Saturday, March 23, 2013

FASD -- Words of Wisdom

FASD Words of Wisdom

My kids with FASD have taught me.....


Because of my children's prenatal exposure they have brain damage.  Some of them have profound memory or executive function issues that prevent them from planning ahead or even remembering the schedule or what is next.  They do not plan ahead well, if at all. Thus the need for an "EXTERNAL BRAIN".  Which means we prompt them to success.

Dee will not remember to look at the planner, her phone, any strategy I come up with is only successful if I prompt her to use the prompt

 It is exhausting. So it is sometimes much easier just to prompt her.  I don't know how many times a therapist or some well-meaning professional has suggested to use charts, planners, lists etc. for me to try to help her with her activities of daily living. I have tried and tried and tried. It never sticks long.  I just find that I get exhausted, frustrated and its even more work for me.  It becomes overwhelming for her to see too much on a piece of paper or a chart. Then I risk REVOLT from too much information. She needs one thing at a time.

The only success I have had with charts is that I have to prompt them to REMEMBER to REMEMBER and police every step which leads to frustration. The planners, charts, have too much information for her and it overwhelms her and she shuts down and nothing is accomplished.

I find that I am the only one who learns anything from using them. That they can't do it without me reminding them first.


Our adopted daughter S is now 28. We adopted her at the age of 12, she was the one of the 5 adopted sibs who adjusted the best early on. School and mental health mismanagement blew her out of our home. Medications that they put her on destabilized her and put her into a manic state.  I argued with the psychiatrist that things were not right.  School had little to work with. The workers had never sent her school records and we had never seen anything in writing. We did not know that her cognitive disabilities only had her a second grade level and they were trying to mainstream her in school. Our family therapist and I tried to get her an aide, but to no avail. Her verbal skills were too misleading. They said she as severely emotionally disturbed, I knew that my daughter was sad, she was a caring young lady who would help anybody.  But the medications caused behavior on blew her out of our home. She became a danger to herself and others. She spent her teen years stuck in the State hospital and then onto residential.

I fought her for right to family and services when they wrote in her plan that I was to return her to Minnesota and disrupt her adoption as she was too expensive.  I won. They told us that she was a mental health client, I reminded them of her developmental delay.  I got a second opinion and once again Mom was right. She was both DD and a Mental Health client.  She got help in residential and she made gains.

When she turned l8, we brought her back to our town and supportive services. Transition services and her plan said that she would need a guardian due to her prenatal alcohol exposure and retardation.  But as I met with probate court, I was told that in our county, no one needs a guardian and it will cost me thousands of dollars fighting the Community Advocates and Mental Health that we did not have.  I called every lawyer, I called the advocates at Mental Health. They sent me to workshops and literature on Alternatives to Guardianship and Self Determination.

The first Least Restrictive Settings, Shay was the lowest functioning teen. She was extremely vulnerable to their suggestions and she needless to say was victimized, educated in things that were not helping her.
Eventually we managed to get her into a supported apartment with staff and she did well.  But she needed staff to remind her to do certain things, to be her "external brain" in Fetal Alcohol terminology.

At eleven, Shay first was diagnosed with high blood pressure. By age fourteen she was on blood pressure medications. By fifteen a second one was added. As she was going into residential the psychiatrist had ordered an MRI for brain differences, and they found a pituitary tumor.  She ordered Shay to the endocrinologist and when she moved to the hospital they didn't think it was necessary. They ignored my advocacy the endocrinologist and the neurologist and I filed a complaint. They finally got her to the neurologist who diagnosed Shay with Retardation from Prenatal Alcohol and Drug exposure and the effects of abuse and neglect. Shay's full scale IQ was in the low 60's range. 

But they didn't feel that she needed to see an endocrinologist. She was just a severely emotionally ill former foster child. I was an overacting, a Mom who was looking for medical problems that were not there. I had Becca with her Noonan Syndrome who was medically fragile and I was looking for stuff that was non-existent.  The worker at our local mental health agency did not like me and they fought anything I wanted.  So Shay never was followed up on.  Shay's siblings were all thin, Shay had a coursening appearance that began at the age of 12, Dr. Bui had seen it and so had I.  It was a clue, the pituitary tumor was a clue.  She needed to be seen by the endo, but I no one would ever agree.

After we brought her back to town, I knew that they had just recently found that she was excreting too much protein in urine so I got her to the Nephrologist. They did testing and warned me and Shay that she needed to keep her blood pressure in line, take her medications and if we did everything right she should be able to keep her kidney's working into her late thirties.  I got every two year followups on the pituitary tumor, but no one would ever listen to our concern that it may be causing issues.

S. did well with the support in her apartment with staff. The person centered plan made sure we addressed what she needed. Help with grocery shopping, managing medications, taking her to doctors appointments and the paperwork.  She could lose too many state ids, food stamp cards and she had a hard time understanding the complexity of what people would tell her. She needed help with understanding complex conversations and we needed to reframe them and  help her understand.

But in time, they cut her services back because she was doing well. They pulled the supports away and she struggled, sometimes doing well, other times not. The new agency managing her care, seemed to forget that she had FAS and expected her to do things she couldn't. They would fault her for not trying hard enough. They expected her to manage her health care and the special diets she came out of residential care with, never were followed by anybody. I tried to get them to understand the importance, but it went on deaf ears.

I was told by our family therapist, that I needed to let go of the oldest kids, I needed to worry about the ones still at home and trust Mental Health to manage their needs.  When Jim found that we needed to move for a job, I had no choice but leave the oldest kids in the hands of Community Mental Health. I struggled with that they had not done the best job of understanding FASD and we always using services for Mentally Ill Adults and my kids just didn't fit there well.  But in our new state the waiting lists were years long. I could not move them. I had to leave them behind and try to help when the calls would come in.

Within a year of moving, I filed a complaint for S. that they were neglecting her medical needs. The medical neglect charge was changed to "Failing to appropriate treatment planning". How can S. plan for her needs when she has little awareness of what her medical needs entail or even what she should ask for?  The Hallmark of Fetal Alcohol Syndrome is that they need an  external brain and people to help them know what to do.

The next years I would answer the phone, try to remind her support her, and when things needed addressing I would email the Director of Mental Health and they would try to help. But early one the people under him did not understand. She was supposed to do it herself, ask for herself, and when she didn't follow through they faulted her.  Her medical state was slowly deteriorating by May of 2010 and I wrote a letter to the Director telling him that her right to Self Determination and no guardianship was a path to self destruction. No food stamps, no roof over her head, being victimized by people who took advantage of her generosity.
She has an amazing heart. She is so helpful. She will give anything to anybody and she will want to please anyone and just wants to have friends.

February 2012 she was in the hospital and they found she was in 3rd degree kidney failure. She forgets to take meds. The director of MH had just set up a peer to peer support program and they at least were having someone help S. with her medical appointments.  A couple of months later I received my first call in years to participate in her treatment planning meeting. I told them of families concern for her health and that she needed to be followed up with the Nephrologist, the MRI, and an Endrocrinologist.  We also told them that she needed more help than they were giving her. She needed help with medication managment and keeping a place and help with keeping it clean and prompting for laundry.

Within a couple of months, she moved into a new 24 hour staffed assisted living apartment complex of adults with special needs. She finally had a safe, supported place to live. The first time in over 6 years.

My emails to the Director warned him that she needed to be monitored closely as her gout, her blood pressure and other things were concerning. Third degree kidney failure was nothing to mess with. She needed to be seen.

Finally at long last they got her to the Nephrologist after the first of the year. The labs were done, the kidney ultrasound was done and she called that they told her that her "kidney's were normal, just one a little smaller than the other".  I tried to get her to tell me if the paper if it was just the ultrasound or both. But she told me that everything was fine.  A couple of weeks later she called me to tell me that they lied to her, and that her labs were 120, or 20  and at 115 or 15 they start dialysis.  Five points to dialysis she understood. They told her that she needs to make sure she comes back to her apartment from friends houses to make sure she gets her meds. She told them that she would try most of the time, but can't every day.

When she goes out, she will not always remember to come home. The thought would not cross her mind.
They tell her she needs to be more responsible. I tell her to tell them to send a phone reminder to come back home.  But she will forget, but also she does not like to be alone. She wants to be with friends and she is bored when home alone.

I received a phone call from her on Tuesday of the week. The phone call I have dreaded for a long time...
They had taken her to the Nephrologist for a followup late last week, and on Tuesday morning the peer support person had taken her to get her labs drawn. She had gone off to visit friends and the worker had tried to reach her after the doctor had called to say to her admitted to the hospital as her labs were not good.
They found S. who hadn't answered her phone and she dropped her off at the hospital.

I took over, S. has our phone number programmed in her phone and she called to tell me what was going on. Tears were falling and she was there alone.......  I talked to her, I prompted her to have the doctor call me. Within an hour, the resident was on S. phone. I quizzed the resident if they had this, or this in her chart and then with both of us realizing that much was missing I was able at long last after many hospitalizations to give them a  full medical history.

They set up permission for us to give and receive medical information with S. consent. I was able to call and support her through the cell phone.  We got her labs, and the entry labs were within one point of the cutoff for stage 5 kidney failure and it was too close to dialysis. Her kidneys are not filtering. Her potassium was putting her at risk of heart problems. They focused on getting it down and within two days her potassium was down and her kidney GFR went up a point. They told her that her levels were stable and that she was going to be released. I double checked to make sure that the discharge summary would go to her case manager and I know what needs to happen so I can double check.  But S. thinks because they said it is stable now, that she is all better. I had to explain that her numbers are less than three weeks ago and she has to take her medications.  But it is too late.

She is in trouble, her kidneys are failing.  Will she finally get the appropriate help now that she has proven that she can't take care of her medical needs?  Can I trust them to manage her appropriately?  I don't think so.

Ten years sped up by medical neglect..... I should have never trusted them to manage her, but I had no choice. She had needed a guardian, too look out for her, to help make decisions. She needed someone to help manage her complex medical issues, her asthma, her high blood pressure, her sleep apnea which they only finally addressed this year after many years of me complaining. She forgets to carry her inhaler but she is a severe asthmatic.  Early on they told me that she was making the "choice" to not carry it, to not take care of herself, not call for appointments, not follow up on appointments.

How could she? It's not that she won't, SHE CAN'T without assistance.

My daughter is going to pay a HUGE price for their lack of appropriate supports and services. HER HEALTH and it will not be long where they will have no choice but to deal with it, as her KIDNEYS ARE FAILING  FAST.

I had struggled with the anger, the sadness this week. The tears for my daughter, who is a vulnerable adult and their neglect of her medical care. The early ignoring of my pleading for them to help her. Finally they did, but why if in February 2012 she is in 3rd degree kidney failure, did they not get her to the nephrologist until a year later?  Why so long?  Why didn't they listen?  I had to let it go, I can't be angry, I am JUST sad.
Sad, traumatized once again by a system that was supposed to help me who fought me when I tried to help her get help. I fight to not close my eyes to revisit tapes of the past failures.  I try to not be negative. I can't change anything, but what I can do is write.......

Why does it have to be so hard?  When are we finally going to find supports for people with FASD's  like my daughter so they can be supported, safe, and valued?

I will be filing a complaint, but of course no one ever does anything wrong. They turn the blame on S. and that she should have this, should have that....  But maybe the best thing I can do is ask now that she has proven that she cannot take care of her medical needs, is to prepare for the upcoming crisis just around the corner.

Small Super Hero-- Starting Over Again

Some people may think we are crazy. We managed to raise our biological 6 which includes a very medically complex Becca and our 5 adopted sibling set who all were affected by various levels of Fetal Alcohol Spectrum Disorders and the effects of complex trauma from abuse and neglect. 

But we started all over again l8 months ago, with the addition of a Little Guy with Full Fetal Alcohol Syndrome and an underlying unknown genetic disorder. His parents rights now have been terminated.

I have not been able to post as he has been in foster care with us. We filed his adoption paperwork with the courts here and our GOTTCHA Day for Little Guy is set for April 16.

I will be writing about our next Tiny Titan, who has stolen our hearts and is blowing people away with his progress.

More to come......