Notes and Quotes from "The Connected Child" by Karyn B. Purvis, PhD., David R. Cross, PhD., and Wendy Lyons Sunshine

When disciplining a special needs child, the fewer words the better.

Teaching Respect:

"Hold it.  It is not ok for you to talk to me that way.  Tell me what you need. And tell me with respect."  

"Let me see those eyes...I love to see those eyes...you can say anything you need to say to me.  If you think that I'm being mean, you can say that.  If you feel angry, you can say that.  Just say it with respect.  Now tell me what you need."

Important lesson:  your child can always say what he feels and he can always ask for needs and wants, but it all must be said appropriately.  

The child may use behavior to communicate what he/she can't express verbally.

When you say "no"

*before he melts down, say, "wow that's a great job of accepting no" 

 *sandwich the "no" with positive comments

*praise immediately

If the child asks without respect, the answer will always be no.

general rules to live by:

*respond quickly

*don't get into a discussion

* use fewer words

*be instructive and corrective

IDEAL:

I= Immediate response (to mis-behavior)

D=Directly with child (eye contact)

E=Efficient (least words)

A=Action based--actively directed re-do

L=Level your responses at the behavior, not the child

Rules of Connected families

A child may not dominate the family through tantrums, aggression, back talk, whining, or any other tactic.

Parents are kind, fair and consistent, they stay calm and in control.  They admiinster structure and limits, but they also provide a great deal of nurturing, praise and affection.

A child is encouraged to use words to express his or her needs directly and respectfully.

Parents honor a child's boundaries and respectfully listen to his or her needs and requests.  They never shame or ridicule a child's perspective.

Parents meet all reasonable needs and requests.  They say "Yes" whenever they can.  Occasiionaly they allow a compromise and at times they say "No" and deny requests.

What we're dealing with...

the trust and caring needs of an infant
the independence needs of a two-year old

the shame issues of a three-year old

the concrete thinking of a four-year old

the reasoning skills of a five-year old

the street smarts of a sixteen-year-old

all wrapped up in the body of an eight year old

Parents respond to misbehavior immediately.  They redirect the child to better choices, let him or her practice getting it right and then praise their child for improvement.  Once the conflict is resolved, they return to playful and warm interactions with their child.

checklist (want to answer yest to all:)

is my approach playful and interactive?

do i show that i genuinely value my child?

do i alert my child to what's coming next?
do i enforce consequences consistently?

do i mean what i say? do i follow through on my words?

am i responding to misbehavior within three seconds?

am i guiding my child through re-do's

do i let my child make choices and problem-solve?

do i make regular eye contac when i speak?
do i give my child my undivied attention?
do i give whole-hand, affectionate touches?
do i make affirming, warm, positive comments?

do i behave consistently?

do i facilitate joint problem solving with my child?
do i help my child self regulate and develop self awareness?
do i encourage my child to tell me his or her feelings?

do i ask my child what he or she needs?

do i create a schedule that accomodates my child's fundamental needs?

do i simplify my life enough that I can give my child my attention?

"think it over" place...you sit near the child...they tell you when they're ready

Intercept with words (stop) and child stop his own behavior...success!

Defiance:

"It's not OK to talk to me like that. You can alwyas have your feelings, but you must always talk to me with respect.  Try that again"

Play:  let yourself be directed in play by your child...set timer for 15 minutes and give him your full attention.

Medication: can provide about 30% of the desired solution.  Taking drugs for behavioral problems is similar to taking antidepressants when somebody you love dies.  The medication acts as a short-term crutch, to help you get you through the really bad period.   Drugs are a means of giving temporary support until the person can live without them.

Television, movies, electronic games: you need to increase the time your child spends with people and decrease the time he spends alone with machines, etc.  An hour a day of TV, etc. is ok...but these things cater to short attention spans and you want your child to engage in activities that extend attention spans.

NOTEBOOK PLANNER: A LIFE SKILL

OK here is my latest and greatest idea for giving my son a consistent schedule:

*A simple, basic, spiral notebook.

*I write his schedule in the notebook...a few days to 1 week at a time.
*He can look at the schedule each day/week to see what is going on for the day, and prepare himself for it.

This is the best I can think of, thus far, to give consistency to my son's schedule.  The problem and reality is that I can't just put up one schedule that will be the same day by day...our schedule changes a little each week, day, and/or month.  That's why I've always been frustrated with putting up a daily schedule for my son...it seems I do it for a few weeks and then stop, with frustration, because the reality of life is that EVERY DAY IS NOT THE SAME!

So, I think the consistency comes in giving my son a sort of "planner".
That's how I schedule my life...so why not begin teaching him that life skill?

It starts with my writing the schedule in for him each day...but can lead into him writing and keeping a "planner" for himself.

I LOVE this new idea...if it actually lasts and works, then I will REALLY LOVE IT!

Please be Patient with us...

Brain injury world is a hard place to live in.
Please be patient with us.

Success! in a Social Setting :)

My 10 year old son, Sam, who is diagnosed with an F.A.S.D. had success in a social setting.  One of his biggest challenges is participating in social settings, because his extreme anxiety prevents him from participating.
Every year we have our "Annual Cub Scout Swim Party" where we set up a water slide going down a big hill.  For the past two years when we have come to this party, Sam has sat on the side and just watched all of his peers enjoy the water slide.  His anxiety prevented him from participating.
Well, this last August when Sam attended our "Annual Cub Scout Swim Party", we put supports in place.  First of all, we let Sam swim in his clothes! (much less invasive then a swimsuit that he's not used to wearing).  Also, we brought Sam to the activity before anyone else arrived and let him see the water slide and let him go down the water slide all by himself without anyone watching. These supports made the difference! When others arrived and the party began, Sam actually participated!  He went down the water slide multiple times with his peers, laughing and having fun with them.  In fact, he participated the entire evening, with a smile on his face. We were so happy to see our son having FUN with his peers! :)

Simple thoughts to help one UNDERSTAND FASD

Insights from Jeff Noble: Fetal Alcohol Syndrome Forever w/ Jeff Noble
FASD IS FOREVER, FRUSTRATION IS NOT

Just because someone living with Fetal Alcohol can say "it" doesn't mean they understand "it". Often times their expressive language is greater than their comprehension, making them appear more capable than they really are.

People who think you are coddling someone with Fetal Alcohol are wrong. You're not coddling, your accommodating their disability, and to do that necessitates a different parenting style.

People with Fetal Alcohol have a desire to do well and to please..but because they have organic brain damage it can limit their capacity to follow through with those desires, making it frustrating for both parties.

If we change the way we react to someone living with Fetal Alcohol and their behaviors, they will change the way they react to ours. You can't be a lit match going into a fireworks factory.  

Challenging behaviors from people with Fetal Alcohol are symptoms of a poor fit. A poor fit between who the person with Fetal Alcohol really is, and what is expected of them.  

Many individuals with FASD can perform short-term projects well, but have much more difficulty with sustained effort over longer periods of time..That's because their brain has to work twice as hard, so think of them more as sprinters, not long distance runners.  

For someone living with Fetal Alcohol, medication should never be response for a poor environment. Don't keep trying to change the drugs, keep trying to change the environment. Medication should be the last intervention, not the first. Would you give someone medication just because they were blind?

People with Fetal Alcohol can see things in others (that is concrete) but they cannot see it in themselves (that is abstract). That's why they are good at pointing out your flaws, yet unable to see their own. Another reason why it's Brain not Behavior 

When we get upset at someone with Fetal Alcohol, (because we do) focus your anger on the brain damage, not the person affected by it.

Did you know? suspending someone with Fetal Alcohol from school is like suspending a blind person and telling them "When you come back from your suspension, you better not be blind"....Don't hate accommodate.

One of the toughest challenges caring for someone living with Fetal Alcohol is that you are fighting traditional thinking all the time! FASD is anything but traditional!

Celebrating small successes with Fetal Alcohol will lead to even greater victories, because where there is competence, compliance will soon follow.

If your loved one with Fetal Alcohol is having a tough time at school, decrease the amount of work. It is better for our guys to complete 100% of less work, rather than 0% of more work. I wish everyone a successful school week.

Although it may not look like it sometimes, your loved one living with Fetal Alcohol loves and needs you. More often than not they are just as frustrated with themselves as others are with them

One of the most frustrating things for a caregiver is to offer help to someone living with Fetal Alcohol to no avail. The reason is because of their deficits in executive function, individuals with FASD are the least likely of any group to consider themselves disabled and the least likely to see that they need help.

When working or living with someone who has Fetal Alcohol there is always the Honeymoon period - at first we provide tons of support - then we get comfortable and we increase expectations and decrease supports. Person living with FASD hasn't changed - we have.

An often overlooked characteristic of Fetal Alcohol is poor judgement. So, when you're shaking your head after they have done something silly, remember, it was their disability that made the call, not their character.

 If we're telling people with Fetal Alcohol that they “must” learn or “must” take responsibility, then we “MUST" accommodate their disability in order for them to do so.

One of the toughest emotional hurdles as a Fetal Alcohol caregiver is, giving up what we thought life was going to be like, in order to take on what it really is.

Some insight on what it means to think "CONCRETE"

"People with Fetal Alcohol can see things in others (that is concrete) but they cannot see it in themselves (that is abstract). That's why they are good at pointing out your flaws, yet unable to see their own. Another reason why it's Brain not Behavior." -Jeff Noble

"Our kids/adults with FASD often can remember things they see much better than hearing and other mediums. Seeing is concrete. But I believe that they use visual memory to record the events or what they see and they can access that more easily with the neurological damage. (For my daughter they confirmed that her memory was impaired and only facial memory was intact). For her seeing is her greatest way of accessing her skill set and memory. For my youngest son, he could remember in vivid detail events and have no memory of anything he did. My children's neuropsych reports confirmed my suspicions over the years.

Thinking further on this.... Often our kids/adults can remember what everyone else did, wore, etc. but cannot always remember what everyone said accurately. They are using visual memory, and we know that auditory processing is impaired.

So they may remember the details, but miss some of the auditory details.
But even bigger, if they are relying on visual memory of the events... where are they in their recordings/memories? They are not there.

Think about it they are the camera operator and they cannot see themselves to remember what they did, how they reacted and they often can argue that they did not do something or will not accept any responsbility of their actions. But how can they with their brain injuries if they are not there. It can lead to blaming everyone else but themselves, faulty memories of the events as much of the story is all left out because of they cannot see the whole picture.

I tested my theory early on and used a camcorder to record the events in a room. My children were stunned by their behaviors and they held themselves accountable when they could visualize what happened. We used a wall of mirrors in our family room and they could sometimes see themselves interacting and thus remembered more of the family time. We could work on behaviors because we could replay them and see what they needed to work on.

Holding one's self accountable without seeing oneself, is an abstract concept, which requires planning skills, cause and effect and higher order thinking. Which we all know our kids/adults struggle with. It can also lead to our kids being suggestable about that they did something that they didn't. In the criminal justice system they say that often people with FASD take responsibility for things they did not do. Some to to suggestability, but I believe that they cannot remember their interactions or their memory deficits leave them vulnerable.

I have since then understood that I need my kids to see what they need to do, I need to talk less. I also use my phone camera not as a punishment but to help create some awareness of how they interact with people. To see themselves.

I also video family events with her in them as she cannot remember being someplace sometimes and she can enjoy some of the same memories we have as a family.

I use post it notes for a chore instead of talking, I use a text message to my daughter 21. When she sees it, she can process it in less than a couple of minutes and finish the one task chore in less than 5, but with prompts and reprompting it would take 15 to 20 for the same task. I am not badgering, getting frustrated etc. and she can have success."

copywrite 2013 Ann Yurcek

"I Will Never" by Vicki Brewster: this Poem says it all

I Will Never
I will never have the children I dreamed of adopting-
But I do have the children
God planned for me to adopt.
So I will adopt new dreams
for my family and children.

I will never be able to be the mom I want to be.
But I am "their" mom
So I will be the mom they need.
I will never have a "normal" day - one without meds,
doctor appointments, therapy, IEP meetings.
But I do have normal moments.
So I will learn to savor the moments
and take each day as it comes
I will never be able to assume my children can
follow the simple rules, act appropriately,
understand the consequences of their actions,
or be safe.
But I can surround them with a support system
who will think for them,
remind them of the rules and consequences,
and keep them safe.
So I will be their external brain.
I will never know what my children could have been.
But I can celebrate the wonder of who they are
and what they can become.
So I will give them all the love, support,
encouragement, and the tools they will need
to become productive adults.
I will never be able to change the fact that
the birth mother drank during her pregnancy.
But I can forgive.
So I will not condemn, pass judgment or hate her.
I will never forget the damage that alcohol has done
to my children's brains.
But I can make a difference for another child.
So I will share my knowledge and experiences
as often as I can.
I will never see another child screaming in a store
and just assume he's misbehaving due to poor parenting.
But I can sympathize
with the stress and frustrations of meltdowns.
So I will smile
and offer words of encouragement and support to the mother.
I will never hear another horrible news story
about a child in trouble with the law
and not wonder - was he FASD?
But I can pray for them and their families.
So I will pray for the ones in the news
and the ones we don't read about.
I will never know a bigger joy
than watching my children master a new goal,
remember a rule, or sleep thru the night.
But I can lower my expectations of them and myself.
So I will celebrate with them
every mountain climbed and hurdle crossed.
I will never have a day that is not wholly consumed
with the results of a woman who drank during pregnancy.
But I can raise the community's awareness,
education and support
of this totally preventable birth defect.
So I will.
So I will.
by Vicki Brewster, May 21, 2004