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

A Mother’s Day post

I’ve been absent again… too much to do to take the time to sit down to write about it all again…

It’s Mother’s Day.  It’s been good.  I ordered a gift for my mom early…

It was a gallery wrap of all of us on the beach this spring break…

She’s easy to buy for, pictures of her family are her love… she is everything that anyone could want in a mom.  Devoting all her life to her family.  We are blessed indeed.

Mother’s Day as a single mom is something that I have tried very hard over the years to not lose my focus.  I keep my expectations low… & then I get some surprises.  Leah got up and made breakfast… all the boys remembered to at least say “Happy Mother’s Day” so that was good.

Its good.  I don’t need things.  I don’t need attention.  I don’t love the day.  I have learned not to let myself get worked up with unmet expectations.  It’s a trap. It’s from hell.  It’s not where I am going to let myself go.

Yet, I found myself in the midst of the day, dealing with my daughter & her emotions.  Her tantrums that have been on the rise.  Her anger.  I found myself weeping.  Unable to stop.  Unable to let the disappointment go.  Not necessarily because of the day, but perhaps that why it was harder.  I was working so hard to keep myself under control & not give in to those unmet expectations.

Kiahna’s behaviors have grown worse.  I have been working with medications yet again to try to help her level out.  I thought I had it figured out.  Today when she ran from me in church and hit me & told me how much she hated me.  It was sheer disappointment that ran through me.  I thought I had figured out what was going to help my baby girl. 

I don’t know.  I don’t know what’s going to help her.  I don’t know what the future holds.  I don’t know how long I can keep parenting her with these fits of anger.  I just don’t know.

I know the ONE who does know.  He seems a little quiet & slow to my human mind on this one. 

I am trying to wrap my head around parenting a child who is showing more & more autism signs.  Keep her sensory needs met, especially when she refuses the treatment, which is virtually impossible unless I just let her run & chase after her… which works here at home, but not so much in church in heels & with people watching.  UHG

She’s a gorgeous girl.  We recently got her hair relaxed.  She looks so much older.  If only there was a way to do that same thing to her heart & mind.  Relax.

 

 

Prayers are needed…. Thanks so much.

Pam

Where we are with Kiahna today

The issues that Kiahna lives with put us all over the map.  We have good days & horrific days.  We have okay days & days that make you think we will never live this way for the long haul.

Recently, things have improved drastically.

We began seeing a new neurologist.

We began Occupational Therapy.

We began services with an agency that is new to our area Meridian. 

We stopped some medications & began some others.

Today we are in a place where we are living semi-normal lives.  She is stable enough to go places without melt downs.  As long as I stay aware of her sensory needs & don’t let her become over stimulated or worn out.

She has been able to handle the Christmas season with ease.  The transition to home from school for break.  She was invited to play at a friend’s house & dealt with that with ease.

Praise the Lord!

The new neurologist ordered some testing that we had never had done before.  

The first was a sleep deprived EEG

Thankful for the help that my parent’s gave me preparing for this test.  We were to keep her awake most of the night & then drive her to FW for the testing at 8 am.  They kept her awake so I could sleep & then drive her in to the tests.

After this test we attempted an MRI.  She didn’t cooperate with that.  It’s a scary test!  We had to reschedule that one with sedation, we had to wait for that to be approved by insurance & that is coming up next week.

We just received the results of the sleep deprived EEG & they were abnormal enough that the doctor has ordered more testing.  This testing will require 24 hour admission to the hospital & the EEG will be recorded all during that time. 

The tests will confirm if she has Epilepsy.  She has not had any obvious seizures.  But, the testing was still abnormal enough it can’t be ruled out.  If she has the same issues while she is awake that she has when she is asleep, they will diagnose her Epileptic.

Add it to the list of labels.

When we began the latest medication round we had a great 2 weeks & then the behaviors began again, we increased them & have been on the level for a few weeks again… it’s a day by day thing.  Waiting for the medication to stop working.

Continued prayer is vital.

Pam

When the meds stop working…

…and start working against you…

It happens very quickly with some meds & you know right away it’s not a good fit.

It happens very slowly with some meds & you don’t realize until you are living a nightmare that maybe it’s the meds.

Sunday.  A tantrum during Sunday school.  Can’t even send her into the classroom alone.  Don’t trust her behavior. 

Can’t handle drawing a smiley face on your baby Moses??

Something is seriously not okay with this.

I’ve had the little thought before that maybe it was the meds turning on us.

I finally took the plunge and didn’t give her the medication on Sunday night.

Monday was a different ball game.

I had a different child.

I don’t know whether to be angry or rejoice.

Rejoice.

There is nothing I can do about the past.

She takes the meds for her ADHD, so without the meds the ADHD, impulsiveness, sensory issues are all heightened… BUT AT LEAST SHE IS RATIONAL!!

We don’t have to live like we are walking on egg shells because she can’t deal with ANYTHING!!

I even took her to Lucas’ ball game tonight!  Her first game this year…  She did fabulous!

I guess the sun was a little bright for her!

THANK you so much for your prayers… life isn’t perfect, but it’s, like a bazzillion times better than it was just a few days ago… what a huge relief.

A few pix of my kids playing football now…

Lucas…

Zach…

Leah’s first homecoming powder puff game… with interception!!  check out that smile!

Their freshmen team… they were awesome, they would have won too, but the seniors cheated… so the seniors won.  (leah is the second from the left on the front row)

And Zach’s homecoming activity… Sledgehammer volleyball… they won best costumes…

Sometimes, it’s best you just don’t ask!

Pam

In need of a change…

My sweet daughter is so hard sometimes…

The disease that she lives with is so hard to figure out & so hard to medicate…

Her moods are all over the place without meds… and her meds help sometimes… other times they don’t… they wear off & life becomes incredible hard for her…

Hearing “no” is a tragedy in her mind… it puts her over the edge & she can’t pull herself back in on her own…

Extremely hard…

The adjustment to our summer schedule has been very challenging… she loved kindergarten & her teacher & her routine…

She’s even said, “I want my school back”…

It will be here soon enough… but in the mean-time we have to survive…

Going for a meds check tomorrow & probably will change something… please pray for us… vacation next week… that’s another thing that is just hard on her… which makes it hard on me… which isn’t vacation…

Pam

Because I really don’t know what to say…

I have found myself shying away from writing probably for more than one reason… I can tell myself “I don’t have time”, but reality is we make time for what we want to do.

I don’t know what to say might be more accurate.

Or, I am so burnt out by the end of the day I don’t have the energy to write about it.

Or, I am so afraid I don’t want to put it into print because the truth is rather painful.

Or, I am fearful of being mis-understood… or mis-representing… or just plain being wrong.

Because with my youngest, I am on a learning curve every day.  Learning about special needs & FAES… things I’ve never been exposed to on a personal level… things that frighten me & discourage me… and keep the future looking very uncertain.

Since the last time I wrote about Kiahna, she has improved in her behaviors dramatically.

I am extremely thankful.

But.

I have been told that I should “enjoy the good days, because history shows that when you have FAS the medications work for a time and then quit working”

The day that Kiahna got the flu, we also began a new medication.  It was secondary to the one she was already on for ADHD. 

ADHD medications have made her act out more violently…

So, we added a “mood stabilizer” to her ADHD med.

When she got the flu, we had a full week of her being very, very docile & sweet.  It was heavenly.  You have no idea.

As she recovered from the flu & her energy returned, we began to see that her behavior was improved. 

The past week of school has went much better than any time before for her.  The teacher reports that she is blending with the other kids & that she is not disrupting the classroom, and other positive things like that.

For me she has done much much better, but when I tried to take her into a store this past week the “overstimulation” was apparent quickly…and we ended up having a stand off before we could get her back home again.

I feel like I let down my guard & began to feel relaxed about her behavior & tried to do something “normal” with her along & got kicked in the gut.

Then we go to the cycle of my fear creating her fear & escalating her behaviors… Jadon escalates her behaviors, they feed off of each other & reactions can get ugly quick.

I am extremely thankful things are going better at school… things are better, but the condition isn’t going anywhere… & we have a long road ahead… which is overwhelming so I’ll just look at the step we need to make today.

In April we need to re-write her IEP.  I have been in touch with another parent who has 2 FAS children & she is going to help write it up & be our advocate. 

I feel like with this improved behavior the temptation might be to overlook many things that the IEP needs to contain… so we have to put in place what we do when she grows & the medication stops working… very,very hard to think about for me.

Moving forward onto today… when I will take her to church & pray she doesn’t have a tantrum… and I’ll take her to my parents & pray that she doesn’t melt down or hurt any of the kids… and I’ll hope to have enough left to ask her to go sit and listen to the swing choir sing tonight… It’s a lot to ask of her… but it’s our life…and I am not sure what else to do.

Pam

A better week

Last week was better.

Less fits.

Less anger.

Less overwhelming frustration & panic.

That last one was about me.

First 3 were about Kiahna.

To what do I credit it? 

God. Prayers. Promises Kept.

God’s brought us a better, more knowledgeable counselor, and the means to pay for it.

God’s closed the door on one doctor for medication & opened the door for another with  much more expertise with K’s disability.

God’s provided a school full of teacher’s and administrator’s who love Kiahna & are doing so much to help her.

God’s giving us (ME) the willpower to remove sugar from our diet, along with food coloring.

God’s teaching me to understand more about how Kiahna’s brain processes the world & alleviating my frustration levels.

God’s created medications that are helping a little bit.  Still waiting on Him to open the door with the insurance to approve for the med to be given the way the doctor prescribed & the way that was helping.

Encouraged by K using words to request her preferences rather than just getting angry.

But, realizing that most of the time she still cannot regulate her moods & will take a small issue and make it into s mountain so quickly.

And something that was a small issue one day will be a huge issue the next.  Very unpredictable.

We have a long road ahead… one that may last her lifetime in one way or another… but unlike last weekend, this week I’ve had a few glimmers of hope.

God is Good.

Pam

Back to school…

The kids went back to school on Wednesday.

Kiahna refused to get out of the van on Wednesday.  And on Thursday.

Today she got out in the car pool lane without a fit.  Good news!

Her behaviors continue to be a huge concern. 

Put her back on the medication she was on before the last one we tried.  She seems to be just as angry off the medication as she is on it.  At least on the medication she is calmer & less impulsive.  We will see how long this lasts.

Her neurologist no longer takes our insurance.  Found that out yesterday.

Taking her to her new therapist today.  She doesn’t take our insurance either.

A week from today we are meeting at school to go over her IEP.  The special ed teacher admitted to me today that Kiahna is the first diagnosed FAS child she has worked with.

UHG.

DEAR GOD…. HELP!!!!

James went back to college on Wednesday too.  It was really nice to have him home.  It went well.  He’s maturing a lot and I am really proud of him.

Track meets start up for him next weekend.  We will try to get to some of them, many of them are hours away from here. 

Zach is 16 & 180 days today.  Officially old enough to take his drivers test & get his license. 

This could be good or bad.  We will see won’t we. 

(repeat above prayer here)

Leah’s birthday is Monday.  She will be 14.  She is planning a party for next weekend.  Wants to have boys and girls. 

shudder.

pray above prayer again.

I purchased a family membership to the new wellness center about 5 miles from our house. 

I’ve walked/ran 10 miles this week.  Swam some laps too.  Mentally I can see a big improvement in myself.  Physically, my body is screaming some things I can’t repeat on this family blog. 

It will be good for us all.

Better diet.  More exercise.  Good things.

Pam

First day of the new year…

How are you spending your first morning of this year?

I am looking through recipe books.  Finding recipes that don’t contain milk, white flour, or sugar.

Needing to buy some groceries.

Needing to pack food & clothing for our little family trip that we are going on tomorrow.

Wanting to feel positive and encouraged about the new year.

The old one ended quickly when we tried to spend some time with a large group of friends and my 6 year old bit someone.

My 6 year old who I have recently been told has FASD.  Fetal Alcohol Spectrum Disorder.

As I read and educate myself, I see her fitting more and more into this box.

I find myself fighting tears as I realize this is our life.  It’s not going to suddenly be something she “grows out of”.

I want to get her a t-shirt with a full explanation on the back of her hidden disability & how she really isn’t a bad kid.

As she makes the dog growl for millionth time at my feet.

I met with a new counselor this past week.  One who I believe will help me & her learn & deal with this disability.

I learned of a place in Chicago where I can take her and have a full neuro-physc screening done, that is supposed to be able to tell us what parts of her brain are working properly and which ones aren't.

Those things are encouraging.

When school starts back up again next week we will set up a meeting with all the people who work with her.  We will make her a new IEP based on her new diagnosis.

Will school get better?

Maybe.

Maybe not.

We just tried our 5th medication on her to try to alleviate some of the symptoms.  Fail.

I am learning that FAES is brain damage. 

Diet changes seem to help many people with FAES.  (why I am going through the recipe books)

Neurotransmitters that send messages from the right to left & vice versa sides of the brain don’t fire like they should.  Medications don’t absorb like they should.

Everyone with these disorder is different, because whatever was developing the day that the substance was abused is what was damaged.

I need help.

I know God is providing it. 

Meanwhile, part of me is so hurting.  Grieving.  Aching.  Angry.

Pam