Sunday, February 16, 2014

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

7 comments:

  1. I am so sad after reading this as it describes the life my grandson will live for his whole life. Why can people who do not care for children with FASD just not get it. Our children struggle every day. They want to fit in they want the same things all children want but ours cannot have. Life is not fair to these children. May God bless them all.

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  2. Dear Ann, as a parent to an adopted child with FASD, your words gave me courage, hope and inspiration. I thank you for them and pray that the Lord will continue to watch over you and your 'wee stars'. God Bless, Danny, from Scotland

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  3. This is so hard to read. I have two little foster boys (2 and 3) both of whom have FASD. Everyone involved agrees and we have positive meconium testing, facial features, and admission from the birth mother but no one wants to give a diagnosis. And on top of it the child protection agency is looking to dump the boys either by forcing adoption and pushing custody and withdrawing all supports, finances, and services. These notes are my greatest fear and it feels like no one is listening.

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    1. Jenna: If they will not support children with a disability of this nature you should NEVER be pushed into adopting them. That is a mighty sad way for them (CAS) to conduct their mandate.

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    2. This is powerful and very sad. I am so sorry. This is our life but my daughter is doing pretty well right now. Not all kids with FASD struggle as much as this boy did. It's such a spectrum but agencies still are not doing well enough to understand this disorder at all. SO sad and really not okay at all.

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  4. You have printed my daily life with my adopted daughter who has FAS/RAD and other lovely initials you listed. I am so worn out. So tired. I long and cry for support and help. Someone just send help, please. Thanks you for writing. I will share this.

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  5. You touched a nerve - I have been trying so hard to find someone to help me, give me information, tell me how to help my daughter. It seems so unfair that it all falls to me, who doesn't know what to do and has no time to do it. These kids take all our energy and self-control. And they are so beautiful when they are not stressed from trying to fit in and keep up. Thank you.

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