This morning’s newsfeed…

Deep sigh…

This morning an article showed up in my newsfeed How to stay sane & survive fetal alcohol spectrum disorder.  Wow, who came in to my house & read my mind & wrote this article? 

Some of the challenges in dealing with the severe meltdowns that we have here center around #1 my fear of her hurting someone else or herself so I step in & intervene & things escalate.

#2 when the meltdowns, poor behavior, language happen around other people who then in turn will either try to “help” me with her or I begin to feel like I should be doing something more or different than what I am to make sure that this behavior stops.

Did this  yesterday.  Twice. Family vacation is ahead, I know it’s going to be difficult. 

When you look at Kiahna without much knowledge of FASD, Autism, SPD or ADHD… all you can see is a spoiled, mouthy brat.  She should be “disciplined” she “shouldn’t be getting away with this” she “is a product of being raised by a single mom” she “just needs a good strong father figure to discipline her” she “needs a spanking”…

Well, some days I fall into that line of thinking.  Those are the really bad days.  The days that nothing gets better & things just get worse & worse.

Understanding that there is a disconnect between “cause” & “effect”… that the same lessons must be learned over & over & over again.  That the level of maturity of her brain is not that of someone who is almost 8, but more in line of her 3 year old cousin.

If you didn’t link over to the article I mentioned in the beginning, here is a photo from that article, that maybe you have or haven’t seen…

Absolutely heart breaking.

I like how Jeff says he has a copy of this photo in his wallet to take out & look at to remind him.

Part of me really still struggles to believe that my beautiful little girl really has this kind of life long disability.

But her growing behavior issues…okay, maybe they aren’t really growing, but maybe the fact that she is growing & the behaviors are just looking more & more awkward because the “average 8  year old” would not act that way.

I really have no idea what I am doing or how we are going to get through this.  I can’t tell you how.

Our needs are much prayer support.  Physical support if it can be done with a knowledge of FAS & it’s buddies.  Emotional support.  Respite.  Education for all of us.  Wisdom.  Protection for all of us. And more prayer.

Pam

So, what is it?

I have been learning a lot on the road of life… Not things I ever dreamed I’d learn.  Or ever had any desire to learn.  It’s good things.  Things that I never knew I needed to learn. 

God has a way of doing that when we have the desire to do what He has asked of us.  Funny how simple it feels to pray that prayer & then how hard it is to actually live out a life that does that.

Been struggling with trust again.  Been struggling to try to figure out things that I just might not ever figure out.

You probably know that my youngest daughter was diagnosed with Fetal Alcohol Syndrome a few years ago.  More recently we have added Sensory processing disorder to her diagnosis.  And now we are on the verge of adding an Autism label to her list.

A new therapist we have began working with puts it well when she says “it doesn’t really matter what you call it, you still have to deal with the behaviors”… so true.

The humanness in me want to get a name to it.  Then I want it fixed.  I want a solution.  I want a pill. 

Uhg.

Sorry, if this is a repeat for many of you to read again. 

I feel like I am learning more & more about her… but still have a boat load of things that I don’t understand, & I don’t know if I will ever understand.

This is what I know.

• Transitions are hard
• Change is hard
• Language understanding & communication & comprehension are hard
• social interaction is hard
• friendships are hard
• judging right & wrong choices is hard
• overstimulation leads to melt down tantrums
• she is getting stronger & her violent outbursts are getting scarier
• medication is not helping much at all
• Shes on a ton of vitamins & it’s hard to know if they are helping much.  The best one I have found has been Gaba.
• Shes extremely defiant & strong willed.
• there is no cure
• emotionally she is at about the 2-4 year old range.  She has matured in the past year for sure, but still isn’t where she should be.
• Occupational Therapy is extremely helpful.  It’s needed on a very regular basis… sometimes every 15 minutes depending on what is going on.
• When she’s having a tantrum if I pray she says things that make me feel there is a very real Spiritual aspect to this also.

I am in way over my head, I know that.  I have been blessed with incredible support at school, but they feel over their heads too many times.  We have began work with a new counseling/therapy place & discontinued working with the one we were with after months of really know progress & 3 people leaving that facility.

Specific prayer requests.

• Help, healing & support for all of us.
• Wisdom
• Safety for her & those around her when she goes into tantrum mode.
• A MIRACLE

“God lead us to Your plans & Your path for this baby girl.  You have a plan.  We need help to know how to follow that plan.  Bring us the help & support that You have for us.  Open the door that no man can open & close the doors that do not lead us to the things that are Your will”

Pam