Saturday, July 22, 2017

I Don't Know What My Business Is - Living With FASD

Whenever we think we finally know how to parent our son with FASD, something new throws us off track. The latest, "Something new," has been constantly minding everyone else's business along with a decrease in mental/cognitive functioning on his part. These two things combined have been making my brain spin and his siblings frustration and tolerance for his actions decrease. 

I tried reminding him to mind his own business, ignoring him and any other trick I could dream up, but nothing worked so I went to my trusty FASD support group and asked for help. This group is comprised of parents as well as adults with FASD. The latter, is a huge blessing because they often remember doing the things that we parents find frustrating, and can explain why they did them. 

I received many helpful responses. Including the reminder that people with FASD, find it easier to hear and see things outside of their own actions, due to the fact that they have a hard time internalizing abstract reasoning. This makes perfect sense and is something we see in him quite frequently.

I explained why his siblings (and sometimes his parents) are getting frustrated by his constant interrupting and adding his three cents worth to conversations that have nothing to do with him. He looked at me with a puzzled expression and said, "How do I know what is my business?" Ouch! Poor boy! 

FASD is unfair, but at times it is just plain cruel! I should have thought of the fact that perhaps he doesn't know what we mean when we say, "I wasn't talking to you Joseph, mind your own business." No wonder he was getting frustrated with us and vice versa!

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Thursday, July 20, 2017

A Day In The Life -Living With FASD

A day in the life of a parent who's child has FASD.....





You schedule appointments, keeping in mind that you will need to find a suitable babysitter for your child, or bring him with you.

You have to be by his side as he pours his cereal because he has no idea how much cereal (or any food for that matter) he can eat. If you let him, he will fill it brim full with cereal and make a mess when he pours in the milk. Every. Single. Time

You have to monitor his bathroom usage because you never know what will go down the toilet. His, "Out of sight, out of mind," mentality can cause no end of trouble.

You pick up the pictures he drew on scraps of paper and gaze in awe at his ability to draw, then smile when you remember that his birth mom loved drawing as well.

You cringe when you move his bed away from the wall. You never know what you will find, be it empty snack wrappers, dirty undies, wads of chewed paper, or worse.

Your adrenaline begins pumping when you hear his voice reach a certain level, you know a melt down is imminent if you don't intervene.

You smile as you watch him interact well with a toddler, but feel sad that he cannot do so with his peers.

You keep protein on hand for those times when he is dysregulated. Sometimes water and protein are all he needs to get him back on track.

You shed a few tears when friends invite you over, and you know you can't go because your child got to bed late one night earlier in the week and you will pay dearly if you delay bedtime again.

You hold tightly to his hand as you walk through the grocery store and ignore the looks of fellow shoppers.

You are thankful your child looks as healthy as he does, but sometimes you can't help wishing his disabilities were a little more visible. Maybe then people would be willing to show him more grace.

You wish the rest of the world could be as loving and forgiving as your child.

You are tempted to hang a sign on your child stating, "Do not interact with my child, it over stimulates him. Do not give him treats without asking, I need to monitor his sugar." Even that small piece of candy can be enough to make his eczema flare.

You hide in the bathroom and sob out your frustration, ask God for grace and patience to handle one more melt down, one more scream, one more moment with this child. When you come out of the bathroom your child gives you a hug and says, "I love you mom, I am sorry I made you sad," and your guilt knows no limits.

You cringe when another well meaning person says, "Look at you, you are growing so big! What grade will you be in when school starts? Are you excited?" You sense your child's dysregulation rising with each word. You hold your breath because you know he is going to spill out a barrage of words plus you will most likely have a melt down on your hands after the person has moved on.

You constantly fear someone is going to pull your child aside and ask questions about his home life, because you know your child will say whatever he thinks the interviewer wants to hear. Knowing how much pain this could inflict on your family makes you extra cautious, which makes you look even more paranoid.

You will crawl into bed at the end of the day, thankful to have made it through another day while praying for grace for the coming one.





Tuesday, July 18, 2017

When Circumstances Are Beyond Our Control

I like when my life makes sense. I like to know I am doing the right thing in any given circumstance. Unfortunately, it seems Dean and I are constantly being dumped into situations where we either have to swim for our lives, or risk sinking. Humanly speaking, the scariest part about it all is, that we often have several things going on at once so we can't give any one scenario our full attention. Spiritually speaking, this is an excellent way to learn to trust.

Kiana has an appointment with the hematologist tomorrow. This appointment is a follow up for the blood clot she developed from her PICC line. At the hospital they did a test to see if she has a genetic clotting disorder. If this is the case, she may not be eligible for another PICC line, which she needs to fight her Lyme since many antibiotics do not cross the blood brain barrier and due to her age she is not able to take many that do.

On Thursday, she see's her Lyme doctor and we will deciding on a course of treatment based on what the hematologist says. She has been on an oral antibiotic since they pulled her line but it isn't helping much. Her past few days have been full of rages and brain fog. 

Joseph has changed again, something that happens periodically. We learn how to manage a particular FASD quirk only to have that vanish and something else take it's place. The latest thing is a big mouth without a filter. People with FASD find it difficult to see their own negative actions, but can easily see the faults of others. This trait is not endearing Joseph to his siblings in the least! He is constantly monitoring them, all the while doing things to irritate and annoy them. He likes to use big words, and his immature actions coupled with his large, expressive language can be a bit hard to swallow!

Yesterday I spoke with the lady who is over our, "Home school to be." We finished the testing and she called to tell me which levels each child will be on in the various subjects. She emailed me a massive packing order and I will admit that PO made it all look frighteningly real! Can I do this?! Although the thought of another year like last year, convinces me I have to try! 

SWAN is an organization that provides post adoption services. We are in the process of acquiring some of said services which means we have to have several home visits from COBYS, one of  the agencies through which SWAN provides services. Having strangers come into our home to do a home safety check thoroughly traumatized the three youngest. This man brought to mind a certain caseworker who came and was responsible for so much of the trauma our family experienced prior to Lia's adoption. It didn't help that as part of the home safety check, they had to make sure our smoke detectors work. Even though they saw Mr. D press the alarm, they still panicked.

All of these situations plus a few others, make me tremble in my shoes, until I am reminded that with God all things are possible!


Friday, July 14, 2017

Why Trauma Creates "Family Hermits"


Ever wonder why families that have children with early childhood trauma spend most of their time at home? 

Children who have had a relatively trauma free existence, expect the adults in their life to protect them. They expect good things from life and as a result are calm and adaptable. On the other hand are those children who have learned to expect pain and suffering, as such, they are constantly bracing themselves for the next round. Even after these children are removed from a bad situation, they continue to rely on what their past has taught them. These children are always at a 5 on the 1 - 10 panic scale, and everything or nothing will send them shooting past a 10 and into total dysregulation.

Any situation outside of what appears to be the daily, boring routine  can bring on anxiety. Anxiety can manifest itself in many ways such as hyperactivity, chatter and acting out. If the parent tries to intervene rather than accepting their help, the child is likely melt down. If the parent does not intervene, the child melts down as well.

If the child has an insecure attachment or none at all, he will not trust his parents to keep him safe. So he will be hypervigilant and do everything he can to prove to himself that mom and dad are not strong enough to keep him safe. 

These children are barely able to keep a grip on their "sanity" at home where they know the routine, and triggers are at a minimum. These children will act like they have never had a day of training in their lives when they are outside of the controlled environment of home.

Then you have the child who finds life in general overwhelming. Playing with his peers is to confusing, causing him to melt down. He needs an external brain and when he can rely on his parents to provide that, he can handle a very low key existence. He needs his parents constantly by his side, calming him, redirecting him and pulling him aside when he begins to get over stimulated. This same child, who is fairly calm at home, does not do well when he is out and about. For one, he is over stimulated. Two, he doesn't know what will happen next. Three, people are talking to him, trying to interact and his brain cannot keep up. Guess what happens? You got it, another melt down!

Now these melt downs are bad enough, but what the public doesn't see is the days, sometimes weeks, it takes for the child to return to baseline. Remember baseline for them is a 5 versus a 1 like it is for an emotionally healthy child. During this calming down period, the rages are more intense and more irrational and the whining and disobedience is off the charts.

The worst part about it is that anything out of the ordinary can trigger meltdowns. 
-Church, and most of us go at least once a week
- grocery shopping - another weekly activity
- family gatherings
- having friends over
- going to a friends house
- dentist and doctor appointments
- staying at a baby sitter

And of course you can't forget the times a sibling is away overnight, the family gets the stomach flu or someone has a birthday. Then there are the traumaversary's, the anniversary of a traumatic happening. The child may not remember what happened but their little bodies never forget. If you have multiple trauma children in the home, they will be triggered when their siblings melt downs creating another level of stress n trauma.

Quite frankly, is it any wonder we tend to be hermits, as one friend lovingly classified her family? We are barely keeping a grip on our family's sanity because of all the chaos and trauma. This creates what appears to be overly protective, slightly paranoid (or is that totally paranoid?) parents who do all in their power to prevent another melt down. The parents know that the next melt down may dissolve the fragile emotional stability their family is struggling to maintain.

When we stay home and don't do anything beyond the ordinary day to day tasks, our children can sometimes thrive. Then I begin to think they are doing better and we do something like go to the cabin, which we did this past weekend. I am always brought firmly back to earth. 

Doing your best to maintain a stable emotional equilibrium is exhausting, especially when it goes on for year after and year with what appears to be little to no improvement. Eventually you get to the place where you as the parent are so burned out that you don't have the emotional stamina to attempt anything beyond the usual day to day life. Eventually you find your family is just happier at home....until the next time the desire to, "Be like everyone else," starts bothering you, that is!

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Tuesday, July 11, 2017

10 Tips For Caring For Someone With FASD -Life With FASD

            


1. Reevaluate the meaning of success. Those with FASD can succeed, you just need to redefine what that means. Many people with FASD can hold down a job with extra support and guidance. Your child may not be able to keep up with his peers academically or socially, but he may do an excellent job of entertaining his younger siblings.

2. Provide support. People with FASD can thrive in their home, school and community but only if they have plenty of external supports in place. FASD causes frustration and confusion which leads to meltdowns and an inability to cope with life. If you help them understand the world around them and provide plenty of downtime, they can succeed.

3. Research, research, research. FASD is manifested differently in every individual. This means each person has to figure out what works best for him or her. There is new information coming out all the time, make it your responsibility to keep yourself informed.

4. Psychiatric medication can be helpful, but they will not "cure" the FASD. People with FASD metabolize medications differently, always keep this in mind as they can experience side effects that can be very detrimental.

5. Adequate sleep is a must. Our son is 9 years old and needs 12 hours of rest every night. FASD causes sleep disturbances such as vivid dreams, an inability to fall asleep or stay asleep, as well as a mixed up sleep cycle. Many people benefit from a sleep study. Melatonin and magnesium are also beneficial, but use with caution. A quiet room, weighted blanket and a bedtime routine are also helpful.

6. FASD is permanent. There are many types of therapy out there to help improve the damage done by the alcohol, but there is no cure. Your child will not grow out of it. Put supports in place so that when he hits turbulent times, you have the means to keep him safe.

7. Good days and bad days. FASD is notorious for what is known as good days and bad days. There will be days when some tasks come easy and the next day there will be zero ability. This can cause increasing frustration for the parent or caregiver because typically once someone masters a task, they have it for life. Not so with those with FASD. 

8. Memory can be sketchy at best. This is due to brain damage which causes those with FASD to have a distorted view of the world. It may appear that they are deliberately lying to you, when in reality they are recalling the incident to the best of their knowledge.

9. Praise is a must. People with FASD are doing their best but still tend to fall short of what is asked of them. Even if you don't verbalize your disappointment, they feel it and internalize it. Imagine living in a world where you feel unable to measure up no matter how hard you try? For this reason, praise is essential for good emotional health. 

10. Love them with your whole heart. People with FASD long to be loved. They will return the love ten fold if you give them an opportunity and when the frustrating times come, as they inevitably will, you can soak up that love!

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Monday, July 10, 2017

Positive's Of FASD - Living With FASD



When I write about Joseph, and how FASD affects him, I tend to share tips we have learned to help him and us cope. Today I want to share some of the positive's of  FASD.

A desire for affirmation. This may, sadly, be an attribute only because those with FASD are often on the receiving end of their parents, or caregivers frustration. 

A loving heart. Joseph loves people genuinely. He loves people for who they are, and doesn't expect them to perform at a certain level.

A love for animals. Joseph loves animals. He can be rough with them, but we have discovered this is sensory related. He doesn't realize that he is squeezing an animal to tightly, or that bunnies don't like swing rides.

A desire to obey. Joseph wants to obey, but the world is often a complex place for him. He has difficulties with social cues and zero impulse control, two things that often land him in trouble.

Empathy for anything and anyone who is hurting. If one of his siblings has a head ache, Joseph often ends up in tears because he feels so sorry for them.

He is good at entertaining those younger and smaller than himself. Again, he tends to be a bit rough but this is once more due to his sensory perception.

If you have a friend with FASD, you can guarantee he will be your friend for life. He will love you despite your shortcomings, and give you plenty of opportunities to love him in return.

People with FASD have a lovable quality about them. Even though you may be utterly frustrated, when your child gives you and hug n kiss before he crawls into bed, your heart will melt.

People with FASD are generally kind and empathetic, but their disabilities can obscure their good points. Dig around a bit and some of the things that look like misbehavior may be misunderstanding instead. An inability to perform a certain task is often misunderstood as defiance, while roughness can be sensory related.

If you have someone with FASD in your life, give them an extra hug today. Some children have difficulties with attachment, so if this person is a child, hug his parents and compliment the child. 

Saturday, July 1, 2017

What Is It Like To Parent A Child With FASD?




What does is it like to parent a child with FASD?


It means constant supervision. Joseph is not safe out of our sight. He won't intentionally hurt himself or others, he simply lacks cause and effect thinking abilities. He doesn't think about what will happen if he stands on a stool and sticks things in the fan. He doesn't think about what will happen if he sits on a trike at the top of a hill.

It means explaining and then explaining again, why my child cannot be trusted and then cleaning up the pieces when people fail to believe me.

It means parenting my big for his age, 9 year old like a toddler, but refusing to let others to do the same because of his poor attachment.
It means constantly evaluating what he is saying with what we know to be true because of his unique perspective on life. If he says someone gave him a candy bar, we don't assume they did, we have to figure out where he got it and why he has it. 

It means receiving notes, cards, hugs and kisses multiple times a day from your child who, when he loves you, loves you with his whole being.

It means checking up on everything he does. If I tell him to put the ice cream in the freezer, there is no guarantee it will get there. I may later find it on a shelf in the pantry.

It means making sure he understands what I am saying, just because he nods his head and agree's with me, doesn't mean he understood a command.

It means defusing rages the likes of which would make many people run for cover. 

It means doing ones best to help children understand that their sibling is not always accountable for his actions, even though they receive consequences when they do the same thing.

It means ignoring the shaking heads when people see what is deemed, "Socially inappropriate behavior."

It means feeling frustrated with your child and being unable to prevent the same situation from happening again, because your child is unable to understand a situation.

It means always thinking ahead to prevent those massive meltdowns and tears.

It means listening to screaming and raging for an hour only to have the storm pass and your child come up to you and say, "I love you mom!" Which leaves your heart in a muddle of love and frustration.

It means learning to let your eyes show love even while you are dodging kicks and flying objects.

It means holding your child back from things others his age are doing because you know he is unable to keep up and he will melt down in tears of frustration.

It means always looking for new ways to defuse situations because what works one time is not guaranteed to work again.

It means looking for ways to set your child up to succeed, even if it is a simple thing like hanging his coat on a hook.

Parenting a child with FASD means your emotions are on a constant roller coaster. You can go from rages to adoration to a melt down in moments. Everyone is with FASD is affected differently, what is true for one person may not be true for another. This is only my side of the story, I cannot imagine how difficult it must be for those affected by prenatal alcohol exposure. They need our love and grace....but so do their caregivers!

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