The Explosive Child

I finally went out and bought the book "The Explosive Child" by Ross W Greene, Ph.D. .
It has been recommended to me by several parents who are raising children with a variety of challenges. The premise of the book is that "Children do well if they can".
It focuses less on reward and punishment and more on communication and collaborative problem-solving (these are skills that are missing in children with ADHD, FASD, ASD and other diagnoses.). It is a different approach to parenting but when you think of your child as having organic brain damage or even just emotionally developmentally delayed then it makes sense that the conventional parenting techniques used in neurologically typical children wouldn't work for these children. You wouldn't expect a 2 year old to sit down and write their ABC's and then punish them if they couldn't perform that task , expecting that the punishment would, in time, teach them HOW to write their ABC's.
Here is a link to the Center for Collaborative Problem Solving
http://www.ccps.info/

This website has more info on understanding and implementing the Collaborative Problem Solving approach (also known as CPS).

I will be adding more posts as I continue to read this book and start on our journey of implementing this new parenting technique. Stay tuned for more info........

ETA: Here is the Caregiver handout for the CPS model. It really sums everything up!

From the end of the earth I will cry to You, When my heart is overwhelmed; Lead me to the rock that is higher than I. Psalm 61:2

The title sums it up perfectly. I have been reading, researching, questioning, etc., everything I can get my hands on lately that pertains to Boo's challenges. I don't feel any closer to the question that haunts me every day which is "How can I help this child?".
I am beaten down. I'm exhausted.

The truth is I can't do this alone. I need the type of help that can only come from the One who has all the answers; The One who loves Boo even more than I do.

Lord Jesus Christ, Good Shepherd of the sheep, you gather the lambs in your arms and carry them in your bosom: We commend to your loving care this child. Relieve her/his pain, guard her/him from all danger, restore to her/him your gifts of gladness and strength, and raise this child up to a life of service to you. Hear us, we pray, for you dear Name's sake. Amen.

Homeschooling it is.....for now....

I made the executive decision to pull Boo out of preschool this week. Last week he was having some problems on the bus. He took the bus for two days and both of those days were threatened by an older kid. Apparently the school district does not have separate busses for the preschoolers so they are mixed in with some older children. He also was having some problems in his class. His needs would be best met in a class where some "average" children were used to model good behavior.
Boo learns best by example. He was extremely stressed in his class because all of the children were behaviorally challenged. Ironically he was the best behaved in his class but it was due mostly to fear and anxiety.
My job is to find Boo the best possible "program". He needs intense physical and occupational therapy. He also needs speech therapy. He needs extreme structure and lots of visual cues. He will benefit from Pecs cards and from one on one learning.
All of these things have been recommended by several professionals Boo has seen. The school district is aware of Boo's needs and of his Dr's recommendations. Unfortunately, they can only offer him what they have available. (We are not in a position to hire an attorney or an advocate to fight this battle).
Right now, we are going to homeschool him. We are also looking into a few research projects that Boo may be able to take part in. He is also on a waiting list for a special partial day program at UCLA.
I am always amazed by the different hats parents are required to wear when they are parenting a special needs child. So far I have had to be an advocate, diagnostician, nurse, researcher, therapist, secretary, teacher, etc. The list just continues to grow.
As a child, I had complete trust and faith in Dr's. I believed they could diagnose and heal just about anything. I believed this was true for any Dr. that was able to earn the label "MD". My faith has been shattered time and time again in the last several years.
The first several months after Boo started having his severe rages, I would tell his pediatrician over and over that we were really struggling with him. The Dr. kept giving me handouts on handling toddler tantrums. He told me I just needed to be more consistant with him. He never once mentioned the possibility of Fetal Alcohol Effects. (He was aware of Boo's prenatal drug and alcohol exposure) I was not describing typical tantrums. I was describing hours and hours of "raging". I was describing Boo throwing himself down on the hard cement because his clothes were bothering him. I was talking about Boo banging his head on the ground on purpose when he was mad and waking up screaming several times a night. I was a frazzled mom who was saying "Something is NOT right". Have you ever had one of those dreams where you try your hardest to scream and nothing comes out? That is exactly how I feel much of the time.
I just want to end this with one suggestion. The next time you're out in public and you see a child tantruming and a mother who looks like she's about to cry, instead of judging her, pray for her! It is not always "bad parenting" that causes a child to meltdown. I don't know how many times I've heard "What your child needs is a spanking". Yes, thank you. My child does need a spanking. Why didn't I think of that. If I spank him, then maybe his brain damage will just disappear...or maybe his autism will be cured....or he will all of a sudden be able to tell his colors apart....or not run in the street for no reason........
Parenting is a journey, but parenting a special needs child is an Indiana Jones adventure!

So you suspect FASD, now what?

"The greatest obstacle that our kids must overcome is the chronic frustration due to unrealistic expectations." - Dr. Calvin Sumner, in a conversation with Teresa Kellerman.

Have you ever heard of the term "organic brain damage"? It's something I'm becoming increasingly interested in learning about. Boo has "organic brain damage". This means he was born with it. His brain did not form in the same way an average person's brain forms.

"Individuals with FASD often have symptoms or behavior issues that are a direct result of damage to the prefrontal cortex, which is the part of the brain that controls “executive functions.”" from Fasstar.com

Executive functions include:

• inhibition
• problem solving
• sexual urges
• planning
• time perception
• internal ordering
• working memory
• self-monitoring
• verbal self-regulation
• motor control
• regulation of emotion
• motivation
• judgment

So when you think of a child with FASD, you must think brain damage or “static encephalopathy” which means brain damage that is permanent and unchanging.

A child with FASD may be capable of making good choices one minute and then "forgetting the rules" the next minute. They may be able to "hold it together" for authority figures or in instances when they are fearful or nervous. This does not mean that they have the "capabilities" to hold it together when they "choose". This is a common misconception.
Children with FASD often do not make the connection between action and consequence (which is why traditional behavior mod doesnt always work well for them). They are impulsive by nature and remember, even though they may repond to a consequence one time does not mean they will retain that information or learn from their "mistake". Confused yet?

Ok, so HOW do we teach these children? What DOES work for them? Well, remember that no two children are the same. As a parent, you must get to know your child first and then adopt a plan. Here is something I found to be simple yet helpful.

8 Magic Keys:
Developing Successful Interventions for Students with FAS

by Deb Evensen and Jan Lutke

1. Concrete

Students with FAS do well when parents and educators talk in concrete terms, don’t use words with double meanings, idioms, etc. Because their social-emotional understanding is far below their chronological age, it helps to "think younger" when providing assistance, giving instructions, etc.

2. Consistency

Because of the difficulty students with FAS experience trying to generalize learning from one situation to another, they do best in an environment with few changes. This includes language. Teachers and parents can coordinate with each other to use the same words for key phases and oral directions.

3. Repetition

Students with FAS have chronic short term memory problems; they forget things they want to remember as well as information that has been learned and retained for a period of time. In order for something to make it to long term memory, it may simply need to be re-taught and re-taught.

4. Routine

Stable routines that don’t change from day to day will make it easier for students with FAS to know what to expect next and decrease their anxiety, enabling them to learn.

5. Simplicity

Remember to Keep it Short and Sweet (KISS method). Students with FAS are easily over-stimulated, leading to "shutdown" at which point no more information can be assimilated. Therefore, a simple environment is the foundation for an effective school program.

6. Specific

Say exactly what you mean. Remember that students with FAS have difficulty with abstractions, generalization, and not being able to "fill in the blanks" when given a direction. Tell them step by step what to do, developing appropriate habit patterns.

7. Structure

Structure is the "glue" that makes the world make sense for a student with FAS. If this glue is taken away, the walls fall down! A student with FAS achieves and is successful because their world provides the appropriate structure as a permanent foundation.

8. Supervision

Because of their cognitive challenges, students with FAS bring a naivete to daily life situations. They need constant supervision, as with much younger children, to develop habit patterns of appropriate behavior.

When a situation with a student with FAS is confusing and the intervention is not working, then:

• Stop Action!
• Observe.
• Listen carefully to find out where he/she is stuck.
• Ask: What is hard? What would help?

I don't have the answers. I'm just beginning this journey myself. Boo has seen so many professionals who have glossed over the fact that he was drug and alcohol exposed. They attributed his behavior and emotional challenges to genetics or our parenting. The sad fact is that there are no hard markers for Fetal Alcohol Effects or Alcohol Related Neurodevelopmental Delays. 80% of people affected by FASD have no physical features of the disease. It is their brain that is affected. It is estimated that 70-85% of inmates need substance abuse treatment. It is also estimated that 61% of adolescents with FASD have been in trouble with the law. These statistics are both shocking and terrifying. FASD is real. We need more education out there and we need more funding for research. Our prisons are full of men and women who started out as innocent children born to women who drank alcohol and did drugs. Who is going to stop this cycle?

Fetal Alcohol Spectrum Disorders

"Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications."

"FASD is the leading known preventable cause of mental retardation and birth defects."

From the National Organization on Fetal Alcohol Syndrome.


~~Today I had the opportunity to speak to a leading researcher on FASD at the University of San Diego. This extremely busy man took time out of his day to return the call of an exhausted and frustrated mom. Dr. Ed Riley has done extensive research on FASD and it's effects on the brain. He is in the trenches, so to speak, with parents, educators, neurologists, and other psychologists like himself who are working tirelessly to educate people on the irreparable damage caused by prenatal drinking.
My story was no different than most. He listened intently while I told him all the diagnoses we've received so far with Boo. He assured me that everything I had told him about Boo was right in line with ARND (Alcohol Related Neurodevelopmental Disorder). It is something that is not easily diagnosed by professionals. It is not a clinical diagnosis (yet).
Boo's best hope right now is getting intervention services for his Autism and ADHD diagnosis. Unfortunately, ASD is where the money is right now. FASD, while it affects 1 in 100 births is not something that is very well known. Most children with FASD are not diagnosed properly. They are labeled as having ADHD or even Conduct Disorder and everything in between. 80% of children with FASD have little to no physical anomalies and yet their central nervous system has been forever damaged. Unlike other disorders, FASD cannot be cured. It is organic brain damage and will stay with a child for the rest of their lives impacting everything from their education to their relationships with others. Many people with FASD are unable to leave home when they are 18. They are unable to function as an adult. Their behavior and emotional immaturity often get them into trouble with the law.
There may not be a cure but there is a prevention. There is no known amount of alcohol that is safe during pregnancy. Drinking can cause lifelong brain damage and my son is walking proof of that fact!

More to come on treatment for FASD...........

I found this poem today.....

Heaven’s Very Special Child

A meeting was held quite far from earth
It's time again for another birth
Said the angel to the Lord above
This special child will need much love
His progress may be very slow
Accomplishments he may not show
And he'll require extra care
from the folks he meets down there
He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped
So let's be careful where he's sent
We want his life to be content
Please Lord, find the parents who
Will do a special job for you
They'll not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon they'll know the privileges given
In caring for their gift from heaven
Their precious charge, so meek and mild
Is "HEAVEN'S VERY SPECIAL CHILD"

- Author Unknown

I have often been asked "Do you feel resentment towards Boo's bio-mother for her choices during her pregnancy ie: alcohol, drugs, etc?" My answer is always a simple "No". I remember leaving the hospital the night we got Boo. I cried the whole way home. The one thing that kept going through my head was how lucky I was to be bringing this beautiful baby home. This poor mama just gave birth to her son and will never feel the joy of taking him home. She will go home empty handed and empty hearted...back to the streets. She has no one waiting to shower her with baby clothes and diapers. She will return to her life that is filled with pain. She is a product of the failing system. She was a broken person with a mental illness and a terrible addiction. She was unable to provide for herself let alone her child. Was I angry with her? NO. My heart ached for her. I thank God every day that He picked us to be Boo's parents. I pray for Boo's bio mom often and am eternally grateful to her for bringing our son into the world.