Wishes Come True-- A Build A Bear Autism Miracle

Becca was so excited when Build A Bear announced that on March 27, 2013 they were going to have special Limited Edition Autism Bears benefiting Autism Speaks. Becca has for the most part outgrown her need for bears and animals to make her pokes and procedures better. She has moved on to electronic rewards. But Build-A-Bear is the stylish boutique for Miss Morgan her 4.5 pound Morkie Service Dog to shop. The store in Madison knows her well over the 6 years of frequenting the store way too often after too many doctors appointments, too many procedures and too much anxiety. It is my distraction tool. With now having Little Guy, Becca is on a new tradition, trying to get him to like the Bears and animals that have comforted her over the years. When Dr. Sheirlie had a new baby, Becca knew right what to buy... a Build A Bear and outfitted the baby's bear in a lab coat, scrubs and included a prized doctor kit for the bear.

I had to put in my preorder the day they were released to ensure getting one... no two would only do. One for each her and Little Guy as she reminds me they both have Autism, and Autistic kids/people do not like sharing.  Nice try Becca, but you can share, but you and Little Guy can both have your own.

I had planned on picking up the bear on the 27th of March, but my bout of stomach flu kept us home from Madison that day. The Easter weekend we were occupied with Nathan, Stacey and Brody with Ian home, a trip for a bear was not on the agenda. I finally took my preorder paper to the Mall Build A Bear store and only to find out they held them through Easter weekend.  They were sold out. Holding my temper, I made a statement, "that I was going to have a very disregulated and crushed Becca to deal with when I get to the car". I am so glad that I had left her to babysit a sleeping Little Guy in the parking lot while I ran in to retrieve the special Autism friends. The normal store friends were not there and I was out of luck.  Surprizingly mature, she did not melt down, get sad, just told me "It is OK, you tried!"  Who replaced Miss Becca with this reasonable young lady? I remarked.

Two hours a special text message arrived on my Iphone. How did they look up my cell phone number?  I usually use my home phone number on my orders? They had asked my name when they went to ask a question about the bears and they must have looked up our Build-A-Bear rewards info is the only thing I can think of. But how did they get my cell phone number?

The young man talked to his supervisor and they then  realized who the bears were for and that they called their Wisconsin Dells store and found two for Becca and her brother.

They were getting them ordered in and would ship them to me for FREE if I wanted them or I could pick them up at the store.

WANT THEM, I need them. 

Calling the store, I thanked them for going out of their way to make a very special young lady with Autism really happy and that she and her brother both have Autism Diagnoses and they according to her needed their own bears.

Customer service, going out of the way to care about Becca.  Build A Bear created a miracle and gave me faith in caring humans who were bear angels to fulfill a wish for a very grateful Miss Becca.

I am not so sure, Little Guy shares in Becca's love and obsession of stuffed animals, or if he just doesn't like to look at the camera. But anyway, we have  two Autism Build A Bears in honor of my Becca and Little Guy who came by way of a miracle....  from some very special angels at the Madison, Wisconsin Build a Bear store.

Since finding the special bears, they have put up a few on the Build-A-Bear website and I ordered the t-shirts and two more bears. One as Becca says is for Matthew, Dr. Sheirlie's son with autism and one for the Noonan Syndrome conference as some of the kids with NS fall onto the spectrum like Becca.

A Dog's Love and Another Day

A dog's love for her master is so powerful... overcoming so many obstacles to love her Dee and for Dee lessons in love that have healed her trauma.

Miss Dee had a hard day yesterday when she woke up she realized her old rescued yellow lab/golden retreiver had a stroke during the night. Holly could get up on her front feet but her back legs were definitely affected, but she would walk, but so wide and wobbly. After big tears and lots of questions (thank God that Doctor Dad was home when it was discovered) we decided to "just" see how she was doing before heading to the vets.

As the day wore on, she gait is steadily improving and today she is walking pretty well considering. She just can't do stairs. Dee carries her best friend.  She is drinking and eating and the tail is always wagging when Dee is in sight.  
 
We have talked to her that as long as Holly is comfortable can get around we will just help her, but when it is she is suffering, we will have to make decisions. But we almost lost her last year from infection and she recovered not wanting to leave her Dee.

So for now another day and love for Holly and her master!

The Innocents... FASD.... Victims

I was talking with a friend today about a conversation with Miss Dee who was talking about her FASD.

"Why did she and Little Guy not have the right to be born with healthy brains?"   How can I answer that question?

We  were venting about the unfairness of FASD.  Those who have FASD are innocent victims. Innocent Victims of being exposed to alcohol prenatally and further victimized by the lack of appropriate services. There is no place for people on the spectrum to fit. Mental Health services, Developmental Disabilities, Autism, are the silos where they can garner support for their prenatally acquired brain injuries. But for many who are on the spectrum they "just" don't fit. FASD is not even in the DSM as a disorder. So many service silos require a fail first mentality, you have to fall so far to get any help. We need preventative early intervention services from birth on and life long support for those affected.

For the fortunate few, they can fit someplace. They fit on the DD if their IQ's are low enough, or on the Autism Spectrum if they have enough social inadequacies or sensory issues, or on the Mental Health Spectrum when they have floundered and failed enough to fall into secondary mental health issues. People who have a Traumatic Brain Injury have a silo to garner services, but not FASD.

But also, why can't we get help for those with FASD's. It is a shame based disorder. Most will not get diagnosed to the root cause. It is OK to have ADHD, ADD, Autism Spectrum Disorders, LD ( learning disability), or other mental health problems in our society. But to get diagnosed, there has to be confirmation of drinking alcohol during the pregnancy which then becomes someones fault. In our legalistic society, we blame the parents, we blame something for outcomes.  What parent is brave enough to admit they caused their child's brain injury? There are a few courageous Parents who love their child enough to do it. But most who are diagnosed are not the families of origin.

Kids from the foster care system or adopted from one of the countries known for their alcohol comsumption are sometimes fortunate enough to get diagnosed at a good diagnostic center. But many will still be missed. For many of the others, it is the other "little" d's that they will be their umbrella.  ADHD, ADD,  ODD (Oppositional Defiance Disorder), AD, SID, ASD, BD, DD, OCD, LD. So many little d's that they will find a label, but never the underlying cause.

But finding the root cause does not help our kids/adults,if we can be fortunate enough to find a diagnosis. They still will have to be served under one of the umbrella's that often times are a poor fit.  Many will not.

But there is no place for them to find supportive services that really address their unique needs.  They are often too bright to feel comfortable but will not qualify for services under the Developmental Disabilities Category. They are not Mentally Ill enough to qualify for MH services until they really fall apart. Sometimes when their predisposition for Substance Abuse Issues gets them addicted enough, they may qualify for their services, but they can't manage to learn and keep the sobriety they teach.

Many a parent calls who have that young person who barely passed high school, who cannot hold a job, they may or may not have gotten special education services and they were adopted or live with a kinship caregiver and know that their young person has been prenatally exposed and they are floundering on where to go next. They do not have enough documentation or they have been held together by the families support and they know that their loved one cannot make it on their own. They want to know what to do, where to go for help? 

I have heard some professionals who actually think these kids can outgrow their Fetal Alcohol Spectrum Disorders???   There were those who told me that it was TOO LATE to help my children and just write them off.

We need HOPE, we need HELP, and we need to recognize FASD.

They were innocent victims of prenatal alcohol exposure and they will pay a lifelong price for their mother's drinking. 

Money and FASD

One of the hallmarks of FASD is their inability to understand money. It takes planning skills, it takes abilities to think on many different planes and of course impulse control with is another struggle for those who are affected by prenatal alcohol exposure. Too many steps, too much abstract thinking and of course too much planning ahead for someone struggling with executive function deficits.

With my adopted sib set, I have had many lessons in what to do, not do, and what to expect with money and their FASD.

First, a REP PAYEE or SPENDING MANGER needs to be in place or they will face way too many problems that can have huge ramifications. Bill collectors, homelessness, hunger and too many phone calls home to Mom and Dad.  My phone rings way too often from bill collectors who were given our numbers trying to find one of my FASD adult children who have no concept of money, no job, no ability to pay back the bill. 

I have learned any money in their hands is there for a moment and it will be GONE in an instant.

Free Downloaded Printed Money to work with

What I have learned....

Money is abstract...  they need to see the money. If the money is automatically drafted into a bank account they cannot see it. They do not understand something that is not tangible. Debit cards, checks, credit cards are a disaster. 

They need to have CONCRETE RULES around money.

The words BUDGET do not fit in FASD jargon. A friend of mine suggested  SPENDING PLAN. What do they do with their money? SPEND it.

BILLS FIRST
FOOD and Personal care items SECOND.
What do they need to save for next? (Clothing savings, phone replacement, whatever they really want).
THEN the allowance,  then slowly dole out the remainder in short increments on the same day of every week to avoid the "I need more money" phone calls.

But how do we help them understand money and how much and where it all goes when they do not understand math, or time, or planning.

I watched the Cosby Show with my younger boys when they were teens and a light bulb went off when Cliff Huxtable was trying to explain how little money he was going to have if Theo did not get a good job because he did not want to attend school.  Cliff used Monopoly Money to give Theo the money he would earn on a mediocre job and where it would all go. Cliff pulled the money for Rent, Theo said he would live in a less attractive apartment and pulled some back, then he pulled the money for the car and Theo said he would ride the motor bike, and asked about clothes, and of course Theo gave up some money as he wanted to dress well. Then Theo pleased with all that was left and Cliff reminded him he still needed to eat. There went another two hundred dollars and Theo took back another hundred and said he would eat bologna and cereal. Then Cliff asked him if he was going to have a girlfriend and after a YES, a smiling Dad took the rest of his money. (The Episode of Cosby  we watched with my boys ).

My boys were shocked by the episode on TV and it sparked a learning moment that I will never be more thankful for. They understood the concept of spending plans.

I have used it to help explain where all their SSI checks would go, I have used play money to represent the real money sitting in the bank. It has made an impact.

My favorite Money Set to help with my kids  
I used this set to teach my kids to count change, make change, and figure out anything to do with money. 

Otherwise go hit up the dollar store for play money to use to show where the money goes.

** Note always use play money as real money may be too tempting for many of the kids with FASD, I learned early on that my counting change jar would turn up missing and no one had done it, even when confronted with the change in his pockets.

Granted any money left, would be spent in a moment of impulsivity.

FASD -- Words of Wisdom

FASD Words of Wisdom


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

THEY DO NOT REMEMBER TO REMEMBER

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
.  
PROMPT 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.

FAILING

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......