stratosphere of wildness without an external monitor. She is excited,  is happy, she shows it with his behavior and is way over the top. When kids get wild, what usually happens? Someone gets hurt, something gets hurt. My child just lost a friend, but the other mothers won't let my kid play with their child too. Every child needs a neighborhood friend. Mine has none. Why, because you did not listen to me. I told you we needed to watch, you said you understood, but didn't. The lonely world of a child with FASD. I address an envelope and send my neighbor a pamphlet on FASDs.

Dear Day Care Provider,
You called me today for the 3rd time this week saying my son was "acting up" in school. He is not listening to you. He is not following the rules. You warn me that my child is a brat. I need to be more consistent, I am not this or am not that. You gave my child a time out and he hit you. He will not sit on the stool, he will not sit at the table, he is disrupting the day, he is impulsive and hyper. I have explained to you that my son has Fetal Alcohol Syndrome. I have given you pamphlets on his prenatal brain injury. I have been through 3 day cares already so have planned ahead this time to help you learn about FASD's. You say that I am stressed, and tell the other teachers that it is because of my stress that he is acting out. I struggle to balance the walk of parenting with special needs while working, but not being able to count on being at work, taking phone calls about his behavior and having to drop everything because today was a bad day. Don't you understand that he needs calm structure to do well? But today you say you can no longer keep him due to his inability to listen and follow the rules. My son may be 4, but he is developmentally much younger. Would you expect a one year old to follow and remember the rules without assistance? Would you expect a two year old to be able to sit and stay planted for the circle time? Do you not understand that my child's prenatal brain damage needs different strategies to help him understand what you are asking him to do? Visual schedules and structure and rehearsals he will be able to get it and every day is a new day and we need to do it all over again. But he will not get a chance, he has now been kicked out of the fourth day care and he is only 4.

Dear Kindergarten teacher,
You called me today to tell me that my child needs to come home. She threw a tantrum and disrupted the classroom and she has behavior problems. When I enrolled her in school her early childhood and intervention records were given to you and the office. After testing you said my child was bright, she no longer needed any support. She got over her FASD. and her challenges. The IEP was denied, she didn't need any support, any services and she was a normal kindergartener. So why is my child send home from school for the tenth time this semester?

Dear Elementary Teacher,
You called me today to say that my child is not making progress and is failing. Who is failing? Didn't they tell me he was bright only three years ago? I know my child is failing, every night when he hits the door he is a unhappy mess. Tantrums, I don't want to do my homework, the little boy who used to have a spark of happiness gone, the rage of school failure comes home with him. You want to put him in a classroom full of behaviorally challenged students. He needs behavior modification, he needs to learn the rules. He may be able to memorize this or that, read fast, but he has little understanding of what he read, he doesn't have abstract thinking, he struggles with math. These are the hallmarks of a student with FASD and he is now being faulted for the lack of his abilities to do normal.

Dear Child Psychologist,
You sat with me and told me that I am my son's problem. I am not holding him accountable. You say that I do not have structure, that I am making excuses for his behavior. I handed you a pamphlet on FASD's. You tell me that I need to take him to a Psychiatrist for medication. You give him labels, he has ADHD, he has Oppositional Defiance Disorder, he has obsessive compulsive disorder, he has a mood disorder and his moods can fly from here to there. You tell me it is alll my fault. Fortunately, I can say that I am not the mother who caused this, I am not the mother who drank while pregnant. But I feel ashamed that I had to make an excuse and judge the mom who did? It was self protection, too many judging from every direction that made me do it.

Dear Sunday School Teacher,
You told me that my son was not welcome back. He is too disruptive to be in Sunday School. When he started I handed you a pamphlet on my son's FASD and asked you if you needed me to stay so he could be supported in the youth services. But you said parents are not allowed. Where is the compassion that Jesus taught? My child and I are now destined to stay home. No church, no love, no compassion, we are rejected and the one place where I find strength to keep going taken away. We will stay home as you requested, or try another church and over and over again find lack of understanding and support.

Dear Child Protection Worker,
You showed up at my home today because some well meaning adult made a report that my son told you we do not have food in the house, and when being quizzed agreed with almost everything you said. I hit him, I am mean, whatever you wanted him to say he agreed with. My son is a people pleaser, he will agree to almost anything anyone says to get the interview done, or to get to go get that ice cream cone you promised when he was done. I pulled out the pamphlet on FASD and you rolled your eyes. You looked at my walls with the holes, the pile of dishes on the counter and the mess of toys on the flloor, I could see the judgement on your face. When opening the refrigerator and cupboards they were loaded with food, my child had no bruises, but we are now branded and watched by the vary system he came from in the first place. No adoption support, no records, when I have called for this or that you say we do not have anything to offer. I am doing the best I can, my son just wanted McDonalds last night, not the beef roast, mashed potatoes and green beans I had made. He did have food, just not the food he wanted.

Dear Child Psychiatrist,
You are the fourth one in the last four years. This is another opinion for answers and differing medications as nothing is really helping anymore. My son does not sleep, he is explosive, he is depressed and he has tics from the psychiatric medications that have caused him to gain too much weight. The schools report me that I need to get more medication. Isn't the 4 drugs he is on enough already?
He doesn't sleep and the Clonidine does not work anymore. But amazing during the summers and school breaks it does. I explain that I believe it is the stress that school causes, the bullying, the teasing. But it is my child who needs to do to social skills training, and needs more medication. I tell you that my son is failing his 6th grade middle school classes and he is in almost daily detension. He has been rejected by his classmates and it is a lonely world for him. Take him off this, and add that, another medication that I will have to fight from the insurance company or Medicaid and I asked if this medication has been tested and is safe for children? I am told that this is needed and go home to research that it has never been studied in use in children and is not even usually given for his disorder and read the long list of side effects and what to watch for in my son. But I question giving it to him, but if I don't the school will calll, the child protection worker will show up at my door and I do not want to be charged with medical neglect. So against my own intuition I give it to him praying that it helps and does not worsen his already precarious mental health. I just keep thinking why they think medication will "cure" my child's prenatal brain injury that was caused by a terratogen?

Dear Attachment Therapist,
You are the next in a long line of places I am searching for help for my son. They say he has Reactive Attachment Disorder. He came from foster care, he had disrupted placements. He had been in three homes before arriving at my doorsteps. You hand me the books and guide me through the strategies of all the various attachment regime. My son keeps worsening. You tell me to be consistent, you tell me to not let him push my buttons, you tell me to give him consequences for his misbehavior. Today I tell you that it is not working and I am trusting my own research and tell you that you do not know what you are going. I am firing you. Kids with FASD do not understand cause and effect and when you ask me to use it you are not only going against what works for my son, but disrupting his attachment.
My son is attached, but everytime some well meaning adult changes the rule or misunderstands him he comes home to vent, let loose or blow up at the only safe place or person who will still love him despite it all. It is not that he is unattached, that home is the problem, it is that home is where he is safe to let go of the stress.

Dear Middle School Principal,
You called me today to say that my son was expelled for the rest of the school year. He got in a fight, and has been hanging with the wrong crowd. You put him in the class with those kids early on and he has taken on the behavior of the ones he has grown up with. My son has learned that it is much more socially acceptable to be a "bad" kid than to be "stupid" or "retarded". At home my child calls himself stupid, he suffers from depression. He is an outcast. My child has FASD and he will mimic the behavior of those around him. He becomes what you tell him he is. I reminded him that my child has an IEP and he cannot expel him without going through the process afforded him under special education law. It is a manifestation of his disability and I bring him home to call in the advocate and write on my FASD support group wall of my frustration. We have tried everything they tell us to do, he repeats the same mistakes over and over again and gets the same result. He needs to be understood and he needs more supervision that you are giving him. I hand him a letter to reconvene his IEP and another pamphlet attached to it explaining his prenatal brain damage.

Dear Coach,
You called me today to tell me that my son was being suspended from the football team right before the play off game. He is not eligible to play because he is failing his classes at mid term. He is in special education, he has an IEP. You were given the pamphlet on FASD and you have been doing a good job and letting him play on the kick off return team. His brother will still be able to play and now he needs to sit and watch on the bench. He was doing something successful and he is now being faulted for his teachers inability to follow the IEP, his lack of support and his brain damage. There is no way to appeal this decision? Next year we will add to his IEP a pass or fail stipulation, but according to the high school rules he still needs to have a passing grade to play. But if I add that to the IEP, he can play and the football season will be over before the send of the semester! But this year it's too late, at least you are letting him suit up and head to practice so he does not have to quit the team.

Dear Mr. Police Officer,
My son is out of control, his medications are not working, and I cannot keep him safe. You tell me that this is a family problem and walk away from my door. I am left to my own devices once again.

Dear Mr. High School Principal,
Please do not graduate my son. He has not passed his classes, he has not passed a final exam yet in the four years of high school. I have advocated, I have fought, but my son cannot do the simplist of chores, take care of himself, or cannot remember what to do next without a prompt. External brain? Do you remember my son has FASD? I hand another pamphlet of FASD and the print out of what will happen to adults with FASD without support? I tell him that 80% will need support, 60% will have trouble with the law, that he is at risk of finding his support in the justice system and most will have secondary mental health issues and he was born to be addicted.
I am told he is now 18 and he wants to graduate and even though he has the right to special education to 21 he wants to be just like every other senior and graduate with his class. You tell me that I am enabling him. I need to let him grow up. I hand you another document that talks about the need for an external brain and walk out the door saying that I am not enabling, but I AM ABLE-ING my son to protect him from being transitioned off the cliff to a world of nothingness and failure.

Dear Community Mental Health,
Today I brought my son in to see if he can qualify for help. I bring in the 4 inch binder of records of his testing. I hand you a pamphlet and a huge printout on FASD. You tell me that his IQ is too high to qualify for services. He has Adaptive living skills less than the 1%, he has memory problems, he carries a long list of diagnoses from ADHD, OCD, ODD, ASD, RAD, BPD, SID and all those diagnoses are in the DSM-IV but not his FASD. He doesn't qualify for services. My son is verbal, he has learned to act normal. He can hide his disability well. He is an excellent ACTOR. He knows the right answers, but you only quiz and do not ask for him to explain what he knows. If you did you would understand he answer would be "I don't know". So my son has no support services. You told me to go enroll him in community college, which I had already tried, but he couldn't pass the test to be enrolled. He had never passed a final exam in high school yet even with help from special education. They graduated him despite any real skills.

Dear SSI Interviewer,
Today Mr. SSI gatekeeper you sent a letter that my son was denied SSI. He can work, he can hold a job. I submitted the piles of documentation of my son's FASD from all the years of places I have tried to find help. But because he has a so called normal IQ you believe that he can do what is expected. Don't you think he would if he could? Doesn't the years of failed helps show you that he can't? Getting SSI is the doorway to employment support and with it Medicaid. He was cut off his adoption subsidy when he turned 19. Who will pay for his medications and psychiatric visits, the neuropsych an advocate told me to get to prove his executive function deficits and to explain his prenatal brain damage from alcohol.

Dear Judge,
I have handed the defense attorney the pamphlet explaining FASD. I have printed out the documents on working with persons with FASD in the court system. My son will not be able to do the steps of probation without help. The last probation officer told me that a person with FASD will require 10 people to be successful. He needs to stay away from trouble, he needs to go to AA and do his community service. Why is he in trouble? His friend told him to go find some money to pay his rent. He found it in the local subway store and left it outside on the curb when he realized what he was doing and couldn't understand why he still was in trouble. In his disregulation he left his jacket with his ID next to the cash box and he couldn't even understand how they found out and were knocking at the door. They put him back in jail because of his inability to take responsibility for his actions and he said what the probation officer told him to say. He can't do it.

Dear Mr. Jail Keeper,
I came today to see my son in his orange jumpsuit and his sandals. I handed you a pamphlet on FASD and hope that you will pass it on to those working with my son. I thank you for helping me sleep at night. I know that he is being fed three meals a day, he has structure, he is calming down, the voices that are spinning in his head are no longer present, he has a bed of his own, he will be getting his medications that I had faxed over from his psychiatrist which he ditched six months ago. He hopefully does not have access to the alcohol which he is addicted to which caused his prenatal brain damage. He is not going to be able to self medicate his mental health needs because he no longer has access. But I pray that you keep a look out for him, he is vulnerable adult and he is easily victimized and he I pray he doesn't model the other inmates behavior.

Dear Mr. President and Congress,
I will be mailing you a pamphlet and some information on  Fetal Alcohol Spectrum Disorders. There is little help out there for those who are born with prenatal alcohol exposures. There is little awareness to prevent this complex disorder. The funds are not enough, there is no service system or no door that opens up a place for parents who are struggling to find help for their children who were born with prenatal brain damage. They do not fit in the Mental Health system until they fail and develop secondary problems which they do. But even then the strategies are not effective as our children are not mentally ill, they are brain damaged. The
Developmental Disabilities world will not help most of the children with FASD as they have normal IQ's. It is well documented that those who get early intervention, have lower intellectual difficulities and stability have better outcomes than those who have more normal levels of intellect. Those kids adults, know a lot, talk a lot, can't do a lot without support. They need mentoring, a coach and assistance that will teach them and support them while they grow and may need life long support. But they can learn, they can break the cycle, but funding, education and research is needed.  Please Mr. President and Congress restore the money to the budget to support FASD and lets stop our kids from being sent down the pipeline from cradle to grave with being misunderstood and faulted for their prenatal brain damage.


Dear Lord,
I pray that you will continue to watch over my son, as you always have. Every night I pray that you help others understand FASD's. May we help raise awareness and stop other wee ones from facing a life of challenge from being innocent victims of prenatal alcohol exposures. May other parents can be spared the walk I have had to walk with my sons and daughters who I adopted with FASDs.  Maybe someday we will find support services for my son and others like him. I have done the best I could. I have tried to follow the pamphlet that no one else understands. Thank you Lord for the pamphlet, and thank you for my son. I know that someday when heaven calls him home that you will understand that he has reasons for his behavior and that you have mercy on him understanding that he was just an innocent victim long before he took his first breath. You gave him to me, to love, nurture, fight for and I know that you will heal him and someday he will at last find peace, hope and unconditional love. In the meantime I will keep passing out the pamphlets, I will keep writing and I will keep helping connect the dots for him while he walks the road of living with FASD.

copyright: Ann Yurcek 2/16/201

Paying it Forward and Helping to Fulfill a Christmas Wish. Creating a Miracle for a Grieving Mother

Twenty four years ago, my daughter Becca lay critically ill in the Pediatric Intensive Care unit at Christmas.  She was born with Noonan Syndrome. The doctors gave little hope for my tiny titan to survive. Heart failure, immune problems, JMML leukemia, RSV a killer of fragile babies, and a systemic staph infection she was critically ill. I had already almost lost her once when Becca's heart had stopped for l8 minutes when she was 3 months old, I could not lose my daughter at Christmas.   My husband had lost his job, we had fallen into poverty when our insurance companies had both denied her coverage, a million dollars in hospital bills with 5 children there was no hope for anything for Christmas.  I said a prayer... that prayer was answered and some unknown Santa's created a miracle for my family that Christmas night. I can never forget the miracles of that night and to this day I do not know who helped our struggling family fill my barren cupboards and filled my children's stockings. (The Christmas Story)

I promised that someday when I could, I will pay it forward and help God fulfill dreams and wishes and help others find hope in tough times.  I have been honoring my promise for years since.  I thought I had already done my secret work this year.

Last night I finally had a chance to check my email and my Google News alert for the day shared a story from Jacksonville, Florida of a mother whose wish is to bring her daughter home.  Her daughter Stephanie 26 had Noonan Syndrome. She had saved for a year to head to England for a dream vacation.

Stephanie died the day after arriving on December 8th.  Her mother's wish to bring her daughter back home.  $3000 they did not have.



Family Struggles to Get Their Daughter's Remains Home to US 
http://www.firstcoastnews.com/topstories/article/339148/483/Family-struggles-to-get-their-daughters-body-back-in-the-US?odyssey=tab


I couldn't sleep last night, I shared the links to the story to the facebook walls of the Noonan Syndrome communities.  Too many angels, too many losses.  Too many little candles lit and the picture tribute I made years ago posted to my facebook walls in memory of those who have lost her lives to NS.

This morning I wrote on the News Channels wall, asking for help to make her wish come true. The local fire department opened a fund.   I left a contact information to the Foundation and soon I got a phone call from Rebekah from the Noonan Syndrome Foundation,.  The reporter had passed on his number. I shared my information and soon I received a phone call from Catherine McCoy, Stephanie's mother.  Listening to her story and hearing about her daughter, I learned that not only has she lost her daughter, but she had lost two sons to Noonan Syndrome. One at the age of one and a half and the other due to prematurity in infancy. Stephanie was her third child who died from complications from Noonan Syndrome.  This Mom who has Noonan Syndrome herself and has now lost all three of her children to the devastating effects of NS. I cannot imagine her grief.

I promised her that I would help and somehow we would find a way to help her bring Stephanie home. Talking to her I asked the question if they had life insurance as many with NS cannot get. They have no funds for her funeral.

Making a few phone calls, we have a tax deductible donation site set up through First Giving to collect donations that will be given to the McCoys for getting Stephanie's remains home for her mother and family to say goodbye and try to help with funeral expenses. 

I also made another promise, we will see that Catherine will be able to attend the Noonan Syndrome conference in Clearwater in July if she wishes. She has never met another person with NS and maybe it will be something to look forward too.  Meeting Dr. Noonan and others with Noonan Syndrome needs to happen.

Christmas is a time of miracles. We are the Noonan Syndrome Community and family. When one of us hurts, faces a loss it affects us all. It dredges up our fears, our losses, our memories. 

For me I can never forget that Christmas so long ago.... I cannot stop until her daughter is home.  I made a promise to Catherine we will help find a way and help God create another miracle this Christmas.

Last month we nearly lost Becca due to error and complications from a surgery gone awry. Like Becca, Stephanie had restrictive lung issues. The stress to Stephanie's lungs enlarged her heart causing her to have a heart attack. Becca's restrictive lung issues almost cost her her life in early November. Because of our knowledge of Noonan Syndrome and connections with her dad's hospital and partners, we sprung into action and saved her life from aspiration pneumonia with her normal 48% lung capacity and the good lung in danger of collapsing. Becca has lowered immunities for upper respiratory and bacterial infections and she struggles with fighting systemic staph infections.

In my 24 years of being in the Noonan Syndrome world, I have seen too many losses. Too many wee ones and ones of all ages lost to this devastating disorder.



The Tiny Titan, did not give up once again. Becca was never expected to survive and I have lived each day knowing that everyday with Becca is a gift we were never expected to have. This mother is living my worst nightmare times three.

Please join me in making any size donation to help one of our own bring her daughter home.

It is Christmas, a season of miracles. A time for hope and for this family a season of loss. Caring for others, sharing in our joys and sorrows is what we are called to do and the Noonan Syndrome Family we can unite and open our hearts and wallets to a few dollars and together those dollars will add up to give another hurting family a Christmas miracle.

For Catherine McCoy join me in helping fulfill her wish and bring Stephanie home.

With reaching out to the Noonan Syndrome Foundation we have set up a First Giving Fundraiser. Stephanie's family needs our help to bring the body of their daughter home and fund funeral expenses. $3000 to get her body back to the states and a couple of thousand more for funeral expenses.

If you can, please help this family by making a tax-deductible donation to the Noonan Syndrome Foundation. The Foundation is a 501c3 charitable organization. The Foundation will make sure that all funding collected covers the return of Stephanie to her family and her funeral expenses. Any funding left over will be used to raise awareness of Noonan syndrome. For more information, please contact info@teamnoonan.org. Here is the link to make donations to the family: http://www.firstgiving.com/fundraiser/NSF/steph


On behalf of the Noonan Syndrome Community Worldwide, I offer our deepest condolences to the McCoy family on the loss of their daughter. I am putting up the angel tribute once again in honor of Stephanie and another angel with Noonan Syndrome gone too soon.

Literal Language and Misinterpretations with Kids with Special Needs.... Understanding Language Comprehension/Auditory Processing Difficulties

                                                       "You're in the dog house."

I would tell my daughter she is in the "doghouse". This is what she would think. I did not say that she is in TROUBLE.

For my kids with special needs the English Language and its abstract meanings of words can be confusing.  Think about all the different interpretations that we just understand that "throw" my kids.
That last part of that sentence would cause my kids to stop and look at me with confused expressions. No,  I would not "throw my kids" as they would think I just said.  But we understand it as an expression.

Language Comprehension/Auditory Processing Difficulties

Characteristics: Children with Asperger's Syndrome, FAS, some with Noonan Syndrome and other developmental disabilities generally interpret auditory information literally and concretely. They can have difficulty understanding figurative language, jokes/riddles, multiple meaning words, teasing and implied meanings.

Children are literal thinkers, meaning that they interpret words at face value. ... Children need correct information given in concrete language. For kids/teens/adults with Autism, FASD's and other special needs they remain a literal thinker just like younger children. It will not be apparent until mid childhood when they do not move on to understanding more complex auditory and abstract meanings of speech.

So many things can be a set up for confusion or even disaster. They will follow the instruction to the literal meaning and sometimes that may have repercussions or consequences and it will end in a blown up rage because they did what we said.

The first time I noticed anything with our adopted sib set was I told  them we were going to "RUN ERRANDS". They did what I told them, they ran in the grocery store, they ran in the mall, they ran in the parking lot. I asked them to walk and one of them told me I told them that I told them we were going to RUN ERRANDS make up my mind?  It took me a few minutes to understand that I did say "run errands" and had to correct my instructions.

I knew what I had done because Miss Becca with her Noonan Syndrome can be very literal and I had to teach her the double meanings of many phrases.  I told them to run and they followed my instructions.  From then on it was we are going to the store to buy groceries, to the mall to ....  and we walk in those places.

A mother said to her child, "Stop back-talking to me". The child said, "I'm sorry Mom, I'll talk to your front."  A prime example of literal and concrete interpretation.

If said to a teacher said the same phrase to stop back talking and responded with the talk to your front statement, the teacher would think the teen was a smart A.... and consequence him with a detention. The teen would escalate because they would not understand that they offended a person in authority.

A friend today gave me the topic of the post when I was talking to her on the phone. She was with a little one who has FASD for the day.  They were at a craft fair and the little girl asked my friend when was the "Craft Show"?  They had already been through almost the entire auditorium.  My friend was taken a back and I explained her confusion.  She was thinking she was going to a show, like a play, movie, etc. I told her to explain that "the people who make the crafts are showing their things and selling them".  It now made sense.  Later I talked to my friend and she had explained it to her  adult daughter who couldn't get it, but then she explained that they think differently than we do.  A CRAFT SHOW would be a show about crafts. She figured out that she probably should have said a CRAFT Sale, and I said that she would probably even do better with  " adding an explanation of a place where they sell crafts and things that people make". 

Recently my older daughter S... with Fetal Alcohol was told that she needed to take her meds for 30 days with only missing 3 doses a week and she wouldn't need a guardian.  She made the 30 days and then thought she didn't need to take them anymore.  She understood what they told her but they forgot to add the information that she needed to continue to take her medications and she had to continue to show she could do it in order to have an intervention.  In her way of thinking she did exactly what they told her. Then they went back on their word.

When one of mine was in the teens. I said  she had a stomach bug. She thought there were actually bugs in her stomach and she freaked out. Explaining that only caused further anxiety. I finally just said her stomach was sick and she finally stopped panicking.

When working with kids with FASD's, autism, and other neurocognitive disorders it is very common for some of them to be very CONCRETE in their interpretations of what we say.  Talking simply and thinking about what we say can save confusion and mixed messages.

***I will add that kids who will often present with  delays in processing information auditorilly. Even though they may be able to comprehend the auditory information given, it may take them additional time to process this information prior to responding. They may also have difficulty following multi-step auditory directions.

I often tell Becca or Dee as part of something I said that I was just joking or being facetious, or sarcastic to make sure they connect what I was saying.  They understand that I was not being serious. Eventually they learned many of the double meanings or when we were joking and laughed even when they did not understand. Implied meanings really make them struggle because they are hard to explain because the rules and circumstances are more fluid and not consistant. My kids with FASD got the teasing much better than Becca with her autism and Noonan Syndrome.

So when I see my kids stare at me with those confused eyes, I wait to see if they get the little light bulb look at they just processed the information or they still are confused. I then rethink what I just said and explain it more simply and then I see that they finally figured out what I was meaning.

Strategies:

• Auditory information/prompting should be kept to a minimum.  It is often too overwhelming for some children/adults. Visual cues should be used to assist the child to more readily comprehend directions, questions, rules, figurative language, etc. 
• Give the child enough time to respond, in order to allow for possible auditory processing difficulties.  Wait before repeating/rephrasing the question/directive.  Double check for understanding from the child's perspective.
• The adults in the child's environment should be aware of the child's concrete/literal interpretation of figurative language. We should help by providing concrete explanations.  We need to increase the child's comprehension of figurative language skills, such as idioms, multi-meaning words, jokes, teasing, etc., through the use of simplied explanations. 
  
  
 

Figurative vs. Literal Language

When working with children/adults with FASD, autism and other processing issues. Speak slower giving them time to process, simply and concretely.  Watch for looks of confusion and misunderstanding and check for understanding with asking a question. Then explain again using more literal/concrete terms.

Use visual supports which helps them have the ability to independently complete tasks/activities and as always we need to show more and talk less with our kids/adults with auditory processing disorders.

One thing I have found highly effective with working with my teens and adults with auditory processing difficulties is to use their always present cell phone as a tool to help them be more independent. I talk less, I text more and thus they are highly successful and Mom is not nagging from prompting, prompting or explaning. They see it, they can do it, they can reference it if they forget and they can ask questions that simplify my responses.  It also cuts the processing time way down and it is done much faster.

 

 

I found this book, inspired by a boy with autism,  "Unintentional Humor is a laugh-out-loud book that highlights the ambiguity of the English language when experienced by a literal mind. Literal interpretations of common expressions such as Surfing the web, You're in the dog house."

"The twenty-three pages of definitions make Unintentional Humor an effective teaching tool for both home and school. Unintentional Humor is being developed into school curriculum, learning materials, and a series of additional books."

Broken Adoptions: Another Story in the Headlines

Another story of a desperate family with an adopted child who gave up. I do not condone the method of how they gave up their son, but I understand their desperate measures to keep their family safe.

In October when the Reuters story broke about the rehoming of children hit the headlines, I wrote a piece on

Adoption: Where  The Systems Have Failed Both Children and Families

The Ohio story is spreading like wildfire across the internet. How come the real story is not ever heard?   When will it end... if we don't start addressing the problems with the lack of help, diagnosis, post adoption support, families will keep making the headlines by giving up, or in some severe cases find themselves in unthinkable circumstances.  Families are not equipped to be residential treatment centers without any guidance or support or understanding.

Here is my attempt at educating the media. As a long time adoptive parent and advocate of some very challenging children I have seen adoptive and biological families struggling to find services in a broken system. There is much written about the failure of the children's mental health system and the lack of qualified board certified child psychiatrists, plus the lack of parity with insurance companies, lack of evidence based practice and the lack of research into the effects of psychotropic medications and the off label use on our children.

Many of these children also have been prenatally exposed to alcohol and drugs in utero and the kids from the foster care system also have challenges and brain structure changes from the effects of abuse and neglect. Normal parenting strategies for these children do not work and the advice given by the children's mental health system often is opposite from what actually works with children with prenatal alcohol exposures.

A recent study written in Canada says 55% off the children in foster care have Fetal Alcohol Spectrum disorders.

The lack of research, diagnosis, and awareness and evidence based practice is really hard to find. And there is little post adoption support, foster parents move these children from place to place and some of these children due to their histories have a hard time fitting in home leaving families desperate, grieving and broken from trying everything and faulted for not loving them enough.

Post adoptive support services need to be funded to help families when they find themselves with a child who needs help. Love alone will not heal the children when they are genetically challenged by their parents genetics which are often loaded with mental health issues, prenatal alcohol and drug exposures, for children from institutional settings and the foster care system abuse, neglect and trauma.

From the Bazelon Center for Mental Health Law  Child Welfare


There is much written about the failures of the well kept secret of broken systems of care and the Custody Relinquishment to garner Mental Health Systems not just from biological families, adoptive parents, kinship parents have all faced the awful decision that after exhausting options to gain a very expensive out of home placement. All children belong in homes and parents sometimes are sleeping under threat of harm, fear not only for their child, themselves, the siblings and everyone suffers from secondary trauma.
More on the issue of Custody Relinquishment


Policy Documents on finding alternatives to Custody Relinquishment

We need help and I have been helping parents find services for now 15 years after I adopted a set of 5 from foster care. I had little help, I had to fight, I had to learn the ins and outs of Medicaid law and fought for the right for my adopted daughter who while on medications which were making her worse nearly killed me. The black box warnings were too late. But she was not mentally ill only, she had Fetal Alcohol syndrome and I had to fight for two years for her right to family and a residential placement as a young teen. Today she is an adult, she knows that this mom never gave up.

We have not come very far since 2003 when the United States General Office of Accounting wrote a report on this tragic practice.

Nami's information on that report: 

But few families can fight a broken system. Until we look at the underlying problems and find help these stories will continue to happen and families crucified by society and the media for the lack of support and understanding of some very complex issues and the underlying cause of most of these stories. Fetal Alcohol Spectrum Disorders compounded by no support for families and often times inadequate histories when parents adopt. Kinship parents, foster parents, biological parents also struggle with our FASD, mentally ill and all become traumatized and every one loses.

Why do I know so much:  I had no choice but learn it all to fight for my adoptive daughter's right to family and not be relinquished to the vary system she came from.

I wrote our adoption and fight story in the second half of our families story.
Tiny Titan, Journey of Hope by Ann Yurcek

I have spent the last 10 years helping families keep custody and find support and diagnosis for their complex adoptive children. 

Adoption--Where The Systems Have Failed Both Children and Families

Adoption in the media again. Adoption Horror Stories and the Rehoming Stories. 
The Child Exchange.. America's Underground Market for Adopted Children

This time with a big way... Rehoming. Adoptive parents who became so desperate that they resorted to moving their children to another home without going through proper channels.


First I will not condone any of the actions of the parents who put their adoptive children in jeopardy, but I can understand just how desperate they could be.

This blog post is going to be complex, but it is a complex problem that causes parents to give up on their children. I hope this helps to put another spin on it but with research to support my arguments.
Not media hype.

I saw glimpses of this as it was happening over the years and stayed away from any of the discussions and discussion boards on the subject.  A couple of times on other groups the subject came up and I talked about finding the help through the proper channels. Starting with the Mental Health, Adoption Support, their insurance and Medicaid and tried to help some parents find scarce help.


Back in 2000 I wrote a letter in the middle of the night. My thoughts about having to tell my daughter that she was going to have to go back to vary system she came from to find the mental health services she so desperately needed.  I searched and searched and found no hope or help for her.  I tried every door and found that the system was not set up to help parents who found themselves in our situation.

I found the little known secret of failed adoptions.
Adoption Disruption and Dissolution from the Child Welfare Gateway 
Some of those circumstances from lack of knowledge about what it takes and think love is enough. Sometimes it is because of often not disclosed information. Most often it is the lack of proper supports. For those who find themselves with children with severe complex needs, it is a lonely world.

I know that in our own circumstances, we were not allowed to see any of the records and they did not disclose that our children were not general level of care kids. We were promised that none of the group of kids had any needs that would put other children in jeopardy as we had our own children and a medically fragile child to think about.  But we found ourselves with four of them who were in therapeutic foster care and the three seventeen page psychologicals on the kids were never shown us that they were much more needy than we were told. Never-the-less we did not give up even if had been fraud. We had made a promise.

Even more on the tragedy of custody relinquishment to garner Mental Health Services.
Custody Relinquishment from the Bazelon Center for Mental Health Law
Even biological families were forced to put their mentally ill children into the care systems to garner services. But Adoptive Families had to do it to. To return them to the systems to get services suitable to condition and often times residential treatment if one could find one.

Those reports highlighted what I had learned. That systems are not equipped to handle our most complex children and families find themselves struggling to find competent help  that is hard to come by.  One has to exhaust all services and then there are few options. Hospitalizations and residential treatment are hard to come by and often will not except our seriously disturbed children.

I fought hard and did not give up custody and learned to fight for my daughter and her right to family. But most families will not be as lucky as I was. 

Families who have adopted from the foster care system and the worlds child caring institutions. We have no safety net when we find ourselves with children too severe to attach or too damaged to remain in the home safely.  We are vilified for not loving them enough, not caring enough, for throwing away a child. The more of these stories, the harder it is for parents to reach out for help as we are judged, juried, convicted for not loving our children enough or doing enough to help them heal from the ghosts of their pasts.  But it is much more complex than that. 

We need a support system all the way from better training  and support from the adoption agencies, health and mental health care systems, child welfare, schools and communities supports.


We adoptive parents who take on these children, sometimes unknowingly are Parenting Complex Children.  Complex...

Some once told me that they are Genetically loaded (they inherit the parents genetic predisposition). There is actually a study going on to see if prenatal alcohol exposure changes genetic structures.

Many will be prenatally exposed. A parents substance abuse issues often put these children into the care of the states and countries. A new study confirms what we parents have known for awhile.
Fetal Alcohol Common in Adopted and Foster Kids   
Neurobehavioral disorder associated with prenatal alcohol exposure. They look normal but can't do normal and normal parenting strategies do not work.

Children who face poverty, neglect and abuse can have neurocognitive issues. Their brains changed by their earlier experiences.
Neurocognitive Impacts for Children of Poverty and Neglect from the American Psychological Association.

Most will have at least some mental health issues of some sort from their trauma they have face. The majority are milder or moderate, but some can be severe. For older child adoptions we need to expect Post traumatic stress disorders. Trust issues, and Attachment Disturbances. Why wouldn't they?
They are removed from the only people they knew, put in institutional settings, or disrupted placements.
Often kids act out their stress and those behaviors can cause multiple placements. The child also learns that nothing is permanent and if you are bad enough, you move on and you don't need to attach and trust.

Parents have answered the call to give children homes, not just from the worlds institutions but from the foster care system in our own country. Many parents go through the trainings and say what they can and can't deal with. But often times the problems will not appear until later when the child can't hit their developmental milestones that it will become apparent or puberty hits.  I remembered reading early on a statistics of adoption disruptions and dissolutions.
Adoption Statistics: Disruption and Dissolution from Adoption.com.

This not a new problem and these are not new numbers. This article written long before the push to move children from foster care into adoptive homes.

We when adopt the children, we make promises to care for them and help them to the best of our abilities. But for some parents, they find themselves with a child that nothing seems to help. Sometimes the more you love them, the more you try to care for them, or parent them. The worse it becomes.  Adoptive parents reach for therapists, books, strategies and anything they can grasp for and often times the worse the situation gets.  I remember the conflicting advice I got from the five different treating professionals in the differing spheres of my sibling set of 5. The advice from one conflicted with the advice of another, and learned to trust my own intuition and fire the ones that were worsening my children's conditions.  The Reactive Attachment Therapies do not work well for kids prenatally exposed with alcohol. They actually worsen them. Then the schools with their behavior modifications that do not work with FASD and then the triangulation of the child pitting unattached people against the caregivers. It is a set up for Adoptive Parent Burn Out and a child in danger of blowing out of a home.

Parents are finding themselves having to run residential treatment facilities without any training or support. I have seen adoptive parents/kinship caregivers have to manage kids that have been released from psychiatric hospitals because they could not be managed there. Thrown out of schools for misbehavior's and left to function solo. All the while trying to be on guard 24/7 to protect the child, the other children and even themselves from catastrophe.

The failures of the mental health system in our country for children are written.
America's Failing Mental Health System, America's Struggle to Find Quality Care

But for the complex children from the care system, they are stuck in a place where the care systems and mental health clash. They are always the others responsibility.  For those who bring in kids from other countries they are in a No Man's Land and often on their own.

I have added to this piece a chart.  My favorite with sharing just how complex these children can be. Overlapping Characteristics.  I once asked a person in power in the state mental health system. Where is the evidence based practice for my children?  He didn't answer, except with the statement you are?

What I learned is that I had to trust my intuition, leave no stone unturned, I had to fight for my daughter, but also know that I had to keep everyone safe. 

                                          Overlapping Characteristics Download PDF


But the systems of help in our country are failure based. Not preventative. The medical system can diagnose the prenatal exposures, but can help us understand the cause. The Children's Mental Health system is not the right place for those prenatally exposed to alcohol but often can help those with the complexities of abuse and neglect issues.  But as children mirror the behaviors of others others, these children learn from their peers and those behaviors often worsen in the home. But the lack of competent support for those from the care systems is a challenge.  For my kids the Mental Health system and the groups for those kids actually worsened my kids disorders.  Knock on the door of Adoption Support and often they tell you you have to use your insurance and Medicaid first.  But that is another series of Medicaid stories about that failures for the most vulnerable of children.

But our kids have no coordinated Silo to find support. Many of the children from the care systems are often of normal intelligence, so developmental disabilities services will not help us. Mental Health services are a poor fit and the strategies do not work with children with prenatal brain injuries. Those lucky enough to present as having autistic tendencies may find services under the Autism Umbrella. 

I was told to look for help in places that were not equipped to handle our needs. I was not an abusive parent, I was not a neglectful parent. I had a daughter too dangerous and damaged to live at home. I was ordered by the Community Mental Health System that I had 60 days to relinquish our daughter and to dissolve the adoption or be charged with abandonment. That document came up missing and I had thought to stow a copy hidden where no one would look for it.  Someone told me that when you go public documents burn. 

I had been warned that if we abandoned my daughter in the state hospital, we would face charges and the loss of our other children, not just the adopted sibling set, but our own biological children.  The care system trumps parents say, bring this child home or possibly lose your other children, your professional licenses, and be put on the abuse and neglect registry. It is Least Restrictive Setting that is used to say that ALL children belong in the homes and then it is our fault that we are ill equipped to meet their needs.  Even when someone gets hurt, we need to go against the recommendations from the professionals that we need to have them home to attach.

If you have to place your child into foster care system, the adoptive parents often lose their adoption subsidies if they are lucky enough to have one if you adopted from the US or if you adopted internationally you will be charged with the cost of the child's care.  I have even seen where an adoptive parent was charged and they took not only the child's adoption subsidy but the adopted siblings subsidy as well and handed the adoptive parent the bill from the state and put liens on the parents home. The same state that adopted the child to the couple and the agency hid the records.  Adoptive parents are often charged with paying for the court fees to get help from the justice system when the Child Welfare and Mental Health Services fail. Too many adoptive parents face calling the police as the option of last resort. Followed by the knock on the door from the Child Protective Service Workers.

No wonder why parents take into desperate measures to find support, the wrong way. Because has anyone tried to Navigate the MAZE to find help for those most vulnerable of children who are the small percentages of kids whose needs are great. Some of us who find ourselves with a child with intense needs, we will get secondary trauma not just for the parent, but the siblings as well.
PTSD in Parents of Children with RAD

We are held accountable for the failures of the Child Welfare, Adoption and Child Mental Health Systems, Medicaid, Insurance and Schools to have a Continuum of Care and a Safety Net.  and it is time for all of us to stand up for finding Post adoption support services and a continuum of care for the  the adoptive children and families so they can honor the promises. For those of us who have adopted from the United States Foster Care System we need not just a check, we need real help and not be judged and serviced by the child protective services the same care system that our kids came from.

We need a post adoption program and laws that will protect our families from the catastrophic costs of having a child with severe issues.

We need the media to focus not just about the adoption horror stories, but real stories of real families fighting the odds to try to help very complex fragile children.  We need evidence based adoption conscious services and supports in all the service sectors and those parents will not resort to give up on their adoptive children.  And for those children who do not fit into the adoptive home, we need laws that no do penalize the family for trying to find healing for the child and for everyone involved.  It should not be seen as failure, but just another place to meet the needs of the child. 

We did not give up on my daughter, or her siblings, but we did pay a price. Many an adoptive parent said that they were more traumatized not by trying to help their child.  The trauma of the lack of support and navigating the systems if often times are much more damaging than our circumstances.

Postscript: My daughter is now 28 and she still has a family to advocate on her behalf and call home to and we have gone on to adopt another little guy with Fetal Alcohol Syndrome plus a host of other problems and he is thriving. We have full disclosure, we will do whatever and find whatever it takes to give him the love and supports to thrive. But we also know that we cannot heal his prenatal brain damage but love him and nuture him through his challenges.



A followup to our story written for the North American Council for Adoptable Children in 2003

The Face of Fetal Alcohol Syndrome. The Innocent Victim.

This is McKellan. He has Fetal Alcohol Syndrome. He is an Innocent Victim of Prenatal Alcohol Exposure.

Today is National Fetal Alcohol Syndrome Awareness Day. In many places around the country bells will ring at 9:09 am. This day was chosen for the 9th month, the 9th day, and the hour of the bells 9:09 to represent the length of pregnancy. Please do not drink when your pregnant.. You will save your child a LIFETIME of struggling and hardship!

Mackie's Ringing The Bells for FASD Awareness 9-9-13

McKellan has Fetal Alcohol Syndrome.

He was one of in 40,000 who was born with Fetal Alcohol
Syndrome in the United States each year.

The estimated lifetime cost for someone born the FAS will exceed
$2 million dollars.

Mackie is an Innocent Victim of Prenatal Alcohol Exposure.

Zero For Nine Months

For More About FASD Read: The Innocents, FASD, Victims