Tuesday, April 17, 2018

Research for Assistive Technology and the IEP

Mackie working on his iPad with the Writing Wizard App

Last night I spent a few hours researching and finding resources on getting Assistive Technology into the IEP for Mackie.  With his complex vision, motor and neurological issues he needs Technology to be able to learn.  He has vision issues, but due to his motor needs Braille will not work.  The technology for those with vision challenges use motor.  The technologies for those with autism and/or motor needs are often visual and his vision impacts using those strategies.  He uses his new Novachat for speech and how can we get that into his IEP and enacted.

I started Mac on using the iPad at 22 months and he comes by technology honestly.  With a Triple Autism diagnosis he is technology savvy and sometimes I wonder how he finds all he finds.  For our older daughter Becca she was already on technology in early l992 at the Pacer Center in Minnesota. I know that technology is key to level the playing field for children who have complex learning and motor challenges.

These are the best of my finds for the night and I had requests to share them for others to have when they are preparing for the IEP and Assistive Technology Needs.

Assistive Technology from Wrightslaw

At a Glance: How The IEP Team Decides on Assistive Technology at Understood.org

Writing Assistive Technology into the IEP

Considering Assistive Technology from the Center for Parents Information and Resources

Documenting the Need for Assistive Technology from the Georgia Project for Assistive Technology

I hope these sites help you as you prepare for thinking out of the box and planning the IEP.  I shared them with the IEP team today so we can work together to write an IEP that will help Mac learn and grow!


Tuesday, January 16, 2018

It's Time to Share Our Expertise: Parent and Caregiver Powered Research

FASD Diagnosis Survey:

I wrote in Tiny Titan, my long procrastinated book. "The Professionals Read the Charts and we Read the Children. When we share our knowledge with one another, we can find answers. "

The professionals have the research and the book learning  and we have had to learn from walking with our children out of necessity and survival.  But since FASD has no dedicated funding stream for interventions and resources to help our kids, we have had to find our own way.

It is time for the Parents and Caregivers to step out and help share our knowledge, our wishes and through surveys unite our voices and use the research to shout to those who will listen.  Not only will we caregivers share our expertise, but partner with the adults with FASD who are the real experts as they live with FASD and have knowledge to share.

Today I launch the first of many surveys.   To the parents and caregivers, please take a couple of minutes and fill out the anonymous survey and help us understand about FASD diagnosis.

FASD Diagnosis

Thank you for helping the FASD cause.


Fetal Alcohol Spectrum Disorders, The Hidden Diagnosis

If the statistics are now much higher than previously thought and the risk has been known for decades; why is it that so few children are actually diagnosed and why do we not have systems in place to help them?

Because we do not want to talk about it and we have focused on prevention and intervention but have created the interventions to help those affected. In the US monies are put into prevention and because those with FASD have no place to find help and hope.  Currently there is no dedicated service silo when FASD is acknowledge to fit under disabilities and schools have no dedicated qualifier for services as well.

We have come a long way in the last twenty years on knowledge and awareness about FASD but we have a long way to go. When we adopted our children, they did not tell us they were prenatally exposed to alcohol, but the alphabet soup of illegal drugs were highlighted. My children along with many other Children with underlying FASD's will find their diagnoses under the ALPHABET SOUP of symptoms they display.  But for my kids and with playing detective, we found their hidden answers, prenatal alcohol exposures FASD. 

Attention Deficit Hyperactivity Disorder, Attention Deficit Disorder, Oppositional Defiance Disorder, Autism Spectrum Disorder, Bipolar Disorder, Learning Disability, Intellectual Disability or Developmental Delay, Sensory Processing Disorder and so many more.

We look at the symptoms and not the underlying challenge.  When we do not have the full picture we treat the symptoms and they tools we use may or may not help the challenges.

FASD is hard to get diagnosed because it requires admission of maternal exposures.  Often children from the care systems, may or may not have that information and it may hamper finding the answers.
Kids from stable families, FASD is the last thing anyone would ever think of as a problem.  But we know that by the time a Mom finds out she is pregnant, the baby may have inadvertently been exposed.  Mixed messages from the media, doctors, society about the effects of alcohol have contributed as well.  Its time to stop the blame and help us help our children and adults find the underlying understanding.

Kids with underlying FASD are hidden in the Alphabet Soup of Neurodevelopmental Disorders and school labels.  They are everywhere, in every social economic class and it is not just the parents with substance abuse that cause this issue.

The voices of fetal alcohol have been fighting for decades to raise awareness about FASDs. Our voices are getting stronger and a few of us are banding together to continue in the work of Teresa Kellerman, Bonnie Buxton, Brian Philcox, Jocie Devries, Delinda McCann, Vicky McKinney, Bruce Richie, Vicki Russell, Susan Rose and so many more who have walked before us.  The work of Nofas and Mofas helping create the awareness and platforms for us to move forward.

We are stepping out to unite our knowledge and speak up for those who cannot and take our Red Shoes and run with FASD.  We can no longer wait and keep having our loved one fail. 

Every Wednesday I have challenged myself to write on FASD and share what I have learned in my last twenty years of Parenting FASD Kids and Adults.


Saturday, September 2, 2017

Handling a Meltdown

What is a meltdown?

 The meltdown is a common among children with neurodevelopment disorders and feared and dreaded by both caregivers and the children themselves. Not to be confused with a temper tantrum. A meltdown is caused by overwhelming emotions that are triggered by ...

When a full meltdown is in progress, it can be a hard to manage. Safety -- both for the person and the child and for others in the area is most important.  It is the adults job to remain calm. Most often talking escalates the meltdown. There is no reasoning when the child has hit "the point of no return" as we called it in my house. I learned this one the hard way.

Always observe to make sure that the child is safe and that no one else in in harms way. If you observed that others are in the line of fire, remove them from the premises quietly while watching the melting child.

Often times older children tell us that they do not remember what happened.  After a meltdown the child's energy is spent and the may need time to decompress and so do you! After the meltdown and things have calmed.  It is the adults job to reflect. What was the trigger?  What did we do right? What did not work? Was there any warnings and what could I have done differently to catch it before it hits full meltdown mode.

Often times, we can avoid a full fledge meltdown by watching for the "rumblings" that are often given off by the child prior to the full onset of emotion. In time we begin to know when we are headed to the "point of no return."  And hopefully less meltdowns.


Wednesday, July 5, 2017

10 Ideas for Working with Kids with FASD - Use Teach Abilities #1

In my now 20 years of working with my kids I have learned many things.  With working with the hundreds of parents through our Parenting FASD closed Facebook group and with the literature a few threads of how to work with these kids come to light.  Every day I will share one of the Teach Abilities and just remember no two kids are alike and what works for some may not work for others.

This is meant for a generalized look at working with the kids.  Teach to the abilities
and support the areas that they struggle with understanding of how prenatal alcohol exposure can affect children and adults learn and see our world.

Kids with FASD will have many strengths and challenges.  They often say that children with FASD will be developmentally half their chronological age.  While that is the generalization,  there will be many areas of uneven and spikes of learning and development.  Each child is different and learning where they function educationally, developmentally and socially is very important for success.

Too high of expectations due to their often times advanced verbal capabilities may be very misleading as they cannot perform at that level educationally, developmentally or emotionally.  Too low they will tune out and act out.  Learning disabilities and challenges are all apart of children/adults on the Fetal Alcohol Spectrum.

Kids with FASD struggle to keep up with their peers and when stressed will use behavior as language to show they are struggling.

Some children with FASD will have many autistic tendencies and struggle with social interactions, while others will be overly outgoing, but struggle with social cueing.  Children with FASD can struggle.  We need to lessen the struggle.

We have made sure with our kids to have adequate testing and assessments to know where they are functioning and not always relying on what the school says.  We made sure to  know where they are educationally, developmentally, and socially so we can modify, adapt and advocate for their needs. Matching the learning to where they child was at that time and many times teaching, reteaching and making sure that that learning was generalized into other environments.

Neuropsychological assessments at key learning stages so we can plan ahead for what they need. We have found that a psychologist or developmental pediatrician helpful in helping us along the way.

Meeting them at their developmental level not chronological age is paramount, doing it with being sensitive to their AGE.



Sunday, July 2, 2017

Day 24 The Overlapping Behavioral Characteristics of FASD Disorders Printable.

Day 24

I have found the Overlapping Behavioral Characteristics of FASD and Related Mental Health Diagnoses in Children to be the MOST valuable tool to help educate those working with my children and adults. At all my kids IEP's I have provided a copy to every team member when educating about the enormity of Fetal Alcohol Spectrum Disorder.


Day 23

Day 23

It is the 4th of July weekend here in the United States.  My kids struggle with the noise of fireworks.
This is the yard sign we put up last year to alert my neighbors.