The Daily Struggle Of Parenting A Child With FASD

    Does anyone else struggle with the intensity of parenting your child with FASD? Maybe it is a personal problem of mine, because I can be floating along providing the structure and support my child needs, and then I get a glimpse into the lives of those who's children do not require mom and dad to constantly be on guard to thwart a meltdown or catastrophic event, and down I go. I can't help but wonder what life would be like if we didn't have to subconsciously be on guard all the time.


Constant Supervision:

He has to ask for permission to use the bathroom -because unless he is in his room, I need to be right by his side or he WILL get into something he shouldn't. 

Ask for permission to flush said toilet -I can quickly forget he is in the bathroom and the longer he is in there, the more things he can and will find to flush down the toilet. On the days when he is dysregulated, I need to check the toilet because who feels like digging unflushable's from a full toilet?!?

Listen to make sure his door latches as he goes back to his bedroom -because he learned if he doesn't latch his door, he can sneak out of said room without my being aware and roam the house.

Check the camera that is in his room multiple times because even though his room is, "Joseph proofed," he can still get into trouble. My biggest fear is that he will accidentally strangle himself because he loves tying things around his neck. And no, he doesn't understand why this is dangerous. He loves strings, rope's etc and even though he is banned from having them, he is sly enough to sneak them into his room without getting caught.

Constant Evaluation:

The three younger children sit around the kitchen table to do their school work. If I need to step out of the room to take a phone call or even use the bathroom, I remind them of our rule, "No talking or communicating while mom is out of the room." Without fail, Joseph will talk or make make motions with his hands to get his sisters attention. When reprimanded, he melts down in tears because, "I was sitting here quietly and you say I was talking!!!" If I tell him I could hear him, he gets a sheepish look on his face and says, "Well, I did talk a little, but it was just a little bit!" There are days when he is accountable and days when his not and I have to constantly evaluate whether or not his brain is functioning well enough to tell the truth.

I can't send him on an errand out of my sight without first thinking, "Is he able to follow directions today?" Next, "Is it safe to let him go down to the basement...what is down there that he might get into? Does he have "sticky fingers" today?" 

As with many people with FASD, he doesn't have a filter on his mouth, what he is thinking comes out, much to the dismay of his siblings (and sometimes his parents). When telling him to sit quietly, we have to take into consideration his ability to actually be quiet. There are days when his mouth runs nonstop, all day long. I often tell him he has to stop talking because my ears are hurting. In actuality it is my brain that is hurting from constantly trying to decipher what it is he is trying to tell me. It is so easy to get frustrated with the continual monologue that flows from his mouth but it is unfair to show that frustration if he really cannot help it. The hard part is figuring out what he can and cannot help.

It is only when I am not responsible for him for a few hours, that I realize the huge amount of brain power that goes into keeping him safe from himself and the world around him. Someone was recently in our home for a visit and commented in an astonished voice, "He takes an incredible amount of supervision!!!" I felt like saying, "This is a good day, you should see him on a bad day." 

Caring for him is alot like parenting a toddler in an 11 year old body.
 A toddler who has no ideas of the dangers in his world. 
A toddler who is tall enough to reach the stove, the counter tops and who thinks child locks were made to dismantle.
A toddler who is too big to grab under one arm and haul out of the way of danger.
A toddler who realizes that other people will give him ten times more freedom than mom and dad, and has no qualms about going behind our backs to attain that freedom.
A toddler who doesn't understand his limitations, but is fully aware that his peers have privileges way beyond what mom and dad allow. His inability to comprehend his world and the gap between what he wants to do and what he is allowed to do, means he blames the very people who are expending a tremendous amount of brain power to keep him safe. 

It often feels like a no win situation and what is even worse, is the realization that while he is growing physically, mentally and emotionally we are only making creeping progress thanks to FASD and a gene mutation. When you know there is no end in sight, when you know things are only going to become more difficult, it is sooo hard to keep your thoughts positive and embrace the life you are called to, Many mornings find me praying for grace, strength and love because I often still feel drained from the previous days escapades.

These FB groups have been invaluable in helping my husband and I understand the intricacies of FASD, as well as providing a place where we can ask question's and share in the humor that only the fellow parent of a child with FASD would find laughable. 

-Parenting FASD Kids

-Flying With Broken Wings

-FASD Caregiver Success

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Grief Is Love With No Place To Go - Living With Trauma

Someone shared this with our support group and I fell in love with it. I thought it perfectly sums up what it is like to parent children who cannot or doesn't want to be parented. 

When you adopt a child, you don't do so thinking, "Someday my child may be hurting so badly due to past trauma, that he will do his best to destroy our family."

You fully intend to love and care for him. To meet all his needs as well as supply some of his wants, just to see him smile.

You wanted to hug him close, tuck him in at night and hear him whisper, "Good night."

You dreamed of spending one on one time with him. Of building your relationship, and teaching him about Jesus.

You looked forward to passing on the treasure's you saved from your childhood. Watching him play with your old toys would be such a joy.

You wanted to shower him with love and affection, because that is what being a parent is all about.

You never dreamed that your child might not be able to handle a close relationship with you. That he might not trust you, even after he has been in your home for 10 years and always had his needs met. You didn't know some children have been hurt so badly in their short lifetime that they may not be able to function in a family setting. Who knew that some children feel safest when they are inflicting pain on others because it gives them a sense of control?

Because you love your child, you refrain from hugs, knowing that he fears physical touch.

You watch from afar as a stranger meets your child's needs because you couldn't keep him safe in your home. 

You listen as your child tells a stranger his deepest wishes because in his mind a stranger is safer than his own parents.

You watch your child make poor choices and long to help him get on the right path, but he wants nothing to do with you. 

You cry as he gets into trouble yet again, knowing the hard road he has ahead of him.

And you feel grief. Heart wrenching grief. Grief hurts. It rips deep into your heart until it feels like physical pain. As you analyze your hurt, you come to realize that what you are really feeling is loss...the loss of an opportunity to love your child in the way you always dreamed.

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A Busy But Blessed Week

Last week I took Joseph to the ER because he had an irregular heart beat. This was the second time it happened and we decided it was time to get it checked out. All the tests came back negative so the doctor told me to take him to a pediatric cardiologist just to make sure everything is really okay.

Joseph was quite fascinated by the monitors. The nurse explained what each line was for and he listened intently. I was a little concerned how the ER personnel would relate to him but his stuffed puppy and "overwhelmed Joseph grin," took care of any explaining I may have had to do.

Monday morning found us at the cardiologist where he was diagnosed with an innocent heart murmur. His doctor recommended we increase his fluids and see if that makes a difference. Our other option was to wear a monitor for 30 days. Not something I want to do if we don't have to. Joseph loves all things mechanical and I know he wouldn't be able to leave his hands off the monitor.

One day as one child was yelling some rather nasty words at me, the van from Royers drove in. Thanks to my friend for thinking of me, it made my day so much brighter! 

On Tuesday Lia had an OT eval with the beloved Miss Barlett. She qualifies for services so we will add weekly OT appointments to our schedule. Miss Barlett was Joseph's OT about two years ago and when it was recommended that I take Lia for an OT evaluation there was no question about where I would take her. Miss Barlett is firm, but has a cheerful, fun loving personality that my children respond to. My sister in law blessed us with a meal which she dropped off before I left for Lia's OT appointment. 

On Wednesday we babysat for a friend of ours. The children love having a new playmate.

Thursday was Joseph's routine psych appointment, the one I despise. I failed to bring a book along for Joseph which was mistake number one. However I was counting on them having the TV on with a children's show which holds Joseph's attention as we wait. The waiting room was pretty full and the majority of the folks seemed to be in a rather foul mood. One mother/son had a few rounds while Joseph looked on wide eyed. The mother of another patient went toe to toe with the receptionist and then proceeded to have a long, detailed discussion on her phone that gave Joseph's ears something else to listen to! When they finally called Joseph back 40 minutes later I was about frazzled (alot more went on that I won't relate here). Joseph always comes unglued at these appointments because he knows the doctor will ask lot's of questions and he cannot understand them because of his accent. This means every time the doctor asks a question, Joseph looks at me for clarification and I fear it makes it look like I don't allow Joseph to talk. Maybe this doctor asks all these questions because he remembers his first visit with Joseph when he announced that he wants to be a butcher when he grows up! In reality I know why he asks each and every question and it would save us both time n stress if I could say, "He is safe, he feels loved, he has friends and he can do his school work," and leave it at that.

This morning I took Kiana for some fasting lab work her nutritionist wanted done. It wouldn't be so bad but she had to go for food allergy testing to another lab last week, then we learned that the sample wasn't viable because it got too cold during transport. I am awaiting a new test kit and when that one is filled I hope to be done for awhile. Thankfully the tech's were excellent this morning, even Kiana had to begrudgingly admit that they were pretty good.

Keep on keeping on for...."In due season ye shall reap if ye faint not."   Galatians 6:9

Our Family Trip

We received tickets to the Creation Museum and the Ark Encounter through SWAN. We left Wednesday afternoon and came home last evening. Everyone had fun, but we all (or most of us) agreed that it is wonderful to be home again!

There were life sized displays throughout the Ark. Joseph asked me several times if those are real people!

Walking into the ark

We were so busy trying to keep our crew in line, we forgot to take a picture of the front of the Ark. We got this shot from the parking lot.

There were a few live animals inside the Ark.

The back of the Ark

This is how Joseph spent a great deal or our trip. Squinted eyes and his coat hood pulled up. The noise and lights were too much for him. In hindsight I should have brought noise blocking head phones and sun glasses. If it would be acceptable, I would have also brought a leash. Keeping track of three children who are easily distracted was quite a task.

We walked through Christmas Town at the Creation Museum early so we could beat the crowds. The brochure said they have tens of thousands of visitors who come just to see Christmas Town and from the preparations under way, it appeared they were prepared for just that.

Dean bought the children each a cup of hot chocolate. You should have seen their eyes light up! I told him he went up another step in their minds.

This girl was delighted with her very own cup, best of all it had a lid!!!

There Creation Museum had a small petting zoo

We ate at Cracker Barrel on Saturday evening. We were all tired of fast food!

I hurt my back a few days before we left on our trip. Lia was pleased to be my head prop,

Our motel had a pool, much to the children's delight.

Walking into the Creation Museum

Kiana and Joseph weren't impressed with the dinosaurs. Kiana kept asking me if they are still dinosaurs around and how do I know that they are extinct?

One final picture. The party was pretty much over at this point. The attitudes from a lack of sleep, structure and all the excitement were getting the best of everyone.

A few things we did to keep everyone as regulated as possible was:

-brought our own healthy snacks

-made sure the children ate enough protein

-went to bed early when possible

-went over rules before going into a restaurant or museum

-went prepared for things to be a bit rough so we weren't disappointed when things didn't go as planned.

Last night I asked Dean if he would take off work today because I anticipated having three very dysregulated little people. He asked if I was dreading today and I said, "Let's just say I am preparing for the worst, but hope to be pleasantly surprised." Amazingly enough, our morning wasn't any worse than any other school morning!  

A Busy Week And A Fun Family Day

Life has been rushing on by at an alarming pace. I think homeschooling makes the days go by faster since our mornings are devoted to school. Last Friday the children and I combined school work and apple sauce making. Kind of makes a complicated, sticky mess but we were finished with both jobs by lunch time thanks to willing helpers.

Kiana, Joseph and Lia kept the sink filled with apples and ran errands for me.

Thanks to COBYS and SWAN we enjoyed a day at Cherry Crest Farm yesterday. The weather was beautiful and the children loved having dad along and I loved having another adult along to keep an eye on everyone.

Feeding the goats

Lia and Joseph standing on top of the straw tunnel.

Inside the straw tunnel.

Lia made a new friend!

Crawling on the "spider web."

Hang on, Kiana!

Relaxing

Strasburg Railroad goes through the farm.

Dean had to go in to work for a few hours. When he came home we went to Plum Creek Farm for ice cream. It was too cold to be eating ice cream but we really wanted to try their Pumpkin Spice ice cream so we endured the shivers! The ice cream was delicious!

Lia skipped the ice cream and ordered french fries instead

October is "dentist month" at our house. Joseph had an appointment on Tuesday and I had one on Wednesday - a make up for last weeks missed appointment. You can read about that episode here: An Almost Tragedy.

Taking selfie's with mom's phone to pass the time.

When mom and dad stay up till all hours of the night calming a sibling, you just might fall asleep on the couch! 

We are having some good days with Kiana, although the hard ones are still in the majority. Someone mentioned the other Sunday that I stayed in the service all morning, something that hadn't happened for months thanks to Lyme. That comment was a good reminder that things are getting better and I need to focus on those times. Today is Kiana's 10th birthday. I will admit I was apprehensive because birthdays are major triggers for our children. However we have had only one "episode" this morning, leaving me feeling grateful. Now I need to go bake a cake and wrap a birthday gift!